Monthly Archives: June 2015

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 We are sorry to learn that you believe it to be outdated and inaccurate.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


Thunderclap


Changes to Amazon Customer Reviews

chrismcmullen

Image from ShutterStock. Image from ShutterStock.

AMAZON CUSTOMER REVIEW CHANGES

Amazon is implementing changes to the customer review system in the US.

News of this change was recently announced in this c/net article.

The new customer review system uses a machine learning platform.

What does a machine learning customer review platform mean?

  • The system will gauge which customer reviews are most helpful.
  • The customer review system will be dynamic.
  • The average star rating will be weighted by helpfulness.
  • Verified reviews will have an edge toward helpfulness.
  • Newer reviews will also count more toward helpfulness.
  • Customer voting still impacts helpfulness.

So, exactly, how is this different?

  • Average star rating may change, since it will be weighted by helpfulness. The most helpful reviews will carry more influence.
  • Customer voting isn’t the only factor that affects helpfulness. Newer reviews and Verified reviews will carry more weight. There are probably other factors entailed in the “machine-learning.”

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Landscape | Sunset over trecime di Lavaredo


George Macdonald Fraser on his Tripe

#simpleadvice to #selfpublisher or #editors from George Macdonald Fraser #flashman ow.ly/O7xfH

George Macdonald Fraser 1925-2008
His old typewriter from the Glasgow Herald come up for sale at auction recently.
“It may be tripe but it’s my tripe – and I do urge other authors to resist encroachments on their brain-children and trust their own judgment rather than that of some zealous meddler with a diploma in creative punctuation who is just dying to get into the act.”

Book One From the continuing Adventures of Falstaff Wild

Extract:

Falstaff Wild got up and poured himself a drink. He felt sick. He looked at Minami in a new light, he didn’t look right. The Japanese man was far too friendly. Maung as a Burman was too accepting. Surely it wasn’t too incredulous that Minami, as a Japanese, was lying? Except Maung was Asian and seemed to trust his fellow Asian and his fellow journalist, the Japanese Minami.

Minami had either gone native, which seemed unlikely, his newspaper could recall him at any time or he was a spy worming his way into Burma society. A man with a mission in Burma and nothing to do with him at all; not part of the pursuit that had brought down the Japanese on the town. Selfishly he smiled with relief.

Falstaff’s first thought was one of joy. Could it be true he was no longer a target himself? Standing he reached for the bottle, thinking it over. He had escaped, but what did Minami’s presence mean?

If Minami said one word about co-prosperity, he’d know what he was about he decided. Falstaff realised he was standing staring at Minami with the bottle in his hand. He wished he could smash the bottle into the Japanese reporter’s face.

“I’m sorry, I’m being rude, can I offer you another drink?” Falstaff said at last. “Good health!”


Review: The Pearl Diver (Seven Worlds Saga Book 1) by S. Elliot Brandis

Michael Patrick Hicks

Pearl_Diver_FinalAbout The Pearl Diver

I’m Elsie, from the planet Caelum.

It’s 96% ocean, but that’s okay. Out of all six planets (or seven, if you believe the myths), we’re the only people with gills. I can breathe underwater for minutes at a time, discovering the secrets of the deep-sea. Diving is my first love.

But not everybody understands.

Each year they run a competition—a single black pearl is dropped into the ocean, and graduating students dive to find it. It sounds easy, but it’s not. The ocean is a dark and dangerous place, with caves, crevices, and flesh-eating creatures. Some years, not everybody survives.

It’s how my brother died.

My parents won’t let me compete. At times it seems like the whole island is against me. I don’t care. I will enroll, win, and gain the ultimate prize—a job diving on the head planet of the entire system. I’ll do…

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