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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ahimsa, Jun 3, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    The Associations entire Research program is dedicated to uncovering the physiological problems that underpin CFS. That includes research in XMRV, HERV-K18, the pathogens in the gut, vascular problems, brain mitochondrial problems.....

    Check this out. You would never have heard of repeat exercise studies without the CAA- they were the only ones to fund that study. Now that protocol is sweeping through the research community.

    They just joined the Campaign to End Chronic Pain in Women in an effort to get more research into CFS and diseases like CFS.
  2. Cort

    Cort Phoenix Rising Founder

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    Heres what the CAA did last year =- check it out http://www.cfids.org/cfidslink/2010/010601.asp Tell me those activities are aiding a psychological perspective of CFS. Show me ANY of them that are.
  3. Cort

    Cort Phoenix Rising Founder

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    This absolutely untrue. The CFIDS Association may not have been as forceful as you wish but they have never treated CFS as anything but a physiological disorder. That's what their research and policy has shown since they've been in existence. If you think a CME that says that behavioral therapies can help some people with some of their symptoms is stating that CFS is psychological then you are over-reaching greatly.

    The CFIDS Associaton was started by a CFS patient, its board of directors is full of CFS patients...if they're not as aggressive as you wish fine, but to suggest that they've never been willing to state that CFS is not a psychiatric disorder is unbelievable. Look at their activities, their research, their scientific conferences.....and show me how those are the actions of an organization that believes CFS is a psychiatric disorder. Having Peter White saying something in a publication is not going to be enough. Particularly since he was dwarfed by Dr Peterson and many others demonstrating physiological approaches to CFS.

    Particularly since they engage in a robust scientific endeavor to find out the physical causes of CFS. Again, I understand that you want them to be more aggressive but to suggest that they 'abandoned' patients to the wiles of psychiatric lobby is a bit much.

    I would also point that the CAA is an US organization and we don't really have a psychiatric lobby here. When the sexual abuse studies came out the CAA was strongly against them and when the CDC announced they were looking at CBT they were strongly against that as well. We don't have any prominent psychologists informing govt opinion here. We did have Bill Reeves but the CAA came out very strongly against him and lead the last charge to get him removed.
  4. Cort

    Cort Phoenix Rising Founder

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    If one post on the LP on the Front page of the Forums out of all the posts that have been posted there is that upsetting to you then maybe you would find another ME/CFS Forum that is more to your taste. Occasionally there are going to be more stories like that, probably very occasionally, but they will be there. CFS is a big disorder with lots of subsets and if someone gets better doing one program -whether its Vistide or LP or as in Dr. Lerner's case, Valtrex, as I just posted then its going to get reported.

    If that was that troubling to you - and it sure sounds like it was - then you might be more comfortable elsewhere. There are plenty of ME/CFS Forums and there are more happening all the time :).
  5. Cort

    Cort Phoenix Rising Founder

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    This is what I was referring to:

    OK, fine, Rebecca's comments can stand and hopefully she will be able provide evidence that the CFIDS Association believes CFS is a psychiatric disease. I don't know if I'm going to be able to find a statement saying that CFS is not a psychiatric disease. I don't think they feel the need to state that; I think they feel its a given. I don't see how you can look at their programs and come to the conclusion that thats what they believe.
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    As Cort noted, the CAA website says:

    Yet the "Patient brochure"* distributed by the CAA says, "More than 4 million people in the United States have chronic fatigue syndrome (CFS)..."

    Jennie, if you're reading this, would you be able to tell us how, exactly, the figure "more than 4 million people" was obtained? In other words, which case definition was used?

    *If this link doesn't work, go to http://cfids.org/sparkcfs/elements.asp ---> Patient brochure.
  7. gracenote

    gracenote All shall be well . . .

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    I did not use the word aiding a psychological perspective of CFS, although as has been pointed out before, some of the materials included on their website (ie Peter White) may have done so.

    I personally want to hear from the CAA, in plain language, repeated over and over, in many different formats this message:

    ME/CFS is not a psychological illness. Too much time, too many resources, have been dedicated to finding a psychological causation or correlation for this disease. Let's stop wasting time and money. Let's treat this like the devastating, life-altering, family destroying disease that it is. It is unconscionable that our government has misused funds, watered down the definition, and led us in a direction that is of no use in solving this illness. And to all of you who put political and financial considerations ahead of the health of your patients [speaking directly to the psychiatric faction such as those who did the non-replication studies], we are not going to give you the time of day; we will not take your efforts seriously any longer.​

    Anyway, Cort, that is what I'm looking for. Hope springs eternal.

