Progress In ME/CFS Patient Advocacy: Overcoming The Militant Meme & Why We Must Keep Evolving

Progress In ME/CFS Patient Advocacy:- Overcoming The Militant Meme & Why We Must Keep Evolving

It is an exciting time for ME/CFS advocacy, we have new voices in the community (including a growing number of experts) and new tools at our disposal to get our voices heard. I’m particularly excited about as it offers a unique platform that provides professional advocacy while also empowering patients by giving them tools to represent themselves. In this piece I want to explore why getting recognition and support for ME/CFS is such a unique and difficult challenge, the importance of evolving the advocacy narrative and take a look at how recent successes have come about.
We, ME/CFS patients know instinctively how ill we are. We push against this disease on a daily basis and the disease pushes back twice as hard. We know that you simply cannot exercise post-exertional malaise out of existence and declare yourself recovered. Were any of those who malign or disbelieve us to spend a week in our bodies, experiencing the fullness of our symptoms, then they would find their opinions quickly converted. But without such fantastical mechanisms at our disposal, translating this experience to a wider audience can be exceedingly difficult.
We are extremely ill, often disbelieved by family and friends, stripped of support, routinely defamed by those who seek to take ownership of our disease for their own agendas and yet, despite that extreme injustice and lack of capacity, it falls on us to campaign from our beds for recognition and research funding. Professor James Coyne recently took some flak on twitter for comparing our struggle to the civil rights movement, but we do actually share a lot of the same problems. In fact we have a unique disadvantage by comparison – we cannot march and we’re lucky if we can get about 1/10th of what a healthy human can get done in a day and often that 1/10th is spent on basic tasks like hygiene and feeding ourselves (some aren’t even so lucky). Some patients grow up in households where their disease experience is denied via inept psychopathology and they are subjected to all kinds of bogus treatments at the request and even enforcement of family members. Some patients like Karina Hansen are even in imprisoned in medical institutions.
Oxford CFS whether intentionally or by accident, is the perfect schematic for oppressing patients with a disease for which medical science does not possess all the answers. It allows for an initial, measurable physical illness to become the event that precipitates a fear of exertion. Every statement from a patient that follows this diagnosis can then be seen as an irrational protective action. In contrast to AIDS, ME/CFS despite a number of outbreaks over the years, is not feared as an infectious disease and it is not feared as a fatal disease. Worse still, if sources that are seen as orthodox are prepared to describe a disease as a challenge the patient needs to overcome, this can be a comfortable belief for a healthy individual.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]The ME/CFS community cannot mirror the actions of ACT UP.
ACT UP itself would have to become something very different this deep into the information age [/pullquote] It is important to note that due to its unique challenges, the ME/CFS community cannot mirror the actions of ACT UP. In fact, I’d argue ACT UP itself would have to become something very different this deep into the information age – where soft power has been refined by the elite to a level at which it can easily de-fang large scale protest. The power that holds sway over how ME/CFS is dealt with is focused in Politics, Media & Academia. Traditionally ME/CFS patients would look towards progressive media outlets to champion their cause – however the Science Media Centre has co-opted the progressive media by painting MECFS patients and advocates as mental health denialists – which in truth has been pretty easy for them to do. Since a lack of mental health funding and recognition is such a huge problem and speaks strongly to the progressive psyche, the deeper issues in MECFS have been locked out of the mainstream media.
It does not take long on the internet to find patients (regrettably, including myself ) making statements like “I’m not crazy”, “Psychobabble”, “x doctor is a quack”, “it’s not all in my head”. These statements are so easily bent into a narrative of mental health denial. Of course the truth is, you can actually be politically incorrect and oppressed at the same time. But it is the intelligentsia that fill parliament seats, wield power in academia and preside as taste-makers over a reading and listening public. Those that hold such positions will be subject on a daily basis to angry letters from people who disagree with them and so a well crafted narrative about unruly detractors becomes an even more appealing read as it offers indirect sympathy for what they perceive as injustice.
