To the Daily-mail, UK: ‘firstname.lastname@example.org’; ‘email@example.com’
I am writing over concerns over the inaccuracies and total absence of credible fact in the article below.
http://www.dailymail.co.uk/news/article-3141161/SEBASTIAN-SHAKESPEARE-stricken-year-says-Sam-Cam-s-sister.html (By Sebastian Shakespeare for the Daily Mail)
A person suffering from M.E. Myalgic Encephalomyelitis, a serious neurological condition, would be very, very lucky to get a diagnosis in less than a year. Let alone find a cure to this incurable condition?!
Encephalomyelitis or Encephalitis, and the pain (that’s what Myalgic means) is diagnosed over a long period where neurological pain and degeneration or inflamation in the nervous system has been observed over a LONG period.
My diagnosis took five years, and explained a period of illness and degenerating health and unexplained pain over a period of 20 years. My medical retirement at 42 has not helped – since I still can’t support myself. Nor is there any cure to be offered.
M.E. Myalgic Encephalomyelitis is NOT fatigue. I wake up with PAIN and go to sleep with PAIN regardless of the exertion in between, there is marked increase in pain on exertion which may require days to get over.
CFS Chronic Fatigue Syndrome is not a useful, or scientific or medical term. The World health Organization and the Nightingale Research Foundation, who presented a report to the Lords and Commons in 2007, have repeatedly called on governments and the NHS to stop using the CFS label; since GP’s, even specialists and Health ministers alike are all liable misuse and misrepresent the term. I would describe CFS, for want of a better term, as a ‘toxic description’ of these two distinct groups of illnesses.
I have the deepest sympathy with people suffering from fatigue –which can be caused by stress, depression, cancer, serious illness or major surgery. Fatigue is recoverable over a long period, or through sustained rest and appropriate rehabilitation.
I’ve had sustained rest, tried the rehabilitation and over the long term, this has no effect on the type of distinct pain I and M.E. sufferers experience. Since the pain is quite distinct and when recurring over a long period it is clear the M.E. is a condition separate from fatigue, the source being narrowed down to neurological, then the diagnoses can be made correctly. This is not generally done in under a year?!
I also have the deepest sympathy for all the poor souls who are floating between two extremes not knowing if they have been given the correct diagnoses by their GP (or more properly a qualified neurologist?)
The idea the M.E. could be championed by someone who has had a sudden ‘miracle’ cure is not funny. This article is in poor taste, ill-informed, and shows a poor standard of journalism.
I hope you will investigate, print a retraction or start over with a better informed source. Try a neurologist? Indeed we have a champion in Byron Marshall Hyde M.D. who wrote the report for the Nightingale Research Foundation…
The problem now is not that the condition is met with skepticism, but that it is met with pure ignorance in the press which is carried over into the NHS and Government. For all out sakes get your facts from a legitimate source!
Long term M.E. sufferer 25 years and counting