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The Experts

September 24th, 2013

Developments came fast and furious last night. First, the CFIDS Association announced that it would not oppose the IOM contract, but would actively call for the IOM to choose a panel that matches the CFS Advisory Committee recommendation from October 2012. Within a few hours, CFSAC announced on its listserv that the IOM contract would go forward and provided some additional information. And then late last night, we learned that thirty-five ME/CFS experts sent an open letter to Secretary Sebelius urging her to adopt the Canadian Consensus Criteria.

This letter starts with a bang: “[W]e have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.” Many of the people who signed the letter have been using the CCC for some time, but this is the first time to my knowledge that a group of experts has come together to support adoption of CCC in writing.

The letter goes on to urge HHS to adopt the CCC as the single case definition for all Department activities, both research and clinical uses. Then the next big statement:

[W]e strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary  . . . [and] threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable. (emphasis added)

That is bold. The IOM contract has just been signed, but these experts are saying: No. I do not know what efforts the signatories will make to push this message and perhaps urge that the IOM contract be rescinded. But this is the strongest advocacy statement that we’ve seen from a group of research and clinical experts in quite some time, especially in the form of an open letter to Secretary Sebelius.

There are some big names on this letter. Ten of the signatories are current or former members of CFSAC. Four of the seven clinicians participating in CDC’s multisite study have signed on to this letter. Four are co-authors of the CCC and twelve are co-authors of the ME-International Consensus Criteria. You can see a complete list at the end of this post.

But there are also some big names missing from this letter. Three of the clinicians participating in the CDC multisite study are not listed, and other giants in the field like Dr. Anthony Komaroff have not signed. I do not know what process this group followed in drafting this consensus letter, so we cannot assume that someone not listed actually opposes this position. Perhaps more experts will sign on, now that this is public and gaining momentum.

The big question is what next? How will HHS reconcile investing in the IOM contract in the face of this open consensus letter? Will others join? Will the signatories actively advocate for the rescinding of the IOM contract? Is there sufficient consensus across the field? What position with the CFIDS Association and other organizations adopt in light of this letter? Will the IACFS/ME support this effort? (two of the signatories are on the IACFS/ME board)

The good news is that things are moving. Our experts are coming together in consensus, and speaking out. That’s fantastic! But we’re still in a pickle, aren’t we. On the one hand, HHS signed the IOM contract over the vociferous objections of many in the ME/CFS community. On the other hand, many prominent researchers have now joined together and told HHS that they should abandon the contract and move forward with the CCC. This is in line with the CFSAC October 2012 recommendation as well – achieve consensus of the experts on a case definition starting with the CCC.

The question I’m asking myself today is: IS ANYBODY LISTENING? There are so many moving parts, many at cross purposes. How do we pull it all together to move forward productively, based on the science? We cannot allow anyone to lose sight of the fact that the ultimate goal must be better research and clinical care for patients.

 

 Signatories CFSAC member CCC author ICC author CDC Multisite
Dharam Ablashi No No No No
Lucinda Bateman 2005-2010 No Yes Yes
David Bell 2003-2005 No Yes No
Gordon Broderick No No Yes No
Paul Cheney No No No No
John Chia No No Yes No
Kenny De Meirleir No Yes Yes No
Derek Enlander No No No No
Mary Ann Fletcher 2012-2016 No No No
Ronald Glaser 2007-2011 No No No
Maureen Hanson No No No No
Leonard Jason 2007-2012 No No No
Nancy Klimas 2007-2012 Yes Yes Yes
Gudrun Lange No No No No
Martin Lerner No Yes No No
Susan Levine 2010-2014 No No No
Alan Light No No Yes No
Kathleen Light No No No No
Peter Medveczky No No No No
Judy Mikovits No No Yes No
Jose Montoya No No No No
James Oleske 2005-2010 No No No
Martin Pall No No Yes No
Daniel Peterson No Yes No Yes
Richard Podell No No No Yes
Irma Rey No No No No
Chris Snell 2007-2012 No No No
Connie Sol No No No No
Staci Stevens 2003-2006 No Yes No
Rosemary Underhill No No No No
Marshall Williams No No No No
Birgitta Evengard No No No No
Sonya Marshall-Gradisnik No No Yes No
Charles Shepherd No No No No
Rosamund Vallings No No Yes No

 

  1. readyforlife
    September 24th, 2013 at 13:32 | #1

    We need to stay focused and on tract. A hard thing to do with our illness, but if we go all over the board then we will not be heard.

