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(PACE Trial) Psychiatric misdiagnoses in patients with chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 14, 2010.

  1. Dolphin

    Dolphin Senior Member

    [I don't think this is a particularly exciting study but thought I would note the following: this study used the Oxford criteria (basically 6 months of fatigue, and some exclusions). As the authors point out, a CDC study found a current rate of psychiatric disorders using the SCID of 57% (this used the empiric criteria). As Friedberg & Jason point out in their 1998 book, the SCID finds lower rates of psychiatric disorders in CFS than other screening methods such as the DIS. The figures they quote for SCID studies are: Hickie et al. (1990) 24.5%; Lloyd et al. (1990) 21% and Taylor & Jason (1998) 22%. So the rates of current psychiatric disorders in PACE Trial patients (56%) are very high.]


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    Invisible Woman likes this.
  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Thanks Dolphin. Does anyone know roughly how many studies like this are going to come out of the PACE trial? It was carried out over quite a long period I think. Not reassuring to know that clincians/doctors miss diagnoses and mis diagnose. No wonder they can't spot a retroviral illness when it is staring them in the face.
  3. Min

    Min Guest

    They seem to have 9deliberately) overlooked the fact that using the Canadian Consensus Criteria instead of the Oxford Criteria would have given them a sample of patients with neurological ME, not a sample of patients with psychiatric disorders.
  4. oceanblue

    oceanblue Guest

    Well, that is an interesting window on PACE trial participants.

    Does anyone know if having a nurse rather than a psychiatrist administer the SCID is likely to bias the results one way or another?

    What would be really good to know is how many of the Oxford-criteria diagnosed CFS patients also meet the CDC 1994 criteria - since the PACE trial categorised patients by several different criteria, the researchers would have this information available. Then we could see how patients who met Oxford criteria but NOT CDC criteria compared with CDC-criteria patients, perhaps the latter would have fewer pyshciatric diagnoses?

    Using a cut-off of 65 for the SF-36 PF scale does seem quite high, though still lower than the 70 used in the new CDC Empirical criteria.

    Again, would be good to know the SF-36 PF scores for the group of CFS patients included in this study - are we looking at another high-functioning group of patients? Sigh.
  5. Dolphin

    Dolphin Senior Member

    It'd also be interesting to know the characteristics of:
    to see if they are any different. We may or may not get some info on this in the full paper. Of course, perhaps some ME/CFS patients would not get themselves referred to a PACE centre.
  6. Enid

    Enid Senior Member

    Psychiatric Misdiagnosis - are they begiining to see the light. !
  7. oceanblue

    oceanblue Guest

    Yes, were they Oxford-criteria confirmed or not? And the number of people who declined consent seemed quite high to me (despite simply being described as a 'minority' in the paper) and perhaps as you imply are different from those patients who consented.

    Presumably the full PACE paper(s) will give more detail.
  8. Sasha

    Sasha Fine, thank you

    I had a consultation at an ME/CFS specialist NHS clinic at the time they were recruiting for the PACE trial. I was told I would be eligible, based on my symptoms & history, but that if I took part I would be limited to the treatment in that particular arm of the trial rather than being able to have personalised treatment. I think (long time ago now) that if I'd been randomised to one of the arms it would have involved me coming to the hospital regularly for group sessions (of CBT? can't remember) and because I was too ill too attend the hospital more than that one time they thought it wouldn't be physically possible for me.

    So, in other words, my being so ill ruled me out of participating. I imagine a lot of severely ill CFSers who would have fitted the Canadian criteria (as do I) might have been excuded on this basis.

    I don't feel that there was anything sinister in the behaviour of the people I was dealing with; I think they wanted to recruit to the trial but realised that there were practical limitations and didn't want to push very sick patients into something they couldn't cope with (I realise other's experiences may well have been different!). However, this strategy would lead to under-representation of true ME/CFS patients if genuine PWC are more disabled than those misdiagnosed with it but who have other disorders.
    Invisible Woman likes this.
  9. Dolphin

    Dolphin Senior Member

    Interesting. I wonder were you counted or not.
    There is a category, "judged unable to comply with the protocol" (n=19 and n=3) - I wonder whether you were counted. They might not like this category to have to many people.

    They also have "contraindication to trial treatment" (n=15 and n=1) - wonder what that is.

    Another category I'm interested in is, "no current Oxford diagnosis of CFS/ME" (n=228 and n=2). That seems very big numbers in terms of the 605 people referred with a possible diagnosis of CFS/ME to the service. More information on what these people had would be interesting. Are they excluding people with ME-type symptoms? And if so, what proportion.
  10. Min

    Min Guest

    I've found Action for ME's statement of support for this incredibly expensive UK taxpayer funded nonsense:

    "PACE RESEARCH STUDY – a statement July 2004

    Various comments have been made by individuals and other organisations about our support for the PACE study. We are pleased to explain our position.

