1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,369
    Likes:
    5,848
    Just saw this clarification pop up on list serv. I've seen a few things which indicate that lots of questions are now being interpreted as FOI requests (not just related to PACE). I wonder if there's an attempt to claim that they're being overwhelmed with harassing FOI requests, when equivalent requests sent to other researchers are just answered easily by e-mail. To me, it seems that psychosocial CFS researchers are really emphasising how victimised they are since PACE showed that their 'treatments' are so much less effective than had been claimed.

    https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1303b&L=co-cure&F=&S=&P=9738

    Dear Mr. Kindlon

    Thank you for your email of 2nd February, which has been dealt with
    under the Freedom of Information Act 2000.

    The information you have requested is effectively available in the
    paper published in Psychological Medicine (available at:
    http://journals.cambridge.org/psm/White - please see top-right of page
    3).

    This means that having a score of 70 or more on the SF-36 sub-scale
    would mean that the participant did not meet Oxford criteria.
    Similarly having a score of 5 or less on the Chalder fatigue
    questionnaire would mean that the participant did not meet Oxford
    criteria.

    If you are dissatisfied with this response, you may ask the College to
    conduct a review of this decision. To do this, please contact the
    College in writing (including by fax, letter or email), describe the
    original request, explain your grounds for dissatisfaction, and
    include an address for correspondence. You have 40 working days from
    receipt of this communication to submit a review request. When the
    review process has been completed, if you are still dissatisfied, you
    may ask the Information Commissioner to intervene. Please see
    www.ico.gov.uk for details.

    Yours sincerely

    Paul Smallcombe
    Records & Information Compliance Manager


    -----Original Message-----
    From: Tom Kindlon [mailto:[log in to unmask]]
    Sent: 02 February 2013 22:05
    To: [log in to unmask]
    Subject: Re: Recovery from chronic fatigue syndrome after treatments
    given in the PACE Trial

    Dear Prof. White,

    I read your paper, “Recovery from chronic fatigue syndrome after
    treatments given in the PACE Trial”, with interest.

    I have a couple of quick questions that would help me help inform
    members of the Irish ME/CFS Association about the trial (e.g. in our
    newsletter) as well as help inform any comments I might make in other
    fora e.g. were I to submit a letter to Psychological Medicine, it
    would be better for everyone if it was based on good information (you
    may recall that I have had some letters published in medical journals
    in the past, including in reply to the Lancet paper on the PACE
    Trial).

    (i) What score would somebody need to score on the SF-36 PF subscale
    to not meet the Oxford criteria (and hence have the possibility of
    being classed of "clinical" recovery at 12 months). Is it a SF-36 PF
    score of greater than 65? Or something else? A lot of people have said
    it's greater than or equal to 60 but I'm not so sure.

    (i) What score would somebody need to score on the Chalder Fatigue
    scale to not meet the Oxford criteria (and hence have the possibility
    of being classed as having "clinical" recovery at 12 months). Is it a
    Chalder Fatigue bimodal score of less than 6? Or something else?

    Thanking you for your time.

    Tom Kindlon
    Information Officer/Assistant Chairperson
    Irish ME/CFS Association
     
  3. Graham

    Graham Senior Moment

    Messages:
    840
    Likes:
    2,193
    Sussex, UK
    Thanks Tom and Esther. So just one twitch away in the questionnaire on fatigue OR in the one of physical activity, covering only the previous week, and you are "recovered"? It is as appalling as we thought.
     
    alex3619, Battery Muncher and Dolphin like this.
  4. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    ME Association Facebook 13 March 2013

    Looks like some publication of letters is imminent then.
     
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,672
    Likes:
    10,069
    Amersfoort, Netherlands
    Yup, I submitted one and it should be getting published. I'm waiting for their final approval of the revisions I made at their request.
     
    ukxmrv likes this.
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    I've just noticed that there is no reference to the McCrone et al. (2012) paper (and hence its findings) in this paper.
     
  7. Bob

    Bob

    Messages:
    8,791
    Likes:
    12,106
    South of England
    Here's an inconsistency that I've just spotted. I don't know if this has been picked up before. They've got themselves in a muddle again!

    Quote from the recovery paper from page 3:

    CFS case definition : Oxford criteria
    [...]
    To satisfy the third criterion for severity of fatigue and disability, participants had to meet trial entry thresholds for fatigue (a binary score of ≥6 out of 11 on the CFQ) and abnormal levels of physical function (a score of 65 out of 100 on the SF-36 physical function subscale) (White et al. 2007).

    So a SF-36 PF score of 65 is 'normal', 'recovered', 'abnormal' and 'significantly disabled' etc. etc.!

    The mind boggles!
     
  8. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Perhaps someone could collate (with page references) the various quotes where they allow a score of 65 to be classified in those ways? That would be a powerful little fragment of text...
     
  9. Bob

    Bob

    Messages:
    8,791
    Likes:
    12,106
    South of England
    ≤65 is the entry criteria, described as 'significantly disabled', by White et al. in the Lancet [1].

    For the main trial 'recovery' a participant can have an SF-36 PF score as low as 60. (≥60.)

    A score of ≥60 is in the 'normal range'.

    A score of ≤65 is described as 'abnormal', in the recovery paper, as quoted above. (Although, I doubt if this is included intentionally, but is an oversight, caused by the confusion that they created with such a messed up, and continuously changing, set of thresholds.)