    The question I’m asking myself today is: IS ANYBODY LISTENING? There are so many moving parts, many at cross purposes. How do we pull it all together to move forward productively, based on the science? We cannot allow anyone to lose sight of the fact that the ultimate goal must be better research and clinical care for patients.

    AMEN!!! You take my thoughts right out of my head!! Thank you for all your hard work!! You are great writer.

  2. floydguy
    September 24th, 2013 at 14:14 | #2

    It’s continuously disappointing that the CAA does not take a stronger stand. If they do not oppose the IOM contract what is the outcome they hope for? An improvement on the CCC? If they are to retain a scrap of credibility they should be clear on what they want to see the IOM achieve above and beyond establishing the CCC as the definition for diagnosis. Otherwise the government has just wasted another few mil and made absolutely no progress.

  3. POTSNJ
    September 24th, 2013 at 14:21 | #3

    So amazing to see all those Doctors names at the end of the letter. They really came together for us! I’m not sure how the government can argue with 35 experts?

  4. Ess
    September 24th, 2013 at 14:23 | #4

    Thank goodness for that open letter by 35 ME/CFS experts to Secretary Sebelius urging the adoption of the Canadian Concensus Criteria–someone is listening to the ME/CFS community–hearing us / knowing us. There is NO good need/reason to go around and around in circles–albeit giant steps ‘backwards’; firstly, with the definition of ME/CFS–repeat ‘NO good reason’. As these hard-working dedicated ME/CFS experts speaking out in unison say–engaging non-experts is a threat to move ME/CFS science backward.

    Now–what these experts have to say needs to be listened to!!!

    Again–what is the underlying mindset here . . . with a plan to take the science of ME/CFS round and round in circles–wrapping it up and burying it in politics?

    WHY put up road blocks to finding the scientific answers to ME/CFS ?? Makes NO good sense.

    A BIG applause to all the experts above–thank you, THANK YOU for speaking up and writing the open letter to Secretary Sebelius urging her to adopt the Canadian Concensus Criteria for ME/CFS.

    And again, Jenny, thank you for delivering this information to us–you are on a very important mission :)

  5. Gabby
    September 24th, 2013 at 14:41 | #5

    Thank you Jennie for this article. It is pretty confusing now as to how this will proceed. Hypothetically though, if the IOM proceeds with this and they will seek out clinicians and researchers with experience in ME/CFS, who will they find willing to work on this? The list of 35 have voiced their disagreement with this work. Can they turn around now and decide to serve on this panel?

  6. Valerie
    September 24th, 2013 at 15:32 | #6

    Hi Jennie,
    I posted this on Health Rising as well because I think it’s important when dealing with words and titles that we try to get it right:

    I just wanted to remind everyone that the CCC or Canadian Consensus Criteria is not the name of the document which was created by both Canadian and International experts in the field. Even the Letter to the Health Secretary refers to it as the Canadian Consensus Definition.

    In the originial Journal of Chronic Fatigue Syndrome, it is called the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Clinical Working Case Definition, Diagnostic and Treatment Protocols – A Consensus Document.

    The Overview document is called Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overv iew of the Canadian Consensus Document.

    The IACFS/ ME 2012 Primer which is based on this definition is called Chronic Fatigue Syndrome Myalgic Encephalomyelitis – A New Primer for Clinical Practitioners.

    The CCC has become a well-used nickname of sorts and I hope it has not created a bias in Government or in advocacy with its Canadian referral. These words may lead to a misperception and I believe it has.

  7. Firestormm
    September 24th, 2013 at 15:44 | #7

    Thanks Jennie.

    I believe the letter was sent around various experts asking for their endorsement in something of a rush and with a short deadline – unsurprising really given how the experts were as in the dark as we were and wanted to move fast.

    I also think that it might have crossed with the last night’s HHS announcement containing (to the relief of some) that consultations will not be a part of the process.

