RiME: Commentary on APPG on ME Inquiry into NHS Service Provision for ME/CFS, March 2010

RiME: Commentary on APPG on ME Inquiry into NHS Service Provision for ME/CFS, March 2010

From Paul Davis RiME Campaigning for Research into Myalgic Encephalomyelitis

16 September 2010

APPG on ME Inquiry into NHS Service Provision for ME/CFS March 2010

There is a link to the full Report on the RiME Website, see NHS Services Inquiry folder.

The Report was signed by five members of the APPG on ME: Des Turner MP (Chair), Tony Wright MP, Andrew Stunell MP, Peter Luff MP, Lady Mar.

Note: The Committee on Standards in Public Life promotes, ‘high standards in the public sphere through the seven principles… ‘: they include: objectivity and honesty. Have these criteria been met?

Paul Davis paul641@talktalk.net www.rime.me.uk

RiME Condemns APPG Inquiry Report

Problems re. Nomenclature and Classification

In the Foreward P.3 Des Turner writes, ‘… The APPG accepts the WHO Classification of ME (ICD G93.3) as a neurological condition… ‘ However, if one flicks to the back of the Report, 14 out of the 24 sources refer to Government Reports (1), with the Royal College of GP’s Report, connected to CMO Report and NICE Guidelines, being used seven times; sources which are not about the illness described by G93.3. The Inquiry Group also received evidence from PCTs: but ME patients complain that clinics set up following the CMO Report are not about ME; the clinics in Kent, for example, exclude patients with neurological illness; so, is the evidence from PCTs accurate or relevant as far as ME is concerned?

The Terms of Reference say (P. 21):

…ME is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of ME or else adopts the hybrid CFS/ME in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to only use the precise WHO classification of ME above will impede access to information from the NHS that is crucial to the success of this inquiry…

Isn’t it awful?

So (Trying to make some sense of this): On the one hand the APPG on ME says it recognises the G93.3 Code but then writes a report which is substantially based on sources not to do with G93.3 ME?

All along, the former APPG on ME colluded with the Government in the obfuscation of ME; that is, enmeshing a neurological illness (ME) with loosely defined ‘CFS’, an umbrella term that encompasses a range of illnesses and conditions.

(NB The term CFS/ME would seem to originate from the previous Government. The Chair of the APPG on ME 1999-2005 Tony Wright MP wrote 8/6/03, ‘This terminology (CFS/ME) has been adopted as an official term by the Department of Health and CMO’).

The term ‘CFS/ME’ or (‘ME/CFS’), as used in Government or APPG Reports, is an artificial construct – it lacks scientific precision and is unsuitable for diagnosis, treatment and research purposes.

Conclusion to the APPG Inquiry Report

The Conclusion is, overall, positive: P. 17:

…. It is obvious to the Group, that there have been improvements (in service provision – for whom?) since the report to the CMO and publication of the NICE Guidelines…

This contrasts starkly with the contents of copies of evidence sent to RiME (see Appendix B).

Flicking back through the Report, I’m not clear what these improvements are, are you? A feeble case seems to be made for Pacing:

P.8, ‘ These surveys (MEA 2009, AfME and AYME 2008, Norfolk and Suffolk ME/CFS Service 2009) suggest that pacing is.. the best current form of therapy as, when successful, it allows patients to, in at least some aspects, be able to manage their lives… ‘

P. 5 it says, ‘Pacing is an important way of controlling ME/CFS symptoms. It involves a balance between activity and rest and avoiding large bursts of exercise that may cause relapses (9) – (link to NHS website entitled ‘Treating CFS’).

Many ME patients and their relatives find this insulting. What about those who have either died or are bed-ridden as a consequence of ME? Isn’t one of the key features of ME its fluctuating and relapsing course as described by Dr AM Ramsay? So, if ME patients spend the rest of their lives simply ‘managing’ their illness (with no hope of recovery or significant improvement) all is well?

