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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. rlc

    rlc Senior Member

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    Hi Mark, RE

    I've never understood the mentality of people who have no medical training whatsoever who think that they can redefine a definition like the CCC and say that they have decided that it should be called a ME definition, when it is not a ME definition it is a definition of ME/CFS, it very clearly states that ME and CFS are the same disease.

    Do you think that you are better qualified then Dr B. Carruthers?? Maybe you would like to explain to him why you are so much more knowledgeable than him and have the right to redefine what disease is defined by the CCC.

    And as for your extended waffle trying to make out that you and the US CFS orgs are the victims and making personal attacks against people and comparing them to

    This is highly offensive and abusive and I have reported it

    It seems to me that it is you who is using “traditional tactics of the security forces” to try and stop anyone from expressing decent against this US CFS orgs plan. By trying to imply that anyone who doesn’t like this plan is against trying to achieve something good for ME patients.

    Do not bother to reply I have better things to do with my time!
     
  2. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    I can understand ME patients in the UK not wanting to be contaminated with the "CFS" fiasco because I am an ME patient in the US that does not want to be contaminated with the "CFS" fiasco. But thanks to our infamous CDC, I have been caught up in that web with no place to go. ME patients in the US have been obliterated and ignored since day one of the 1984 Incline Village ME outbreak, which was totally mishandled by the CDC. This outbreak eventually was given the name "Chronic Fatigue Syndrome," which in turn was subsequently expanded to include who knows what kind of "fatiguing illnesses." ME virtually does not exist in the US, even though many of us are ill with ME. Along the way, efforts were made by some our ME doctors and researchers to get that name changed. As an interim step, the term ME/CFS was proposed with the thought that as future research revealed more of the neurological, immunological, etc. nature of this disease, the CFS would be dropped and we would be back to ME. That was the plan, and US patients began using ME/CFS. Now, we could at least distinguish ourselves from "chronic fatigue," depression, etc. Just as we didn't want to be contaminated with the "CFS" fiasco, we also don't want to be contaminated with the psychiatric fiasco taking place in the UK and other European countries. There was a very unfortunate time when Dr. Reeves of the CDC shared the same views of the psychiatric proponents in the UK, and they fed off each other. We both have had these traumas and injustices to work through. We both want the same thing: ME recognized for what it truly is -- a complex, severely debilitating neurological disease with multi-system involvement as described in Ramsay or CCC or ICC. I believe that is the goal of the letter to DHHS and this petition. It is my hope that these actions will put pressure on the US DHHS to open up this dialogue so that the process of getting an accurate and appropriate case definition for ME in the US will begin, so that fruitful research and appropriate treatments can follow. This is not just a US or UK problem. ME knows no boundaries. Signatories on the petition come from many different countries: Norway, New Zealand, Netherlands, Italy, South Africa, Ireland, Spain, Germany, Korea, Japan, Greece, Croatia, to name a few. ME is a global problem and it will take international cooperation and support on all levels to tackle it.
     
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  3. Mark

    Mark Acting CEO

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    rlc

    I'm not at all stifling anybody from expressing their views on the matter or expressing dissent. I could moderate, delete, or ban if I wanted to do that, and I haven't done so: I value open and productive discussion and a range of views. I'm also able to respond and express my views as well and that's all I've done.

    I'm sorry if you interpreted my comments about infiltration of extreme political groups as applying to you personally, or to any other people on this thread in particular, that was certainly not my intention. As I said, I think it is something that very likely happens, since it is a known tactic (I provided an example and there's more evidence of it available), and I think it's important to be aware of it, but I also wanted to make clear (and I'll re-iterate now if I didn't) that I don't at all think that's a full explanation of the pattern I see, which is that in any political scenario there is a temptation for people on the extremes to spend more time attacking the people closest to them for being (in their eyes) too moderate, rather than building an alternative or attacking the 'enemy' or the 'other side'.

    I want to stress that what I'm trying to say here is not that you should not argue for the points you have raised, particularly the points about engagement. What I'm trying to say is that it is more productive, in terms of achieving the changes you want to see, to be constructive rather than destructive, positive rather than negative, in the way that you go about making those arguments. And I'm also not leveling this as a general criticism of you personally, rlc, because I haven't really seen that from you in general - I'm saying it in reaction to what you said a few posts ago suggesting that people should be getting 'mad as hell' with the advocacy groups, because what you are advocating for there is basically civil war. This is a highly unproductive suggestion for all of us and achieves precisely the opposite of the results you say you want to see. Because the more that kind of thing happens, the more defensive the groups attacked become, and the more likely they are to exclude people who attack them...so it makes open engagement and transparency less likely, not more likely - and there you see the vicious cycle that so often happens in those situations. And it works this way always and everywhere, on an individual level and on a group level, and this is something I've learned myself, and changed in myself, and it's been a revelation in terms of understanding how to achieve my goals and get listened to, so I offer it to you and you can take it or leave it as you choose.

