Comments on the PACE Identifier

by Doris Jones

CFS = ME (‘ME is thought by most to be synonymous with CFS’). This statement is misleading; it applies only to naïve, uninformed patients/carers and the misled medical/healthcare profession, who are probably unaware of the fact that CFS means different things to different people, i.e. notably that CFS in the UK has been equated with ‘Chronic Fatigue’ (states) and (re)classified in the UK’s 1^st edition of the Guide to Mental Health in Primary Care as a mental disorder under F48.0, whereas ME=ICD10-CFS are classified as neurological diseases under G93.3.  The 2^nd edition of this Guide, apparently just published and renamed ‘Guide to Mental Health and Neurology in Primary Care’, carries a revised classification, which comes, however, with a very telling and again misleading proviso, i.e. that ME/CFS has 96% overlap with neurasthenia (one of a number of syndromes defined as states of chronic fatigue), which is classified under F48 – mental and behavioural disorders.  Same section, last para: Alternative approaches, including bed rest, adjustments to diet and taking supplements, have been found to be much more helpful than either CBT or GET, which respectively were shown to be the least effective and most harmful approaches in 4 different independent surveys on almost 3100 patients, prepared for the CMO’s Working Group on CFS/ME.  This vital information is totally omitted.

RCTs are not suitable for patients suffering from such complex diseases as ME/ICD10 CFS or related disorders (incl. MCS, FMS, GWS), which almost certainly have individually different aetiological backgrounds and hence require essentially individually different treatment approaches.

It is misleading to talk about any of the proposed methods to be used in these trials as ‘treatments’ – this expression implies that the patient(s) is/are expected to ‘get better’ (i.e. improve substantially or recover completely).  Neither CBT, GET or Pacing achieves this – all may (or may not) help the patient(s) to manage their illness better.  These are simply management or coping strategies, no more, no less. 

Last sentence: ‘drop-outs of trials will be offered appropriate help’ – what kind of help?  Pharmaceutical drugs?

Operationalised criteria for CFS – which?

2^nd para ‘this is a ‘brain-washing exercise’ par excellence and represents an insult to severely (physically) ill patients.

This is crucially important – Inclusion criteria – Oxford criteria for CFS – this by definition excludes patients with WHO ICD10 classified ME/CFS (G93.3) – neurological diseases.

Subjects will be discouraged from starting over the counter medicines or alternative treatments – this is outrageous, as these are often the only methods which have been reported to really make a beneficial difference to patients health, in some cases resulting in complete recovery!

Exclusion criteria – many truly ill ME/ICD CFS patients may well be unable to attend hospital reliably or do the recommended ‘therapies’.

Variables – membership of self-help groups, disability benefits received etc – these are a disgrace – giving the impression patients cannot judge what is best for them and may use the illness as an  excuse to obtain benefits.  Considering many are highly educated people, including teachers and many health care professionals, this is particularly insulting.

Five years funding – this is criminal, considering this concerns two management strategies which have been shown to be least effective and most harmful respectively (CBT + GET).

‘Directed by Professor Simon Wessely’ – how many ME/CFS patients would want him to be in charge of their welfare, knowing his background and past documented history of mock and ridicule of these patients?

 

General Comments

There is no mention in this Identifier of subsequent screening of participants using Fukuda or London criteria – an impossibility in any event.

These ‘trials’ are little more than ‘job-providers’ for certain psychiatrists and their helpers/supporters with unfounded and misguided, but entrenched illness beliefs of the neurological disease ME/ICD10 CFS.  They will do nothing to enhance the understanding of these diseases or help patients in a fundamental and lasting way.  Indeed almost certainly patients with the real disease ME/ICD10 CFS (G93.3) will be excluded from participating in these trials from the outset – the trials appear to be designed with such an outcome in view and thus justifying the statement that there is no such thing as a neurological disease ME (and ICD10 CFS).

This identifier should be made public and widely distributed.  An Injunction should be placed on these trials, pending the outcome of an Independent Public Inquiry, which should be demanded immediately, in my view.

If these trials nevertheless go ahead as planned, I feel there should be a blanket boycott by all true ME/CFS patients.

Some fundamental questions require an urgent answer:

1.   Who/what gives this group of psychiatrists and their supporters the right to impose inappropriate coping/management regimes on severely ill patients, despite the fact that such methods have been shown to either make little or no difference (CBT), or worsen the condition, often dramatically (GET) and in some cases irreversibly?

2.   What was the purpose of setting up the CMO’s Working Group, preparing a complex report, taking into account at least some of the patients’ views and then to all intents and purposes ignoring everything? (and that despite the ‘Expert Patient’ initiatives).

3.   Why are the main UK ME/CFS Charities, and especially their principal representatives, not representing their members properly?

