Mary Dimmock: Fight the Power

The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next.

Some have called for us to oppose P2P by boycotting it. I absolutely agree that we must oppose P2P. But where I differ is in the nature and breadth of tactics that we need to use.

What has been done to ME patients for thirty years and is being perpetuated in this P2P evidence review report is scientifically indefensible and irresponsible. Starting with the fact that the entire “CFS” enterprise as a clinical entity has been constructed on the sole basis of medically unexplained chronic fatigue. Seriously? Where is the scientific justification and evidence that all of the conditions encompassed by the common, ill-defined symptom of fatigue plus the current state of our medical knowledge are the same medical condition that should be studied and treated as one? There is none and there never can be.

And yet, for thirty years, that pseudoscience has held ME patients hostage in a living hell.

Such pseudoscience is the bread and butter of those with agendas to keep science from moving forward or to protect their own vested interests. We have seen it with cigarette smoking and acid rain and we are seeing it again with climate change. But you don’t fight climate change deniers by not exposing the flaws, bias and the hidden agendas in their “scientific” claims. You fight them by exposing where their “facts” are wrong, their “science” is unsound and their agendas are driven by self-interest. This is what ME advocates have been doing with the PACE trial and in my opinion is what we need to do with P2P.

Providing formal input to P2P allows us to expose the “science” of “CFS” for the scientific sham that it is. AHRQ (Agency for Healthcare Research and Quality, part of HHS) must respond to our comments, which become part of the public record that we can use later. Providing such input is as valid and necessary as a form of protest as boycotting or writing letters directly to HHS leaders. All forms of opposition are needed.

But given the history of this disease, we should be under no delusions that left to its own devices, HHS will listen to our P2P opposition, whether it takes the form of letters to HHS leaders, boycotting the meeting, or the submission of comments on the evidence review. Each can be dismissed by those who have chosen not to listen.

And much more fundamentally, we need to remember that P2P is just one event in a string of utter failures in HHS’ public policy toward ME that stretches back to Incline Village. You all know the issues – lack of research funding, harmful medical guidelines, abysmal medical care, lack of a strategy, the nightmare of insurance, disability and school accommodations and an agency hell-bent on acting unilaterally and with complete disregard of both disease experts and patients.

Ultimately, the real question is not what specific form our opposition to P2P should take. There is a place for all actions that shine a light on this travesty. Whatever you choose, make sure your voice is heard. Do not let your silence be construed as consent.

The real question is what else are we going to do to protest, not only about P2P but also about every other aspect of HHS’ handling of this disease for the last thirty years.

If ever there was a time for us to revolt as a community, by whatever means available, it is now.

Contact your congressional leaders and ask every one of your family and friends to do the same. Call your local and/or national media. Twitter. Sue the government. Contact the ACLU. Conduct a lie down demonstration. Protest at P2P. Whatever means of opposition that you can think of and are able to do, just do it!


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42 Responses to Mary Dimmock: Fight the Power

  1. Kati D says:

    Well said Mary, Agree with everything. i think the time to publicly protest is now. i’d be willing to go to DC.

  2. cathy l says:

    I totally agree it’s Time to ACT UP 4 ME! Do anything and everything you can!

  3. Matina Nicholson says:

    totally agree! We need to unite in the patient community even though we have differences in how to do it.. You said it well and I hope we can do it bc all of our lives of patients our at stake and being jeopardized! We are all suffering greatly and this is not humane! It was just stated Many Many of times at this year’s international conference which our gov’t officials agreed that humanity plays a pivotal role in the management and prevention of AIDS. In the US, most of the studies out based on Fuduka and not ME. And in the beginning studies focused on psychological basis. We have not had efficient funding to have “good” science/clinical research. That is a major issue. We all know that CBT and GET are not mainstream treatment and GETmis harmful to most. Out gov’t studies have flaws and biase. I wish I had my brain before I was sick bc this insects i did for a living and one many FDA battles to the right to include Pharma data they first rejected and as well as gov’t and competitor studies. As Mary and many others know.. I see slot of “bad/sloppy/biased studies. Look at the objectives, methodically, patient selection, primary and secondary endpoints..and how did they segment the data or did they…Like you and many advocates and patients have stated: what disease our they studying. You may have said it Mary but missed it bc I am down and out. What is the consensus of our experts. Most are afraid to “rock the boat” with the gov’t. But I think it’s time for them to put stand up and tell them they are the experts and they see the patients and these are flaws. Thanks again to mary Jenny and everyone else doing terrific work advocating for our rights to have a chance to get better and have a somewhat normal life. As many of us feel, I am a prisoner of my house and moving more to bed. We need to unite for the sake of children, teens, young adults, and people with no voice..severe ME…as well as adults. As well as patients suffering for years and years. What is better a life sentence or a terminal sentence of a disease? A very sensitive question but due to the fact that I took a journey and watch many kids die and fight with cancer and saw the ones that lived..what is better…NEITHER in MY opinion.

