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The CAA Pamphlet to Educate Doctors

Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.

  1. starryeyes

    starryeyes Senior Member

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    Hi valia,

    I'm sorry to hear that your doctor has made you feel like you are suffering from "wrong beliefs" about CFS. It's really unfortunate that your doctor is continuing to remain completely ignorant about the progression in CFS that is experienced by millions of PWC even after you've tried to educate him.

    I don't blame you a bit for being afraid to try GET. I am sure you know intuitively how much and when and if you should exercise. This needs to be your choice because the repercussions can be very severe and might make you completely dependent on others for the rest of your life.

    May I ask what country you are from?
  2. valia

    valia Senior Member

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    Sorry if this appears twice, I posted a reply 2 hours ago but it hasn't shown up.


    Hi Teejkay, what a surprise! to get a response I mean. I am one of those people who is normally ignored by the group, dont know why really, perhaps I just dont accept bull when I read it.

    I am from the UK, and have been fighting off CBT/GET and anti-depressant drugs since I first became ill 2 years ago.

    I know at times I may appear to have a very cynical attitude but believe me this is only due to my experience of the medical profession over the last 2 years, I have been diagnosed with ME by my rheumatologist and neurologist, I have also had a positive western blot for Lyme disease, but my GP still writes Fatigue on all of my reports.

    I mean what the hell, he doesnt use any other term CFS or ME just plain Fatigue, so yes I am cynical, I have given him reams of info about ME and Lyme disease, he simply bundles it up and sends it back to me.


    OK! I may sound paranoid but if White is in cahoots with the CDC this is what you have to come.
  3. Andrew

    Andrew Senior Member

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    I was trying to stay away from controversial threads, but here I am again. I hope what I write does not offend anyone.

    1. It unscientific to do studies that eliminate all symptoms from ME/CFS except fatigue, and then claim to have studied ME/CFS. It is flim-flam science. The CAA should be protecting pwc from this, not validating it by presenting it as real research.

    2. The topic of exercise is very sensitive issue for pwc because we have had our lives trashed by bad exercise advice. But the thing is, there are writers out there who usually do not make pwc angry with their exercise advice. And the reason is because their guidelines include safety mechanisms that keep pwc inside a safety envelop. The safety envelop allows people who can exercise to find their helpful range, and prevents people who can't exercise from wrecking themselves.

    3. I don't think that simply mentioning PEM in guidelines is enough. Doctors need to be given a basic understanding of energy conservation and how it fits into total daily activity.
  4. Martlet

    Martlet Senior Member

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    I get up on this snowy Christmas morning to find so much anger, in one case liberally sprinkled with profanity, and all because a couple of us do not think the pamphlet to be a bad publication.

    TeeJay:
    I did not say they worked well for me. Understanding my own reluctance to admit that I was ill and accepting my new limitations was a great help. As for GET, if you re-read what I said, my doctor encouraged me to do what I could and to increase it as long as I was comfortable. What actually helped me to go from bed- and wheelchair-bound was something completely different and not a matter for this forum. But CBT and GET help some people to actually improve, therefore, just as with other therapies, it should be included as an option. There are things in that pamphlet that harmed me. Florinef is a suggested medication but I participated in the trials and ended up with convulsion, but I don't say they should exclude it based on my experience because it helps some people. Equally, I have seen advice from PWCs in these forums that are toxic to me - Mucinex comes to mind as it gives me palpitations - but again, I don't say that peer advice should be excluded, because these various methods have helped some people.

    Right. And as you say, the pamphlet explains this, so it is not the pamphlet that is bad, but those doctors who promote something else.

    Which propaganda are you referring to here? As for the wheelchair, I did not say it improved my condition, although it probably improved my mood as it meant I could get out of the house.

    Valia:
    The pamphlet addresses that first point, right at the start. It makes it clear that this is not a somatisation disorder. I am sorry that your doctor is pushing CBT and GET. I do know and understand that fear of being made worse.

    Forgive me for this, but you have two doctors who have validated your illness. For the time being, we will all have some doctors who can't bring themselves to acknowledge ME/CFS...for me, a cardiologist screaming at me that CFS does not exist come to mind. I just hope you are receiving medications that help you, regardless of what your stupid doctor writes on your records. Your other two doctors know what is wrong with you. Try and hold onto that if you can.

    And finally, I am sorry you have been neglected in the forums. :( I don't think it has anything to do with what you write so much as the sheer number of posters we have. Looking forward to getting to know you.

    And now I have a turkey cooking and need to go and look at it, just to remind myself that it is Christmas Day.
  5. Martlet

    Martlet Senior Member

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    It did not offend me. :) I thought you made some good points, although I don't understand how you think that the CAA is validating the promotion of fatigue above other symptoms. Perhaps I missed something. It would not be unusual.

