ME/CFS: A disease at war with itself
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The CAA Pamphlet to Educate Doctors

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

  1. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US

    If I were you, before showing this pamphlet to any physician, I would take a pair of scissors and snip out the section written by Peter White, the British psychiatrist who works closely with Simon Wessely.

    Then I would take a pen and put an asterisk next to every mention of "CBT" and "GET". At the bottom of the page, by another asterisk, write in the above Warning and/or Disclaimer--or make up your own, if you choose.

    The majority of posters on this thread feel that, rather than catering only to the mildly affected, the CAA needs to write materials that reflect the broad spectrum of severity experienced by PWCs.

    Thanks to Cort and the other administrators of this website, we severe patients finally have a forum for being heard. We tend to be underrepresented at doctors' offices because it's difficult for us to leave our homes. (In fact, two of my friends who are bedbound are completely unable to travel and get minimal healthcare from doctors who are willing to make housecalls.)

    But it's not only severe patients who are deeply concerned by the endorsements in the CAA materials. Some who are mildly ill or even in remission have posted they feel strongly that the CAA's emphasis on cognitive-behavioral and exercise regimens sends the wrong message to doctors about the etiologies of this illness.

    We will continue raising our voices until the CAA changes its positions to include us, a large portion of the patients it ostensibly represents. As Teej put it so eloquently, if you let the CAA exclude us now, you may find they are excluding you tomorrow.

    The CAA should immediately act upon the requests made by Samuel and Dr. Yes above.
  2. Robin

    Robin Guest

    Poet in SF, I'm glad that CBT/GET works for you. However, many people have stated over and over that such programs have harmed them. Please take this into consideration, and try to make your points without resorting to personal attacks. Thanks.
  3. Advocate

    Advocate Senior Member


    I am trying to understand your position. I gather from your post that you are categorically opposed to:

    • Tests for the retrovirus XMRV
    • Magnetic Resonance Imaging
    • LPs--whatever they are

    You also suggest that a doctor who orders any of the above tests for a severely ill patient and who fails to instead order CBT/GET is a quack (your word) who overcharges.

    In addition, you suggest that:

    •Teejkay clamors.
    •Teejkay is selfish.
    •Teejkay has a grudge.
    •Teejkay is very powerful, and can prevent people who need CBT/GET from obtaining it.
    •Teejkay is free to stay sick for the next 25 years due to not following your recommendations.
  4. kurt

    kurt Senior Member

    This thread has shown me something, that due to the complexity of ME/CFS, people on each side of the pond have gained different types of expertise. In other words, people in the UK know a LOT more about the risks of exercise than people in the US. And people in the US probably know more about some of the risks of biologically-based treatments. This difference seems to regularly turn into conflict. I suppose there is probably nothing I can say to stop that, but just want to make this observation. We really need to learn from each other. I think many of the PWC in the US who have benefited from GET may not appreciate that they may be setting themselves up for a far worse crash than they ever have experienced before. I happen to be someone in the US who has experienced that, a form of GET combined with sauna/jacuzzi therapy gave me a nearly two year remission, it was wonderful, I went back to work, etc. But it did not really halt the progression of my CFS, in fact may have made me more vulnerable in some ways to the eventual crash. Then there is the other side, people in the UK keep suggesting that they are being denied some of the valuable biological therapies available in the US. Well have I got news for them, just like the UK experiences with GET and CBT, these biological therapies in the US are pretty dangerous, some have caused heart attacks and death. The problem is that no doctors anywhere seem to have broken the code of CFS.

    There may be people who really do benefit from GET, perhaps those who are above 50 on Bell's scale? But I think they are playing with fire. There are some unidentified issues in ME/CFS that seem to make pretty much any therapy somewhat of a risk for a given patient.

