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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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CDC Interview on the CFS Toolkit

Discussion in 'General ME/CFS News' started by Mindy Kitei, Oct 27, 2012.

  1. Andrew

    Andrew Senior Member

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    I think their recent review of the web site is nothing but a PR stunt. Now they can say that they listened to feedback, even though the changes are only at the token or cosmetic level.

    If you remember, one of the CFSAC members said he wanted follow up discussion to review if appropriate changes had been made, and the CDC said there would be no follow up. They would make whatever changes they make, and that's that. No more discussion.

    Does this sound like the behavior of an administrator who wants to make sure she gets it right? I think not.
     
    justinreilly and taniaaust1 like this.
  2. alex3619

    alex3619 Senior Member

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    Hi Andrew, that is my suspicion too. However, we have to see the final site to be certain. I expect they will fail yet again, but they might not. If they do, then advocacy has another target. The CDC seem very good at creating things that can be objected to. Bye, Alex
     
    taniaaust1 likes this.
  3. Bob

    Bob

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    I think there might be small signs of change at the CDC. I can't be sure, but it seems like they are beginning to take ME/CFS more seriously. (But I'm ever the optimist.) For example, they are creating a new diagnostic criteria, which might prove to be very helpful, depending on how they do it. Unger has at least appeared to engage constructively, and in person, with the CFSAC, although she's not carried out what they wanted. I think the CDC will only turn around like an oil tanker, but there might be signs that it's begun to turn around. Anyway, I could be totally wrong, so please ignore me if I'm not being helpful. I tend to have these occasional optimistic turns, which aren't always helpful!
     
    SOC likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    I agree that they're turning ... but because the waves are pushing the ship around and they can't stop it, not because anyone at the helm wants to turn it around.
     
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  5. Bob

    Bob

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    Maybe Unger is willing to engage and make some changes? (Whereas Reeves was never willing to move CFS away from the psychological model.)
     
  6. taniaaust1

    taniaaust1

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    The issue that ME is being dumped with CFS compounds the matter and hence there will be some lack of support of ME/CFS clinicians having "CFS" info which isnt in fact ME (and the CDC dont use ME criteria anyway) changed.. as they are not the same thing. The only way to get around that one is if the CDC separates ME and CFS from each other and then many of the big name ME/CFS clinicians could support the ME info.

    Any changes the CDC makes will only be cause they are being pushed HARD. Im sure ones high up there must knew they were the cause of the whole ME and CFS mix up to start with (Lake Tahoe). To admit they made a big mistake, maybe has big legal reconcussions on them if people wanted to sue etc
     
    Bob likes this.
  7. Andrew

    Andrew Senior Member

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    The CFSAC recommended the toolkit be removed. The CDC declined. I don't see that as a willingness to improve. That is unless they have some magic changes prepared for the toolkit.

    As it looks now, Unger is a better politician than Reeves, but other than that, she is cut from the same cloth. But I hope I'm wrong. I really do.
     
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  8. Nielk

    Nielk

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    Change can only take place if one admits that there is something wrong with the present situation. The CDC clearly does not see that there is anything wrong with their current toolkit.
     
    justinreilly likes this.
  9. alex3619

    alex3619 Senior Member

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    My guess is they are still hung up on the claim that CBT and GET are "evidence based". Given the probable study bias range, misdiagnosis rates and tiny outcomes that do not improve functional capacity, the claim to CBT and GET being evidence based is ludicrous. Most of those researching biomedical ME understand this. I think researchers at the CDC might get this in time, hopefully, but first they have to engage with the science and avoid rubber stamp dogma.

    Bye, Alex
     
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  10. Ember

    Ember Senior Member

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    The Toolkit explicitly applies to CFS, not to ME.
     
  11. Andrew

    Andrew Senior Member

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    The people in the Lake Tahoe cohort have ME. The name given to them was CFS. It is to this population, and people like them, that the toolkit is being applied to. If the CDC is claiming otherwise, then they are just trying to weasel out of the big blunder they made with ME.
     
