Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Article: FINE

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 3, 2010.

  1. Angela Kennedy

    Angela Kennedy

    Essex, UK
    I am a veteran vote spoiler.

    I realised a long time ago no party had the interests of people like me and mine at heart, sadly, and power is the driving force.

    The 'televised debate' was more like an episode of 'Call My Bluff', for example, using all the old rhetorical devices and ad hominem leading to three performances.

    I use my voting slip to write a pithy assertion/demand - have done ME/CFS in the past- I have an unrelated subject to shout about this week though.

    I believe they have to read out the spoiled votes to the candidates? I'm only going on third hand information there though.

    The reasons I say this are only that 'party' politics can get very anodyne at best; many people, being too disillusioned to vote, then get accused of apathy. Some creative spoiled votes provide an alternative means of registering your disapproval if you are feeling disenfranchised.
  2. Cloud

    Cloud Guest

    Great article Cort....Thanks for keeping us informed.:Retro smile:
  3. Kelly


    May already be in the works

    From the CDC Five-Year Plan
    Clinical Intervention Studies

    Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.

    * Evaluate cognitive behavioral therapy and graded exercise in participants
    * Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes

    Dr. Reeves considered UK psychiatrist, and lead researcher with the PACE trial, Dr. Peter White his "favorite sparring partner." I guess the question is would the CDC will use the 1991 Oxford criteria or the CDC Empirical definition - although if a comparison were made there would be most likely be little difference in patient groups.

    A check of PubMed, shows these two have previously teamed up for research and Dr. White often reviewed CDC research papers.
  4. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Not to mention Dr. White helped Reeves and the CAA create the CME which are the Continuing Medical Educational materials our doctors use to learn how to treat CFS.
  5. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    No need to apologise Adam.

    I dare say, post the results on Friday, that whoever wins will have to come clean about the true scale of the national debt and the resulting austerity measures will mean a tough time all round.

    Hopefully tough enough to ditch any proposed extension of unproven luxuries like CBT (no smiley for fingers crossed!)
  6. Enid

    Enid Senior Member


    In my ten years with ME I have experienced and witnessed the insidious ascendancy, progression and tentacles of Psychiatric theory - somatization (where's the science - Royal Free - mass hysteria). In 2010 to be carried fainting 3 times to A & E and presented with a Psychiatrist (we've a new theory) where limited investigation had failed real Doctors who deeply knew a disease process. We'll get there - and to fellow Brits please support/watch Invest in ME - Annual Conference London 26/5 Whittemore, Peterson, Cheyney, Chia, Markovits, Klimas, Hooper. And others quietly working to overturn the whole of ME hisory.
  7. cinderkeys


    I've said this elsewhere, but the irony is that the pragmatic rehabilitation had no long-term impact on anxiety or depression. Even if ME were caused by psychological factors, as the psychologizers say it is, their solution wouldn't help.
  8. Sherby

    Sherby Sherby

    London UK
    A point id like to make. I was led to believe CBT was originally designed by psychiatrists and authorized by government as only a complementary therapy to help cope and manage physical disability. But covertly, over at least 20 years or more, this complimentary therapy has been stealthily manipulated into common use,
    and is now seen by some/many as the only treatment or even cure for CFS. I had CBT therapy over 20 years ago, But not like this present version. This version is harsh and unforgiving. JUST SAY NO..
  9. flybro

    flybro Senior Member

    I know of someone with pschitz dx, that recently told their psychiatrist that they were feeling really well and that they could definatly see themselves going back into work place.

    I dont know what question or situation lead to this statment, but I know the person quite well and imagine it was an engineered discussion with that outcome desired.

    2 hours later they got a phone call from one of the back to work bods.

    The person concerned had only been feeling well for less than a month, less than five weeks ago they could'nt stay awake for than an hour or two.

    in what world can we get that kind of medical help, the one where we make a statement and 2 hours later we get help.

    in what world is it that a trained psychitrist would put that kind of pressure on someone that suffers relapses under pressure.

    So now we have someone that was feeling well, positve upbeat and capable, feeling insecure, foolish and scarred.

    Also what trust will there be now between the patient and the psychiatrist, and undoubtedly if the patient voiced a distrust of the psychiayrist the patient would merely be displyaing a symptom of mentle illness, as opposed to sound judgement.
  10. liverock

    liverock Senior Member

    The whole idea that patients will improve with exercise no matter whats wrong with them(not just ME/CFS) is gaining ground throughout the medical profession.