Imagine if a group of politicians wrote a report on illnesses such as cancer or MS advocating Pacing as ‘the best current form of therapy’.

Together with Pacing on P.5 the following therapies are listed: Symptom Management, Function and Quality of Life Management, Complementary Therapies, Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). The last two deserve a closer look…

GET and CBT

P. 5 of the APPG Inquiry Report:

According to evidence to the Group and from the Gibson Inquiry; the Independent ME/CFS Working Group Report to the Chief Medical Officer (CMO); and the NICE Guidelines, there are numerous therapies on offer to patients. The most common are…

Cognitive Behavioural Therapy (CBT) CBT is an evidence-based psychological therapy that is a collaborative treatment approach. When it is used for ME/CFS, the aim of CBT is to reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12-16 sessions (6) (NICE Guidelines – ed.)

Graded Exercise Therapy (GET) GET is an evidence-based approach to improving a person’s ME/CFS symptoms and functioning, aiming towards recovery. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person (8) (NICE Guidelines – ed.) This is followed by an increase in intensity, when the person is able.

But later in the Report:

P. 8 The APPG.. found that much of the evidence suggested that CBT and GET were viewed with concern. Much anecdotal evidence suggested that in a number of situations, both treatments have made patients’ conditions worse….

P. 19 (Recommendation 8) The Group noticed that there were serious concerns about acceptability, efficacy and safety with some treatments such as CBT and GET….

One’s first thought might be ‘what a mess’? But, on reflection, does it mean that the authors’ give more weight to the contents of Government Reports (or one particular report) than the views of ME patients (see below, The Marginalisation of ME patients Views?)?

All of which raises the question, were the authors being objective and honest?

1. The description of GET in the APPG Inquiry Report is exactly the same as what’s in the short version of the NICE Guidelines P. 21; the description of CBT exactly the same minus one sentence (see Appendix A).

Re. the full version of the NICE guidelines, other Government Reports such as the CMO Report and York Reviews are referred to in detail. But these reports like the NICE guidelines are not about G93.3 ME; furthermore, so many trials re. GET and CBT, which find their way into political reports, are inherently flawed in that they use loosely defined criteria (2) so (A) they cannot be exclusively about ME patients as described by G93.3 or the Canadian Criteria (B) they will include patients who feel ‘fatigued’ or who suffer from psychiatric/psychological disorders but who do improve via GET/CBT programs. In order for trials to be accurate as far as ME is concerned, one would need to use the Canadian Criteria (3).

(Re. the NICE Guidelines: didn’t Des Turner criticise a draft of them at the Nov. 2006 APPG meeting saying ‘they were fit for neither man nor beast’ and the Health Department would be unwise to try to implement them? And didn’t the MEA, involved in the writing of the APPG Inquiry Report, also criticise them?).

2. Copies of evidence submitted to Inquiry sent to RiME (see Appendix B):

Part 4 – Out of the 62 controls

Those who mention GET – 40

Effective Treatment 0

Ineffective Treatment 40

Harmful 30

Those who mention CBT – 41

Effective Treatment 0

Ineffective Treatment 41

Harmful 20

On that basis, there would most probably be many more adverse comments in the overall evidence submitted.

3. Scientific studies which point to GET being harmful to ME patients are excluded eg

R Lane et al, Muscle fibre characteristics and lactate responses to exercise in CFS. JNNP: 1998

P Cheney, International Conference of Bioenergetic Medicine, Orlando, Feb. 1999

W Behan et al, Demonstration of delayed recovery from fatiguing exercise in CFS. Europ J Neurol: 1999.

So are studies which cast doubt on the efficacy of CBT eg

F Friedberg, A Subgroup Analysis of CBT studies. JCFS: 1999

A Report by the 25% Group, 2004, said: 93% found CBT unhelpful; 95% GET unhelpful.

