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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Now that CFSAC's over, what should we do?

Discussion in 'General ME/CFS News' started by Sasha, Jun 15, 2012.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think that it would be helpful if everyone physically boycotted the meeting. We would just send in the usual written testimony and instead of in-person testimony, people could send in DVDs or testify by phone. This would accomplish almost all of the good of testifying in person; and would also have the benefits of sending a protest message and save people the considerable resources it takes to attend the meetings in person. I think those resources could be much better spent on additional advocacy.

    Even if there isn't a formal coordinated physical boycott, I would still urge individual advocates to testify by DVD or phone and put the saved resources into more advocacy. Maximizing our scarce resources is extremely important.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    I doubt even that would bring any media interest or enough to bring in any changes at all, we'd be lucky to just get one news report on it saying we werent happy.

    Something which is quite big which could be lost is "hope". At least while they are talking and there is some communication going on.. there is hope of change.

    Maybe other tactics need to be being used beyond that. I personally think other things need to be done if we want to have change.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    We don't have much influence on what they do so maybe it's almost a moot point to discuss it.

    however, i think it would generate some minor media interest at least. even if not, it would be one more very persuasive fact to marshall in an argument that huge change is needed. it would also be one more attention-getting fact that would make for an over-all attention-getting future media report about the whole messed up situation. every little bit helps.

    as many of us have said, enough of the same old, same old soberly giving the facts to the government. We've done it a million times and it hasn't worked for decades. We need to make as many attention getting splashes as possible to get any attention and thus any help. HHS will NEVER HELP US UNLESS FORCED to by embarrassing public and Congressional attention

    Tania, you said you think that other things need to be done. What do you suggest?
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think an even more effective use of this type of technique would be at HHS or CDC headquarters. I have a beef with CFSAC for not being more forceful, but the main problem is of course at HHS and CDC not listening to CFSAC and continuing to persecute us. The huge drawback with this is that people will be arrested and this would be very hard on their health. I for one, in my state of health, am not willing to subject myself to such stress. Perhaps there are some who are healthy enough to go thru this and would be willing to (but it might be hard to find them). It might be worth doing if we really got organized, but people would really have to commit to helping out, organizing the media, lining up lawyers, etc. I would commit to helping out as best I could.

    I think protests such as this would be a more impactful way to use the resources many would normally devote to getting to the CFSAC meeting.

    Maybe this is a good idea or maybe there is another high-impact protest we could do with less chance of damaging our health; maybe not. We need this type of protest- chaining ourselves to CDC doors, street theatre with fake blood in front of CDC or HHS, something that says 'We are NOT going to go to the back of the bus anymore.' We are going to have to up the ante to get any help.
     
  5. Ember

    Ember Senior Member

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    Regardless of what “some of the ICC scientists” may have said in private, the ICC, CDC, CFSAC, NCHS and many patients have not yet agreed with the Coalition's plan to do away with CFS and replace it with ME. And that plan is dividing us.

    Dr. Unger told us at the November CFSAC meeting that the CDC has heard about our disagreement:
    Days later, David Tuller quoted Dr. Unger:
    With no agreement among patients, between patients and the scientific community, and among the experts, Dr. Lee quickly dismissed any idea of calling CFS “ME” at last month's CFSAC meeting. CFSAC supported the Coalition's Option 1 in November “because CFS includes both viral and non‐viral triggers.” At that time, CFSAC noted that the science is not yet conclusive concerning the relationship between CFS, ME and PVFS:
    The Joint Request for Action complains that NCHS has not yet made a crucial determination in the Coalition's favour:
    Yet the Coalition may have undermined its own proposal.

    The seeds of confusion were sown shortly after the ME-ICC announcement on July 20, 2011, within days of the Coalition's having submitted its NCHS proposal. The Coalition quickly updated its proposal to include the ICC. Based on its misreading of the ICC, the Coalition stated in its September NCHS presentation, “When properly defined, CFS is the same as ME.” Kim McCleary also mistook the ICC initially to mean that “ME” should be used as a replacement for CFS. Cort posted (and quickly removed) a controversial article repeating these misinterpretations. Despite his intentions, that article was never revised and reposted after the IACFS/ME Conference.

    Marly Silverman's conference presentation on the Coalition's efforts was planned for a lunch hour. Scheduled at 8:30 on Saturday morning, Dr. Carruthers' ICC presentation gave her little or no time for any revision based on new insights. Though Fred Friedberg had allowed time for Q and A about the new criteria and expected a lively session, none was reported.

