GET & CBT: Paper on harms incl. survey results from 4 countries

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Dec 14, 2011.

  1. QuayMan

    QuayMan Member

    I thought I would highlight the following paper as I know some are interested in the topic. Also, perhaps some people have already read it?

    It can be read for free at:

    (edited by moderator)
  2. QuayMan

    QuayMan Member

    The abstract was edited out from the last message based on the assumption there was no permission to post. But I did have permission to post which has been agreed with the moderating team so here it is again:


    Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions.

    To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms.

    Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

    However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys.

    Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.

    Using the CONSORT guidelines as a starting point, this paper identifies problems with the reporting of harms in previous RCTs and suggests potential strategies for improvement in the future.

    Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants’ compliance to therapies, and measurement of harms using patient-oriented and objective outcome measures are discussed.

    The recently published PACE (Pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation) trial which explicitly aimed to assess “safety”, as well as effectiveness, is also analysed in detail.

    Healthcare professionals, researchers and patients need high quality data on harms to appropriately assess the risks versus benefits of CBT and GET.

    Bulletin of the IACFS/ME. 2011;19(2):59-111.
  3. simpsons

    simpsons Member

    a very interesting powerful and useful paper on the harms of cbt and get

    i strongly agree with the paper that harms done by cbt and get should be reported, and am very pleased to see a research paper highlighting this area of great concern for pwme

    a must read for all pwme and researchers alike
    thank you for posting
  4. Mikie

    Mikie Moderator

    That prescribing increased physical therapy for people with CFIDS/ME, or even FMS, can be catastrophic. Just doing one simple thing is often enough to put a patient in bed for a week. I did have physical therapy for my FMS but it was very gentle and maintained strength and flexibility when I wasn't able to exercise.

    CBT, on the other hand, can be very useful. It is therapy designed to deal with a very small area of what ails us and others with different illnesses. It doesn't deal with physical exertion. It is therapy to help us recognize when we let thoughts lead us down negative paths. In my case, I was catastrophizing. I would get a worry thought and it would escalate in my mind into a crippling scenario. I learned to recognize this at the beginning of worrying and not let my thoughts cripple me in fear of the worst. That many of us suffer from anxiety is reason to get rid of thoughts which increase our anxiety. CBT freed me from living in fear.

    I wish there were more info on why CBT is being attacked in the paper. It isn't a cure all but I've never heard of its making people sicker.

    Love, Mikie
  5. simpsons

    simpsons Member


    cbt for ME is designed for false illness beliefs and to correct them.

    its part of the all in the mind nonsense that ignores all the science research.

    so its not usually designed to help people cope with ME cfs as you have experienced.

    this is the reason behind why many patients with ME cfs get such short shrift from Dr's.

    one patient i spoke to who had a serious but rare lung dx, was incorrectly dx with ME cfs and ''was made to feel as if i was going mad''

    fortunately she got a correct dx in the end

    i will let quayman explain further in more detail

    we don t just think we are ill we are ill and to tell us or try to convince us otherwise is torture. Also very distressing to patients
  6. Mikie

    Mikie Moderator

    Apples and Oranges. Different CBT. In this day and age of overwhelming evidence of the validity of our illnesses that there are still quacks trying to invalidate them is rediculous. It's got to all be about money. If everything is in our minds, treatment is limited to mental care and no physical medicine. Also, if it's in our minds. we can be cured enough not to need disability. It's bad enough that we are physically ill but it's outrageous that we are presented as nut cases. Our illnesses may be neurological in nature but that doesn't mean they are "all in our minds."

    Thanks for the info on this kind of CBT. How awful!