  4. I disagree with you and Jennifer and the CAA and PANDORA.

    Anyone who presents comments to the P2P is joining the government agencies and our phony so-called “patient” organizations in leading ME patients “like lambs to the slaughter” ensuring that we will have another 30 years of misinformation to our medical professionals and recommendations that we be given antidepressants, CBT and GET.

    Participation in P2P by presenting comments, no matter what the text of the comments, will be used to “prove” that patients approve of the P2P and its results because they participated.

    If someone wants to protest, he or she does not join the action which they are protesting. No! What they do is present their position elsewhere. My advice would be for anyone who wants to protest to send his or her objections to the Secretary of HHS and the Director of NIH and not to communicate in any way with the P2P panel or administrators.

    My letter, which anyone may use as a form for his or her own comment, is here:,21123.0.html

    Let us not join the government in destroying us!

    Patricia Carter, Esq.

    • Jennie Spotila says:

      Writing to Secretary Burwell and Dr. Collins are valid forms of protest. In fact, that’s what Mary and I did when we wrote to Collins last May and asked that he cancel P2P, or at least attend to its fatal flaws. I certainly have no objections to people trying a similar tactic now.

      What I most certainly DO object to is being told that my work on P2P makes me a collaborator, or that I am leading lambs to the slaughter. It’s fine if you disagree with my tactics, but I have just as much right to pursue them without being insulted by a fellow patient as you do.

      Until Mary and I started kicking things up in the spring, NIH believed that the patient community generally supported P2P because no one was saying anything about it. Silence guarantees one thing – government full speed ahead.

      This evidence review cannot be allowed to stand without criticism. The P2P Panel cannot be allowed to hear only one side of the story with no objection from the other side. And I will not make it easier for NIH to pursue its agenda by silencing myself.

  5. Meghan shannon says:

    I agree with you mary. Why I went to IOM in May . To see and hear firsthand what is going on. I was stunned at the make up of the meeting. Mostly those who are “CFS” friendly. Notice I am not saying ME friendly.

    The “friendless” including the patient rep. Most Are very new to this 33 yr problem. and they are very focused on a new name and definition for CFS. No one in that room really seemed to grasp that ME is not CFS .

    Glad a well person and scientifally oriented person such as yourself continues to ask the questions an continues to point out the obvious stupid words used to describe people who are physically sick. Also keeping your head regarding approach in change. Thank you meghan

  6. Vickie says:

    Jennie, I read your last 3 posts and want to get more involved. My problem is that there is too much information for me to act on. I have registered for P2P but that’s all I’ve done.

    Would it be possible for you or someone reading this to create a bullet list of things those of us who agree with this post and your recent posts can do? For example, who we should contact about what? If we are registered for the P2P online is there something we can do now? I don’t care if the list is long. This would make it easier for our friends and family to help, also.

    I can hear someone saying “but this information is all on Occupy CFS!” and I know it is.

    • Jennie Spotila says:

      Yes! We are working on a list of critical points in the evidence review, and we hope that people will use that as the backbone of comments submitted to AHRQ on the review. Look for that early next week.

      We will also be providing other things to do between now and the meeting in December, and things for the meeting itself. I’ll start thinking about a list of options, who to contact and about what, as well. Thanks Vickie!

  7. Mary Dimmock says:

    @Patricia Carter

    Thank you for your comments.

    As Jennie says, if you and others want to write a letter to Dr. Collins and Syliva Burwell about it, by all means do that. She and I tried that route and failed but I still think it’s a great idea to keep up that pressure on HHS leadership.

    At the same time, we all know that communications directed at HHS have failed to produce any substantial change for thirty years. We also know that P2P is not the only issue holding us back. For instance, HHS has refused the latest recommendations for an RFA. That is why I’d recommend that we use all means available to us to protest both P2P and all other aspects of ME public policy. I’d also recommend that we direct that protest toward both congress and the media to build the support that will be needed to change HHS’ policy toward this disease.

    Regarding how HHS will interpret our involvement in the P2P process: with all due respect, I view it very differently. Our silence will be taken as acceptance and agreement. I will not squander the opportunity to protest this report by commenting on it directly. That is especially important to do when all comments on the evidence review must be addressed and become part of the evidence review record, something that does not happen with letters sent to HHS leadership. Beyond that, I think that we are in a position to shine a desperately needed light on the obvious flaws in this report, flaws that will hold patients hostage for another thirty years. If we do choose to not do that, who will?

    Your statement that “anyone who presents comments to the P2P is joining the government agencies and our phony so-called “patient” organizations in leading ME patients “like lambs to the slaughter” is untrue and deeply offensive to me as the mother of an ME patient. It also demonstrates a serious lack of respect and understanding for those who are equally committed to attacking HHS policies and actions towards this disease but choose to use different strategies than you do. Losing sight of goals we all share and attacking each other on differences in tactics is a waste of precious energy that we can not afford.