    Patients in hospital ICU units are now being dragged out of bed and forced to exercise supposedly to get them out of the ICU 2 days earlier.:eek:

  11. Jerry S

    Jerry S Senior Member

    Good find, liverock! The article shows how far the medical profession's blind faith in exercise can go.
  12. leelaplay

    leelaplay member

    Very good BMJ rapid response to the FINE Trial Paper

    [sb: I couldn't find this posted anywhere. Well done Sam.]

    Rosie Cox <> [via Co-Cure Moderators <>] to CO-CURE May 6

    Competing interests: None declared

    A valedictory dispatch from the Psychosocial School? 5 May 2010
    Sam Carter,
    ME Patient

    Does Pragmatic Rehabilitation (PR) reduce the "fatigue" experienced by
    people diagnosed with CFS/ME according to the Oxford criteria (1)? Wearden
    et al report in the Abstract of their paper that after 20 weeks of PR
    participants had "significantly improved fatigue" and, in their linked
    editorial, Moss-Morris and Hamilton state that participants receiving PR
    were "significantly less fatigued". However, in the body of the text,
    Wearden et al describe the improvement as being "small" and "clinically
    modest". Thus, in the same journal, we find that the effect of PR on fatigue
    is simultaneously "significant" and "small".

    The effect cannot be both large and small, so which interpretation best
    matches the data?

    A participant's fatigue was measured using the 11 item Chalder Fatigue Scale
    (ChFS) "scored dichotomously on a four point scale (0, 0, 1, or 1)". The
    ChFS has been criticised because it "has a low ceiling, so patients with
    maximal scores at baseline will not be able to record an exacerbation after
    treatment." (2) The maximum one can score on the ChFS is 11, after which it
    cannot detect further deterioration. It can be seen from the published data
    that participants receiving PR had a mean baseline ChFS score of 10.49 from
    which it can be calculated that between 47 and 88 of the 95 participants
    started therapy with a ChFS score of 11. Therefore, at least half of the
    participants could not report that PR had worsened their fatigue, even if
    such were the case. PR involves graded exercise so one would expect this
    therapy more than "supportive listening" or normal GP treatment
    (unspecified) to exacerbate fatigue but, had this occurred, the ChFS could
    not have detected it. Thus, the inability of the ChFS to measure
    deterioration in this patient cohort biases the trial in favour of finding
    "improvements" in fatigue and, in particular, favours PR because
    exercise-induced relapses cannot be recorded.

    A genuine improvement in fatigue would, axiomatically, lead to increased
    physical capacity, but no statistically significant change in physical
    function was found in the PR group and, in fact, participants randomised to
    the control group (GP treatment as usual) experienced greater improvement in
    physical function.

    Thus the conclusion that PR led to a real improvement in participants'
    fatigue must be interpreted with caution.

    The authors suggest that "treatment effects may have been enhanced had we
    been able to provide post-treatment booster sessions." However, it is
    instructive to note that the mean ChFS score fell from 10.49 at baseline to
    8.39 after 20 weeks of therapy where, according to the text, "total scores
    of four or more on the fatigue scale designate clinically significant levels
    of fatigue." Therefore, even if extra sessions had trebled the efficacy of
    Pragmatic Rehabilitation, participants would still have "clinically
    significant levels of fatigue".

    Notwithstanding, Wearden et al comment: "it is likely that our trial gives
    an accurate indication of the effectiveness of nurse delivered pragmatic
    rehabilitation and supportive listening for CFS/ME in primary care." Indeed
    it does: the data provide strong evidence that the anxiety and
    deconditioning model of CFS/ME on which the trial is predicated is either
    wrong or, at best, incomplete. These results are immensely important because
    they demonstrate that if a cure for CFS/ME is to be found, one must look
    beyond the psycho-behavioural paradigm.

    (1) Sharpe MC, Archard LC, Banatvala JE, et al. (February 1991). "A
    report--chronic fatigue syndrome: guidelines for research". J R Soc Med 84
    (2): 118-21

  13. Robin

    Robin Guest

    HAHAHAHAHAHA! There's no evidence of damage because they made it so you can't measure the evidence. [TomK's head will surely explode with expasperation.]
  14. leelaplay

    leelaplay member

    I couldn't resist bringing this over. Seems appropriate for what I know of the FINE trials.

    From 2 women from Maine who have just published a book on ME/CFS and FMS (see this thread for more info on them and the book)

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