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NICE backs CBT for chronic fatigue syndrome

Long-term psychiatric and exercise treatments for chronic fatigue syndrome are good value for money, a study has found.

Cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are both known to help patients with CFS, also known as myalgic encephalomyelitis (ME).

The new findings show that, given in addition to medical care, they are also cost effective.

Another treatment option, adaptive pacing therapy (APT), was not judged to be good value.

Researchers based their conclusions on the same criteria used by the NHS efficiency watchdog, the National Institute for health and Clinical Excellence (NICE).

NICE makes a calculation based on years lived in good health, known as quality-adjusted life years or Qalys. A treatment costing less than £20,000 to £30,000 per Qaly is believed to represent value for money.

In the study, CBT given in addition to specialist medical care was found to cost £18,374 per Qaly, GET £23,615 and APT £55,235.

Professor Paul McCrone, a health economist from King’s College London, who led the new study, said: “It’s very encouraging that two treatments found to help a significant number of CFS/ME patients are also cost-effective based on existing Nice criteria.

“There is now a strong case for the NHS to invest in these therapies. Our research suggests this investment would be justified in terms of improving quality of life for patients and could actually save costs to society if the impact on family members is taken into account.”

Early findings from the trial reported last year showed that CBT and GET could benefit 60% of patients for whom fatigue was the main symptom.

The latest study looked at cost effectiveness over a period of one year.

Specialist medical care was the cheapest single option. But when benefit to quality of life was taken into account, medical care plus CBT became the most cost-effective treatment followed by GET.

Readers' comments (15)

  • So there we have it

    CBT, GET......STAT!

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  • There has so far been no taxpayer funded research into the underlying cause of the devastating and painful neurological illness myalgic encephalomyelitis; all research funding has been given instead to the psychology of mild vaguely defined fatigue under the meaningless umbrella term 'chronic fatigue symptom'. Such studies are run by psychiatrists known to be working for health insurance firms (who do not want to pay out to M.E. sufferers); these psychiatrists financially benefit from the current 'fatigue' clinics.


    If the so-called treatments graded exercise and cognitive behaviour 'therapies' were effective there would no longer be 400,000 sufferers of myalgic encephalomyelitis in the UK as these 'treatments' are all that is offered. Alarmingly, the numbers affected, a quarter of whom are permanently bed or house bound, increase daily. These patients receive no specialist care whatsoever. A large number of children are affected.


    Rather than being being effective, graded exercise actually worsens the illness, often permanently - exercise intolerance is a diagnostic symptom of M.E. Cognitive behaviour therapy, insultingly designed to help sufferers of an illness classified by the W.H.O. as physical to overcome their supposed 'abnormal illness beliefs' makes no difference at all.


    No other neurological illness is treated solely by cheap psychobabble. How can it possibly be cost effective for this country to treat a neurological illness with nonsense?

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  • Er, as an RMN can I just say CBT isn't psychobabble but an extremely effective treatment

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  • CBT may be extremely effective for psychological conditions; M.E. is classified as a neurological illness.

    The £5 million PACE trial found that CBT and GET only gave an 8% subjective none scientific improvement for those people studied. At the end of the trial they were still profoundly disabled and could not walk as far as someone with major head trauma.

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  • Read this young woman's account of her M.E., from which she recently died & tell me how CBT & GET would have helped her:

    http://www.investinme.org/EmilyCollingridge.htm

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  • Encephalomyelitis implies a general inflammation of the brain/spinal cord. As far as I am aware patients suffering myalgic encephalomyelitis display no such inflammation.

    Many clinicians prefer to use the term "Chronic Fatigue Syndrome" but this term is rejected by many sufferers who don't believe the term adequately reflects their conviction of the "disease" having a biochemical or viral cause.

    The debate will continue.

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  • When severe M.E. sufferer Lynn Gilderdale's body was examined by the pathologist who specialised in M.E., he discovered 'dorsal root ganglionitis' - infected nerve roots - and nodules of Nageotte, which are liitle tombs of dead cells, in her spinal cord. These would have caused her terrible pain and sensory nerve damage. She had been very ill since the age of 14.

    Similar cells were found in the body of Sophia Mirza, an M.E. sufferer who died of M.E. in 2005 at the age of 32, and in the spinal cord of other severely affected sufferers.


