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NIH lead clinical investigator thinks CFS and fibro are somatoform

Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic.

In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity of subjective experience and that of objective impairment.”

Similarly, in an interview with Family Practice News, Walitt described fibromyalgia as a “psychosomatic experience,” part of the “range of normal,” rather than an abnormal disease state; a way of “dealing with the difficulties of just being a human.”

Here is the video and a complete transcription of Dr. Walitt’s video interview “Fibromyalgia doesn’t fit the disease model” for Family Practice News.

Do you think Walitt should be involved in this landmark study? Leave your comments for the NIH below.

Video

Transcript

Interviewer: What shall we do to try to help patients with fibromyalgia?

Dr. WalittThe most important thing to do is to listen, right, to understand that the experience is valid and not to belittle them, right. It’s also important to be honest with them and explain that the medical system can’t provide the answers that they want, that at best we can try to help them–we can give them some tools to help deal with the day to day struggles of having fibromyalgia, but we can’t just make it go away; we can’t restore them to what they think they should be and we should stay with them over the length of their struggle; we should bear witness to their difficulties,s which is the oldest of the jobs that physicians do.

Screenshot 2016-02-20 22.55.10

One of the interesting things about this talk is that people come in with a set of beliefs and a lot of those come from what they’ve been taught and what they see on television and what their patients come to their offices with–there are these ideas of, you know, fibromyalgia as a disorder of sensitive nerves, but it’s a narrative that doesn’t seem to be valid and the hope is–and physicians as they see me talk often start off using that narrative and believing in that narrative and answering the questions in terms of that narrative, but deep down they know that it’s not true and by the end, after I say my message, they’re relieved to hear that deep down, their beliefs are not wrong and that really what may be required is not saying that fibromyalgia is not real, but finding a new narrative in which to discuss it–one that makes much more sense–to everybody.

Interviewer: Do we have any idea, yet, what narrative might be more useful?

Dr. Walitt: Ah, that’s a tough question–the problem is that language is so heavily charged. People are not willing to accept the idea that our emotions affect our sensation, right, the idea that mind itself is able to create these things and that all experience is a psychosomatic experience. Nothing exists without your brain creating those sensations for you and the idea that that process of creation can create these things and is supposed to create things like this to inform us and to teach us and to guide our behavior pushes against the idea that we have free will and that we can do whatever we want and that we should be able to lead the lives that we have always thought we should lead–not the ones that our bodies are restricting us to. And so accepting those kind of ideas is not so easy–that might make it a little bit easier on everybody; that might be a more palatable narrative, understanding that, you know, people can feel bad for no real fault of their own, because of the circumstances of lives and how brains just work–the way it’s supposed to be–as opposed to being sick. There’s a wonderful line from this gentleman Joel Higgs, “When people are atypical, societies do one of three things: They either medicalize, criminalize, or moralize.” And so when you find people with thing like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.

Screenshot 2016-02-20 22.55.52

Interviewer: Brian, why did you title your talk on fibromyalgia as ‘Tilting at Windmills’?

Dr. Walitt: Well, I wanted to invoke Don Quixote’s quest to slay a dragon. Fibromyalgia is a very challenging thing for physicians to deal with and the idea that there are easy answers that can be prescribed to one’s patients is kind of a fallacy and I thought that that title would bring that out.”

Screenshot 2016-02-20 22.56.21

Interviewer: What are the difficulties of dealing with fibromyalgia?

Dr. WalittWell, as physicians, we have a limited amount of time in the office and our training is to use medications to deal with the problems that we see in front of us. And fibromyalgia as a disorder defies all of that. It requires a lot more time and medications do not work very well. And if you try to adhere to how we’ve been trained to treat people, you’ll inevitably fail.

The experience of fibromyalgia is very much real to the people who have it. The way that we think and feel is based in electricity and biochemistry of our brains and we don’t really understand how the physicality of that chemistry becomes our thoughts and feelings. And in people with fibromyalgia, they clearly feel these ways and there’s probably an underlying biology to it, but the idea that it’s an abnormal biology is less clear. The idea that the way that we think and feel should be affected by the goings and comings of our lives and the difficulties we have is something that seems self-evident, but also something that we like to pretend isn’t true.

We would love it if we could reduce all of these things to a simple pathway. You know, science has had all of its greatest successes in reducing problems to a single pathway, a single place and all the, you know, if you take diabetes, understanding the key role of insulin in diabetes, once that was understood, it transformed the whole illness and allowed for people to become better. The problem with things like fibromyalgia and other disorders that are of the neurologic systems of the brain is that the brain seems to have a duel existence. It exists both as a biological construct, but it also exists as sort of a psychological construct and we don’t really understand how the two go together yet, how they play together, how they sing together, how they work together–and so our attempts to alter biology without understanding the emotional overlay probably leads to a lot of failure. It speaks to our lack of understanding of how it really works.

Screenshot 2016-02-20 22.57.47

InterviewerWhat is fibromyalgia?

Dr. WalittThat’s a hard one. Time will tell. Fibromyalgia appears to be a way that people experience suffering in their body, both from the way that their bodies are interpreted and the problems of the body, as well as the problems in their lives, as well as how societies tell us how to experience things. All those come together to create a unique experience in different points in time and right now that experience is–one of those experiences is fibromyalgia. Is it a disease or is it a normal way that we handle and are supposed to work is still to be determined. But it’s quite possible that the tricky way that the brain works is that we may create symptoms as part of how we are supposed to operate, as opposed to this representing the system breaking down.

When you talk to patients with fibromyalgia and you ask them what they think about it, they can often provide you the answers about where they should go. People with highly spiritual feelings and believe in spiritual forces as potential ways to heal should be referred that way. People who believe in exercise should go that way. People who believe in Eastern philosophy should be referred that way. Taking a one-size-fits-all or using your own judgment of what is legitimate is often not helpful in treating people with fibromyalgia because it’s really about what they think is legitimate.

Screenshot 2016-02-20 22.58.22

 

Categories: Advocacy, Featured news, Research, United States

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151 comments on “NIH lead clinical investigator thinks CFS and fibro are somatoform
    1. Melissa says:

      After 23 years of this “bleep” I am beyond angry with idiots with this opinion! This man is not a researcher — in the truest sense. Until he LIVES in our bodies, experiences the total devastation of not being able to trust one’s own body — to do the simplest of tasks….without severe Post Exertional Malaise for days and/or weeks, months afterwards — and has lost his ability to work….and lost all of his social life….THEN, only then can he be called a person who truely understands that THIS IS A PHYSICAL illness!

      I am 55, and was hit ONE DAY — neverto be the same again. As busy full-time professional, and very athletic person all my life I was completely stunned with my body’s inability to move that day. I have never regained my former ability with a full decline since that time. I had enjoyed triathalons, skiing, tennis, hiking fourteeners in Colorado and was completing my graduate degree while working full-time. I dud not and do not currently use this physical illness as a means to hide from my life. NO — it has robbed me a full life, of the ability to work and of the ability to have a full social life.

      This “researcher” has NO right to be put his name on a study of CFS/ME). We who are ill with CFS – deserve a true researcher who is honestly interested in helping us find a physical reason and ultimately then, a cure!

      MCB — Fully disabled 8 years….taking “early retirement” due entirely to the physical limitations.

      1. Caroline Fribance says:

        You are absolutely right. This man has not even looked at the research, apparently. Pretty clear that FM is not a NORMAL response. Fire him.

    2. Gena Saunier says:

      How could you put this man in charge? It shows how little you think of our disease and that you have no intention of helping us at all. I have no trouble dealing with being human. I quite like it. I do have trouble dealing with idiots like this, so I won’t. Our ME community is strong and we’ll figure this nightmare out with or without your help.

    3. val says:

      He should be removed. It is proven to be biological and neurological. Not Psychological. Ive had it 27 years. I am a positive person but suffer and it is not Psychological. The uk gov have important documents locked away from the public in Kew Gardens for 80 years not 30 as this info was made unavailable for this time to the public. if there was nothing concerning why were the rules changed for m.e.

      This man should be removed.

      1. Absolutely. I put him in a “class” with the late Stephen Straus of the CDC. These people are total disasters for patients and advocates who are trying to make the world recognize that Fibro and ME are REAL DISEASES and not in our imaginations.

    4. Amy mogavero says:

      Walitt has already made up his mind, and his biases are strongly evident. He is obviously not a specialist in this illness, or he would understand the connection to physical aspects. He should be removed and someone with more experience should be brought on.

      1. Amy, I agree he should be removed. It is difficult to understand how people like this guy are put into these positions within the framework of NIH. “The powers that be” at NIH (Dr. Collins and his colleagues), are in a level far away from the people they are supposed to be helping. I watched the video with great interest, particularly Walitt’s facial expressions as he was struggling with answering the questions put to him – questions that were really not answered to my satisfaction at all. Did he make sense to anyone else watching the video?

        1. Amy Mogavero says:

          Carol, I wasn’t able to see the video unfortunately. But based on the transcripts, I completely agree with you.

        2. Jane says:

          That’s exactly what I was thinking! He reminded me of a politician who wants to avoid answering a particular question and so uses complicated sentences which sound impressive but don’t actually mean anything. I actually stopped and replayed the video at one point to try to make sense of one of his sentences. His facial expressions were very odd. Eyes all over the place, pained expressions – almost as though he was saying things he didn’t want to say. I don’t know what to make of the interview but it sure was hard to watch.

          1. Lots of gobbley-gook, as far as I’m concerned, Jane. It will be a real travesty if Walitt is not removed. His position in the NIH is inexplicable. How a person with his mindset getsC to be appointed to this important position, is beyond my imagination.

    5. Lee says:

      At the risk of being attacked by the ME/CFS community, have any patients here tried any form of therapy or counselling?

      I’m not implying the illness is not real, just curious if anyone has tried it relating

      1. Cat Eye says:

        We need to reply via email? Not through a direct link? Just to be sure …

        1. Caroline Fribance says:

          #MEAction – A platform for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome activism | Cat Eye replied to Lee on NIH lead clinical investigator thinks CFS and fibro are somatoformunsubscribe

      2. Cat Eye says:

        To Dr Lee.

        I don’t see why patients would attack someone asking a question about something most of us have no problem talking about.

        i get we are portrayed (or come accross) as totally anti-psychology minded.
        Which is not the case.

        We do react to people, doctors, … who are so sure ME is psychosomatic that they neglect and refuse to study or acknowledge the abundant biomedical evidence that’s available for everyone to read.

        To answer your question: Yes. I have seen a neuro-psychiatrist, I did CBT, and later on i saw a psycholigist because i couldn’t cope with all the loss (work, social life, hobbies, …) anymore at a certain point.

        I’m not afraid to say this because i was willing to do EVERYTHING necessary & every ‘treatment’ available to get me out of this hell.

        I knew and always felt i was seriously physically ill but i didn’t shy away from a psychological approach. ‘What if?’ is the reason we are willing to do just about everything.

        Now, did it help me? Any of the 3 I tried.
        Simple answer: no.

        I needed to vent all the frustrations of staying ill & i was glad to be able to do that without having to bother my partner or my family & friends. They had a hard time dealing with what was happening too.

        The last 5 years or so I don’t need psychological help anymore. I have a better view on what’s going on with my body.