    If people want to change things about how the advocacy groups operate, the best way by far in my opinion is to volunteer, work for them, and do the work of implementing the changes you want to see. Alternatively, if you can't stomach that, then set up your own non-profit and run things the way you want to see them run. Then, at least, you will understand all the realities of how simple, or difficult, it is to achieve the things you are arguing for. In other words, frame your response to the problems you observe in a positive and constructive way. "Be the change you want to see in the world".

    I'll keep on saying that to everyone, because I see a lot of this reality from the inside of some of these situations, and I'm telling you that the reality is that many and perhaps most of us - certainly all of the leadership of PR - want to change the engagement model in exactly the ways you have described, and what we need in order to do that is more people getting their hands dirty and sharing the workload of working through the difficult practical, technical and political problems to achieve that, and less people using up resources by shouting from the sidelines about what they want other people to do for them.

    It's all offered as genuine advice on what, in my experience, achieves results, and what doesn't, but if you want to see it as intimidation then I guess that's up to you. It is certainly not intended that way.
     
  4. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    Eloquently said, SOC. I get that "we're mad as hell feeling and not going to take it anymore" every time I see a new signature go up on the petition.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Anyone want to lay odds that the psychoquacks will start claiming that we are making/keeping our own B cells overactive/dysfunctional by thinking the wrong way and/or being too inactive...?
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hmm - in the UK I would be very hesitant about saying I was mad...
     
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  7. Firestormm

    Firestormm Guest

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    I have said for many a year that 'it' should have been referred to as something like Ramsay's akin to Parkinson's. That leaves a certain ambiguity behind cause and mechanisms.

    Even with a label of Ramsay's Disease it might not put these issues behind us - I think 'chronic fatigue' would still be a feature and we'd have to work hard to overcome this association. Changing the label is only part of the issue of course.

    There is something else we seldom consider and that is that a person with something like cancer or MS might well be experiencing the same 'ignorance' and poor service from their clinicians as we so often complain about.

    And even Ramsay's is historic I suppose. If we had started out with Ramsay's though then things might have been different - but equally they might not.
     
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  8. Firestormm

    Firestormm Guest

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    Deliverance or Disaster? The Canadian Consensus Definition Petition Conundrum (Take the Poll)

    Cort's latest raises concerns about the petition and the support of CCC and also puts a poll in the field.

    This was his conclusion:

     
    golden likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I like the idea of that kind of name, but maybe not that particular one as it could get confused with Ramsay Hunt syndrome, which coincidentally I think I had at age 5, and which I think was due to the chicken pox virus herpes zoster, which coincidentally (again!) may have started off the leaky gut/poor carb digestion problem that eventually contributed to the development of ME.
     
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  10. golden

    golden Senior Member

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    Ric@ it was helpful - thanks for your answer.

    @thread - i will have to review all definitions etc before signing my name to the petition , I also have to review corts article stating the .CC .CC & ICC potentially leave us all open to an increased liklihood of a psychiactric diagnoses ...

    (I just want to stress here, that I am disgusted by the prejudice the mental health community face. The only purpose for me personally highlighting the fact that M.E. is a physicsl illness is to try to get the physical help and support that I need and deserve and also to avoid being harmed by ignorant psychological treatments- applied to my physical illness ).

    This is a thread like no other. I apologise that I think I am completely missing the political points, including PR.

    Is there a dead line on this petition? I will try to research properly - but my incling is becoming to not sign it (so far )-

    I would be happy to go into a new pile of patients, say called , The Unlabelled :) Providing It does not mean a psychiactric diagnoses by default.

    I have been let down by advocates before who are in bed with the agencies they are supposed to be protecting me from - due to their compromised funding situations etc. But I dont think this would be PR. I think Grace Charity for M.E. makes this point about M.E. charities.

    We all have to say 'you go your way and I will go my way '...

    And if our paths happen to cross through a petition, then so be it - if they dont - thats surely got to be OK too...

