Over twenty US organizations and advocates announce new working group

Help us build a powerful, participatory voice for change in Washington

#MEAction is thrilled to announce that we are coming together with over twenty organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the announcement letter below and find out how you can get involved.
More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis (ME) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight. Stories about severely ill patients like Ron Davis’s son have created more public awareness. And the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.
For the first time, there’s a sense that we have huge opportunities to change the future for ME patients. And just as importantly, there’s a sense that if we want to turn those opportunities into reality, then we need to find new ways to work together across the community to increase the impact of our voices.
To that end, a number of organizations, bloggers and independent advocates, listed below, have started having discussions to identify those areas where they can agree on goals and work together to achieve what is needed for patients.
Thus far, we have identified common goals to focus on, including the need to dramatically increase funding, to advance the research agenda, to resolve the definitional challenges, and to improve clinical care through quality medical education. We expect that this will lead to actions directed toward Congressional leaders, HHS and its agencies, and public awareness through the media.
To achieve these goals, we are going to need broad participation across the community. We will leverage the Groups feature on the MEAction.net platform to get input on these goals and to share proposals for joint actions. Because we are working as a loose collaboration, groups and individuals will be given the opportunity to opt in or opt out of specific actions.
Working in this way and at this scale is new for all of us and we will be learning as we go. We also know that we won’t all agree on every tactic or policy direction. But we believe there is power in numbers and coordination and are all committed to taking advantage of every opportunity that we can to regain our future. 
Please join us and share your ideas and enthusiasm. If you are interested in participating and providing input, you can join in the discussion on these MEAction Groups
[button_color url=”http://meaction.net/us-action-working-groups/” content=”Join a Working Group” target=””]  
Patient Organizations

Connecticut CFIDS Association, Inc.

ImmuneDysfunction.org dba The Vermont CFIDS Association, Inc

Massachusetts CFIDS/ME & FM Association

The Myalgic Encephalomyelitis Action Network (#MEAction)

Open Medicine Foundation (OMF)

New Jersey ME/CFS Association, Inc.

Pandora Org

Phoenix Rising

Simmaron Research

Solve ME/CFS Initiative

Wisconsin ME and CFS Association, Inc.

Patient blogs

Health Rising (Cort Johnson)

OccupyCFS (Jennifer Spotila)

Onward Through the Fog (Erica Verrillo)

Race to Solve ME/CFS (Claudia Goodell)

Speak Up About ME (Denise Lopez-Majano)

Independent Advocates

Lily Chu. MD, MSHS

Mary Dimmock

Sonya Heller Irey

Robert and Courtney Miller

Donna Pearson

Staci R. Stevens, MA

Steve Krafchick, MPH, JD


26 thoughts on “Over twenty US organizations and advocates announce new working group”

  1. We need more funding for research for ME and Fibromyalgia! We need doctors that are trained to treat patients with these conditions. The education for treatment won’t exist until funding for research is existing. Our medications are what keep us alive – without them we would be curled up in a ball even more so than what we already are. The isolation these two diseases create is unbelievable until you have walked in our shoes.

  2. Being diagnosed finally… I only have one friend and no money to contribute. All I can do is sign petitions. This is a devastating disease. Keep up the great work.