        I had numerous tests done & although there’s no magic Cure, knowing my immune system, metabolic system & brain are not working properly helps me put things in perspective.

        I can’t answer for others but i (co)run an online support group in BE and most of the people i know are not the types to shun away from mental help if they need it.

        But to be honest, a few of my close online contacts help me cope better than any psy ever could. A small but close support-system is like a bright star in my rather caged life.

        Ps: take into consideration that my vocabulary isn’t as eleborate as my UK or US fellow patients.

        1. Sam says:

          Thank you for your response.
          I have a family member with me/cfs and any mention of counselling is met with anger, as if we’re implying her illness in in her head and that she’s crazy.

          The fact is that she is negative and tends to dwell on gossip and being judgmental, which seems like a waste of her very limited energy. I can understand feeling negative with such an illness, but that’s where counselling could help.

          If me or anyone else suggests such a thing, we can expect a ream of passive aggressive facebook post with memes about family/friends not being sympathetic to the sufferers of invisible illnesses :/

          1. Cateye says:

            Sam, others suggesting You shld go And See a psych isn’t helpfull at all. Not when You link it to our illness which is in no way a mental illness. It has mental components or consequences like any other chronic illness. Which is normal.

            I did what i did out of desperation but also bc insurance demanded i did CBT.

            And if it would reassure You: besides vesting it did not help me get any better.

            Perhaps it would help her a lot more if you & others wld acknowledge her being so so sick. Living a life that she has little control over.

            She is mourning. Losing part of who You are to a disease You can’t do a thing About makes You go through all the stages if morning, including anger.

            If or when she’s in need to go & talk to someone, she should be able to do that solely based on her own Will. And that counseling should not be conceived as a ‘treatment’ but rather as a cry for help.

            Has she got any online-support system? That would help her more than anything imo.

            Keep strong & take care!

  1. Anita says:

    This man cannot, I repeat, CANNOT, be a part of anything to do with our studies or our work. He needs to get FAR AWAY from our amazing Dr. Nath who took a stand and did the right thing, the scientific thing, to be a man that helps patients. It’s the weasel way out to cry psychosomatic, it’s the cruel thing to do. It’s the thing that causes “HARM” which is the one thing that is NOT supposed to happen. Get with the program and get up to date on the scientific research that has proven the medical necessity for help for these very severely ill patients.

  2. Joan Byrne says:

    It’s difficult to comment while keeping a civil tongue in my head. By appointing this person as lead clinical investigator into the upcoming CFS study, you have absolutely clarified that your intentions around serious bio medical research for this illness were never genuine. Many patients gave you the benefit of the doubt, believing that there was a real shift in attitudes by you towards this completely life changing, debilitating illness. Others simply did not trust you after decades of abuse and neglect. I really don’t know how you are going to resolve this. I do not have faith in you to do so. Of course Dr. Walitt, and his ‘cracked illness beliefs’ and must go, but the fact that he was placed as lead in the first place shows your clear intentions towards patients. i just don’t know how you think you can overcome this betrayal. Actions speak much louder than words and the jury is out. I will reserve my judgement for another day.

    1. Stacey says:

      Here here you are spot on!

    2. Els VH says:

      Totally agree.
      If NIH / NINDS wan patients to trust them this is truly such a big mistake.
      Replace him. Short & simple.

  3. nicola lavin says:

    WTF!!!!

  4. weyland says:

    After watching the linked video and reading several of the papers that he has authored or co-authored, I have grave concerns about his involvement in this study, especially as a lead investigator.

    We need investigators that are not biased one way or another but are impartial and have a strong biomedical background, such as Dr. Nath. We do not need someone whose musings[1] include approving references to the work of Simon Wessely and Edward Shorter. Dr. Walitt is a biopsychosocial proponent, in line with the British tradition, that has been hiding in plain sight at the NIH. His involvement in the study could introduce significant bias that could be extremely damaging to the field of ME and CFS research and to patients.

    [1] http://sci-hub.io/10.1038/nrrheum.2013.96

  5. Kati D says:

    If there is an issue where NIH, NINDS and the principal investigator needs to hear patients, it is the topic of who will lead this operation and whether or not they are curious about finding the real cause of this illness which prevents 75% of the patients population from working.

    Your team selection includes a fewsour apples who already made up their minds about us patients with ME and will likely not change their minds after their career spent belittling patients with ME and FM, and convictions that this is all in our heads. The 2 persons that are most worrisome are Dr Whalit and Dr Fred Gill.

    Please hear the voice of patients. We need only unbiased and truly atheist researchers.

    Thank you.

  6. Noreen Murphy says:

    Dr. Walitt’s comments are disgraceful and psychobabble. The fact that the NIH has put any trust in him and his ‘illness belief’ theories shows that the NIH has absolutely no intention of treating M.E. (ME/CFS) with any degree of seriousness, by doing biomedical research and employing only top-notch biomedical experts to get a treatment for M.E.

    The NIH knows the scientific research that’s out there. The NIH knows how ill people with severe M.E. are. The NIH could help if it wanted to. Putting people like Dr. Walitt shows that the NIH does not want to.

    Like Joan, I agree Dr. Walitt and his ‘cracked illness beliefs’ must go.
    Unlike Joan, I won’t reserve my judgment for another day.

    Yet again, shame on the NIH. You’ve let people with M.E. down, yet again!!

  7. A.B. says:

    After reviewing the scientific literature on ME/CFS, the Institute of Medicine concluded that ME/CFS is not a psychological problem or a psychosomatic disorder, but rather a serious multisystemic disease.

    Anyone that still believes ME/CFS is psychosomatic is clearly poorly informed and therefore a poor choice as lead clinical investigator. These beliefs risk introducing subtle bias into the study.

  8. Bonni R. says:

    Reading the transcripts of Dr Walitt’s interview left me feeling so discouraged and feeling like he’s about to “Undo” all the advances made in diseases such as Fibromyalgia, CFS, and likely others by taking us back by about 10-15 years of painstaking research and awareness.

    I take exception to SO much of what he said, but the following quote:
    “And so when you find people with things like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.”
    Really? “Just difficulties of being human”?!!
    I just can’t comprehend how callous and dismissive this supposed “expert” is towards very real and SERIOUS diseases which have crippled and disabled hundreds of thousands of patients.
    This is utterly outrageous. He needs to be replaced immediately.

  9. N.A. Wright says:

    Concern over Walitt’s role in the research is understandable, the question though is whether the choice of Walitt is perspective driven, or whether it is primarily bureaucratic. On the face of it the latter seems fairly likely – once the choice to go down the “intramural” route had been taken, Wallit woud be an obvious choice as lead investigator just on the basis of his position within NIH – Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations:

    >>”Dr. Walitt will provide his medical and scientific expertise to the development and oversight of intramural clinical protocols. He will help identify patient populations for pain studies, as well as educate NCCIH trainees about various chronic pain syndromes. Dr. Walitt has a dual role as a medical officer at the National Institute of Nursing Research.”<<

    Given that the breadth of the study (bio markers etc) extends well beyond Wallit's own "psychosomatic" perspective, the NIH expectation is likely to be that Wallit is a facilitator and manager of the research not someone who will impose an unsupported perspective. It might however be useful for MEAction and others to seek assurances from the NIH that, that is indeed the case.

  10. Stacey says:

    Dear god what an ignorant man.
    I sincerely hope that this low life or a loved one of his does not get ME/CFS/SIEDS or Fibromyalgia, he would soon change his tune!!!
    Absolutely no way should he be allowed near any suffering patients let alone a study he clearly knows nothing about.

    1. I totally agree, Stacey. He’s dangerous and if the medical students and community take his remarks and beliefs seriously, we are in greater trouble than we are already.

  11. Eric says:

    Anyone who believes this is psychosomatic is themselves crazy and should not be on the panel.

  12. Antje Ritter says:

    Please leave research, you have no place there!

  13. Lisa Petrison says:

    I do think that having someone with these views heading the panel will likely impede the extent to which a valid and useful study will be conducted.

    What are the mechanisms available to protest his involvement?

    1. #ME Action says:

      Hi Lisa. Several different people have submitted petitions to #MEAction which we are working on reconciling and publishing in the next several days. It would be interesting to think of other mechanisms. Do you have any other ideas or suggestions? We will also be sharing this page and the comments listed here with the NIH.

      1. Barbara says:

        Isn’ there an e-mail account of NIH that we patients and families could submerge by sending thousands of identique protesting mails?

  14. Scott Simpson says:

    Walitt is exactly the wrong person to be the lead clinical investigator on this study.

    It is his psychobabble approach of physical symptoms that has caused so much neglect and harm of ME patients.

    The patient population is speaking – is the NIH listening?

  15. Deborah Stewart says:

    B Walitt cannot be allowed to go near any study of people with ME.
    He is not fit for purpose.
    If you want to show you take patients seriously and show you understand this is a real biomedical illness–remove Walitt from study.

  16. esther howes says:

    In this Month’s Scientific American magazine, Fibromyalgia is listed as a possible symptom for a person carrying the fragile x syndrome. I highly doubt that a psychosomatic problem would be cited by them as a possible reaction to a genetic problem. This man should be disqualified from the position because NIH will then have no findings for CFS and Fibromyalgia.

  17. Barbara says:

    I am from Germany, with a severely ill daughter.So my vocabulary to communicate about the things Brian Wallitt says here is rather restrained.
    But what the hell is this man allowing himself to say in public? Why does not the whole worldwide communinity of patients of these diseases start an immediat shitstorm?? Write thousands of protest letters to the NIH?
    How can a person off such an ignorance and arrogance have any leading position concerning the study that should lead to find a cure? What medication could be found to treat and cure ” just being a human being”?

    1. Jaime says:

      Why, clearly it is up to us to harmonize ourselves with nature and our bodies, Barbara, re-tuning our chi to the universal frequency of healthy humankind (or any other psychobabble you like)!

      Isn’t it lucky that treating or researching illness is not the physician’s or researcher’s responsibility at all?

      That must come as a relief to them, just as Walitt says…

      -J

  18. Jean Buchanan says:

    I am so insulted, and very disturbed to think that this person can have any authority on this illness. It is a disease, which attacks the nervous system to create life altering ailments, and sometimes death. I have had CFS AND Fibromyalgia for many years, my positivity and mental stability is the only thing that has allowed me to cope with it. He needs to be struck off any committee!

  19. Bailey says:

    It is unfathomable to me that this man can disregard the overwhelming scientific evidence that has demonstrated that Fibromyalgia is a biological illness. If he can ignore all research on this illness then he surely will ignore ME/CFS research, including the IOM and P2P reports, which clearly and overwhelmingly state that ME/CFS is a biological illness.

    I was so happy to hear that the NIH had increased our funding and for once there wasn’t a single psychological study being funded this year; however, if the NIH puts a man IN CHARGE of the research who chooses to BELIEVE the illness is psychosomatic (despite what the science shows), then the NIH is destroying its credibility and quality of research. The NIH is well aware that it has neglected our patient group for far too many years and that we are suffering and desperate for help: it owes us much more than putting a man who ignores science on the front lines of scientific research.