    Action for M.E. has found from repeated surveys of its membership that Pacing has been the approach that people have found of most benefit in managing the illness and helping toward recovery.

    The Chief Medical Officer’s Working Group listened to the Action for M.E. surveys and the contributions of the Group’s Members and for the first time acknowledged the usefulness of Pacing – along with other rehabilitation approaches used in the NHS.

    But the Group acknowledged there was much that was still unknown about the effectiveness of all the approaches and recommended a research trial comparing them.

    "Because of the shortage of good research evidence of the effectiveness of pacing, there is an urgent need for randomised controlled trials of pacing therapy, particularly in early illness (for example, in comparison with rehabilitation therapies such as cognitive behavioural therapy and/or graded exercise, and other forms of support such as counselling)."

    The Report including this key finding was accepted by all the members of the M.E. Alliance

    Subsequently Action for M.E. undertook further surveys that showed members do want research into and more information on Pacing.

    Accordingly, and having checked that a study would not divert funds from our members overall priorities to find the cause and a cure for M.E., we agreed to support a trial comparing Pacing with other approaches.

    It is not true – and never has been – that the funding of PACE has diverted money away from other M.E. research.

    Chris Clark"
  11. Dolphin

    Dolphin Senior Member

    I was on a list (IMEGA-e) and we challenged Chris Clark on these sorts of statements.

    AfME (presumably him but I remember that exactly but know AfME did) actually wrote a letter to accompany the application for the trial to the MRC.

    If one wanted people to prove pacing was good, one wouldn't pick a trial run by Peter White, Trudie Chalder and Michael Sharpe who actively dislike pacing. Peter White and Trudie Chalder resigned from the CMO report because it was put at the same level as GET and CBT (MS was involved so couldn't resign). And one wouldn't have them compare it to GET and CBT based on GET.

    And the thing is that people shouldn't really need evidence to pace. Just disprove GET and CBT based on GET.

    CC was actually a bit close to PDW at this time - I heard that they even played a game of golf together although it could be wrong. CC didn't have any particular connection with ME (i.e. didn't have it nor did he have a family member with it) and so could end up being misled more than many (who would be insulted by a lot of what PDW, TC and MS say and so instinctively would be on their guard with them).

    CC also around this time stopped the AfME research fund (they had funded some good research in the 90s). He sold it to people that if they lobbied they could get millions. People might remember the 1% campaign. An examination of the figures at the time showed this was unlikely [e.g. MS was getting 1-2m from the MRC (11-13m was being raised from research by the MS charities), biggest was breast cancer with 11m, prostate cancer was less than 1m as I recall at the time]. A "reasonable/fair" amount might be a few hundred thousand a year at the time (I'm a bit out of date now on MRC). And really to get funding one needs researchers to be putting in application which means one likely needs private funding from them.

    CC made a right mess of things.
    Esperanza likes this.
  12. Daisymay

    Daisymay Senior Member

    Re- Peter White et al (2010) Psychiatric misdiagnoses in patients with CFS

    May be reposted.

    Here is David Sampson's comment on the recent Peter White et al paper entitled "Psychiatric misdiagnoses in patients with chronic fatigue syndrome" published in the JRSM Short Reports:

    Re- Peter White et al (2010) Psychiatric misdiagnoses in patients with
    chronic fatigue syndrome :Tara Lawn1 ? Praveen Kumar1 ? Bernice Knight2 ?
    Michael Sharpe3 ? Peter D White4 on behalf of the PACE trial management
    group (listed in protocol reference). J R Soc Med Sh Rep 2010;1:28. DOI

    In this paper Professor White notes the high prevalence of co-morbid
    psychiatric illness in a cohort of CFS sufferers (56%) defined using the Oxford
    CFS Criteria and their under-diagnosis by clinicians in a secondary care
    specialist Chronic Fatigue Syndrome clinic.

    The main question concerns the validity of employing the Oxford CFS
    criteria in this study. Rates of co-morbid psychiatric illness in ME/CFS patients
    are known to be affected by diagnostic criteria which clearly influence
    patient selection (Jason, 2004).

    In assessing the validity of the Oxford CFS criteria it is interesting
    that Professor White himself noted in his original Lancet paper (White, 2001)
    examining various CFS criteria that: "both mood disorder at 2 months and
    emotional personality (neuroticism) predicted Oxford-defined CFS...These
    predictions of CFS were related more to having a co-morbid mood disorder than
    to having CFS itself".