    What to do about CAA's brochure? I think it needs to be revised to be more even-handed. If they want to present info on GET (Dr Lapp) or CBT, fine, but after quoting the studies supporting those therapies they need to also quote the studies that show the harm that can be caused. And their conclusion should be that the practitioner needs to carefully monitor any therapy like this as we do not have many answers yet. "One person's medicine is another person's poison" seems to apply well to ME/CFS.

    What to do about all the arguments here? Everyone needs to try to put themselves in the opponent's shoes. The grass is really not much greener on either side of the pond.
  5. PoetInSF

    PoetInSF Senior Member

    No problem, I fully understand the apprehension. What I object, and you'd realize if you read carefully what teejkay has written, is insistence to remove what has proven to work for some patients, and insinuation that those of us who doesn't speak against CBT/GET Nazis are apathetic.

    Yes, absolutely. As for CBT/GET, I still believe there is nothing much your doctor can do for you at the moment other than palliative care and offer *guidance* for CBT/GET. It has to be done very carefully, and that's all the more reason to educate clinicians.
  6. PoetInSF

    PoetInSF Senior Member

    I doubt it, unless ME is something entirely different from CFS. We on this side of the pond are also acutely aware of post exertional sickness as *the* problem. The real difference, I think, is the healthcare system. In UK, it's run by the NHS and NICE with taxpayer's money, and they appear to be more militant about "forcing" "proven" treatment on patients. I'm guessing that is why ME patients object to CBT/GET more violently.
  7. valia

    valia Senior Member

    I recall a few posts some time back where people here were concerned that the most severely affected would prove to be XMRV positive and the rest would be left behind in the CFS dustbin as it were, they were reassured that we are all in this together etc.....

    Now because a few believe this so called “PROVEN” treatment GET has been helpful to them, they are quite content that it should be forced (as it would be) on to severely affected people that it would most definitely not help and probably do untold harm.
  8. Robin

    Robin Guest

    Poet, I did read TJ's post carefully. :) This is an open forum and her point of view is just as welcome as yours. However, it's important to voice your objection without a personal attack. That's all we ask.

    Valia, Advocate, I understand both of your arguments, but, please be cautious with your tone.

    CBT/GET is an emotional issue that has been very explosive in the past on this forum. I ask everyone to please review the forums rules and post carefully and with civility on this very delicate topic. This is an important thread and many people are reading it.

  9. I second Robin.

    When I make an argument and I want to make it powerfully, I make it general or I tell a story.
    Directing flaming arrows at one person because they cannot see your point of view, serves to alienate that person and turns others against you as well.

    I once read a psychological study whose results suggested that when people overhear a person talking about somebody else, they attribute any negative points to the speaker rather than the person being talked about. So if I said "Person X is ugly" what listeners hear is that I am ugly. It's one of those weird quirks of human psychology that I struggle to remember when I am angry, ooops.

    Rachel xx
  10. PoetInSF

    PoetInSF Senior Member

    Understood. It was a reaction to comparison of those with different opinion on CBT/GET to nazi pacifists. I'll rein in.

    One thing that caught my eye was the claim that SSA withhold disability payment to those who refuse CBT/GET. (Since teejkay is from the Bay Area, I assume it is SSA). I'm pretty sure that it is not that case. If it is, I'd be the first one to contact Pelosi/Feinstein/Boxer. (Some cancer patients walk away from chemotherapy, CFS patients should be allowed to refuse exercise therapy given the post-exertional nature of the sickness.) I'm afraid throwing that kind of unverified and inflammatory accusation against the system to bolster your campaign is counter productive.
  11. Hope123

    Hope123 Senior Member

    To each his/her own

    I haven't read this whole entire thread -- too long - but I did read the beginning and PoetinSF's comments and felt that Poet was not treating Teejkay or many of us fairly. Poet, your individual experience is your individual experience but don't extrapolate it to other people's.

    I'm interested in stats so I look for data aside from people's individual experiences. In the US, because CFS has been ignored by the CDC, we have relatively little to go other than anecdotes. Someone sent me the AFME 2008 survey in the UK which survey over 2,500 people with ME/CFS. Although I am aware that people in the UK have good/bad views of AFME, this is the largest survey of ME/CFS sufferes I have come across (please tell me if there is a bigger one) and some of the data may be of interest to US ME/CFS sufferers since there is no equivalent data on us.

