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

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

  1. kerrilyn

    kerrilyn Senior Member

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    Thanks CBS and Jspotila for those links, lots of interesting research material. I appreciate it.

    Again, I don't want to offend anyone or cause conflict, but that program I mentioned attending included a CBT component too. I'm just presenting what was involved from my experience personally. Note again: it was for FM patients not CFS, and it was a multidiscipline program.

    I really was the type of patient that Tina referred to. I walked into that program thinking that I was going to be cured, that I could go back to work and I was in a dangerous push/crash cycle. The psychiatrists associated with the program did not think I was ill because I was depressed. They taught me that I needed to do less to avoid a crash and to actually come to terms and admit that I was much sicker than I allowed myself to believe. The OT taught that me that my tolerances for standing and activity were much less than I realized. The social worker helped me file disability claims, once she convinced me that I was legitimately disabled and eligible. They were prepared to take on other doctors who doubted the validity of the illness. So from that standpoint I'm grateful I went through the program because I did learn some things and was given help that I otherwise didn't have.

    Obviously I didn't fair well on the GET portion, and I can't see how CFS patients would. Ideally the staff should realize there are other co-existing conditions (not just linked to arthritis) to consider. That program did incorporate councelling techniques and 'pacing' too, in many ways that was the main focus of the CBT part, but there was also information presented to challenging false beliefs. If I didn't think a good part of it pertained to me directly, I tend to tune out so there are parts I don't remember. I still have notes/books somewhere, I'll have to look through them again and see just what kind of things were being 'taught'.

    I can see both pros and cons for a program I went through and it depends greatly on the atmosphere in which it is presented. And I think it is much more a grey/controversial area to use this type of program for CFS than it is for FM. There are also Work Hardening programs here that I have heard about and those focus on 'toughening' the person up to get them back to work. I bet those are pure evil.

    Also please note: Incase I didn't make it clear, the program I attended focused on trying to control/manage symptoms, not treatment.
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, many valid points being made.

    I think one of the issues is the main difference between US and UK. I have been to nine doctors. None of them advised CBT. One did advise the Klimas rule of body activity, one minute of activity, three minutes of total rest, etc. (Body activity being as little as stretching in bed, if that is all you can do.) And again, only one minute first time. I guess this would be GET. But I do not consider this harmful. The emphasis being on pacing. I was never urged to do more that I felt I could.

    I did have one doctor diagnose me with depression. But his answer for that was anti-depressants. He called back a week later with a finding of hypothyroidism.

    Again, no CBT. But it does seem to be the standard in UK. And I guess then, it depends on the belief of that therapist as to whether they believe you are suffering from exercise phobia or if you are truly sick. I am truly sorry for what you are going through in UK.

    Also, at this time, increasing body activity is recommended for FM (although I question that, it is accepted), but pacing and rest is more important in CFS. Problem is that doctors more readily diagnose FM than CFS, and many have both or are misdiagnosed with FM when they actually have CFS.

    Tina
     
  3. oerganix

    oerganix Senior Member

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    And the silence was deafening!

    Perhaps an answer here?:

    "4.Dr Eleanor Stein

    A close read of the literature reveals that none of the core symptoms
    of ME/CFS improve with CBT or GET."

    http://www.investinme.org/Article-36...JR%20Feb09.htm

    This is #4 on the list of "101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients", as posted by islandfinn at
    http://forums.aboutmecfs.org/showth...-to-provide-CBT-and-GET-to-ME-Patients-Part-1

    CAA, if you have any compassion at all, please read the first person accounts of how the psych lobby has harmed patients with ME/CFS with this cruel practice. Any positive reference to this practice has NO place in what purports to be an organization advocating for CFS patients. It was produced by the psych lobby, is supported by the psych lobby and is contrary to educating anyone, doctors, patients, the public, about the cause(s) or treatment of CFIDS.
     
  4. CBS

    CBS Senior Member

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    Oerganix,

    There is a simple explanation for the silence. CBT and GET are not defensible as 'treatments' for CFS. No matter how many ways in which you qualify and reconstruct CBT at it's core it is about 'erroneous illness beliefs.' The only erroneous beliefs are that on a good day I might be able to make it to the grocery store and the bank drive through without initiating a crash that lays me out the following day. Within the field of psychology, difficulty in dealing with these types of limitations calls for counseling for adjustment issues. Anyone that would construe that as CBT ought to have their license pulled.

    The same need to so dramatically over qualify the appropriate circumstances and credentials needed to apply GET to CFS patients renders the recommendation impotent at best and much more likely, dangerous.