    What is of critical importance is the fact that the strongest determinant
    of an "Oxford defined CFS" are mood disorder and premorbid psychiatric
    disorder/GP attendance in year before onset- all of which are predictors of
    mood disorder/psychiatric illness quite independently of a fatigue syndrome
    ( see Sampson, 2010).

    If such Oxford defined patients are ME/CFS patients who happen to have
    developed depression/psychiatric illness subsequently to CFS itself then
    premorbid psychiatric history would not be such a potent predictor- however it

    This demonstrates yet again that not only do such broad criteria fail to
    exclude patients with primary psychiatric diagnosis in the absence of
    physical symptoms (Stein 2005, Jason 1997, Sampson 2010) but that these criteria
    may be better at selecting such patients than ME/CFS patients per se.

    If both ME/CFS and mood disorder/psychiatric illness were synonymous this
    would not matter- however they are not. The genetics of ME/CFS,
    hypothalamic-pituitary-adrenal axis function, quantitive EEG and brain blood flow on
    SPECT all differentiate between CFS and mood disorder/depression (Stein,

    This suggests that at very best the Oxford CFS criteria are ambiguous and
    at worst misleading and tautological in conception.

    In fact as long ago as 2001 Professor White noted in his study examining
    various ME/CFS criteria "These data support the difference in nosology and
    aetiology between acute and chronic fatigue syndromes (of relatively short
    duration) and mood disorders. They also suggests that the Oxford and CDC
    criteria for CFS should be used with caution or only with stratification by
    mood disorder in aetiological studies".

    David Sampson BSC(Hons),MSc,MBPsychS


    Jason L. et al. (2004) Comparing the Fukuda et al Criteria and the
    Canadian Case definition for Chronic Fatigue Syndrome. Journal of Chronic Fatigue
    Syndrome ,12, 37-52.

    White P. et al. (2001); Lancet, Vol. 358, N.9297; pp 1946-1953 Predictions
    and associations of fatigue syndromes and mood disorders that occur after
    infectious mononucleosis.

    Sampson D.P. (2010) Close Analysis of a Large Published Trial Into
    Fatigue Syndromes and Mood Disorders That Occur After Documented Viral Infection.
    Bulletin of the IACFS/ME, Vol 18,Issue 2, Summer 2010.

    Stein E (2005). Chronic Fatigue Syndrome: Assessment and Treatment of
    Patients with ME/CFS: Clinical Guidelines for Psychiatrists.

    Jason L. (1997). Politics, Science, and the Emergence of a New Disease:
    The Case of Chronic Fatigue Syndrome, American Psychologist; Vol. 52, No. 9,
  13. lilpink

    lilpink Senior Member

    It has been recently pointed out to me that there IS actually something quite interesting that comes out of this paper - . I don’t think this has been noted before but I may be wrong, so please show me the link if somebody HAS previously made this observation.

    The PACE participants here at Bart’s (as for all the other PACE centres) were given the SCID after being assessed for PACE but before randomization across the PACE Trial, and 56% of the Bart's cohort were found to have co-morbid psych problems by the SCID. In this paper White explains that some of these were newly diagnosed, that their diagnoses had previously been missed by the PACE centre clinicians. In fact, 12% of patients had been underdiagnosed by the clinicians. This means that 12% had a new diagnosis of mental problem/s just before randomization for the PACE Trial. Were any of the participants told the results of the SCID? If not, then surely that was unethical? If yes, then that would surely constitute a bias, particularly in relation to the CBT arm?

    In the Discussion in this paper White stresses the importance of diagnosing co-morbid psychiatric disorders because the prognosis for patients can be adversely affected if they’re not treated.

    • So if they didn't tell their patients any positive psychiatric results of the SCID then, according to Peter White, that would presumably be not treating them correctly/unethical?
    • But if they did tell all their patients the test results then 56% of the patients may have then expected CBT to have a positive impact on them in some way, having just been told/freshly reminded of their psychiatric problems.
    • I guess the compromise could have been to only tell the SCID results to the patients who had a new diagnosis via the SCID, but according to this paper that was 12%. So if only these patients were told, then that could perhaps mean a potential 12% swing towards CBT from this pre-randomization intervention?
    Another point here is that the proportion of patients on anti-depressant meds increased by 8% during the Trial. So 12% were newly diagnosed with psychiatric problems and at the same time there was an 8% increase in the number of patients on anti-depressant meds – a coincidence do you think?
    Daisymay, Countrygirl, Wonko and 4 others like this.

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