    And now I will have to bow out of this discussion I'm much too tired and ill to continue.

    ----------
    ETA: I'm noticing new posts have been posted while I've been writing this one. Hope it still makes sense, because this is all I have at the moment.
  8. rebecca1995

    rebecca1995 Apple, anyone?

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    Cort, I assume you mean akrasia, not Rebecca. I wouldn't want you to think I'm declining a challenge, but it's not mine to undertake.
  9. Cort

    Cort Phoenix Rising Founder

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    It was obviously from the CDC's studies using the Empirical Definition. I know THAT really bothered some people but it never really bothered me. It was a PR campaign and I thought the bigger the number the better, actually. The CAA had make some compromises on that campaign to be sure but the campaign said CFS was a real and legitimate illness and it went out to alot of people and it did raise awareness and whatever its flaws I thought it was worth it.

    THe CAA is a conservative organization - I have no bones about admitting that - they are too conservative for my tastes - but to suggest they are 'not our friends' and they're not willing to say that CFS is not a psychiatric illness - that's an incredible statement to me.
  10. Cort

    Cort Phoenix Rising Founder

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    I got it - you said you don't believe ecoclimber and you don't like the tone of the post and thanks for keeping your cool.

    Here's what I can tell you about ecoclimber. Several months ago he contacted me asking me about getting organizations funding. He explained he was having trouble getting ahold of the Whittemore Peterson Institute and asked me to help and I actually, surprisingly enough, was able to help. He was also interested in helping other organizations.

    He had felt for a long time that there was nothing for him to do with CFS - but XMRV kind of springboarded him into action. Before he became ill He told me he was a former executive for Microsoft and he wanted to use his ties to create several donation sites on this organizations (and its a huge one) philanthropy network. Microsoft also provides a lot of grants - he thought he might be able bypass some of the steps and get researchers from the WPI, in particular, to give an oral proposal to the review boards. That sounded like pretty exciting stuff.

    The catch is that MS rather picky and he thought that any hint of controversy particularly given the fact that we already have a controversial disease would kill the effort. He decided to move ahead anyway but the 3 negative studies came out.

    Remember MS is very conservative. Dr. Mikovits public stating that she thought vaccines were involved in autism and then her speaking at that conference, he felt, harmed his ability to present her in a credible light to this organization. Particularly he felt that the sometimes sent public bickering that took place amongst the different researchers on both sides made his job harder. The Huber incident was problematic because she is a respected scientist and yet he felt was treated badly. Eventually he felt the WPI didn't have much of a chance in the present climate given these incidents fact and the fact that there are no positive studies for CFS right now.

    I understand the complaints about the post; it did come off rather preachy.

    I don't know EcoClimber well but I can tell you that he is very interested in advocating for CFS and he has lots of interesting ideas about how to do that.
  11. Adam

    Adam *****

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    LOL@Jace

    I guess none of them have met me? Eejit extraordinaire.

    BTW, did someone mention a bag?

    No. Not the sick bad pull-eeeeze, the other one that helps you breathe.

    :Retro tongue::Retro tongue::Retro tongue:
  12. bel canto

    bel canto Senior Member

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    Cort,

    Thank you for the background information. My complaint re: tone stands.

    bel
  13. Otis

    Otis Señor Mumbler

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    Adam,

    If humor is a sign of sanity, you're one of the most sane people in these parts. :cool::Retro wink::rolleyes:

    Hmmm, perhaps there is a limit to this humor theory. ;)

    Otis
  14. V99

    V99 *****

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    Thanks Cort, the information is very much appreciated. It will take me a bit of time to read it, but as I said before I don't know much about the CFIDS Association. They seem to have a similar standing to the MEA here in the UK. Work very hard for us, do a lot of good, but leave a lot of patients wanting more. The shout it from the rooftops type of thing.
  15. ixchelkali

    ixchelkali Senior Member

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    Cort, my friend, you know I love you more than my luggage, but I have to disagree with you on this. I think we do have a psychiatric lobby here in the US. Even if they arent all psychiatrists/psychologists, those who promote and/or insinuate that this disease has a psychiatric origin constitute a psych lobby, and it has been highly effective in this country, to the detriment of the patients.


