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ME awareness week UK news articles .

pollycbr125

Senior Member
Messages
353
Location
yorkshire
..sufferers are often still totally physically exhausted like theyre operating at about 60 per cent of the real them. A simple walk to the local shops can leave them flat out:

jees i wish i felt like i was operating at 60 % of the real me ........ i wouldnt llike to put odds on what % of the real me im operating at :eek:
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
Damn it, Dr. Sheppard, tell me who went and stole my 50%?

And why aren't there shops within 50 yards off where I live so I can go buy my 45 grams of Cadbury's so I could be well again?

Hi Adam,

There may be few shops for your chocolate cure, but there are always a few lamp-posts in the street for the pole-dancing. You will be well again...
 

IamME

Too sick for an identity
Messages
110
Gradually over time you build up the mental and physical activity. Its important to get the balance right staying in bed all day or exercising hard may slow recovery or trigger relapse.

"Staying in bed all day ... may slow recovery and trigger relapse"

Is he having a laugh? Since when has a pwME got worse through resting (or respecting disability more like) except in Wessely's mind? Even the psychs are struggling to prove deconditioning. That phrase "staying in bed all day" sounds like something the BMJ "lazy bastard" nurses came out with. For the most severely affected it's hardly a "balance" and who decides whether it's "balanced" or not since the term balance tells the onlooker nothing. "building up" sounds more like GET than pacing...

It's a really poor piece that seems to be written as a joke. The UK XMRV study is described as a replication when it was not!
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
"Staying in bed all day ... may slow recovery and trigger relapse"

Is he having a laugh? Since when has a pwME got worse through resting (or respecting disability more like) except in Wessely's mind? Even the psychs are struggling to prove deconditioning. That phrase "staying in bed all day" sounds like something the BMJ "lazy bastard" nurses came out with. For the most severely affected it's hardly a "balance" and who decides whether it's "balanced" or not since the term balance tells the onlooker nothing. "building up" sounds more like GET than pacing...

It's a really poor piece that seems to be written as a joke. The UK XMRV study is described as a replication when it was not!

You know - this really is an appalling article. Shepherd has been in the 'ME game' for years now. He would, surely one would think, be aware of the problems in how ME is portrayed. Yet he consistently manages to write in a way that allows trivialisation and misunderstanding of ME/CFS to continue.

When people analyse his writings - like here, for example- so many little uses of language occur consistently that portray sufferers and what they suffer in this silly little vague way. He continues to write downright inaccuracies (that 'replication' theme he won't let go of) about the condition, promote stupidly flawed research projects such as that chocolate one, the homeopathy one etc. even though he's known to have been a member of 'quackbuster' organisations (with Wessely no less), which makes sufferers appear even more 'wooey' inclined.

What is this man thinking of?
 

Adam

Senior Member
Messages
495
Location
Sheffield UK
"Staying in bed all day ... may slow recovery and trigger relapse"

Is he having a laugh? Since when has a pwME got worse through resting (or respecting disability more like) except in Wessely's mind? Even the psychs are struggling to prove deconditioning. That phrase "staying in bed all day" sounds like something the BMJ "lazy bastard" nurses came out with. For the most severely affected it's hardly a "balance" and who decides whether it's "balanced" or not since the term balance tells the onlooker nothing. "building up" sounds more like GET than pacing...

It's a really poor piece that seems to be written as a joke. The UK XMRV study is described as a replication when it was not!

Is he having a laugh?

He's having a laugh.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
I note that the articles on this site all have an "expert".

But the article says

"Compiled: Karen Williamson"

I'd be interested to know much input Shepherd had and whether he had editorial control over the text or whether he supplied some text and the article was written up the compiler. Since he's flagged it up on Co-Cure he is presumably happy to have his name associated with the content.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Well, I have read The Guardian article twice. It's not perfect on the facts, but it is fair in my opinion. It addresses the controversy part of it, which I wish would get even more attention.

