The UK and Myalgic Encephalomyelitis
I live in the UK with M.E.. Living with ME is difficult. Everything becomes difficult. Getting out of bed feeling unrefreshed is difficult. Coping with fatigue and pain every day is difficult. It is so often forgotten that every effort is affected – including breath and heart rate. Most difficult of all is coping with life.
For starters the Government and NHS aren’t doing a thing about M.E. as a classified illness. Currently once diagnosed – that’s it; there’s no specialists, no treatment, no hope.
The DWP won’t acknowledge M.E., it currently is not within the set of categories in the DWP or ATOS system… – they still use the old ‘CFS’ category which is a catch all of anything or any one with ‘Chronic Fatigue’ as a symptom – be it over work, Stress, Cancer, MS or other injury.
Under the current system ESA anyone with M.E. is unlikely to recognized as being unfit for work – regards of what the doctor’s say. I’ve been signed off work for over a year and the I do receive full ESA yet as my appeal is stuck in the system. This will only get worse as the rules change.
If I don’t starve to death, or lose my my house before my appeal; afterwards I will have go through the same thing all over again when the ESA rules change. I don’t hold out any hope for the DWP and ATOS updating M.E. as a classified illness – the World Health Organization does; the medical profession has changed tack as well – wary of misdiagnoses claims since presentations to the house of commons and the house of lords told them CFS was a fudge – and M.E. is a separate condition.
Statistically those of my age suffering from M.E. are mostly to die of undiagnosed Heart disease, undiagnosed cancer, or suicide. The lack of support and follow up after the M.E. diagnosis is tragic – this is why secondary conditions are diagnosed too late to save the patient. Lack of support and understanding – its no wonder suicide is the highest killer. Note the death cause is recored as heart, cancer or suicide not M.E. As I wrote above every effort is affected – including breath and heart rate.
It is sad that so little is done or recognized.
Legally there is no precedent to help sufferers. Except one. Euthanasia; since a number of people have now been acquitted of murder charges (for assisted suicide) despite ignoring or failure to get some of the improved mediation available to M.E. suffers. It is alarming the number of case which set precedent!
I ask you is normal in a modern society like ours, to recognize one illness and treat it or more than other – or ignore it altogether?