Which Paddle?

crossed paddles copyThe IOM study is moving forward, and fast. I can confirm through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee. Those nominations are due today. I can also confirm that the public will be given twenty days to comment on the provisional appointment list, although I do not know when that list will be posted.

So where do we go from here? To borrow yesterday’s analogy, if the canoe is pointed at our goal of the right clinical definition for ME/CFS, how do we coordinate the paddling? I’ve seen great discussion on blogs (including the comments here), forums and by email. I have personally struggled with identifying the right next steps. There are two basic approaches, as I see it.

The first approach is to accept that the IOM study is going forward, and contribute to the process as much as possible. Some people in this camp believe they will be able to meaningfully influence the panel selection and the conduct of the study. Others don’t really believe they will have substantial influence, but see no alternative to engaging constructively. Action from this position includes making nominations to the panel, commenting on those nominations, participating in other opportunities for feedback as they arise, and monitoring the process closely.

The second approach is to continue to oppose the process. People in this camp want the IOM study canceled. Full stop. They believe that not only will we be unable to influence the process, but that the deck is completely stacked against us. Many believe, based on the Gulf War panels and other precedents, that the outcome of the study will be bad. Action from this position includes petitions, contacting Congress, email campaigns, and calls for public protests. (Edited to add: After I published this post, I learned about an excellent and articulate summary of this second approach. It contains the counterarguments to what I say below.)

I did not want the IOM study. I opposed it vigorously, as readers of this blog know. I am very worried about the outcome. I am insulted by how it was created in secret and concealed not just from advocates, but from all but one voting member of the CFSAC. The way HHS has treated the advocacy community, and failed to show the 35 experts even the basic courtesy of an acknowledgement of their letter, is simply outrageous. Given all of that, it sounds like I should be following the second approach, right?

But the problem with the second approach is how to transform my opposition and disgust into successful action. The government can always rescind a contract, but has it ever done so with IOM? Given the relationship between the National Academies (of which IOM is a part) and the government, such a rescission would be a politically loaded action. Petitions, email campaigns and protests are all effective tools, but we need much greater numbers and we have no time. None. The IOM is plowing ahead full speed.

Furthermore, even if we could force the rescission of this contract – what then? I know many advocates believe that the Experts’ Letter calling for immediate adoption of the Canadian Consensus Criteria is the solution. But I heard from a highly placed source at HHS that the government will not accept a definition without their own thorough assessment, if not influence. HHS will want to get its hands on any definition before accepting it, and they will not accept CCC as is. So even if we get the contract rescinded, we will be back where we started except everyone on both sides will be even more pissed off.

I’m between a rock and a hard place, as I contemplate how I should engage in the process. I don’t see much chance of success for either option, frankly. Rescinding the contract is an incredibly steep hill to climb. But I also do not have confidence that I can have meaningful influence over the panel selection or how it does its work. And the third approach – doing nothing – is absolutely not an option for me. I will not retreat to my bed, pull the covers over my head, and wait for it to be over.

For me personally, choosing an approach is a matter of conscience. My personal choice is to follow the first approach. I will monitor the IOM study as closely as I possibly can. I will participate in every opportunity for comment, and I will advocate for this process to be as open and transparent as possible. I will encourage others to do the same. I will approach this study as I do the CFSAC: with skepticism, and with the goal of creating accountability for their actions.

As I said yesterday, there are things I agree with and disagree with on all sides of this issue. I don’t agree with everything in the Experts’ Letter and I don’t agree with everything in the Association’s statements. I find points of agreement and disagreement in every discussion about the IOM study that I have observed or participated in. But my only goal is to follow the course that I believe will lead to the best results for the ME/CFS community. I fully support every advocate’s right to do the same. I do not believe my paddle is better than someone else’s. What I hope for is that regardless of which paddle you choose, you will be willing to work with the other people in the canoe.


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45 Responses to Which Paddle?

  1. Gabby Klein says:

    Why is it that with definitions of other diseases, HHS is able to accept criteria from the experts in that field. They do not have to go through this IOM fiasco? Are patients with other illness more important citizens of this country? Is my tax dollar worth less than theirs?

    • Jennie Spotila says:

      Actually, this is an interesting question that I haven’t had the time to research. How have other definitions been developed and how much did the government participate in the processes?