    These are points that the CAA needs to address. Some of my questions to Kim McKleary concerned the ability to donate to the CAA and have that donation directed to research and not physician education. I also suggested that the very serious and legitimate concerns of patients regarding the continued advocacy of CBT and GET by the CAA were a significant roadblock to gaining wide based support for the CAA's exemplary research program.

    The seriousness of the message sent by the CAA's research program is at odds with what I personally consider to be a laxness in the precision, accuracy and therefore usefulness/safety of the guidelines for physical activity and psychological support in the CAA's physician education materials.

    The message you are trying to get across is important and in supporting the CAA's research efforts it is not my intent to minimize the real and urgent need for further changes to the materials that the CAA is providing to those upon whom we depend for care.

    It is my personal belief that however well intentioned, the CAA's involvement with the CDC and Bill Reeves was a significant error. Now that Reeves is no longer overseeing the CDC's CFS program, the CAA is presented with an opportunity to make much needed and well thought out changes to all the messages they convey. I'll be watching these areas that impact our every interaction with the medical community very closely over the next several months.
     
  5. oerganix

    oerganix Senior Member

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    Yes, CBS, I know why the silence was deafening. It was a rhetorical question in the first place, in the earlier context of the CAA representative and others defending the place of GET and CBT in the CAA doctor's pamphlet. I quoted one phrase from that, something to the effect that GET does not alleviate ALL symptoms of CFS, inferring that it alleviates SOME symptoms. So, my rhetorical question provided them an opportunity to tell me just which symptoms are alleviated by talk therapy and exercise. I already knew that it doesn't alleviate ANY of them, unless one believes that one of the symptoms of CFS is "illness beliefs" etc.

    I think you and I are essentially in agreement, except for the donation issue. I don't think we should give any donations to any organization that gives any support to the psychiatric explanations for CFS, and that, in my opinion, is exactly what GET/CBT does. It's a distraction from research and treatment of the real, physical causes, a smoke screen, a muddying of the waters, and I won't cooperate with that.

    I also understand your position that CAA does more good than harm. I just don't agree. Any research they are supporting is a future benefit while the harm that GET/CBT causes is a present and potentially fatal harm. If they are as 'on top of it' as they should be and claim to be, they should be aware of this and thus have no excuses for continuing to 'educate' doctors in favor of this. As reasonable people, we can disagree. Best wishes to you.
     
  6. jspotila

    jspotila Senior Member

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    No need to shout, Wildaisy, I am reading this thread and the Association is aware of everyone's input here. The Association is doing its best within all the limitations (contract, resources, etc), and I appreciate the willingness of some participants to evaluate developments over time. I don't think I can say anything more on this thread that I have not already said several times.
     
  7. CBS

    CBS Senior Member

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    Oerganix,

    I very appreciate your insight and stance on these issues. I underlined one sentence in your post that I would like to expand upon. The harm that is done by promoting CBT and GET is real and immediate and in that sense I am not convinced that at this point in time the CAA does more good than harm. What I do know is that the CAA's research program holds a great deal of potential and after years of being a CAA detractor I am seeing important changes. I have not yet seen enough to be convinced that the patient community can relent on issues such as CBT and GET.

    We must continue to push the CAA (and all other groups assuming the mantle of CFS patient advocacy) to carefully consider their every impact on the entire range of patients. I have also communicated directly with several CAA officials and feel comfortable that their motives are in line with the rest of the CFS community. I'm willing to give them a bit more time to address the issues of CBT and GET (and I am sure that over time other issues will arise) but my support is not indefinite.

    Because of the significant contributions of their research program and the directness with which I have been able to communicate with CAA representatives (and my appreciation for their willingness to do so), I am guardedly optimistic that if both you and I continue to send a strong message to all advocacy groups that CBT and GET have no place in CFS, that this serious error, propagated by many, will soon be a relic of a bygone era.
     
  8. oerganix

    oerganix Senior Member

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    CBS, thank you for your work on this and for your civil discourse with me. I guess for both of us the bottom line is this:

    Actions speak louder than words. We await the action.

    You have those assurances, and thanks for sharing them. I, too , hope that 'relic' will soon be bygone. It should never have been.
     
  9. CBS

    CBS Senior Member

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    Oerganix, Thank you as well. I am anxiously waiting what never should have been.
     
