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"The Bar Has Been Raised" - CFSAC Spring 2013, Day One

Discussion in 'Phoenix Rising Articles' started by Mark, May 27, 2013.

  1. Sing

    Sing Senior Member

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    I think you are mistaken on this point. It was largely the same group of organizers, led by Lydia Neilson who is the former director of mefmaction.com, and quite a few of the same clinicians. Both the CCC and ICC groups met in Ottawa, the home for mefmaction.
  2. Ember

    Ember Senior Member

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    No, I'm not mistaken about this. Dr. Carruthers was invited to give a presentation on the ICC at the Ottawa conference. Marj van de Sande, his co-editor, also attended. They were the lead authors for the CCC as well. But the National ME/FM Action Network had nothing to do with pulling together the International Consensus Panel for the ICC. There's overlap between the CCC and the ICC panels, but they're not the same panels.
    Sing likes this.
  3. Bob

    Bob

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    Great article Mark. A huge feat to summarise a two day conference so well! (It reflects my own interpretation of events - The bits that I saw.)

    I've heard the CDC representatives saying, on a number of occasions, that they are not using Fukuda for the CDC's multi-site study. Instead, they have asked the clinicians to give them data on any patients who they consider to have CFS (Which I assume would include ME patients.) No diagnostic criteria is required. Only the clinicians' professional judgement is required.

    I suppose that it could be said that the patients are partly based on Fukuda, as that's been the USA's default criteria for CFS/ME for decades. But I think that people like Klimas and Peterson are good at recognising a CFS/ME patient when they see one.

    Crucially, the CDC study recognises that there is heterogeneity, and is looking at subsets, and attempting to distinguish subsets. Unger said that ultimately, they may not be able to define subsets via this method, and that it may all come down to creating subsets with medical treatment trials. The CDC could give us some answers if they extend their study and test for some appropriate biomarkers. They have been asked to, so let's hope they continue to extend the study until they get some proper answers.
    Simon likes this.
  4. Ember

    Ember Senior Member

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    Why then didn't that happen with Ampligen? Or as the International Consensus Panel writes, "One only has to question why 5 of 15 CFS patients in recent phase II clinical trials of rituximab were unresponsive to treatment to appreciate the need for more specific criteria.”

    This problem shouldn't be so difficult for Dr. Unger. The cardinal feature of ME as defined by the ICC is PENE. The test for PENE in the ME Primer is a 2 consecutive day exercise stress test. And Dr. Unger refuses to use it! She needs to be held to account.
    Sing likes this.
  5. Valentijn

    Valentijn Activity Level: 3

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    The "how your money helps" angle of showing patients is interesting. Maybe it would be more effective showing ME patients looking nice and happy with the stuff that we need - mobility aids, drugs, a comfortable reclining chair, getting an IV infusion of saline or rituximab, being taken seriously by a doctor, etc. That's also a nice way to avoid the "nuts and/or depressed" interpretation some people might have when shown photos of us lying around in dark rooms during a crash.

    I think the general concept is to show how things could and should be, and then people are encouraged to act appropriately and make it (more of) a reality. Basically showing the practitioners what they should be doing and what the happy results are, instead of criticizing the lack of care and showing the miserable results.

    Reminds me of something we did in Psych 101 many many years ago. The prof brought one unlucky victim to the front of the room, and showed us a motion he was intended to make with his arms while his back was turned. Then he faced us and started making random gestures while we shouted "no" any time he got it wrong or wasn't close. After less than a minute he was frozen in place. The next student was given a new arm motion to emulate and we were to shout "yes" when he was making the right motion or close to it. He had it quickly figured out.
    SOC and Little Bluestem like this.
  6. Sasha

    Sasha Fine, thank you

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    Do you remember that cinema campaign years ago that the MEA (I think) did? It was a short film played before the main event in a major cinema chain and it was so distressing I couldn't watch it - it rang so true for me. It was a 'before and after' showing photos of a young woman, first on holiday ski-ing, looking all happy and healthy with her friends, and then in decline until by the end she looked pale and tired and was stuck indoors. It was really well done and summed it up in just two main pictures - the first and last. This was a long time ago - 15 years? Longer?
  7. Snow Leopard

    Snow Leopard Senior Member

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    Thanks to Mark for the write-up and thanks to all the advocates who attended. All the advocates were pretty much spot-on. I am glad that a committee will be formed to target getting more research funding as this is what I asked for in my submission to the last CFSAC meeting.
    SOC likes this.
  8. Enid

    Enid Senior Member

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    Thanks Mark - the bar is indeed raised at last - and did anyone not know from the very beginnings something affecting/rendering the immune system unable to cope - the silence and ignorance of GPs - the intervention of the even more ignorant Psyches - in fact the whole of medicine UK.

    And on a personal note after 12 years why did I pass out - hmm perhaps the pathetics of any Doc around here. The bar was raised originally many years ago when science/medicine first discovered the pathologies involved.
  9. Ember

    Ember Senior Member

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    The ME Primer's “Personalized Clinical Assessment & Diagnostic Worksheet for ME” should dispel any notion that the ICC are based only on doctors' impressions of patients' symptoms. The diagnostic worksheet includes sections on patient history, physical examination, laboratory/investigative protocol, differential diagnosis and comorbid entities.