Tina
 

IamME

Too sick for an identity
Messages
110
Well, I have read The Guardian article twice. It's not perfect on the facts, but it is fair in my opinion. It addresses the controversy part of it, which I wish would get even more attention.

Tina

I don't accept that sitting on the fence which is IMO a generous interpretation of the article, is fair for us. It allows people a get-out-of-jail card if they want to continue to believe we're the whingy troublemakers of ill-dom and that the establishment is doing its best with a problem (or people) which is just really "too difficult".

Mention of the NICE JR is one-sided with no response canvassed, ditto Santhouse's quotes. The WPI test is mentioned but curiously, not the IC's kneejerk response test fiasco; I guess that didn't show up in Boseley's quick Googling or maybe she had the "save State embarrassment" filter turned on. No other biomedical evidence gets a mention, leaving the dangerous fallacy of ME the "mystery illness", unchallenged.

Lynne Gilderdale's case is described as "extraordinary", in other words, it's highlighted because it's supposedly an exception to the rule and not in any way representative of the abuse and neglect going on. The CEO of astroturf AfME opines school absenteeism and describes us as "washed out". Whitewashed out, more like.

Most of the negative language used is directed against patients. The word "radicalised" is nowadays most often used in connection with Islamic terrorism, so the psych school scores again with activism misleadingly associated with violent extremism, with a cowardly lack of specificity. Boseley condemns the whole field and entire internet presence of patients as "inflammatory" and too "traumatised" to attract the interest of researchers yet this sort of sensationalism has only ever attracted more and more psychobabblers and quacks, seemingly eager to wag a finger (but we mustn't wag one back and be good little sheep). The fact of the matter is that the field is grossly non-level, you can't use science by itself to solve a political problem, and we would take to the streets like any other civil rights groups if we weren't so damned sick.

So if this were any other hard done by, acutely vulnerable minority, would this "sometimes they ask for it" and "it's all too difficult" subtext be acceptable?
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
I don't accept that sitting on the fence which is IMO a generous interpretation of the article, is fair for us. It allows people a get-out-of-jail card if they want to continue to believe we're the whingy troublemakers of ill-dom and that the establishment is doing its best with a problem (or people) which is just really "too difficult".

Mention of the NICE JR is one-sided with no response canvassed, ditto Santhouse's quotes. The WPI test is mentioned but curiously, not the IC's kneejerk response test fiasco; I guess that didn't show up in Boseley's quick Googling or maybe she had the "save State embarrassment" filter turned on. No other biomedical evidence gets a mention, leaving the dangerous fallacy of ME the "mystery illness", unchallenged.

Lynne Gilderdale's case is described as "extraordinary", in other words, it's highlighted because it's supposedly an exception to the rule and not in any way representative of the abuse and neglect going on. The CEO of astroturf AfME opines school absenteeism and describes us as "washed out". Whitewashed out, more like.

Most of the negative language used is directed against patients. The word "radicalised" is nowadays most often used in connection with Islamic terrorism, so the psych school scores again with activism misleadingly associated with violent extremism, with a cowardly lack of specificity. Boseley condemns the whole field and entire internet presence of patients as "inflammatory" and too "traumatised" to attract the interest of researchers yet this sort of sensationalism has only ever attracted more and more psychobabblers and quacks, seemingly eager to wag a finger (but we mustn't wag one back and be good little sheep). The fact of the matter is that the field is grossly non-level, you can't use science by itself to solve a political problem, and we would take to the streets like any other civil rights groups if we weren't so damned sick.

So if this were any other hard done by, acutely vulnerable minority, would this "sometimes they ask for it" and "it's all too difficult" subtext be acceptable?

Hi IamME

Short answer to your last question - no. There is something singularly odd about the way ME/CFS patients and advocates are treated (abused) which I'm still trying to put my finger on.

Bosely's article followed a rubric that has been common in reporting about ME/CFS for years. Your analysis here is particularly apt. What is it that makes this blatant trivialisation of the illness, this painting of advocates in books, newpaper articles, journals, as extreme conspiracy theorists/nutcases/terrorists, so common, so banal?