    Of note, 50% of people said GET was helpful BUT 34% of people said it made them worse and 21% noted no change. 34% is not a small number - that's one out of three people made worse by GET. Also 24% of those surveyed no longer saw their family doc because they were too ill. 25% is not a small number. So all clinic-based studies are seeing a select group of people already. Summary Report 2008.pdf

    If anyone from the CAA is still reading this, please consider doing a similar survey in the US.
  12. Robin

    Robin Guest

    She was referring to a different forum member who currently is enrolled in a CBT program on behalf of her private disability insurance company. She was told that participation is voluntary, but if she refuses her payments may be cut.
  13. jspotila

    jspotila Senior Member

    Yes, of course we are still reading! The most recent survey the Association did asked people about various aspects of daily life, but not treatments specifically. I agree that a treatment survey would be very interesting for a number of reasons.
  14. Hope123

    Hope123 Senior Member

    Thanks for answering jspotila! I'm glad you're following this thread. Yes, I have read the survey results that the CAA has put out (this one and the ones about symptoms and onset period). The UK survey is interesting because it includes questions about if people are or have ever been housebound/ homebound. I think this is important because it gets at the severity of the illness.

    I don't know if CAA has compared their findiings to the UK - there are some interesting differences, like how 60% of UK sufferers had their onset before the age of 40 vs. the older age of onset in the CAA survey from eyeballing the numbers. I have my suspicions that the average age of onset is younger than the 40-50 quoted by the CDC.

    Finally, I don't know whether or how CAA figures have been conveyed to the US federal gov't. I've reviewed a few CFSAC meetings and these type of issues aren't brought out very much. I understand CAA is limited by funding and staff. But like last year, when they held a briefing for congressional reps, the press release was too late for me and others in my support group to contact our reps to attend.

    (Sorry for hijacking the thread.)
  15. jackie

    jackie Senior Member

    You'd be surprised how intimidated you can feel when you're very ill and desperate!

    I was awarded permanent disability (SSDI)some years ago...but while I was waiting for my case to be reviewed, myPrimary Care Doctor told me that my Insurance Co. wanted me to be sent to a "Pain Control Clinic' for evaluation and treatment.

    It turned out to be a brand new clininc run by an Anesthesiologist. I had no idea what that would entail...but I soon found out!

    The "treatment" proposed was several months of Radio Frequency Thermal Coagulation along with Epidurals. I knew right away that I would prefer not to do this...but I was told that my "reluctance" to participate would be viewed as a reluctance to get well and might reflect negatively on my SSDI decision.

    It was a horribly painful experience - for me, anyway. After each "session" the doctor would quiz me (although most of the time I was too groggy to give a rational answer) as to the effects of his work.

    I discovered later when I had my records pulled that after each procedure he would write that I was 80% cured/95% cured and so forth! He needed my "positive" outcome to promote his new business!

    I really was traumatized by this experience and truly believed that I had no choice but to comply. I know that many people have success with RFA...but I did not, and after about 10 procedures (the last one donewith the sedative/iv pain meds withheld..if you can imagine that!) I said no more.

    In fact, it took several years (during which I had nightmares!) before I was able to "jokingly" refer to this man as Dr. Marquis De Sade!

    I was never threatened, and this is not the same as CBT/GET...AND I probably would have been awarded my disability anyway...but I was so vulnerable and I was taken advantage of, physically hurt, and emotionally traumatized. I would certainly hate to be in a similar situatuion again with enforced "therapy" - of ANY kind!

