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The NHS promise; broken. M.E. Myalgic Encephalomyelitis

Have you ever read the NHS promise? Take a day off from Blogging to give it a read; then email to your MP (You may use the text below if you wish.)

By refusing to use and recognise M.E. as a condition in its own right are the NHS unlawfully discriminating against patients in the provision of NHS services?  Sadly the answer is probably yes.  As an M.E. sufferer have since diagnosis by a Neurologist in 2007 I have had no further access to any Neurologist or Neurological team. I have been lumped in with other conditions which cause fatigue.

Myalgia means pain, not fatigue.  The NHS has refused to remove the WHO (World Health Organization) un-supported term “Chronic Fatigue Syndrome” from their website, nor has the NHS provide any Neurology led support for the unfortunate sufferers of this condition.

NHS and Medical council use of specialist advise from outside the field of Neurology is inappropriate and if tested in court may well succeed in any claim against the NHS.

The Nightingale Research Foundation was asked to present findings to the House of Lords and Commons which it did in 2007.  The report was accepted in full.  The Government’s failure to act on the report is a further failure which could be legally tested.

The Brain and the spinal cord carry the signals which make everything in the body work. including pain signals; normal muscle function; the adrenal system; hormones; senses; digestion and energy absorption etc.  This is why ME is a Neurological condition. It is not simply fatigue.

Encephalitis is recognised as a killer. There is no specific treatment for Measles Encephalitis which is a rapid progressive encephalitis caused by a chronic infection with the measles virus, similar damage can be caused by many other viral and bacterial infections and even some vaccines.   The damage from infection and fever can be halted by medication if treatment is started at a very early stages, hours rather than days if treated in hospital.   But about the thousands of others who suffer infections of home and survive chronic infection or whose fever was treated at home? There is no data.

When and if observed Measles Encephalitis is characterized by a history of primary measles infection several normal years (6–15 on average), and then gradual, progressive psychoneurological deterioration, consisting of personality change, seizures, myoclonus, ataxia, photosensitivity, ocular abnormalities, spasticity, general malaise, fatigue and coma. These symptoms match those with M.E. (Myalgic Encephalomyelitis or Encephalitis) even though the M.E. patients previous history of infection is unknown – there is NO REASON for the NHS to dismiss the possibility of Encephalitis causing deterioration of nerve and spinal tissue scars and recognise the Neurological condition.

Common viruses like Hepres Zoster, measles, mumps, polio, hepatitis B, pertussis, diphtheria, measles, mumps, rubella, pneumococcus, varicella, influenza can cause Encephalitis. There remains a black hole in the data regarding low level damage caused by subacute sclerosing and Encephalitis in a population which is aging and where medical professionals have taken the ‘eye off the ball’ for many types of viral and bacterial infection due to wider use of vaccination or reduced presentation of symptoms arising from use of paracetamol and other medication in the community.

Killer childhood diseases may now be survivable with vaccine or home treatment; but that doesn’t mean that scars are not left behind?

Please take action on M.E. (Myalgic Encephalomyelitis or Encephalitis) and ensure Neurological services are available.

Take action to stop the use CFS in relation to Encephalitis. Myalgic means Pain not Fatigue. People with M.E. are not active and suffer unrefreshing sleep; they are not simply ‘fatigued’ by activity or stress.

There have been too many fatalities and too much suffering due to mistreatment and diagnosis.  Please demand action from the NHS.

[insert name]



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