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IOM Panelists: Balancing Act

December 13th, 2013

753625-seesaw_square_largeThere is a good deal more to discuss about the Institute of Medicine ME/CFS case definition panelists beyond their individual backgrounds (see the known and unknown panelists’ profiles). Our team has been grappling with those issues, not always achieving consensus. We hold a spectrum of opinions, and it forms an important context for providing feedback to IOM on the panel.

The Moral Question

The reasons for the ME/CFS community’s opposition to the IOM study have been extensively explored over the last three months. Part of the struggle has been over what to do about it. Some advocates believe we should contribute to the process in a constructive way by providing feedback on the panelists and input on the substantive issues. Others believe that participation in the process is not only pointless, but will actually legitimize an illegitimate process. They advocate unconditional and complete resistance to the IOM study, and state that no advocate should provide feedback on the panel. There are other views as well, and everyone is entitled to act on their views as they see fit.

Our team has mixed views on this question of involvement in the process. Several members lead organizations that have publicly stated their support for participation. Others struggled with whether to be involved in our research project, let alone in providing feedback to IOM. Obviously, given the intense investment of time and energy we have made, the ten of us believe there is value in examining the panel. Information is powerful, and one must first have that information in order to make effective use of it.

Conflicts of Interest

As I explored in a previous blog post, the IOM takes issues of conflict of interest (COI) and bias very seriously. In fact, a large portion of the panel’s first meeting will be spent discussing potential conflicts. Our team struggled with how to define COI and apply that definition to this panel.

The IOM defines a COI as “any financial or other interest . . . [that] (1) could significantly impair the individual’s objectivity or (2) could create an unfair competitive advantage for any person or organization.” In researching the panelists’ background, we looked for clear financial interests that could affect a person’s judgment on the ME/CFS case definition. For example, if a panelist had received payments from a disability insurance company, we believed that would be a clear conflict. We didn’t find anything like that.

Our team also discussed other financial interests and the potential effect on panelists. For example, many panelists receive government funding (chiefly NIH and Department of Defense), and we also found that some have received significant research or consulting fees from pharmaceutical companies. Does this funding represent a conflict of interest? Some team members believe that it does, in that a panelist would be more likely to do what the government wants because he/she feared losing future funding. The IOM policy specifically limits COI to current – not future – financial interests, but that did not reassure these team members.

The counter-argument is that if receiving NIH funding is a conflict of interest then almost all of the panelists – including the ME/CFS experts – would be disqualified. Dr. Klimas and Dr. Natelson receive significant NIH and/or DoD funding for their work. One team member felt that in their cases, the interests of their patients would outweigh the government’s potential influence through funding, but others were concerned about creating these sorts of exemptions.

How far does this go? If having an ME/CFS clinical practice is such a strong influence, what of panelists like Dr. Bateman or Dr. Lerner? They do not receive NIH funding as principal investigators (although they may be co-investigators), but do they have a conflict of interest because they earn a living from ME/CFS patients? And what about the influence of CDC? Dr. Bateman, Dr. Klimas and Dr. Natelson are all participating in the CDC’s multisite study. Dr. Bateman, Dr. Natelson and Dr. Rowe have recently appeared in the CDC’s physician education programs. Furthermore, there are two panelists who will be personally and directly affected by the panel’s recommendations. Dr. Chu is a patient herself and Dr. Davis’s son is very ill. Any new case definition will have a direct impact on their lives. Does that mean they have a conflict of interest?

The challenge in assessing conflict of interest is to apply the definition evenly in all cases. If NIH funding is a COI, then everyone with such funding is out. If treating ME/CFS patients is a powerful influence on a panelist, then all those doctors are out. After much discussion, the majority of the team believed that things like NIH funding and clinical practice were not conflicts of interest. In addition, the IOM policy specifically allows panelists with COI to serve if they have unique and necessary qualifications. We believe that the points of view of patients are critical to this panel’s work, and therefore patient or family status should not be a bar to service.

Committee Balance

Selecting the IOM panel is not just a matter of individual expertise, but also the overall balance of viewpoints. Do the panelists’ views balance each other out, with no particular view dominating? Will they collectively be able to discuss and consider the full spectrum of issues?

