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Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 14, 2013.

  1. biophile

    biophile Places I'd rather be.

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    I do not recall either. It would be difficult to estimate without research. CCC prevalence is about half that of Fukuda.

    Perhaps it would be halved again? I am rusty right now on CCC vs ICC.
     
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  2. Ember

    Ember Senior Member

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    You've probably already read these definitions of PENE (ICC) and of PEM and/or Fatigue (CCC):
     
  3. Ember

    Ember Senior Member

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    Mark, would you please ask Mary to remove Dr. Carrruther's name from her June 6 message to patients, caregivers and advocates. She hasn't obtained his permission to use his name as she has done in her campaign.
     
  4. Mark

    Mark Acting CEO

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    The quote you are referring to here is as follows:


    I fail to see why you think it is necessary or appropriate to obtain somebody's permission to use their name when quoting something they said on public record, but it clearly isn't necessary or appropriate to do so, so I won't waste Mary's time by writing to her about that.

    I'll repeat my quotation of Voltaire (without his permission): "The best is the enemy of the good". And if you still prefer the continued use of Oxford, Fukuda and "Chronic Fatigue Syndrome" to the Canadian Consensus Criteria, we'll have to agree to differ on that.
     
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  5. Ember

    Ember Senior Member

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    Then I will contact Mary myself and hope that she has the grace to understand that her use of Dr. Carruthers' name to support the adoption of the Canadian Consensus Criteria was inappropriate. I'm sorry that you've chosen to view consultation with ME experts as a waste of advocates' time.

    Unfortunately, you omitted in your response the context of Mary's statement:
    You yourself have raised the concern about misrepresenting ICC authors.

    By the way, please don't take it upon yourself to state my preferences concerning case definitions. I've had to request of you before that you do me the courtesy of asking rather than assuming that you know my motivation. I've expected better from a moderator.
     
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  6. Mark

    Mark Acting CEO

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    That's an impressive spin on what I said Ember, and a misrepresentation of what I said. The concern I have raised is that you may be misrepresenting the ICC authors, just as you misrepresented the views of Invest in ME, as I pointed out above.


    You are continuing to oppose a call to move from Fukuda and Oxford to CCC. My comment above concerned your actions rather than your motivations: if you campaign against a change from the status quo in a positive direction, you are in practice supporting the status quo, whether you realise that or not.
     
  7. Mark

    Mark Acting CEO

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    I'm confident that Mary, and most readers, will understand that quoting Carruthers within a document calling for adoption of the CCC is not "inappropriate". Irrespective of what Carruthers' view of the letter itself may be, it's quite appropriate to quote something he said in support of the argument. One could quite reasonably quote something Wessely, or anyone else, may have said, in support of one's argument, without requiring that the person quoted agreed with the whole of that argument.

    That's another complete misrepresentation of what I wrote. Your whole argument in this thread seems to rest on your supposed representation of the views of the authors of the ICC, but I see no reason to believe you are understanding or representing the views of those experts any better than you are understanding or representing mine.
     
  8. Ember

    Ember Senior Member

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    I am not aware of having misrepresented the views of Invest in ME. I asked you earlier to quote me exactly if you are making any such claim. I stated in post #27 that I preferred the example set by Invest in ME through some of its statements. I quoted those statements accurately. The fact that you have quoted statements that they have subsequently made in no way proves that I was misrepresented their views.
    Unfortunately, your comment related to my motivation. You wrote, “And if you still prefer the continued use of Oxford, Fukuda and 'Chronic Fatigue Syndrome' to the Canadian Consensus Criteria, we'll have to agree to differ on that.” I have not declared any such motivation or preference. I have supported the ICC. The ICC authors themselves don't support the status quo.
    I would have hoped that our ME experts wouldn't be quoted out of context. The quotation attributed to Dr. Carruthers is taken from the ME Primer. In context, that statement by the International Consensus Panel is part of the rationale for using the ICC in ME research.
    You have accused me of appealing to authority and have asked me to provide ICC references. I have provided those references repeatedly. If consultation with ME experts isn't a waste of your time, when do you plan to consult?