  20. Beth Elaine Boel says:

    Dr. Walitt’s appointment as lead investigator in the proposed ME/CFS study is unacceptable. His biases in favor of a psychological definition of fibromyalgia and his New Age leanings make him exactly the wrong person to oversee ME/CFS research. If the NIH had any intention of building trust with the patient community, they could have found any number of physicians who espouse a more mainstream and scientific approach. Moreover, Dr. Walitt’s arrogance is highly inappropriate and misogynistic. We don’t need a physician to “bear witness” to our suffering so that we can feel safe enough in his paternal gaze to discover that life is difficult and that our pain is just another kind of normal. We are asking for biomedical research that isn’t tainted by inane prejudices. We don’t need yet another apologist for doctors.

    1. Adrienne says:

      Thank you. Well stated!!

  21. John says:

    Out with the psychobabblers, pretty please! They do nothing worthwhile and contribute nothing of value to any study they design or take part in- this is something ME/CFS patients have witnessed firsthand for the past several decades. Enough is enough. What happened to Dr. Collins’ talk of ‘appropriate skillsets’? What is appropriate about a skillset consisting of saying ‘it’s all in the patient’s mind’? Go back and read the early issues of ‘The Journal of Psychosomatic Medicine’ where they talk of ‘tubercular personality’, ‘psychosomatic acne’, etc. That long tradition of psychobabble is still continuing strong today, only the names of the poorly understood diseases have changed but the psychobabble remains the same. Please stop trying to massage the psychobabblers’ egos by letting them take part and let the biomedical researchers get on with business!

    When the protocol for this study was first published, one of my very first impressions was that I could smell the stench of psychobabblers two to three deep in the planning and design, from the ‘Functional disorder’ control, the fMRI component (a favorite tool of psychobabblers due to the sheer amount of manipulation involved all the way from what data points to keep to how to interpret the results, the ‘personal illness narrative’, etc). We patients have put up with enough with this shit for too long, it’s 2016 already and let’s fucking do this right!

  22. Anne Cavanaugh says:

    I am very surprised by the choice of Mr. Mallitt to lead the intramural study and frankly shocked. Their are a number of biomedical and genetic leads that can and should be researched further. This is well documented. Because ME/CFS is difficult to research does not mean it is psychosomatic, that is a cop out, and people who say this, have done little to no research on the topic. People at one time thought the world was flat and likely for a long time, until they had the tools and leaders for proper research. Mr. Mallitt still lives in that time, so to speak, when people thought the world was flat. The NIH should choose a leader without psych bias or progress with the disease within the NIH, will likely go nowhere for another long while.

  23. Jo Best says:

    The World Health Organisation classifies fibromyalgia as a soft tissue disorder.
    Is this another case where U.S. does not comply with W.H.O. classification?
    I find that doctors with these biopsychosocial illness beliefs seem to be confused.
    It’s strange that Dr. Wallit gives as an example that understanding the key role of insulin in diabetes transformed the whole illness and allowed for people to become better, yet does not to seem to realise that this will be the pathway for diseases like fibromyalgia and myalgic encephalomyelitis (WHO ICD-10 G93.3) once a properly scientific research strategy is undertaken in a systematic and dedicated way.

  24. Clare says:

    Just WHAT is the point of someone with these views leading such an investigation, have they learned nothing from the controversy of the PACE trial? How will any outcome have any trust from the ME/CFS fibromyalgia community. This is a truly precious opportunity to get some real answers and this man and his views have no place here! The damage continues!

  25. Rosie says:

    Of course this man cannot represent or head up any serious investigation into the neuro-immune disease ME. It would be absurd and wholly immoral. It would also act as a very clear indicator as to the view the NIH takes of this disease and its sufferers. It’s the equivalent to the victims of historic sexual abuse in the UK refusing to work with a number of proposed Inquiry chairs on the basis that they couldn’t be trusted. People with ME have similarly been abused by health organisations and personnel for decades … we too are victims of historic and contemporary abuse simply due to the misfortune of having this disease. Whomever heads up NIH studies into ME must be squeaky-clean… this man is clearly as grubby as they come. Get a grip NIH… just roll over and realize that the days when you could do this to the ME community are now over. People outside the community are watching now.. this is the time when you have to step up to the mark, relinquish those vested interests you have worked so hard to maintain and say ‘this is a new dawn, a new day and from here we’re doing it ‘right’.’

  26. NB says:

    After watching Dr. Walitt’s video on fibromyalgia and learning his views on ME/CFS, I’m now concerned NIH plans to study a second unspoken hypothesis. Inclusion of the FMD group and Dr. Walitt who supports an ‘all in the mind’ perspective makes it clear there is an additional hidden agenda. ME/CFS patients are not naive, quite the opposite with scientists, doctors, attorneys, journalists and other professionals scrutinizing what is being done here. But we ARE sick and need your help.

    Doctors like Dr. Walitt who are committed to (unproven) somatoform theories hold research back because they cannot think beyond their own biases. If you’re stuck there and refuse to look, you will not find. The scary thing is even when biologic abnormalities are found, they find a way to spin it back to a “mind/ body” explanation. I fear any findings will be explained away or met with skepticism. I don’t understand why he would want to lead a biologic study when he believes this to be a somatoform condition.

    Dr. Walitt is not only biased but also uninformed. Multiple studies have found small fiber neuropathy in a large percentage of fibromyalgia patients and it may be more because the testing available for SFN is imperfect. These findings can absolutely explain the pain and autonomic symptoms fibro patients experience. As a rheumatologist and researcher for the NIH, Dr. Walitt should be well aware of these findings.

    If I were a patient in the NIH study (can’t because sick over 5 years) I would not want to interact with Dr. Walitt. Doctors like him are our worst nightmare and he represents exactly what countless patient advocates have worked so hard to fight against. He’s too biased, has potential to do great harm to the ME/CFS community and represents a conflict of interest. He should be removed or recuse himself from the study and if there are others like him, they should go too.

    Also, I cannot think of one good reason for inclusion of the FMD group. No one can say with certainty that group does not have underlying organic disease and you may end up with confusing and hard to interpret results. I have heard no good explanation as to why a “psychosomatic” group is being included to begin with.

    If NIH is committed to getting at the root of this condition and is going to invest lots of money to do so, make it a clean study and one that ME/CFS patients can feel good about and have confidence in. I’ve been sick from age 24-43. My entire adult life has been ruined by whatever this illness is. I have abnormal CPET, skin biopsy, QSART, tilt table and other autonomic testing. Something is wrong. Please dispense with the psychobabble and help discover what it is so we can have our lives back.

    1. Janet says:

      I think his appointment comes down to the NIH Director, Francis Collins, when he said “Medicine needs new ideas”. I fear this is what he meant and it is going to be quite a battle to now change the ideas behind this study. The co-horts in the study say a lot.

  27. Leslie Little says:

    Anyone who believes ME/CFS is psychosomatic is misinformed and clearly has not read the current research, which finds many biochemical changes in people with this illness. I cannot understand how any institution can call its research ‘science’ when it appoints a lead clinical investigator who obviously does not believe in facts, research and the scientific process. Please, in the name of science, and for the sake of the many people suffering from this debilitating illness, remove Dr. Walitt from this study and replace him with someone who has kept up with current research and understands this illness.

  28. karen says:

    He either hasn’t met people with Fib/ME/CFS or those he has met have been wrongly diagnosed. I know, I can’t just change my narrative and then be cured. I know because I have tried to live as if I am healthy. I started moving faster, being active, reading, watching tv, not taking break, no pacing etc. I had a serious relapse. I have had CFS for 11+ years and nothing I have done has gotten me even close to my previous healthy state. I can through carefull management of my limited energy, keep my symptoms at a barable level. That man is gonna damage many lives.

  29. Anna says:

    And they wonder why the suicide rate is so high for ME/CFS sufferers. Perhaps they should also get someone in charge of the study to test the old ‘wandering womb’ idea. If bias is built in by the leads, there is no point wasting money. I predict they will find that CFS/Fibro and Chemo brain sufferers should all undertake GET, and that if it makes them worse it’s because they have ‘unhelpful beliefs’

  30. Diane Kirk says:

    This is extremely worrying. To employ Dr Walitt in this role comes across as a cynical move by the NIH and will alienate patients. He clearly knows nothing about M.E and chooses to deliberately ignore valid biomedical research.

  31. Laura says:

    I have been belittled, ignored, dismissed and worse for more than 15 years due to having ME/CFS and having the nerve to seek medical treatment. However, reading this article about the beliefs of Dr. Walitt has left me stunned. If Fibro and ME/CFS are psychosomatic illnesses, why do the psychological treatments NOT WORK – on thousands upon thousands of people?!

    Dr. Walitt must be removed from the upcoming NIH study. He has already reached his conclusions, despite the objections of an enormous patient community – objections we have been expressing for decades. Does he think that the millions of people with Fibro or MS/CFS are lying or delusional? Really…? MILLIONS of us?

    What happened to “At first do no harm?” NIH: Please show the patient community that you are taking are illness seriously. Please remove Dr. Walitt from this study.

  32. Peter Kemp says:

    Yet another glib, narcissistic medico pontificating on illness that he obviously has no intention of taking seriously. IMO, even if he is not already rolling in insurance company money, he has his eye fixed firmly on that gravy-train. His views disqualify him from conducting any research into Fibromyalgia, CFS or M.E.; why research them when he already ‘knows’ what they are and how to treat them? It would be a futile exercise in going-through-the-motions for such a bigot.

  33. BurnA says:

    The NIH need to issue a statment explaining clearly why Dr walitt was appointed to the role. They then need to explain why his previous statements won’t make him biased in any way. Dr walitt needs to explain Clearly what his beliefs are and why he wants to be in the position he has been appointed to.
    He should also make a statement about the PACE trial and what his views on CBT and GET are.

  34. Simon O says:

    I thought MIH had announced the intention to work *with* patients on this important study? So why then would you appoint someone like Dr Walitt, who clearly believes that CFS is a somatoform disorder, to be the lead investigator? It doesn’t make any sense. As Dr Walitt has clearly prejudged the issue, choosing to ignore the objective evidence of abnormalities that already exist in favour of an unproven somatization theory, why would he even have any interest in this study? Presumably he doesn’t expect to find anything. So who could possibly think it a good idea to appoint him to this post? It is perhaps worth pointing out that a great many conditions, such as epilepsy, MS, and Parkinsons, have all been dismissed as ‘somatized’ in their time – until further research identified their physical nature. All the signs are that this story will be repeated with ME. But research investment has been so little so long that the journey is just beginning. Now we need a captain in charge who at least believes in the voyage – and who has the confidence of all those many whose future depends on its outcome.

  35. Janet says:

    I am afraid we have to look at Ian Lipkin now. He has stated that he believes that some mental health issues are due to viruses and I actually think that is a valid hypothesis but I fear he has set out to help prove this theory using the NIH CFS study. We have to question everyone’s involvement at this point.

    On Dr. Oz he did not come to the “defense” of the patient who was diagnosed with ME/CFS yet her family and doctors believed she was suffering from mental health issues. He did not clearly state the co-morbid factor stemming from dealing with a chronic illness with no bio medical interventions and having mental health support in ANY chronic illness (MS, ALS, Parkinson’s, Diabetes, etc.) is necessary.