The IOM Statement of Work listed the desired committee expertise. How well does this panel address that?

  • pathophysiology, spectrum of disease, and clinical care of ME/CFS (Bateman, Chu, Keller, Klimas, Lerner, Natelson, Rowe)
  • neurology (Natelson, and potentially Shelanski)
  • immunology (Diamond, Klimas, Natelson)
  • pain (Cleeland)
  • rheumatology (Diamond)
  • infectious disease (Lerner)
  • cardiology (no cardiologists, although Keller, Lerner, and Rowe have relevant experience)
  • endocrinology (none)
  • primary care, nursing, and other healthcare fields (Ganiats, Bateman, Alegria)
  • health education (Bateman, Ganiats, Klimas, Rowe)
  • and the patient/family perspective (Bateman, Chu, Davis, Lerner)

One member has experience in systematic reviews (Mulrow), and another has extensive experience in outcomes measures (Cleeland). Two or three may potentially take a behavioral view of ME/CFS (Alegria, Ganiats and Mulrow), but at least six can speak directly to pathophysiology (Bateman, Chu, Klimas, Lerner, Natelson and Rowe). Six panelists have co-authored previous ME/CFS definitions and/or adopted a public position in support of CCC (Bateman, Chu, Keller, Klimas, Lerner, and Natelson), and five currently treat ME/CFS patients (Bateman, Klimas, Lerner, Natelson and Rowe). At least two panelists appear to have no prior knowledge of ME/CFS (Clayton and Shelanski).

Some team members do not want any psychologists on the panel regardless of their backgrounds, and a few felt that the panel should be made up completely of ME/CFS experts. Others felt that bringing in non-ME/CFS experts has advantages. All of us are concerned about the views of Alegria, Ganiats, and Mulrow. The absence of a cardiologist and endocrinologist are unfortunate, but hopefully at least part of that angle can be covered by the ME/CFS experts.

Overall, the committee membership seems fairly balanced. There is diversity of professional experience and of ME/CFS specific experience. While all of us would have liked to have seen more ME/CFS specialists, it is important to note that we have confidence that the specialists on the panel are fully capable of conveying their points of view. We don’t expect that Drs. Bateman, Chu, Keller, Klimas, Lerner, Natelson or Rowe are likely to be bullied; indeed, many of us have personally witnessed their willingness to speak their minds.

Next Steps

The IOM is accepting feedback on the provisional panel until December 23rd. Many, if not all ten of us, hope to provide such feedback. We are looking more carefully into several of the panelists, and will share our assessment in a future post.

 

Acknowledgements: This post was a group effort, and would not have been possible without the assistance and participation of Lori Chapo-Kroger, Claudia Goodell, Chris Heppner, Denise Lopez-Majano, Mike Munoz, Darlene Prestwich, Tamara Staples, WillowJ, and one advocate who wished to remain anonymous.

 

  1. floydguy
    December 13th, 2013 at 13:09 | #1

    I would suggest that ignorance of the subject matter is a gross conflict of interest. This is a complex subject politically and medically. Not having direct experience in either area significantly impairs anyone (no matter how brilliant) from making objective, substantive recommendations. Such ignorance advances the ridiculous CDC/HHS position that this condition is defined by medically unexplained symptoms, tiredness and is best treated by anti-depressants, GET and CBT.

  2. AJ
    December 13th, 2013 at 13:22 | #2

    I was wondering whether psychologists/psychiatrists would have a seat on a panel about a disease like MS, cancer or ALS.

    • Jennie Spotila
      December 13th, 2013 at 13:57 | #3

      Love this point, AJ. I’ll see if a team member has time to look into it.

  3. Ess
    December 13th, 2013 at 13:53 | #4

    Thank you to Jennie and the group of people listed above for all the work you have done. You are right; knowledge is power!

    No matter if there are ‘some’ ME/CFS experts on the panel–they will be GOVERNED/RULED/OVER RULED by the ‘set-out’ Task of Work.

    CRUCIAL information the experts have to contribute, therefore, will not meet the criteria to be considered. Their hands are TIED from the get-go.

