1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

CBT/GET potentially harmful to ME/CFS patients

Discussion in 'Latest ME/CFS Research' started by _Kim_, Nov 3, 2009.

  1. _Kim_

    _Kim_ Guest

    This is a well-written review article on the harms of CBT/GET that I found it on THE NICEGUIDELINES BLOG: Doctor Speedy and ME in search of medical honesty.

    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

    Frank N.M. Twisk and Michael Maes

    Gingergrrl43 and COACH like this.
  2. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    source?

    Hi Kim

    I like what I could process of what they say in the article, but I think it's a bit of a hoax again. I'd love to find out that I'm wrong.

    I believe it's patient advocates putting out a scientific -looking paper and trying to pass itself off as something it's not.

    It concerns me because I believe this actually harms real research papers. There;s lots of good science out already; we don;t need fakes.

    > the urls say blog and wordpress

    > Twisk is from a patient foundation

    > The intro includes what they've proved rather that what they intended to test.

    >The NICE site is nice.org.uk/ (not one of these)

    > NICE's guideline articles are at guidance.nice.org.uk/ (not one of these)

    > neither site has any search results for the author names of Twisk or Maes

    > I couldn't establish the professional standing of Neuroendocinology Letters, nel.edu/home. But the front page doesn't look very professional and includes

    and yes - RAPID is capitalized and in red
    http://nel.edu/


    if:)
  3. _Kim_

    _Kim_ Guest

    This is getting more attention

    There's been some discussion about this article at the WPI facebook page. Michael Maes is a Belgian Doctor at the Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium. A look at his home page shows that he's been very very busy publishing articles on CFS lately. I don't think this is a hoax.
  4. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    That's great news Kim - some of the things I like in it are:

  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    http://www.ediver.be/ediver/latest news/PRESS RELEASE CBT and GET in ME CFS.pdf

  6. Great article Kim, thank you.
  7. Esther12

    Esther12 Senior Member

    Messages:
    5,098
    Likes:
    4,895
    I think it's worth mentioning that people CBT and GET can be very loosely defined therapies and attacking or promoting them without looking at the specifics can lead people to talking at cross purposes.

    Good CBT: helping people to think clearly about their illness, detach from unreasonable worries or rumination, and make the adaptations needed to help deal with their illness. (Personally I think most people, and certainly most GPs, would benefit from CBT to help them think more clearly and avoid their emotional reactions distorting their beliefs about reality.)

    Bad CBT: encouraging people to pretend they're not ill.

    Good GET: try to regulate exertion levels and avoid boom and bust, while trying to build up fitness through appropriate exercises. (Emphasis on APPROPRIATE: sadly, for many CFS patients, their illness and the demands of their lives leaves little or no room for any exercise program.) It also needs to be acknowledged that GET does not seem to bring improvements for many CFS patients, and can make symptoms worse, especially if carried out poorly.

    Bad GET: Push yourself to do a little bit more each day until you get better.

    Another problem with Good GET, is that it's very easy to confuse it with Bad GET. That could be why some of the trials for GET seem to perform so much better than when CRT is studied in the wild - especially if GET is administered by those with their own prejudices about GET.


    Those are my thoughts anyway.

    CFS, as it's currently diagnosed, will include people who would benefit from GET. I don't think I've found it helpful for myself (if anything, the opposite - but then it's almost impossible to DO Good GET properly), but we should not reject it for all just because it's been over-sold and linked to, as well as fostering, some rather unpleasant prejudices about CFS. Equally, I've never been able to get CBT (the mental health people keep assessing me and saying I'm too sane to benefit from it - too crazy for medicine, too sane for psychology), but I have read quite a lot about it, and think the broad underpinnings of this psychological approach are interesting and potentially useful for a lot of people, depending upon how they are applied and what you expect from them.

    It's really difficult to write clearly and accurately about these matters when many of us will have had such personal experiences with them, and especially when a lot of the literature promoting CBT/GET falls short of these standards. But over-blown dismissals can just lead to others saying "They don't want to get well... they won't even try yadda yadda."

    Because of the way GET/CBT is presented, and my own experiences with GET, I have developed an instinctive bias against GET, and can feel myself wanting to discredit papers supportive of GET while being far more accepting of claims opposed to GET. I expect the reverse is true for many in the medical community. I thought I'd mention this in case others have developed similar prejudices, and this ends up distorting the discussion here.

