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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. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

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    ahimsa, golden, Bob and 2 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Well, I'm behind it! Great stuff.

    I'm sure there are areas where people might disagree but like just about every complex issue, I think it's best to focus on the big wins - huge wins - we'll get if we get behind this and not on side-issues.

    The use of the Oxford criteria here in the UK has been catastrophic - catastrophic - and we've got to get back to a tighter defintion.

    Well done to those who have worked on this. We're immensely stronger when we stand together and speak as one voice. I'm glad to see our advocates and advocacy organisations working together on this important issue. We need to see more of this.

    It was worth having insomnia! (2 am here).
    Enid, snowathlete, Bob and 2 others like this.
  3. HowToEscape?

    HowToEscape? Senior Member

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    The placement of #2 in the list is going to raise many cynical eyebrows. It's true, but considering that
    i) that people are scamming off disability is a common trope
    ii) it got that way bc there is a subculture which proudly does exactly that. e.g., a co-worker of mine who fell down stairs at his house while drunk and arranged to get it written up as a work injury, etc etc
    iii) thus primed to see a zebra in the shadows, people unfamiliar with our disease will see a zebra in the shadows.

    I think we have to be very careful to lay out information first. It then becomes clear, or at least visible that outcomes are much worse when we are struggling with insurance/disability to maintain a shadow of former income. I might have been able to get back to work had the insurance been working with me instead of against me; having a zero income, being homeless etc appears to have set off a permanent entrenchment of the disease.
  4. alex3619

    alex3619 Senior Member

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    I agree with this proposal, at least in general. I have yet to give it a detailed analysis. However I can see the counter-argument: but the CDC are already working on this! They have made progress! You are not prepared to give them time to finish? We have to be prepared for these kinds of arguments.

    Has anyone considered a broader petition to have this request acted on? Something everyone can sign?
    snowathlete, Sasha and Valentijn like this.
  5. Tally

    Tally Senior Member

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    This is wonderful! I completely agree with everything stated here and it makes me happy to see the patient organizations working together.

    I sincerely hope that even those that might have a few disagreements decide to support it anyway. We need to stand together if we hope to make any progress.

    The situation is so terrible, so we should start moving forward and not worry that it might not be perfect. We are so far away from perfect anyway.
  6. Valentijn

    Valentijn Activity Level: 3

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    I think the concern isn't that CF patients will lose related disability/insurance benefits, but rather that the change of name might result in bureaucratic confusion where patients newly diagnosed with "ME" won't have a recognized disease, and/or patients with an old diagnosis of "CFS" will have a disease which no longer exists.

    Given the propensity for benefits agencies and especially insurance companies to bungle things in a way which is profitable for themselves, a name/definition/classification change needs to be carefully planned, implemented, and monitored.
    snowathlete, Bob, Sasha and 1 other person like this.
  7. Mark

    Mark Acting CEO

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    Yes, that's under consideration, there has been quite a bit of discussion about that. I think it's fairly likely there will be one in the fulness of time, but for now, this thread is a good place for our members to indicate their support and express their views on the subject in general.
  8. Enid

    Enid Senior Member

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    Actually say ME/CFS here in the sticks everybody's eyes glaze over, or much feet shuffling, A proper name more descriptive since we know the essential pathologies - Immune system, Endocrine system, Neurological system. NEI (not too catchy) perhaps, and ME thoroughly discredited by the psyche lobby here in the UK. As far as I'm concerned the Immune system crashed, research findings confirm - why - this is whatever the viral/bacterial overload compromised. A bit of Sherlock Holmes perhaps but the essential is to my mind something overcoming the Immune system.
    snowathlete likes this.
  9. Bob

    Bob

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    I personally support this letter, but I know, from talking to various patients over a number of years, that this issue raises major concerns for some CFS patients. Some CFS patients have had a CFS diagnosis for a long time, are comfortable with it, and familiar with it. They and their doctors may not be familiar with the term 'ME', may not be familiar with the differences between CFS and ME, or may not be familiar with the details of the science or the politics that has played out in relation to this disease over the decades. Or some patients simply do not agree that ME is a discrete entity, and are of the opinion that not enough science has been carried out to scientifically separate CFS from ME. And then of course, some patients currently diagnosed with CFS, may not experience Post Exertional Malaise, or neurological symptoms etc.