The result of this narrative is that patient forums and social media groups can become as much a curse as they are a blessing. I do not begrudge the right to some hearty political in-correctness when letting off some steam. How could this disease not make people angry from time to time? The disease itself does not imbue us with media training and a perfect grasp of PR. But the truth is, while forums and social media have allowed us to exist outside of our darkened rooms, they have also provided our oppressors with an unending backlog of press-ready quotable quotes.
When I was a younger patient experiencing that anger, lack of belief and utter despair, the chorus of anger proved a little too appealing and blinded me to both objectivity and subtlety. Polar narratives of heroes and villains, of absolute support and suspicious rejection are simple and gratifying. There are doubtless perpetual agitators in the ME/CFS world, but they exist in a system that takes your anger and uses it as a sword against you. Whatever injustices may have been committed against us as patients, nothing is more important than searching for the causes and cures for ME/CFS. Anger must be secondary to positive and effective action. Never underestimate the power of your lone voice and the effect it can have on the strength of our cause. Persistent, thoughtful and considered voices of several advocates over the course of a few years, rescued me from the blindness of my own anger. I cannot overstate how extremely important for those considered voices to boom out and echo as they really do make a difference.
The recent support of Professor James Coyne in tackling the glaring problems in ME/CFS research by challenging the establishment from within, cites in particular two patient advocates – Tom Kindlon (Citizen Scientist) and Julie Rehmeyer (Journalist) for his involvement. Tom has taken it upon himself to follow the literature on ME/CFS as closely as his illness allows him and his responses which expose the problems and inconsistencies in ME/CFS research are frequently published in major journals. Julie Rehmeyer is an award winning, well published journalist who has mastered the art of writing respectful, fair and accessible articles that challenge and summarise issues surrounding MECFS. (Rather absurdly, after I finished planning this piece, Rehmeyer finds herself under fire for talking to Brian Walitt at the NIH, who is known for his highly questionable views on ME/CFS. I should point out, it is when a journalist refuses to observe both sides of the line that their credibility is damaged).
The collective narrative must evolve. Just like graded exercise and CBT, the efficacy of unfettered anger and suspicion does not have a credible evidence base. As an example, the disease definitions used to recruit patients for ME/CFS research have become dangerously over-politicised. The use of the Fukuda or even Reeves criteria is not an act of disability denial. It is not the wideness of the criteria that matters but rather what data is logged and how it is used. A wide criteria could actually help in research to create control groups based on different signs and symptoms. Linda Vansteenwinckel rightly pointed out to me that some signs of the cause of ME/CFS may only be observed during certain phases of the illness. There are already studies that have shown different findings based on illness longevity.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Anger is justified but, anger can be used against you[/pullquote] If we take Myalgic Encephalomyelitis at its basic meaning – brain and spinal cord inflammation, then it’s not difficult to imagine different causes, symptoms and severities. Being over specific in the short term could compromise the quality of research. If ME/CFS is a post-viral response, can it be caused by more than one type of virus? What effect does this have on symptoms and severity? If ME can also caused by toxins or intestinal problems, again the experience could vary. Could in some cases, PEM be sporadic rather than perpetually sustained? Is this a reason why some people recover and others do not? Science is not about disability denial – even if it has been used to that end at times. It is important that research is of good quality and documents the real, painful and tragic symptoms suffered by ME/CFS patients. This is ultimately far more important than over-politicising diagnostic criteria. Even a paper that uses the weakest Oxford criteria could prove useful if the right data is collected.
Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change. If it is to be used for good, then it must be used carefully and all of us in the community have a responsibility to promote that message. I know that years of neglect and oppression have led to mistrust and I know that in the future we as a community will be subject to actions that are worthy of that mistrust. But the injustices against us do not grant us any sort of immunity in the public eye. When all is said and done, history will note, “No wonder these people were so angry”. Right now, to a lot of the people who hold power over our lives, we’re just angry people.