    As an aside, the letter that Phoenix Rising signed to DHHS requested the adoption of the Canadian Consensus Criteria. The misrepresentation of that definition in Table 1 should be corrected.
     
  9. Mark

    Mark Acting CEO

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    I believe you have, in effect, either misrepresented or misunderstood the views of Invest in ME and of the ICC authors in respect of the letter to the DHHS, because you have quoted from those sources in support of your argument against the letter and against the CCC - indeed, those quotes seem to be the only basis for everything you are saying. I think this pattern is very well illustrated by the Invest in ME quotes: you quoted with approval the following from Invest in ME:

    I then pointed out that Invest in ME state in their recently-published 2013 conference journal:

    Now the point here is not that your citation of Invest in ME was inaccurate - I don't think it was inaccurate (although there was no link on it so I can't check it). The point is that - like the authors of the letter to the DHHS - Invest in ME, quite sensibly, do not see any contradiction between 'fully supporting' the ICC and arguing for the adoption of either the CCC or ICC. And that is what is really at issue here: the letter to the DHHS (which is itself a consensus document produced by a large number of individuals and organizations) calls for the adoption of the CCC, and there is no contradiction in signing such a letter even if one prefers the ICC. Invest in ME clearly don't see any contradiction there, and I seriously doubt that the authors of the CCC and ICC see a contradiction there, but your argument seems to be based solely on quotes from the ICC which are presented as if the authors of that document would oppose this letter to the DHHS, and I just don't think that follows.

    I've tried to use the analogy of Windows operating systems. To me, it's rather like arguing to an organization that is still using Windows 3.1 (Fukuda) or MS-DOS 1.0 (Oxford) that they should upgrade to Windows 7 (CCC) or Windows 8 (ICC). Either would be a significant improvement. There are arguments for and against Windows 7 vs Windows 8 - Windows 8 may be a more forward-looking choice, but it's also less proven and it may be more realistic to migrate to Windows 7 first for a variety of reasons. In our context, there is clearly a very strong basis for a broad consensus in calling for the CCC: the organizations and individuals listed on the letter have all agreed to that, and the CFSAC has also called for the CCC to be used as a basis for a definition workshop. With such momentum behind the campaign to advocate for the CCC, opposing that momentum on the basis that one would prefer the ICC seems to me an extremely misguided strategy, which runs the risk of undermining the push for the CCC (and eventually, perhaps, the ICC) and ending up stuck with Fukuda.

    Whereas you say my comment related to your motivation, as you rightly say what I actually said was that you 'prefer' the continuation of the status quo to the CCC in the line you are arguing. That doesn't say anything about your motivation; it just highlights the preference you have expressed through your argument against signing the letter. I confess I am at a loss as to guessing at your motivation in opposing the letter to the DHHS, and I certainly don't make any assumptions as to whether your motivation is a desire to move to the ICC, a desire to stick to a simple argument in favour of the latest (ICC) definition without considering the practical implications in campaigning, or a desire to stick with Fukuda, or something else; any of those guesses as to your motivation would make good sense but there's no point in me trying to guess at that. What I can say, though, is that in your argument on this thread, you are preferring the status quo to the call for adoption of the CCC, since you are not supporting that call and I don't see anything else on the table.

    The bottom line for me here is this: There is an opportunity here to push for the CCC, and to me, that would be a step forward, an improvement on the use of Fukuda. If you don't support that effort, or oppose it, you are not making the adoption of the ICC more likely, you are making the argument for adoption of the CCC weaker and making it easier for the DHHS to stick with Fukuda.