  4. Hermes
    December 13th, 2013 at 14:01 | #5

    ME and CFS are illnesses which are highly stigmatised in the medical community in the USA and internationally. There is a psychiatric stigma attached to the illness. The press, the media, the medical newsletters, some medical journals and medical based social networks and clubs and circles have fuelled this stigma. Many doctors, including independent doctors have been indoctrinated to believe that ME (CFS) is a psychiatric or psychological illness. All of the non experts on the panel have been affected by this stigma and prejudice against ME and CFS patients. Thus we are outnumbered 8 to 7 on the panel. The actual number in the end may be 9 to 6 as at least 1 member can be expected to waver or become vulnerable to pressure or manipulation.

    While conflicts of interest raise concerns about the integrity of the IOM and NIH, it is the existing stigma and prejudice around ME and CFS which has already influenced IOM panel members which is most threatening. And this will influence their mindsets, their thinking, and the pathway they will choose in research analysis. Its highly probable that all non experts may use their time on the panel to research those areas which reinforce their prejudices and stigma. Also they may even use it as fallback position if the other research areas are percieved to be unconvincing.

    The IOM must move to identify existing prejudices, bias and stigma against ME and CFS among all panel members, with particular attention paid to non experts on the panel.

    All closed and secret meetings of the panel must be made public in order to comply with law. Transparency, accountability and fair procedure are still part of Federal laws.

    The IOM should be asked to replace all non experts with the following experts – Dr. Dan Peterson, Dr. Paul Cheney, Dr. Derek Enlander, Dr. Chia, Dr. Conley, Dr. Sarah Myhill, Dr. De Meirleir. This would enable a thorough, honest, unbiased, objective, independent study to be conducted at the IOM.

  5. AJ
    December 13th, 2013 at 15:45 | #6

    No cardiologist, no endocrinologist, no gastro-enterologist. But 3 psychs?

    • Jennie Spotila
      December 13th, 2013 at 21:07 | #7

      The lack of cardio and endo is huge. We took up your question of how many psychs are on panels for other diseases, and I’ll include some of that info in the next post. Thanks for raising it!

  6. Lars
    December 13th, 2013 at 17:04 | #8

    Jen, You and the others are all heroes for standing up for patients. I hope You can convince the 8 ME experts to publicly promise the patient community they will walk out if the process is “rigged”!

    • Jennie Spotila
      December 13th, 2013 at 21:09 | #9

      Thanks, Lars. I certainly hope we will hear about it if it is rigged!

  7. Erik Johnson
    December 13th, 2013 at 17:10 | #10

    The CCC is only RESTORING the evidence that the CDC omitted when they were drawing up the original Holmes CFS definition.
    From a purely scientific perspective, the DHHS has no right to question or deny utilization of the CCC, as this evidence should NEVER have been ignored in the first place.
    At Simmaron Science Day, Dr Peterson spoke about the IOM contract and said “We’ll have to see how they do”. Obviously a reference to the fact that he is sticking to the original database, just as he always has, and if the IOM definition fails to meet that standard, this is just another failure of the DHHS to bring their standards up to a level of scientific acceptability.

  8. DZ
    December 13th, 2013 at 17:38 | #11

    What about the inherent bias created for the IOM itself, and IOM members on the panel, given the inconsistency and loss of credibility the very recent IOM report on “Chronic Multisymptom Illness”, which leans heavily on a pseudopsychological conception of and treatment regime for “CFS/ME”, would face if a new IOM panel should agree that that conception and treatment approach is wrong?

    • Jennie Spotila
      December 13th, 2013 at 21:11 | #12

      A number of people have raised that issue with IOM, DZ. Their response has been that IOM as an institution does not have a COI from report to report. A different panel can reach a different conclusion, and there can be a lot of reasons for that.