    I am in this for one person – my son – and I am going to use all means at my disposal to recover his future.


  8. Dave says:

    I do not believe there is harm writing to Collins or Burwell. But, in my experience, they are inward looking, and will engage in institutional persistence. I think you may fare better with finding a sympathetic ear in Congress and asking for them to arrange a meeting with NIH staff.

  9. cathy l says:

    Thanks Mary, Jennie and Patricia for all of you advocay efforts, I read all that all of you write and appreciate it very much.

    But sometimes I just want to say–can we all just agree to disagree on some points but stop the attacks on each other?

    I’m fairly new to this disease and trying to advocate in any way I can but it’s extremely fustrating sometimes. It seems that many of the active activists are at odds with each other and the rest/majority of the popuation with MECFS are just not able or willing or intersted enough to speak up. I’m sure the AIDS activists and patients/advocates of other disease don’t all agree with each other on all issues, yet they find a way to move the agenda forward, together.

    I’m actually getting a little tired watching the 21st century cures iniative round tables across the country where various advocacy and research orgs and patients themselves are all getting a seat at the table with congressional representatives, NIH, CDC, FDA reps and whole host of others. I just can’t help wonder–where are the ME reps/advocay orgs?

    I know most of you have been fighting this fight a long time but I can’t help think that if there was just a little more organzation, agreement and general leadership maybe we could can build the numbers we need to be heard?

    OK, enough of my rant.

    I’ve already sent a letter to the 21st cures committee on a number of MECFS issues, and I’ve written to my NY senators regarding P2P, I’m tweet tweet tweeting away #stopp2p4me, and I’m working on other letters. I do want to respond to the AHRQ report, but will need some help so any content you can provide Mary and/or Jennie will be much appreciated.

    With that I say good night ladies. I’ve had a hard day with my sick horse and I need some rest.


  10. Mary Dimmock says:


    Thank you for your thoughtful message.

    You said – “I know most of you have been fighting this fight a long time but I can’t help think that if there was just a little more organzation, agreement and general leadership maybe we could can build the numbers we need to be heard?”

    You are so right.

    Hope your horse is better soon

  11. kathy d. says:

    By all means necessary, a slogan to be valued.

    People in the ME/CFS community should organize, write, speak to whomever they think will listen and also to put pressure on governmnental agencies and officials.

    We should all do whatever we can or not do it, but we should support each other and those affected by the disease.

    Emulating AIDS activists is a great idea. I wish we could do that. They really made things happen, forced the government to get busy with research and treatments and also more humane attitudes towards people with HIV and AIDS.

    Most of us can advocate in other ways, while wishing we could travel and sit in, in the spirit of the Civil Rights and AIDS movements.

    Everyone should make their own decisions and do what they think is necessary. Activism is always helpful even if the government isn’t hearing us now. We have to keep on trying and being loud and present about it. (If some people don’t want to, they don’t have to do this.)

  12. Gina Bettor says:

    @Patricia Carter
    I lam not one to take sides, however I agree with Patricia Carter. I sent 3 emails of opposition and protest. There was an excellent time line by Patricia Carter in MECFS forums. They have disdain for the ME population. I am sick 21 years and just as sick of the fake advocacy from our government. The timeliness and secrecy should make all patients take pause. We need transparency and the Courtagrees. Jeannette. Buemeister just won her FOIA with damages to pay court fees, while the DHHS and asst secretary laughed us off.I am for complete protest and opposition. They still haven’t responded to the court with documents.

    I wish I had a way to link the CO-CURE post and timeline. They have caused crashes, laughed in our faces and are still withholding details against sub committee members tireless efforts for transparency. They are wasting our pittance of research budget, doing the exact OPPOSITE of sub committees. Then they cancelled 3 subcommittees that spoke out. WE MUST ASK WHY AND SAY NO MORE DICTATORSHIP! THE CHARTER OF CFSAC WAS TO PREVENT THIS!

    • Jennie Spotila says:

      Gina, I don’t think anyone disagrees that the government treats us with disdain. None of us think that people shouldn’t protest. What I object to, and what Mary objected to in her comment, is being told that MY way of advocating and protesting is WRONG. That somehow, by choosing to advocate and protest the way I have, that I am betraying the ME/CFS population. That is simply not true. What Mary is doing is just as legitimate as what Patricia and Jeannette and others are doing.

      It’s a waste of energy to point fingers at each other, or say it’s “my way or the highway.” I want Patricia, Mary, Jeannette, you, readers of this blog and all ME/CFS advocates to DO SOMETHING. Do what you believe it right. And never ever ever take your eyes of the real opposition – the federal lack of response to this disease. Write to HHS. Write to the President. Call your Congressman. Participate in a demonstration. Submit a comment on the evidence review. Whatever. Just do something.

