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Good article on Jen's film Unrest in The Telegraph today 24th Oct

Countrygirl

Senior Member
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TELEMMGLPICT000144110070_trans_NvBQzQNjv4BqaoMNi4kgGP0fXgnKocWr3ENXpI3M5YOpD9gt2A8e_oA.jpeg

Filmmaker Jennifer Brea in London last week CREDIT: ANDREW CROWLEY/TELEGRAPH

http://www.telegraph.co.uk/health-f...y-perceive-chronic-fatigue-syndrome/?WT.mc_id

24 OCTOBER 2017 • 7:00AM
It has been more than 60 years since a bewildering epidemic swept through the Royal Free Hospital in north London, rendering almost 300 members of staff incapacitated and forcing the place to close for three months.

At the time, in 1955, the mysterious, polio-like outbreak (called simply ‘Royal Free disease’ for a while) had no obvious cause, certainly no cure and varying symptoms – extreme tiredness, headaches, sore throats, depression, inflammation of the spinal cord – in each victim, frustrating doctors more than it fascinated them.

In the same year, the new condition was written up in the medical journal The Lancet as “myalgic encephalomyelitis”, later shortened to ME. The mystery remained, though. By the 1980s, despite further cases having been identified all over the world, the entire Royal Free episode was put down to “hysteria”, while the illness received the dismissive nickname “yuppie flu”. At best, doctors (and employers, and friends and family, and strangers) were sceptical of victims’ insistence their problems were physiological, not psychological. At worst, they were denounced as malingerers.

Today, there are thought to be roughly 250,000 sufferers of ME – also known as chronic fatigue syndrome, though sufferers often find the word 'fatigue' does nothing to help stigma – in the UK, and more than a million in the US, the majority of whom are women, though there are likely many more undiagnosed. It’s a condition that remains starved of research funding compared to other illnesses with a similar strike rate, and incredibly difficult to diagnose or even treat, meaning the lack of understanding and empathy from the general public persists.
 

garcia

Aristocrat Extraordinaire
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UK
"Brea, meanwhile, puts her improvement (to the point of being able to travel and finish the film) down to two antivirals and a drug used to treat related autoimmune diseases, prescribed off-label by doctors in the US"

One of the antivirals is Valcyte. The drug used to treat autoimmune diseases is Mestinon. Does anyone know what the 2nd antiviral drug she used is?
 
Messages
84
Yes good article much better than the skimpy mealy mouthed Guardian piece well done Telegraph

This piece was great. Also loved how Jen was allowed a rebuttal against the coward... Sorry I mean respectable nameless neurosurgeon.

“It’s becoming the case that you’re not even allowed to look into it. This remains an unexplained disorder, there’s a diagnosis based on a constellation of symptoms. Until we have a lot more proof of how the symptoms work, you have to let people look at it from all sides. It’s becoming ridiculous,” he says.

Brea, along with the academics behind numerous studies in the US, strongly dismiss that suggestion, arguing it has long been the refuge of under-pressure academics lacking clear explanation for sickness to blame the mind and soul.

“It was popular to treat cancer with therapy groups in the 70s, because they thought it was repressed anger. Then you get the mass availability of penicillin in 1945, chemotherapy and treatments that make people better, and suddenly that argument falls away. ME – because there are no approved drugs – is one of the last bastions of that school,” Brea says.''

I honestly feel like vomitting every time I see Theguardian writing some piss piece on ME/CFS where they always end up with some fraud who spouts out some unchallenged garbage in the end.

Whereas this is just genius, also makes the guy come off as a complete nut-job. I mean, what possible reason would the man have to not come forward with his name?
 
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CFSTheBear

Senior Member
Messages
166
This piece was great. Also loved how Jen was allowed a rebuttal against the coward... Sorry I mean nameless neurosurgeon.



I honestly feel like vomitting every time I see Theguardian writing some piss piece on ME/CFS where they always end up with some fraud who spouts out some unchallenged garbage in the end.

Whereas this is genius.

The Telegraph have published many articles that I've been impressed with on ME/CFS. This is somewhat at odds with their conservative viewpoint which you'd be inclined to think would be very pro-establishment and tradition. Hats off to all the journalists who've gone the extra mile to write thoughtful articles and listen to patients, I hope it continues.
 

Hip

Senior Member
Messages
17,824
The Telegraph has a conservative stance, but its original tradition was liberal — the old school liberalism that appeared in the first phase of modern globalization/liberalism, the phase from 1850 to 1914. This newspaper's name the "The Telegraph" hints at its original liberal stance: the telegraph was the Internet of its day, facilitating global communications and globalization. I don't read newspapers anymore since getting ME/CFS, but I when I did, I always felt The Telegraph was conservative, but with an injection of pragmatic and intelligent liberalism.
 
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Binkie4

Senior Member
Messages
644
Thank you @Hip. That is an interesting perspective.