    I would agree with you there.

    And now I really am going to look at that turkey.
  6. Mithriel

    Mithriel Senior Member

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    Thalidomide was a very good anti nauseas drug, vioxx helped thousands of people with arthritis. I took co proxomal for years and have found nothing that relieves the pain in the same way.

    BUT all these drugs were withdrawn because a few people suffered bad side effects, vastly less indeed than the 35 - 50% who say they have been made worse by GET.

    Why should a single person with ME/CFS have to risk becoming bed bound and tube fed if that level of risk is not acceptable to someone with a different illness?

    The latest survey done which lauds the benefits of GET didn't have a column for "made worse". That shows how much they care about our well being.

    Mithriel
  7. Samuel

    Samuel Bedbound with NO DOCTOR

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    Hi M,

    Can't speak for Andrew, but:

    Most people trust the medical establishment. So it is not unusual that most people think that those studies were done with good definitions, honestly, with no conflicts of interest, cognitive biases, logical fallacies, prejudice. Instead of politics that looks to the uninitiated as if it were science.

    Read denialist papers. You will change your opinion.
    Find out what definition they use. Find out if they even state what definition they use.

    Perhaps that is what he meant.

    Samuel
  8. Countrygirl

    Countrygirl Senior Member

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    CAA's validation of Prof. Peter White.



    Hello Valia,

    You have another reply, this time from your side of 'the pond'! :)

    Yes, I share your concerns about the reference to Prof. Peter White in the CAA's brochure. Many have suffered greatly in the UK because of the apparent wilful dismissal by the psychiatric lobby of most of the research evidence that confirms/suggests that this wretched illness is physical and that GET, in most cases, is either unhelpful or actually dangerous. To condone Prof.White is, to us here in the UK, to condone the disgraceful treatment ...or lack of it...that we have experienced over the decades.

    We are all too familiar with the stories of what can only be considered medical negligence and even abuse that have been the result of the medical misinformation that is peddled by the particular group of psychiatrists of which White is a leading advocate. Many of us are very well aware of the harrowing stories of very sick children who have been separated from their parents by force, locked up in psychiatric wards and exercised until they are severely ill, or, as in one case, thrown into a swimming pool to 'prove' that his paralysis was just a ' mistaken illness belief' (he sank and had to be rescued).

    While such psychiatrists as Prof. Peter White have such a strangle-hold on medical opinion, very sick patients in the U.K. will continue to be the victims of medical misinformation, the Government will continue its refusal to fund biomedical research, and the severely ill will continue to be harrassed by the Department of Works and Pensions and denied benefits. It is uncomfortable for us in the U.K. to read that a leading U.S. patient group is effectively validating one of the official champions of the 'Wessely School' that is responsible for the misinformation that results in the neglect and abuse of severely ill patients.

    Dr. Yes argued the case eloquently. Well done!



    As for Lyme disease.......

    The magazine Interaction has reported that the Chief Medical Officer has sent a letter (CMO update) to GPs to warn them that M.E. patients are falling victim to 'unvalidated' diagnoses of Lyme disease by private labs. I doubt that doctors will take such a diagnosis seriously now. Battle on!!

    And with that final note.....Happy Christmas everyone! :D :)
  9. fresh_eyes

    fresh_eyes happy to be here

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    For my part, I'm not horrified so much by *what* White says in this pamphlet (though I think it's incorrect and even downright deceptive) - I am horrified that the CAA has included as an expert a man who surely we all agree is one of the great villains in the world of ME/CFS. (Or perhaps I'm wrong, and we don't all agree on that?)

    I frankly expected the CAA (and CAA supporters) to respond to this criticism with something along the lines of, Oh, that pamphlet is old, we didn't know back then what a nut job White is...We'll revise that pamphlet and remove him immediately.

    I am flummoxed. :confused:
  10. valia

    valia Senior Member

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    Dear Martlet,

    I do get ignored but I am usually grateful for that, I find it hard to dig my brains out of my boots twice in one day and cant normally respond to a response to my post, I have been extremely challenged today.

    However I think it so important that you listen to us who know what it is like to have an illness entirely controlled by the Psyche brigade.

    I was diagnosed with ME by a rheumatologist he believes I have a real illness recommended treatment CBT/GET + anti-depressant drugs

    Neurologist diagnosed ME he believes I have a real illness recommended treatment CBT/GET + anti-depressant drugs

    GP calls it FATIGUE he thinks I am a time wasting malingerer recommends CBT/GET and anti-depressant drugs

    I have been buying antibiotics from India for my Lyme disease (I never thought I would resort to that) but thats another story.

