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Editorial in British Medical Journal

Discussion in 'General ME/CFS News' started by Kati, Feb 10, 2010.

  1. Kati

    Kati Patient in training

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    Defeatism is undermining evidence that chronic fatigue syndrome can be treated:



    Reading this piece, I thought reading the title that perhaps our british doctors had a change of heart. But no!!! They want us all to do CBT and GET. This is really insulting and annoying. What kind of evidence do they get that indeed CBT and GET works?:ashamed:


    British Medical Journal Editors, please read the recent studies from Lombardi, and all the evidence that has accumulated over the years that ME/CFS is an organic disease. Please open your mind to the possibility of a retrovirus. Imperial College had a biased perspective and different scientific techniques and failed to find XMRV in any of their 186 samples. Does it mean they are right? Obviously not, because there are some XMRV + patients in LK already, and somebody out there is donating blood not knowing they are infected with this retrovirus.

    May Lynn and Sophia's deaths have not been in vain. It's time for serious research now.
  2. Koan

    Koan Be the change.

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    Kati,

    I had a very similar experience as you reading this. My heart lifted... and then sank - deep!
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for the alert.
    BMJ prints this exact same nonsense on the regular.
    I sent them a little note:

    Emma Dickinson and BMJ:

    You've heard it all before- the mountain of bench science and clinical experience that ME/CFIDS is a specific, somatic, nonpsychological, extremely debilitating disease.

    I can't say anything better in response to your editorial that Malcolm Hooper (in "Defiance of Science" inter alia), Angela Kennedy and others have not printed.

    It boggles my mind that you and BMJ in conjunction with the Wesseley school continue to wage your war on ME patients resulting in tremendous iatrogenic morbidity. First- Do no harm.

    As Paul Cheney has said of your ilk- your "graves will be desecrated."
  4. Trooper

    Trooper Senior Member

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    "potentially treatable condition" ooo.. my vague alarm just went off!
  5. Min

    Min Senior Member

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    The whole article sucks.

    "The greatest risk to life is likely to be suicide, they explain. And this is often linked to depression that can be effectively treated."


    - to me this seems to be implying that Lynn wanted to die because she was depressed. No mention of how very physically ill she was or of the vaccination that caused her illness.


    "recovery may not be complete in many cases"

    - I thought the recovery rate was between 5 and 10%? I guess it depends whether you're looking at M.E. or Reeves-Wessely syndrome. I've been severely affected for 23 years now & my 'recovery' hasn't even started.


    "the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness"

    - well they were talking about Lynn, and for her and all the other profoundly affected patients the illness presents as that bad. The media usually portray us as a load of lazy scroungers (the Guardian still does).

    "and little has been said about the uncertainties and controversies that this diagnosis has always attracted."

    - they fail to say that this is because because Wessely, White, Sharpe, Chalder etc have deliberately muddled it up with psychological disorders. oops.
  6. valia

    valia Senior Member

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    This is a damn insult to Lynne Gilderdale
  7. jace

    jace Off the fence

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    Double post Ooops
  8. jace

    jace Off the fence

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    Kati, you ask what sort of evidence there is that CBT and GET works. There is a Dutch study I somehow downloaded from the BMJ site. I can only find the abstract now, but I may have attached it below, first time I've tried that..:confused:

    They took 71 consecutively referred patients age 10 - 17., using CDC criteria. 36 were assigned to therapy, one session a fortnight for five months. 35 controls did nothing.

    Six of the therapy group dropped out in the first half of the study time. Here's a cut and paste extract

    "Active patientsFor relatively active patients treatment started with them learning to recognise and accept their current state of fatigue and impairment. Subsequently, they reduced their levels of activity and learnt to respect the limitations. After achieving this balance, the patient started to build up activity levels. This protocol was used in the trial of Prins et al.4

    Passive patientsFor passive patients we started a systematic programme of activity building as soon as possible. To assure adherence, we first addressed and challenged their beliefs that activity would aggravate symptoms. In such patients it is thought to be counterproductive to reduce activity levels any further or reinforce the patients need to respect limitations."

    I love that - the active patients were taught to accept their need to respect their limitations, while the passive ones were told to reject their perceived need for limitation.

    For the younger kids, the parents were trained as cheerleaders. Over 15's did it for themselves.