  9. December 14th, 2013 at 03:21 | #13

    If one of the members on the panel suggested any type of exercise treatment (brutal treatment 8 hrs intense exercise in house with Dr. -with no pain killers ) to an ME/CFS patient in a wheelchair or denial of true ME/CFS symptoms from patients… would the public and/or advocates involved in this illness want to know? Who that physician is? Or IVIG treatment but scared to document it? OR you are told your son has more than one illness (movement disorder) and I only do one illness? What if this person is currently on the panel. Comments about anxiety and depression………oppositional behavior .Or rude comments in record that show bias against ME/CFS diagnosis? Or opinions that border on cardiology expertise but is not a cardiologist and son now has a rare heart conduction block that is not explained? After years of medical neglect? Is that bias? It -this issue-has been reported in past to large CFS advocacy agency…..one who holds close ties with this person. All well documented. Rude comments in this persons clinical note were used against us in DSS case. Treatment -intense exercise with a specialist in Pittsburg. I was told by this arrogant physician to -Stay off the internet and that parents of children with this illness just want attention. He gets a lot of emails from moms with children with this illness…….what he said about them was inappropriate to say the least. Is he disguised as a helper? We have to make sure appropriate people are fighting for our cause not against us. Many times a person’s credentials cloud our judgment. He may not be a psychologist or psychiatrist but I believe his hidden views relating to true ME/CFS patients will hamper any progress in this illness. Enough said. This illness is about a lot more than blood pressure issues and we can move toward a cure faster if we acknowledge that it is more than just POTS. And anyone that lives it knows that. We are fighting ourselves because many involved in advocacy are profiting in some way by denying our symptoms and medical facts truly exist.

  10. December 14th, 2013 at 03:37 | #14

    I believe the POTS professionals across the US (Mayo and others ) are up to their own set of games as it relates to this illness. I am uncertain what they are covering but it is hampering any progress in ME/CFS by blaming deconditioning on ME/CFS/and POTS and their goals are the same -to exercise it away. My son tried that and now has a heart conduction block to show for it. We were told he has POTS but he really doesn’t according to his current cardiologist ………………he definitely has a rare heart conduction block LBBB with RAD. What else are they hiding? And is POTS the lie patients are told and the next step/hurdle in the games we must dodge in order to get answers?

  11. AJ
    December 14th, 2013 at 11:18 | #15

    This would definitely be a great concern to me. @Lisa Baldwin, BSW

  12. Ess
    December 14th, 2013 at 13:59 | #16

    @Lisa Baldwin, BSW This information needs to be EXPOSED!! Thank you for speaking up, Lisa!!

  13. Billie Moore
    December 14th, 2013 at 14:44 | #17

    It would add to the wealth of information that your committee and you have supplied, Jennie, if you would set out some guidelines in the next week for responding to the IOM regarding these panelists. It would be much more powerful if many advocates and patients commented on the positives and negatives of this selection of people than if only those on your committee commented. This is supposed to be a provisional group. Would they really change anyone if a number of people wrote in to say we are unalterably opposed to anyone with a psychological background and insist on having a cardiologist, gastroenterologist, and endocrinologist, all experts in ME/CFS, on the panel? Maybe so!

    However,…I heartily disagree with the second sentence below, from your commentary:

    “All of us are concerned about the views of Alegria, Ganiats, and Mulrow. The absence of a cardiologist and endocrinologist are unfortunate, but hopefully at least part of that angle can be covered by the ME/CFS experts.

    “Overall, the committee membership seems fairly balanced. There is diversity of professional experience and of ME/CFS specific experience.”

    If I had the capability of highlighting, I would certainly highlight the sentence beginning with “Overall….” This committee is not nearly balanced enough, for the reasons cited immediately preceding that.

    If we tell the IOM that the committee seems fairly balanced, then we are giving our approval of it as it stands. We CANNOT do that. Because what will be the IOM response if we get a dreadful, or incomplete, definition? “Why didn’t you say something about the committee before we started?” We need to go on record before it gets going that we oppose the committee as it stands because it does not have nearly enough people on the committee who are ME/CFS experts, and as a result, we do not have faith that those on the committee will be able to convince the majority that the definition is incomplete/wrong/harmful.
    By taking this position, and forwarding that position on to the IOM, it greatly weakens any chance we have of having some of these current members removed and better ones assigned in their places. By our saying – in great numbers, I hope – that we OPPOSE the inclusion of non-ME/CFS experts and recommend some people who would be much more qualified, we have a small possibility of actually seeing one or two changes in the committee membership.

    This definition process is so incredibly important to the future of those with this disease, worldwide, that we must seize every opportunity to make a difference in how it comes out.

    Thank you for the work being done by your group.

