OPEN LETTER TO DR. NYE

Dear Dr. Nye,

I have read with interest your recent apology concerning the job description for trainee therapists in Liverpool which has, as you put it, "caused distress and offence to patients".

This is one M.E. sufferer who is unable to accept your apology.

Firstly, although at first glance you appear to have expressed regret for this particular job description, all you have actually apologised for is one aspect:

"information stating that therapists might be exposed to verbal aggression from 'some clients with CFS'".

You say, "As the Clinical Lead ultimately responsible for the job description I apologise unreservedly for this statement (though I was not aware of the wording until after the document had been released)."

I put it to you that, as the person "ultimately responsible" for this job description, it is quite incredible that you were not aware of its wording, which would have had to be sanctioned, if not literally dictated, by you. I'm afraid that the implication that this document was composed by some anonymous clerical worker is simply not acceptable to anyone with a modicum of intelligence.

If, indeed, it is the case that this job description was written without your knowledge, then alarm bells should be ringing at the apparent chaotic and irresponsible state of affairs at the heart of the system of which you are a part.

I would like to take this opportunity to detail for you exactly what it is that any reasonable person, let alone a sufferer of M.E., finds unacceptable about the job description you refer to, as well as that issued by the Epsom and St Helier NHS Trust:

Candidates are being told by the Royal Liverpool & Broadgreen University Hospitals NHS Trust in this job description that "CFS" sufferers have:

"perpetuating illness behaviour"

That the Trainee Clinical Fatigue Therapist will be required to:

"modify predisposing personality style"

That CFS clients:

"experience barriers to understanding" and for some "there can be significant barriers to accepting the changes needed in behaviour, which have to be overcome in therapy"

That the post holder:

"can be required to work frequently in an emotive and demanding environment"

That the post requires:

"intense concentration and prolonged periods of sitting whilst assessing and providing psychological therapy for clients with CFS"

That since:

"some clients with CFS may be resistant to working in a psychological framework there may be exposure to verbal aggression"

There is the further warning of possible danger involved in the job, in that:

"clients are frequently seen on a one to one basis without other staff immediately nearby";

The Epsom and St Helier NHS Trust tells its prospective post holders that the CFS service is:

"for people with persistent fatigue for whom medical intervention is no longer appropriate"

That:

"patients referred to the service often present with complex medical and psychological problems, are highly distressed and may have difficulty accepting and be hostile to the rationale for adopting a cognitive-behavioural approach to the management of their fatigue"

That the CFS Service:

"aims to help people with chronic fatigue to improve their quality of life, reduce distress and health care usage and where possible, return to work through a multidisciplinary cognitive-behavioural programme"

That the CFS Service:

"aims to...extend services to those individual patients who have challenging presentations including high levels of distress and disability, interpersonal difficulties and co-morbid physical and mental health problems"

That:

"patients using this service may have problems of an intimate nature eg sexual difficulties, history of trauma or abuse"

That the post holder is expected to take into account:

"a range of both theoretical and therapeutic psychological models and highly complex factors concerning historical and developmental processes that have shaped the individual or family"

That the post holder is expected to provide:

"appropriate advice on chronic fatigue management to, often highly distressed, patients"

That the post holder is expected to implement:

"a range of psychological interventions with individuals, couples and families"

That the post holder is required to:

"undertake risk assessment with distressed clients and to provide advice to team members and other health professionals on psychological aspects of risk assessment and risk management"

So, taking together these two job descriptions, it is maintained that the hallmarks of a "CFS client" are given as:

perpetuating illness behaviour

predisposing personality style

experiencing barriers to understanding

emotive and demanding

prone to verbal aggression

for whom medical intervention is no longer appropriate

complex psychological problems

highly distressed

hostile to the rationale for adopting CBT

interpersonal difficulties

co-morbid physical and mental health problems

sexual difficulties

history of trauma or abuse

a subject for risk assessment

In other words, M.E. sufferers are portrayed as being emotionally and psychologically disturbed, and potentially dangerous.

