Tag Archives: Encephalomyelitis

1 year M.E. Joke not funny? Press Release

Daily Mail Article Leaves M.E. Sufferers Fuming

Press Release  •  Jul 02, 2015 13:13 BST

From Lancashire UK Michael J Wormald Author and M.E. Sufferer

The original article below, caused out rage on Facebook, Twitter and amongst Bloggers and Health Forums.

The article may have highlighted the inconsistent way in which the NHS and Dept. of Health still refer to the condition as Chronic Fatigue Syndrome (CFS), but made ridicule of those suffering from ‘Chronic Fatigue’ or had been diagnosed with M.E. (Myalgic Encephalomyelitis or Encephalopathy)

27th June 2015 :  Click link Below of Full Copy of Press Release

http://www.mynewsdesk.com/uk/michael-j-wormald-publishing/pressreleases/daily-mail-article-leaves-m-e-sufferers-fuming-1187694

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1 year M.E. Joke not funny? Response

Further to yesterdays post about the Daily Mail Article, I have had an initial response.

“Dear Mr Wormald

Thank you for your thoughtful response to the item about Samantha Cameron’s sister’s description of her period of suffering from ME. We are sorry to learn that you believe it to be outdated and inaccurate.

The account given of ME is based on what Emily Sheffield has herself reported of her experience, which is clearly different from yours. It is not intended as an objective or medical report and in reporting that she recovered in a sudden and dramatic way, there is no implication that she found a ‘cure’ applicable to other sufferers.

The item, which is part of a diary column focussing on celebrities, also summarises what has been the reaction in the past of some people, including professionals, to the condition. It states that the diagnosis ‘has been met’ with scepticism and ‘was dubbed yuppie flu’. It also states that sufferers  ‘tend to be aged between 20 and 40’, when younger and older people are also afflicted.

Therefore while I cannot agree that the article is inaccurate I would like to thank you for taking the time and trouble to send us your views. Please be assured I have forwarded your e-mail to Mr Shakespeare. We appreciate all feedback as it helps to inform our journalists and the editorial decisions we take on a daily basis.

Kind regards

Rehema Figueiredo

Corrections’ Department”

Well here we go again…  M.E. doesn’t “tend to be aged between 20 and 40”.  I’ve never heard or read anything about “yuppie flu” outside of the drivel we get in Newspapers.

If like me you continue to be disgusted about the way M.E. is represented in the Press please post comments about how the original article (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)) Made you feel.

Feedback is greatly appreciated I intend to write about this further.


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