  3. My daughter, 28, having lived with CFIDS-OI-chronic pain – and all the other associated co-occurring diagnoses for most of her life, was found on the floor of her apartment by her friends, on January 11, 2015. The coroner’s report stated it was “natural causes,” probably sudden cardiac arrhythmias secondary to chronic dysautonomia. Although Rebecca was not diagnosed until she was 8, I had known since she was an infant that something was terribly wrong: sleep difficulties, pain, apneic intervals, racing heart, digestive disturbances, disorientation, purple hands and feet. During our rounds of doctors in search of answers, we had been told, “It was all in her head,” or “It was all in my head.” I was accused more than once of Munchausens by Proxy, a suspicion that has lived on. Nonetheless, Rebecca was determined that CFIDS would not rule her life. Whenever she could get out of bed or off the couch, she would go to class/school/ hang out with friends/play soccer/cheer her sibs on/rebel and rail against me (Mom) and all the restrictions in her life (diet, meds, doctor’s visit, physical therapy, homework, exhaustion, cognitive fog, pain, a bleeding disorder, etc. Much of what she accomplished was due to the indefatigable efforts of her sibs and friends…They literally carried her to and from the soccer field so she could conserve enough energy to play. I carried her on my back so she could accompany her class on school trips. She became a NICU nurse, although her career was interrupted frequently by going on disability. She was a grad student when she died. She hoped to become a nurse practitioner in genetics to add to patient and family knowledge of health challenges, particularly in CFIDS and its related disorders. When she was 13, she was given the “keys to our town” by the mayor for outstanding scholarship and participation in community affairs, particularly in the area of diversity, and for participation in extra-curricular affairs. She was also named the “most trusted student” in her school community. In high school, she had paintings and drawings exhibited in private art galleries in town. She was given a grant by a local electric company to photograph/video a diverse group of kids, practicing energy conservation. It became the basis for a commercial they later used. In college and at work, she received multiple awards for her participation in patient-centered research and practice.
    Always, her “outside life” was punctuated by her private pain and exhaustion, tearful phone calls asking me to pick her up because she literally could not move, her friend’s panicked cries for help because she had collapsed on the field, calls from colleagues and roommates that she was wracked by pain, that her heartrate was above 200, that she did not have enough energy to speak, that she had lost the ability to swallow….. She had more than one head-on collision in her car due to fogginess and exhaustion….so she bought a bike. It sits in my basement in its box. She tried to strike a partnership with CFIDS and/or waged a war. I’m not sure which side won. She did live every moment of her life to the fullest, but her life was shortened.
    We must find the cause, treatment, and cure so more lives are not abbreviated and are not lived on the battlefield of pain and exhaustion.

    1. Your daughter’s powerful story, her extraordinary achievements and ultimately the tragic foreshortening of her life – still very fresh for you – should be the subject of a documentary. Nancy.
      To memorialize and honor her life, and also to educate and move the uncomprehending public. I hope you will seriously consider such a project, when you feel strong enough?
      Thank you for trusting us with your pain. I hope you will find comfort in your sorrow.

      1. Who would do it?  Where would we get the money to produce it, to distribute it?  We could do a series of vignettes in a documentary about CFIDS.  There are a lot of compelling diseases.  For that matter, we could do vignettes about rare diseases in general and how, for the most part, they are dismissed by the medical profession and the patients/clients who have them are ridiculed and attacked by the health care world, as are their parents.    If a physician does not understand a disorder, feels helpless about making a difference, instead of researching, he punishes the patient and family.  I could tell you hair-raising stories from my experience with not only Rebecca and CFIDS, but my other children, as well, who also have “weird” disorders…mitochondrial disease, for instance, which is uncannily like CFIDS in its symptom presentation and disruption of all bodily systems.     Maybe it would change medical education and medical practice.  The educational system has to change as well.  I have had to fight our local school system repeatedly to address my kids’ learning differences.  They collude with the health care system to label and dismiss legitimate differences.  Once I got the Munchausens Syndrome by Proxy label, the information was “shared” with multiple systems and took on a life of its own.  Once a physician decides CFIDS is a psychiatric disease and not a biological one, it colors the way every current and future provider sees that patient.  They wear different lenses.  It has gotten worse with the EHR.  Your “history” precedes you into the examining room. You are right.  A documentary would/could change the situation, at least open up the discussion.  Just as we need a coalition of CFIDS organizations, there are some things – like health care – that might require a coalition of all people with rare diseases to create a change.   It is my personal sense of urgency…I’ve been jailed, my kids have been locked up in hospitals against my will and against their own, they have had all sorts of labels thrown at them, physicians have physically abused them, propositioned them, they’ve been denied educational services….In the 8th grade, the day before Rebecca was to return to school in September, I received a letter, delivered by a cop, from the NH School System, that she could no longer attend school because she had “no gag reflex and might choke at lunch.”  It took a lot of phone calls and letters from Dr. Rowe to persuade the school to let her attend.   So, tell me more, if you have a plan, or let’s brainstorm together.  