  10. CBS

    CBS Senior Member

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    jspotilla,

    Please don't take this as an critisism of the CAA's motives or effort. I know the CAA looks a lot bigger form the outside than it is and I know that there have been recent cuts in staff. However, as you have acknowledged (and I very much appreciate your involvement on these boards and Kim McKleary's candid response to my questions), this is an extremely important issue and overworked, well meaning but misinformed doctors are harming CFS patients every single day. I know that there are other constraining factors (contracts and resources - perhpas a bit ironic) but I would urge the CAA to make addressing the CBT/GET concerns a publicly stated priority as I am convinvced that this is one of, if not THE, major impediments to stronger financial support for the CAA from the CFS patient community.

    My sincere thanks to you, Kim McKleary, Dr. Vernon and the CAA for all that you are trying to accomplish.
     
  11. jspotila

    jspotila Senior Member

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    And I thank you, CBS, and everyone else on these boards who continues to engage in CFS advocacy efforts. I am a strong believer in respectful dialogue and discussion as the best (but not easiest) way to make decisions and move forward.
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Have the fake patient accounts been removed yet?

    Tina
     
  13. oerganix

    oerganix Senior Member

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    A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET)
    in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS):

    CBT/GET is not only ineffective and not evidence-based,
    but also potentially harmful for many patients with ME/CFS.
    Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299. [Epub ahead of print]
    Twisk FNM *, Maes M.
    [snip]
    Moreover, this review shows that exertion and thus GET
    most likely have a negative impact on many ME/CFS patients.
     
  14. Samuel

    Samuel Bedbound with NO DOCTOR

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    By the way

    You may be worried that any increase in exercise or
    physical activity could make your condition worse. Be
    reassured research has shown that a guided, gradual
    exercise programme can help people who suffer from CFS/ME
    without causing ill effects.

    In the US, the word is written as "program". In the UK, it is
    "programme". Also note the "CFS/ME".
     
  15. Orla

    Orla Senior Member

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    :D Yes! CBT is for mental health and behavioural problems. It is not really a mental health problem to want to be able to get through the day and do some basic tasks, or to want to participate a bit in society. These things are all necessary both for survival (e.g. food shopping, paying bills) and socialising (I am using the term losely, meaning any social contact) is a fundamental part of being human.

    I remember a teacher of mine used to say a lot (I'm not sure why she used to bang on about this to be honest!) "human beings are social animals" I didn't get it at the time. It was only when I became this isolated that I suddenly realised the deep truth of that statement.

    Of course people have to learn to adjust and basically get used to the isolation etc. but I think it would be overstating it (and frankling it would be insulting if it came from a healthy person without these problems) to characterise normal needs and wants as a pathological mental health problem.

    Orla
     
  16. oerganix

    oerganix Senior Member

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    Number 29 in 101 Reasons not to do GET/CBT

    29. Theresa L Heath

    “I undertook the course of CBT offered by King's College Hospital with
    an open mind and a degree of optimism. I finished the course feeling
    depressed and like a failure. I now view CBT as akin to other quack
    'therapies' such as the Lightening Process. Your recovery is in your
    hands. If you don't improve, you're a failure. My therapist seemed
    genuinely confused when I did not make any improvement, and in fact
    suffered my worst relapse to date whilst endeavouring, against my
    better instincts, to adhere to their GET and sleep programme. I
    completed the course doing less physical activity than when I had
    started, and feeling guilty for my own 'unhelpful illness beliefs'.
    CBT and GET taking up valuable funds

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738
     
  17. Orla

    Orla Senior Member

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    I think this is a very important point. The context in which things are being done is very important. So in a world where a common view is that ME/CFS is a behavioral and psychological problem, or where it is tempting and easy for the doctor to start blaming the patient for not getting better, then CBT could be a bit of a problem.

    Some of my concern would be about the impression medical people would get if they saw CBT recommended for ME/CFS.

    Personally I think counselling might be more value neutral in the impression it gives, and also in a way in what it does (not that I would want that as a cornerstone of "treatment" either). Anyone could go to counselling. One does not have to have a mental health problem as such to go to counselling. Other stategies could also be listed, if listing psychological support measures, such as supportive listening, education, and support groups. These are just the sort of thing that would be suggested for other medical diseases.

    The problem with CBT is that I think there is a good chance the minute a medical person would hear the phrase CBT, their brain would go to phobias, depression, maladaptive behaviours etc. (I only studied psychology for a year, a long time ago, and this is what springs into my head when I hear CBT). So in the medical person's head this could be what we would be lumped in with. I don't mean that in an offensive way to people with other condtions and problems. It is just that it is wrong and misleading to view ME/CFS medically as a mental health and behavioural problem.