  2. Erik Johnson says:

    There is an easy way to tell if the IOM is sincere in clearing up the immeasurable confusion created by the CDC.
    It is whether or not they care to remember why there IS a “CFS” and “redefine” the illness correctly… exactly as it originally was.
    Or conspicuously find reasons to neglect how this syndrome began.


    A Brief History of Myalgic Encephalomyelitis and an Irreverent
    History of Chronic Fatigue Syndrome
    -Byron Hyde M.D.

    The 1988 CDC definition did several things, all of which caused
    immeasurable confusion.
    Why did the 1988 CDC definition damage our knowledge and
    understanding of the epidemic and endemic disease? Remember that in
    describing the Lake Tahoe epidemic this committee were describing a
    typical Myalgic Encephalomyelitis Epidemic

  3. Ess says:

    Excellent question and comment—WHY, indeed–makes NO good sense and smacks of WRONG DOING and hidden agendas and NOT wanting the answers to this disease to come out!!!!!

  4. Christine says:

    Sure, but they are not alone in this, with the help of the CAA and our own advocates maybe?

    You ‘heard’, but nothing is written in stone and neither is there an official statement of the HHS about the letter from the specialist or the CCC. I really doubt that if 35 specialist put their weight behind this and take action that the HHS will still not accept this. What do they have to loose or maybe we should ask what do they have to gain?
    It’s my opinion that if you give up before there is an official statement we are never going to get anywhere. That has been our history up till now. Take some action, get barked at and threatened and we back off with tails between our legs. And they think they can get away with that this time again, because that is how it was up till now. Be bullied in a certain direction even though it is the wrong direction.

    I fail to understand why this can all go down so smoothly with the advocates, why isn’t there more outcry than there is now? It’s a handful of people who are fighting the rest already rolled over and played along with the HHS and IOM. Hello people it’s my life we are talking about here!
    I don’t have time to wait till 2015 till the IOM study will be finished and than needs to be incorporated in whatever, studies for meds and research will than start with an official definition. I will be death and gone by than, I need action now, with the CCC and not in 5 years.

    No I will not support the IOM, give input or comments and I will not support any organization, advocates or others who sells themselves out to the government and IOM even though they are suppose to represent those patients who need answers NOW and not in 5 years. I will do everything in my power to convince others that this is so wrong and to not support these organizations either. I think it’s HUGE betrayal that they lost sight of what and who it is they are fighting for.

    As I noted and wrote about before, it seems that the only group they are prepared to fight for is the average CFS patient, the one who is still functional and has time to wait this out.
    People like me who are bedridden for years and have almost no hope left are being thrown out with the bathwater. And than when there is another suicide there will be a huge outcry and a couple of days later it’s back to business as usual. I’m disgusted, sad and angry. if you really, really want those suicides to stop you need to be prepared to take action and do something meaningful, something that gives hope. Otherwise it’s just empty words that you write in press releases, on FB walls, in forums, just to make you look good. A bag full of air.
    Hope is NOT the IOM. Not for patients who are at that suicide risk. When will advocates start realizing that?

    • Jennie Spotila says:

      First of all, I respect your passion and decision on which way to go. I wish we had even more people who would throw themselves into advocacy.

      Second, I agree that it would be powerful if the 35 would continue to advocate. Why aren’t they? Maybe they didn’t bargain on being in the middle of politics. I don’t know.

      I agree that things aren’t written in stone. But one reason I worked so hard in opposition to the proposal was because I knew the task would get much much more difficult if and when a contract was signed. And it did.

      I am really worried about despair in the patient community. Whether it ends in suicide or just giving up hope, an individual can only take so much.

  5. Shelley Carlson says:

    This is such an old story it makes me even more tired. How many times over the last 23 years have we heard that something is being decided about us without input of experts in the field, or patient consultation? These people have an outcome in mind already, and are going through the motions. We will not stop it and we will not influence it. It disgusts me and the stress hurts.

  6. Shelley Carlson says:

    Sorry – I meant 33 years!