    I think some patients will find it threatening to have the term 'CFS' withdrawn, and maybe rather worried and even frightened about having such a change implemented. Some CFS patients might worry: "Where does it leave me if I can no longer have a CFS diagnosis?"

    So I appreciate the leadership in this area and, in my opinion, it's certainly an essential issue that needs to be addressed, as an urgent priority. But, in my opinion, any clinical changes need to be designed and implemented with much thought, and great care and sensitivity, making sure that no patients feel frightened, neglected or abandoned as a result of any changes. If great care is not taken then there may even be a backlash against this move, from some very worried CFS patients, which the government authorities will find confusing. A patient backlash against an insensitive implementation of new policy could be counter-productive in terms of achieving the desired long-term goals.

    So this project has my personal support but as long as it is implemented with care, compassion, consideration, and sensitivity towards all patients.

    What I think can be safely implemented immediately, without any consultation necessary, is that all government-funded research should be expected to use a CCC cohort, alongside any other cohorts that the researcher requires.
  10. Enid

    Enid Senior Member

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    What one is comfortable with whatever the title. ME for want of no better name then but well describing - now a dustbin term.
  11. snowathlete

    snowathlete

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    Broadly speaking, I agree with this and I'm pleased to see it happening. Am I right to suspect that this group of organizations that are collaborating together, is growing and reaching out to other like-minded organizations?

    And is there a method in place by which new organizations can add their signature to this letter? And subsequent collaborative efforts like this?
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  12. alex3619

    alex3619 Senior Member

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    I do think the name is less important than the definition and the actions. The name ME is already co-opted by psychobabble. Most doctors probably think or suspect its hysteria/somatization/functional, especially in the UK. The trashing and distortion of the label ME began 18 years before the term CFS was created. The term CFS was simply a further step.

    Getting a good definition in use in both research and clinical practice is thus the real goal until the science advances, and doing it in a way that causes minimal problems. Of course those definition all happen to be ME definitions. What a name change does though is send a message, and one that might be very worthwhile to get out there.
  13. Enid

    Enid Senior Member

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    I wonder if it not too confusing for the average Doc, unable to rise above (like in their textbooks) - a combination of symptoms - they are educated to one simple "organ" dysfunction only. Well I must say all my (failed) investigations (they couldn't understand), it is accepted one has to be rather brighter than your average Doc (including those who choose psychiatry) to enter the fields of neurology, immunology, virology etc.
  14. Mark

    Mark Acting CEO

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    We're very mindful of those concerns, Bob, hence the lengthy explanation of the letter and the questions and answers. You're absolutely right to emphasize that the implementation requires a great deal of care to address the concerns you've mentioned, and we will be taking great care over that. Phoenix Rising, in particular, is very mindful that the objectives of the non-profit cover "ME/CFS", which I take to mean that we have an obligation to defend the interests of everybody who currently has an ME, CFS, or ME/CFS diagnosis. We're certainly not prepared to abandon "CFS but not ME" patients and leave them with no diagnosis and no medical cover. As far as clinical application goes, there will have to be a plan as to what happens to those patients.

    But as Julia Newton's research found, something like 40% of ME/CFS patients (in the UK at least) actually have another undiagnosed illness. That's just one study, but even in that study the true figure could be even higher of course, and we know from our own experience that missed diagnosis in the ME/CFS population is a huge problem. So if that's typical of the situation of patients under the "CFS" umbrella, then how can we ever hope to get effective research results from a mixed cohort like that? While such mixed cohorts remain, confusion and contradictory research results are inevitable. So I agree with you: the mandatory use of CCC for research that purports to study "ME" is the first and most important focus. Going beyond that, though, to the clinical definition, it's just as unhelpful to allow for an umbrella-type "CFS" diagnosis that leaves patients with other (sometimes life-threatening) conditions in limbo. That does no service to those patients either. It's long past time to throw away that waste-basket...
  15. Mark

    Mark Acting CEO

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    I think that's a reasonable assumption. :) It's a fairly loose 'coalition' at the moment but I expect it to grow and take shape, perhaps a somewhat more formal structure, in the course of the next year or two. Time will tell...