    What a 'To Do ' :)
     
  11. Firestormm

    Firestormm Guest

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    Of course hindsight is a wonderful (though not always) thing and who could really have forseen that 'ME' would have attracted all of this 'heat'. Nothing to say that Ramsay's wouldn't also of course - but CFS is too specific and I think that's what most people's arguments are about: scientists, clinicians and patients'.

    But what to do now if the question were posed? And more importantly where to place the disease - in what category? Could we - should we - 'escape' the syndrome label?

    So many interesting philosophical questions coming out of this debate. Good stuff. Bit draining though - ain't it? :)
     
  12. alex3619

    alex3619 Senior Member

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    Yes. Odds are 9:1 they will do exactly as you say. There are still some claiming that H. pylori induced ulcers are largely psychosomatic.

    As to Ramsay's Disease it wouldn't matter much. The problem is the claims, rhetoric and influence of those who want this to be psychogenic. Who has read Ramsay's book that discusses the mass hysteria crisis in ME? Its next on my wanna buy list.
     
  13. golden

    golden Senior Member

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    I suppose everyone knows this already !

    But i just found this:

    http://m.hfme.org/site/mobile?dm_pa...d53a1&fw_sig_premium=1&fb_sig_network=fw#2021

    M.E. is a brain virus with onset of 4-7 days of infection. It has similar patterns and bio markers.

    t is sudden onset only .

    Since I have never been given MR/CT scan......I can not confirm M.E. in myself.

    C.F.S. is a collection of Major missed diseases !!!! Since I have never been tested for lupus , lyme etc.etc. If it is not M.E. I have I do not know which major illness I have ...

    It is a lose lose situation. Having CFS joined to ME does a disservice to ME people...

    And having CFS means the real diagnoses has not been found.

    This is very helpful too me as for the first time I feel clearer on the subject .

    This is my current new thinking on the subject. I no doubt am wrong .

    Going to research more .
     
  14. Nielk

    Nielk

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    While you are doing your research, Golden, keep in mind that ME and CFS mean different things depending on which country one lives in.

    As far as I know, one cannot get a diagnosis of ME in the US.

    I had sudden onset to my illness. I fit the CCC and the ICC criteria, yet I can't get a diagnosis of ME here in the states as of today. That is where this letter to the DHHS would help me, personally.
     
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  15. golden

    golden Senior Member

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    Nielk ,

    I think it maybe the US that created the CFS label labeling 1988. (stress, think )

    Why would the world health organization not apply in America ?

    (i cant seem to find this answer )
     
  16. urbantravels

    urbantravels disjecta membra

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    Because AMERICA.
     
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  17. golden

    golden Senior Member

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    urbantravels & snowathlete,

    dont get it .

    if the WORLD health org. applies in Africa - why not America ?
     
  18. alex3619

    alex3619 Senior Member

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    The World Health Organization is a toothless tiger. They have no authority in a country unless that country grants them authority. The US uses the ICD, but creates its own version of ICD. I think the UK does too, but I could be wrong.
     
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  19. golden

    golden Senior Member

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    Yes , i see - i found a WHO headquarters in America but its called Panho...

    will have to research all this now too. A lot seems to be being made of the WHO classification code of M.E. as a Neurological disease .
     
  20. alex3619

    alex3619 Senior Member

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    The WHO classification code essentially means nothing. Its a bureaucratic code, not an endorsement of a particular viewpoint. Oh look, this country has this many people under this code. The science and the experts are what matters. Diagnostic criteria are important, but the name isn't. Misdiagnosis is important. Biomarkers and treatments are important. Funding and medical understanding are important. The name CFS is a bad one, and ME/CFS is not much better, but ME is bad too. Somehow that gets lost in this debate. Most doctors who know anything about ME probably have an opinion biased by the biopsychosocial view, and are unaware of the scientific breakthroughs, expecially in the last decade.

    Many experts are going to use the ICC, as will leading ME doctors. The CCC definition is not being proposed as a perfect solution, but as a minimal standard. My guess is that for years the CCC and the ICC will be used side by side, and then researchers will abandon the CCC. This is not up to us though. Its up to our researchers and the CDC.

    The letter and petition are about making a political statement, and creating awareness. I see no reason why we cannot put the CCC forward as moderately well established, while at the same time we make it clear that this is an interim measure and the science is evolving rapidly - so the real message to everyone is: watch the science. Things are changing. The ICC is the best definition we have currently. In five years it might be obsolete, in ten it almost certainly will be.
     
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