  13. Billie Moore says:

    @ Cathy I. The small FDA Treatment Team has been working for a few weeks on the 21st Century Cures action by Congress. (This is the team that started the movement to get the FDA to hold a stakeholders’ meeting, which became the April 2014 FDA meeting, and the target for the thousands of emails that went out to push the FDA was Congress, the FDA, and other govt. reps.)* We were hoping that the 21st CC roundtable would be having one in January that ME/CFS could get into, probably along with other similar diseases. Not to be. Congress decided that it had enough of roundtables, and they are going to go straight to legislation very soon (before elections). So the team came up with a letter to be sent by patients and advocates to and to FDA Director of Drug Evaluation and Research, Janet Woodcock: Please send a copy to each email address using the letter as is, or feel free to change or add to it.

    The following is to be sent to

    To Members of the 21st Century Cures — on behalf of the more than 1 million Americans suffering and dying from Myalgic Encephalomyelitis (sometimes referred to as Chronic Fatigue Syndrome but preferably as ME/CFS by government agencies and patient groups) we ask that the following be included in your 21st Century Cures Legislation.

    1) The 2015 NIH budget should be commensurate with the size of the disease and/or the cost to the nation. For example, Multiple Sclerosis (MS), a disease the FDA states is similar in seriousness to ME/CFS but with only 400,000 patients – receives a $115 million per year in NIH funding – and there are already nine existing drugs for MS. People with ME/CFS have NO approved treatments yet more than 1 million people are sick (versus 400,000 for MS), and it receives only $5 million from the NIH. That is only $5.00 per patient! This is a ridiculously small amount – just about nothing. Yet CDC studies estimate it costs the nation easily $22 billion per year. Other funding levels for 2014:

    ~ Anthrax $72 million (who gets anthrax?)
    ~ Attention Deficit Disorder $50 million (not life threatening)
    ~ Small pox $31 million (no one gets small pox anymore)

    2) One drug – Ampligen – has shown promising results against ME/CFS. There were significant improvements in approximately 40% of the patients on Ampligen! Many patients in the trials have been safely on this drug for years. Yet the FDA continues to drag its heels in approving it. We request that the legislation reflect that if a drug shows promise and the top experts in the disease believe the drug should be on the market, then FDA should use its existing regulatory authority to approve the drug, and in collaboration with the experts and the sponsors develop the appropriate follow-up studies and REMS program. The expert physicians that work with the patients and the drug have the expertise and knowledge needed to provide sound judgment. This will allow for a large proportion of new ME/CFS patients’ lives (and those with other similarly ignored diseases) to improve. Leaving patients without treatment is NOT in the best interests of public health; ME/CFS patients die early deaths from cancers, heart disease, suicides (because there are no drugs and no hope).

    3) FDA should be required to provide the same type of flexible approach to chronic illnesses with few or no FDA approved treatments that it does to those considered fatal (able to cause “imminent death”), to rare disorders, or to disorders that produce epidemics. ME/CFS falls between the two as do many chronic illness, yet cost families and the nation greatly. The fact that 1,000,000 people with ME/CFS have suffered for decades without a single FDA-approved drug requires the FDA recognize that a new approach with more flexibility is called for in this disease and other diseases which the FDA has failed to support. After DECADES of inaction, IT IS TIME.

    • Jennie Spotila says:

      I just want to comment on something in this suggested email. Anthrax and small pox are both potential bioweapons. That’s why they get so much in research funding. To say “who gets anthrax” ignores the people who died of weaponized anthrax in 2001. It is true that no one gets small pox anymore, but weaponized small pox would kill a third of non-vaccinated people. Criticizing those particular diseases and their funding ignores the reality of post-2001 research.

      As far as ADHD goes, it is not life threatening but it still causes impairment. It is seen as a disorder of children, but also affects adults. I don’t know what the economic burden of it is, but I imagine it is significant given the school and work difficulties that affected people face.

      I’m not saying that these disorders deserve funding more than we do. But I think better examples could be found of diseases being funded way out of proportion to the personal and economic toll.

  14. Billie Moore says:

    That last comment got sent before I was done. The reason for mentioning Ampligen is that we want it approved. Pure and simple. This drug has helped hundreds safely for years, and our contention is that it is up to the patient and his or her doctor to determine if the patient would like to try it – as is the case with most drugs. It might help thousands more patients recover some of their lives. But beyond that, ANY drug now being used off label that would be approved by the FDA would make this disease REAL. Wouldn’t necessarily cure the disease but would interest Pharma in trying to get drugs into the pipeline. And possibly the most important point, long term, is that the medical community would suddenly see this as a legitimate physical disease. This has happened with the original approval of Lyrica for FM – not a cure, but FM is generally accepted as real, and more drugs came along later, and more are still being developed for it, and MUCH research is now being done on FM. The FDA does have existing regulatory authority to allow it to be flexible, and it is being flexible on many drugs, but nothing for us. If you don’t want to mention Ampligen, just omit it but keep the thrust of that paragraph. Send to as many people via as many ways as you can.