  7. Christian Godbout says:

    Jennie – In the midst of this intense conflict, you truly are good at going for the constructive solutions. We have to build something from here, and remaining in perpetual antagonism does not move us forward. We need to synthesize the opposing forces. Applied Hegelian dialectics! Such seems your stance. Other advocates would just refuse to give up, – no way! no IOM! no compromise! We’ve been harmed enough all these years!

    And they are right in my view in thinking this way… but what if their “action” was wrong – I don’t mean morally wrong, it is downright morally right! but strategically wrong. You won’t beat the system, you have to work with it, or else it will continue on its own and things will turn out even worse.
    Wisdom over convictions.

    Or …perhaps we CAN beat the system!… The rub is, WE DON’T KNOW!! That’s tough, not knowing if acting accordingly to your innermost convictions will be constructive. That is tough. For that, it would help to have a guiding feedback of “the experts”.

    I have a trivial explanation for their “silence”, it is not even a silence: I would say they are so immersed in their scientific work that they barely have time to wonder about politics. Like artists who are just doing their thing in relative obliviousness of the outside world. If I’m wrong… then so are they!

    What a turmoil. And Jennie, you are a tremendous diplomat. “Please understand that we have an issue to solve, people!”

  8. Ess says:

    I took the time to read the link given by Erik Johnson in #3 above–written by Byron Hyde, MD.

    A ‘must-read’–and attests to a CHRONIC DEBACLE of chronic debililtating ME/CFS that is in its next phase of injustice with the IOM.

  9. Ess says:

    Christine–I can relate to what you have to say on many points–and hear you with ‘I need action now, with the CCC and not in 5 years’. ‘They’ want to drag this out ad nauseam; we have been waiting ‘hopeful’ for years and decades; UNJUST. Take good care!!. @Christine

  10. Ecoclimber says:

    “I heard from a highly placed source at HHS that the government will not accept a definition without their own thorough assessment”

    Did not Secretary Sebelius state that it’s not the role of HHS to define patient criteria?

    Reread your blog post on TUST

    They began the communitcation process with obfuscation, denial, lying, deception and secrecy! Why? Define the reasoning behind it? If this is the atmosphere in which they operate, it would be ludricous to believe the rest of the process would be transparent and above board.

    The mere fact they didn’t have the decency to reply or even acknowledge the Open Letter by our leading ME/CFS researchers and clinicians demonstrates the disdain and utter contempt toward this patient community.

    Then, the question goes to why didn’t they respond to assure our researchers of the process? My speculation is that in order for HSS to respond, they would had to offer credence in the process which they were not willing to express because of possible liability and conflict of interest issues? They were not willing to go on record but decided to approach in a secret behind the scene ploy to communicate with the researchers through the arm of the CAA.

    Under the FOIA, HSS should be required to disclose and release all communication in the form of emails, policy directives between HSS and the IOM including all interoffice communications within HHS that involved the decision making process to create a patient criteria with the IOM?

    Under sequester, with all exempt employees furloughed, it is puzzling that they can they be driving this process at such warp speed?

  11. Thank you, Jennie, for a thoughtful and courageous statement. My views are not far from yours, although they may not be reflected as clearly in my simple statement in September. One difference may be that I have a cautiously growing confidence that [slow] change is occurring at the federal levels regarding this illness complex. I have traveled an exhausting path in the last 2 decades that includes trudging through projects with the CFSAC, CDC (from Reeves to Unger), FDA (On the Hemispherx side of the table at the hearing) and Social Security—-all while actively involved in patient care, non-profit advocacy (OFFER, CAA), education (IACFSME, OFFER), and research (XMRV, NIH/XMRV, CFI, CDC, Lights, Pfizer, Lilly, Forest, Hemispherx, etc). I hope all of our community will unite to paddle strongly and straight, catch the current, and fly.

  12. Sandra says:

    Even as the IOM contract is going forward, let the petition signing, etc. continue. It is a way of giving them our input even before their first attempt to consult us. Patients from around the world are saying that we are watching this closely and we are no longer willing to put up with the “false illness” beliefs of those in authority. Let this put pressure upon them that they had better get this right.

  13. Ess says:

    P.S. to my comment above #10–What Dr. Byron Hyde describes as the history of this ‘Chronic Debacle’ enacted around ME/CFS surely rings true evidenced all along the way finding us where we are at today. WHERE is the accountability ??!!! for what this has done to all of our lives!!! What is the consequence for those ‘in power’ who have misrepresented this horrid disease . . . ?? It is beyond criminal to misrepresent and allow such a disease to STEAL our lives away AND SPREAD like it is GLOBALLY.