4.        Why is the same group of psychiatrists apparently now also influencing the main US CFIDS Charity, i.e. the CFIDS Association of America? (Co-Cure: ACT Research – CDC funding, 6.4.04 – message from Chris Hunter, Australia).

ED. It is obvious that there are some potentially serious problems that will probably arise from these CFS/ME clinics, that will be springing-up around the UK. We as a national charity will be doing our best to make sure that as patients, that our voice is heard and taken into consideration. Please let us know your thoughts and contribute to the next theme of the Newsletter on the above subject!

 

Champions?

By Daniel Holroyd-Doveton

The Department of Health recently announced the identity of various Champions, who are charged with the task of establishing local treatment centres for people with ME.  I, for one, greeted this list with consternation, particularly after all we have heard about how the situation is supposed to be moving forward for ME sufferers.  However no doubt some will hail this as a great victory. Yes it is - for the psychiatrists.  Although ME is not classified as a psychiatric disorder, they are going to be playing a dominant role in the provision of treatment to an unprecedented extent.  When the list of Champions was released, the Action for ME web site referred to the fact that various specialities are going to be involved. Psychiatry is placed at the bottom of the list. This hardly reflects the situation. 

Anybody can see from the list that the psychiatrists and related professions will be running the show in much of England (Birmingham/West Midlands, Sheffield/South Yorkshire, and Bath/Bristol).  I am astonished that Dr White has been allocated such a massive area (Essex, East London, Hertfordshire & Sussex). This is the man who resigned from the CMO working party because he felt that it was not sufficiently in tune with the psychiatrists' agenda. While the immunologist Dr Murphy will be working with him, my understanding is that Dr Murphy will be playing second fiddle to Dr White.

I do not have any quarrel with the promotion of ME management strategies in general. However major question marks remain (to say the least) over graded exercise and CBT. As someone who has experienced both of these therapies, I can say that often they encourage rather than counter overexertion (which is, to my mind, the central problem with ME). What I would like to see is a greater emphasis on other strategies, based on the experiences of ME sufferers rather than the application of external models, which, to my mind, rest on mistaken notions and stereotypes about activity avoidance and depression. At one unit, I filled in a questionnaire, the result of which clearly showed that I was not suffering from any form of depression. My score was extremely low. However, the literature I was being given, under the auspices of CBT, explicitly stated that it was directed at people suffering from depression. 

The problem with the psychiatric approach is that, because no real weight is given to the physical side of the illness, it is assumed that activity can be raised by 50 to 100% each time, often with counterproductive consequences.  This is clear from the King's College London website at www.kcl.ac.uk/cfs.  Also, excessive emphasis on exercise (apart from the direct damage it can do) can lead people away from functional activity, and thus produce a loss of functioning in the real world.  As one prominent neurologist working in the field commented, 'exercise is for athletes'!

The manner in which these centres are being established strikes me as very elitist.  Who appointed these Champions (odd name!) and on what basis?   I believe that stakeholders are supposed to be having some input but what if they disagree with the Champion?  Will not the psychiatrists be creating services in their own image?  This is not a strategy which is going to win the hearts and minds of ME sufferers.  This is not a strategy compatible with the view of the illness as a multifaceted disorder, requiring the input of different specialists, according to the nature of the case in question. We hear a lot about the importance of a holistic, multidisciplinary approach, but a strategy based on one specialism – psychiatry - is not holistic.  Most people would agree that, in treating ME, it is important to look at the whole person, but it is well-known that psychiatrists systematically downplay the physical dimension of the illness. 

Government policy states the importance of working with patients but for many psychiatrists the patients are part of the problem, not part of the solution.  This is a fundamental flaw at the heart of the policy.  The CMO Report stated that lack of support was a major problem for people with ME.  However many psychiatrists think that ME patients receive too much support!

These centres are going to limit choice for patients in the relevant areas. At present the situation is somewhat random and fluid, as far as securing referrals to specialists is concerned. Under the new system, patients in areas that fall under specific centres will be directed to the centre, rather than a specialist of their choice. This does not represent progress.

These centres are going to be involved in research. But, because psychiatrists are going to be playing such a major role in these centres, we are not going to see a balanced appraisal of the physical dimension of the illness. Instead, we will witness the continuation of the way in which the research agenda is skewed to favour psychiatry.

I am also concerned about the fact that these centres are going to be intervening in community care management. Some people in rehabilitation think that providing care to people with ME encourages disability. If such views are going to influence the policies of care providers (social services departments), the situation for ME sufferers will worsen dramatically.

Given the role which psychiatry has played in stigmatising and trivializing the illness and promoting therapies which make many people more ill, I think that patients are rightly going to be disturbed at these developments.  Many will, no doubt, conclude that if treatment is going to be delivered under the auspices of psychiatry, they will have nothing to do with it.  As a result, many will probably continue to receive no treatment, contrary to the aims of government policy.