  15. Billie Moore says:

    Regarding NIH says NO and NO: please see comment #17 in that blog for a cogent comment by Ken Friedman.


  16. Ess says:

    @Gina Bettor
    I wholeheartedly agree with your comments agreeing with Patricia Carter! Complete PROTEST and OPPOSITION!

  17. Gina B says:

    Mary and Jennie, I agree with Do Something! I apologize if I came across as being against you two in any way shape or form. If not for your blog I would have never known the harm P2P would bring. At that time I was upset about the IOM. I had a terrible feeling in my gut, as TMH committed suicide shortly after the announcement. He was proud he in a large part created May 12th. I am in baby steps compared to your advocacy.!

    I am happy you are suggesting people advocate in a way they are comfortable. I am better on the phone than computer. Please don’t think of my commitment to protest is in any way against either of you. We have to to something. I have nothing but the sincerest respect for your knowledge and amazing advocacy!

  18. Deborah Waroff says:

    As far as targets for protest, I think the subcommittee of Energy and Commerce (house) that is looking into all things healthcare is a top priority, along with the always important health and welfare subcommittee of the appropriations committee. Rep. Upton (R.PA) heads the Energy and Commerce subcommittee, which exact name I forget. Rep. Upton and colleagues seem really ready to tear into the government. I think it is always good to copy Harry Reid on things, as he has consistently tried to help us. And we need to get the attention of Mary Burwell, who is not yet set in her ways. AND showing up to physically protest in person can give the issues visibility and give journalists a peg for a story.

    • Jennie Spotila says:

      I agree that targeting the members of key Congressional committees is the best strategy. Some efforts in that regard are underway, but we need many many more people to join in.

  19. Deborah Waroff says:

    Rememer, Collins is totally aligned with Fauci and indulges his hatred of M.E. and us patients. However, Mary Burwell has shown inititiative and intelligence in dumping Koh following David Wright’s protests. Koh has been Fauci’s lord high executioner in respect of M.E.. I strongly suspect that Wanda Jones’ presence in Koh’s office, with her extensive background of CFSAC, helped them to design the double-barrelled IOM & P2P attack. I am not saying Ms. Jones is strictly for or against us, I don’t know enough, but she certainly had the background knowledge that would have given Koh an attack strategy.
    Also, please keep in mind that AS FAR BACK AS 1987 Komaroff et al were publishing accurate epidemiology on the immune nature of M.E. and more. Psychological research did not come first; it cam later and was designed to obfuscate the truth as already disclosed by Komaroff, Peterson, Cheney et alia.Not to forget the work Melvyn Ramsay and others in the U.K had compiled in the 1950s, 1960s and 1970s.
    FIRST THERE WAS TRUTH. Then came the coverup.

  20. Deborah Waroff says:

    Dr. Collins advertises himself as a devout Christian. He is also a boxer (every morning) and motorcycle enthusiast.
    If you do think it is worth writing him you might want to make some comparisons between the conduct of the NIH regarding M.E. and the teachings of Jesus and apostles.

    • Jennie Spotila says:

      Deborah, let me be very clear. I will never condone advocacy that makes accusations or draws analogies based on a person’s religion. Attacking Dr. Collins’s policy decisions based on his professions of personal faith is offensive to me. I certainly would not want such accusations thrown at me.

  21. Billie Moore says:

    Jennie, I see your position regarding my disease-funding examples but do not agree with it. Is ADHD worse for its sufferers than ME/CFS? Not in my book. Is the threat of an anthrax attack worse than what ME/CFS patients suffer from? While we need to be prepared, does that disease warrant $67 more million every year than ME/CFS’ $5 million? Not in my book. Ditto small pox. If those of you who want to send the letter in my previous post to 21st Century Cures (Rep. Upton heads this initiative) and are uncomfortable with my choices of diseases which show how underfunded ME/CFS is, here is the link for the NIH 2014 funding list – you can make your own choices. (Try not to choke on HIV/AIDS getting $3+ BILLION for the same number of sufferers and many drugs approved for years.)

    I urge you to write. We’ll never get drugs approved without pressure on the FDA.


  22. Ess says:

    @Billie Moore
    Thank you very much, Billie Moore, for calling our attention to Ken Friedman’s ‘cogent’ comment #17 on NIH says NO, and Also NO.

    This is a MUST READ comment; thank you to Ken Friedman for sharing and EXposing!

    (By the way — I was looking for Ken Friedman’s name–it is Billie Moore’s name at the side bar #17.)

  23. Gabby says:

    Thank you Mary for this post. I am grateful to both you and Jennie for all the work you have done on this process, whether writing blogs to alert us to the pitfalls, writing letters to the NIH and keeping us abreast to how we can advocate for our benefit. I think that you are very aware of all the dangers and are looking out for the interest of the patients.