    Bob has pointed out in #125 that your argument here is 'over-interpreting' things. There's really no need for you to set the ICC and the CCC against each other in this way, and no need to argue that a quote from the ICC shouldn't be used as part of an argument in favor of the CCC. There's no misrepresentation or quoting 'out of context' in the quote of Carruthers in the letter - the source is clearly stated and the point which he made there is just as applicable to the case for moving to the CCC.


    You've provided quotes from the ICC - and that (in my view illogical) appeal to authority appears to me to be the totality of your argument - but as I and others have pointed out, and as I've tried to explain in this post, those quotes do not mean that their authors would oppose this campaign, and it's over-interpreting those words to see it that way. What you're doing is a bit like arguing that Microsoft would always oppose anyone trying to sell Windows 7 because they should use Windows 8 instead - and citing Windows 8 advertising material to claim that by trying to sell Windows 7 somebody is being anti-Microsoft. I'm sure Microsoft would prefer everybody to buy Windows 8, but not everybody can be persuaded to do so, and they are happy to keep on selling Windows 7 as well. They understand that Windows 7 users are fairly likely to migrate to Windows 8, or 9, eventually.

    The letter has already been sent, so the consultation period on that is over. The petition is already up, for people to sign, or not, as they prefer. The consultation period was extensive and included both representatives of all the organizations and the individuals who signed it, and I do consider that group to contain a number of people who are experts in the subject. They came to a consensus conclusion - the argument that has the widest support amongst the organizations they represent - and yes, some of them may have compromised on details along the way, because a consensus discussion by definition requires flexibility. If one is not prepared to be flexible, then co-operation and consensus are impossible, and so are broad-based campaigns (and only broad-based campaigns have a realistic prospect of achieving results).

    I have mentioned that I plan to contact some of the ICC authors; it would be good to get their view on the letter and on other matters too, but that's not really going to be a 'consultation' since the letter has already been sent. I'd be interested in their take on all this - my guess is that they would be supportive even if they prefer the ICC but it would be good to explore their views on it - and I'd be very interested to see interviews with them anyway, as I'm sure our members would be also, so it's something I will try to get round to when I can find the time.

    I've looked again at Table 1 and can't see any misrepresentation of the CCC, perhaps you could be more specific?
     
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  10. Ember

    Ember Senior Member

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    Apparently, Mark, you won't consult with the ME experts, but you insist on using them anyway in the campaign. Your response gives me little confidence that you intend to read with comprehension anything that I write.

    First, to your personal comments. You claim that I've misrepresented Invest in ME. Please don't make that claim again. Here is the context in which I quoted Invest in ME:
    I then quoted the most up-to-date statements by Invest in ME in support of engaging a partnership with ME experts.

    You take it upon yourself to discuss my motivation (and/or preference) and claim bewilderment. Earlier, when you asked me to clarify where I was “coming from,” I responded and explained why I take this initiative to be misguided. Consider now the rules of the forum, and stop your personal line of attack.

    You write that “there's no contradiction in signing [this] letter even if one prefers the ICC.” The implementation plan set out by the International Consensus Panel explains the contradiction.

    Mary has incorrectly attributed her quotation to Dr. Carruthers, and she's taken the statement out of context. I wonder why DHHS should engage ME patients and ME experts "in a full and open partnership to plan for and ensure implementation of this change” when the patients neither respect nor consult with the experts themselves. I find it troubling to hear the consensus statements by ME experts likened to Microsoft advertising material.

    The CCC requirements and exclusions have already been discussed in this thread.
     
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  11. rlc

    rlc Senior Member

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    Mark and Medfeb you have failed to answer my question!

    Hi Medfeb or Mark, there seems to be a feeling that there was not enough consultation with medical experts about this letter. Medfeb you have said

    the letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make.​
    Could you please provide the names of the few doctors, as this may help to provide some medical legitamacy to the proposal.