This, Dr. Nye, is not simply a case of "causing offence", but of committing serious defamation born of extreme prejudice - prejudice initiated and nurtured by people such as yourself.

You, along with your colleague at the Royal Liverpool Broadgreen Trust, Pauline Powell (Senior Therapist referred to in the above-mentioned job description), were involved in the "Predictors of response to treatment for chronic fatigue syndrome" along with Richard P. Bentall.

http://bjp.rcpsych.org/cgi/content/full/181/3/248

The stated Results were:

"Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment, and dysphoria as measured by the Hospital Anxiety and Depression scale. Severity of symptoms and duration of illness were not predictors of response."

The stated Conclusion was:

"Poor outcome in the psychological treatment of chronic fatigue syndrome is predicted by variables that indicate resistance to accepting the therapeutic rationale, poor motivation to treatment adherence or secondary gains from illness."

The Results and Conclusion above are inextricably woven into the two job descriptions in question - so how can you conceivably claim not to have known of the wording in the one issued by the Royal Liverpool Broadgreen Trust?

It therefore simply beggars belief that you could possibly expect any right-minded person to accept your excuse and "apology".

It is manifestly clear that these so-called "M.E. centres" have been "hijacked" in the hope of validating the pseudo-scientific doctrines espoused by M.E.-psychologisers down the years.

It has been noted that the member charities of the "M.E. Alliance" have made their concerns about these job descriptions known (they would probably have lost almost their entire respective memberships at a stroke, had they not done so) - but it should be understood by all concerned that M.E. sufferers, while we appreciate their help, do not rely on the charities to fight our battles for us.

We have voices of our own, and on this issue we are united: we will not voluntarily be subjected to the obscene brainwashing and mind-control experiments clearly planned for delivery at the "M.E. centres".

The powers-that-be can withdraw, sanitise and re-write all the job descriptions they like, but the cat is well and truly out of the bag, and the whole world now knows it.

You write, "The Liverpool ME/CFS team are passionate about their role in assisting patients recover from this destructive and neglected disease."

If that is true, then it is time for those involved to stop pretending that M.E. is a "psychological" condition "perpetuated" by "illness beliefs" and to put their full weight behind genuine biomedical research and relevant treatment.

Until such time, any "apologies" for the disgraceful attitudes and intentions betrayed by the job descriptions quoted above will ring as hollow as a bell.

Yours sincerely,

John Sayer

The following statement has been sent to me, and I am pleased to make this available to the wider M.E. community

Chris Clark

Chief Executive Action for M.E. / Convener of the M.E. Alliance

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The Liverpool ME/CFS service: an apology

Many ME/CFS sufferers will know that a recent job description for trainee CFS therapists in Liverpool has caused distress and offence to patients. It contained information stating that therapists might be exposed to verbal aggression from 'some clients with CFS'. As the Clinical Lead ultimately responsible for the job description I apologise unreservedly for this statement (though I was not aware of the wording until after the document had been released). Although incidents of this nature are very rare in any patient group, some might think it fair to mention their possibility to trainees joining a therapy service for the first time. Nevertheless, the explicit reference to verbal aggression in the context of ME/CFS was bound to be seen by the patient community as an assault on their integrity. The suggestion that there might be at any stage a breakdown in trust within the client-therapist relationship was deeply destructive and in no way reflects the true ethos of the ME/CFS service either locally or nationally. If there were any point in raising the issue of inter-personal difficulties, it would be to ensure that trainee therapists have insight into their own limitations and can recognise and ameliorate any signs of overwhelming distress in their clients. The job description has been withdrawn, and in due course will be re-written with advice from patient representatives, emphasising the collaborative nature of the patient-therapist relationship.

If this relationship can be further strengthened and developed, then perhaps some good will come from this unhappy episode.

The Liverpool ME/CFS team are passionate about their role in assisting patients recover from this destructive and neglected disease. Our main concern is that patients who might otherwise find our service helpful will now feel reluctant to use it. May we reassure all our clients, present and future, that we will continue to strive for the highest standards of care, and for the best possible relationships between staff and patients.

Dr. Fred Nye

Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre

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