    Unfortunately, and tragically for us, medicine is not immune to the politics and individual egos within big business–then again–big business and politics are involved in our health care. In health care there is an ultimate goal of ‘saving (our) lives’ . . . bringing us back to good health–‘do no harm’–or so we logically thought AND trusted.

    The separation and definitions made of ME/CFS in Dr. Hyde’s paper are interesting–however, may not necessarily be helpful to many–seemingly throwing a separated category of ‘CFS’ into ‘more vagueness’–when that is not what we need at all. Surely with such a horrid disease going on for years (and decades) leaving us chronically ill housebound and/or bed/couchbound–if a ‘noted’ serious disease were underlying ME/CFS this would have been identified by now.

    Let’s keep signing that petition–watching and speaking up from around the world!

  14. Christian Godbout says:

    Well, since no one has done it has thusfar, I really wish to thank Dr Bateman for having posted here. I am in desperate need to understand what are the dedicated ME experts thinking and doing at this very time, as yet another page is being written as we speak about the history of this illness, the outcome of which is generating anxiety everywhere.

    I would like to add this: I think that the “experts’ letter” to the HHS has generated a perception or fantasy that we have a united group of 35 experts paddling in the same direction and “watching over us”, – of which Dr Bateman would now be the only dissident. It can’t be…

    Dr Bateman, how I would love to hear a word about your stance in relation to how your fellow colleagues are reacting to it. What’s going on up there on Mount Olympus? 34 against one? It can’t be…Pondering and deliberating? Chaos?

    Secrecy has been everywhere in this ordeal, and it would really help the “cause” if the true caring doctors spoke ever more to guide us. If you wish that the myriads of ME sufferers unite and back you up, please let us in on further details as to where the “35” stand. And we’ll be there, you can bet on it…

  15. Gabby Klein says:

    Jennie, I respectfully disagree with you. I will choose the paddle from the other side and I will tell you why. My decision is based on the facts in front of us the history behind them.

    The issues are:

    HHS,IOM and the contract between them. If we look at the actions, past and present, of HHS towards ME/CFS (not their words or promises), there is no reason for anyone to be optimistic. They have constantly acted by either ignoring that this is a real disease or worse try to picture us as malingerers. Just look at they funding for us in the past 20 years, their insistence on keeping the CDC toolkit, Unger’s refusal for 2 day exercise testing..etc

    Take the IOM. If I look at their past actions, the only experience I can go on is what they have recently done and are currently failing with GWI. As far as the contract that was signed, you yourself have so well pointed out all the failings from the second that they announced the sole solicitation to the unveiling of their work statement.
    No matter where I look, it is all lies, concealment, abuse.

    I am also keenly aware of the gravity of the situation. I know that no one can predict at this juncture in certainty, if the contract is going to proceed, what the outcome will be. But, it would take a miracle, in my mind, for a better outcome than the CCC. I am a believer in miracles but, not in this case.

    I will fight this with everything I have. If the process will continue, it will be against my uproar.

    I wish I can join your hand and that we can all be paddling together but, I’m afraid the stakes are too high.

    Ps- As far as those who are asking why the 35 have been silent since sending their letter? I would think the more appropriate question would be why is HHS silent and never replied?

    • Jennie Spotila says:

      Gabby, I appreciate your explanation, and I’m glad that you are staying in the fight. I sincerely hope that our worst fears do not come to pass. I respect you, and the position you are taking. You are a terrific advocate.

  16. Sue Sullibert says:

    From the PR forum:


    Well, in fact it only took 10 minutes online to track down the nefarious connection between the Institute of Medicine (IOM) and the disability insurance industry — an industry which is always trying to redefine ME/CFS as an “all in the mind” condition, in order to avoid expensive disability payments to very ill ME/CFS patients.

    This nefarious connection comes in the form of a Mr Leonard D. Schaeffer, founding chairman and CEO of WellPoint, a health insurance company who provide…. yes you guessed it, disability insurance.