    As I mentioned above, mechanisms for some kind of petition are under discussion, but this particular letter has been written and delivered so in that sense it's completed. I guess anybody who wants to is free to contact the recipients of the letter and express their support for it...

    I think that one's a pretty safe bet. :)
    snowathlete and Sasha like this.
  16. Mark

    Mark Acting CEO

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    Spot on Alex. I don't think it's a good idea to get too hung up on the name: the important issue here is the case definition behind the name, and that's what the letter aims to focus on.

    You've put it so succinctly here that I'll repeat this sentence from your quote, for emphasis:

  17. medfeb

    medfeb Senior Member

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    Alex and Mark - I agree - the name is nothing without getting a definition that describes the hallmark symptoms of the disease. Whatever name is used, if it becomes associated with the diversity of definitions associated with CFS today, its going to cause confusion.



    Snowathlete and Mark - The intent is to provide a mechanism for others to sign onto this letter and then we will resend the letter with the additional signatures. We just need to figure out the easiest/best way to do that. Will let you know as soon as its in place.


    That's interesting and seems to be reinforced by some other studies. There's also the large Nacul study done in England that found a prevalence for Canadian Consensus Criteria patients that was roughly half of Fukuda CFS patients. And Maes' examined Fukuda CFS patients and found that roughly half had PEM while the others did not. Finally, a recent study by Vincent found that only 36% of CFS patients examined had PEM although she said it could be a methodological issue.

    The challenge is that there is no way to know what that 50% is once you pull of patients that meet CCC - especially if Oxford was used. Some probably have a known medical disease and have been misdiagnosed. But others may have some condition that has not been effectively studied yet. They need to be correctly diagnosed or studied further for the disease they have
  18. Mark

    Mark Acting CEO

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    Here's that study - some clues here maybe:
    http://www.ncbi.nlm.nih.gov/pubmed/21132135

    http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf
  19. Ember

    Ember Senior Member

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    Can anyone comment on the process? Who had input? Were any medical or policy experts consulted? What does the endorsement by Phoenix Rising mean?
  20. Mark

    Mark Acting CEO

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    medfeb can describe the process better than I can, because Phoenix Rising only got involved in the drafting process partway through. As far as I understand it, the concept and then the letter was discussed extensively amongst the signatories over a period of some months, revised several times in response to comments, and participants then decided whether to sign the final draft.

    The Phoenix Rising board decided (unanimously) to sign the letter. Based on previous discussions on the forums over the last few years, I felt that most of our members agree with the objectives set out in the letter (for example, a long thread discussing case definitions some time ago found almost unanimous support for campaigning for the use of the CCC for research, amongst members with a variety of different opinions on other matters), and many members have said in the past that they want Phoenix Rising and other ME/CFS organizations to work together and speak with a strong voice. So my opinion was, and is, that most of our members would want Phoenix Rising to sign this letter.

    However, the board is mindful that Phoenix Rising does not yet have 'democratic' processes in place for board membership or advocacy decisions, and as we have stated before, we are committed to putting such processes in place: that is what the board wants to do. Believe it or not, we actually don't want to take these decisions, we want to enable our members to do so. In the future, the aim is to establish an Advocacy Team, and I expect that in future it will be that team (or a subgroup of it) who will take part in such discussions and make decisions on whether to sign any letters presented to us. Moving to that model is not as simple or straightforward as some might imagine, but we are determined to do that, and we look forward to Phoenix Rising co-operating closely with other organizations and individual advocates in the future, as we have done here. I don't want to sidetrack this thread with that discussion of PR internal processes, though; that's something we're working on and we should focus on the letter itself here.

    Meanwhile, I believe that we have taken a decision that most of our members will agree with, and I hope that our members will sign the letter when a mechanism to do that becomes available in a few weeks time.
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