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Parliamentary group hits out at lack of support for ME sufferers

  • 2 Comments

An all-party parliamentary group has criticised the provision of services for people with myalgic encephalopathy (ME)

The inquiry set out to evaluate the extent to which the NHS is providing care for people with ME (also known as chronic fatigue syndrome) in England, particularly in primary and secondary care, and in specialist centres or teams.

Dr Des Turner, MP and chair of the all-party parliamentary group on ME, released the final report of the group’s inquiry earlier this week.

The report sets out 11 recommendations to address the inequalities faced by people with ME.

Dr Turner said: “Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS.

“We are particularly concerned by the failure of many primary care trusts to fund any services for ME/CFS patients, especially children and the most severely affected. We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients’ ability to undertake regular work.”

  • 2 Comments

Readers' comments (2)

  • APPGs have no power and this will be ignored as was the Gibson report into M.E..

    Myalgic Encephalomyelitis has been classified as a physical, neurological illness by the World health Organisation since 1969. A quarter of all 250,000 UK sufferers are house or bed bound and premature death from related conditions (such as the heart disease or cancer that untreated M.E. lead to) are common. M.E. is now known to be cased by persistent pathogens such as Human Herpes 6A, Epstein Barr, Parvovirus B19, chronic Lyme disease etc. These are never tested for and therefore never treated, and the existence of chronic Lyme is denied in the UK. M.E. can be excruciatingly painful and untreated can lead to paralysis.

    The psychiatric profession, who have held a stranglehold on all research and treatment funding into this physical illness since the 1980s, have muddled M.E. up with mild depression and other psychological disorders under the meaningless umbrella term 'chronic fatigue syndrome'.

    The one-size-fits-all 'treatments' offered, cognitive behaviour therapy and graded exercise, have been found by all patient groups to be at best useless and at worst harmful for neurological M.E..

    M.E. remains the only neurological illness in the UK to be treated solely by psychological interventions.

    Biomedical research is urgently needed to prevent the premature deaths and immense suffering as seen in tragic cases such as Lynn Gilderdale and Sophie Mirza. A diagnostic test is desperately needed so that patients are actually believed instead of neglected and scorned by some members of the medical profession.

    It is appalling that all taxpayer research funding is going to psychological research into the vague fatigue states defined by the Oxford guidelines (over £4 million pounds has recently been wasted on the psychological PACE and FINE trials) instead of biomedical research into neurological M.E. as defined by the Canadian guidelines.

    Research into retrovirus XMRV in America has found it in most M.E. patients, and the same lab techniques have also found it in Japanese M.E. patients. The UK XMRV research has failed both to duplicate either the lab techniques or use the same patient groups as the careful US research.

    There is no reason for M.E. patients to continue to be denied biomedical research and treatment that patients with other neurological illnesses such as MS receive; that they are is scandalous.

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  • Mrs Ann Keen, Under-Secretary of
    State for Health, recently commented that peoplewith Myalgic Encephalomyelitis are not able to donate blood. She said:

    "...people with the
    condition are deferred from donating
    blood as a precautionary measure to
    protect the safety of the blood supply for
    patients."

    So it is accepted that the blood of M.E. patients can infect others. Should nurses not also be protecting themselves by taking the same precautions that they do with HIV patients, especially in view of the newly discovered retrovirus XMRV in M.E. patient's blood? Large numbers of nurses develop M.E.

    (How exactly graded exercise, pacing and cognitive behaviour therapies alone are supposed to cure an infectious illness is a complete mystery.)

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