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Correspondence on exercise in the Journal of Rehabilitation Medicine

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 13, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Correspendence is in press on this issue from:

    Tom Kindlon & Ellen Goudsmit -
    Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of adverse reactions

    Replies from
    Lucy Clark & Peter White
    &
    Jo Nijs, Lorna Paul and and Karen Wallman

    What follows are links to the earlier article and correspondence:

    --------

    Full text is available for free at:
    http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0185
    (I find this an odd article - the authors switch from say good things to bad things to good things throughout it, IMHO).
     
  2. Dolphin

    Dolphin Senior Member

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  3. Sunday

    Sunday Senior Member

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    Arrrrrgh.

    Sorry I don't have anything more intelligent to say. Wish they would GET CFS/ME for awhile and see how great exercise makes them feel. Is the second writer citing the studies where they didn't provide a check box for "made worse", so there wasn't any possibility of the study turning up the wrong answer for them?
     
  4. Dolphin

    Dolphin Senior Member

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    Not sure about this.

    Clark and White do cite the 2001 study. I don't know how the 2003 study disproves the 2001 survey - doing GET under a professional wasn't associated with a better outcome in the 2003 survey. I think White is hoping people won't look up the 2003 survey:

    (from: http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm )

    ---
    2001 survey data:
    More survey results at:
    http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm
     
  5. Dolphin

    Dolphin Senior Member

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    Links to all the letters (all now free)

    (i) The following article was published in April 2008:

    Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations.
    Nijs J, Paul L, Wallman K.
    J Rehabil Med. 2008 Apr;40(4):241-7.PMID: 18382818 [PubMed - indexed for MEDLINE]

    Abstract:

    Controversy regarding the aetiology and treatment of patients with chronic fatigue syndrome continues among the medical professions. The Cochrane Collaboration advises practitioners to implement graded exercise therapy for patients with chronic fatigue syndrome using cognitive behavioural principles. Conversely, there is evidence that exercise can exacerbate symptoms in chronic fatigue syndrome, if too-vigorous exercise/activity promotes immune dysfunction, which in turn increases symptoms. When designing and implementing an exercise programme for chronic fatigue syndrome it is important to be aware of both of these seemingly opposing viewpoints in order to deliver a programme with no detrimental effects on the pathophysiology of the condition. Using evidence from both the biological and clinical sciences, this paper explains that graded exercise therapy for people with chronic fatigue syndrome can be undertaken safely with no detrimental effects on the immune system. Exercise programmes should be designed to cater for individual physical capabilities and should take into account the fluctuating nature of symptoms. In line with cognitive behaviourally and graded exercise-based strategies, self-management for people with chronic fatigue syndrome involves encouraging patients to pace their activities and respect their physical and mental limitations, with the ultimate aim of improving their everyday functioning.

    Free full text at:
    http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0185

    ---------------

    (ii) Lucy Clark and Peter White co-wrote a reply to which the authors
    replied:

    Chronic fatigue syndrome.

    Clark LV, White PD.

    J Rehabil Med. 2008 Nov;40(10):882-3; author reply* 883-5. No abstract available.
    PMID: 19242631 [PubMed - indexed for MEDLINE]

    *Response by: Jo Nijs, Lorna Paul, Karen Wallman

    Full free text at:
    http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0261
    and
    http://jrm.medicaljournals.se/article/abstract/10.2340/16501977-0261

    ------------

    (iii) Ellen Goudsmit and Tom Kindlon wrote a response to this correspondence, to which the other two groups replied:

    Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of
    adverse reactions
    Kindlon T, Goudsmit EM

    J Rehabil Med. 2010 Feb;42(2):184-6
    DOI: 10.2340/16501977-0493

    Full free text at:
    http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0493
     
  6. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Thank you tomk.

    It was very interesting and enlightening reading the paper and the responses to the paper. Thanks for keeping on top of this and for sharing it all with us.
     
  7. Dolphin

    Dolphin Senior Member

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    Thanks gracenote - well done on reading all that.
    I found the first paper a bit of a curates egg some good bits but then theyd go back to suggesting exercise was the answer. And Ive no confidence in their exercise program.

    However, it was the Clark/White response that was what I felt needed a reply.
    It really shows how hardline White is that he would challenge the initial Nijs paper.
    And I think it is a disgrace that he (White) didnt mention his own paper (which was published in the Journal of CFS which is not PubMed-listed so most people wouldnt notice his omission).
     
  8. Julia Rachel

    Julia Rachel

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    California
    I'll never forget the day when my son Blake collapsed at a state finals track meet in the 800 meter run. He finished his race third, ran over to a shady tree (it was HOT) and collapsed. He was clutching his heart and complaining of a severe headache, he had vomited as he ran in the race; yet he kept running for his "team". He finished that race\, which was his last track meet. During the 5+ long years and 20+ doctors it took to diagnose Blake with CFIDS.....he was put through many tests. One of these tests was with a Cardiologist. It was "the Treadmill test". Blake passed with flying colors (muscle memory & sheer Willpower), then proceeded to be bedridden for 2 months. As far as the Cardiologist was concerned, nothing was wrong with Blakes' Cardio system. As far as I was concerned, as we traveled the 400 miles back home and Blake was clutching his heart....something was drastically wrong with his cardio system. I live on a Horse Farm....and I know Horse Crap when I see it. This exercise theory is pure horse crap. I am an athlete (swimmer,competitive horses,race car driving) and I know what is going on with my body. I've trained extensively in sports as has my son. We know our bodies and we intuitively know our limits with this CFIDS illness. I'd rather be in a pool swimming laps anyday, than a couch potatoe. How dare someone theorize that my son ought to exercise according to a "plan" and risk a heart attack. According to some Leading CFIDS Specialists, they do NOT ADVISE EXERCISE until viral load is diminished and the central nervous system is safely restored. Studies are underway as to cardio involvement. I am not happy with this exercise theory and methodology. Julia....http://vlgonvalcyte.wordpress.com/
     
  9. Dolphin

    Dolphin Senior Member

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    I agree with you Julia Rachel and understand your passion. I come from a mathematical background and tend to try to avoid expressing emotion in writing but I was so annoyed by Peter Whites letter that it drove me to spend quite a lot of time on the letter during my summer vacation.

    If one follows the link in my .sig, you can see the sorts of things he wants to deny patients because he believe all patients need is a Graded Exercise Therapy program to get back to normal.
     
  10. Mithriel

    Mithriel Senior Member

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    Scotland
    My son was suffering from fatigue and headaches. (It turned out to be coeliac disease which no one tested him for despite him having the very large clue that he was anaemic, very unusual for a twenty three year old! He was only diagnosed when his sister, also anaemic, saw a doctor who had had a flat mate with coeliac disease was found to have it.)

    Anyway, he was referred to a neurologist who said he should exercise more since exercise cures fatigue.

    At the time he was working 12 hour shifts in a factory, had a three month old baby and was spending weekends fixing up a flat for his family. No one ever bothers to ask how much we do.

    I had ME for seventeen years before CFS was invented. Suddenly they spoke about fatigue, which I had never associated with my illness, and deconditioning. I had three young children and spent my day walking from playgroup to school, to the shops, to my mother's. I walked instead of taking a bus because I got ill if I stood, I used a walking stick because of vertigo (it told me which way was upright) and by nine at night I was blind and needed help to walk.

    I was very sick, but I had more exercise in a day than the average desk worker.

    Mithriel
     

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