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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Should Chronic Fatigue Syndrome be expanded to include other fatigue related..?

Discussion in 'Action Alerts and Advocacy' started by Snow Leopard, Jan 3, 2012.

  1. floydguy

    floydguy Senior Member

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    I think the major difference is that my preference is to go down the path of lumping ME with "other" neuro-immune disorders like Lyme Disease, GWI, MS, etc. "Fatigue" does not resonate with me at all. I think we should not just walk but run as fast as possible away from "fatigue". But as I've stated elsewhere my situation and condition is likely different than many here.

    Coming from a more numbers oriented background I want to be able to measure the dysfunction. Brain dysfunction can be measured by MRIs, Spect, PET, EEG, etc. The damage can be seen in ANS dysfunction such as POTS, blood pressure, HR, etc. The same can be said for immune dysfunction. Fatigue means nothing. It is a completely subjective assessment. I am not sure why anyone would want to research more "nothingness".
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    i don't agree.

    GG
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The main reason no ME research is being done is because of lack of funding plain and simple. Even if there were much interest among many individual researchers, barely any more, if any more research at all would get done if NIH and MRC don't spend more on it.

    I think a much better way to create fresh awareness with a 'name change.' Is pushing for the name to be changed back to ME (and 'CFS' dumped in the trash).
     
  4. Snow Leopard

    Snow Leopard Senior Member

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    The problem is that the CFS name is never going to be dumped in the trash due to momentum. The CDC for example is still trying to develop a new (subjective) criteria (as if we didn't have enough already). So the alternative is to water it down even more (to include other forms of chronic fatigue, such as those associated with Hep C, MS, Cancer etc) so it is no longer used as an end-point diagnosis.
     
  5. Ember

    Ember Senior Member

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    We can express our opinions, but as patients we don't get to write case definitions or to water them down. CFS-Fukuda excludes any previously diagnosed medical condition whose resolution has not been documented beyond reasonable clinical doubt and whose continued activity may explain the chronic fatiguing illness. Such conditions may include previously treated malignancies and unresolved cases of hepatitis B or C virus infection.
     
  6. gregf

    gregf Senior Member

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    This may be the last time I comment on this topic.

    We need to focus. Our name problem is not scientific ; it is political. The name of our illness is not a scientific issue. It is a political issue. It is not a problem, it is an opportunity.

    In the 1980s the gay community united to demand recognition of AIDS and HIV. We need to do the same. Our greatest weapon, a political weapon, is the name M.E. We need the patient community to unite behind that. We need to start with this forum. We need the people here to commit to the name M.E. Everything else is poor use of energy and money.

    I have put my money on the line to achieve this and failed. So I am pretty close to taking my money and walking away. The patients who keep supporting CFS, need to think about the people who can help, that have been driven away. Unless we can have some leadership, unless more say they understand, and stop posting about CFS, then apart from my pledges with Justin, I'm gone too.
     
    Ember likes this.
  7. WillowJ

    WillowJ Senior Member

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    Please don't go, Greg. You and Justin are two of the nicest people advocating for the use of ME.

    The way I see it, the problem is that we are still diagnosed with CFS. I do everything I know how to do, to work towards a better name (ME or something else) and a specific diagnosis (ICC or something else, preferably what I said above)... but because I agree that not all of our number who do have neuro-immune disease have exactly ME... and because many of us are diagnosed with CFS... I do often say ME/CFS [to denote ME spectrum diseases falsely called CFS]...

    but in my personal conversations I generally use ME, and if I am feeling brave or it is an appropriate context, I explain that ME is stupidly called CFS (but CFS is used for other things and some groups study it as if trying to study Tuberculosis by collecting [and sometimes they even finish my sentence for me] everyone with a cough).

    We are getting there, Greg. It will take a little more time, to educate SSA (which has guidelines, however badly followed, for granting disability to CFS patients but none for ME patients), etc. But NIH has already dropped plain CFS in favor of ME/CFS, and WE did that. There is progress.