    Leonard D. Schaeffer is also a member of the Institute of Medicine. Ref: here.

    More than that, the IOM received a $2 million gift to establish the Leonard D. Schaeffer Fund and create an endowed executive officer position in IOM. Ref: here.

    In other words, through this $2 million gift, Mr Schaeffer controls the executive officer of IOM.

    The current “Leonard D. Schaeffer Executive Officer” of the IOM is Mr Clyde J. Behney, who you can see on this page of the IOM website.

    Leonard D. Schaeffer is thus holding the puppet strings of this and any future executive officer of the IOM. So the IOM is significantly controlled by the insurance industry.

    • Jennie Spotila says:

      I let this comment through moderation, but some of the links didn’t come through. I think it’s important to examine the source material with allegations like these. I have not had time to do as much reading as I would like on this, so I’ll share what I found below and caution everyone that they should look for themselves before assuming these allegations are true.

      The link to Leonard Schaeffer’s bio is here: http://www.forbes.com/profile/leonard-schaeffer/

      You will see that Schaeffer was Chairman and CEO of Wellpoint from 1992 to Nov 2004. From Nov 2004 to Nov 2005, he was Chairman (not CEO) of Wellpoint Inc (created after the merger with Anthem.) Schaeffer left Wellpoint in 2005. In 2008, he joined the faculty of USC.

      I haven’t found a current membership list of the IOM, but the way members are elected is described here: http://www.iom.edu/About-IOM/Membership/Election-of-Members.aspx

      Schaeffer did make a $2 mill gift to IOM to endow an executive officer position: http://www.iom.edu/About-IOM/Support-IOM/Recent-Gifts.aspx

      That does not mean Schaeffer controls the position. Here is the description from the gift announcement: “The Leonard D. Schaeffer Fund will be a source of discretionary money to further IOM’s mission of providing the nation with sound advice grounded in scientific evidence, to improve people’s health and well-being. The money may be used to support core expenses and program activities, such as the convening of studies, production of workshops, and communication of IOM’s findings and recommendations.”

      Here is the bio of Clyde Behney, who currently holds the executive officer position, and it includes a description of his duties:

      I think we need to know more about how the endowment works, and the conflict of interest policies governing IOM members. Endowed chairs at universities involve a donor giving a pot of money to the university, and the university has to use that money to fund a faculty position. The faculty member might also get discretionary money for research. While the donor certainly gets attention and feels important, the donor retains no control over that money. I don’t know if it works the same at the IOM.

  17. Christian Godbout says:

    Gabby – Indeed the silence from the HHS is most frustrating. But deploring this silence is not going to change things. Asking why are they not responding is not going to change things. I would stay acutely focused on the forces that can influence the course of things and that we ourselves can influence, and right now I believe it is by having the “experts” reiterate and insist on their position. We can be heard by them way more than we can be heard by the HHS.
    The “experts” are the mediators between the sufferers and the government, and we have to galvanize them to take yet a second stand. Their “letter” was deemed a historic move in the history of this illness. ONE LETTER.
    I would not protect their silence by saying that the ball is now in the HHS’ court. We have everything to loose with this attitude. Let’s instead insist on our position until the very last second, we have nothing to loose and hopefully something to gain by doing so.

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  19. Andrew Bokelman says:

    I’m not sure what to do, but here are the thoughts that I’m having right now.

    1. I don’t think the experts are remiss in not doing anything more. They made their point. All they have to do now to continue making their point is to keep using the CCC.

    2. No matter what, I think we should keep trying to get this canceled. Even if the process begins.

    3. I don’t think showing up there and testifying is contradictory to asking that it be canceled. We are protesting this. So why not try to advocate there, even if it means being on the panel or showing up to speak in favor of the CCC. After all is said and done, we can still all use the CCC.

    4. I think putting a positive spin on this meeting is unacceptable. It is not a wonderful opportunity. It is not a positive step toward cooperation. It was launched via an HHS lie about what the CFSAC asked for. It is being overseen by the same folks who shafted GWS sufferers. There is nothing good about this.

    5. If any of you go, please don’t inadvertently sell us out. Please don’t endorse anything other than the CCC, or anything that the experts don’t approve via email vote. And no positive spins on bad results, such as saying “It’s a start” If it is not adequate, say so. And if it is horrible, say so. Detente should not consist of patting people on the back while they feed us poison.