    I also don’t think we have anxieties or depression any more than the usual chronic illness population. There isn’t a depression or anxiety drug they have not tried on me, completely failing on all and a disaster on one. Only one dirt cheap and many decades old anxiety drug has worked on me much to the surprise of my Rheumatologist. Pinpoint accuracy of an older psychiatrist who is also informed on Fibromyalgia, CFS (though he claimed to be no expert) and the anxieties that come with dealing with our diseases was what helped me.

  36. Martha says:

    It is difficult to see a good reason why the NIH have appointed Dr Walitt as lead investigator of this study. Do the NIH, as well as Dr Walitt, believe that ME/CFS is a psychiatric condition? If they do, and this is the premise on which the study is going to be conducted, then the study is going to be an irresponsible use of public money, as all other such studies into ME/CFS have been.

    Dr Walitt says “the medical system can’t provide the answers that [patients] want.” It is not the medical system’s job to provide the answers patients want; it is the medical system’s job to provide the right answers. We do not have those right answers yet for ME/CFS, and wild, unverifiable conjecture such as that contained in the interview above is a poor substitute. What makes the conjecture worse is that psychiatry’s intervention to date in managing ME/CFS has been either useless or harmful rather than the reverse.

    Dr Walitt needs to step down. The understandable scepticism the patient community felt when this study was announced is rapidly turning into a deep suspicion that the NIH have an entrenched view of ME/CFS as a psychiatric disorder and are incapable of designing a study that is not biased by that view from the outset.

  37. Maria Berger says:

    I cannot for the life of me understand why this type is attitude continues to persist with respect to this illness?

    When you have such a large patient population expressing their experience of the same symptoms, the same pain and fatigue, but you can’t find the answer, your response should be to think you don’t have the technology yet, or that you don’t fully understand the body well enough yet. Not that over a million people are all making it up.

    For God’s sake, actual mental illness is recognized as having a biological basis!

    I understand that he is taking a more progressive stance toward the mind/body experience in some ways. However, that is only valid if he applies it across the spectrum to every illness, including cancer, heart attack, stroke, etc… if he believes ALL illness is a way of experiencing the difficulties of “just being human”, and a way for your body to tell you to slow down, then fine. Go with that in all of your treatment protocols. But, his statement regarding diabetes shows he does not apply this to every illness at all. Only those he can’t understand.

    It is so incredibly belittling to have him involved in the study. I honestly just can’t believe anybody thinks this way anymore.

  38. Brain Walitt
    National Institutes of Health
    10 Center Drive, Room 4-1741
    Bethesda, MD 20892-1302
    brian.walitt@nih.gov
    re: Fibromyalgia
    Hello Dr Walitt;
    I just finished watching your interview on ” Fibromyalgia doesn’t fit the disease model By: M. ALEXANDER OTTO, Family Practice News Digital Network September 30, 2015″ and reading the negative comments generated by your appointment as lead clinical investigator for the NIH’s new intramural ME/CFS study by people with or associated with Fibromyalgia and ME/CFS.
    I believe, I have a unique perspective and wanted to share with you my thoughts. I am a Licensed Professional Counselor, nurse, chaplain, and professor at a university. My husband
    Dr William Sheppard, also has a similar background, and we both have specialized in trauma and are certified in EMDR. We have a counseling practice in Fort Worth, Texas and see many patients with complex PTSD, chronic pain, fibromyalgia and ME/CFS.
    When a patient comes in and was diagnosed with fibromyalgia, for example, I explain that the symptoms that go along with this diagnosis and how the normal way the brain will respond to the symptoms. I emphasize that chronic pain is a pain that currently, medical science has not come up with a cure so it has to be managed. The brain doesn’t understand this and will keep signaling you to move in order to fix the problem causing the pain. Because science does not have a solution “right now” but is still searching, we can do things to manage this pain by retraining the brain. I help them manage this pain by building new nero pathways through many different techniques. I help the patient to become aware of what they are saying to themselves about this pain, and how to be with the pain and even some techniques that will even help reduce the pain. I explain this is not a cure for fibromyalgia because science does not even understand currently what the biological cause is, and until they do they can only treat the symptoms and many of the medications we currently have are not very effective, but by working with their doctors it can help manage this disease. I believe those patients who stick with the brain training really benefit from it. The problem is many times they are too sick to make it to their appointments consistently.
    I have studied the research on fibromyalgia and ME/CFS more than the average medical professional because you see about 15 years ago I was struck down with this disease. I have personally chosen to call it a disease, because it is my belief that through research it will be found that there is a biological problem that is causing this group of symptoms. I have also watched as four more of my six sisters have been struck down with this disease. Being the oldest of seven girls, I was very careful to not allow them to know much about what I was diagnosed with and the affect it had on me, at first. I did not want to plant any seed in their brain that they might develop this disease. This has been very hard to watch the affect this has had on my loving, healthy, hard-working, vibrant sisters but one by one they came to me sharing their diagnoses of fibromyalgia by different doctors across this country, experiencing the same symptoms.
    When I first experienced the symptoms of fibromyalgia, I had come down with flu like symptoms that was diagnosed as a virus. I never completely recovered. My strength was very limited, and I was in constant pain. I was determined to beat this diagnosis and right away I took a biopschyosocial approach. I excluded sugar and ate a very healthy diet, exercised daily, got plenty of sun, used a sauna, massage, heat and ice. I went to a endroconologist, neurologist, pain management specialist. I eliminated stress out of my life and learned to change any negative thinking patterns. I was at peace in my spiritual life. I tried different vitamin and supplement combinations. This of course took many years, and did nothing to help physically but did help my mental outlook. I continued to have less strength, more pain, and more brain fog. I had to quit my nursing job because I no longer had the strength. I went back to school and took as many online courses as possible and became a licensed professional counselor and chaplain. And I realize I am one of the very fortunate one’s because many patients do not have the strength to do this much.
    I love my job in helping people. I sit in my office with ice packs and a heating pad and always wear soft clothing. I take prescribed medications, and continue my own brain training, and exercise. This is how I manage my debilitating disease that has robbed me from time with my children and now grandchildren. I would do anything to change this. Sometimes there is no pattern to this disease that I can find. Although my strength is very unpredictable and sometimes I might have more strength, which enables me to do more but causes more pain. This disease I am convinced, by my own research, my personal experiences, and through the stories of my patients, that something within our bodies, biologically is not working normally.
    When my husband and I saw your article it made us both very sad and angry (which of course, I understand now it is my emotion and my problem not the other persons). But I know how your words although, I believe unintentionally hurtful, hurt a lot of people struggling with this disease. I believe, I understand what you were trying to say but I know most people who are struggling with this disease. that are not in the medical field do not understand. They want to hear you say that this it is a disease. When the word disease is used, but medical science just hasn’t found the cause for your disease; this would bring a great deal of comfort to people. They want to hear researchers are looking for the cause of this disease and that it does fit into the medical model, under diseases that we don’t understand the cause, therefore, have no cure. But as their doctors, you can help them manage the symptoms of their disease.
    Labeling fibromyalgia as a disease might not fit in the medical model, as being “politically correct”, but it would help people with feel, they are being heard and understood. This would bring much comfort and understanding because your words are powerful, as an expert in the field.
    Also I want to thank you for your work in this field.
    Respectfully,
    Reva Sheppard, LPC
    1533 Merrimac Circle, Suite 101 Fort Worth, TX 76107
    Email: revajo@hotmail.com
    website: uccsolutions.com

    1. Rev. Allyson K. Day says:

      You have written a wonderful, earnest, professional letter to the, ummm…., good doctor. Having been sick since 1986, and a past mental health professional all I want to say is that, Brian Walitt is an arrogant asshole. And the NIH picked him so he could continue the government cover up. Being retired and totally disabled now, this is the best professional statement I can make.

    2. barbara says:

      Reva Sheppard, despite your polite, valiant attempts at understanding and accommodating Dr Wallit, sufferers are not looking for a ‘placebo’:- they not looking merely for the comfort of having their illness called a disease by Dr Wallit. They already know this.

      They want an expert clinician who already understands the obvious, does not patronise them, does not shiftily talk in nebulous pseudo-psychological terms, gets stuck into research and is basically on their side in wanting to uncover the causes of this illness or spectrum of illnesses. A passionate advocate.

      Making excuses for him does not help anyone. You were/ are indeed fortunate to be able to lead the reasonably full (albeit impaired) life that you do. Many sufferers cannot.

  39. Kim says:

    What an idiot. I bet if he stubbs his toe he puts ice on it and howls like a baby.

  40. Lisa barrett says:

    Stupid sad little man does he really think people with this crappy illness wants to waste their life go to doctor all the time and not being able to work because of it

  41. Donna says:

    This ignorant tool needs to explain why Rituximab is working for over 60% of patients in the current drug trials for CFS in Norway (and placebo is working for basically none of them).
    Because guess what? B-cell destroying drugs don’t treat somatoform diseases. They treat autoimmune diseases.

  42. Cheri Martin says:

    This has to be another government backed wind up right? Any twit knows these illnesses have biomedical markers so his theory has no actual grounding. Is cancer just a range of normal? NIH you are are complete laughing stock of idiots if you think the public cannot see through your pathetic attempt to not engage in real clinical research. This perpetual neglect and abuse of patients is beyond inexcusable and is in fact criminal. Quit this psychobabble rubbish and get to the real juicy science behind the illness that the world is waiting for with baited breath. Your apologies won’t cut it it’s time for action now!

  43. acer2000 says:

    If it is true and Dr Walitt is in charge of this study we might have an American version of PACE on our hands. I can’t believe after watching that video that this guy can do a good job on this research, let alone be in charge of this study. I have said this before, but I really wish they would have just given the money to Dr. Davis at Stanford, or many of the other qualified investigators that have proven they are studying this illness for the right reasons and know the reality of it. NIH needs to justify the appointment of this doctor fast and if they can’t, he needs to be replaced.

  44. acer2000 says:

    I’d also like to add that ME/CFS has already proven to not be somatoform. That was the whole point of doing all of those v02 Max exercise studies. Patients who have psychological issues that cause fatigue don’t score low on exercise tests. And they certainly don’t get worse on the second test (PEM). Patients who are physically ill with something causing fatigue do. The research showing this has already been done. Perhaps Dr Walitt should do a pubmed search.

  45. Sharon says:

    About the last paragraph of Brian Walitt’s final response (in the video):

    His quote:
    “When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh, people with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred *that* way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred *that* way. Uh, taking a one-size-fits-all, or using your own judgment of what is legitimate, uh, is often not helpful in treating people with fibromyalgia, because it’s really about what *they* think is legitimate.”

    Can anyone else think of any other disease (other than FM and ME) in which an excellent, experienced and responsible medical doctor would describe his or her approach to treating a patient – a human being – in the same manner described by Dr. Walitt? His statements in the interview are outrageous, disgusting, ignorant, and barbaric. They are an affront to reason.

    The aforementioned September 2015 video interview with Walitt is publicly available, as are his many papers and slide decks. His philosophy and conclusions are no secret and have been clear and consistent over many years. It is an outrage that NIH appointed Walitt as lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome” given his beliefs and track record. NIH must remove Walitt from this position immediately and appoint a competent and unbiased scientist in his place.