    I was TOLD that RFA would NOT HURT me...and this wasn't the case. I can only imagine what it would feel like to be MADE to participate (once more) in ANY activity/treatment/procedure that I felt my body could not handle....or risk losing my meager ssd check!

    jackie (no smilie tonight.......)
  16. IamME

    IamME Too sick for an identity

    IIRC a survey by the 25% Severe ME group found 95% had been made worse by CBT/GET. The huge variance between this figure and the figure AfME gives for its severe respondents can tell you something! It's in keeping with AfME being an astroturf charity that promotes CBT/GET at every turn (even asking for more CBT therapists and promoting/listenign to Peter White) and lies to it's beneficieries or whatever it calls them about CBT being widely used in cancer treatment(!) AfME long ago gave up being an ME charity can became an all "chronic fatigue" charity and of course people in the UK are given "ME/CFS" as a dustbin diagnosis now, which might take on greater diagnostic relevence the less severe sufferers are.

    And unlike a classic ME definition which is rarely used any more, or the Canadian, the Fukuda definition states exercise intolerance is optional.

    AfME/AYME et al also make the bizarre claim that vast hordes of re-exposure trained CBT therapists are simply too imcompetent at their job rather than admit that the overwhelming negative patient response to exercise is because graded exposure to exercise is contraindicated in ME.

    An American survey from years back, sorry can't recall who did it, found rest (or maybe "pacing") was very high up for positive, not sure if it included exercise. It also rated B12 highly I remember.

    You also have to consider all the deviousness going on, ie. GET is sometimes not really GET but simply "rearranged" activity, sometimes, in fact often now in the UK, pacing means "GET lite" (sometimes "adaptive pacing") which is what the NICE guidelines offered and what the so-called PACE Trial is doing. This trial excludes all severely affected sufferers, as do all the GET RCTs (they usually exclude any signs of disease anyway). And some patients have a remission but in their own attribution bias can't accept it being outside their control so take the credit for it, or aren't aware remissions/fluctuations are sometimes possible.

    It is hard to take any arguments for GET/CBT seriously (other than the harm promotion does of course) when ME is being lumped in with an artificially heterogenous range of illnesses and when fundamental needs are often being ignored meaning many will never know the comfort zone that is assumed to exist before even thinking of starting an exercise regime. You can't rebuild a ruined wall by changing the wallpaper, much less "toughen it up" by piling pressure on it.

    I would like to know how there can be a biological possibility of alleviating the many muscl-, heart, immune, neuro, metabolic, pathologies related to exertion by simply piling on more exertion, unless you conisder them "maintained" by deconidtioning, which is the pavlovian, psychosomatic model. There is no way in hell that anywhere near 50% of people with genuine ME can benefit from GET - it's diagnostically and technically inconsistent.

    Add that to the fact the worst cases get the least advocacy and medical attention and are the most vulnerable, it's unethical to give people who CAN safely exercise anywhere the same attention. Lynne Gilderdale got that way through exercise, how sick are the could-increase-exercise-but-wonts? People who cannot safely exercise are always more seriously ill than those who can.

    So yes, calling failure to criticise CBT/GET "apathy" is if anything, overly generous.
  17. starryeyes

    starryeyes Senior Member

    Bay Area, California
    IamME - thanks for explaining that. I've heard some of that before but it's been a long time. That really shows what we're up against!

    (((((((((((((jackie))))))))))))))) I am so sorry to hear of that torture you were put through. Your story is very important. I feel such rage and compassion about it. Big :hug: No one should have to go through what you did. Were you in California when that happened to you?

  18. jackie

    jackie Senior Member

    Hi Teej! Thanks..I'd almost forgotten just how awful that experience was until I started to recall the whole thing to type my post...I could barely write it out!

    I consider myself pretty tough (especially since I've lived with chronic pain for many years - and it's my most difficult symptom to treat!). But I've NEVER felt pain like that (the closest I ever want to get to true torture!)

    I've been reluctant to talk about it - as I don't like reading of OTHER peoples bad experiences with a treatment, as though that is the only outcome possible. RFTC is used most often for Facet Arthropathy with mixed results. But I don't have FA...I have ME/CFS/FM... and yet I didn't feel that I had a choice in the matter.