  20. Ess says:

    Very loud and very clear, Andrew. We need the clarity. We do not need a ‘start’–that is ridiculous–this ‘start’ has been STEERED backwards and downhill to our detriment for YEARS/DECADES. Let us not get sucked into more of the same!!! CCC !!!!! We know what that is!!

  21. Darlene Prestwich says:

    “HHS will want to get its hands on any definition before accepting it, and they will not accept CCC as is. So even if we get the contract rescinded, we will be back where we started except everyone on both sides will be even more pissed off.”

    As I read through all the arguments and opinions around this issue the above statement of Jennie’s seems to be accurate and would be a disaster for our community. Where do you go from there? I also think that it can’t help but work in our favor that there are so many people passionate about this whole debacle, (no matter which way we are are paddling,) surely that will have a positive influence in our behalf. We do intend to be heard! Thanks Dr. Bateman for stepping up with a clear statement of opinion/intent. If this study moves forward (and that looks unavoidable) we will need experts and advocates willing to come to the table determined not to sell us out. Can the CCC be improved on? It is ten years old. Will it be? That’s the million dollar question. I hope so. Maybe naively so, but it’s a hope all the same.

  22. Justin Reilly says:

    @Gabby Klein Well said!!

  23. Justin Reilly says:

    @Andrew Bokelman
    I agree 110%. Thank you, Andrew!

  24. Justin Reilly says:

    @Darlene Prestwich
    the chance that this will end up well is so remote, it is not worth considering. That does not mean we shouldn’t try to mitigate the damage by participating. However, the more important imperative is to resist this farce of a study; this is just more victimization of ME patients and warping of the science. Please speak out loudly against the contract, everyone!!

  25. Justin Reilly says:

    @Jennie Spotila
    The head of one of the Gulf War Illness panels at IoM, I think it is the current one on redefining GWI, said IoM has never, in memory, been asked to define or redefine and illness.
    I think it’s fine to give imput to the study, but please also continue to oppose it!

  26. Jane L. says:

    I have kept up with Jennie’s excellent blog coverage of this issue, but have not done enough of my own information gathering, so do not feel as qualified to comment as others have on which paddle, if forced to choose: unqualified opposition to the contract, or giving it a chance with as much vigilance as humanly possible (though, admittedly, I am not sure how and to what extent such vigilance can be implemented by those who are not included in the process).

    Logic counsels the former, but my own exasperation with the status quo (CCC exists and is used by the tiny handful of knowledgeable experts “in the know” but is not the official CDC/NIH case definition), and (wary, jaded, and yes, likely naive) hope for progress on the case definition issue (seemingly endless talk but zero official government action year after year after year) in the foreseeable future edges me towards the latter. I totally rationally understand the opposite stance, though, and think there’s lots of merit in opposing it as a way to strongly convey to NIH and IOM that they really can’t screw this up.

    Separately, I will add that the aspect that bothers me the most at the gut level is the lack of reliable information about IOM as a trustworthy institution given the GWI precedent. Again, I don’t have access to the facts I would need to make my own educated judgment one way or the other, but I have personally experienced the brunt of the nefariousness of the disability insurance industry’s focused efforts to de-legitimize ME/CFS, and it is astounding. I just really, really hope that that lobby has absolutely zero influence on IOM as a whole, or on any aspect of its work on the contract.

  27. Anne says:

    I haven’t read all the comments in this thread, but I wanted to post something I’ve been thinking of.

    Before I got ill I was working in the field of environmental issues (decrease of biodiversity, problematic chemicals, climate change, etc). This is a field full of passionate advocates and NGOs doing great work. Different advocates/NGOs have different approaches, but there seemed to be general agreement on one thing: There is a NEED for different types of advocates.

    One type is the “angry watch-dog” NGO, who raises issues, yells at the government and corporations, gets media interested. This type pushes the whole field forward, in a direct -sometimes bordering on aggressive- way.

    Another type is the “reasonable dialogue partner” advocate/NGO. This type is more directed towards dialogue and reasoning with government/corporations. Acts in a more polite manner, building relationships, keeping communication channels open.