  46. Steve says:

    Someone who has already decided what is wrong with ME/CFS/FM patients has no place being in any way involved with this investigation, especially not as lead. He has clearly already decided what the problem is, and would likely spend the bulk of his energies trying to support what he already believes is the truth. If you give him this position you are dooming us all. I’ve already lost half my live to this thing, I don’t need an asshole like this working on my health problems.

  47. Chloe says:

    Appointing Dr. Walitt as lead clinical investigator is a grave insult to the ME/CFS community. The decision flies in the face of the NIH P2P report, undermining the reputation and credibility of your organisation. Dr. Walitt’s beliefs are unfounded and go against the body of peer reviewed research and medical evidence, including decades of autopsies, discoveries of immune abnormalities by Lipkin and Hornig, Rituximab trials by Fluge and Mella, and more demonstrating abnormalities in the central nervous system. ME/CFS has been recognised as physiological by the WHO, the IOM and in the NIH’s own report. How can the NIH declare an urgent need for biomedical research for our illness and then appoint Walitt? How can you give us hope and take it away like this? Please reconsider the appointment of Dr. Walitt. Please give us hope again.

  48. Jamie says:

    I will be the first one to call for a stop to any trial that Dr Walitt is involved in. As soon as I saw the control groups it was easy to see the fix was in. Lyme and ‘Functional Disorder’ controls? Couldn’t you find anything more controversial and difficult to diagnose?

    If Dr Wailitt has a sincere desire to help us, he will remove himself completely from any study of our disease. His involvement void any trust in the study as a whole. Anyone trying to sell us on him will automatically be distrusted and harm what we all should want, the restoration of the NIH’s reputation relating to ME/CFS.

    I was a teenager back in the 80s when one day everything changed, I naively thought the scientists were working on the problem. They’re supposed to be the good guys. I can’t believe we are still having this fight.

  49. Luna says:

    Wow, I wish I lived in the USA. Where owning a gun is allowed. It would be much easyer to kill myself. So sad that ‘I think’ and ‘I believe’ stands above ‘it’s proven that in foreign research’. Wish you all the best and truly hope there are professors fighting windmills as wel, to find out more. Research on cancer doesn’t stop ether!

  50. justin says:

    I am in utter disbelief….so sad that they do this to us. I personally believe they know how sick we are. They know how much it will cost for testing of us and all of our commorbidities. They know that the cost to develop and treat us with drugs will be too high. They know that we live long in agony. They know, but if they know and keep pushing the psychobable BS they know they wont have to pay….its an absolute disgrace to human kind and an utter joke that the NIH would put someone like this to head the study unless there was some political agenda. Francis Collins knows the devestation caused by ME but he isnt at the very top……

  51. justin says:

    MEACTION so what are we going to do with regard to them having this individual to lead the study?

    Are we just going to accept it or do something about it Petition, letters, emails, etc?

    This just blows my mind when i see the potential for bias to be added to a study as important as this…..

    1. #ME Action says:

      Many versions of a petition have been submitted. We’re working to reconcile the ideas into a single petition.

      1. Els VH says:

        Please don’t forget Dr. Gill ‘s role in this “study”.
        There’s not 1 but 2 people on board at NIH/NINDS PI-CFS study, who are biased (to say it politely).
        They should both step back.

        And NIH should start gathering that “patient committee” they talked about. Soon.

        Thank you for all your HARD work MEaction.net group!

      2. Justin says:

        Awesome thanks for responding.

        So a petition had been sent? Another is then being developed?

  52. sarisat says:

    There must have been hundreds of eminently qualified, unbiased researchers who would have jumped at the chance to roll up their sleeves and start getting to the bottom of this terrible illness. And the NIH chooses someone who has already shown himself to be ideologically wedded to an explanation of the illness for which there is no evidence at all. It’s a very bad joke. Shame on the NIH.

  53. N.A Wright says:

    Several replies have noted the relevance of PACE and the need to learn from it; this applies to patients as well as researchers. Levelling insults at a researcher with whom you do not agree is certain to result in sympathy for both the researcher and the views they hold, from that researcher’s colleagues and wider peer group. Even if the person who is the subject to the angry protest is not popular (and they may be) with colleagues, the sense of being attacked very quickly unites into a group think which at the very least is bound by a “if her/him now then maybe me next”.

    Walitt may have a perspective on illness that is not helpful to the progress of ME/CFS research – in which case that perspective needs to be challenged and Dr Wallit’s role in directing ME/CFS research needs to be made explicit. But it’s the perspective and the role that must be targetted, not the person. Personalisation of the anti PACE campaign was a huge tactical error on the part of some patient advocates, it exposed all challenges to PACE to vulnerability via the characterisation of harrassment. It’s a trap no one need step into again; ME/CFS advocates are intelligent enough to understand that the public relations landscape isn’t based around fairness, it’s about how campaigning and advocacy are conconducted.

    1. Jennifer Brea says:

      I couldn’t agree more. It is incredibly important to avoid personal attacks and name calling. They are also completely unnecessary: our concerns about scientific integrity and study design can speak for themselves. I also think it’s important to better understand what his role is in this study. That said, even if it is purely bureaucratic, for the sake of building trust with the community, this was a terrible choice.

      1. Els VH says:

        I think people can call names. Literally.
        When those “names” say ugly things about a group of vulnerable people, one must speak up.
        And yes, call that person by his or her name.

        The way or manner to speak or write is another thing.
        I find capital letters, lots of explanation marks, abusive words, swearing, … annoying and not done.
        As it doesn’t give anybody the idea they are dealing with a well-balanced knowledgeable person.
        And that reflects on the whole community.

        But I do get it that patients need to vent their outrage, their anger, their feeling of betrayal, …
        That’s where FB patient groups and forums come in.

        If that venting of ideas and thoughts and rage results in 1 thought through, well documented, balanced, reasonable, common action … well, then the venting, the saying what people feel and think etc become something constructive. Something those setting up that action can start from.

        Once the common action starts, the group should better support that action and keep personal thoughts private if they agree with the action taken.

        In this case, the words and thoughts of both Wallit and Gill are clear. It’s not “hear say”.
        Their attitude towards the disease they are going to “study” under the NIH umbrella, is in sharp contrast with the supposed goal of that study.

        They should be named. Or rather, their words and writings should be “outed”.
        In a manner as polite and balanced as humanly possible.

      2. Simon Goodwin says:

        Anyone know if this guy actually has a publication record for CFS/ME? If not, why has he been chosen over researchers with proven track records?

  54. Tanya Selth says:

    I lost my trust that these people (NIH) were going to do the right thing way back so I’m not surprised at all by this latest.

    If we had cancer and that was being studied, would they get in a lead researcher who didn’t even believe in cancer to do a serious study on it? I think not. So why go and do this to us?

  55. Rachael M says:

    Oh dear, how upsetting and frustrating to think this man could be leading research into my illness.
    Please get this man out. He has no idea.
    Listening to the people who are suffering would be a good starting point.

  56. Samantha says:

    A note to administrators,

    I would love to petition against this, but don’t have a platform for getting signatures. Could you start a petition to the NIH regarding his position/influence in ME/CFS/FM research?

    1. #ME Action says:

      Yes, we are working on a petition! We have gotten a submission on a few different versions that we are working to reconcile. You can also create a new petition here: http://my.meaction.net/petition/new?source=header

  57. Els Vergauwen says:

    I normally am Dutch speaking so I hope I can express my anger here in English. As a ME sufferer for years, I totally agree with everyone opposing to this man. His ideas put millions of sufferers round the world 15-20 years back in time. What is this, even back to the Middle Ages ????? Back to these terrible PACE-theories ?? As if we are all faking a disease that nobody believes exists ? Really ???? If he claims my head could make my body feel THIS SICK, “dealing with life” (!?)then I’m sure I could also reverse this process, couldn’t I ???? And believe me, I HAVE TRIED, MY GOD, HAVE I TRIED. Exercises, psychiatrists, all kinds of doctors in every domaine, diets, supplements; the only thing I didn’t try was start hugging trees.
    Take this man as far away from this study as you can ! His words could have been taken seriously 20 years ago, now not any more !
    Everybody please don’t lose courage !
    Els Vergauwen. Desperate cry from Belgium.

  58. Alison says:

    This guy is a wacko! I am a very spiritual person and I love working out. I was into body building when I got sick with CFS, pleurisy, pericarditis etc, this stuff doesn’t come from your mind, my mind wouldn’t want me to have fluid around my heart and lungs, it is clearly an viral type thing. I also wouldn’t want to stop doing my workouts, in fact I kept pushing to do it thinking I can push it away….NOT! I also have deep faith I’m my God and ……No improvements! This guy needs to get out of the picture fast or we will be fighting this thing without understanding for many more years. By the way my mom, sister, daughter have fibromyalgia so it’s not just a mind thing!!!

  59. Sarika Patel says:

    Dr . Wallit MUST not be in charge of this study. We cannot afford any more time and people who do not get this disease OR have the expertise. Is DR. Nath aware of his views? What is the best way to protest this? And soon.

  60. Luna says:

    What the hell… I am a 23 year old female and my social life has been hit, my work life has been hit. everything around me has suffered from having CFS. I was only diagnosed with it last year, after years of feeling sick, not being able to stay awake for long periods of time and constant distrust with my body. the pain alone is nothing to be laughed at but the simple fact that this man thinks that CFS is nothing but psychosomatic is just pathetic. I have had this condition for most of my life and I wont let some uneducated asshole turn around and tell people that it is “just apart of being human”…. I am on more medication than a 23 year old should be on. I don’t have a full time job and I struggle with this every day. Most days it is impossible to function even a little bit. Trying watching your body do something that it shouldn’t do…. try having the effects of this just for one day… I can tell you now you would have respect for people like us… it sickens me to see the lack of respect from someone who obviously got their certifications from a lucky packet.

  61. JohnnyD says:

    How can it be? How can the NIH be informed by the IOM and P2P reports, and take a year to come up with potentially the most important ME/CFS study ever and have Walitt, an illness denier, as the principal investigator? It makes absolutely no sense.

    1. Els VH says:

      I can only think of a couple of things:

      – NIH bureaucraticy: he and Mr Gill were in line for new career moves?

      – dread to say it :
      purely biomedical studies are still a “no no” for NIH? Mental component needs to be in there?
      Wallit would be the perfect gate-keeper for that job?

      The Reeves criteria “error” could have been “a premature release” as they said,
      or it truly could have been the intent if patients wouldn’t have protested so hard …
      One error? fine. Can happen to anyone.
      But Reeves Error, then Wallit and Gill, …???

      We’re a lot of things, but stupid-blind-deaf we are not.
      They should know by now.
      Let NIH explain itself.
      Take it from there.

      1. jamie says:

        I think it’s a very valid concern, I’ve been keeping my fingers crossed that we had crossed a tipping point but after decades of following this and other political stories, the big question has always been who is the real power behind this fight to keep us in perpetual limbo?

        Usually the answer is follow the money when politics are involved and the Pace study shows their conflicts of interest with insurance companies and their NHI.

        I do think there are genuine players involved now but somebody picked this guy and these controls and obviously want a certain outcome. Is it the Insurance Lobby? I don’t know. But it’s been going on too kong and I resent being told to trust them, play nice, this time it’s different.

        Over 25 year of this BS and I don’t have the patience. If this goes through we will be worse off than Great Britain. I’m fighting this for all the kids who haven’t gotten this disease yet. My life is basically done so it won’t affect me accept to maybe give my life story a little dignity if they step up and do their jobs.