    I am not yet convinced HHS had seen the letter before those details were announced.

    It’s been very hard trying to piece it all together – but am fairly sure about the letter.

    • Jennie Spotila
      September 24th, 2013 at 17:53 | #8

      You are absolutely right, Firestormm. The letters crossed in the virtual mail. HHS put out their announcement prior to reviewing the letter from the experts. Unfortunate timing.

      The burning question, to me anyway, is whether anyone is changing their position based on the other announcement? Do any of the signatories support the IOM version announced last night? Will anyone at HHS alter their approach to the IOM effort in light of the letter?

  8. Firestormm
    September 24th, 2013 at 15:45 | #9

    ‘consultations will now be a part of the process’ is what I meant! Doh!

  9. rivka
    September 24th, 2013 at 16:14 | #10

    Yippee for solidarity among our ME/CFS experts! Thanks for the post, J!

  10. Chris Heppner
    September 24th, 2013 at 17:16 | #11

    I think Gabby poses some real and hard questions. If Sebelius decides to play hardball and stubbornly maintains the IOM contract, will those who signed collaborate? And behind this is a question I find difficult to think about–who, or what factors, pushed or persuaded Sebelius to take this step, assuming that she had some direct responsibility for it?

  11. Kathryn Stephens
    September 24th, 2013 at 18:15 | #12

    In this time of budget crunches, I would think Sec. Sebelius would be relieved that these wonderful 35 physicians and researchers came forward with their opposition. It is an “out” she could make political hay out of….help the patients and doctors and researchers and SAVE money, too! Adopt the definition the experts agree upon and move forward.

    I am disappointed that the CAA did not oppose this loud and clear, as it was obvious from the beginning that this would set the patient community back more than we could have borne.

  12. Sing
    September 24th, 2013 at 19:53 | #13

    My guess as to one person behind this betrayal is Nancy Lee, whose behavior as the CFSAC director showed me that her agenda was to keep everything going around in circles nowhere. I am sorry to be personal yet every individual of influence here in this field who puts politics above service to those with ME/CFS deserves careful scrutiny. We must go forward and those who cannot or will not help should be identified and moved aside.

  13. Maxine
    September 24th, 2013 at 23:35 | #14

    Thank you Jennie. Your article and table are really interesting stuff. Here’s a theme that keeps bugging me:

    THE BEST ARGUMENT AGAINST DEMOCRACY IS A FIVE-MINUTE CONVERSATION WITH THE AVERAGE VOTER.

    This quote by Winston Churchill precisely sums up the problem with using a “consensus-building methodology” amongst a group of ME/CFS virgins… scientists who have little credible experience in M.E. clinical practice nor research, such as the IOM group. The voting process will merely stoop to the masses – not to the right answer.

    Touting “consensus-building” for the development of ME/CFS criteria as a good thing is tantamount to saying, “We will let the majority rule”. One need only look at the ten-fold epidemiological expansion by the Fukuda criteria, to understand that if a vote were taken amongst scientists working on the hodgepodge definition known as “CFS”, the M.E. voices would be obliterated by the din of the Average Joe: the fatigued, sedentary, out-of-shape CFS patients, many of whom who may indeed do swimmingly well with CBT and GET. No doubt the NICE folks are slathering over the opportunity to talk about “CFS” epidemiology.

    But there are already hundreds of millions of dollars spent on depressed, out-of-shape patients. The yawning chasm in funding and care is for neuro-immune patients with the constellation of post-exertional pathology known as ME/CFS.

    In other words, when you take the wrapping off those shiny words: “Consensus-building Methodology”, the only credibility that remains is that afforded by the voters you have put together. In the case of the IOM, that amounts to “Not Much”. This process would be akin to taking a poll of current practice in ME/CFS. The majority of practitioners (and I’m not talking about ME/CFS specialists) are out to lunch, uninformed, stale, and often outright dangerous to their patients, by either ignoring the patient (or telling them to ignore their pathology), or by routinely prescribing exercise without qualification, for a patient population for which this prescription is outright dangerous. As Winston Churchill would suggest, put a bunch of uneducated, inexperienced voters together in a room, and you deserve the cr@p you paid for.

