"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

Cort

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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.

Post-exertional malaise is a cardinal feature of CFS that distinguishes it from many other conditions. A study funded by the CFIDS Association and published by researchers at University of Pacific describes this consequence of modest physical and/or mental activity experienced by most CFS patients. Scientific director Suzanne Vernon, PhD, also describes how exercise challenges that provoke post-exertional malaise are being used by other research groups to further our understanding of CFS.
They just joined the Campaign to End Chronic Pain in Women in an effort to get more research into CFS and diseases like CFS.
 

Cort

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I don't think these are saying the same thing. I would love to see evidence of when the CAA has publicly stood up to the psych lobby. I think that is the question being raised here. (I don't think any one has said that the CAA is saying ME/CFS is psychiatric.)

Why do you need to pull the post? I don't understand what the violation is here.
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.
 

Cort

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Remember who your friends are. The first words out of Annette Whittemore's mouth at the October CFSAC conference was M.E. is not a psychiatric disease; it never was. These were the words Hilary Johnson spoke in Oslers Web. Whatever the CAA and its supporters say now, those are the words they were never willing to utter w
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.
 

Cort

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Publishing articles on the front page of Phoenix Rising about psychological treatments such as the Lightning Process provides far more fuel to the Psych Lobby than patients joking about a paper bag.

The first act psychologizes us; the second humanizes us.
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 :).
 

Cort

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I don't think these are saying the same thing. I would love to see evidence of when the CAA has publicly stood up to the psych lobby. I think that is the question being raised here. (I don't think any one has said that the CAA is saying ME/CFS is psychiatric.)

Why do you need to pull the post? I don't understand what the violation is here.
This is what I was referring to:

Remember who your friends are. The first words out of Annette Whittemore's mouth at the October CFSAC conference was M.E. is not a psychiatric disease; it never was. These were the words Hilary Johnson spoke in Oslers Web. Whatever the CAA and its supporters say now, those are the words they were never willing to utter
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.
 

rebecca1995

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As Cort noted, the CAA website says:

The Association has never funded any research based on the empiric definition, nor has any education supported by the Association been based on the empiric definition.
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.
 

gracenote

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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.
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.
 

rebecca1995

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This is what I was referring to:
OK, I'll let it stand and hopefully Akrasia 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.
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.
 

Cort

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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.
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.
 

Cort

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ecoclimber quote:
I talk to Annette Whittemore, Judy Mikovits, Dr. Bateman. Dr. Vernon, Dr. Goff, Dr. Hueber, Nancy Klimas, Dr. Montoya DR. Coffin, DR. Lerner as well as other leading bio labs across the country on a frequent basis and that is why I can say the things that I am writing about in this thread. It is difficult enought to be raisning money to fund research for CFS but nearly impossible if there is an atmosphere of confusion and controversy surrounding the research. The research has to be solid through validation from other credible researchers and labs before donors will provide resources to fund further studies. Controversial speculation and mud slingling destroys my chances of finding research funds for many of these organizations.

This posting, along with several others by ecoclimber is deeply offensive and insulting to us as a community.

also, I DO NOT BELIEVE ANYTHING THIS PERSON POSTS!!!!

He/she talks to most of the major researchers FREQUENTLY and HE is finding research funds for MANY of these organizations????

and WE are destroying chances for funding research????

I am making an "official" complaint echoing Natasa778 above, and wanting it publicly noted, not "behind the scenes".

And I am refraining from saying what I REALLY THINK in deference to the rules of this forum.
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.
 

Adam

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When I was first hit by the train that is ME, pulling its wagons of problems behind it, I cast round, asked round and consulted doctors and other professional people who should know better. What was I advised? That I was depressed (so I cracked a joke, always was a smiler) That I was anxious. I calmly denied this. I was told that ME people have no sense of humour. This thread, and many others here and elsewhere on the blessed internet deny that.

A sense of humor is a sign of sanity. I see it in spades in the patient community. Contrariwise, the unconditional supporters of the CAA seem to be so worthy and self-obsessed, they beg the question of who, here, is sane?

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:
 

Otis

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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:
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
 

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.
 

ixchelkali

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I would also point that the CAA is an US organization and we don't really have a psychiatric lobby here. ... We don't have any prominent psychologists informing govt opinion here.
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.
 

garcia

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They seem to have a similar standing to the MEA here in the UK. Work very hard for us, do a lot of good
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.
 

justinreilly

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I have seen forgiveness work wonders for people's well-being.
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.
 

justinreilly

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There is a common argument repeated by the psycho-babble community in the UK, that if ME/CFS people protest, then patients will get less as they 'scare off' researchers. This was recently repeated (again) in the Guardian newspaper - who's author of the article 'The Trouble with ME' claimed that Annette Whittemore 'had' been excited about XMRV and researchers around the globe 'had' been interested as much as her. A somewhat strange statement when XMRV research is only increasing, not decreasing.

Lets consider then, for one second - the concept of surrending to people who never got you off a desert island, and this if fine and dandy. So we should not 'call out' the bad guys on this premise, because doing so, is (apparently) going to waste our big chance to get funding.

There is however one problem with this.

There is no evidence in the history of medicine, that patients protesting steers research negatively in any way whatsoever.
Indeed,one would argue (logically) the more people protest, the faster things happen as people are heard, seen, and listened to.

The behaviour of 'gays' with HIV or the behaviour of challenging autistics, or the behaviour of 'us' is irrelevent.
We do not sit down at meetings, and tick boxes. We just (sadly) watch people not tick boxes.

The ME CFS community is impeccably behaved. We are, ironically for us, far too ill to protest, to march on the streets, and to my knowledge no ME CFS patient has ever attacked (even with a cream pie) a psychiatrist over the multiple decades this illness has run. That is a very good record of behaviour in my book. Compare the compliance of ME CFS patient to endless shootings and arson attacks (for example) in the USA over something like views on abortion. Or if talking disease, how about hemophiliacs who were infected with HIV in Canada. Did they remain silent for fear of reducing funding? No, as HIV was killing them.

XMRV is killing people also, just very slowly.

Research is enabled by grants (funding) and funding is not dependent upon if patients are 'nice' or well behaved, or if patients chose to expose malignant scientists who, genuinely, continue to contribute (unecessarily) to the suffering of their patients. This - is what is classed as psychobabble theorists as bad behaviour. In otherwords, exposing them!

Governments control the flow of money, ultimately.

So far our collective governments have given us zero, zip, nothing, be it in the early days of ME CFS in the 1980's or the internet enabled 'online' age of 2010

All decades that have passed with this disease as 'real' have produced the same response of no help for research, and hence patients protesting is perfectly normal and expected after potentially millions of people dying (globally) over the last 30 years.

If one didn't verbalise one's desperation - who would benefit? Patients, or those who constrain and strangle bio-medical research funding to a premature death?

It's far too late in the day (in my view) to expect people to sit down (en mass - not regarding this forum obviously) and remain docile when living a life of disablity levels (even in children) equal to other severely restricting diseases that are fully established and helped. Some ME patients have a quality of life, equal to those dying of late state AIDS. Should these patients also 'tow the line' and not demand help now? Psychobabble theorists have never been in these patients procarious position.

One only creates change, by making change happen. Things happen, by people selling the same menu, then realising there are no customers. If one says nothing about leaving - then the chef cooks the food, presuming all the customers are still seated in the restaurant. And so change never happens.

Who benefits from drastic change not occuring, and who suffers the consequences? We all know.
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
 

Cort

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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 aren’t 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 CDC’s 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 isn’t 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 Showalter’s 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 you’ve 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.
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.
 

Kati

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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.