        It’s funny I sound like an angry radical. In my real life I am the peacemaker, This is just too much for too long.

        1. Carol Carlson says:

          Anne, thanks for reply.  What you have written has been done ad infinitum by patients and advocates and where has it gotten us all?  Not taking away from your post; it all needs to be said over and over again.  Frustrating and demoralizing.  And yet can’t stop trying to move forward.  I get that you are speaking from the place you find yourself.  I really thought the psychosomatic thing was finally put behind us and now it’s rearing its ugly head again in the form of Wailett.  I wonder what hole did Collins pull him out from?   Carol

        2. Els VH says:

          Jamie, you said it: “insurance” … The ties between a lot of proponents of psycho-social, wessely, cbt/get etc and insurance (govt and/or private … unum for example) have been established and proven more than once.

          Then there is the “prestige” factor of psycho-social adepts vs vilification of doctors who want to really do something for us (Myhill in UK & i know several in BE too …) . Even knighthoods are given to group 1!

          Taken together there’s a lot of power & influence going round at high places.

          That’s why this keeps dragging on, despite the MORE THAN OBVIOUS flawed PACE, despite support from a lot of researchers, despite petitions signed by thousands, despite decades of advocacy.

          And every time we think we’re getting somewhere, every time our hopes go up, every time we got real evidence of neglect, misinterpretation, flawed studies, … there they are … masters of spin, masters of media, strategically as sharp as Napoleon.

          1. jamie says:

            It would sound like a conspiracy theory if it weren’t happening in so many aspects of government in so many areas. It so commonplace especially after Citizens United that it’s to be expected. Hell, It’s what the whole Bernie Sanders campaign is based on, get the money out of politics so we can actually govern for the people.

            We may have a large group of PWME but most of them aren’t even diagnoses or aware of the history of their disease or well enough to protest. We have no lobby of out own, the public isn’t on our side as they have been fed falsehoods from the start, only a small group of doctors know this disease. How do we possibly fight the invisible force behind this never-ending battle?

            Your right, the PACE trial should scare the crap out of us after learning more about this investigation.

  62. C B says:

    Dr Wallit is clearly the wrong person to be heading this study. The whole study & the lives of many sufferers will clearly be detrimentally affected if he heads the study, a highly qualified unbiased head is desperately needed to replace him as soon as possible.

  63. Bianca L says:

    This is outrageous, totally UNACCEPTABLE. Mr Walitt clearly has exceptionally strong preconceived notions and very firm bias in an extreme direction regarding ME/CFS. His personal beliefs on this make him highly inapproproate for this task.

    Mr Walitt is most definitely NOT THE RIGHT PERSON to be involved in this crucial project.

    Listening to his talks, reading his articles, I can’t help getting the impression that he is either totally unaware of the biomedical literature on ME/CFS (such as the IOM report), or he is purposefully ignoring/denying it. Either way, this is not the right person for this job.

    Mr Walitt, and every other person on the team with similar psychosocial/psychosomatic/philosophical beliefs regarding ME/CFS, HAVE TO BE REPLACED IMMEDIATELY.

    This project deserves knowledgeable and open minded people who are deeply curious and passionate about making new BIOMEDICAL discoveries.

    I’d be very interested in hearing the rationale behind how and why people like Walitt and Fred Gill were invited/allowed to be involved in this project in the first place.

    Also, the FMD control group has to be replaced too. There has to be a better BIOMEDICAL option.

  64. Bjorn Diego says:

    Terrible. Makes you wonder how many patients this man has ‘treated’ and hurt by convincing them that their illness is psychosomatic. The word psychosomatic alone makes me shudder as it reminds me when I was first getting diagnosed and all the disbelief and accusations I had to face.

  65. Mary Barker says:

    Dr. Walitt should not be allowed anywhere near this study. If the NIH is at long last acting in good faith with regards to CFS/ME as they want us to believe, then it will listen to the patient community and remove Walitt.

  66. Denise says:

    Dr. Brian Walitt should definitely NOT be appointed. His beliefs contradict all the scientific evidence of the past decade for the physiological pathologies of ME/CFS… and help us to go backward, not forward with the search for a cure!
    Dr. Walitt should have to live with these diseases for a year before he makes his statements. He needs to really do his homework first too! Please remove him from this position with NIH!

  67. Valerie Mallinson says:

    Hey, NIH: By choosing this person, you are continuing to be a part of the problem rather than a guiding force for progress and positive solutions. Why do you insist on keeping research on this disease in the dark ages? Biased, ill-informed practitioners have no place in this important work. As a person who has suffered from this disease for 29(!) years, I can tell you that the willful neglect, public malfeasance, and malicious ignorance of the medical establishment toward those of us with ME has caused far more mental anguish than the physical pain and suffering of the disease itself. It’s ill-advised; worse, it’s shameful.

  68. Flo H. says:

    Dr. Walitt’s condescending generalizations are very disturbing examples of pseudoscience. I shudder to think that he might be involved in an NIH study. I hope the NIH will replace him with a respected scientist.

  69. Carrie says:

    I’m sorry NIH, but your cognitive bias is showing and you need to know patients worldwide are thoroughly sick of this type of nonsense. How silly would NASA look in 2016 if it appointed a declared member of the Flat Earth Society to study what sort of cheese the moon is made of?! Wallitt has already renounced decades of biomedical evidence in favour of his own bizarre theories on Fibromyalgia, and now NIH has condoned these delusional rantings by appointing him clinical director of a new study into a disease he will also believe to be psychosomatic. If you are genuinely interested in post-infectious “CFS”, please replace Walitt immediately with Dr Judy Mikovitz – a scientist with an impeccable publication record, immense personal integrity and huge passion for finding the actual truth about this disease – no matter how politically inconvenient that truth may be. In addition, you need to be aware that studying post-infectious ME/CFS patients is still an inadequate approach – ME/CFS needs to be studied as a potentially INFECTIOUS DISEASE that is still spreading and wrecking numerous lives. I have been ill since 1983, contracting ME during a documented epidemic in New Zealand. I have now lost nearly 33 years to this illness, and over time more and more of my close family members (notably those who lived under the same roof as me, and including non-genetic relatives) have also fallen ill. I know of other people who lived nearby (including someone who ate regularly at my student flat after I got sick) whose own lives have since been decimated, or who may have become healthy “carriers” whose children have subsequently been affected (or should I say infected?). I recommend all ME/CFS scientists and patients read “Plague” (Kent Heckenlively & Judy Mikovitz) and “Osler’s Web” (Hillary Johnson). The psychobabble, cover-ups and corruption that have been going on for decades need to stop right now before this disease spreads any further. Your own families could be next! As Dr Nath has already strongly hinted, patients may need to take a leaf out of AIDS Act Up Campaign to get their needs addressed – I suggest we start doing so now before we run out of loved ones who are still healthy enough to speak up on behalf of those who can no longer leave their houses or beds to attend protests.

  70. M.C. says:

    I was very hopeful about NIH engaging in finding a cure for the illness that stole my life. Reading Dr Walitt’s papers now terrifies me to the bone. In my opinion, what he says is beyond arrogance, misogyny and narcissism – it’s evil. I think it’s insulting. He does not seem to want to find answers that might help us. Why does he ignore all research findings? We do not go to doctors to discuss about narratives, we do not go there to hear what we want to hear! We go there because we desperately want to regain health. Are some of them really that small, that egocentric, that they cannot stand the situation of having nothing to offer? (By the way: Who is struggling with being a human being here…?) If doctors are unable to help, something is wrong with the patient?! If a physician prefers to look into the mirror instead of the patient’s face, doesn’t that show that he chose the wrong profession? How does NIH explain why the head of the planned research is someone who already claims to have all explanations and answers?

  71. J Alle says:

    Brian Wallit has no place in being involved with ME/CFS. He should read this article on suicides and patients diagnosed with psychogenic pain.

    http://dxsummit.org/archives/1002

  72. Dee VanDine says:

    This is not someone with an objective scientific mind, like the one we heading this project!

  73. Els Bakker says:

    Too many doctors have opinions, but are too lazy to keep up with scientific research.
    He should definitely NOT be involved as I doubt wheter and science will change his opinion.

  74. Justin says:

    HI MEACTION,

    Would it be possible to get the likes of all the ME/CFS Specialists in the US and throughout the world to right a letter and have them all sign it like they did with PACE. Ie. Klimas, peterson, montoya, ron davis, kaufman, bateman, chenney, kdm, myhill, etc. To remove the biased Dr from the NIH Study?

    Have a letter from them and a petition from us.

    Just a thought.

    It is as plain as day that something fishy is going on with this study and they trying to pull the wool over our eyes. They know we cant get up and make stink we are too sick. We are disabled.

    My thoughts with regards to standing up for ourselves is having some healthy a lobby group, friends, family, me/cfs’ers set up large TV screens at the white house and NIH with countless short clips submitted by all of us replaying about the devestation this disease has caused us basically what aids did accept using modern technology because our inability to get out of our beds or homes. Just a thought.

    I bet loud speakers and film clips would draw a ton of attention…..i dont know anymore I just want the pain and suffering to stop!!!!!

  75. cort says:

    If you look further into that paper (did anyone look any further?) you will find Walitt proposing a pathophysiological construct for what he calls somatoform disorders:

    We hypothesize that acute shifts in cytokines related to chemotherapy administration lead to epigenetic alterations. These epigenetic changes persist after the resolution of the chemotherapy-induced immunologic changes and are primarily responsible for creating and maintaining changes in neuroplasticity that underlie the somatoform experience of chemobrain.

    He suggests immune modulating agents be used as treatments

    Agents that inhibit cytokine activity, such as monoclonal antibodies and small molecular inhibitors, may confer benefit either alone or as an adjuvant treatment to chemotherapy-induced cognitive decline in cancer patients. TNF-α antagonists (etanercept and infliximab) have been shown to inhibit fatigue and improve depressive symptoms in patients with advanced cancer [101,102]. P2×7 antagonist that inhibits IL-1b release has been shown to reduce depressive-like profiles [103] and neuropathic pain [104] in animal models.

    He also talks about BDNF, SAM-e, histone deacetylases, etanercept and others.

    He also suggests that people with chemobrain following chemotherapy be administer a major physiologic stressor in order to figure out the biology behind the illness

    “We present a speculative but testable hypothesis of how cognitive dysfunction may occur following chemotherapy. Unlike other dyscognitive illnesses, it is both scientifically and ethically feasible to study the onset of “chemobrain” by administering a major physiologic stress and observing the biological ramifications. It should be possible to gain a comprehensive understanding of the mechanism underlying cognitive dysfunction in cancer patients. Such knowledge is critical to identifying methods to both prevent and treat cancer-treatment dyscognition and potentially other dyscognitive disorders.”

    1. N.A Wright says:

      >>”If you look further into that paper (did anyone look any further?)”<<

      I'm afraid that for many people what is in that paper (or any other that Wallit has authored) is of no relevance. All that seems to matter is that his views are not representative of patient expectations and that irrespective of his abilities as a manager of research projects, or his capacity to support and co-ordinate a research team, or his ability to bring research in on time and on budget or any of the other myriad skills of a good senior investigator, Wallit is condemned for views expressed in one particular context. Demanding the excommunication of researchers every time they express a view that is at odds with approved ME/CFS scripture is no way to set up a working relationship between patients and researchers.