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    In fact, Dr. Unger admitted at a CFSAC meeting that the Reeves Empirical Criteria are NOT empirical! But she continues to use it currently in three ongoing studies. She is only marginally better than Reeves. She needs to go NOW! We need a real leader in that position such as Komaroff, Cheney, Peterson, etc., then everything else good would flow from that. I continue to demand she be replaced NOW. Please join me in this demand whenever you can. thanks everyone!
     
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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    For the past year or so I have emailed a long list of HHS brass about twice a week with three demands, one of them being that Unger go, two that the Reeves criteria be dumped and three that funding for biomed research be increased. I occasionally email the White House, but you have to fill out a form every time so this is more time consuming.

    I think its very important to start communicating with Ms. DeParle, I believe her name is, who is Obamas "point person" on getting more done on ME at HHS. We have four years, but only four, to wring any progress out of Obamas request to HHS. I'm sure they were just sitting on it to see if he'd be reelected. I really hope it does some good, but we have to be on them constantly these next four years, especially now to get anything out of "Obamas Promise."

    What we also really need to do long term is meet with our reps and Senators. That really is the way, other than communication with the white house, that change will occur.
     
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree Andrew.

    there shouldn't be a separation into ME and CFS because "CFS" with the ME patients taken out is just idiopathic CF and should be called ICF, not called "CFS", that would just confuse things even further which is what "they" want. What Im saying is there should be just ME and ICF, no CFS. I'm not happy with the name ME/CFS, but it's much better than calling the disease CFS, so I will allow it... for now. : )

    Of course, if you are in a place other than the US, you may tend to disagree, considering the even worse history of the name CFS there. But when dealing with the US CDC, I think you really have to see the naming issue from the American perspective, which to me clearly dictates no separation into ME and CFS, but does dictate the appropriate use of ME and ICF and the discontinued use of the very harmful term CFS.
     
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  15. Ember

    Ember Senior Member

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    American clinicians and researchers on the ICC panel of experts supported this statement:

    In its NCHS presentations, the Coalition 4 ME/CFS continues to defy the ICC panel concerning ME and CFS:

    From “ICD-9-CM Coordination and Maintenance Committee Meeting”
    Summary of Diagnosis Presentations
    September 19, 2012
    From “The New International Consensus Criteria for M.E. - content and context”
    By Bruce M.Carruthers, MD,CM, FRCP(C).
    Journal of IiME Volume 6 Issue 1 (June 2012)
    We've been warned that these disputes impede progress.
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ember,

    Can you expand on this, please?

    I understand that ICC says that ME should be separated out from CFS (leaving a CFS diagnosis that does not include ME). I disagree with that approach. It's possible the Americans on the committee disagreed with this, but went along for consensus and realizing this was an international document and a lot of people outside the US take your approach.

    Plus I don't always agree with every American clinician, especially Klimas and Bateman and I think one or both were coauthors. They are especially sloppy with the critical issue of nomenclature. I want to throw a rock at my monitor every time I hear the words "chronic fatigue" come out of Klimas' mouth.

    I get what you are saying and it has its merits, imo. I admire your passion on this crucial topic. And there are other smart people I respect from outside the US who take your position. I think the ICC approach on this issue, if followed would be an improvement over the current situation, including in the US.

    I strongly support the ICC, but I think in the US following that nomenclature approach would be quite harmful (though not as harmful as the present terminology situation). So I agree with the Coalition approach on this issue.

    I am sorry we disagree. I don't mean to stress you out! I know this is a contentious issue. : )

    Justin
     
  17. Ember

    Ember Senior Member

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    The ICP's largest group of authors by nationality is American. “Primer Consensus: The authors, representing twelve countries, reached 100% consensus through a Delphi-type process.” The American ICP authors include:

    Klimas, Nancy G, MD; clinician and researcher: microbiology, immunology, allergy
    Professor of Medicine and Director: Institute for Neuro-Immune Medicine, Nova Southeastern University, Ft. Lauderdale-Davie, Florida
    Director: GWI and CFS/ME Research Center, Miami Veterans Affairs Medical Center, Miami, Florida, USA