    [1] White PD, Goldsmith KA, Johnson AL, Walwyn R, Baber HL, Chalder T, Sharpe M (2011). The PACE trial in chronic fatigue syndrome — Authors' reply. The Lancet, Volume 377, Issue 9780, Pages 1834 - 1835, 28 May 2011. doi:10.1016/S0140-6736(11)60651-X
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext
    "PACE trial participants represented typical secondary-care CFS patients: young to middle-aged, significantly disabled, and ill for a mean of 2·7 years."
     
    Battery Muncher, ukxmrv, Sean and 4 others like this.
  10. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    One of the two authors of this study is one of the PIs of the PACE Trial, incl. one of the co-authors of the PACE Trial recovery paper:
    Figure 1 shows:

    Chalder fatigue questionnaire (bimodal i.e. 0-11):
    0 at 12 follow up
    0 at 36 months

    The Work and Social Adjustment Scale (0-8):
    just above 0 (0.2 perhaps as average of 5 questions) at 12 follow up
    0 at 36 months

    Figure 2 shows:

    School attendance:
    Post: at 80% (or so)
    At 6 months follow-up: 100%
    At 12 months follow-up: 100%
    At 36 months follow-up: 100%

    I'd still like to know if he reached his academic potential before saying full recovery, but would certainly accept it for "recovery"* unlike the joke recovery definition Trudie Chalder and co use in Psychological Medicine.

    * presuming a sports scholarship means playing sports, which I presume it does mean. This is how they started the case presentations:
     
    Valentijn likes this.
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,672
    Likes:
    10,069
    Amersfoort, Netherlands
    Yes, instead of relying on him saying he's slightly less fatigued, they're looking at attendance and (presumed) current sports ability. And simply asking him (or his parents in this case) "Are you fully recovered, as healthy as you were before you got sick?" seems like something of an improvement over feeling "much better" but not "very much better".

    Not sure why they're talking to his mom instead of him, though. Sounds like he's pretty much an adult.

    Also seems like the BPS crowd is getting a bit desperate, if they're back to the stage of case studies on adolescents (who usually recover without any "help" anyhow).
     
  12. Bob

    Bob

    Messages:
    8,791
    Likes:
    12,106
    South of England
    Just to point out that the treatment they used was 'pragmatic rehabilitation', which was the intervention investigated in the FINE Trial (2010), and proved to be ineffective for adults with CFS/ME.

    From the Burgess & Chalder paper:
    "This case report illustrates how recovery can occur with pragmatic rehabilitation combined with a committed compassionate family based approach."
     
    Valentijn likes this.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    http://rheum.med.ufl.edu/2013/03/27/is-recovery-from-chronic-fatigue-syndrome-possible/


    Most of this article seems to be very similar to info one might get from the press release or abstract.

    However, here are the last two paragraphs (only the second last one is that interesting I think):



     
    Roy S, Valentijn and taniaaust1 like this.
  14. Simon

    Simon

    Messages:
    1,517
    Likes:
    4,847
    Monmouth, UK
    More issues with Physical Function "Recovery" Threshold in the Real Word

    According to the recent paper on CFS/ME treatment outcomes in Clinical practice (NOD), around 25% of patients had physical function SF36 scores in thePACE 'Recovery' range (60+) at baseline.

    They give Interquartile Range (IQR = range of scores withi 25% of the median, so 25% are above this range) at baseline for patients with and without outcome data (they only have outcome data on half of all patients):

    IQR for SF36 at baseline:
    Patients without follow up data: 20-60 (25% above 60)
    Patients with follow up data: 25-55 (25% above 55
     
    biophile, Sean and Dolphin like this.
  15. Bob

    Bob

    Messages:
    8,791
    Likes:
    12,106
    South of England
  16. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    "Recovery" with PACE - are they so ignorant, simple, out of ducking chair mentality, turning their backs on modern science - we've met it before - witches - this time not burned at their stake. Pity they have no experience of the errors of history. Are you firestorm Shephard influenced - a psychiatrist - driven at last to basic medicine - so should you too ( this time bugger the spelling) you clever dicks. Get your facts first. We have all gone through (often without help) this disease - stick to the facts.

    Oh and family all Docs - Profs - Neurology, Radiology, Paediatrics.
     
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    WillowJ, Simon, biophile and 5 others like this.
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Am reading through them now myself...

    Letter published were from:

    Reply from Professor White. All the above appear to have been in relation to objective measures for recovery:

    I added some paragraph breaks to the reply to aide readability (hopefully).
     
    Sean likes this.
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,369
    Likes:
    5,848
    Even with six letters, at that length, they still don't come close to covering al the problems, and those that are mentioned can only be briefly referred to. If Psych Med are going to publish such poor papers, they need to make more room for responses.
     
    WillowJ, Sean, Dolphin and 1 other person like this.
  20. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,672
    Likes:
    10,069
    Amersfoort, Netherlands
    Pretty pathetic reply from White & co. ... "Objective measurements don't matter 'cause the diagnosis is based entirely on self-reported symptoms!!!" and "We didn't have a long enough corridor to do a proper walking test!!!!!" and "Maybe 'recovered' fatigue patients just don't want to work!!!111!!!1!111"

    Also gotta love their psychobabble math: "three times as many recovered!" Just think what they could've claimed if 11% 'recovered' according to their BS definition, compared to 1% of their half-assed 'control' group :p

    I think they've backed themselves into a corner, and don't have anywhere left to go. :thumbsup:
     
    Sean, ukxmrv, SOC and 4 others like this.

See more popular forum discussions.

Share This Page