F Twisk and M Maes, A Review on CBT and GET in ME/CFS. Neuroendocrinol Lett 2009. The article says that CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.

Not the Right GET, CBT?

Ah, but if GET, CBT has not worked for you up till now, fear not. Maybe it’s not the right type? P. 8 of the APPG Inquiry Report says:

However, it was noted in the oral evidence sessions, that concerns around CBT and GET may be due to the competence of the practitioner and not the treatments themselves. This was the assertion of Dr Esther Crawley, who is a consultant paediatrician and the clinical lead at the Bath ME/CFS Service.

Then in the Conclusion P. 17:

…. It appears that some parties suffer at the hands of their GPs and specialists due to inadequate training. This is possibly why treatments such as CBT and GET are ineffective in some circumstances. The APPG notes Dr Crawley’s statement that these treatments do work… We believe that in some instances the competence of practitioners may need to be reviewed and this must be a fact given serious consideration by NICE when it reviews Guideline 53.

This point is particularly weak. If the authors feel there is a case here, they must substantiate it eg say there is a problem with GET at x clinic or CBT at y clinic and it needs to be changed in the following ways… The point, as it stands, is baseless.

The Marginalisation of ME Patients’ Views?

Several ME patients feel that the evidence that they and others submitted is not accurately represented in the Report; they are disappointed with the attitude of the authors’ in this respect.

P.4 ‘Limitations of the Inquiry’ says:

This inquiry had very scant resources with which to collate and analyse data from the large volume of information that was submitted. We have made no attempt to write up everything in this report. Rather we have satisfied ourselves that the main issues… have been included and that the evidence that we quote is representative…

Which begs the question – Was all the evidence read by the authors? If not, can the Report be objective and honest? Around 400 responses were received (P.4). Are they saying that five politicians with secretarial staff couldn’t among them collate that in nine months?

The Report is not representative primarily in that it does not acknowledge ME patients’ concerns re. matters of nomenclature and classification. Out of the 62 copies of evidence RiME received, 51 said either ME is not Chronic Fatigue or loosely defined ‘CFS’ or that the clinics are not about ME (see Appendix B, Part 5).

The plot thickens… On P.8 it says:

…. she (Dr Crawley) stated that evidence suggests that long term strategies of CBT were successful and that it is dangerous only to accept patients evidence and not detailed scientific studies.

I see. Might we getting closer to the truth, here? Might it be that the authors’ didn’t like the evidence submitted by ME parties to the Inquiry or what they heard about it? That it didn’t fit in neatly with the contents of Government Reports?

Work of ME Experts Excluded

Getting back to the point of objectivity: ME patients are disappointed that the work of certain experts in the field of ME wasn’t included. There are many notable omissions. Let’s look at two:

The late Dr AM Ramsay: Ramsay sets out his description of Myalgic Encephalomyelitis in Chapter 3 of ME and Post Viral Fatigue States, 1988 (RiME website, Newsletter 1). Among other aspects of the illness, Ramsay mentions a range of neurological symptoms, muscle fatigability, alteration to sleep rhythm, and a variable and fluctuating course.

Later in the book he refers to a study of 50 patients by Behan, Behan and Bell 1985; all 50 had gross fatigue made worse by exercise (P.43).

Dr EG Dowsett: Dr Dowsett described CFS as (4):

a facile euphemism for Myalgic Encephalomyelitis, coined in 1988 by Strauss and his colleagues in the USA, which enmeshes this serious and potentially life long neurological illness in a web of trivial fatiguing sub entities, more suited to the psychiatrist’s couch than to the strict research disciplines of neuroimaging or molecular biology.

In another article she says (5):

Apart from secondary infection, the commonest causes of relapse in this illness (ME) are physical or mental over exertion. And, on follow up over decades (rather than weeks or months), the average person so disabled is found to be functioning… dangerously near their energy limits. The prescription of increasing exercise in such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive.