I used to be a keen (Manchester) Guardian reader based on the fact that in the 'sit ins' of 1968 ( in Paris, LSE and other UK universities), the Guardian was the only paper to report the event in which I participated accurately.

Either I was mistaken then, or the Guardian has changed its agenda. We have written to the editor, no response. I suspect it needs a campaign including Guardian buyers but they tend to be very committed to the paper. Less open minded than they think perhaps.
 

Hip

Senior Member
Messages
17,824
Either I was mistaken then, or the Guardian has changed its agenda.

The Guardian's in-depth and ornate intellectual style I think sometimes works against the cause to make society appreciate ME/CFS is a real physical disease with a biological basis, because people like Simon Wessely, Suzanne O'Sullivan and the other pseudoscientists who propose an "all in the mind" psychogenic origin for ME/CFS tend to create complex and ornate pseudo-intellectual frameworks to embellish their views — no doubt because these psychogenic views are such silly nonsense with no empirical basis that they feel they have to clad them in a pseudo-intellectual smokescreen to create a superficial air of scientific respectability.

I get the impression that some Guardian journalists are fooled by the pseudo-intellectual smokescreen, mistaking it for high-brow analysis.

So whereas you would expect the Guardian, with its strong pro-science and pro-intellectual credentials, to champion the view that ME/CFS is a real physical disease and point accusing fingers at these silly psychogenic suppositions, some Guardian journalists end up getting suckered in by Wessely's or O'Sullivan psychogenic views, due to their superficial appearance of being scientific.
 
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NelliePledge

Senior Member
Messages
807
The Guardian's in-depth and ornate intellectual style I think sometimes works against the cause to make society appreciate ME/CFS is a real physical disease with a biological basis, because people like Simon Wessely, Suzanne O'Sullivan and the other pseudoscientists who propose an "all in the mind" psychogenic origin for ME/CFS tend to create complex and ornate pseudo-intellectual frameworks to embellish their views — no doubt because these psychogenic views are such silly nonsense with no empirical basis that they feel they have to clad them in a pseudo-intellectual smokescreen to create a superficial air of scientific respectability.

I get the impression that some Guardian journalists are fooled by the pseudo-intellectual smokescreen, mistaking it for high-brow analysis

So whereas you would expect the Guardian, with its strong pro-science and pro-intellectual credentials, to champion the view that ME/CFS is a real physical disease and point accusing fingers at these silly psychogenic suppositions, some Guardian journalists end up getting suckered in by Wessely's or O'Sullivan psychogenic views, due to their superficial appearance of being scientific.
But the Guardian has always taken an anti establishment stance and here they are shoring up the establishment
 

Hip

Senior Member
Messages
17,824
But the Guardian has always taken an anti establishment stance and here they are shoring up the establishment

I have never viewed the Guardian as anti-establishment. They are leftwing / liberal, and liberalism is the establishment these days.
 
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Hip

Senior Member
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17,824
@NelliePledge, did you not notice the major swing from conservative values to liberal values that has taken place over the last say 40 or 50 years, not just in the UK, but in all Western countries? I am not just referring to politics and government, but in pretty much all walks of life. We are living in the neoliberal era; it started perhaps in the late 1960s, and gathered more and more momentum in subsequent decades. Now of course some are concerned this neoliberal era might be coming to an end, with the rise of right wing populism.

But we are not supposed to talk politics on this forum unless it relates to ME/CFS (although I am not sure that the rise of liberalism would come under politics; it's more like a value system that has taken hold of Western society).
 
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NelliePledge

Senior Member
Messages
807
https://en.m.wikipedia.org/wiki/Neoliberalism

The term appears to mean different things in different places

To me having grown up in the 60s and 70s in the UK and then gone through the 80s austerity and deregulation are of the right not the left. The Guardian was a left wing paper. I don't understand how they can support BPS which is so tied up in oppressing patients and denying access to benefits.
 

Hip

Senior Member
Messages
17,824
The term appears to mean different things in different places

It does, but in modern usage, neoliberalism means the re-establishment of liberal values that took place from around the end of the 1960's onwards.



I don't understand how they can support BPS which is so tied up in oppressing patients and denying access to benefits.

The same newspaper may publish both articles which support the BPS "all in the mind" views of ME/CFS, as well as articles that support the opposite view that ME/CFS is a real physical disease with a biological cause. I think it often depends on the journalist writing the article.

Of course, any journalist that falls for the "all in the mind" twaddle of BPS needs to be sent on a refresher course of scientific skepticism (not to mention a refresher course on how corporate interests, in this case the disability insurance industry, can manipulate the agenda); but without toting up the scores for pro- and anti-BPS articles published by the Guardian over the years, and comparing these scores to those other newspapers, it's hard to say whether the Guardian is more pro-BPS than other papers.