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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 11, 2013.

  1. Mark

    Mark Acting CEO

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    Of course, there are a variety of experts with a variety of perspectives and it's impossible to please everyone all of the time. You don't state which people you consider to be "the experts", but I suppose Simon Wessely and Peter White might consider that as "experts" in the subject they should have been consulted. Good luck getting a consensus which includes them. If you think you can achieve a broad consensus of organizations, advocates and experts who support a different position, you're welcome to try, but there is of course an enormous amount of work involved in doing so.
  2. Ember

    Ember Senior Member

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    The letter to DHHS demands that the “key stakeholders ME patients and ME experts must be engaged in a full and open partnership to plan for and ensure implementation of this change.” Why weren't any ME or policy experts consulted about the change or implementation plan?
    rlc likes this.
  3. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    As I write this, there are currently 899 signatures on this petition. I have kept track of the countries from which these signers come: USA, UK, Norway, Canada, Israel, New Zealand, Netherlands, Italy, South Africa, Ireland, Sweden, Puerto Rico, Spain, Belgium, Finland, Germany, Japan, US Virgin Islands, Denmark, Greece, France, Croatia, and Malta. So, Emma, as well as others, please sign the petition if you feel so moved, as this disease, ME, knows no boundaries. We need international support and cooperation on all levels in order to tackle this horrendous problem.
  4. Ember

    Ember Senior Member

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    Dr. Carruthers' opinion concerning the relationship between ME and CFS has been roundly rejected by advocates in the past. Now it pleases Mary to use his name in support of this initiative. Taking a quotation out of context and using it to a different purpose without the author's permission is generally seen as intellectually dishonest behaviour. In Mary's message, even the attribution itself is incorrect. Yet you have refused to make any correction. If an ME expert's opinion isn't valued, why then make use of his name?
    rlc likes this.
  5. Mark

    Mark Acting CEO

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    As explained above. The partnership and consultation referred to there would come from the DHHS if and when they respond. No doubt details would be subject to change at that stage, and there would be opportunity for people to express their views.
  6. Ember

    Ember Senior Member

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    I hope that it's as apparent to DHHS as it is to me that what's at issue here is more than a matter of “details.”
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  7. Mark

    Mark Acting CEO

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    I've answered that question on the other thread already. I think I've answered all your questions, some of them several times, and if you don't like the answers then we'll just have to agree to differ. But I'll answer that question one more time...

    The letter has already been sent, and I don't see any meaning or purpose to asking for a correction on a very minor point (which, assuming you're correct, would presumably be to add "et al" after his name, even though the paper from which the quote comes is referenced in relation to the quote?). Quoting something that somebody said on public record does not require their permission, and it doesn't constitute "using their name" in support of the initiative. It's simply using words they said in support of an argument. I think it's pretty standard practice: I was never taught at school when writing essays that I had to contact everybody I quoted to get their permission in case they might disagree with the argument I was making.

    And if you think that 'taking a quote out of context' (in fact, the one you are referring to is referenced to the source) and using it to support a position that the author of that quote would not support (which is conjecture on your part and Dr Carruthers is quite able to object himself if he has a problem with this) is "intellectually dishonest behaviour", then I disagree: it would be dishonest if one said or implied that the author of the quote agreed with everything else you were saying, but that is not what has been done here. But supposing that were intellectually dishonest, then that criticism can most definitely be applied to your use on the other thread of a quote (unreferenced), which you attributed to Invest in ME, as an argument against this initiative, despite the fact that Invest in ME themselves state in their latest conference journal, under Guidelines: "Invest in ME support the use of either the so called Canadian Consensus Criteria (CCC) or the later version of these guidelines the International Consensus Criteria (ICC)."
  8. Mark

    Mark Acting CEO

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    Since that's made clear in the letter to them, and in any case obvious, I would hope so too.
  9. Ember

    Ember Senior Member

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    One more time, Mark, I did not take any quotation out of context. The statement by the International Consensus Panel that Mary has used in support of her initiative was written in support of the ICC.
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  10. Mark

    Mark Acting CEO

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    Answered by someone else above (thanks!) but as to the title of the article, it's taken from the title of the petition.

    I find the point that golden makes - that this might be a risky slogan, because it could be turned around against us - quite interesting and thought-provoking. I've been reflecting on that, and my thought is that in the end this just illustrates what a good issue it is to highlight. What we're really saying here is: This is a disease, not (just) fatigue. It's a starting point for thought about the issue, and yes anybody could take it in either direction, but if somebody were to say "yes, fatigue is not a disease, it's just fatigue, so you shouldn't call it a disease" then the answer is easy: list all your other symptoms and say "exactly, I don't have fatigue, I have a disease with many symptoms, so the name is completely inappropriate for me (and for M.E.)".

    I wonder whether any good slogan is open to cynical misinterpretation to mean the opposite of what it says. I think maybe the value of any slogan is that it opens up a sharp and important question and makes it clear what the issue is, but slogans in themselves never prove anything or win arguments.

    Having said all that, "This disease is not 'fatigue'" might be better.
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  11. Ember

    Ember Senior Member

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    You referred my questions to Mary, who has not yet replied.
  12. Mark

    Mark Acting CEO

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    I don't think I said you did. Neither did the letter - it stated the context quite clearly.

    I have no idea what the context of your Invest in ME quote was, because there's no reference for me to confirm whether IiME said it or in what context. All I know is that the interpretation you placed on it is contradicted by IiME's quote in their latest conference journal, which clearly states support for both CCC and ICC.