    So YES, let’s save the money from this exercise in futility: the IOM contract. And why not direct these funds to people who know what they’re doing – the signatories on the letter to Kathleen Sibelius.

    A WORD ON MARKET SHARE
    One final thought: when considering which parties did not sign the letter, I agree that many credible voices may have been merely swamped by their day-to-day work on ME/CFS. However some voices – particularly those who have positioned themselves as “the voice of the ME/CFS community” may have some ‘splaining to do. Consider that funding for research organizations is influenced by the number of people afflicted with a given disease. If you mash together “CFS” – fatigue from just about any cause – with ME/CFS, you end up with somewhere near a 10-fold expansion of your “influence” – and potentially a risk of a ten-fold reduction in budgets, should the focus shift from idiopathic fatigue-of-any-origin to the post-exertional, neuro-immune entities that fall under ME/CFS.

    Just sayin’: if you’re wanting to understand why the CAA supports the IOM contract, one avenue of enlightenment is to Follow the Money.

  14. Kathy D.
    September 25th, 2013 at 01:42 | #15

    Cheers to the 35 doctors and researchers who signed the statement to Sec. Sibelius. I thank them for unifying around this and showing solidarity with ME/CFS sufferers.

    I think the government’s behavior, as represented by Sec. Sibelius is about internal politics, and what officials are willing to do about this disease, as far as supporting research, disability benefits, treatment and medical care, as covered by Medicaid, Medicare and private insurers. It may be that what is going on with IOM is just another ploy to deny us everything, to avoid governmental expenditures on research and treatment, as well as benefits. So it’s basically shelving all of it, like tabling agenda points or sending them off to a subcommittee.

    How will the government react to this strong statement and the signatories? Will they ignore it or issue a statement, which is more double-talk and no action?

    Dr. Ian Lipkin in his phone remarks said that NIH isn’t giving out grants for research, and that we all need to advocate, as HIV/AIDS sufferers had to do in the early days? I think he’s right.

    Meanwhile, will anything happen in response to this strong declaration. I hope so, but the federal government is very adept as pushing things under the rug, saying polite things or writing letters, but basically changing nothing. Ho, hum. I’ll wait and see.

  15. Concepcion
    September 25th, 2013 at 16:02 | #16

    Does anyone know where else this open letter has been sent? Any chance it made it’s way to the major media?

    • Jennie Spotila
      September 25th, 2013 at 16:23 | #17

      I’m not aware of where else it has gone besides HHS.

  16. Jill
    September 26th, 2013 at 10:05 | #18

    This letter contains factual errors. There is no disease ME/CFS. ME patients want an ME definition. We are being ignored. CFS patients can do their own redefinition, renaming etc. Fukuda is NOT an ME/CFS definition. These people are making things up as they go along. The Canadian definition (CCC) was published 10 years ago in a journal that no longer exists, has been used very infrequently and has never been validated. The majority of authors specifically abandoned it in favor of the ME-ICC, so why they seem to be backpedaling is disturbing, though does not negate the majority of ME-ICC authors rejection of the CCC and ME/CFS paradigm.

  17. Ess
    September 26th, 2013 at 11:45 | #19

    Also–there is an element that does not want the cover-ups about this horrid disease to be exposed and the consequences that may result. Very interesting comment from Dr. Ian Lipkin–ME/CFS community needing to advocate just like the HIV/AIDS sufferers had to . . . @Kathy D.

  18. Justin Reilly
    September 27th, 2013 at 00:24 | #20

    It is SO amazing to see our researchers and clinicians come together and actually strongly stand up to HHS’ shenanigans. I think this will be seen as a turning point, in retrospect, knock on wood.

    We are making progress! I am so happy about this!

    Lets keep getting organized, speaking out together and supporting the doctors to speak out!! Prof. Lipkin is right, we need to up the ante and make a big stink like the AIDS activists did. HHS has no intention of helping us so we need to keep uping the pressure to force its hand.

  19. Justin Reilly
    September 27th, 2013 at 00:39 | #21

    I also really hope that Komaroff and others sign the letter including all the advocacy and patient organizations.