    These two types of advocates can share the same goal, but go about it in different ways. Both can be needed for change. The “angry watch-dog” gets the field proper attention and get the people in power to realize they need to act. Once that is done, when the government/corporations want to act, they usually wish to start with dialogue, but often feel they need a different type of advocate to talk to than the one who was just yelling at them on TV. The “reasonable dialogue partner” steps in.

    I’ve seen this dynamic work in a number of environmental issues. (Think of Greenpeace, for example, as an angry watch-dog, while other NGOs take the dialogue role.)

    My point is: Maybe it’s not so bad to have different kinds of advocates taking different roles?

    Jennie and other, would love to hear your thoughts on this.

    • Jennie Spotila says:

      Anne, I agree with you 100%. We need both. We need people raising hell about the IOM study, but we also need people trying to make it as successful for us as possible. We mitigate the risks of each path by pursuing both at once. This is what HIV/AIDS advocates did so well. They did both.

      This is what I was trying, and perhaps failing, to say. Coordinate both paddles, rather than bashing each other over the head insisting our paddle should be the only one.

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    • Jennie Spotila says:

      This post contains false allegations about me. I did not post my opinion as a shill for the CFIDS Association. I disagree with some of the things the Association has said publicly in recent weeks. My blog posts are my opinions and mine alone.

      Edited to clarify: the accusations were made in one of the posts that links back to this one. I didn’t mean to suggest otherwise.

  29. Gabby Klein says:

    Jennie – I don’t think that you failed in your presentation. I think that you made and argued your point very effectively and I get it.

    I don’t believe that bashing each other will get us anywhere except take us some steps back and weaken our potential strength.

    I appreciate how you allow and are respectful for all our voices here. We have different tactics but, most of us are aiming for the same direction.

  30. Darlene Prestwich says:

    So, hopefully we can pull off more of a good-cop, bad-cop thing instead of bashing each other with paddles. I hardly have enough energy to paddle as it is, and am glad for anyone willing to advocate.

  31. Ecoclimber says:

    I don’t believe you are a shill for the CFIDS assoc. and have done an excellent job in communicating with the patient community your thoughts and analyses! It probably comes with the territory after so many false and broken promises, lies and behind the scenes manuvering to push this illness into a psycho/social disorder. This patient community has been blindsided ( Reeves, sqaundering of funds, xmrv) that the level of trust is not there. So similar to Dr. Vernon association with Reeves and the CDC, your association with CFIDS given their history of non-performance is natually called into question.

    You did state that you had other information about the CFIDS and IOM that you are not willing to disclose. My question to you is why not?

    Also Pandora has issues a a Statement on the IOM Committee’s Request for nominations and what really went on behind the scenes in Washington.

    It can be read on their site or at: https://tinyurl.com/k78fahn

    What concerns me is that Gulf War Veterans did all the right things in following the IOM guidlines and processes, jumped through all the IOM hoops, attended the public meetings to voice their concerns but in the end they disregarded the information and came forth with the predictable psycho/social disorder criteria. Some say that the VA was the cause but tend to disagree as this was a closed meeting and the contractng party is excluded from the process.

    I will gather the evidence to rebut the VA IOM at every stage of their process.

    We do not all have to be in one canoe. We can be paddling in more than one canoe going in the same direction. As one veteran stated, one the outcome is determined, it will be hard to go back and change it.

    Also after the determination of CMI, one veteran went to the hospital to recieve treatement. The doctor had no knowledge of CMI, nor did he know how to treat it. He told the veteran that CMI is all psychosomatic anyway, the veteran left receiving no medical treatment.

    There is no statement by the IOM or HSS that once a determination is finalized, there will be a process to broacast this information to the medical and research community.

    • Jennie Spotila says:

      I’ve had dozens of conversations with multiple organizations and individuals in the last few months. In many of those conversations, the organizations or individuals asked me to keep some or all of the information confidential. I have sometimes asked the same of them. Confidentiality is sometimes a condition to get someone to talk to me at all, so I respect it when asked. I also don’t always agree with the position or action being taken by an organization or individual, but I rarely discuss that publicly either.

  32. Ess says:

    Jennie, just found this link and excerpt below–from Dr. Lucinda Bateman’s presentation–speaking to a ‘day two’ re exercise–ME/CFS.


