Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal

Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal their daily struggle with the crippling condition

https://www.dailymail.co.uk/health/...eveal-daily-struggle-crippling-condition.html

• It's a controversial condition that has been swept under the carpet for decades
• But myalgic encephalomyelitis (ME) is physical - and is not made up by patients
• Millions of lives across the world are being ruined by the unrelenting condition
• Sufferers often left house-bound, confined to their beds and unable to move far
• MailOnline spoke to three sufferers who spoke about their daily struggle

It's a controversial condition which leaves sufferers house-bound, confined to their beds, reliant on feeding tubes and even needing help to get them in the shower.

But myalgic encephalomyelitis (ME) has been beset by controversy for decades amid claims it is merely psychological.

Instead, the truth is that the condition, also known as chronic fatigue syndrome, is physical - not just made up by patients…

 

"Lives are being stolen..." at least they're beginning to characterize the predicament.

 

Not prepared to click on anything on the Daily Mail or Mail on Sunday website, but it is good that even this ghastly populist tabloid is presenting a more objective account.

 

One of the interviewees makes a good point about ME not being an invisible illness but that it is the lack of knowledge and acceptance making people feel invisible, there is not a test to diagnose the illness but it is often clear sufferers are ill, and there are many illnesses where sufferers will not appear ill to a layperson that are not called invisible

 

The Daily Mail is all over the place with its coverage of ME - some of it's been pretty good, some bad.

In July 2006, journalist, Gill Swain, had written a long article about Lynn Gilderdale, who died in December 2008:

https://www.dailymail.co.uk/health/article-393915/Trapped-bed-14-years-chronic-fatigue.html

Trapped in bed for 14 years with chronic fatigue
By GILL SWAIN, Daily Mail

Last updated at 08:36 05 July 2006

She can't swallow. She can't speak. She's in constant pain. Yet some doctors say Lynn's illness is all in the mind. Read her story and you'll never be flippant about 'yuppie flu' again...

 

strange that there was no controversy until the insurance companies bottom feeding lapdogs created it .

 

There used to be a website, called maybe DoNotLink?, which would allow you to access sites such as the Daily Mail where you might not want to give them the satisfaction of recording your visit. I don't know if it still exists.

 

We are now well over 2500 known biological markers occurring, though we have yet to prove any biomarker/s is/are diagnostic, or even universal. Some biomarkers are at sixteen standard deviations from normal, just not things doctors test for. Those tests doctors use are for OTHER conditions. What we have instead are markers we share with many other conditions, including sepsis and African Sleeping Sickness, but secondary not diagnostic markers, so they are not tested for.

(edit - meant to write sepsis, not MS. Doh.)

 

Our mate Simon seems to have got his knickers in a twist for some reason, bless him.

Code:

https://twitter.com/WesselyS/status/1234129308978962432

https://twitter.com/user/status/1234129308978962432

 

I particularly like Karen’s polite question, which of course he has not yet replied to:

https://twitter.com/user/status/1234153318441721857


@PhysiosforME

ETA the tag

 

I presume it's the 'the mind and the body are one'. So that whether it's physical or psychological does not matter. It is a feed back loop that one affects the other and they cannot be separated. If I'm thinking this through clearly.

This distinction (or lack of) has been discussed on several threads over time if memory serves. I wish there was a really tightly argued summary to refer to when this issue comes up. It seems to be somewhat central to understanding both the BPS and the bio views.

In this case the devil is in the details I think. On the face of it SW is right. But one must dig deeper and define terms as to meaning and understand what is being said as to the concepts involved.

Again, I'm hoping someone with much more brain power than me can throw some light on the topic.

 

How many times can Simon Wessely keep writing this stuff?

 

As many times as Michael Sharpe can be chased away from CFS research by nasty patients?

 

Wesselys objection will be to the notion that "merely psychological" will be stigmatising mental illness instead of pushing the idea that its just as debilitating and serious as physical illness.


Yet at the same time he claims there should be no distinction made whilst also trying to popularise the current obsession with convincing everyone that we are all mentally ill and need to "get talking".

Presumably once everyone has been to the GP and said they feel a bit sad sometimes they too can go on the list as mentally ill and face a future of denial should they ever experience a physical health issue or have the need to claim a benefit or an insurance payment or even dare to try to access health care.

 

Perhaps we could invite him to participate in a moderated thread to explain his views. There are quite a few quotes, fair quotes, that could do with explanation. One can understand a reluctance to join in the sort of shouting match which often develops, but he can never obtain the sort of rehabilitation he seeks without engagement.

 

The reason ME patients don't want their illness viewed as psychological is that their symptoms will be viewed as inconsequential (I.E exercise can't harm you). Like it or not there are distinct concepts of physical and mental in the hearts and minds of the general public (and the medical profession) and these affect how patients are treated. The BPS crowd know this but pretend it doesn't matter.

I once e-mailed Simon Wessely asking him for evidence for his claims that ME is perpetuated by psychological and social factors. He e-mailed me back saying that's like asking "when did you stop beating your wife?".

 

I think you misunderstand Simon. His goal is to distract from the horrible situation patients are in (which he is partially responsible for) and to cultivate his public image.

He would gain nothing from dialogue.

 

I personally wouldn't want to play any part in his rehabilitation, not unless there was an overwhelming benefit to PwME in doing so.

 

That's rather overfamiliar of him.

What do you think he meant by that? That he finds it an offensive question?...