    I also understand other advocates who feel that they want to protest the whole process. They choose not to comment on specifics of the review. etc. This is because they feel that the process itself is illegitimate. i don’t think that anyone is condoning silence. I think that these other advocates feel that we as patients will be better served by not submitting comments of how to improve the process but by protesting the process in whole.

    I don’t think that at this point anyone can know for sure which of these tactics will be more productive. At the end of the day, we are all seeking the same result. We do not want the IOM nor the P2P process. Which tactic will get us at our needed end point?

    I don’t want to be pessimistic but, what did we gain by all the time and effort that was spent looking into the IOM committee members. We don’t even know if they were read. We certainly did not see any feedback on it.

    Why should we think that they will listen to us now? I guess we can say that at least our comments and concerns will be read and considered. The problem is that is they are read, considered and then determined not to be legitimate. Where are we then? They will say; we gave you the opportunity to comment. We read your comments but, we decided your comments were not strong enough, hence we are staying the course. This, in their mind will mean that “we had a stake in the process”.

    At the other hand, if we protest loudly (whichever way we can do it) against the whole process in general and say it is not a legitimate process, they can’t claim that we had a chance to be part of the process. They will still go ahead and ignore us.

    I don’t know which is better. I also don’t know how we can comment on just parts of the review when the whole review is based on something that is not even ME? The whole design is flawed. How can we just comment on parts of it?

    Jennie, you are the one who kept informing us of how screwed up all this is. It was set up to fail. Shouldn’t we then protest the whole set up?

    • Jennie Spotila says:

      I welcome targeted protests of the whole P2P set up. The letter Mary and I sent to Collins in May was exactly that – a very strong, well-reasoned and well-supported protest of the P2P meeting. I continue to object to the P2P meeting through all the work I am doing to shine a light on it and make our community aware of what is going on. I have not made suggestions on how to improve the process, unless you count my loud calls for the inclusion of the critical definition question as a suggestion. My comments on the evidence review will not be suggestions. They will be well-supported comments on how that review has failed. It is important to get that on the record and require AHRQ to respond in some way.

      It is important to keep speaking truth to power. There are many ways that people can do that. I do not claim that my way is the only way. I’ve tried to motivate people to take action. I encouraged people to support our letter to Collins, to write to Congress, to speak up in every way possible. Whether people organize a write-in campaign to the Office of Disease Prevention, attend the meeting and ask tough questions, participate in a wheelchair sit-in, or any other means – we need it ALL. Protest is effective when it makes the people in power uncomfortable, when it forces them to take notice. A large enough letter campaign to Obama or Burwell will eventually be punted down to Collins. Press attention on the P2P fiasco would be even more effective because it publicly calls NIH out.

      I echo what Mary said. The time has come for every. single. person. who is capable of doing something to do it.

  24. Patient says:

    @Jennie Spotila
    Jennie Jennie Jennie,

    when are you going to open up your eyes.
    Deborah is correct.
    Collins is a hypocrite, he is a devout nothing!
    He doesnt even know the Bible! If you read his books you would see that.
    If you read the Bible you would know that too,but most people in this community does not
    Collins is definately aligned with Fauci who has been covering up this illness for years!

    There is no being nice with these people, no sending nice letters and point out
    what they do wrong or write, there is no cooperating with them at all.
    Anyone who goes to the P2P is nothing but but a fool!

    Look back in history, did AIDS ACT Up people do that until the congressional hearings?

    • Jennie Spotila says:

      “Jennie Jennie Jennie, when are you going to open up your eyes.”
      I think what you are actually saying is “Jennie, when are you going to agree with me.”

      “Collins is a hypocrite, he is a devout nothing! He doesnt even know the Bible! . . . If you read the Bible you would know that too”
      Actually, I have read the Bible. But when I read your comment, all I can think of is John 8:7 (Let he who is without sin cast the first stone) and Matthew 7:1 (Judge not, that ye not be judged). I won’t pretend that I know how well Collins lives his faith.

      There is no place for attacking an individual’s religious beliefs on this blog or in advocacy. There is no place for accusing anyone of not adhering to their self-professed beliefs. If you want to do that in your own home or on your own blog, by all means it is a free country. But there is no place for it in my home or on my blog.

      Anyone who goes to the P2P is nothing but but a fool!
      Again, I will point out that insulting me or any other advocate as a fool for pursuing a specific advocacy strategy is disrespectful and offensive.

      Look back in history, did AIDS ACT Up people do that until the congressional hearings?

      The HIV/AIDS advocacy movement was more than just ACT UP. While ACT UP pursued their strategy, other HIV/AIDS activists pursued other strategies like meeting with members of Congress, speaking to the media, arranging for adequate social services for dying patients, and mastering the science. All of those strategies were necessary. I believe all of those strategies are necessary in our case, too.