    Had the ICC presentation been digested by patient advocates last September, it might have given them pause. The ICC does not support the Coalition's statement that CFS is the same as ME. US subject-matter experts, if contacted by NCHS, may not contradict the ICC to agree with the Coalition. Given the paucity of ME subject-matter experts in the US, NCHS may well consider statements made by international experts, statements that contradict the Coalition. The Coalition may then have inadvertently undermined its own proposal. The alternate NCHS proposal is favoured, of course, by the CDC.

    Should the Coalition defer, until the science has spoken, its plan to “phase away the awful 'CFS' label and diagnostic criteria, replacing it with ME” and agree instead that ME is a distinct and separate subset of CFS, that decision would both clarify its reclassification request and allow patients to speak with one voice again. If there's one disease or syndrome with subsets, then pending any retraction of CFS definitions, that disease or syndrome is currently CFS and the separate subset is ME.

    The Joint Request for Actions asks for "a significant, sustained and coordinated commitment from DHHS to address...key priorities: (1) Resolve the definition, name and classification confusion.” By taking a position consistent with the ICC, the Coalition would help to resolve confusion born of its own creation.

    (Edit: Note again that the lead authors consider the CCC to be an ME definition.)
     
  6. CJB

    CJB Senior Member

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    I just received the following reply to my e-mail on the subject:


     
  7. Ember

    Ember Senior Member

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    Last November, Tina, you invited me to get public clarification from the lead author of the ICC concerning the relationship between ME (ICC) and CFS (Fukuda). Now, nearly early eight months later, you indicate that Dr. Carruthers' clarification was rejected by advocates in favour of undisclosed comments made by unnamed ICC scientists in private.

    Surely Dr. Carruthers' presentation to the MEFM Society of BC, Dr. Broderick's letter in the Journal of Internal Medicine, and Dr. Carruthers' article in the Journal of IiME carry more weight than the private, confidential exchanges to which you allude. Last December, the ICC panel advised:
    Patients deserve this expert guidance. Pernicious disagreements over ME and CFS serve nobody.
     
  8. jspotila

    jspotila Senior Member

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    Six advocates and myself have sent a letter to Assistant Secretary Koh regarding the vacancy left by Dr. Rose and the charter renewal. You can read the full letter on my blog. We ask Dr. Koh to:
    • Immediately issue a call for nominations to fill Dr. Rose's slot or, failing that, to draw from the public nominations submitted in 2011.
    • Fill Dr. Rose's vacancy with a research scientist in order to maintain the charter-mandated balance.
    • We oppose the addition of non-voting organization representatives, and instead recommend the addition of additional voting slots for individuals with experience in the issues affecting people with ME/CFS.
    The deadline for charter input is July 31st (two weeks from the date of CFSAC's email asking for input). I hope others will be able to submit input on the charter as well!
     
    Roy S, CJB and Bob like this.
  9. Ember

    Ember Senior Member

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    By taking the position that “CFS is the same as ME” and advocating for the hybrid name ME/CFS, the Coalition4ME/CFS (including PR) has aligned itself with the NICE Guidelines instead of honouring its commitment to “advocate for the adoption of the Canadian Consensus Document.”

    The NICE Guidelines follow the CMO 2002 recommendation “that the composite term CFS/ME is used and that it is considered as one condition or a spectrum of disease.” The WHO approach proved too contentious for the Guideline Development Group:
    By contrast, the CCC (despite its ME/CFS label) separates ME from CFS: ”The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS....” The ICC states that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

    With the welfare of so many sick people at stake, shouldn't the Coalition be prepared to support its key statements with evidence?
     
  10. Ember

    Ember Senior Member

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    Changing the name of a disease or syndrome doesn't change the research retroactively, Tina. If it used a CFS (Fukuda) cohort, then it remains CFS research. ME research uses an ME cohort, and both the CCC and ICC define ME cohorts. Again I rely on Dr. Carruthers: ”The results of Jason et al’s studies have confirmed that the Canadian Definition...had clearly separated cases who have ME...from those who have CFS....”

    Cort reports that the latest Program Announcement for the NIH has for the first time left the definition open. Advocates should be pushing now for CCC and ICC cohorts to be used in research. The Coalition has committed to “advocate for the adoption of the Canadian Consensus Document.”
     

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