    If you let the likes of White in you will soon have the same problems that we have, there are many people here that hide themselves and their illness away for fear of being sectioned for false illness beliefs.

    You have been forewarned, you have the chance/choice to stop this, we did not. Please dont think, Ooh isnt it awful in the UK

    White is advising your government and now your advocates it is happening to you.
  11. Cort

    Cort Phoenix Rising Founder

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    I admit I don't know alot about Peter White and I have purposefully steered away from learning about CBT but when Dr. Klimas, Dr. Friedman, Dr. Jason, Dr. Natelson and other doctors state that when behavioral therapies done correctly are often helpful in improving one's quality of life - then I definitely do listen and I do trust them. It also helps that my personal experience with Guptas amydala training, a course called the EST training that I did many years ago, meditation and other activities have indeed been VERY helpful to me. Notwithstanding the fact that I still can't exercise they have definitely improved my quality of life. I defended the CAA's decision to put all sides of the equation on their treatment brochure and I still do.

    First of all please don't paint me as 'echoing' something the CDC says. I'm not echoing anything the CDC says and its unfair to put me in that context. I would note that Dr. Cheney, Dr. Bell, Dr. Klimas and other professionals (as well as myself) are members of the Fair Name Campaign and do not support trying to carve out ME from CFS. They unanimously thought that was a bad idea. I believe the attempt to differentiate myalgic encephalomyelitis from CFS is doomed to failure and a waste of time. They (and I) believe CFS should be referred to as ME/CFS.

    Certainly some recognition of the problems that bad exercise programs have caused should be forthcoming but those not the exercise programs that I or Dr. Bateman or the CAA or Staci Stevens or even Dr. Lloyd advocate. No one should be destroyed by 'careful exercise' programs because they preclude exercise that increases ones symptoms. Given the fact that both Staci Stevens - who should know -and Dr. Friedman state that most ME/CFS patients are doing TOO MUCH more recognition should certainly be placed on that fact. Of course knowledgeable practitioners include both exercise programs and envelope training - they should go hand in hand.

    I think there's probably some real learning to do on my part and the CAA's part on Peter White. Tom did show me some awful statements Dr. White made. It was probably (certainly?) a bad idea to include him in that pamphlet.


    Teejkay was objecting to the CAA mentioning some of the treatments (acupuncture) that didn't help her at all. But I know of people who have been helped by acupuncture. I know people who've helped by herbs. Just because she hasn't been helped by those treatments doesn't mean they shouldn't belong in the brochure - that was where I was coming from.

    I ought to know too. I had this for decades - which suggests that they're not very good at treating it. :)

    No I wasn't but it does bring up the point that more has to be made of the fact that most people are doing too much as it is and more emphasis should be put on envelope therapy - a good point. It was Gupta's amygdala retraining technique that convinced me that I should do substantially LESS physical activity.

    Maybe Peter White does believe ME/CFS is a psychosomatic delusion. I don't know but saying that his short piece makes the CAA into a existential joke means relegates Dr. Peterson, Dr. Klimas and all the other physicians on that brochure - who believe CFS is an real disorder - to meaninglessness. To turn the CAA into an 'existential joke' because you disagree with one section of their pamphlet doesn't make sense.

    Sure the CAA should have more recognition of the problems in the UK but almost all - in fact ALL the well known physicians that treat this disorder in the US that I can think of (Peterson, Cheney, Klimas, Bateman, Enlander, etc.) - treat this as a legitimate, physiologically based disorder. And the vast amount of the CAA's literature on CFS (as well as their research program) is devoted to that interpretation of CFS.

    Of course by saying this you're ignoring all the efforts by the CAA on the contrary including their highlighting of Dr. Peterson's work ('Man of Steel'), their many, many articles of physiological abnormalities in this disease -and their stellar research program that brought forth the metabolic dysfunction in this disorder, that uncovered endogenous retroviruses lthat may be at work, that is elucidating brain mitochondrial dysfunction in this disorder, that is uncovering the vascular dysfunction that may be present. Maybe those aren't important to you but they are very important to me and they override problems with Dr. White's blurb or the CAA's former work the CDC on the CME package.

    So what is the ultimate outcome of your inability to see the big picture here? Of your unremitting focus on the few scattered mistakes that you're using to portray this organization. All that other good work - which we desperately need disappears - sacrificed on your altar of correctness. Yes, the CAA probably did make mistakes and Peter White was the wrong person to have on that brochure and Dr. Klimas probably should note more that lots of people need to start doing less (she actually does frequently!) but the best way to deal with that is through education not withdrawl. Its always easier to demonize or paint a black and white picture but its not accurate. The CAA cannot be summed up by Dr. Whites little blurb on that photo or the fact that they participated in the CDC's CME program or X, Y or Z.