      Wallit's talk on FMS is certainly cause for concern but the NIH (and perhaps Wallit personally) has to be given the opportunity to address that concern, and on the basis of the Chemobrain paper the NIH and Wallit would seem to have a sound basis from which to offer appropriate answers. Taking a position that assumes everyone who doesn't say what we want to hear is an implacable enemy is to miss the whole point of scientific endeavour. It is not a position that is going to receive sympathy from the main body of researchers (Jim Coyne ain't the NIH) and if we want ME/CFS research to be mainstream and sustained then respecting alternate views is going to be necessary. That doesn't mean rubbish work (PACE) has to be accepted without criticism but it does mean knee jerk opposition has to be replaced by considered engagement.

      1. Carol Carlson says:

        It is, in my opinion, not a knee jerk reaction.  We (advocates and patients) have very carefully considered, over these many years, that FM and M.E. are not psychosomatic “conditions” or “syndromes” or “it’s all in your head” problems.  When someone in the medical or scientific community makes remarks about a psychological or psychiatric determinant that is making the patients mistakenly believe their symptoms are real, that person or persons no longer are considered as having a scientific approach.  They come onto the scene as already prejudiced and deaf to the communications of the patient communities.

        1. N.A Wright says:

          “Some of us” rather than the all inclusive “we” might be more appropriate, but scientifically to decide it’s not X or Y in the absence of evidence for what something definitively is, is as prejudiced as the position that Wallit and others are accused of holding. To make this a ‘patients know best’ argument is to set up the whole principle of patient influence on the direction of research, for an inevitable and abject failure. Science isn’t about who knows best – it is about testing hypotheses; competing hypotheses may run in tandem for decades before one or other (or both) is set aside. The issue for patients is not which is right or wrong but which line of research appears to offer the best opportunities to answer patient needs. Where most patients would agree is on the issue of psychological interventions where considerable effort and expense has produced nugatory results and virtually no one on the patient side wants more tax dollars/pounds/euros put into chasing the CBT/GET mirage. But cutting CBT/GET adrift can’t exclude the possibility that neurologically mediated cognitive dysfunction plays a role in the pathology of some ME/CFS patients; it’s perverse to argue that ME/CFS is a neurological condition but that it can’t possibly produce perceptual impairment. The question is whether perceptual impairment is a useful line of research and that question is worthy of detailed exploration. Demanding the someone like Wallit who has begun to explore the perceptual issue, should have no role in dealing with queston of the value of perceptual impairment research is censorious in a way that most researchers would consider unacceptable, and many of Wallit’s colleagues would no doubt be greatly disturbed should he be sidelined because his professional views are not politically acceptable.

      2. Jennifer Brea says:

        I encourage everyone to contribute to updating this page: http://me-pedia.org/wiki/Brian_Walitt and if there is information missing or if his work has been unfairly represented, to expand the page to include a more balanced treatment of that work.

        Stepping back from the chemobrain paper, I think it’s pretty clear that Dr. Walitt is working in a certain, all too familiar tradition. I believe Julie Rehemeyer has reached out to him and other members of the study team for interviews. I look forward to Dr. Walitt clarifying his specific views and approach.

        * * *

        Dr. Walitt’s self-stated research interests include “pain and related interoceptive disorders (i.e. fibromyalgia, chronic fatigue)” and “social construction of illness and disease.”

        He is interested in studying “perceptual illness” which he defines as follows:

        “In these disorders, a person experiences a range of different bodily sensations, such as pain and fatigue, without any clear external cause. In some, these sensations can be bothersome while in others they can be disabling. The perceptual illnesses that interest me change their names with every generation, with current disorders being called fibromyalgia, chronic fatigue syndrome, and Lyme disease.”

    2. Mary Barker says:

      I’m afraid Dr. Walitt seems to want to have it both ways in regard to chemobrain – that it’s physiological in basis but also a “somatoform experience” – which doesn’t make any sense at all. He says:

      “We hypothesize that acute shifts in cytokines related to chemotherapy administration lead to epigenetic alterations. These epigenetic changes persist after the resolution of the chemotherapy-induced immunologic changes and are primarily responsible for creating and maintaining changes in neuroplasticity that underlie the somatoform experience of chemobrain.”

      So chemotherapy causes acute shifts in cytokines leading to chemobrain, which is a somatoform “experience” – and the definition of somatoform is below, from WebMD.

      “Somatoform disorders are mental illnesses that cause bodily symptoms, including pain. The symptoms can’t be traced back to any physical cause. And they are not the result of substance abuse or another mental illness.”

      He makes no sense at all. He can’t have it both ways. Something is either somatoform or biologically based. And his proposal to administer a “major physiologic stressor” in order to figure out the biology behind chemobrain (so it’s not somatoform after all?) is just downright scary.

      I think his patronizing, condescending and ill-informed ideas re fibromyalgia combined with his extremely muddy reasoning outlined above (I hate to call it reasoning because it makes no sense) renders him unfit to be lead investigator on this project.

  76. Wendy Boutilier says:

    After reading all these comments I’m not sure I can add anything that hasn’t already been said. I have a problem with the way Dr Walit perceives Fibromyalgia as being a curable psychosomatic area. But, I question the integrity of the commission for choosing someone who really doesn’t understand Fibromyalgia. How much of this choice is in the interests of the patients and how much is in the interests of Insurance Companies & Big Pharma? Im sure everyone who has been crippled with Fibromyalgia knows that they have just been thrown under the bus.

  77. Susanna says:

    The paper is quoted as saying: “…discordance between the severity of subjective experience and that of objective impairment.”
    Has he stopped to think that the ‘objective impairment’ is not adequately measured? Saying this shows the height of medical arrogance.
    Has he shown how treating fibromyalgia as psychosomatic has cured or improved the patient?
    He should be sacked from the study.

  78. Anja Olergård says:

    My car broke down, so I took it to the mechanic. He, in turn, took the car to his good friend at a bike repair shop. The bike repair man saw that the car had wheels, just like a bike, and happily exclaimed The car must have a flat tire, that is often the problem with bikes.

    Dear NIH, I am a Swedish ME patient. This appointment is sad, misfortunate, disgraceful, a complete let-down. A person who has these biased and uninformed views cannot be heading such important work. The IOM clearly stated that ME is a serious, physical disease. It is hard for me to think that it is not a prank to appoint this man. He is a bicycle repair man. I want my car fixed by a professional.

  79. Anonymous says:

    It seems to me that instead of taking on the “work” required (I assume it’s too hard for them) to ever find a cure and more causes — there are different antibodies, cytokines and biomarkers in normal, healthy controls than in those with M.E. and fibromyalgia — for M.E. and fibromyalgia, the N.I.H. has decided to abandon us all, yet again.

    Years ago, I suggested our government just give us each a choice of whether we want to die and then provide those of us who do a way to do it quickly and efficiently. It seems they are doing it slowly by hiring these morons and I’m done with this.

    I have no life and I’m sick and tired of waiting for my f***ing government to give a s***. It’s been 15 years with no end in sight and no progress. I’m done.

  80. Debbie says:

    This is so disheartening. The NIH giveth and the NIH taketh away.

  81. Annette Pittari says:

    This is an incredibly telling appointment by the NIH. We are on our own again. The NIH is useless to CFS/ME sufferers.

  82. Rivka says:

    It is inappropriate — and hurtful to ME patients, who have suffered enough — for a person with this man’s views to conduct NIH research into ME. — Rivka

  83. Ann says:

    This man’s appointment to the NIH for ME/CFS research is an outrage. Has he listened to Dr. Komaroff, Dr. Unger, and the other experts who spoke at the CDC Grand Rounds on ME/CFS? Those of us who support the patients require that the government take action and use the knowledge of ME/CFS experts to make progress in identifying and treating this devastating illness.

  84. The social construct, or “narrative,” of disease was a popular post-modern concept when I was studying for my doctorate in 1990. It was nonsense then, and it is nonsense now. It is clear that Dr. Walitt is very much behind the times in both his theories, which are very dated, and in his general understanding of complex multi-system diseases. Given Dr. Walitt’s evident lack of familiarity with ME/CFS, and his poor grasp of biomedical science, he should be immediately replaced. A man who believes that disabling diseases are “just a range of normal”, and that “you’re not sick”, or that “you’re just dealing with the difficulties of just being a human” is clearly not qualified for a project meant to uncover the biological underpinnings of a disease that has devastated the lives of millions of people.

    1. Flo H. says:

      Great statement, Erica!

  85. Eilidh says:

    I think there is a need to look at this proposed trial and appointment of Walitt and Gill very carefully because this is so important for the future of people with ME and the future of any meaningful ME/CFS research.

    What do we see; a trial that suddenly appears from nowhere that is isolated from and hugely at odds in its concept and design with the biomedical research being proposed and undergone at the present time. The first look sends your brain reeling but if you hunt very, very, carefully a few crumbs of comfort can be found. Do we go with our instincts ‘that if it looks like a rat and smells like a rat it is a rat‘. Or do we try to be optimistic and work very hard to justify what we see.

    To my mind this is a very familiar tale that has been repeated ad infinitum in the UK for more than two decades. Just as hopes are riding high in comes the hammer blow from psychiatry/psychology, after the promise of huge funding from NIH fails to materialise the direction of the research takes a sudden left turn into psychology and psychiatry, and this may just be the tip of the iceberg. Possibly a rehash of the whole Straus and Reeves scenario ready and waiting in the wings to spring into life again and turn back the clock for another decade or two.

    The evidence against him is that Walitt has proclaimed on many previous occasions that ME/CFS and FM are psychosomatic, and instead of speaking out clearly and concisely about his opinions he has smothered every utterance in unintelligible psychobabble. If there is nothing to hide why not say it as it is, surely that’s not beyond him to do. In every instance when we have come across this in the UK it has been used for nefarious purposes to subvert ME/CFS down the psychological/ psychiatric route. It can be used to dupe patients, researchers and GPs and send out a negative message that informs public opinion and confirms notions that ME/CFS is a psychological problem and not a medical one.

    I would look very carefully to see if Simon Wessely has any involvement in this proposed trial and if he has, it will not bode well for ME/CFS patients. This whole scenario bears all the hallmarks of his endeavours and as James Coyne found he is very active behind the scenes although he claims not to be.

    Even if these types of researchers have the best intentions, and in the UK we know they have not, as they have demonstrated by refusing to release the data from the scandalous PACE trial, the results of their research has always been damaging to the ME community. Whatever meager results they have gleaned from the research has always been blown out of all proportion and constantly been used to reinforced the perception that ME/CFS is psychological, a behavioral disorder, and not a genuine disease or illness.

    We must ask ourselves Is this a risk we can afford to take?

  86. Sissy says:

    I’m so weary of this crazy roller coaster. Another “stall” by the NIH, with Wallitt as the facilitator this time. We are not even allowed to have hope. Not with Wallitt, not with the NIH. It’s so sad. Utterly heartbreaking. Please remove Wallitt. Can we not even be heard? Clearly, we, the subjects of his theories, his “research”, do not want Wallitt.