    2. I am so sorry for your loss. Those words seem so inadequate. I am terribly sorry. Sending comfort and support.

      1. How can I be a member or participant in these working groups? I am a long term clinician in this specific field.
        Dr John L Whiting
        Brisbane, Australia

  4. I am in the midst of a seven month appeal (so far) against an unfair dismissal from a psychology MA program. The level of resistance and suspicion in this otherwise enlightened faculty has been staggering to behold! And really – I’ve come to see while managing my outrage – all the insults spring from the global ignorance which is the terrible cross we all have to bear before and after diagnosis with ME/CFIDS/CFS/SEID.
    We need to be seen and heard in an environment of confirmation – medical but also legal. The ADA needs to be reviewed in terms of its failure to serve the special needs surrounding our hidden plague. We need proper representation which must be from without, in the form of troops. Impassioned politicized friends and advocates must carry our message, make noise on our behalf, march the marches we are too sick to march. A more inclusive world is, after all, high on the social justice agenda just now.
    I have come to this conclusion since watching the powerful movie ‘How To Survive A Plague’ recently. Oh the tremendous energy and inspiration fueling those courageous demonstrations of the AIDS sufferers of the eighties and nineties through that long, desperately sad and ultimately triumphant campaign!
    But despite my admiration, I was forced to turn the sound down on the TV…the noise levels triggering pain. And that’s when it occurred to me that we might do well to tap into the rich experience of these activist leaders now purporting to be at a bit of a loss in the post-crisis wake of this work which brought them so much meaning. Well we, as the underserved group-de-jour, hold a good cause which we are too ill to fight for, even as the discrimination and neglect persist.
    Might we not do well to reach out to a group uniquely placed to help?

    1. Marilyn, Just got your first message.  I, as you must know from reading my reply to your other message to me, know only too well the outrage you feel.  I don’t know which MA psychology program so unfairly dismissed you, but we have faced the same experiences.  I have gone through stages of fighting and other times when I opted to leave that battle for the time being, and find a different “home.”  Then, after accomplishing the goal….get the degree/find a doctor – any doctor/expand my network…resumed the fight in a different place, perhaps with an ally, but with a different battle plan.  Sometimes I won.   Is there another program you can get your degree from?  Rebecca was worried that she was going to be dropped from her MSN program.  The thought was devastating to her.  She wasn’t, but she did stop working as many hours, so she would be less symptomatic and wouldn’t keep sending red flags to the faculty at UCSF, thus getting negative attention from her program.  The last time she and I spoke before she died, she asked me, “Ma, what do I do if they kick me out?”    I’d be glad to be a sounding board, if you’d like to consider options: transferring to another school, and/or continuing your now 7 month old battle with the one that dropped you from the program.  Could you go part-time?  Is there an office for students with disabilities?  Can you write to the agency that accredits the program?  

  5. Very glad to hear this! I think it is absolutely crucial to (1) speak with a united voice as much as practicable (for political reasons) and (2) to lobby Congress hard. Looks like this is a great step in those directions. Thank you!

  6. The establishment of living facilities with support for people with CFS also needs to become a robust discussion. The debilitation of this disease makes the routine needs of daily living burdensome if not impossible.

  7. There is a serious lack of trust with many of the organizations involved, and questions about the approach that need clarifying. If the goals lack focus then nothing as usual will be achieved.
    1. How do you resolve using the IOM and P2P reports to legitimize the suffering when these reports are bureaucratically generated misinformation designed to mislead officials, scientists and patients by selectively ignoring the history and decades of evidence because the facts did not fit the political agenda?
    2. What do you mean by “resolve the definitional challenges”? Experts define diseases – not bureaucrats – and the most experienced ME experts have defined ME in the peer-reviewed ME-ICC and accompanying evidence-based ICP. From Fukuda to SEID are bureaucratic definitions. There is only one scientifically validated definition in the ICC – is there actually a problem with that?
    3. You cannot improve patient care by allowing doctors in general practice to diagnose and “treat” ME based on IOM misleading criteria. Doctors do not diagnose MS or other serious neurological diseases using vague symptom checklists, patients are always referred to neurologists.
    3. Is there a goal to advocate for NIH to have ME placed permanently in NINDS (National Institute for Neurological Diseases and Stroke) considering that the WHO has officially accepted ME as a neurological disease since 1969? ME affects twice as many people as MS and this will help legitimize the disease and requests for proportionate research funding.
    Many patients would like to see a more focused and factual approach before trusting this new “working group”, we respectfully request the organizers to clarify these areas of confusion?