  25. N A Wright says:

    The challenge is to find a form of dialogue that is not just facile opposition. Protest is never a useful end in itself; to achieve something better than the status quo there has to be a clear statement about what is better, why it’s better, and how one gets there. The administrators at the DoH or whoever it is that is deemed to be ‘wrong’, are not Lyndon B. Johnson circa 1968, the parochial problems of ME patients are not genocide in SE Asia, and Hendrix, Dylan and Country Joe are not providing the theme music and campaign slogans. At times one could be forgiven for thinking that the model being proposed for ME advocacy is being taken from historically untruthful film roles played by idiotic racist drunk Mel Gibson, or maybe it’s just the adolescent fantasy of Star Wars.

    As for the appeal to ACT UP – even if that movement’s self hype were all true (it ain’t) the situation is so far removed from ME/CFS as to be wholly irrelevant. Typical ACT UP activist in 1985 – 30something, economically active, few family obligations, not yet sick – typical ME/CFS activist 2014 – middle aged, not working, many family obligations – and ill.

    There is a strong message to communicate – the patent unfairness in US Federal research funding, the over reliance on psychological studies carried out, outside of the US (rarely a basis for trusted authority by the US health bureaucracy or Congress) and the increasing picture of a complex illness with numerous organic dysfunctions that need to be addressed. None of this though will be listened to unless there is engagement and unless there is the proposition of partnership – that is patients actively supporting the bureaucracy, given the right conditions. Placard waving protest only works if there’s someone in power who needs to take notice – mostly there is no one that needs that. In contrast requests for negotiation, for the administrators to be involved with the citizen are far more difficult for the bureaucracy to ignore. Mary and Jennie are articulating the grounds for unavoidable engagement, and my guess is that there will be people within the bureaucracy who will actually welcome that because it will actually solve some problems for them. Progress is never guaranteed but engagement no matter how unpalatable that may be, is the only viable option to achieve change.

  26. Krey76 says:

    I am a relatively new patient. This infighting is ridiculous and futile. I was raged at by a patient early who is a retired advocate early on in my diesease when I posted my very first blog post because I used the word M.E./CFS instead of just M.E. and I also just recently witnessed a patient’s religious belief system get attacked elsewhere, accused of writing something she didn’t write, and I had proof. I also witnessed her get badly scapegoated on a public page where someone put up a post that she had written for another website, even though she had nothing to do with that post being put up on that page that day. Because I stood up for her in public without naming names or even naming the private secret group, people began to build a case against me personally inside that group insinuating all kinds of insulting things and accusing me of inaccurate actions. The paranoia was breathtaking. I was tried and convicted for my gasp (having some integrity) and speaking up for my friend by being kicked out of a very large group whose information was very valuable to me all because a rather new and powerful advocate decided that this should be so. I was attacked and insulted on that patient’s page as well. Called unprofessional and implied that I was just ignorant and “didn’t understand what a private group was.” Bull pucky. My public post was intentional. I knew exactly what I was doing. I was calling out bad behavior that was taking place behind closed doors and in public. Because of the damage I’d seen in public and in private I decided that someone had to stand up for her because I knew what damage it was doing to her personally. Never mind I have three college degrees. She decided all by herself even though she was not an administrator that I should be kicked out of group. I had already left the private secret group. I wanted nothing to do with it. What took me by surprise is that I was also ejected out of a closed group that has over three hundred and some odd people in it, one of which I had no intention of leaving. Wow. That took my breath away. All of this drama has been deleted and in the past, but until this “inner mean girl” scapegoating of innocent patients and ganging up on and insulting advocates who don’t agree behavior stops I’m afraid we will never get anywhere. Ironically the one who attacked the other person’s religion privately and doggedly bashed her publicly turned around and had the gall to say it was nothing personal. Really? How personal can you get? I was up all night behind the scenes chatting with this attacked and scapegoated writer who was beside herself with hurt and distress that night. Neither one of us could sleep. So nothing personal? Oh I think not. Her mailbox filled up with hate mail and she is not even an advocate which I guess is her biggest sin, that and that she wrote a book that some patients don’t like. I was a game player and was doing my best, but now I struggle with doing anything at all. Oh yes, what they didn’t know is that I am married into an extremely powerful political family with deep connections in D.C. and could be even more deeper and more helpful for the M.E. community if Hilary is elected. Nice job. Washington is a small town in many ways. Sorry to vent on your page Jennie, but I’m struggling with not just walking away and I know that’s not the answer. But I can tell you this, because I stood up for a friend, I have been deemed an enemy.
    How profoundly unhelpful.

    • Jennie Spotila says:

      I experienced something similar – being kicked out of a group for something I didn’t do, simply because someone accused me of doing it.

      And I completely empathize with struggling on whether to walk away. This kind of behavior among advocates is more hurtful than disrespect from people outside our community. And to make it worse, I know for a fact that HHS looks at the “mean girl” behavior and believes it proves how crazy we are.