    Here's the ME Primer's Laboratory/Investigative Protocol:
    This ME protocol includes the exercise tolerance test for PENE.
    helen1 and Sing like this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks, Mark, this was great!

    I too was extremely happy with Krafchick, Fletcher and Holderman; also with Friedman. I was worried when Jason and Klimas left we would not have enough knowledgeable voices holding CDC and NIH to account for their misdeeds. So glad I am wrong.

    I was sick, as usual, to hear Unger's BS. Things seem to be getting slightly better at HHS, but of course not quickly enough. I've said it before and will say it again, the CDC CFS team has always been smart; their abuse of us and their fake science is intentional, not incompetence.
  11. David Egan

    David Egan Hermes33

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    These type of meetings (CFSAC, FDA, NIH, CDC) need to bring focus and clarity to the situation, and deliver a specific set of outcomes to advance the field. Firstly, the CDC 1994 criteria is acknowledged by many doctors, scientists and patients and ME organisations to be out of date and is a source of excess heterogeneity and contradictory findings . One entire day should be set aside by CFSAC to discuss and resolve this issue and come to a firm resolution - either keep or drop the CDC 1994 criteria. And if the decision is made to drop it, then its replacement should be debated the next day. This would involve vigorous debate of the Canadian Consensus Criteria (2003) and the ICC (2011), and the bio-markers which exist for the illness (some of which are catologued here - www.cfs-ireland.com/structure.htm ). A composite of the ICC and bio-markers could emerge from such a meeting. This would enable researchers to recruit genuine ME patients, and for the FDA to assess diagnostic and bio-marker criteria in the development of drugs, and for doctors to specifically identify and target bio-markers along with clinical symptoms.
    In just 2 days, the CFSAC could move the field of ME research, diagnosis and treatment forward significantly. We need to prevent meetings which are just "talk shops" and focus on clearly defined outcomes for such meetings, which will drive the field forward and produce results.
    snowathlete and SOC like this.
  12. Nielk

    Nielk

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    Although I know that it is customary to bring in topic speakers at these meetings, I was very disappointed with their choice of topic this time. I thought that very precious time was wasted with the Medicare and insurance topics. This time could have been better used discussing the recommendations, especially the one about which criteria to use. These meetings only come about twice a year and need to focus on the appropriate agenda.
    snowathlete, Sasha and Bob like this.
  13. Bob

    Bob

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    Yes, I thought the same. The Medicare and insurance stuff might have been very useful to some US residents, but the member discussions at the end of the second day ended up as a last minute rush to fit everything in, and I thought they should have set aside at least a whole afternoon for those discussions.
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  14. Nielk

    Nielk

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    I live in the US and have Medicare yet, the speaker from Medicare did not impart any information pertaining to ME/CFS patients. What he spoke about was either the inner workings of Medicare or information that everyone here knows about already. I actually felt insulted in that they are bringing an expert from Medicare to this meeting for ME/CFS patients but, he had no direct information about ME/CFS? Why? Would it have taken too much effort/time to find out how Medicare coverage affects us? Why take the precious time away from the meeting?
    snowathlete and SOC like this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think they pretty much have already done what you are saying they should do about the definition on the first day of your plan- ie decide that a new definition is needed. I am very happy they have made this suggestion. However, I really think they should also recommend simply adopting CCC, rather than recommending it be a starting point for discussion. Valuable time is being wasted as always. Also, the simpler and more clear cut the recommendations, the better and more likely they will be adopted. CCC and ICC have already done the work, let's just adopt one and get on with it!
    snowathlete likes this.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    And last I checked CDC still was using the farcical Reeves criteria in three on going studies. This is beyond unacceptable.
    Valentijn and snowathlete like this.
  17. Bob

    Bob

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  18. Dolphin

    Dolphin Senior Member

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    Thanks for this, Mark, very useful. I have watched little of the CFSAC live over the years. Sometimes, I have read the minutes, but they can miss a lot of the detail or not really get across what happens.

    It is not simply the case that only unsupervised exercise is a problem.

    For example, in the Chu/Jason survey:
    http://www.cfstreatmentguide.com/1/...nd-cfs-99-of-patients-not-getting-better.html
    Similarly in the AfME/AYME 2008 survey:
    http://afme.wordpress.com/5-treatments-and-symptoms/ (slide 9)

    I just had a quick look at this page http://www.cdc.gov/cfs/management/managing-activities.html:
    "Not helpful" is not the same as causing harm. Some might say for example that homeopathy or some other complementary therapy is not helpful for lots of conditions; that's not the same it should be avoided as it can make the condition worse.
    Valentijn and Purple like this.
  19. Dolphin

    Dolphin Senior Member

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    Sorry to hear you are ill so long, Gabby. Also, sorry to hear about your deterioration following exercising.
    Firestormm and Nielk like this.

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