Filling in the Gaps

Arrogantly and erroneously, the former APPG seemed to assume, in tune with the Government, that ME patients per se want the services set up following the CMO Report. Accordingly, it sought to ‘nationalise’ the system. The feedback we get from around the country is very different; the overwhelming number say they don’t want the services, with some saying they hope the funding runs out (see Appendix B and RiME Website: NHS Clinics Folder and recent letters).

Recommendations to the Report Pp.18-19.

2. A national service framework should be created to complement the NICE guidelines.

4. The APPG recommend the DoH take steps to remedy the variation and ensure that each PCT offers a full range of services promptly…

5. The APPG.. call on PCTs, Strategic Health Authorities and the DoH to undertake a detailed review of current services for children and adolescents to ensure that all receive adequate care…

Research

Effective treatment for ME patients will only come through biomedical research. ME patients find it scandalous that the UK is not investing any money in this area.

About half a page (P.16) is given to research: there is nothing there to indicate that the UK Government will start funding biomedical ME Research.

RiME’s Conclusion

Once again ME patients are left disappointed in that it is another report which is not about ME.

The report is not objective or fair (1) too much weight was given to Government sources (2) evidence sent in by ME parties was not accurately represented, particularly points to do with nomenclature and classification (3) there are serious omissions.

The Report reinforces ME patients’ view that the former APPG was primarily a vehicle for promoting Government policy. It was a Group that was not for ME patients but about them.

We fear it could further compromise the case for publicly funded biomedical ME research in that some politicians (especially the uninitiated) might be misled into thinking there is effective treatment out there for ME patients. That is not the message we get from around the country from ME parties; the overwhelming number reject the services, with many saying some of the treatments are harmful.

Totally unacceptable to ME patients is the involvement of Action for ME and the ME Association. Following my question to Des Turner 2/12/09 2009, he confirmed that the only two non-political parties involved in the writing of the Report were AfME and the MEA.

References

1. For information on CMO Report and York Review 1, see RiME Newsletters 3 + 4 (RiME website); NICE Guidelines and York Review 2, Newsletter 9.

2. One example: Sharpe et al, BMJ, 1996, Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. The inclusion criteria specified that patients had to meet the ‘Oxford’ criteria for the chronic fatigue syndrome (which says patients have to have a principal complaint of fatigue). The article was positive saying:

The proportion of patients who reported a reduction in those illness beliefs and behaviours previously associated with poor outcome was significantly greater in the group who received CBT… These observations support the hypothesis that the CBT was effective because of a specific effect in illness perpetuating beliefs and coping behaviour’.

The citation to the article includes studies by himself, Simon Wessely and Trudie Chalder. The article was used in the York Review Report 2002 upon which the CMO Report was substantially based.

3. The Oxford (and CDC) and Canadian Criteria are set out in RiME’s Newsletter 1 (RiME Website). Note: In contrast to the Oxford and Fukuda criteria, the Canadian case definition makes it compulsory that in order to be diagnosed with ME, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.

4. Dr EG Dowsett, Chronic Fatigue and the Linbury Trust Research Portfolio – A Clear Guide to Tunnels Which May Extinguish the Light, 1998.

5. Dr EG Dowsett, Time to put the exercise cure to Rest.

Appendix A

Description of CBT and GET, APPG Inquiry Report P. 5:

Description of CBT and GET, the short NICE Guidelines P. 21:

Cognitive Behavioural Therapy (CBT) An evidence-based psychological therapy that is a collaborative treatment approach. When it is used for ME/CFS, the aim of CBT is to reduce the levels of symptoms, disability and distress associated with the condition. The use of CBT does not assume or imply that symptoms are psychological or ‘made up’. A course of CBT is usually 12-16 sessions.

Graded Exercise Therapy (GET) An evidence-based approach to improving a person’s ME/CFS symptoms and functioning, aiming towards recovery. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able.

Appendix B – see RiME Website, NHS Services Inquiry Folder, Bank of Evidence File

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