Editor’s note: What do you think? What are the benefits and the dangers of anger? How can we best use our anger and where do rightful outrage and strategy meet?


19 thoughts on “Progress In ME/CFS Patient Advocacy: Overcoming The Militant Meme & Why We Must Keep Evolving”

  1. The controversy is particularly anguishing for me, as I fear frustration, bitterness, and hostility may chase off the help we both need and deserve. As one of the few patients that had access to a great doctor that held an early interest in ME/CFS I had the benefit of a kind of intensive care and disease education that most patients are not able to access today. Six or seven long years from initial onset had passed before I found Dr. H through articles he had written with other investigators, now well known in this area of research; and he was accessible working within 20 miles of my home.
    After collecting 40 vials of blood, smears, clippings of nail and hair and an expenditure of many thousands of dollars for tests not covered by insurance we were able to find that my blood work showed a distinctive signature although mosts tests remained within normal limits. Titer counts showing past or current viral exposure were off the charts, but DNA probes did not prove their presence. We found the normally non-pathogenic parasites that my body could not expel on its own. We also found allergies and sensitivities to most of the food I ate on a regular basis. We developed a plan. We would treat the things we could like the layers of an onion with the goal of getting to the heart of the problem, one layer pealed away at a time. The road was not always good, it fact, I become more more debilitated before there were any signs of improvement. Every medication we tried had to be discontinued due to the side effects. But eventually a new crooked path towards getting stronger emerged. Progress forward was always followed by a backward slide…. but the steps forward were bigger than most of the slides. The mantra was save ½ of the available energy for healing.
    It was my extreme mis-fortune, that my doctor had a long term personal relationship with a married patient. A relationship that produced 3 of her 4 children. He was known to smoke Cannabis on occasion, and used a mantra when teaching patients how to meditate that including getting in touch with ones inner god during meditation. I, like many other ME/CFS patients had difficulty processing and remembering instructions; so, he taped our office. By taking home the recording, I re-play the session until the conversation was understood. There were, to be expected I suppose, a few patient complaints. His fees were high, and in 1993 he was ahead of the curve in refusing to accept insurance or medicare, Even worse, there were tapes of him breathing deeply, counting and saying I am god. I expect these were made to show someone how to medicate and claim their own inner god. Eventually patient advocates (most of whom were out of state and had no personal experience with this doctor) made it impossible for him to continue to practice in our area. The “I am God” tapes were playing on the radio with allegations we was a cult leader, and the state board threatened to strip him of his license for the improper relationship with the mother of his children; both she and her husband were patients. At the time my doctor’s practice closed I had just turned the corner and was beginning to emerge from the abyss. I was on my way to better function but was all the sudden alone, as are so many other other ME/CFS patients without access to knowledgeable medical care. When the Police showed up at my front door asking if I knew why my file was not with the other records, I said yes it was given to me, he though I might need it. I had 100 percent of my records along with a written protocol to help the next practitioner. However, doctor after doctor, who examined my file said brilliant, but no they did not have time for me in their practice. Was my doctor perfect, NO. Was he funding his practice and experiments through the bank accounts of his patients, Yes. Did I learn how to care for myself, and begin to live a fuller life, YES. What I say to patient advocates: we may not have perfect at the start, we do indeed deserve better, faster, more fuller understanding, but dam it, we have a starting place here… please do not mess it up.
    Advocates have a very special and needed place in this conversation. They work hard, bring attention to the problems, and are most often sick themselves. They are important and in some cases beloved. But not all advocate groups, in my experience, have present balanced views. Often the posts are sensationalized with spin. When patient advocates stir furry and frustration to form a tidal wave not all things that happen are good. I sincerely hope people read as best as they are able, look at some of the primary sources and do not rely exclusively on “Advocates” for their information and opinions.