    Another problem is that even a good, or potentialy good, CBT therapist, might be interested to see what other CBT therapists have said about ME/CFS. They might look up articles on CBT and ME/CFS. Most of the articles they would find would be awful, and they put out the view that ME/CFS is a mental health and behavioural problem. If they got this idea into their head it might be imposible to dislodge it, or dislodge it fully.

    Another problem with CBT is that the therapists might be a bit primed to be basically making judgements about the patient, because of the nature of the practice. I think they would be on the lookout for what they think are maladaptive/extreme/abnormal thinking and behaviours.

    The therapist might have methods helpful for people with phobias etc. but unhelpful for people with ME/CFS. For example they might be really into goal setting and making oneself do things. This might be useful if someone has a phobia or something, but if the ME/CFS client does not do their "homework" the therapist might read this as either resistence, lack of motivation, or that the client is still sticking to their bad habits and need to be pushed.

    But we know that an ME/CFS patient might not do something because they are too sick. This might be a very frequent occurence, so can look bad to the therapist as it looks like they are repeatedly avoiding things.

    A patient might also choose to leave dealing with some sort of stresseful problem until a later time, not because they are avoidant or lacking in motivation, but because they know that they don't have the energy to deal with it at a particular time. Another issue is that we are not as free as healthy people and cannot make the same "demands" for respect etc. as able bodied and independent people. So a person might have no real choice but to put up with some behaviours that are not ok, or not be able to tackle someone's bad behaviour so directly as they would like, purely because they are a bit dependent on someone for something.

    But the therapist might read all of this, perfectly reasonable behaviour (under the circumstances), as maladaptive and as evidence of resistance. I think they would often not be really able to tell, some of the time at least, whether the person was really too unwell to do something, in a bad social situation that couldn't be helped much, or just resistant to change. Personally I know I would have no concept of some of the difficulties of living with a severe chronic illness if I wasn't living it. Therapists are only human, and even if they are very good, and really making an effort, they might still misunderstand things or not "get" things.

    Another problem is that early stages patients will sometimes have unrealistic goals, or have goals based in an assumption that they will get better, or get better within a certain timeframe (not because they are stupid, but because they have been told they will get better). The Therapist might want to be "positive" so encourage this atttude and these goals. Far from helping them to adjust to their illness, the therapist could actually push the patient into more denial, discourage them from pacing etc.

    On a personal patient level though, it may not matter too much what "brand" of therapy a person does, if they get along with the therapist, and especially if the therapist accepts the physical reality of the condition. Often people just need someone to talk to outside of their immediate life, so if they find someone they can talk to this might be good enough for them personally.

    But what a patient does on a personal level to help themselves is a bit different to what we want, or don't want, advocated or publicised as a treatment for ME/CFS, epecially if it is going to end up as a cornerstone of the treatment a patient receives. Unfortunately because of the lack of physical treatments for ME/CFS doctors will often feel they need to suggest something, so might grasp at anything. In this context, it is easy for CBT to end up as the only, or main, treatment someone gets.

    Orla
     
  18. gracenote

    gracenote All shall be well . . .

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    Thank you Orla and Dr. Yes. You have expressed your views very well. I appreciate your clarity.
     
  19. Samuel

    Samuel Bedbound with NO DOCTOR

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    A resemblance to a women's magazine

    CAA literature, including their pamphlets for doctors, is a
    little like a women's magazine.

    To me, anyway.

    Lots of mainstream health advice (predominantly behavioral).
    Sidebars with smiling pictures of benevolent-looking doctors
    (offering predominantly behavioral advice). Advertorials,
    oh those those wonderful advertorials (for predominantly
    behavioral advice)! Product placement, unpaid or not (for
    predominantly behavioral therapies). Aimed at the large
    market.

    See inside for more. A bulleted personality makeover.
    Joint collaborations with the sponsors and experts (CDC and
    perhaps CBT/GET professional organizations?) who WANT TO
    HELP US. A hello from a friend on the other side of the
    Atlantic (those quirky Brits!). Fashion trends (in
    psychology). Are you going to be daring and wear the heels
    tonight?

    The only thing it lacks is the perfume inserts and the
    subscription cards that fall to the floor when you open it.
    And a 10-point quiz to detect whether your boyfriend is gay.
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Habeas Corpus: Bring me this fabled 'hysterical one' and I will deal with him

    Where is this ME/CFIDS patient who is underactive to the extent that deconditioning contributes more to his morbidity than PEM does? If he exists, bring him to me and I will personally apply CBT and GET to this hysterical fool and we can all be done with CBT/GET and move on to actual treatments.
     

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