    Sadder but wiser...I can assure you that I've become a BIT more proactive now!

    In the hands of an experienced and competent doctor (AND if I HAD the condition I was being treated for!) the result might be different....though still risky, IMO. I found an online forum for folks undergoing this same thing....and others talked of screaming through the procedure. One person who had a horrific experience like me wrote "God bless the Lady holding my hand!" I could have cried reading that as I remember saying the same thing to my family when they took me home after my last session!

    I recently read of studies warning of the risks (NEUROTOXICITY) of the preservatives used and calling for ways of reducing or eliminating PEG's (Polyethylene Glycol - this SOUNDS like antifreeze!) as this, along with the corticosteroids (either intrathecally or epidurally) can actually cause a severe dibilitating disease called Arachnoiditis. ARACHNOIDITIS is a Neuropathic disease caused by inflammation of the Arachnoid - the membrane that surrounds and protects the CNS - the brain and spinal cord.

    Arachnoiditis has no cure, is difficult to diagnose AND the only treatment possible to alleviate the intense pain is to use the very components that may have CAUSED it! I also read that "Thalidomide" is being investigated as a treatment!:eek:

    If you're not familar with RFTC (using Radiowaves and Heat to destroy the nerves)...the tip of a special needle (guided by x-ray) is inserted into the Facet Joint (either Cervical, Thoracic or Lumbar...I had Thoracic and Lumbar regions done), and the nerves are "coagulated".

    They generally do a trial run first (using an epidural) in the area they want to eventually see if you experience numbing in the right place. Then a few weeks later you go back and they go to the same spot and fry the nerves.

    In my case (and not knowing how it should have been done) I was brought back (each time) in just a few days to finish each facet joint...I did this 8 times! We were lined up in pre-op like cattle! Because the staff was ignorant of the special problems PWCs have with meds, surgeries etc. I reacted badly to the anesthesia (difficult to wake me up and hr/bp dropped too low).

    In fact, I reacted to the versed and was too sedated (but not painfree) to say if the procedure had worked - so the doctor kept reducing the sedation/pain meds each time until NOTHING was used at the last one!

    I also reacted to the steroids, of course! (I had the typical steroid moon face! and gained a lot of weight during the following months)

    These "treatments" were done in the first two years of my illness and I'm sure that it exacerbated the me/cfs...I've never been "ok" since then. I signed away my rights in order to have the procedures done. Although I was a novice (new to having a disease and being so ill)..I know I should have "known better", but I really was intimidated and feared losing my bid for SSDI, so I dutifully complied. I was so fearful and traumatized that I'd throw up before leaving to go to the hospital each time...and yet I went!

    The point of my story is to say that these things CAN and do happen! My experience with this is why I'm so sympathetic to the plight of the UK'ers (and also those here and around the world being forced into potentially damaging treatments). In the UK they have a "Section 8", right? Is that like our 72-hour psychiatric hold...but indefinite?

    Just IMAGINE being taken from your family...your pets, maybe and into a locked ward...simply because you wanted some CHOICE as to your treatment?

    It's difficult to think that it could happen here...but if recommendations aren't amended is it really so far off?

    My blood runs cold thinking of what could happen to ALL of us...if guidelines aren't UPDATED to reflect current knowledge of ME/CFS.

    I wish I could be a more articulate advocate for reforming and adding disclaimers (for example) to our CBT/GET guidelines/pamphlets etc., but due to my understandably fried brain...I must leave the advocacy for others.

    jackie (STILL scared in California!):(
  19. MEKoan

    MEKoan Senior Member

    Dear Jackie,

    Words fail me.

    I'm so sorry!
  20. beckster


    Yikes, sorry!
    One think i dont understand Jackie is, being in the states, you had ssdi, not private insurance, and yet you said your private insurance made you do this. What year was this. I hadnt heard of this being done here. WAs it a pilot program or something like that?

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