  27. Ess says:

    We are not crazy. We are all very sick–and so wanting of REAL BIOmedical help to be well and get our lives back!! HHS is full of corruption–that is why we are where we are today after 30+ years of obfuscation, LIES, deceit and cover-ups.

    That is why–with the corruption–what is going on with IOM and P2P makes NO good sense–and is completely IRrational; it doesn’t have to (make any sense) for The Powers That Be–they are doing exactly what they want for their PREdetermined outcome of IOM and P2P redefining ME/CFS–and we all knew/know that–no surprise there.

    And to be sure–TPTB @ HHS are doing great harm to a large patient population–they also have a goal of divide and conquer as part of their strategy. They don’t care that this is a PLAGUE; they don’t care that this affects children too–AND steals their young lives away.

    No, we are not crazy–we are good people struck down with an horrific illness–buried in the corruption @ HHS. We need Whistleblowers!

  28. Krey76 says:

    Exactly my point, Jennie. People seem to forget that all of us have M.E. and this drama that happens is an energy drainer and it does make us look crazy. We are not. It makes my heart hurt to know that HHS is laughing at us because the mean girl fighting is going on in front of them. I had no idea. That is extremely damaging. No, it’s horrifying and completely counterproductive. If we don’t clean up our acts in front of the power brokers in Washington, we really will never get anywhere. And yes one can blame corruption in D.C., sure that’s easy; it’s also a sweeping generalization. My sister in law is not corrupt. To not get that the behavior of the advocates in front of them is having an impact IS crazy. I spent thirty years in higher educational institutes where the politics among the faculty and administrators were incredibly toxic. You have got to pay attention to your own behavior, figure out how to play the game, and act accordingly. Note I do not consider myself an advocate. I’m an educator to the bone and I try my best to educate lay people on my facebook page as best as I can without being obnoxious or beating the drum all the time. That gets old too. I have a mixture of friends. Going back to my life as a writer: one must consider your audience, in writing and in real life and behave accordingly. It’s sort of simple, being nice, being polite, being respectful gets you way further down the road if you are standing in front of people with power. And being insulting in writing is not going to get you anywhere either. I spent thirty years teaching students the art of rhetoric, which is the art of REASONABLE argument and logic. If you insult or offend a government official, well that’s just stupid. Government officials are bureaucrats, change positions a lot, and are usually overworked and underpaid. My brother also works for the federal government although he is not in any position that could help us and he is not corrupt either. Ok, off my soap box now. Thanks for the incredible work you do, Jennie. I am grateful for you.

  29. kathy d. says:

    We need whistleblowers and mucktaking journalists, and all types of action and protest. I say whatever form of protest one wants to utilize, fine.

    I believe that it was the ACT-UP AIDS activists that got serious attention paid to the HIV/AIDS epidemic. People were dying everywhere. They had sit-ins in D.C. and in New York all of the time. They had the “Silence = Death” campaign; stickers and Tshirts were everywhere. And, in addition to them were people organizing in other ways.

    I wish we could do what ACT-UP did, be everywhere and doing everything, getting media attention constantly and embarrassing the do-nothings in the government, including in medical research. They figuratively lit a fire on this issue, and got things moving.

    Most of us can’t do this, but can do other things. The government is not increasing funds for medical research. Budgets have been cut. Lots of money for war, weapons, drones, etc. Human needs are not a priority.

    So, we have to be loud and out there, but we should do what we can, and for many of us, it’s through phone calls, social media, and if we’re in some kind of decent shape, albeit temporary, attending meetings and speaking out. But we have to be insistent! This is our lives. We have to push and pressure verbally and in writing and using the Internet.

  30. Ess says:

    This is real life in the reality of ME/CFS and the powers against us for 30+ years; we are not in a classroom–EYES WIDE OPEN as to what we are dealing with.

  31. Krey76 says:

    I am very aware of what we are dealing with. My eyes are WIDE OPEN. We need to fight anyway we can, but by god fighting with each other isn’t the answer.

  32. Krey76 says:

    Patients who are insulting or belittling other patients who choose to take a different path other than their own path is troubling to me. As a relatively new patient I have this to say and it’s an old chestnut: United we stand (with respected differing of opinions), but divided we will surely fall. My take is we need to do it all. This is not a black/white issue and thinking with an either/or mentality is low level logic and faulty. We need fighters outside the process, and we need fighters inside the process. One of my favorite quotes from Zen Buddhist Tich Nat Hanh is this: “Am I sure?” Folks who assume the outcome of any process can be wrong. No one is a mind reader and no one can predict the future, not even those who say past behavior is a great predictor of future behavior. So everyone needs to ask themselves that, especially those who are entrenched in their mind that their way is the RIGHT way and the ONLY way. “Am I sure?” As for myself I haven’t decided what I’m going to do. I’m still debating in my head. I might do both.

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