Immediate response from The ME Association to the latest results from the PACE trial | 1 August 2012

August 1, 2012


In response to the paper published by PlosOne today and the press release issued by the Medical Research Council, The ME Association this evening issued the following press statement:

Dr Charles Shepherd, Hon Medical Adviser to the ME Association, said:

“We have three major problems with these conclusions about the effectiveness of CBT (cognitive behaviour therapy), GET (graded exercise therapy) and pacing.

“Firstly, they do not match the feedback that we consistently receive from people with ME and CFS – where CBT is often found to be ineffective, GET makes the condition worse in around half, and pacing is by far the most effective and acceptable form of treatment

“Secondly, they do not take account of the fact that ME/CFS is a ‘catch all' label that covers a wide variety of clinical presentations and causes – so it is impossible to conclude that one type of therapy is suitable for all'

“Thirdly, CBT and GET are based on the seriously flawed assumption that there is no underlying pathology present and that symptoms are largely maintained by abnormal illness beliefs and deconditioning/inactivity.

“Consequently, it is neither sensible nor cost effective to recommend that CBT and/or GET should be routinely given to everyone with ME/CFS.

“What we desperately need is research into the underlying biomedical causes of this illness and effective forms of treatment based on this research”

Background note

The MEA has carried out the largest ever survey of management options for ME/CFS – over 4,000 people took part.

Results for CBT

Greatly improved 2.8%

Improved 23.1%

No change 54.6%

Slightly worse 11.6%

Much worse 7.9%

Results for GET

Greatly improved 3.4%

Improved 18.7%

No change 21.4%

Slightly worse 23.4%

Much worse 33.1%

Results for Pacing

Greatly improved 11.6%

Improved 59.6%

No change 24.1%

Slightly worse 3.5%

Much worse 1.2%

The report can be accessed on the MEA website at: www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res4.pdf

The MEA is currently conducting an in-depth survey on the use of CBT, GET and pacing – over 1,100 people have taken part so far. This can also be accessed via the MEA website: www.meassociation.org.uk/?p=11824

7 thoughts on “Immediate response from The ME Association to the latest results from the PACE trial | 1 August 2012”

  1. As usual Charles has given a penetrating assessment of the flawed study. 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 , of which Prof Wessely was co author, 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. This was also illustrated by Dr Shepherd’s figures.
    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.

    1. The scores for the PACE trial in what counted as improvement should be given more attention. They were from self-report questionnaires and only measured a tiny 8% overall. The investigators were clearly avoiding the use of a solid objectively defined measures to asses their personal preference for CBT and GET, when they only allowed a 6 minute walking test as a secondary measure. The results for CBT and GET with this are not worth mentioning. I would like to suggest that the funding for this trial should be repaid to patients out of the pockets of the investigators and all positive reports of this study should not be reported by patient groups.

      I realise that Oxford was the only criteria in the PACE trial, but Fukuda is also not an acceptable criteria for ME research. It cannot select a homogenous cohort and does not require a person to have post activity relapse.

      Dr Enlander, can you say how are you studying pre and post exercise immunology and pathophysiology when exercise is harmful to those with ME?

  2. On behalf of Gerwyn John:

    There was no objective benefit of CBT at all compared to no treatment but patients could walk an extra few metres in 6 mins compared to no treatment. Sheppherd should say that statistically significant and clinically significant benefits are entirely different things. PACE is a classic example of statistical significance being hyped when the clinical benefits are practically non existent. The PACE study was designed to test the hypothesis that disability in CFS was caused by a fear based avoidance of exercise and this could be corrected by CBT. OK just to remind everyone CBT produced no objective improvements in functionality. Thus PACE disproved the hypothesis that disability in CFS is caused by a fear based avoidance of excercise.

  3. Thank you, Drs Shepherd and Enlander. As I’ve said elsewhere I am, like every ME sufferer, simply speechless at this latest MRC perpetuation and promotion of GET and CBT as useful therapies. CBT does *not* influence physical symptoms, and GET is often actually harmful, as we all know. After thirty years, pacing – my own version, intuitive and learned – demanded by the illness – is the only way I can cope/manage my symptoms, ever present to a greater or lesser degree.

  4. http://blacktrianglecampaign.org/2012/09/09/dwpunumatos-scandal-professor-simon-wessely-it-is-only-human-for-doctors-to-view-the-publi

    ”It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering”

    – Profesor Simon Wessely.

    “In the meantime, Unum Provident continues to exert its influence, aided by the
    ideological work of the Woodstock group of academics”.

    “People with the “targeted” disorder ME may be too sick to take on board just what is happening and how disastrous the consequences may be for them.

    By targeting those with ME, a dangerous precedent is being set for the refusal of benefits and is aimed at a vulnerable group of sick people who are least able to fight back.

    http://www.rsm.ac.uk/academ/ifdm2012.php

    6th International Forum on Disability Management (IFDM 2012)

    Monday – Wednesday 10 – 12 September 2012

    1) Benefits and incentives for employers
    Facilitator: Ms Joy Reymond, Head of Rehabilitation & Health Management Service, Unum

    D) Cognitive and behavioural therapies for functional and long-term health conditions
    Facilitator: Prof Peter White, Professor of Psychological Medicine, Barts and The London Medical School Presenter: Kate Harri, USA

    3.00 pm
    Keynote: Transforming models of disability
    Prof Sir Mansel Aylward CB, Chair, Public Health Wales and Director, Centre for Psychosocial and Disability Research, Cardiff, Wales

    3.30 pm
    Thematic workshops (delegates to pick one)

    A) How do you persuade the medical profession to change their approach to the models of disability?
    Facilitator: Professor Ewan Macdonald OBE, Head of Healthy Working Lives Group, Institute of Health and Wellbeing, College of Medical, Veterinary and Life Sciences University of Glasgow Public Health
    Presenter: Nikki Brouwers, Australia.

    And so on, and so on.
    It’s a jolly for the disability deniers and those who are convinced we’ve all got “false illness beliefs”.
    Sick of it.

  5. http://blacktrianglecampaign.org/2012/09/11/black-triangle-and-dpac-confront-professor-mansel-aylward-at-ifdm2012-imperial-college-london/

    “Last Tuesday (4th September), during an emergency debate on Atos and the WCA held in Parliament, Kevin Brennan (Lab Cardiff West) demanded to know if DWP Minister Chris Grayling was as concerned as he was ‘ that Atos’s Chief Medical Officer is one Professor Michael O’Donnell, who was previously employed as Chief Medical Officer by the American insurance company, Unum, which was described by the Insurance Commissioner for California, John Garamendi, as an “outlaw company” that has operated in an unlawful fashion for many years, running (disability) claims denial factories.’ Mike O’Donnell was Unum’s CMO for 10 years before he joined Atos in 2010.

    “We strongly condemn the Royal Society of Medicine’s decision to host IFDM 2012. By so doing they have lent an aura of legitimacy to a pseudo-scientific approach to disability that is as far from evidence-based medicine as it is possible to imagine. It is an approach that continues to devastate the lives of patients, scores of whom are tragically no longer with us as a direct result.”

    Extract of letter signed by over 420 people during a 36 hour period, handed to Mansel Aylward and copied to the Guardian.

Comments are closed.

Shopping Cart