    From the beginning, when we had Stephen Strauss as the head of NIH publically suggesting it was a psychiatric disease and advocating the biopsychosocial approach in the BMJ,
    • to the CDCs infamous Dear Sirs, I an SICK joke letter,
    • to professor of psychiatry Peter Manu being quoted in newspapers and by the head of NIAID that CFS isnt a real disease
    • to the 1989 NIH press release trumpeting a Lifetime History of Psychiatric Illness In People with CFS (based on Straus interviews of 28 patients)
    • to Elaine Showalters book claiming that CFS is a hysteria (along with reports of satanic ritual abuse and alien abduction)
    • to the NIH sponsoring a state of the science meeting at which the expert speakers were Stephen Straus, Simon Wesseley, and Michael Sharpe, and apharmaceutical rep
    • to the CDC using Peter White as a consultant
    Anyway, I could go on and on, but youve lived through much of this history. My point is that these people have, sadly, shaped public policy, public opinion, medical opinion, and research funding and review in this country, as well as in the UK.
  16. garcia

    garcia Aristocrat Extraordinaire

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    V, I must have missed that bit! I'm not sure what good the MEA does for us. Certainly hasn't done anything for me in 10 years of having this illness. Their patron was last seen hurrying out of the InvestinME conference as if he had something more important to do.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Having health promoting emotions certainly can help heal.

    However, in this case, forgiving and forgetting our oppressors will harm us more than help us imo. Wessely and the other usual suspects will just continue to persecute us resulting in decades of serious illness.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Very well said! The only disagreement i have is that you say some ME patients have disability equal to an AIDS patient two weeks before death; actually the studies show the average level of disability in ME is equal to an AIDS patient two months before death.

    AIDS patients stood up for themselves and they have $3Billion a year in funding- 1000 times (not percent) as much as we do (of course their efforts were 'helped' by the obviously terminal nature of the disease). Look at what our silence and the CAA's underplaying our case and collaborating with CDC has gotten us- nothing.

    Silence = A Living Death
  19. Cort

    Cort Phoenix Rising Founder

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    I love that - I love you more than my luggage....:D:D. Yes, for sure there was a time when the 'psych lobby' almost overcame. I think it was around 2000 - it was touch and go there for awhile and I would never say that it doesn't play a role - or that Dr. White hasn't had strong ties to the CDC. I would note that the CAA did play a major role in hobbling that horrible conference before it got started, as I remember. I haven't heard of Manu in years actually; I wonder what happened to him. Strauss was a problem, for sure...a big problem - I imagine the most influential guy on the scene there, for awhile.....he's gone for good.

    I just don't think things are nearly as bad here as the UK. The CDC is surely no bed of roses but they have never done a CBT or GET study. The NIH has but most of their studies are on physiological processes and some of them are real doozies - Taylors attempts to learn about CFS patients as they come down with it, the Huber Herv study, the Stewart vascular study.....You can't say there's alot of science coming out of the NIH (ie the disease is not worth studying) but there is some really good stuff.

    Since that one conference we had the conference devoted to Neuroimmune Research - again it was hardly a big success but it was on Neuroimmune Interactions not behavior.

    The general position of the feds here, it seems to me, is to ignore the disease and then spend what little money they do provide - mostly on physiological/clinical stuff and then some to behavioral. Until they got that WPI grant out they ignored (except for natural killer cells) the immune system and pathogens.

    Its not a bed of roses, for sure - but there's not this blind obsession with a behavioral focus like the UK and most of Europe - thank god for that; its a strange kind of luck but we are lucky in that way.
  20. Kati

    Kati Patient in training

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    Cort, you said "I just don't think things are nearly as bad here as the UK."
    Do we know that for sure?
    Just last week I was attending a conference where a doctor was doing a research to assess the benefits of LP. (Which I know you agree with but I certainly don't for CCC patients, until you can ascertain for sure there are no co-infections). Canada doesn't even check for viral reactivation, viral titers.
    We don't know how many people have been diagnosed as somatizers on the continent despite having real physical symptoms. I attended a "dealing with chronic illnesses" workshop and this woman described symptoms of CFS and FM after a car accident and was diagnosed as having a somatizing disorders and was given antidepressants even though she wasn't depressed.
    What about the health insurance premium shooting sky high forcing people to give up their insurance- The power of these insurance companies is unreal, which isn't quite the same in the UK. People in the US , in Canada and around the world ended up just like the ones in the UK, with no care.

    Now I am not saying that UK doesn't have it bad. I am just saying that most PWC have been neglected and abused in some ways or another.

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