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Is chronic fatigue syndrome finally being taken seriously?

Jonathan Edwards

"Gibberish"
Messages
5,256

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
Would somebody please respond to this:

glyndwr1404 Smiffy83
15m ago
01
The PACE trial didn't fail. By no criteria did it fail. I think you just didn't like the results just as the ME Association didn't.

The variance within CFS is likely to include people with post-viral fatigue illnesses. It will also likely include those whose main issue is a psycho-social one. There will be a further subset of people with other types of underlying pathology. The problem that seems to arise with a psychological explanation is the stigma associated with mental ill health, feeling that a psychological explanation is equated with "it's all in your head" (i.e. you're making it up) and so being dismissed by the medical profession and also a general misunderstanding of how our brain/body really works in the population at large.

The experience of CFS is pretty horrific and treatment/diagnosis and patient management probably isn't handled well by many medical professionals who don't really understand it. Not feeling validated by the team treating you seems to be a major issue for people with CFS (and Medically Unexplained Symptoms too) and this leads to a digging in of positions on both sides. It's really not that helpful. The stance of groups like the ME Assoc are unhelpful and hinder, not advance the group they purport to support.

It's really not in anyone's interest to dismiss research like PACE because one doesn't agree with the intent or outcome.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I'm happy with the article, it's written for general readers and there's only so much information they can take in at once without getting bored. I like the fact that the PACE hyperlink leads to Charles Shepherd's Lancet Psychiatry letter so that our case is well presented on that. The comments section is easier to read if you order them by recommendations first, that way all the ignorant trolls sink to the bottom.

I was also impressed by this comment:

"Once dismissed by many doctors as a psychological illness"

Now there is a phrase to chill the bones of anyone with mental health problems.

Perhaps "Once falsely diagnosed by many doctors as psychological illness" would be better, and then refer to the appalling dismissal we face somewhere else. Although the problem really arises because we are diagnosed with psychological illnesses that don't exist, and when we refer to that as dismissal, it can seem disrespectful to people who have real psychological illnesses.
 
Messages
15,786
The causes of this mystifying epidemic were unknown, but pathology findings suggested something had triggered inflammation in the brain and spinal cord, but with no obvious cause, health officials charged with investigating the outbreak two decades later concluded it had been down to mass hysteria. In the 1980s, psychiatrists in the US and UK involved in investigating a similar CFS epidemic in Nevada decided the illness was largely psychogenic, a result of patients believing they were really ill and allowing themselves to become deconditioned. It’s a tag that has stuck to this day. In 2011, the Pace trial – a five-year study of CFS funded by the UK government, recommended cognitive behavioural therapy and graded exercise regimes as treatments for the disease.

Over the past 20 years, though, a handful of scientists have defied convention by looking deeper into the disease than ever before, sometimes inspired by chance events. Professor Garth Nicolson, founder of the Institute for Molecular Medicine in California, noticed a wave of CFS in soldiers returning from the 1990-91 Gulf war, among them his own daughter. “The more we looked into it, the more we found that infections appeared to be the root cause, which was why some of the sufferers transmitted CFS to family members,” he says. “Infections aren’t a universal cause, but they are definitely one of the main contributors.”

Wow, a mainstream media outlet a taking a explicit swipe at PACE (albeit a gentle one)!
 

msf

Senior Member
Messages
3,650
I notice that Hornig seems to think that infection has something to do with autoimmunity in ME.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
@sarah darwins, your link just took me to the Guardian login page.

I think you have to be logged in (or log in again) for those comment links to work. Easiest way to find that particular comment thread is to order by oldest first - the originating comment by Motdoc was one of the first on that article.

edit: apologies. Hadn't noticed you had posted a different link, @GreyOwl.
 
Last edited:

Yogi

Senior Member
Messages
1,132
This is an fairly good article. It is a good start for this journalist who has I believe not written about it before. It would be good if he built upon this and did a proper guardian investigation like today's Panama tax files.

Here is his Twitter and bio:

https://mobile.twitter.com/dcwriter89

He asked why it took so long:


In one word -
Wessely

Overall good article but this just shows how the low standards have been in UK media.
 

Aurator

Senior Member
Messages
625
I kept expecting to find SMC propaganda in this somewhere, and felt a bit cheated when I got to the end and found that David Cox appears to be his own man ploughing his own furrow. Where have you been hiding all this time, David? How is it that the BPS-school Ringwraiths never got to you?

Though I'm pleased with the article, I'm bracing myself for the possibly inevitable counterstroke: some patronising little nuggets from Esther Crawley, perhaps, or yet another irrelevant homily from an evangelical psychiatrist about how undeniably real psychological illnesses are. I think we all know the deal by now. It's not over till it's over.