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  • From Professor Malcolm Hooper's summary of the Pace trial


    "The PIs themselves concede that:
    “Our trial had limitations. We excluded patients unable to attend hospital”;
    that
    “Results cannot be extrapolated to those who are severely affected”; that “primary outcomes were subjective”
    and that
    “What this trial isn’t able to answer is how much better are these treatments than really not having very much
    treatment at all”.

    What the PIs failed to acknowledge was that their ignoring of the biomedical evidence about the disorder they were
    supposedly studying (breaching the Declaration of Helsinki B11) invalidated the entire trial in that it was not
    grounded on the existing evidence-base and thus contravened the most basic principle of scientific research.

    After a trial lasting nine years and costing £5 million, the PACE Trial has not taken us forward: not only have the results
    been misrepresented, but safe guidance on management options must address the needs of all patients with ME/CFS
    and it is not the case that the PACE Trial results are generalisable to all people with the disorder as claimed by the PIs.

    The problematic analysis and selective presentation of data means that the PACE Trial has failed to provide “high
    quality evidence”, which is an unacceptable outcome: patients, clinicians and tax-payers have a right to expect higher scientific standards from the MRC.

    The PACE Trial failed on a fundamental aspect of clinical research in that the benchmarks used to judge suitability for
    entry to the trial and successful outcomes are patently contradictory.

    The need for independent statistical re-evaluation of the raw data is overwhelming as, without such an independent
    assessment, doubts over the veracity of the claims made by Professor White et al cannot be resolved.

    Furthermore, the post-publication admission by the Chief Principal Investigator that the study was ‘not purporting to
    be studying CFS/ME’ invalidates the whole study which claimed to be addressing CFS/ME.

    Given (i) the inability of the recruitment criteria to distinguish between ME/CFS and psychogenic fatigue, (ii) the illogical
    overlap of the entry criteria with “the normal range”, (iii) the failure of CBT to achieve a clinically useful difference for
    one of the primary outcomes and the trivial improvement produced by GET, (iv) the failure to recognise that an
    “averaged” improvement often masks very different responses to an intervention, and (v) the fact that around two
    thirds of participants who received CBT/GET remained in the lowest functioning 10% of the general population, the
    international ME community wonders why the PACE Trial is being hailed as a “gold standard” study which
    demonstrated the efficacy of CBT and GET for ME/CFS patients (as noted above, although the Protocol refers to it as an
    RCT [randomised controlled trial], The Lancet paper at no point describes PACE as a controlled trial, yet it was described
    in the press release as “the highest grade of clinical evidence” and as “extremely rigorous (and) carefully conducted”),
    which by any standards is risible.

    Despite the irrefutably poor results of the trial, CBT and GET are being actively and inappropriately applied to people
    with ME/CFS; the PACE press release stated that the results suggest: “everyone with the condition should be offered
    the treatment” and that every patient “who wishes to be helped” should be willing to take part in such regimes.
    Non-compliance (for example, if a person has already found that exercise exacerbates their condition) is deemed to
    demonstrate lack of desire to recover, which in some instances has already led to the withdrawal of state and/or
    insurance benefits.

    The PACE Trial was not a scientific study and defies reason but, given the considerable investment (Governmental,
    financial and professional) in its success, it could not be allowed to fail."

    Invest in ME charity

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  • Dr Enlander responds on the MEA website, 2/8/12:

    "Even the criteria of the study cohort are unacceptable, the Oxford criteria formulated by a psychiatric group are not accepted by most researchers in the field.

    The Fukuda criteria... were not used nor were the later Canadian Consensus which included Post Exercise Malaise . This is extraordinary in a study which is relating to improvement of ME/CFS patients after graded exercise in two arms of the research.

    The thrust of financial gain perhaps to the insurance companies and the Government were priorities rather than improvement of the patient condition.

    Little was mentioned about the relapse that we frequently see in ME/CFS patients after exercise.

    Presently we are studying pre and post exercise immunology , pathophysiology and genetics in a study at Mount Sinai Medical School, New York in a privately funded million dollar grant."

