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Recovery from CFS after treatments given in the PACE trial - unpublished letters

Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 9, 2013.

  1. Dolphin

    Dolphin Senior Member

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    I think it would be better if there wasn't much discussion on this thread, so that it can be nice and compact, with people able to find the letters quickly. Most points will probably fit better on the main thread for this paper: http://forums.phoenixrising.me/inde...ter-treatments-given-in-the-pace-trial.21628/

    -------
    (it's not necessary to read all of the following before posting your letter)
    When the Lancet paper on the PACE Trial was published (White et al., 2011), a total of 44 letters were submitted.

    8 were published and 38 were not.
    We set up a thread http://forums.phoenixrising.me/inde...rs-that-were-not-accepted-by-the-lancet.9761/ to highlight the unpublished letters as they often summarised well points on the trial and sometimes included points that were not covered in the published letters.

    Another paper has recently been published on the PACE Trial is:

    and I know some people are sending in letters (although the numbers submitting letters seem way down from the Lancet paper, which is disappointing).

    Anyway, I thought I'd start this thread so people could post letters if they are turned down. If, for some reason, you don't want to post your own letter, I can post it for you or you can get another member of Phoenix Rising to do some.

    Note: don't post a letter until you have decided you are not submitting any more letters and everything you have submitted has been refused. That is to say, if you have a letter refused, but you re-submit another letter that is in any way similar to the letter that was turned down, don't post either here until all the letters have been turned down (if that occurs). The journal already said it was not publishing a letter Dr. Shepherd submitted as it was on the ME Association website and they could apply this to first drafts too.
    biophile and Valentijn like this.
  2. Tom Kindlon

    Tom Kindlon Senior Member

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    My letter was turned down with the following comment:
    Good news that they are publishing some esp. if all the points I made are made, though I will wait to see the published letters before accepting this has occurred.

    Battery Muncher, Roy S and Valentijn like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member

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    Quelqu'un a traduit ma lettre. Je n'ai pas cherché pour trouver des erreurs - ce serait trop fatigant pour moi. Si quelqu'un voit des erreurs dans la traduction, je vous serais reconnaissant si vous aurait faites le moi savoir.
    Valentijn likes this.
  4. Bob

    Bob

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    England, UK
    Rejected letter, with standard response:
    "The points you make have already been raised in an earlier letter we have received."



    Generalisability of recovery outcomes based on the Oxford criteria.

    One of the components for the PACE Trial’s main ‘recovery’ criteria (White et al. 2013), was exclusion from the Oxford criteria (Sharpe et al. 1991) for CFS (chronic fatigue syndrome.)

    Unlike internationally recognised diagnostic criteria for CFS (Reeves et al. 2003; NICE 2007) the Oxford criteria require that ‘fatigue’ must be the ‘principal symptom’.

    A trial participant would be excluded from the Oxford criteria, thus fulfilling one of the criteria for a trial ‘recovery’, if any other of the common symptoms seen in CFS (for example: malaise, impaired memory, impaired concentration or pain) (Reeves et al. 2003; NICE 2007, VanNess JM et al. 2010; Van Oosterwijck et al. 2010), became the ‘principal symptom’, even if the participant’s physical disability deteriorated after treatment.

    The unique feature of the Oxford criteria for CFS, such that the prominence of common symptoms in CFS is used as an exclusionary criterion, raises a question over the generalisability of ‘recovery’ outcomes based on the Oxford criteria.





    References:

    NICE (2007). Chronic fatigue syndrome / Myalgic encephalomyelitis: full guideline. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of CFS/ME in Adults and Children. National Institute for Health and Clinical Excellence (NICE) Clinical Guideline 53. (http://guidance.nice.org.uk/CG53/Guidance/pdf/English)

    Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER ; International Chronic Fatigue Syndrome Study Group (2003). Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BioMed Central. Health Services Research 3, 25.

    Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, Edwards RH, Hawton KE, Lambert HP, Lane RJ, Mann A, McDonald L, Mowbray J, Pearson D, Pelosi A, Peto T, Preedy V, Smith A, Smith D, Taylor D, Tyrrell D, Wallace P, Wessely S, White PD (1991). A report– chronic fatigue syndrome : guidelines for research. Journal of the Royal Society of Medicine 84, 118–121.

    VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. (2010) Postexertional malaise in women with chronic fatigue syndrome. Journal of Women’s Health 19:239-44.

    Van Oosterwijck J, Nijs J, Meeus M, Lefever I, Huybrechts L, Lambrecht L, Paul L. (2010). Pain inhibition and postexertional malaise in myalgic encephalomyelitis⁄chronic fatigue syndrome: An experimental study. Journal of Internal Medicine 268:265-78.

    White PD, Goldsmith K, Johnson AL, Chalder T, Sharpe M. (2013). Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological Medicine Jan 31:1-9 [Epub ahead of print.]

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