1 year M.E. Joke not funny?

To the Daily-mail, UK: ‘editorial@mailonline.co.uk’; ‘corrections@mailonline.co.uk’

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!

Regards

Michael Wormald

Long term M.E. sufferer 25 years and counting

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About Max

Poet, Creative Writer, Essayist, Political Opinionist and Reviewer. Rock and Roll fix it man with two guitars, a spanner, some glue and Myalgic Encephalomyelitis! Michael aka Max struggles to balance his continued ill luck with the limits of his condition. He also is acutely aware of the difficulties facing M.E. suffers who are abused by the system. In addition to poetry and historical fiction Michael also writes delightful and original children’s stories. He is also considering the completion of the first installment of his imaginative historically accurate stories of ex-pats stranded far from home in Asia during War World II, ‘The Orange Dragon of Old Hanoi’ (Copyright 2007, 2014). ‘The Long Hard Highway’ is a collection of poems by aspiring British poet, writer and researcher of historical fiction, and children's author Michael J. Wormald. Self published for the first time on Amazon Kindle 2013. The Call of the Thunder Dragon Novel out now View all posts by Max

4 responses to “1 year M.E. Joke not funny?

  • 1 year M.E. Joke not funny? Response | Like this? Don't; Like this a lot!

    […] to yesterdays post about the Daily Mail Article, I have had an initial […]

  • Mia

    I’m a little confused about your description of CFS. It is not just profound fatigue and it can last your whole life. At this time there is no cure.

    • Max

      Many thanks for the interest. My description is of M.E. Myalgic Encephalopathy. I understand there is confusion out there (mainly because of things like that Daily Mail article).

      I make a big distinction between Fatigue, Chronic Fatigue and CFS – which is Chronic Fatigue Syndrome. [Syndrome doesn’t help one little bit – basically means they’ve stuffed all similar unexplained stuff together and stopped doing proper Prognostics and Diagnostics. Really the data is muddied by the ‘Syndrome’ umbrella so long as CFS term is used.]

      Dr. Byron Marshall Hyde who completed research for the WHO and several governments on CFS / ME; criticizes the term CFS and recommended it NOT be used. That was 2007.

      Where does that leave us? Confused. One group of people with Fatigue (causes known or unknown) and ANOTHER SEPARATE group with long term Pain (some of which resembles fatigue) and neurological symptoms which have lasted more than TWO years without respite. A diagnosis of M.E. requires a Nuro.

      A lot of Family Doctors or GP continue to use the term CFS as does the NHS in general. (BUT NOT THE NURO’s?!) Even worse if the GP uses both terms but doesn’t send you to a Nuro?

      Since there are many causes of Fatigue (I will not use the term CFS here) GP’s should address the cause. i.e. fatigue due to stress; fatigue due following Heart surgery – this group can and do recover.

      Those with M.E. like myself have no cure; and after years of trying have to face the truth that they have a life long condition. (Not easy if your GP is calling it CFS – and failing to give you the opportunity to see a Nuro?)

      I don’t know what your situation is but what I did was keep asking, even if its yourself. I have a sympathetic GP who has taken his own time to keep up to date the M.E. and other developments.

      People get very emotive about this. I got very angry I didn’t want fatigue or CFS and carried on working until collapse – fortunately my wait to see the specialist ended about the same time. They told the difference between ‘fatigue’ and the neurological symptoms I had. I can tell you now, thinking about it I am very emotional – it explained twenty years of recurring pain and why I had never beaten it. I divorced 20 years ago because I didn’t get the right help and my efforts were only making it worse.

      Don’t be confused get answers! Good luck!

      • Mia

        Thank you for the explanation! I was diagnosed with Chronic Fatigue this January. I’ve seen a GP, neurologist, an immunologist, chiropractor, physical therapy, psychologist, and many more! It’s crazy. I’m only 20 years old so it’s been a shock. I’m very sorry to hear about your divorce. My mom had/ has CFS so she understands my symptoms and is patient with me. Most people can’t get their small brains around it..

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