    Sorry if that was a ramble.
  8. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    Thanks for posting this. It think this report should be made a sticky post somewhere prominent on the site.

    It's very important for people who are newly ill to know about these dangers both for their physical and psychological well-being.

    when i first became ill (and even still now 5+ years later) i was constantly told (by drs. friends, family...everyone) to try and exercise...when i knew that even the slightest activity was going to cause me at a minimum to faint and maximum have a heart attack.

    i now have medical proof that my heart is physically (and emotionally ; ) damaged by this disease and i am best when in a reclined position.

    Believe you me....I would much prefer to be up and about...but it is dangerous for me....my body is protecting me from death by forcing me to stay in a reclined position.


    thanks, lisag
  9. dsdmom

    dsdmom Senior Member

    Messages:
    390
    Likes:
    45
    I saw my pcp today and was really annoyed with him. He had a long talk with me about exercise and how I needed to be doing it as much as possible and how that was going to make me better. I made him clarify - because I do not agree that making myself feel sick is going to make me better. Or fix any immune problems or viruses I may have. His point (I guess) is that it will get better with time and all the studies show that exercise is helpful.

    Well, it was clear to me that he does not read ALL the studies. He is not a cfs specialist. I was close to tears at one point. I have been sick for 3 years now. Prior to that I was always active - always doing something - snowboarding, hiking. biking, yoga, working out, etc. I'm sure may of you can relate. And suddenly I can't do 20 minutes without feeling like I have the worst case of the flu and if I go over that I will sleep for hours. And he told me that when I feel that way I cannot take a nap. What??? I'm a bit confused by this. Granted he's also my sleep doctor so I know is trying to hammer out some of my sleep issues so I sleep better at night, but still.

    Sometimes I want to tear my hair out. I feel like there's no doctors around me that get this and if I were to see them I'm sure this pcp would disagree with them. Guess I'm going to have to get a new pcp at some point.
  10. George

    George Guest

    Like you I was very active prior to this illness. It's taken me the last two years to get "down" to the appropriate level. I kept trying to do "something" since I was so goal oriented before. I've had to rethink my entire life. I figured out a couple of things that are important at least for me. One is that "PET" works where "GET" lands me in bed.(grins) Paced Exercise Therapy, I "exercise" for 5 min. each hour of the 12 hours per day that I'm up. I either do very gentle pull/push arm exercise (no weights) or 5 minutes of pacing the living room floor while deep breathing. At the end of the day I've had a full hour of exercise but in 5 min sets. If I try to do anything over this WHAMO, I'm in bed for days.

    It took a long time to work out how much and what and how often. This is my MAX and I don't try to do over that amount. If I'm having a particularly difficult day or week I don't even do that much. However, I notice the days that I don't "exercise" I don't feel well, and my sleep is of poorer quality.

    This amount seems to be enough to stop any more degeneration of muscle mass but I'm not building any either.

    PWC's need to realize that what you use to think of as gentle is probably way too much now. Also that breaking up activities and using "preemptive rest periods" allows you to do way more than trying to do it all at once.

    My day looks something like this:

    12 hours sleep
    1st hour up all heavy mental activity and light house keeping cooking
    2nd 5 min exercise/ 55 min rest
    3rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
    4rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
    5rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
    6rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
    7rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
    8rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
    9th hour 5 min exercise/15 min doing something light/rest for 40 min
    10th hour 5 min exercise/10 min doing something light/rest for 45 min
    11th hour 5 min exercise/55 min rest
    12th hour 5 min exercise/55 min rest/bed​

    I do it that way even on the days that I feel like I could do more. I read somewhere that giving your body the extra energy is like giving it a gift that it can use to heal. Using up all the energy on things that I want to do there is nothing left over to use for healing. So far all of the cases I've read that have gotten better have three things in common

    Preemptive rest/strict energy scheduling. (PET instead of GET)
    Having a relaxed attitude about being ill. (I guess this is CBT)
    And time a period of 4 to 8 years.

    Until something better comes along I'm going with this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    Thanks for that.

    However, have to reply:
    "Have a relaxed attitude about being ill" is not CBT.
    It may be taking a particular approach to life. CBT is done with an external person.