    I really don't think, though, that what patients say to each other (even on the www) is that big of a deal. We patients aren't the problem. As you said, the problem is political. Bigwigs in the health agencies are the problem. The patriarchal medical and scientific establishments are the problem. Writing to our elected representatives and to health authorities is a big deal. Figuring out how to stage protests is a big deal.

    Please stick around--we need you.
     
  8. gregf

    gregf Senior Member

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    Thank you for your kind words Willow. I will do as much as I can and know i am not just being ... cranky.

    The problem for me is, I am getting frustrated at all the people, our fellow patients who keep saying chronic fatigue. They're breaking my heart. I feel my $1600 to promote the name ME on PR, achieved nothing.

    We need to get Cort and (say) ten senior PR members to get behind this, so that eventually it gets used, like the Gay folk used AIDS, first here, then at the press and politicians. We need a US patient to get on TV and explain why we the victims of the biggest medical scandal of modern times, demand, demand it is called ME.

    Otherwise, for my own sake, I will have to be less involved.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i hear ya, we just need to know what this dam thing is before we call it something else, or else we drag all the other conditions that come under cfs with it.

    cheers!!!
     
    WillowJ likes this.
  10. Ember

    Ember Senior Member

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    In my opinion, we patients are becoming the problem. An international panel of experts produced the ICC for us, but we can't get behind it. As Dr. John points out, it's largely ignored (http://www.thisisbristol.co.uk/Flaws-research-affect-treatment/story-14336180-detail/story.html).

    What's happening here looks to me something like Stockholm Syndrome. Suddenly CFS isn't so bad after all! I'm anxiously waiting for an ME forum to emerge because I totally agree with Greg. I feel more and more alienated on this forum. If anyone finds an ME home, please I'd like to know.
     
  11. alex3619

    alex3619 Senior Member

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    This is my position at the moment. I call my disease ME. I discuss our disease as ME. I do use CFS to refer to old studies and positions, because they were never focussed on ME and I do not like to be deceptive. So I might say Oxford CFS, or Fukuda CFS, or CCC CFS, and I try not to treat them as the same thing. So I talk about my old CFS doctor as he was not treating what was understood as ME, but I speak of future advocacy as ME advocacy. For now, I do refer to ME and CFS sometimes, deliberately separating the two, because CFS still describes something that is not covered by ME.

    This debate will not end until we have a strong diagnostic test, and at that point I think that its fifty-fifty that ME will be put behind us and we will have a new name to think about.

    However, some percentage of us will not have ME and will have something else. What do we call them? We can't abandon anyone. The people with non-ME might actually be in the majority. While I do support the idea of separating patient groups into discrete categories (say for example using ICC ME) there will also be people who don't fit the ICC ME, even after we have a reliable diagnostic test. Are they still going to be treated as having the heterogenous disorder CFS? I suspect, like many, we need to get away from CF entirely. Perhaps it is time to talk about idiopathic neuroimmune disease or something?

    One way out might be to have a broad category for neuroimmune disease that is used until a specific diagnosis is made, and to emphasize whenever possible that its a temporary category awaiting a better diagnosis. So people who fit ICC ME will have an ME diagnosis, and those who do not can have an INID, idiopathic neuroimmune disease.

    Every time I make a suggestion I know some will like it, some will want it modified, and some will think it is a bad idea.

    One of the things I do agree with Greg is that we want to get as many websites to stop using CFS and ME/CFS as possible in their description, and start using ME or Neuro-Immune Disease or something, just not CF in any of its forms. This does not have to start with PR, it can start with any site at all. However for the forseeable future I think sites like this will have to use CFS as a searchable term, so that people can find this site.

    Just to repeat, I do not think there will be any agreement until we have a strong diagnostic test. Without that everyone will have an idea of what this should be, and they are not going to be inclined to buy into some other idea. That is a reality we have to deal with, but we can start by agreeing on one thing that I think most agree with: CF has to go.

    Bye, Alex

    PS Slogan: We can't agree on a name we like, so lets agree on a name we don't: CFS has to go!
     
    WillowJ likes this.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    neuroendocrineimmune disorder received favorable response from the name change working group.

    Also, the ME-Icc solves this by saying that those who don't meet all the criteria but have PENE should be called "atypical ME."

