XMRV PACE Professors Swan Song

Michael Sharpe: The territory being fought over is the very legitimacy of the illness.

Patients' organisations have been notably effective in lobbying parliament.

I shall argue it is not just Tony Blair and Frank Dobson who are at fault but perversely patients themselves have played a part in denying themselves this type of treatment.

The majority of patients with Chronic Fatigue Syndrome have no doubt how they prefer their conditions to be seen.

The dislike that all these patients have of 'psychiatric' names such as somatisation and of 'psychological' treatments such as CBT is unfortunate.

Systematic studies have confirmed that patients attending specialist clinics with CFS typically attribute their symptom to organic disease and strongly resist psychological and psychiatric explanations; views contrary to the current evidence.

Indeed the vehemence with which many patients insist that their illness is medical rather psychiatric basis has become one of the accepted hallmarks of the condition.

Central to the controversy is the question of whether an illness can be both genuine and psychiatric.

The battle lines were initially between CFS and psychiatric disorder, but have now been pushed back to between CFS and ME.

For many ME implies not only a 'real illness' but also a fixed and permanent disease like multiple sclerosis (MS).

A diagnosis that the patient finds acceptable has the benefit of offering a coherent label for their symptoms and will reduce the risk that they will embark on a fruitless search for a 'better' explanation.

The symptoms of CFS have also on occasion been given the medical diagnosis of myalgic encephalomyelitis or ME.

The label of CFS avoids the misleading connotations of 'pseudo-disease' diagnoses such as chronic Epstein-Barr virus infection or ME.

There is however some evidence that the condition is most commonly, but not exclusively, diagnosed in young and middle-aged females.

Patients are not the passive recipients of diagnoses; they have their own purposes for the diagnosis they are given.

Diagnoses also have important implications for their ability to negotiate their social responsibilities, health care and disability payments

From the perspective of the patient advocate, this issue is not a mere intellectual diversion but a serious battle.

If that person felt that the medical establishment had got it wrong, and indeed had got it wrong not by mistake but by virtue of a conspiracy to prevent his/her illness being regarded as legitimate, one might become politically active and make a big fuss.

The suffering and disability of patients with CFS may be real - but it is not new.

One-third of medical outpatients have conditions that are defined only in terms of symptoms without the presence of what we call disease.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Category:

Nonprofits & Activism

Tags:

• norman
• swan
• horton
• XMRV
• PACE
• TRIAL
• DWP
• ATOS
• UNUM
• mrc
• wessely
• peter
• denton
• white
• sharpe
• gerada
• chalder
• CBT
• myalgic
• cfs
• cfs/me
• NHS
• AYLWARD
• mikovits
• McClure
• AFME
• AYME
• DLA
• MRC
• me/cfs
• ISRCTN54285094
• 54285094
• Swiss
• Re
• LANCET
• G0200434
• coffin
• nih
• isrctn
• Ioannidis
• false
• research
• published
• finding
• AEGON
• UK
• taxpayer