    You may get better, but I'm not sure anything is guaranteed and I don't believe any time frame can be set on it. Many people reach a plateau of activity. But if one believes people should get better in 4-8 years, it's too easy to then blame the patient for doing something wrong.
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    The CBT that is presented in the CFS literature as the evidence-based form suggests a particular approach to CFS.

    So one can talk about that sort of CBT and criticise it.

    I'm not going to try to summarise exactly what is said as have other things to do - it's basically the deconditioning model. So there is something specific that can be challenged.
  13. Mithriel

    Mithriel Senior Member

    Messages:
    563
    Likes:
    37
    Scotland
    As Tom says, CBT and GET as used in the UK have very specific meanings.

    The people who did the studies which were used for the NICE guidelines and which are the basis for the NHS clinics believe that their patients may have had a virus initially but it has gone. However having the illness helped them escape social problems so they want to go on being ill.

    CBT is to get them to realize that they are not actually physically ill any more and to face up to the problems that the illness is helping them avoid.

    This imaginary illness is leaving them deconditioned so they feel bad when they exercise so get caught in a feedback loop with more deconditioning more pain and so on.

    Graded exercise, where it is increased to a schedule no matter how the patient feels, is the answer.

    Though some of these positions may be softened in practice at the clinics it is still the theory behind them.

    Trudy Chalder wrote to a ward that a child might "scream with pain" but he should still be made to exercise.

    This idea that the benefits of sickness keep us ill is the reason for refusing benefits, wheelchairs, painkillers and testing for other diseases.

    It might have been Nancy Klimas who said that the British approach was denying people the advantages of psychological help. I have nothing against psychology as such but it has been corrupted in the UK.

    Even if individuals have been helped, the POLICY is still the same and dangerous for us all.

    Mithriel
    Sidereal likes this.
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,098
    Likes:
    4,895
    @ Tom & Mitheral:

    I quite agree that CBT and GET can be damagingly applied, but I worry that dismissing CBT and GET without mentioning the specific applications of these treatments which you disagree with can be easily misinterpreted by others. Maybe it's just because I'm new to the board, and everyone here knows that when they talk of CBT and GET they are only refering to very specific models of these therapies; but that could well confuse new patients viewing, and also play up to the prejudices of any doctors lurking.

    re "the British approach was denying people the advantages of psychological help"

    I quite agree. Hopefully the XMRV and other biological research will encourage the psychologists to improve their own work. It seems like the King's College lot have given up on explanations after being endlessly shown to be wrong, and are now sticking to 'treatments'. Hopefully that will encourage others to fill the gap.

    A paper like this one http://www.behavioralandbrainfunctions.com/content/5/1/10 seems to be suggesting a different type of CBT for the treatment of CFS (rather than just the management of)... and who knows, it may well be helpful for some. Personally I like the paper, not necessarily because I think it's on to anything, but rather because it seems honest about their uncertainty, and willing to make predictions which will help see if their explanation is right or wrong.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    I'm not sure that my post: http://forums.aboutmecfs.org/showpost.php?p=19815&postcount=12 should necessarily "play up to any prejudices of doctors lurking". But if you describe it in such ways, you may suggest to doctors that it was a prejudiced post because of the power of suggestion or they will simply not go back to check what was actually said but because of your post will later recall that the thread had prejudiced posts.

    Personally I'm not that worried about any prejudices of doctors who might be lurking. If people want to challenge what I or anyone else says in an open way, feel free. But I don't want to feel that we shouldn't say what we are thinking because of people who might possibly be reading it. As I say, if anyone else has concerns, they can always challenge what I or other people say.

    I think it is at least partly because some ME/CFS patients and patient groups haven't challenged GET and CBT/GET sufficiently that we have ended up with the mess that we are in in for example the UK, Belgium, the Netherlands. And probably more countries will follow, the more public centres that are set up.
  16. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    I read this before and found it a vague, speculative paper. There are lots of theories with regard to the illness. Personally I'd like more of the pie being given to study some of the more "physical" ones getting rather that the what has happened up to now, with a disproportionate amount of public research money (esp. outside the US) going to psychological/psychiatric research. But if people want to raise money to pay for such research, feel free.

    Similarly the treatment and management facilities offered in public systems concentrate disproportionately on psychological and psychiatric theories and in particular models based around deconditioning.