  2. Yes… I have been having regular chats with myself about just this. I am so full of anger and disbelief – and that feeling is continually ignited as there are new assaults against my character almost daily by the skeptics in my life. I know that I need to channel this anger into quiet determination as the immediate effects on my body are undeniable. I must instead cling to the hope that within my lifetime, we will all be vindicated and acknowledged for the moral fortitude that got us through it…

  3. Scientific efficacy is the crux of PWME objections to mental illness attributions and to incorrect definitions, including “broad” ones.
    The point that needs to be gotten across — so that it can be heard over the Science Media Center’s noisy agitprop — is that one cannot design good research for ME that will reveal its true characteristics in the human body, and thereby enable development of effective treatment, if one is mischaracterizing the disease as some variety of mental illness or including in one’s research cohorts persons with mental illnesses such as drug resistant depression or a wide range of misdiagnosed physical diseases.
    Without careful and accurate observation there can be no scientific discovery.
    It is venal and slanderous of SMC to cast our objections to inaccurate criteria and heterogenous cohorts as prejudice against mentally ill persons.
    We are simply prejudiced against bad science.
    Matt, I appreciate your willingness to explore a wide range of possibilities. However, you need to know more history and science to appreciate the dangers of broadening criteria in respect of ME. Holmes, Fukuda and Reeves were all constructed with deliberate distortion of the facts observed. In Holmes and Fukuda an NIH scientist persuaded more junior persons to delete severe neurological symptoms from the observations on which diagnostic criteria were based. This has been documented through interviews with the principals by the excellent investigative journalist Hillary Johnson and by release of US Federal documents under FOIA. In Oxford and Reeves physical symptoms from well-characterized cohorts were eliminated to leave room for the authors (on both sides of the Atlantic) to advance via research publications in careers in psychology and psychiatry.
    Blaming advocate anger for lack of progress in ME is a well-established tactic designed by perennial “victim” Simon “poor me” Wessely and the Science Media Center. It has been picked up and used also by NIH. Inevitably it cloaks the professional or financial advantage to be gained by discrediting PWME and the legitimacy of their objections to the corrupt and damaging status quo.

    1. Obviously a criteria like Fukuda isn’t going to offer a strict diagnosis this much is clear. I prefer to think of it terms of the fact that it does not exclude a person with ‘ME’.
      If when you conduct research you log the symptoms of each patient individually, it renders the specificity of the criteria used less important.
      I would like to see data that compares patients who have POTS, Dysautomnia, Illness length, Onset Type – this would prevent the possibility of polluting research with the inefficiencies of patient selection criteria. Any patients with severe ME symptoms would always be seen as a subgroup in the data. Until we have a clear method of diagnosis, the criteria themselves will always be open to scrutiny. If there are multiple causes of ME it might even be unfair to be over-specific.
      Ultimately the philosophy behind the research is most important. Is it based on a genuine desire to discover, or is it based on an agenda? I do not believe a criteria can force an agenda on good Science. In fact using wider criteria in this way may ultimately expose any issues they have.