    Love, Mikie
  7. QuayMan

    QuayMan Member

    The paper says near the start:
    "The purpose of this paper is to explore issues of safety for ME/CFS patients in regards to GET and ***the form of CBT that involves scheduling increasing activity and/or exercise.***"

    Here's a quote discussing one program:
    "Marks highlights how there can be many differences between programs that appear superficially to be similar (96). Practitioners themselves can alter the program they offer over time. In a manual published in 2006, the influential team at Radboud University Nijmegen Medical Center described how their CFS program had changed from the one assessed in an earlier RCT (32,97). The newer approach involved dividing patients up into two groups, the so-called “relatively active” and “relatively passive”, and giving different advice to each group. The new protocol for “relatively passive” patients was quite intense (32): "So, for example, the first day the patient has six 1-minute walks, the second day six 2-minute walks, the third day six 3-minute walks, and so on. The aim is a total build-up of 5 minutes a week for each walk a day.”

    Graded Exercise Therapy and this form of CBT are said to be "evidence-based" in the medical literature. They are the only front-line treatments/therapies recommended by UK's NICE (i.e. that should get within the healthcare system). The situation is similar in Belgium and Netherlands.

    It could potentially extend to a lot more countries. Also, coercion may become an issue e.g. a disability insurance says they won't give you money till you try them.
    [This Message was Edited on 12/21/2011]
  8. Mikie

    Mikie Moderator

    I appreciate the info. This is horrible! People with CFIDS/ME do not tolerate exercise well. In fact, it has put me in bed even though, at the time, I was enjoying the exercise. We have a definite physical response to exericse which can be totally exhausting. It is obvious that these idiots have never experienced the bone-crushing exhaustion that is so common for us.

    How does the govt. and medical community respond to Sjogren's Syndrome in the UK? The fatigue from that made my CFIDS/ME look tame by comparison.

    Love, Mikie
  9. QuayMan

    QuayMan Member

    Thanks, Mikie.

    Afraid don't know anything in particular about how the the govt. and medical community respond to Sjogren's Syndrome in the UK
  10. simpsons

    simpsons Member

    Sjogren's Syndrome in the UK

    i know one lady with sjogren's syndrome who was sent to ME clinic and told she had cfs in the uk

    she questioned it and was told she had all symptoms of cfs

    she runs a support group for pwme which i had trouble understanding

  11. Mikie

    Mikie Moderator

    It isn't unusual to have both as immune and auto-immune illnesses travel in groups. Sjogren's has such distinct symptoms, though, that one should be able to get a diagnosis. Here in the US, it takes, on average, 6 1/2 years to get a diagnosis. That's when tests finally confirm what the docs and patients knew all along.

    Thanks, Simpsons, for posting this. I have to wonder whether this woman was told she had ME so she could be discounted like everyone else with ME.

    Love, Mikie
  12. simpsons

    simpsons Member

    Sjogren's Syndrome is not something i understand mikie

    however the recent bio medical funding for ME in the uk has funded some research into sjogren's syndrome as it is so alike to ME. they are looking at the immune sys in sjogren's syndrome and i think so that they can try to find markers for ME.

    this is the first time we have had any funding for bio medical research from the medical research council. one point six million pounds in total for a few research projects. ranging from looking at sleep mitochondrial function in muscles. so the lobbying we have done against this type of cbt and get has at last paid off. check out me research uk for more details they got the most funding and have a good info page with good links on it. would love to hear your feedback.

    i m very grateful for this as the harms of GET have left many house and bedbound for life. lynn gilderdale is a famous case in the uk. her mother talks of how they were advised to get her to exercise and how she believes that had they been educated and aware of the harm this would do and not done this. lynn may have not become so severe and may have recovered. very sadly if you are not aware lynn committed suicide and was helped by her mother. a book was written called one last goodbye.

    the uk dr's are not made aware of research other than get and cbt as the nice guidelines recommend them only. there is no research in them of bio medical nature.

    dr's need to be aware that get cbt route can cause harm, and this needs to be reported. much in the same way as drug harms are reported

    hope you had a lovely christmas

  13. Mikie

    Mikie Moderator

    What a sad story.

    What I don't understand is that the peptide injections for our illnesses are a result of Oxford University Research in conjunction with a lab which prepares the peptide sera. Success tops 90 percent and these have been used for more than 30 years. I would think the emprical results would convince the govt. that there is a physical problem in people with CFIDS/ME.

    Love, Mikie
  14. QuayMan

    QuayMan Member

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