    Thank you
     
  12. Bob

    Bob

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    Seeing as I got involved earlier, and I discussed Ember's comment regarding IiME's position, I went back to look at Ember's original reference to Invest in ME, which appears to be in post #32:
    http://forums.phoenixrising.me/inde...case-definitions-now.23217/page-2#post-355796

    Ember, as you say, you haven't misrepresented Invest in ME, but based on your quote, I don't believe that you can use them to support your case, and perhaps it was unhelpful to mention them?
     
  13. medfeb

    medfeb Senior Member

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    Ember
    You sent me a PM that said
    Thank you for correcting me that it was the primer, not the ME-ICC as was stated. I will correct that.

    The text and quote that you are referring to is:
    Exactly what disease are we talking about here?

    As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

    My reading of Dr. Carruthers particular quote and of much of the primer text is that Carruthers et al are talking about the handling of the disease and explictly criticizing the fact that "CFS" has been studied as an umbrella of unrelated fatiguing illnesses, which they refer to it as a 'web of confusion'. Those are the same points being made in the June 6 document and the letter sent to DHHS - we cant study ME with varied criteria that don't require the patients to have any of the hallmark criteria of the disease. And Dr. Carruthers quote is very germaine to that argument. I think we all agree that we are in a mess specifically because of the diverse definitions under the one label "CFS".

    Regarding getting his permission to use the quote - the material is available publicly and you have quoted him extensively also. I do not believe that either of us needs to get his permission to quote something that is publicly available. On the other hand, I have had private conversations on the definition issue but because they are private, I can not share those comments without the permission of the other person. If I get permission, I will share them.

    Beyond your PM, I have a question for you.

    Truly answering the question of what disease we are talking about is going to take additional study to identify subsets and get biomarkers validated/agreed to. But if we keep lumping all kinds of patients together, calling them by the same label and then trying to study what the subsets are using just patient reported outcomes or 6 minute walk tests, then we wont get anywhere.

    I understand that you would like to see the ME-ICC and the ME-ICC primer in use. But we know where the CDC stands and what the current medical education is like with one-size-fits-all recommendations for all "CFS" and even 'CFS-like' illnesses. We know that this current state of confusion is hurting many patients in a variety of ways. And we also know that the ME-ICC has not been used in studies yet. We aren't going to get to our goal in one big jump.

    So what specific steps would you advocate to move the ball down the field in a way that might be accepted by the government and that will provide an interim step that starts to provide some protection for patients while more study is done to reach the goal? Or alternatively, would you say that we need to wait for more study on i.e. biomarkers and subsets? Or something else?.
     
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  14. Ember

    Ember Senior Member

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    Thanks, Bob. If it anyone wants me to say that I like a subsequent statement by Invest in ME less, then I probably won't mind saying so.
     
  15. Ember

    Ember Senior Member

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    Your quotation isn't a “Dr. Carruthers particular quote,” but rather a statement made by the International Consensus Panel, and the recommendations in the letter to DHHS aren't consistent with those made by the International Consensus Panel, or with those made in the 2011 presentation to NCHS where the International Consensus Panel was again cited in "support." The published statements by the International Consensus Panel should carry more weight than any private conversations with an unnamed individual on the definition issue.

    The Panel recommends removing ME patients from the CCC and from CFS:
    The quotation in your message has been taken out of the context of these recommendations and used to support a different set of interim recommendations.

    Beyond my PM, I've already asked you other questions. For example, how could it be workable to collapse CFS as part of a short-term solution? The letter to DHHS stipulates:
    How long would such studies take?
     
  16. medfeb

    medfeb Senior Member

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    Hi Ember,

    I'm sure you appreciate that it is impossible to say how long such studies on those "CFS" patients that fall outside of ME will take. First there would have to be a recognition that these conditions even exist as something separate from ME and then researchers would need to take an interest in studying them to understand what they are. Beyond that is the level of complexity of these conditions and whether they are reasonably well characterized or not. We've all seen how long research into ME and "CFS" has been going on without much effect because the criteria were so poorly defined.