  87. jess says:

    NO !!! Please get rid of this dangerous man. I think he means well but will hurt us far more than help us. Because Fibromyalgia is not understood ,does not mean it is not a physical illness. All illness has a psychologic factor, but i do not understand why some of the strongest people to pain and adversity, to ignorance and hate,are always targets as being some part of a convoluted sham.(as if we are “pretending and could just hop on a unicorn wave a fairy wand and presto we are all better” please ger rid of this man, he does not even seem current on research. I would like to ask him how the hell we are supposed to live a life like this and fit into “normal”society. He doesn’t have this illness , he does not get it….he hasn’t lived with it or in its confines, that feel like a prison of sorts….if he lived with it for one month he’d be crying like a baby. reconsider this one!
    I’m all for buddhis philosophy , spiritualism etc…they can all have there role but we deserve real science and real medicine just like ever other disease /chronic illness.

    1. Carol Carlson says:

      Well said, Jessica.  Thanks.

  88. justin says:

    Hi MEACTION,

    Dr. Wallit and Francis Collins have some pretty different views with regard to how truly debilitating this diseases is. Francis has noted this in interviews and addressed it. Can the question be asked to Francis Collins as to why he would have Wallet (Francis Collins Employee) the lead clinical investigator, with a biased that we can think and walk our ways out of this disease and still have him be in charge, when he openly stated it is biological illness (which matches the IOM and P2P Reports)? This should also be asked of Arvinder Nath? Nath chose Wallit correct?

    Can you please discuss with the NIH what Dr Wallits lab or area of focus is? he is the lead clinical investigator. But from where?

    We need an answer as to what his “lab” studies? What faculty of medicine is it in? Why he was chosen if he is not part of either the immune or neurological institutes.

    This is very, very, very serious. ME/CFS is one of the largest medical cover ups in modern day society.

    We need to stand united and face this head on to remove biased individuals. Can this issue not be brought up in the Press, Social Media, Rally, etc.? Can we not put out articles to large News Papers to write about this? Do we as sick people not need a louder voice at this point?

    Has any one of the Top ME Drs in the US and around the world been contacted to write a letter to the NIH? Or at least consult with them and their thoughts on Wallits appointment as lead investigator?

    Have we contacted Senators to discuss this do we even have a Senator Actively taking a stance for us?

    With the IOM Announcement to suggest the stop of Funding to GWI, it is of utmost that we not lose again to the insurance companies who have deemed this as a memtal illness for decades so to ensure we not recieve disability.

    I know moderator you have to view this. Even if you dont post it please reply to my email. I would like to help if I can.

    Regards,

    Justin

  89. Emily says:

    By involving Dr. Walitt, the NIH has shown a deplorable lack of understanding with regard to ME/CFS. Specially, a failure to understand the severity and seriousness of the illnesses that causes 25% of afflicted to be disabled to the extent that they are bed or wheelchair bound. Also, a lack of awareness regarding published research and physiological abnormalities already in evidence.

    This is NOT a narrative. This is a devastating disease with evident physiological abnormalities. It has been largely ignored and hundreds of thousands to millions of Americans have suffered decades without treatment because medicine has embraced the model Dr. Walitt espouses.

    Continuing to employ psychosomatic models and those who insist upon them in the research of this disease betrays the NIH’s lack of commitment to Director Collins’ statement of intent to begin researching this disease effectively. It is impossible to have unbiased and/or useful research in such a climate of clearly biased psychosomatic assumption. Dr. Walitt’s insistence on inaction with regard to treatment of Fibromyagia and ME/CFS will perpetuate the paucity of biological research, resulting in continuing the neglect and abuse that we were all hoping Dr. Collins’s announcement would end.

    It is essential that the NIH remove Dr. Walitt from this effort and reconsider criteria for staffing.

    1. Emily says:

      CORRECTION *Specifically, a failure to understand the severity and seriousness of this illness that causes 25% of afflicted to be disabled to the extent that they are bed or wheelchair bound.

  90. Tim Marshall says:

    This will result in one thing (if he remains) the NIH will be held back from doing meaningful research and their budget will turn to dust with overseas treatments making a mockery of the US

  91. JW, Esq. says:

    Brian Wallitt is an embarrassment to the medical profession. Think about what that means in terms of how our government operates. Then think about how those who purport to care about humanity – about human rights – spend money and conduct business. The legal implications – the conflict of interest aspects – of the garbage that comes out of this collaborator’s mouth are too numerous to list. I would love to hear what Ron Davis, David Bell, Byron Hyde, Daniel Peterson, Leonard Jason, E.G. Dowsett, et. el., would say about this dangerous traitor if they could…

  92. CA Fazon says:

    Wallitt must work for a contracting corporation that won a bid or lobbied its way into getting a contract. This guy is insulting, unprofessional, and a not up-to-speed. Stanford and clinics in Europe are the places to look.

  93. Functional Family Therapy was founded within the 1970s by Dr.
    James F. Alexander.

  94. barbara says:

    This doctor is unbelievably patronising; he talks as though patients just need their hands held and a few words of comfort and a rallying cry to ‘buck up’ will do the job of curing severely ill people.
    If you substituted heart disease or diabetes in his long-winded spiel, you would be struck off the medical register.
    Why cannot he acknowledge that what is needed is research and more research, money and more money?
    Assuming that everyone who suffers from Fibromyalgia, ME, CFS, has some sort of mental illness is not only stupid but also statistically highly improbable.
    His facial expressions, as many have pointed out, tell the tale of someone out of his depth bluffing his way uncomfortable through an interview. He would clearly rather be somewhere else!

  95. Matia says:

    I have suffered with cfs/fybro for 12 years.
    This man has absolutely no clue what he is talking about!!! How dare he!!!
    I was told I was depressed for many years. I became my own advocate. It was not depression.
    Stop smoking, excercise, you will feel better…
    Are you kidding me!!!!
    If I did not have modafinil, I would not be able to get out of bed. And every year I have to go through a terrifying experience of whether or not my health insurance will cover it, because I do not have narcolepsy, work shift disorder, or sleep apnea. (Although my sleep studies have shown low rem and several awakenings.)
    Need desperate help from the FDA on that issue!!!
    The CDC and NIH need to put as much information out there to help our medical field, as well as those of us who suffer, better understand this debilitating disease.

  96. Lee says:

    Did you know that in the medical field, ME/CFS patients who are checked into hospital (for unrelated health issues) are consistently known to be very difficult patients, personality-wise?

    There are other diseases where medical professionals have noted certain personality types correspond with certain diseases. This is not implying that ME/CFS is not a physical disease, but that the psychological aspect should not be angrily dismissed by patients assuming they’re symptoms are being passed off as purely psychosomatic.

    Do my statements bring you anger and a need to justify your illness to me?

    I understand it more than you realize.

    1. Jaime S says:

      Your statement makes me feel resigned, Lee. The chronically ill have heard it all before — all of the chronically ill.

      A short while ago, there was something known as ‘cancer personality’. People with cancer were seen as repressed, holding back their emotions, and this is what caused them to grow tumors. (Don’t you know, if you hold things back, it causes your cells to proliferate into a vascularized mass. Of emotion.) I wish I were joking: this was the 1970s when this was a popular idea. Yes, among doctors and researchers. It’s best described in Sontag’s book ‘Illness as Metaphor’. Patients are still told in cancer that with a strong enough will, they’ll recover, though studies have found no connection between personality and cancer survival. This is telling the patient that with the proper attitude, they won’t die. Remarkable.

      A short while before that, people had autism because their mothers didn’t love them enough, causing them to not develop the ‘right’ personality.

      A short while before that, people with MS were known to be suffering from ‘hysterical paralysis’ and many conclusions were drawn about their personality types. They really, really wanted attention, that was all.

      A short while before that, people with Parkinson’s just couldn’t keep their hands off themselves. If they could only get some therapy to help dispel their sexual deviance, they would be cured.

      When you say that this isn’t the first illness that has been related to personality, you are more correct than you realize. Your conclusion that ME must, then, be related to personality is the erroneous one. When an illness is poorly-understood, we invent myths to explain.

      Suppose we assume that you’re right, and some illnesses with lots of physical signs and symptoms are directly related to the personality of the sufferer anyway. Even so, that case doesn’t hold water because of the number of directly contradictory findings in the personalities of ME patients. Patients with ME have alternately been described as hysterical and over-emotional; laconic and emotionally-suppressive; or manipulative with a tinge of narcissism. I won’t slight the CDC — their conclusion is that there is no difference between emotional coping skills in ME patients and controls. Therefore, if personality were important to diagnosis or treatment, I wouldn’t know where to start as the clinician. Should I address a hysterical personality, a suppressive personality, or should I treat the patient as a manipulative narcissist? Should I ask about childhood abuse? Or am I facing an emotionally-healthy person? Perhaps I should just treat the patient as an individual. Otherwise, I’d have better luck playing the stock market or betting on the weather.

      Finally, stating that patients are ‘difficult’ isn’t a personality type, it’s a single trait. I’m sure we are! Difficult to diagnose, but difficult to turn away, which makes the clinician have difficulty. In an illness this debilitating and this poorly understood, you don’t make it this far unless you’re a fighter. Multiple studies estimate that approximately 80% of patients who have this illness as revealed by survey questions don’t actually have a diagnosis. It’s the 20% most stubborn who do.

      You can’t draw conclusions about an entire population based off of such a blatantly self-selected sample.

      Finally, I don’t think that there are many patients who would say that there is no such thing as the mind-body connection. Instead, we would say that there are physical signs so outrageous that the mind cannot manufacture them at will. We would also add that studies (and individuals) who discuss the ‘mind-body’ connection seem more interested and invested in the theoretical functions of the mind over the actual signs and symptoms (and suffering) of the body. BPS research can come across as dark-ages wand-waving to those who have a science background who read the studies performed under its umbrella; and, at least in the UK, BPS research comes across as coldly self-serving attempts to reduce the cost of therapy, since the government foots the bill. At least for my part, it’s not the idea we disagree with at its heart. It’s the public face of the people who believe in it, and what it is used for that is so abhorrent to patients.

      Last but not least, when you ask if your ideas bring people anger, and the need to justify the illness, this is a classic riposte to ward off disagreement. “And if you disagree with me, it shows you are wrong.” For goodness’s sake. If I disagree with you, it shows that I disagree.

      1. Caroline Fribance says:

        #MEAction | Jaime S replied to Lee on NIH lead clinical investigator thinks CFS and fibro are somatoformWell said, Jaime S. You hit all the issues so well.

        1. Jaime S says:

          Thanks, Caroline. 🙂

  97. jessica perry says:

    DR.Walitt is the best… if not he never gave up on me n knew there was something… he learned alternatives to try in me… I have SAPHO… I was in Washington hospital due to flare up… n he had an MRI done… 30 mins later they came to take me for 2nd MRI… he finally saw it… he was so happy that day… I’ve known him/seen him since 2002/03… I spent a long time on meds n trying meds… as I’m 1 in 20k ppl in world n also the top 1% worst… however going to an ER is like speaking another Lang. the only time it really puts me over is when I get sick…… if u can see dr.walitt I owe him my life…. THANX DOC…

  98. Melissa says:

    Fibromyalgia, CFS, and ME are very real diseases. This article is full of nonsense.

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