    This would be in keeping with other diseases.

    Tina
     
  13. alex3619

    alex3619 Senior Member

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    Hi Tina, yes Atypical ME is a good idea. However, the main issue I have with ME criteria is an emphasis on acute onset. Many of us are slow onset, but with PENE. I am not sure there is any difference between acute and slow onset, except for the important epidemiological point that epidemics tend to be acute onset. This helps identify a highly specific group for focussed research. My point is: how can such a large group be atypical? Non_PENE are another issue. I think there are many look-alike disorders that are typically undiagnosed, possibly including rare genetic disorders that are not discovered yet, and I do not want to see these people lumbered with a CFS diagnosis.

    Correction, kindly pointed out by another member, I should have said CCC ME/CFS earlier. Bye, Alex
     
  14. Ember

    Ember Senior Member

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    Am I understanding you? The ME-ICC does not specify acute onset.
     
  15. alex3619

    alex3619 Senior Member

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    http://ehp.sagepub.com/content/early/2011/10/18/0163278711424281

    (I think this is the revised CCC, but older ME definitions also cite acute onset. Alex)

    The revised definition
    stipulates that ME had an acute onset that could be categorized into three
    categories: MEviral (ME was precipitated by a virus), MEinfectious
    nonviral (ME was precipitated by a nonviral infection such as a tick bite),
    and MEother (ME was precipitated by trauma or chemical exposure).
    These categorizations were based upon patients self-report. Additionally,
    patients had been asked to categorize their onset as sudden or gradual. In
    addition, they were asked: Over what period of time did your fatigue
    related illness develop? The responses included the following answers:
    within 24 hr, over 1 week, over 1 month, over 26 months, and so on. To
    meet ME sudden onset criteria, patients needed to indicate a sudden onset
    and the illness developed either over 1 week or within 24 hr.

    The ICC on the other hand says:

    2. Optional Considerations
    Classifying patients by subgroups to enable comparison of patients within the
    diagnosis of ME may be helpful in some studies.
    a. Onset: acute infectious or gradual
    b. Onset severity may be a good predictor of severity in the chronic phase.
    c. Symptom severity: mild, moderate, severe, very severe d. Criterial subgroups:
    neurological, immune, energy metabolism/transport, or eclectic

    So you are right about the ICC, and while I want to push the ICC as the most up to date and informed definition, it is still not clear it is widely accepted yet. I wish it would be.

    Bye
    Alex
     
  16. Ember

    Ember Senior Member

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    Perhaps this is Jason's version of ME based on criteria from Ramsay and other theorists. Certainly it's neither the CCC nor the ICC.

    Waiting until the ICC is widely accepted before pushing it doesn't make much sense to me. When it's widely accepted as the most up-to-date and informed definition, pushing it will no longer be necessary.
     
  17. Purple

    Purple Bundle of purpliness

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    On a more general note, I don't refer to ME as a disorder or a condition. Only as an illness or a disease.
     
    Sallysblooms likes this.
  18. alex3619

    alex3619 Senior Member

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    Hi Ember, my point was not about the wider medical community, it was really intended to be about the other ME docs. Will they accept it? I think some like it very much. If most of them are on board, promoting it to the wider medical community will be easier. When the IACFSME treatment guide is released, this would be a great package to send to docs (definition + guide), including the medical associations of every country we have members in. Bye, Alex
     
  19. Snow Leopard

    Snow Leopard Senior Member

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    I agree that we need to focus on ME as the replacement name, but CFS isn't going to magically disappear unless we show that it is non-specific and therefore irrelevant.

    The fact is that MS, Hep C etc don't "explain" the fatigue any more than fatigue in ME is "explained". Therefore those conditions should be included under the banner of CFS.
     
  20. Ember

    Ember Senior Member

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    Despite its name, I haven't seen the IACFS/ME show much interest in a truly international approach. As yet, it doesn't even list the ICC among its case definitions. While Lenny Jason works on his own case definitions and the CDC plans to revisit theirs, the IACFS/ME promises another treatment guide. Only three of its 11-member committee hail from outside the US.
     

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