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CFS patients 'neglected by NHS'

Patients with chronic fatigue syndrome (CFS) are still suffering from neglect within the NHS despite initiatives aimed at improving services for those with the condition, according to a new report.

A survey of services for the estimated 250,000 people in the UK with ME - myalgic encephalomyelitis - or CFS - has shown more than a quarter of primary care trusts (PCTs) do not commission specialist secondary care for people with the condition.

Less than a quarter of the trusts said they provided home visits for ME patients who are too disabled to travel.

The statistics were compiled by the charity Action for ME using Freedom of Information requests to 151 PCTs in England, 14 health boards in Scotland, seven health boards in Wales and five local commissioning groups in Northern Ireland.

The findings were compiled from responses or part responses received from 143 PCTs, 11 Scottish health boards, six Welsh health boards and three health and social care boards in Northern Ireland, the charity said.

It added that it had reported six PCTs and one Scottish health board to the information commissioner over their failure to respond at all to the questionnaire.

Only 37 PCTs, along with one Scottish, one Welsh and one Northern Irish board said they provided home visits for people with the condition.

The charity described the situation in England as “profoundly depressing” given a series of initiatives and repeated assurances from ministers in successive governments that the needs of ME patients would be addressed by local care commissioners.

In Scotland and Wales statements of good intent have been made by each of the governments but so far there has been no evidence of implementing any significant initiative to provide “appropriate” secondary care for patients, the report said.

The study added that progress in Northern Ireland “lags well behind” and the NHS has not yet “even grasped the scale or the seriousness” of the impact of ME on patients and their families.

Readers' comments (5)

  • CFS is a psychological disease. There is no doubt there are associated physical, even biochemical changes. That there are is testament as to how profound is the influence of the brain and emotions on the rest of the body. Which is why healthcare is different to any other 'business' and why the customer is NOT always right. Amazing the energy and stamina that galvanises through this group [CFS] when you challenge their core beliefs. As a senior clinician who obtained a primary medical qualification in 1983, specialist qualifications in 1993 and has worked in 3 different health systems on 3 continents, I can say CFS only exists in cosseted societies where this kind of delusional manipulation of self and others can be 'afforded'. In any society where there is no safety net if you do not work, CFS does not exist.

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  • These comments are clearly based on prejudice, not on any evidence base and are extremely offensive to people with CFS/ME. He does not seem to be aware of NICE Guidelines, published in August 2007, which state"CFS/ME is a relatively common illness: a general practice with 10,000 patients is likely to have up to 40 patients, half of whom will require input from specialist CFS/ME services. Physical symptoms can be as disabling as multiple sclerosis, systemic lupus, rheumatoid arthritis and other chronic conditions". Furthermore WHO classified it as a neurological illness and guidance for the management of this disabling condition exist in Canada, USA, Australia and the Netherlands. As well as ignoring NICE guidance, and WHO classification he obviously doesn't read the BMJ either as a recent study, by Dr. Esther Crawley, published in 2011 showed that 1% of secondary school children missed up to 20% of school because of CFS/ME. He says people who do not work don't get CFS/ME but it is estimated that there are 25,000 children with this condition.
    I feel sorry for the any patients of this GP faced with an alarming lack of knowledge on the evidence on CFS/ME conducted by his own profession. Still its easier to spout prejudice without checking the facts when you post comments anonymously.
    As a parent of an adolescent diagnosed with CFS/ME for the last 5 years and a senior NHS manager I am aware of a considerable body of clinical evidence which refutes the above comments. I suggest a bit of continuous professional development might be useful.
    Mary Parkes

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  • As a parent of a child who suddenly developed serve ME at the age of 10 following a virus I would like to completely endorse Mary's remarks.

    The difficulties we faced then were made worse by the lack of available information for doctors about ME .
    Now we have NICE guidelines - but some doctors are still not using them and making sweeping assumptions about the illness which have no scientific basis.
    My daughter was lucky - we eventually found ME specialists who could help us in supporting her - and she eventually made a complete recovery. Her pen pal with ME - who got no support - is now 16 years later a young woman with severe ME unable to lave her bed.

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  • Dear Anonymous GP
    I do hope that you will tell people who you are so your patients are able to make a choice to go and see another GP if they suspect they have CFS and that you make your views clear to anybody who comes to see you with CFS symptoms.
    Hiding who you are could have serious implications if any of your patients have CFS as I suspect that you're not as forthright in a face-to-face situation.

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  • A subject close to my heart - my wife being a long term sufferer of ME.

    One of the main issues with the initial comment is the basic error made by the first commentator which blurs the boundaries of ME and CFS.

    Myalgic Encephalomyelitis is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3. Myalgic Encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem (a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
    M.E. is primarily neurological, but symptoms may also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several of which are unique to the disease. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.

    M.E. can occur in both epidemic and sporadic forms and over 60 outbreaks of the illness have been recorded worldwide since 1934. M.E. can be extremely disabling and in some cases the illness is fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
    Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
    People with chronic fatigue may be tired because of cancer, Multiple Sclerosis, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.

    We will never afford proper treatment for either sector until we realise they are TOTALLY different issues.

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