    The real point here is that supporting the ICC does not imply opposing the CCC always and everywhere, or opposing anyone campaigning for the CCC in any context. Invest in ME get that, as my quote clearly shows. The signatories of the letter get that, because I'm sure there are some amongst them who would ideally prefer the ICC but think that a united front is more important. I strongly suspect that most of the authors of the ICC also get that. I think most reasonable people get that.

    Correct. So what?
  13. Mark

    Mark Acting CEO

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    We've both spent an awful lot of time answering your questions, and we do have other things to do. I think all the questions on which I referred you to Mary have now been answered either by me or by her.
  14. Mark

    Mark Acting CEO

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    Sorry for the delayed reply golden.

    Phoenix Rising has signed the letter and we are supporting this campaign, but we are not 'behind it' in the sense of organizing it. We joined the discussion process part way through.

    Our original article might be helpful for a simple summary:
    http://phoenixrising.me/archives/16954

    In particular, the key points in the letter are summarized part way down under "What are we asking for?", and there's more explanation above and below that.
  15. Ember

    Ember Senior Member

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    I've been awaiting since last Wednesday a reply from Mary about the concerns that I've raised:
  16. Ember

    Ember Senior Member

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    This initiative involves adopting the CCC, calling it ME and collapsing CFS as a diagnosis. No experts were consulted, but the campaign suggests that these ends are supported by the authors of the ICC and in particular by Dr. Carruthers.
    rlc likes this.
  17. Mark

    Mark Acting CEO

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    Very much a non-answer, yes Bob.

    I'm not completely pessimistic about the systematic review though. I think something useful might come out of that, and from the other initiatives (like the CDC multi-site study). I find it quite understandable that the federal agencies feel the need to proceed in that way, and respond to these requests with the kind of tools they have, and nobody (I think) disagrees with Unger about the importance of finding biomarkers and other evidence to support eventual definitions. The problem as I see it is all the ongoing harm that's caused while they're working through all that, when there is already more than ample evidence of that harm and it's clear that short-term solutions to the problem of the "wastebasket" they've created for us are available now. (And of course we have no real basis for confidence that they'll do a good job of it this time, and plenty of reasons to fear that they're still determined to do it in a way that completely misses the point).

    So I'm not blindly optimistic about what the systematic review will throw up, but I found a few of the comments about it at CFSAC fairly promising. One key point that was stressed is that really what it will tend to do is identify the gaps in the research; the key issues, the unknowns, the things that need to be clarified - and that this will then be used to guide what research should be done next. It's quite interesting to think about what that might highlight. If it concludes that the research so far doesn't amount to much, then it has to also conclude that much more research is needed. If it finds issues like NK cells and other immune abnormalities inconclusive, then it pretty much has to say what needs to be done to resolve those questions. And assuming it reviews both of the halves of the literature that you describe, Bob, then it would seem to me that the picture you have sketched is accurate: there are two camps, one researching one broad definition and CBT, and the scientists researching the biology of the disease using a narrower definition. One possible conclusion from that picture that might seem to leap out is that the two should be seen as separate entities, and separated, and that the best candidates for tests that seem to distinguish the disease need to be studied with large multi-site studies.

    So I think it's quite possible that some useful conclusions may come out of the review. Oh, and if the review takes a close look at PACE (the study, not the spin), with no axe to grind, asking what it tells us about which subgroups are helped by which treatments (allegedly a key question for the review) then they may well come out of that with some rather scathing conclusions. I'm not blindly optimistic, but I don't assume a pessimistic conclusion either.

    My main problem with all this is that this is an incredibly slow process, and while it's fine for them to go down that road, they need to make interim changes now. The letter and petition are aimed at what we think is the most realistic shot for a strong campaign to demand those changes, and I don't personally imagine that anything that happens now could be the final word on the case definition. I think pretty much everybody now recognizes that as soon as there's been proper, thorough investigation of biomarkers and other evidence-based diagnostic metrics, the emphasis around case definition will shift from the existing definitions to new and more 'evidence-based' criteria, so I personally see the CCC (or indeed the ICC) as inevitably short-term solutions while that other work is being done. I think that the emphasis around case definitions will increasingly move towards biomarkers and objective metrics in the coming years, and anything that happens now is bound to evolve as that evidence comes in. But in the meantime, we need recognition of something considerably better than Fukuda, especially to help make that research on metrics more meaningful and to reduce the number of patients with PEM or PENE who are being told to exercise and ending up bedbound as a result.
    Valentijn likes this.
  18. Mark

    Mark Acting CEO

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    Yes.

    You keep saying that, but that doesn't make it true. We've listed the people who were consulted, and stated that others were too, and you don't know and won't know who those people are if they don't want to be named.

    No it doesn't.

    On the other hand, your own campaign against the initiative suggests that you believe the ICC authors are opposed to the initiative. Do you have any evidence of that? Have you consulted the experts you're referring to, to find out whether they agree with what you're arguing? If you could get some kind of current statement from them on the matter, it might make your case stronger.
  19. Mark

    Mark Acting CEO

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    Wonderfully succinct, thanks Alex. I don't see how she can be 'aware of the issues' and yet unprepared to make any changes in the short term to mitigate the problem. Her perspective as a scientist on what needs to be done long-term to systematically work through investigating the issues is understandable, but the failure (by her and others) to respond in the short term to what a host of patients, researchers and physicians have been telling them for years - decades even - about the harm they're causing and about what can and should be done now to address that, is pretty much impossible to excuse.
    justinreilly, ahimsa and Sasha like this.
  20. taniaaust1

    taniaaust1 Senior Member

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    Pain isnt necessarily for a diagnoses under the Canadian CFS criteria defination if you had an infectious illness type onset.

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