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  • ?"The suggestion that CBT or GET reduces patients’ disability is further called into question when the results from the only objective measure of outcome included in PACE, ie that of the 6 minute walk test, are taken into account. While patients in the GET group did show a marginal improvement over the other groups in the trial, the 6MWT scores of the ‘CBT’ group were actually slightly less than those of the standard medical care group and the mean 6MWT scores of all of PACE’s trial groups at 52 weeks after baseline were still below those of patients with various cardiopulmonary disorders and patients with class III heart failure as well as scores of 80-89 year olds, a result which doesn’t exactly scream good health. (8, 9, 10)"
    JohnM on "Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis".

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  • The CFS/MI community scans the horizons of the scientific world. Any "discovery" reported in an obscure (many not peer reviewed) journal will be seized upon providing the "results" meet the pre- determined believes of CFS/MI sufferers and their supporters.

    A good example was the "discovery" of XMRV which was immediately embraced by the CFS/MI community. The subsequent failure of attempts to replicate the research associated with XMRV lead to an outburst of conspiracy theories directed toward mainstream medical science, pharmaceutical companies and doctors.

    Many of the "research" projects funded by charities lack "power" and in many cases are based on poorly formulated hypotheses.

    I sincerely hope that a cause/treatment will eventually be identified but I will not be investing in MI charity funded "research"

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  • What is 'MI'?

    No-one is asking for charitable donations here, merely that this statement by NICE not be taken at its face value by nurses.

    These researchers studied people using a rarely used definition for CFS and by their own admission excluding people with myalgic encephalomyelitis . They did not require people in the cohort to have post exertional exhaustion unrelieved by rest lasting 24-hours or more upon minimal exertion which is a cardinal symptom.

    The PACE trial showed only very modest benefits - only 1/3 of study participants improved. Two thirds of participants received no benefit or may have even relapsed. Myalgic encephalomyelitis patients who have this cardinal symptom of exercise intolerance often experience severe relapses when forced to exercise past the point where symptoms are exacerbated.

    These researchers know this, but the answer as to why they promote GET anyway may lie in the conflicts of interest statements made by the authors in this and other studies. Quite a few of them have financial ties with disability insurance and employers wishing to get out of paying disability

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  • Anonymous | 5-Aug-2012 12:09 pm

    My post (Anonymous | 5-Aug-2012 12:09 pm)
    contained a typo which inexplicably was repeated four times !- My apologies

    MI should have been ME!

    The remainder of my post remains valid

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  • Anonymous says
    The CFS/MI community scans the horizons of the scientific world. Any "discovery" reported in an obscure (many not peer reviewed) journal will be seized upon providing the "results" meet the pre- determined believes of CFS/MI sufferers and their supporters.

    I dont wish to be rude but what about your own possibly unreasonable behavior here seizing apon any dubious "discovery "or theory in the not so unbiased peer reviewed journals many reviewed by psychiatrists and supporters providing a weak and flawed Pace Trial "results" for your pre determined negative beliefs about those who have this illness?

    I sincerely hope that a cause/treatment will eventually be identified but I will not be investing in psychiatry and its theory's when real non flawed scientific research can be done to find real answers after all ME is a serious disease people die.

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  • i am a registered nurse in Canada. i goot sick with EBV at age 39, almost 4years ago, amd never got better, in fact I have become much worse.

    Me/CFS is not a disease of the mind. CBT is certainly used in other diseases such as HIV/AIDS, camcer, RA, and others, but the therapy is certainly not curative in nature, it is aimed at live better with the condition.

    In contrast, the UK psych lobby has disregarded all bio-med research and keep on pushing CBT as the only therapy. the Pace trial was criminally flawed, including tired and depressed people amd calling them Me patients. This current paper is assuming PACE is valid and it's not. They are using propaganda techniques to push their thoughts.

    To those who feel CBT is the right treatment for ME patient, I say, live in our shoes for 24 hours, and you will change your mind.

    I am currently undergoing Rituximab treatments for ME/CFS- the chemo agent given to cancer and Rheumatoid arthritis amongst others. More research is needed, the biomedical kind.

    Patients with ME are the best in telling you what works and what doesn't. Psychiatrists,especially the authors of this paper have huge conflicts of interest, some mentioned, and some hidden.

    Kati, RN

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