    Bateman, Lucinda, MS, MD; clinician: internal medicine with focus on ME & FM
    Fatigue Consultation Clinic, Salt Lake City
    Utah hospital affiliation: Salt Lake Regional Medical Center
    Adjunct Instructor: Departments of Anesthesiology and Family and Preventive Medicine, University of Utah, Salt Lake City, Utah, USA

    Bell, David S, MD, FAAP; clinician and researcher: paediatrics
    Retired clinical paediatrician with many years of experience of ME and CFS, Lyndonville, New York
    Department of Pediatrics, State University of New York, (SUNY – Buffalo) New York, USA

    Chia John, MD; clinician and researcher: internal medicine - infectious diseases, immunopathogenesis
    Clinical assistant professor: Harbor-UCLA Medical Center, University of California, Los Angeles, CA
    Director: EV Med Research, Lomita, California, USA

    Light, Alan R, PhD; researcher: physiology, neuroscience, medical neurobiology and neuroanatomy, mechanisms of pain & fatigue
    Professor: Anesthesiology and Neurobiology and Anatomy; Molecular and Cellular Neuroscience, University of Utah School of Medicine, Salt Lake City, Utah, USA.

    Light, Kathleen C, PhD; researcher: behavioral medicine – physiological dysregulation in chronic pain and fatigue disorders, behavioral factors in cardiovascular disease, health benefits of family support, minority and women’s health issues
    Professor: Anesthesiology and Psychology, University of Utah School of Medicine, Salt Lake City, Utah, USA.

    Stevens, Staci, MA; exercise physiology
    Director: Workwell Foundation, Ripon, California, USA

    In addition, Dr. Judy Mikovits was an original ME-ICC author.

    A year ago, Dr. Unger noted that the “opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities.” She complained, “I have gotten lots of communication from people saying that CFS is different from ME. I have got people that insist that it is the same thing. I think that there is disagreement. There is confusion in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphen name. Until there is clarity of what we are talking about, we cannot give good guidance.” Dr. Unger added, “We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.”

    Dr. Lee told the CFSAC Spring 2012 meeting, “I get e-mails all the time and one of the big ones that I keep getting is, 'Do not put ME in there. It’s different than CFS.”'

    In the CFSAC Fall 2012 videos, the FDA & Drug Development presentation (39:07) asks:
    Sandra Kweder elablorates:
    Perhaps the FDA will offer additional advice to ME and CFS advocates on Thursday:
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Good point, Ember. I'm thinking about that and it's a tough one for me. I think splitting ME and CFS would cause a huge amount of confusion that CDC, Wessely et al will inflate to even greater proportions, since confusion is their main strategy and it has worked well. On the other hand, if we continue to debate definitions, it delays drug development. Im still leaning to wanting to just get rid of CFS, because I think clarity is the foundation we need.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I definitely hugely support use of ICC in studies, of course.
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    How I see it going is if that part of ICC is accepted that CFS is basically Idiopathic CF, what CDC, NIH etc will do is just increase funding for CFS studies and do no or barely any ME studies. Then they can say, look, all these CFS patients have been clamoring for years for more CFS studies and now were doing them and the studies just confirm even more that these chronic fatigue people are head cases with no consistent bio abnormalities (because all the ME cases will have been excluded).

    Then there will be a debate in the wider community: is ME a fake disease? CDC will be saying "These people were saying up til now that they have CFS, now that that's finally shown conclusively to be hysteria they are now trying to create another fake disease (ME) and hop on. Then in another 30 years we'll show conclusively that ME is fake and they'll just create another fake disease and claim they have that one."

    You have to understand in the context of the US, no one has heard of ME except the ME specialists and now some folks at FDA, CDC and NIH. As badly as ME is treated in the UK, at least you have had a good number of newspaper articles showing severe ME cases and how debilitating it is. We haven't had that much for CFS, much less ME. So ME will be fresh territory for CDC to smear with Hysteria claims and or "this is so new we don't know the slightest thing about it, it probably is psychological but we won't know for decades for sure, there is just so much science that has to be done."

    It's just clearer to have ME and ICF and throw the name "CFS" in the trash.
     

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