  4. I understand how personal constant anger no no good for any human being, and I understand that the people who are the target of anger can try to use that anger against their accusers . But I don’t think either of these things outweighs the power of targeted rightious anger articulated well by many as a wake up call to those who are ignorant of the facts if the situation calls for it. The anger over the lead investigator was swift and organic and understandable. It started a conversation because it was authentic and based on decades of abuse by these agencies.
    I see a danger in placing being liked and being positive above all else. You don’t have to go so far back as ACT UP to see many movements born of anger at the status quo as the start of real change, Even in this new social media age. Of course there will be those who call these people “uppity” “radical” whatever…it’s always the case even when it’s not true they make it up. The more important bit I think is to stick together and not start finger pointing at each other for not being nice and positive enough. When somebody is helpful to us we are extremely gracious and thankful on a whole I believe.
    I was the opposite of you, I was a teenager when I got sick and I made it a point to stay happy and hopeful, I still do. But after decades of watching the powers that be walk all over us , break promises, ignore, delay, abuse,,,when I see it start again, like it is now, I hope our leaders do have some anger in their bellies even when trying to be diplomatic and not pointed at their fellow sufferers for reacting in an understandable way ( excluding extreme cases like the ones you pointed out)
    I think we are in a pivitol moment in time for us which has caused everyone to be on edge. This study that will affect us in profound ways on a global scale is moving fast without our input in a scary direction. Do we have time to change its course? It does not look that way but right now I hope we can be united in our effort to try.
    As far as the media goes nothing will change the narrative more that this study and how the investigators interpret the results and the people chosen for the control groups. Lets work together on getting that as good as we can because whatever they end up with will be splashed around to media like never before, especially if it is bad news for us. At least that’s how it’s gone in the past.
    I see you points and agree on many but right now seems like a tough time to swallow the play nice card.
    Can we agree to play hard and fair until this is settled?

    1. Hard and fair is a tricky line to walk on. I completely understand why a patient would question the involvement of Brian Walitt. He definitely deserves scrutiny and any proposals coming from him should be studied carefully and critiqued where necessary.
      Problems begin to arise when patients move too quickly. I mean, they might ultimately be proven right – but, a rush to judgement is easy to counter. If early critiques of Walitt lack substance or contain mis-targetted or false accusations – it gives him an easy riposte and a position of strength. It lends power to stereotypes associated with community by the SMC (and others) and it allows a safe retreat from the discussion table with much less pressure to go back.
      There has to be scrutiny and I have to say, as I read the comments under MECFS articles I have noticed the quality and substance has increased so much over recent years. Information seems to be spreading throughout the community and that is very encouraging to me. The danger is, if those comments are ignored out of hand or attention is drawn from them by those who cannot see beyond sating their anger, it will ultimately lead to a schism in the community.
      We really need everyone though, a schism wont do. But I do think the time has come for a little bit inward gazing and I apply that to myself. We have rightly united over false accusations and ridiculous conflations levied upon the community – but there are things we can do better and there are doubtless mistakes to be fixed.

  5. I’ve been taking a lot of heat from British academics concerning my quest for the PACE data, losing a few friends in the process, but I’m prepared for that.
    But I am also increasingly frustrated with misdirected anger from the community. For instance, the NIH effort is far from perfect, but potentially fixable. But some of the anger reactions and ultimatum are simply embarrassing as well as ineffective. Please people get a handle on it. I’m a strong supporter but I’m getting increasingly alienated by ill-informed shoot from the hip reactions.

    1. Prof. Coyne, can you please indicate where the “ultimatum” and “shooting from the hips” sorts of critiques you mention have been found? Are they widespread or concentrated? Does your comment mean that you consider it bad strategy to criticize a project leader’s published articles for lacking in evidence, data and research?
      Do you advise against complaining to NIH about making B. Walitt a leader of their first and only intra-mural quest for biomedical facts on ME, despite his strong and long-standing commitment to the counter-factual stance that ME is “somatic” ?
      Thank you for your support and interest in the subject of ME.

