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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. Bob

    Bob

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    I'm not sure how many people are still involved, engaged, or interested, in what we are doing here.

    And I'm not sure how many people are happy with the way the process is going, because there's not been very much feedback. So I'm not sure if that means people are happy with the way it's going, or have just disengaged.

    So I'm not sure if I'm using my energy in a worthwhile project...

    For those of you still engaged in this process, could you please give this post a 'like'? Or leave any comments.

    Thank you :)
    OverTheHills and CJB like this.
  2. CJB

    CJB Senior Member

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    I support any version of #9.
  3. medfeb

    medfeb Senior Member

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    I understand and agree with the intent of this recommendation but struggle with the specific wording for a few reasons...
    • While the CDC does contain that language on its website, we know that in practice, U.S. patients with ME (ICC or CCC) are given the label CFS. In fact, at the NCHS meeting on reclassifying CFS to neurological diseases, the audience was asked whether they had ever seen the term ME used and everyone shook their heads no.
    • We also know that the CFSAC Nov 2011 recommendation stated that CFS should be kept with ME and PVFS in the neurological category (which is where WHO ICD-10 has it). They also said that current evidence indicates greater similarities across the three than differences. The problem with the language on the CDC web site about ME is that it almost implies that CFS is not neurological, something that the WHO disagrees with
    • Fukuda itself, back in 1994 stated that patients would need to be subsetted. That has not been done
    • FInally, for everything that ICC does to explicitly state that ME patients defined by ME-ICC should be removed from patient populations defined by the NICE criteria and Reeves empirical criteria, it was silent on how to handle patients diagnosed by Fukuda. I wish I knew why
    Therefore, rather than saying ME should be distinguished from CFS, how about stating something like
    "Given that Fukuda states that subtyping is required and that Fukuda fails to acknowledge the hallmark PEM/PENE, patients that meet the ME-ICC or CCC should be removed from the Fukuda defined patient population and referred to as ME."​

    Regarding the patients that are "left over" in the Fukuda patient population, I don't know what to call them since I don't know what kind of patients they are. But I think that if that group is given the "CFS" label by default, it will not help us and only continue the confusion we have today. Ideally, I think we want CFS to be retired, not casually assigned to a new patient population.

    I lose track but I am assuming that there is a recommendation that states that the empirical definition needs to be retired and it doesn't need to be stated here. If wrong, perhaps we could have a separate one for that?

    The only loose thread in my mind is why the ME-ICC didn't take this step. Again, I really wish I had some insight into the reason for that.
    usedtobeperkytina likes this.
  4. Bob

    Bob

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    CJB: How about something along the lines of: it should be compulsory for doctors to offer all patients full testing?
  5. Bob

    Bob

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    CJB Agreed. The consensus seems to be to get rid of CBT and GET. So I've deleted items 7 and 7i, and offered an alternative suggestion.



    Point noted. Will await further feedback.
  6. Bob

    Bob

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    CJB
    OK, I'll delete 4, because no one was happy with it.
    What about the alternative 4i? Do you object to that?
  7. Bob

    Bob

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    CJB Are you just referring to 3b?
    I'm not familiar with US social security.
    Can others please comment on CJB's comments here.
    Would others agree that there's no point in including 3b?
    Or should it be reworded?
  8. CJB

    CJB Senior Member

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    Can we point to any other illness where this is so? The primer contains great information in the latest tools to dx ME/CFS. I think that is sufficient. Any request that compels doctors to do anything is going to go down in flames IMO.
    jspotila likes this.
  9. medfeb

    medfeb Senior Member

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    Bob,
    I suggested some alternative wording to 4i but am also fine with just removing it for the reason CJB gave on 4. As I said in the post, there are loose threads that make this one challenging to take a position on
    Bob likes this.
  10. Bob

    Bob

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    CJB Are you objecting to the whole of item 2 (2a, 2b, 2c), or just the bit that mentions a new name (highlighted in red)?
  11. Bob

    Bob

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    Agreed. So if we remove the meaning from 'compulsory', to 'advisory', would you be ok with that, or not?
  12. CJB

    CJB Senior Member

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    Yes, 3b. In order to qualify for Social Security Disability (SSD), you have to have "proof" that you're unable to work. That's the bottom line. It doesn't matter what your diagnosis is. There are many here who have ME/CFS but are still able to work. Their illness is serious, they have a valid diagnosis, but they wouldn't qualify for benefits.

    Yes, I hope others will comment.
  13. CJB

    CJB Senior Member

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    The whole of it. I'll try to find the paper I referenced. This has already been done as far as I'm concerned.
  14. CJB

    CJB Senior Member

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    This is all covered in the primer, so I would want the whole thing stricken.
  15. Bob

    Bob

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    I think we might have provisionally scrapped the recommendation re Empirical definition, for various reasons. I lose track as well.

    This whole area is a mine-field, and it's not going to be widely accepted that ME and CFS are separated clinically.

    I suggest we all focus purely on research recommendations. (i.e. using ICC for research.)

    So I propose not including anything that involves separating ME from CFS, for reasons that have discussed throughout this thread, except for research purposes.



    Agreed.
  16. Bob

    Bob

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    Would it not help patients to have some sort of recommendation that CFS patients are treated as if they have a biomedical illness rather than a psychiatric illness?
  17. Bob

    Bob

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    Hi CJB, we have discussed this in detail earlier in the thread, and discussed the reasons for including items 2.
    We are not saying that the ICC is unhelpful, but the CDC is working on a new criteria and name anyway.
    So items no. 2 address their work.
    So I'd appreciate it if you could address the discussion before we scrap all items 2.
    Unfortunately, you might have to read through some of rlc's mammoth posts, so I'm sorry about that.

    On the mandatory testing point, again, we could change 'mandatory testing', to doctors being 'advised' to do testing.
  18. CJB

    CJB Senior Member

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    We can't dictate human behavior or suggest how one should be treated IMO. We just need to put forth the evidence that already exists to refute any notion that ME/CFS is psychogenic. The science is there. We need to get the CDC website changed to reflect that reality. For starters.
  19. CJB

    CJB Senior Member

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    Tee hee!! With all due respect to rlc, I haven't been able to read much of what he's written. I'll go back and review the discussion. But it will have to be a little later. :ill:

    Bob, you know I think this is a very worthwhile discussion and it's been a bit - circular - I guess, but we need to keep talking. Thanks for hanging in there.
    Bob likes this.
  20. Bob

    Bob

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    We have suggestions re changing the CDC website.

    I don't see why the CDC couldn't make it clear on their website, and in literature, and in advise to doctors and insurance companies, that CFS should be treated as a biomedical illness, and not as a psychiatric illness.

    I don't think that's about dictating human behaviour, but it's about presenting the facts.

    Would you not be happy with that sort of suggestion?

    (Maybe we would need better/alternative wording - all the wording is provisional at the moment - the important thing is to discuss the ideas, as well as getting the best wording in place.)

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