    At the end of the five month study, they show that the therapy group had significant improvement in school attendance, symptom distress...I don't have the brain to understand their method of scoring, see if you do -
    --------------------------------------------------------------------------------------------------
    Table 4 Clinically significant improvement at five months in fatigue severity
    (checklist individual strength), functional impairment (SF-36), and school
    attendance (mean percentage) and self rated improvement by treatment
    group
    Condition No (%) improved------------ Treatment effect (95% CI)----------P value (whatever that is)
    Fatigue severity*
    Cognitive behaviour --21/35 (60)----------0.39 (0.17 to 0.61-------------------0.01
    Waiting list 7/34 (21)

    Physical functioning
    Cognitive behaviour -----22/35 (63)------- 0.39 (0.17 to 0.61)------------------0.01
    Waiting list ----------------8/34 (24)

    Full school attendance
    Cognitive behaviour -----19/33 (58)--------0.29 (0.06 to 0.53)------------------0.02
    Waiting list ----------------10/34 (29)

    Self rated improvement
    Cognitive behaviour ------25/35 (71)--------0.27 (0.04 to 0.78)-----------------0.02
    Waiting list ----------------- 15/34 (44)

    *Reliable change index >1.96 and cut off score of ≥35.7.
    Increase of ≥50 or end score of ≥75.
    Two participants were left out of analyses because they had taken their final examinations
    and therefore were not required to attend school at five months.
    Answer yes to statement I have completely recovered or I feel much better but still
    experience some symptoms.
    ------------------------------------------------
    They are a bit better - or they just wanted to please the nice doctor. I would want to know how things were three months after the therapy. And what was the story for the six that dropped out. That's 15% of the group, a fair percentage.

    Don't know about you, but I've given up trying to pull myself up by my bootstraps, because the damage I suffer afterwards shows me that that is the slippery slope to severe ME.

    Attached Files:

  9. Kati

    Kati Patient in training

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  10. jace

    jace Off the fence

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    Absolutely. but you were asking the psych lobby justify their stand on CBT/GET. I think the above Dutch study is one of their source works. It is important that we understand their thinking, in order to be able to persuade others effectively of our case. I really think we should be careful of avoiding any mud slinging, while remaining strong and firm. After all, we have a huge advantage - we have inside knowledge ;):D:eek:
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    According to the CDC criteria, the study says. Well, that may be the problem.

    CFS experts know, as Bell stated, if you get out of the house, do some shopping and begin to feel better, then that is likely depression. If you push yourself to get out, do some shopping and you feel worse, you likely have CFs.

    Tina
  12. Roy S

    Roy S former DC ME/CFS lobbyist

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    How factual is this part?

    "the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness"
  13. Julia Rachel

    Julia Rachel

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    God Forbid one of these Physicians promoting CBT and GET should already be married to a HHV-6A or XMRV postive person and contract this infectious disease themselves. I think we should emphasize, BLOOD SAFETY and TRANSMITTABLE FACTORS. Perhaps these 2 terms will wake them up? http://vlgonvalcyte.wordpress.com/
  14. Robin

    Robin Guest

    Kati, here's the cochrane reviews of CBT and GET. A lot of the studies in their meta-analysis are work of the Wessely school.

    Cochrane on CBT: The evidence base at follow-up is limited to a small group of studies with inconsistent findings.

    Cochrane on GET: Based on five included studies, this systematic review cautiously concludes that exercise therapy is a promising treatment for chronic fatigue syndrome. However, studies of higher quality are needed that involve different patient groups and settings, and that measure additional outcomes such as adverse effects, quality of life and cost effectiveness over longer periods of time.

    So there is "evidence" that CBT/GET works (which is vigorously contested in the patient community) but an objective analysis finds limits and holes in the positive findings.
  15. V99

    V99 *****

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    Not sure if anyone has seen the responses tot he BMJ editorial.


  16. V99

    V99 *****

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    I realise the article was talking about the medical profession, but I suspect most of us do not feel defeated. We are hopeful, particularly when we have people like Mikovits and Kerr working to find the cause.
  17. Koan

    Koan Be the change.

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    http://freespace.virgin.net/david.axford/psy-algy.htm

    The Psychologisation of Illness

    Ellen Goudsmit

    From the above paper:

  18. Carrigon

    Carrigon Senior Member

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    What is it going to take to get them to stop pushing CBT/GET? Those who truly have severe CFIDS/ME absolutely do NOT benefit from this. It makes us worse. The only people who can benefit from it are people have been misdiagnosed and are just depressed.

    I just don't understand how they can keep pushing this when the patients are clearly ill with severe physical and neurological symptoms. It's like pushing someone with a broken leg to walk and run on it. It makes it worse.
  19. Dolphin

    Dolphin Senior Member

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    Don't forget to post comments on the BMJ website

    Don't forget to post comments on the BMJ website http://www.bmj.com/cgi/eletter-submit/340/feb11_1/c738 . It isn't easy of course to get into the print version but it's not to hard to get a comment up on the site.

    It probably helps to make it look at least a little like a medical letter e.g. have at least one reference. Of course, one easy reference is the article itself (1).

    References:
    1. Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ 2010;340:c738
  20. Dolphin

    Dolphin Senior Member

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    One thing to keep in mind is that attending school doesnt mean these students achieved their potential in exams. I get the impression from the Tymes Trust that many children with ME/CFS who are coaxed back to school following CBT dont necessarily do well.

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