    Looks like some good education. I have a feeling that the CAA will NOT be putting Peter Whites picture on anything anytime soo.
  12. valia

    valia Senior Member

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    OMG!!! Court you come across like a lawyer arguing the case of a guilty man.

    You can twist it and turn it anyway but facts are facts, for Gods sake if you care about anyone here tell it as it is.

    And BTW I am sure you know everything there is to know about Peter White, in your position how could you not?
  13. Samuel

    Samuel Bedbound with NO DOCTOR

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    Why did they have to be told?
  14. Martlet

    Martlet Senior Member

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    I'm actually English, Valia and have grown up daughters and grandkids in the UK, but even if that was not the case, I would never shrug off mistreatment of another.

    I honestly do know. I was fortunate in that I was diagnosed on a US Air Force base in England ... although the first doctor I saw there was English and he was very good. But I didn't live on the base and the support group that I started (with Action For ME) was in Suffolk, so I was already hearing horror stories within weeks of being diagnosed - and believe me, I knew then and still know how very blessed I was in my doctors. I am not in any way minimising what is happening to people, but my feeling is that CAA's pamphlet is not what's at fault here, so much as bad doctors who may well only take from it what they want. But I still don't see how CAA - or anyone else - can completely ignore CBT/GET when all those who have dedicated their lives - and risked their reputations - on our behalf recommend it with certain qualifications.
  15. Cort

    Cort Phoenix Rising Founder

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    I absolutely do not know alot about Peter White! I only have so much time. I've avoided CBT like the plague - note there are no articles on it on my website. Note that there are alot of articles on other things.

    What facts are you talking about? The CAA made a mistake by using Peter White to state anything about CBT. I on the other hand do not believe that they should ignore CBT. My problem is in attempts to color the entire organization because of that mistake or even a couple of mistakes. Thats not good for any of us.

    What facts specifically are you talking about?

    Because they're a small organization. Because they, like everyone else, makes mistakes. Because their clientele is in the US not the UK and because contrary to the UK most of the research in the US has never gone for behavioral studies.
  16. valia

    valia Senior Member

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    I don't know where you are coming from, perhaps I am naturally suspicious of anyone who is defending an organisation rather than the patients.

    I am so tired now I can barely think, I just want to say that the only ones here that don't have an agenda are us the patients/sufferers.

    If something was working for us we would not be complaining, I thought this forum/group was here for our defence, increasingly I am being persuaded that it is for the defence of the CAA.

    I really don't want to argue anymore about this, in my opinion the CAA is already sunk to us, we/you can no longer depend on them for any real support (they have sold out, I'm sure Cort will have something to say about that) I have seen it happen in the UK with our so called support groups/charities.

    I would like to see this group mounting all of their efforts to fighting for themselves and not defending CAA or any other, forget them they have done nothing for you, nor ever will, their positions are dependent on you staying exactly where you are now.
  17. Cort

    Cort Phoenix Rising Founder

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    Thanks - I know where you're coming from.

    Its as a patient that I'm urging that the good that the CAA does gets across as well. I'm concerned that that aspect of the organization does not get across much. Because I'm excited at some of the things that they are currently doing I definitely don't want that organization to go down. I want them to thrive - and adjust. I'm glad that Board Members are interested and listening to the patient community.

    I could go on and on about this
    which I think is an amazing statement but I won't. Suffice it to say that I agree that having Peter White up there was a real boner and that the organization has things to work on.
  18. valia

    valia Senior Member

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    For goodness sake, this was NO MISTAKE this was designed, engineered whatever you want to call it this is the beginning of the Psych takeover, don't pretend that you don't know, you are promoting it.

    And hey! ban me if you want to I really don't care, I am surprised every morning when I wake up, not having expected to, so nothing much phases me.

    Unfortunately I am not well enough, but my only concern is to try to inform others.
  19. Cort

    Cort Phoenix Rising Founder

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    We're really not into banning here :).

    I think if you'll look at the CAA's research program, though, you'll really feel better about how things are going.
  20. Samuel

    Samuel Bedbound with NO DOCTOR

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    Linguists have discovered a new tense in English. It is called the past passive exonerative. "Mistakes were made".

    The following search does not strike me as requiring resources beyond the capacity of the CAA to perform. Why would it be?

    http://www.google.com/search?hl=en&safe=off&num=100&ie=UTF-8&oe=UTF-8&q=cfs peter white&btnG=Search

    Can you please explain the logic behind your last sentence?

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