    One thing I was not convinced by in this paper was the mention of expectancy. It took me over 5 years to get diagnosed. An awful lot of the time during that period, I did not expect symptoms that occured and was not particularly focused on symptoms. I know others who weren't diagnosed for a while who were like that. (I only know I have the illness for that length of time looking back):

    I don't think the reason patients evaluate their cognitive abilities as impaired compared to previously is because of "negative response outcome expectancies". I think it is much more likely that the tests are often not picking up the abnormalities. Also a fMRI study found that patients with CFS had to work their brains harder to do the same level of cognitive test (an n-back test as I recall i.e. substract a constant like 7 from a total, working backwards).

    -----

    Speculation on my part but this makes me wonder if they like the theory as it gives the impression to the patient that they are interested in the biological factors when they may in fact see them as secondary or not as important as other factors.
  17. Esther12

    Esther12 Senior Member

    Messages:
    5,098
    Likes:
    4,895
    I think you're assuming I'm arguing with you when this is not the case.

    I don't think your post plays up to any prejudices either.

    You said "So one can talk about that sort of CBT and criticise it". I agree and was trying to clarify my point to make it clearer that I agreed, not contradict you. I don't think your posts have contradicted mine either.

    I certainly have no problem with people criticising CBT and GET, I just think that because these terms can apply to such a range of approaches it is easy for misunderstandings to occur. It seems that this has cause a lot of trouble within the medical community, and as we're often reduced to acting as our own doctors, it would be best to try to avoid the same occuring here. I wouldn't want those who have recently developed CFS to be instinctively dismissive of anything that sounded like GET or CBT because of reading this forum, when therapies like these may be beneficial for some. They might not take the time to argue back.

    Yes... and it was open about being vague and speculative. That's pretty impressive compared to most CFS papers imo.
  18. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    Hi islandfinn and all,

    You are right that this is not an original research study. But a review does not have to be.

    It is now listed in PubMed.

    Dr. Michael Maes is a proper doctor who has had many studies published before.

    Frank Twisk may only be from a patient organisation but he is just a co-author and there is no law that one has to have a PhD or MD to write an article. I've had letters published in various journals without either qualification (my education was interrupted because of ME/CFS).

    NICEGuidelines is just one person who mentioned the article. He is not directly associated with the article so nothing that is on his site should detract from the article itself.

    I think it is a great resource of studies that have found abnormalities in the response to exercise in ME/CFS. As well as other information on the topic.

    And because it is PubMed-listed, can be referenced if writing in to journals and the like (I can see myself referring to it - when writing letters to the editor to medical journals, one is often restricted in how many references one can use e.g. some say 5, and one of them will be the original piece so effectively it is 4 which often isn't really enough to reference every study one might like to reference).
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    If patients don't challenge such papers, often nobody does - it is not important enough to most other people in their lives.

    So I'm glad that some people do make the effort to gather the evidence against GET for all patients with CFS.

    We should be free to make observations that we feel are valid. I don't accept that I or my colleagues necessarily deserve a label of being "prejudiced" because we are instinctly sceptical of claims about GET often based both on personal experiences, experiences of others and reading. If the observations are not valid, people can challenge them.
  20. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,748
    Using the term "appropriate" exercises, is "begging the question" or alternatively is meaningless.

    We also do not know if everyone should necessarily be trying to build up their fitness. Trying to build up one's fitness may increase the chance of a relapse. Some people may be functioning at a level that their body can cope with - it may not be able to cope with a higher level of activity. Just like with a lot of interventions in medicine, the risks may outweigh the potential benefits.

    More science on the issue would be good. The Twisk and Maes paper shows the numerous abnormalities that have been found in the illness. Basically the "normal rules" that "exercise is good for you" don't necessarily apply e.g. the oxidative stress that is caused by going for a walk may outweigh any benefits.

    Rather than using the phrases, "good GET" and "bad GET", I think we should talk about good and bad exercise regimes. I'm now going to repeat what I say in the next post but basically GET in the ME/CFS field should describe programmes which do not generally "allow" you decrease depending on how you feel - using it in other ways is confusing. Phrases like "paced exercise" or "pacing with exercise" seem better for programs that might encourage exercise but they are seen as part of pacing.

See more popular forum discussions.

Share This Page