    “This is another test with this group and a set of healthy controls, together with a retest, and it showed that it’s very difficult for chronic fatigue syndrome patients to reproduce the same amount of exercise two days in a row. That might help explain post-exertional delays. Something is damaged, or recalibrating, or recovering. There’s something going on in day two after a vigorous exercise.”

    AND this speaks loudly to what is going on in disallowing Day 2 of the exercise testing–they do NOT want the results seen.

  33. Ess says:

    I did not see the other post with the accusations. Thank you for speaking to this and for all the work you do with this site aiming for expeditious scientific answers and REAL treatment to help the ME/CFS communitiy.

  34. readyforlife says:

    Jennie, thank you for all you do!! This fight have stressed me out and laid me out flat. I go back and forth on what paddle to grab hold of. At this point I don’t think its taking sides because either way we need to fight for the right out come. And the next thing i’m “dying” to see is the list of experts the IOM has chosen.

    Bless you.

    • Jennie Spotila says:

      I completely agree!!!! We need both paddles. I’m being laid low by this work, too, which just increased my frustration. And yes, the BIG question is who will be on the provisional list of panelists. I’m very anxious to see it (and anxious about it too).

  35. Brilliant as always. Thank you.

  36. Ess says:

    As a point of interest, I wonder how many others along with me, have written a comment on the CFIDS site below as @ October 10 and are still awaiting ‘moderation’ for the comment to be posted.

    Food for thought here, I’m thinkin’. I wrote briefly right after Maxine Smith’s comment.


    Clearing the Air

    Association News, Policy Matters, Research News | 08. Oct, 2013 by Suzanne Vernon, PhD | 15 Comments

  37. Ecoclimber says:

    The bottom line after a thorough investigation. This is a needless waste of time. The outcome has already been established by precedent through the rulings of the IOM PANEL on CFS for the last 10 years. They have thoroughly examined the evidence and in each ruling on CFS has been the same. To overrule their statement of facts based on the evidence, would me that they would be require to rescind all the evidence and state of facts for each report’s conclusion.

    Would a court of law proceed in such fashion? No! Neither will they.

    Vernon has betrayed the CFS Patients and put them at extreme risk.

    Do you expect that the IOM will overrule their own 10 years of rulings on CFS?

    Ask HSS Sebelius: Do you believe that another IOM Panel on ME/CFS based on the fact that they have consistenly ruled by findings of facts over the last ten years including the latest 2013 VA IOM report, that CBT/GET are the most effective therapies for CFS and that immunotherapy and antiviral therapy are ineffective with regards to treatment?

    This is their rulings from 2001 to 2013 from all evidence considered.

    Chronic fatigue For Gulf War veterans who meet the criteria for diagnosis of
    syndrome (CFS) CFS, the committee recommends:
    • use of cognitive behavioral therapy and exercise therapies
    because they are likely to be beneficial;

    • monitoring the results of studies of the efficacy and
    effectiveness of NADH, dietary supplements,
    corticosteroids, and antidepressants other than SSRIs;

    • because immunotherapy and prolonged rest are unlikely
    to be beneficial, they should not be used as treatments;

    • SSRIs are unlikely to be beneficial and are not
    recommended unless they are used as treatment for
    persons with concurrent major depression; and

    • treatments effective for CFS should be evaluated in Gulf
    War veterans who meet the criteria for CFS.

    This is what the IOM thought about CFS and ME in January of this year in their 2013 Report on Chronic Multisymptom Illness

    (formerly Gulf War Illness). The IOM accepts without question a 2001 work by Wessely’s crony Michael Sharpe claiming ME is a “functional somatic syndrome” (psychosomatic). The IOM believes ME is just another name for CFS.

    “The common thread among the terms is that symptoms experienced by patients cannot be explained as pathologically defined, or organic, disease (Sharpe and Carson, 2001). Such syndromes as irritable bowel syndrome (IBS), chronic fatigue syndrome

    (CFS, also called myalgic encephalomyelitis), and fibromyalgia often are included in this group of unexplained illnesses, as are chronic unexplained symptoms that do not meet case definitions for IBS, CFS, fibromyalgia, and other functional somatic syndromes that have specified diagnostic criteria

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