    As far as I understand, while the ME-ICC primer calls for ME to be pulled out of "CFS", it is silent on what happens to these other patients. The point of the statement in the letter is that a forward plan cant just cut those patients adrift.

    So to the question that I asked you...
    What specific steps would you advocate to move the ball down the field in a way that might be accepted by the government and that will provide an interim step that starts to provide some protection for patients while more study is done to reach the goal? Or alternatively, would you say that we need to wait for more study on i.e. biomarkers and subsets? Or something else?
     
  17. Ember

    Ember Senior Member

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    As studying CFS patients will undoubtedly be a long process, the agenda proposed in the letter to DHHS isn't workable. Collapsing CFS in the short term would risk cutting CFS patients adrift.

    The ME Primer isn't silent on what happens to CFS patients who aren't diagnosed with ME. It's explicit, as I've already quoted above: “Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.... As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

    Your apparent failure to understand those words by the International Consensus Panel may explain why you write, “We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused 'CFS' definitions,” and then apply that statement to the CCC. The CCC doesn't define ME. It includes ME patients who fulfill the ICC and should be removed, as well as CFS patients who do not.

    This initiative has misrepresented the words of the International Consensus Panel, as did the 2011 presentation to NCHS. You've used Dr. Carruthers' name inappropriately, without consultation, while shielding the name of an individual with whom you've had private discussions on the definition issue. Experts on the International Consensus Panel have graciously volunteered their time and expertise without recompense for the betterment of ME patients worldwide. They deserve more respect.

    To your question: The recent CFSAC meeting gives no reason to believe that advocates have taken action that will “move the ball down the field in a way that might be accepted by the government.” They should consult with the experts who have published an action plan:
     
  18. Bob

    Bob

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    Perhaps, in future, Phoenix Rising should put each document to a vote of members before the Phoenix Rising name is attached to any communications or documents?
    After all, Phoenix Rising is not a normal organisation, whatever its legal construct, but it is a community of members who must be part of the process.
    If members vote in favour, by a simple majority, then Phoenix Rising cannot be accused of misrepresenting its members or of doing the wrong thing.
    Perhaps details of such a voting mechanism should be included in the terms and conditions.
     
  19. Mark

    Mark Acting CEO

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    I will be opening up a discussion on this issue some time in the next few months Bob. But as I noted earlier in this thread (or perhaps in another thread, or both :)) it is not usually realistic to have an open public debate about letters that are going to be sent to public officials, and Phoenix Rising did not have this option in this case. It diminishes the impact of letters if they have been posted and discussed publicly before they are sent. The recent letter about the alleged intimidation of CFSAC members is another example: there is not time, and it is not practical, for such letters to be discussed and voted on publicly before they are sent. Similarly, one would not plan a press release in a public forum.

    One option for us is to have an advocacy team which may include members who are elected by the membership (we did try to set that up but we didn't get enough volunteers). The other orgs that signed these letters don't have the unusual situation that Phoenix Rising has, which you mentioned, so this is an issue for us as an organization regarding how we are constituted. I'll be opening this question up for members to discuss soon, and there are a number of options - one option, for example, may be for us to become a membership organization with a membership fee, but there's a lot of work involved in that - but in the meantime, without making structural changes to Phoenix Rising, the only option we have at present is for the board to sign letters such as these, or not.
     
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  20. Bob

    Bob

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    Thanks Mark. I haven't been able to read the entirety of these threads, as they've been rather heavy going.

    My specific thought is that some of these letters seem to be made public on day that they are sent. (Unless I am wrong about that?)
    So perhaps Phoenix Rising could put such documents to a vote for one day only, before they are sent, in a members-only subforum? (And perhaps send the details out via email to attract members' attention to the issue.)
    I don't think that a public discussion would be helpful, at the voting stage, because it would be impossible to create or modify such documents by consensus, but a simple vote might be practical.
    Anyway, it's just a thought, and I'll leave it there, as you plan to have a full discussion.
     
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