    Billie Moore

    • Jennie Spotila
      December 14th, 2013 at 18:25 | #18

      I agree with you that advocates need to provide feedback. Our team is working on this right now! The next post should include info on how to provide feedback, as well as our own opinions about feedback.

  14. Mary Dimmock
    December 14th, 2013 at 20:30 | #19

    HHS and IOM have said alot about the need for balance across a diverse range of views and expertise. That may be appropriate for typical IOM studies. But this isnt a typical IOM study. By its own admission, IOM has little expertise in developing diagnostic criteria, let alone criteria for a misunderstood disease. Instead of looking for “balance”, I think we need to be asking whether the panel is “appropriate” for the task at hand.

    This panel only has 7 out of 15 participants who understands ME. It has multiple psychiatrists. One of the panelists was a coauthor on a paper that claimed that three or more concurrent somatic symptoms predicted psychopathology.

    Based on HHS statements, we have to conclude that HHS intends these criteria to describe the broad set of CFS conditions, leaving ME as a subgroup. For that purpose, this panel might be appropriate.

    But that’s what HHS wants, not what patients want or need. None of us want to end up with criteria that continue to lump ME in with the broader set of conditions that meet CFS criteria.

    So we need to ask if this panel is the appropriate one to develop criteria specific to the disease described by CCC? Will the panel have sufficient expertise? Will it have the historical and political context to make sense of the evidence that it will be reviewing? Will it represent the range of the viewpoints that exist within our experts?

    Personally, I dont think this panel is appropriate for the task at hand. There are too many non-experts and too few experts, critical expertise is missing, the number of psychiatrists is too high and I am very disturbed by a panelist having the viewpoint that multiple somatic symptoms indicates psychopathology.

  15. Ess
    December 15th, 2013 at 00:46 | #20

    Yes, I agree fully with what you are saying, Mary; summing it all up in your last paragraph–this panel isn’t appropriate for the task at hand with too many non-experts and too few experts–critical expertise is missing.

    NOR is the IoM contract appropriate; the timing of such a contract and composition of the panel is extremely ‘suspect.’ It makes NO good sense, and offers SIGNIFICANT insight as to the HHS’ agenda.

    TOTAL DISregard is given to the ME/CFS EXPERTS calling for cancellation of the IoM contract and adoption of CCC to move forward in this disease. This is UNbelievable. This defies LOGIC and INTELLIGENCE!!

    Psychiatrists and the mindset of psychopathology abound within this panel.

    While that may be fine for mental illness–we are dealing with a serious life-altering debilitating never-ending BIOLOGICAL disease in ME/CFS–that ‘some powerful forces’ ‘obviously’ WANT labelled as psychiatric (much easier and cost effective to say that we are all NUTS–all 17 million of us world-wide . . .)–and that is EXACTLY why the IOM panel is STACKED this way. WHY else would that be?!!!

    A PSYCHIATRIC definition is the targeted outcome of the IOM contract.

    YET, at the same time, science is advancing on the BIOLOGICAL markers of this disease . . . Is this a race to see if IoM can BURY ME/CFS in psychiatry ?

    I am with the ME/CFS EXPERTS and RESEARCHERS–ADOPT the CCC and CANCEL the IOM!

  16. Alex Young aka alex3619
    December 15th, 2013 at 00:56 | #21

    http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx

    STANDARD 3
    Guideline development group composition
    3.1 The GDG should be multidisciplinary and balanced, comprising a variety of methodological experts and clinicians, and populations expected to be affected by the CPG.
    3.2 Patient and public involvement should be facilitated by including (at least at the time of clinical question formulation and draft CPG review) a current or former patient and a patient advocate or patient/consumer organization representative in the GDG.
    3.3 Strategies to increase effective participation of patient and consumer representatives, including training in appraisal of evidence, should be adopted by GDGs.

  17. Cheryl
    December 15th, 2013 at 05:30 | #22

    @Mary Dimmock
    Thank you Mary. I am in complete agreement w/ what you wrote. This illness is far too complex for non-experts to be on this panel. Besides the much needed experience of this illness, outsiders also don’t know the politics, which have sadly clouded much of the research that might be used as evidentiary research. We all know that many “CFS/ME”, “CFS” or any of the monikers, are not always really talking about this illness. You have to dig very deep, in some cases, to see that they are not studying this illness. By the same token, many of them are labeled CFS ( at least in the states) that would be the right cohort. Understanding which researchers have used what sets of patients is important. It is not always clear, unless you are an insider.

