ME-is-real petition: Government’s response

http://petitions.pm.gov.uk/ME-is-real/

We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

Submitted by Konstanze Allsopp – Deadline to sign up by: 22 January 2008 – Signatures: 8,481

Deadline reached

More details from petition creator

The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits.

http://www.pm.gov.uk/output/Page14656.asp

Read the Government’s response

There is no established cause of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). A number of different potential aetiologies including neurological, endocrine, immunological, genetic, psychiatric and infectious have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization classifies CFS/ME as a neurological illness, but we recognise that many others working in the field of CFS/ME believe that until research further identifies its aetiology and pathogenesis, there is a risk of restricting research into the causes, mechanisms and future treatments for CFS/ME. What is important to recognise that CFS/ME is a genuine and disabling illness and health professionals must recognise it as such.

As will [sic] all serious illnesses, it is important that patients, their families and the healthcare professionals looking after them have the best scientific information available and the PACE trial has been designed to help them decide for themselves what treatment is likely to be best from them. There is currently very little information about the relative benefits of cognitive behaviour therapy (CBT) and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach.

The aim behind CBT is to support a sustainable improvement in functioning and adaption to illness, via gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can help the patient cope confidently with their illness and help them adjust to some of the consequences of being unwell and to feel more in control of their illness. In common with other illnesses such as cancer where it has been successfully used, its use does not imply that the cause of the illness is psychological.

As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided before decisions are made to offer and accept the treatment. It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result.

The Medical Research Council’s support for the PACE trial does not mean that money is not available for biomedical research and the Council remains committed to funding scientific research in all aspects of CFS/ME. Nevertheless it is important to maintain high standards in funding decisions and the MRC maintains a rigorous a decision making process, only funding research that is likely to make a significant contribution to knowledge and is a good use of tax payers’ money. The decision to reject proposals is taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base.

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