    Of course, CAA has said it will not oppose the IOM contract. At least they say they will ask that the IOM process hew to that outlined by CFSAC. I do give CAA some credit for improving over the past year or so. That said, their position is still inadequate. Please, we need all of the orgs, patients and doctors to unite against the abuse of ME patients.

    Jennie, as the long-time CAA board member and wonderful advocate that you are, I beg of you, please use all your influence to get CAA to take meaningful and important stances alongside all of the rest of us against our oppression. CAA is doing some good research I also really hope that Komaroff and others sign the letter including all the advocacy and patient organizations.

    CAA is doing some good research now, but it could be a godsend if it spoke out more against HHS and others trying to harm us.

    One simple step that advocates have been pleading with CAA to take is to employ the CCC in all their work, but CAA refuses to do this. If CAA used the CCC, this would help all patients immeasurably. I beg that they start using CCC.

    Jennie, Thank you for your consideration and for all you do!

    • Jennie Spotila
      September 27th, 2013 at 09:37 | #22

      My understanding is that CAA spoke with multiple advocates and researchers before publishing their position on Monday. I was one of those advocates, and I was honest with them about my own position and why I feel the way I do. I believe that they are now reaching out to people as they formulate a response to the developments this week.

  20. Justin Reilly
    September 27th, 2013 at 00:41 | #23

    @Justin Reilly
    Oops, sorry for the repetition in the middle of the third paragraph. Jennie, do you mind editing that out?

    • Jennie Spotila
      September 27th, 2013 at 09:35 | #24

      I did both edits you requested, Justin. Thanks!

  21. Justin Reilly
    September 27th, 2013 at 00:50 | #25

    @Justin Reilly
    And the first sentence of the fourth paragraph also is a repetition. Sorry!

  22. Jill
    September 28th, 2013 at 03:58 | #26

    ME experts do not want an ME/CFS definition. ME is a neurological illness and experts would primarily be neurologists. ME is not CFS. ME is no more CFS than MS, lupus, cancer etc. ME/CFS is bogus. Even most of the Canadian authors have abandoned it *based on scientific consensus, not beliefs or opinions. All of this “ME/CFS” nonsense is political posturing and a petty turf war. Patients as usual are the pawns.

  23. Justin Reilly
    September 28th, 2013 at 04:01 | #27

    Jeanette Burmeister avers the below allegations on her blog. I have asked for confirmation and explanation from CAA if true.

    http://thoughtsaboutme.com/2013/09/28/cfids-association-asking-signatories-to-withdraw-endorsement-of-ccc/#comment-3274

    “I know this for a fact, but can’t disclose my source:

    The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the CCC asking them to withdraw their endorsement of the Canadian Consensus Criteria (“CCC”). Also, Suzanne Vernon/the CAA is a beneficiary of the IOM contract. The CAA sent their requests yesterday and asked the signatories to comply by noon today.”

  24. Justin Reilly
    September 28th, 2013 at 04:02 | #28

    @Jennie Spotila
    Thank you.

  25. September 28th, 2013 at 11:44 | #29

    I respectfully disagree, Jennie. Technically it’s different. Yes. But it’s not different in spirit. Why would anybody think that the signatories changed their mind just days after the letter without any change in circumstances? Makes no sense. It’s pressure being applied hoping somebody will flinch and it will all unravel from there. And that’s exactly how it is perceived by the signatories, which is probably why it was reported to me the way it was.

    Being lawyers, we can argue about words. But I believe the substance of their “outreach” is quite clear.

    • Jennie Spotila
      September 28th, 2013 at 12:02 | #30

      But there was a change in circumstances: the HHS announcement about the IOM contract.

      When the experts’ letter came out, several hours after the HHS announcement, two questions immediately crossed my mind. First, would the Association change its position because of the expert letter? Second, would any of the experts change their position because of the HHS announcement? These are both fair questions.

      I’ve said elsewhere that I think the Association letter to the experts should have been more neutrally worded. I understand why, especially in the current atmosphere, people are reacting to it this way. But my understanding is that the Association has not finalized a position, and the outreach to those experts was part of that process.

  26. Kelly
    September 30th, 2013 at 02:45 | #31

    @Jill How’s your daughter doing Jill?

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