    1. Everyone else who commented with questions got a reply, why have mine been ignored?
      I will also restate my first comment as a question:
      How can this possibly work when you are in bed with enemies of the ME community? Too much time, money and energy has been wasted on half-hearted compromises like this.
      I expect to be treated with the same respect other questioners have received. Please answer each question, thank you.

      1. Jack- I am sorry I missed your comment– I was not doing well over the holidays so missed some comments, but saw your new comment. We are also getting attacked by hundreds of spam comments created by bots that I have to delete so I am sometimes missing some real comments. I promise it wasn’t purposeful.
        We are working on a post where we will do our best to answer these sort of questions, but I will try to address some here as well. I also wanted to mention that we didn’t write the announcement, so these answers are my own interpretation and may not represent that of anyone else on the signers’ list.
        1) The IOM report has several big issues. I personally disagree with the creation of SEID, and don’t think the name should be used and think the criteria is not appropriate for research. But IOM overall makes clear that this is a devastating disease that needs much more research. The head of the IOM committee that evaluated the disease, Ellen Clayton, felt strongly enough about how serious the disease is to publicly say that patients should “ACT UP.” It has helped many people in Congress and NIH to understand that the status quo of how the agencies are treating ME was unfair. So I think it is useful to use the good parts of the report to help ensure NIH spends the $250+ million minimum on research that is commensurate with disease burden. I understand that others disagree and respect that viewpoint.
        2. I think there may be valid reasons to use CCC but believe that NIH should use ME-ICC or CCC for all federally-funded research.
        3. There is a lot of work needed to improve patient care and I know many people who are working incredibly hard on trying to improve patient care from every angle (including trying to improve all guidelines, getting ME taught in medical schools, etc.) Although I think we need objective tests that can definitely diagnose ME ASAP, I do want to mention though that some diseases like Parkinson’s are diagnosed completely clinically. I think any doctor with good training could quickly identify an ME patient; there just are very few doctors with training. I do think that patients should be seen by neurologists and that it is absurd that we are supposed to be diagnosed and treated by GPs/Primary care doctors.
        4. It is my goal that we get moved permanently to NINDS.
        In terms of being in “bed with enemies of the ME community”, this working group is open to everyone who wants to be involved. Is there anyone on this initial list that you think aren’t enemies of the ME community? This is an incredibly loose coupling– any individual or organization can decide on which actions they want to support, and it is not a binding coalition in any way. If there is too much disagreement then we can walk away at any time. There is so much work to be done right now and, although I would love it if #MEAction could do all of the work on our own, we don’t yet have the capacity or resources to organize 100+ meetings in Congress, try to fix the myriad of sites that have medical misinformation on it, and push NIH to get patients and researchers involved in all decisions. We need help.

        1. Beth, It will take the support and help of the majority of our patient population to accomplish all that is needed to improve patients QOL. There are questions about the Working Group here, I can say that I have worked personally with almost everyone on the group and they all want what is best for our disease and the patients suffering with it. There may not always be complete agreement on how to accomplish goals, but this group is focused on what we patients are in great need of; Federal Research Dollars and Treatments, real treatments, not CBT/ GET. For those who question this group I would say, join in and help what and when you can. Our goals will not be met without Work or Support from those this group is trying to help. My thanks for all those in the group and those supporting it.

  8. The Bateman Horne Center would like to participate as a working group. We have several board members who are willing to help with this effort.
    Please let me know if you need any additional information.
    Scott Stevens
    Bateman Horne Center Board Chair

  9. What about adding the Thoughts About ME blog to the list? It has many posts that are very relevant to the ME/CFS community and has called government agencies to task for inappropriate behavior.

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