  18. Billie Moore
    December 15th, 2013 at 12:53 | #23

    What we want is an UN-balanced panel: the vast majority being ME/CFS experts. That would be appropriate.

    I agree with Mary. I would suggest, however, that the issue at this time is not ME vs. other names. The first battle to be won (if the contract can’t be stopped) is who will be on the panel, and we need to change the current makeup. Our experts will have no trouble getting to a definition that is essentially ME, not CFS, since they already did that with the ICC.

    Look forward to getting guidelines/names/addresses/etc., to write to the IOM, Jennie. Thank you all.

    Billie

    • Jennie Spotila
      December 15th, 2013 at 13:16 | #24

      Regardless of whether or not an unbalanced panel is appropriate, it is explicitly unachievable. IOM’s written policies require membership balance. There may be political reasons to ask for it anyway, but IOM will not stack the panel with 100%, or even 80%, ME/CFS experts.

  19. Ess
    December 15th, 2013 at 15:20 | #25

    THEREIN lies a HUGE FUNDAMENTAL PROBLEM!

  20. Gabby Klein
    December 15th, 2013 at 16:25 | #26

    Jennie,

    That is exactly why so many are opposed to the venue of the IOM. I agree with you that they will never give us a panel of 80 or 100% of ME/CFS experts. Their method of executing studies might work very well for all other study subjects. The creation of clinical criteria for diseases like GWI and ME/CFS are so complicated that anyone who is not well versed in all it’s contexts, history, politics and complexities will not serve us adequately.

    For the past ten years, I have tried to explain this disease to my family doctor who is very highly skilled and respected. He has read up about it. I am his only patient with a diagnosis of ME so that he has not experienced seeing multiple patients showing the same manifestations. He still believes that this is due to stress. This is probably mainly dues to the widespread dissemination of information from the CDC promoting antidepressants, CBT and GET.

    Now this same CDC is the sponsor of this contract with the IOM. Am I to trust this process that with half of the panel being ignorant about the disease, they will understand it better than the CCC or the ICC panel?

    • Jennie Spotila
      December 15th, 2013 at 22:34 | #27

      Absolutely, Gabby. I agree that this is why so many people are still opposed, and it is one of the reasons I worked so hard to prevent the contract from going through in September.

  21. Garrett
    December 15th, 2013 at 18:02 | #28

    Thanks jennie and others for your hard work. What about exercise physiologists like snell or Stevens who understand PEM. They need to be included on the panel.

  22. Mary Dimmock
    December 15th, 2013 at 19:12 | #30

    Hi Billie

    I dont see this issue as an issue of names. The issue is what disease or range of diseases does HHS as sponsor expect these new criteria to cover – the disease that the CCC and ME-ICC describes or the range of diseases that the various CFS criteria describe. The appropriateness of the IOM panel can only be assessed in relation to the task it has been given.

  23. WillowJ
    December 15th, 2013 at 19:15 | #31

    It is my position that this venue is the wrong tool at the wrong time. As Jennie mentioned, many of these summaries are from the perspective of whether IOM is meeting its own rules (whether or not it’s an appropriate set of rules to apply in this case). Once people have information, they can then make their own value judgements and act accordingly. Our part is finding some information to start people off with (we don’t pretend to have found a complete set of information).

  24. Ecoclmber
    December 15th, 2013 at 19:46 | #32

    The elephant in the room that everyone seems to be missing is not necessarily the panel members but the ‘hidden’ restriction and limitations within the IOM process that is not viewable from the outside…those ‘secret’ deliberations.

    If there is any truth to HHS statements concerning this IOM contract, then why is HHS steadfastly refusing to release the contents of the contract, which by legal statute, they are required to comply under the FOIA!

    It is past twenty days. How much time does it take to make copies of the contract and mail them out to those who requested them under the FOIA? It just confirms the fears of the ME/CFS patient community that there is adverse information relevant to the ME/CFS community which they refuse to disclose for fear of a backlash. If there is nothing to hide, you disclose. It’s as simple as that!