  6. This article should be required reading for anyone considering taking up the banner of ME/CFS advocacy. Anger can indeed be a motivating emotion but it is rarely received positively by other people who are as likely themselves to respond with anger, or fear, or embarrassment or deprecation – none of which are useful for building lasting working relationships. Vehemently expressed anger is often the mark of the bully, someone who may get their way wherever they exert control but who is hated by others and gets no co-operation outside their circle of fear. Patients should be partners with researchers, and that should be a key ambition of ME/CFS advocacy, but partnership is not going to be achieved by bullying and that is exactly what the approach to the question of leadership of the NIH intramural research has begun to look like.
    The idea that patients can pick and choose who gets to do research based on a kind of anti-beauty contest where contestants are excluded on the basis of their ‘ugly views’ is both absurd and obnoxious. An organisation like NIH will have well established protocols for allocating work; for NIH employees to see a patient group trying to undermine processes that support fair workplace practices and the protection of academic freedoms, will have long term ramifications for how a great many scientists see ME/CFS patients collectively. This aggressive personalised behaviour only serves to confirm the harassment libel promulgated by the PACE researchers, it is an unimaginably dumb way to conduct advocacy and shows a serious disconnect from the world at large.
    Successful advocacy almost always means connecting with individuals or organisations or social groups in ways that sustain mutual respect, it is not like fighting a war , in fact often it is very much the opposite, it is a peace and reconciliation process. To make advocacy about winning risks gaining battles at the final cost of a lasting peace and I really can’t see a future for sound ME/CFS research if advocates make themselves into the Donald Trump of patient representation, the response of most medical researchers and importantly funders will be, if you want a wall you pay for it, you find the people to build it, and by the way we’d like to see it fall on top of you.

  7. I agree wholeheartedly with Matt’s post – especially “ Whatever injustices may have been committed against us as patients, nothing is more important than searching for the causes and cures for ME/CFS. Anger must be secondary to positive and effective action.” Here’s some other reasons as I see it.
    1. Most people are still in the dark about the nature and prevalence of ME/CFS. Therefore, our first priority needs to be education, not venting – however legitimate and correct our feelings are. Further, few people know the history of our mistreatment – if we lead with our anger in our communications, they have no context by which to evaluate our characterization of the past.
    2. We have every right to be incensed. However, the proportion of people who have actually done us harm in the media, medical profession, and government over the last decades are a tiny group compared with the number of people we want and need to influence NOW. So leading with anger does not make sense for outreach to a broader community or to people who were not even around when some of the things that still pain/infuriate us happened.
    3. Our Congressional representatives, in particular, are largely in the dark about our illness. The factual information we can give them about ME/CFS is compelling – why risk turning them off with our anger?
    4. As Matt pointed out, we were too sick to “act up” and gain attention years ago. However, the reality is that nothing happens on the federal level without someone bringing pressure to bear on. The absence of national ME/CFS organizations able to lobby for our needs and educate Congress has been disastrous for our cause, but we can’t lash out at the world for that. Now that the community is coalescing in a new way, let’s present a positive – not alienated – face to the world.
    5. Even the controversy about our name is a distraction. While undoubtedly all patients hate the name CFS, only activists know the nomenclature is an issue. Why spin our wheels about something that does not directly relate to the dire need for more research, treatment, clinical care, and provider education?

  8. Using broad definitions is like taking 40 people who cough for various reasons to do a study of lung cancer.
    Maybe I’m showing my age, but I find it odd that people are concerned about what random unorganized people say on various forums, groups and tweets.
    To get a breakthrough, we either need an organization of significant size speaking with a consistent message to get the government to properly fund and research our disease, or we need to support private research for biomarkers, which will convince scientists of the validity of our disease.
    Or at least this is what has worked in the past for diseases which were in the same position as we’re in now.

    1. Mary Ann, the narrow definition that fit my experience decades ago no longer applies, that does not mean I am well, rather different due to other exposures, treatments, co-morbid illness since developed, or a different stage of this particular illness. Insisting that all frogs have legs excludes the polliwogs. We may have many different stages of this illness that deserve to be looked at if there was a sudden onset, diagnosis of ME, met all established criteria at some point of the course of this illness. Remember people with ME/CFS experience this illness very differently after 5 years.

      1. I’m sure any smart scientist who wished to study long term ME patients could figure out that you fit the cohort.
        What I’m talking about is having people with depression, undiagnosed MS, or other diseases mixed in with ME patients.
        Kind of makes it hard to come up with biomarkers when you’re looking at several diseases, not The Disease.

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