    Remember, it is the IOM process as well that attached the stigma of ‘CMI’ on the Gulf War Veterans patient community!

    http://www.usatoday.com/story/nation/2013/06/26/veterans-institute-of-medicine-gulf-war-illness/2458745/

  25. Cheryl
    December 15th, 2013 at 19:53 | #33

    @Jennie Spotila
    Maybe, but it’s not logical.

  26. Ess
    December 15th, 2013 at 22:13 | #34

    @Ecoclmber Point well taken, Ecoclimber–it is not obscure–has been talked about before–definitely bears bringing up front row and center now!! Thanks!!!

  27. Ess
    December 16th, 2013 at 00:30 | #35

    @Gabby Klein ‘Stress’ is another ‘catch-all’ like ‘depression’ when there are symptoms that do not register in lab tests–ME/CFS is REAL and it is a separate entity from stress.

    I’m with you–NOTHING to trust with the HHS, IoM, CDC process.

  28. Deborah Waroff
    December 17th, 2013 at 01:33 | #36

    This is important information. It is no use to mention the person obliquely. We need to know the name. No one can protest or take other action without understanding what it is you are identifying. Please tell us more, at least in terms of references to the documented items.

  29. Deborah Waroff
    December 17th, 2013 at 01:35 | #37

    I meant the above to be in reference to Lisa Baldwin’s comment. Please Lisa, let us know where the skeletons are buried.

  30. Deborah Waroff
    December 17th, 2013 at 01:41 | #38

    Ecoclmber’s point is very important. Who will control the flow of information? In the Gulf War panel the panelists only got to look at old info on psychiatric matter. Nothing on scientific proofs, including the 60 person Congress mandated committee of 2008 that concluded physical cause.

    Also, we have no right to participate — to say, hey, you missed this important paper. Or these 20 important papers.

    • Jennie Spotila
      December 17th, 2013 at 08:04 | #39

      Actually, we do have a narrow opportunity to participate. The public is welcome to submit material to the committee at any time. That includes research papers that we fear they will miss. I encourage people to do this, even though I’m sure the ME/CFS experts on the panel are familiar with much of what we would submit. It’s important for us to speak up, and the earlier we can submit papers/reports/etc the better.

  31. Deborah Waroff
    December 17th, 2013 at 01:44 | #40

    Finally, CDC including the NICE recommendations is a great big red flag. They do not even involve a similar cohort and are based on the fraudulent PACE report. They will contribute legitimacy to the psychogenic argument — “Oh well, the British, must be right, they invented Shakespeare and Winston Churchill.”

  32. Firestormm
    December 18th, 2013 at 05:06 | #41

    Debbie, PACE was published after the NICE Guideline, but I know what you mean. I think also that PACE recruitment was based on specific criteria – I forget now which – but you can look them up.

    NICE did review existing criteria before arriving at their own – this was a role of the Clinical Guideline Group, again you can review their published information in Chapter 5 – from page 124: http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf

    They didn’t feel at the time the methodology of CCC was sufficient, but you can read it yourself, I wouldn’t rely on my recall this morning.

    Jennie,

    I was reading a newsletter thingy, from CFIDS AA, they published an update way back on 5 Dec and mentioned that two on the provisional panel had diagnoses of ME and two had close family ties with the condition: http://solvecfs.org/iom-and-the-clinical-case-definition-committee-a-case-for-hope/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+Research1st+%28Research1st%29&utm_content=Yahoo!+Mail

    Can you remind me who they might be? Only I have well and truly lost the plot and will to live! :)

    Thanks

    • Jennie Spotila
      December 18th, 2013 at 07:44 | #42

      Dr. Lerner has said he is recovered from ME/CFS. Dr. Chu is currently a patient. Dr. Davis has a son who is very ill with ME/CFS, and Dr. Bateman’s sister passed away from Non-Hodgkins lymphoma after being ill with ME/CFS for some time.

  33. Firestormm
    December 18th, 2013 at 15:22 | #43

    Thank you. And for the blogs I am only now slowly reading through and catching up.

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