Treating chronic fatigue syndrome / Oxford Neuroscience

Cheshire

Cheshire

Senior Member (Voting Rights)
Seems like MS still has friends in the UK at Oxford University:



An ode to Michael's tremendous work (wondering who wrote this, I nearly choked while reading...):

Research by Professor Michael Sharpe and his team from the Department of Psychiatry has revolutionised our understanding of the illnes
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In order to meet the challenge of improving the outcome for patients the team first led a national initiative to establish clear diagnostic criteria for the disorder. Published in 1991 and known as the ‘Oxford definition’ these UK criteria have been influential in getting replicable research off the ground and have formed the basis for subsequent international case definitions.
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Once diagnostic criteria were available, Michael’s team conducted careful clinical studies to help them to understand the illness better from the patients’ perspective.
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In a ground-breaking study, published in 1996, the team reported the first ever randomised clinical trial to identify an effective treatment for chronic fatigue syndrome.
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And the best (this was suposedly revised in 2018!):
This pioneering work has had global impact and CBT is now recommended by the Centres for Disease Control in the USA
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Direct link:https://www.neuroscience.ox.ac.uk/how-we-are-making-a-difference/treating-chronic-fatigue-syndrome
 
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The NIH retired the Oxford Criteria
Continuing to use the Oxford definition (of ME/CFS) may impair progress and cause harm. National Institutes of Health Pathways to Prevention Workshop: Advancing the Research of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome draft statement
CDC no longer recommend CBT or GET
 
Chronic fatigue syndrome (CFS) also sometime referred to as myalgic encephalomyelitis (ME) is a relatively common illness affecting around 2% of the population.
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Really - there are over a million people with ME? I don't think so.
Oh, but I forgot, the Oxford definition also includes tired people.

Published in 1991 and known as the ‘Oxford definition’ these UK criteria have been influential in getting replicable research off the ground and have formed the basis for subsequent international case definitions.
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What planet are they living on?

In a ground-breaking study, published in 1996, the team reported the first ever randomised clinical trial to identify an effective treatment for chronic fatigue syndrome. After one year, 73% of patients who received the CBT reported a significant reduction in their disability compared to only 23% of patients who received medical care alone. This trial disproved the theory that CFS was untreatable and offered patients a therapy based on scientific evidence
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I think I'm going to be sick.

This pioneering work has had global impact and CBT is now recommended by the Centres for Disease Control in the USA. It has also led to a revaluation of how fatigue should be treated in other conditions such as multiple sclerosis.
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Fake news.

Sharpe has hit a new low with this. Oxford University should sack him.
 
My take on the whole write up is that 'they' can see that 'time is up' for the GET recommendation for ME/CFS and are pushing to retain CBT as so much of the 'research' past and present depends on it.

(and not only ME/CFS research).

(see also @Emsho post saying that the Libdems supported removal of GET but not CBT).

This is why I think it is important to know what the content is for CBT used for ME/CFS patients.
ie that it does not tell patients to ignore their symptoms and push through, and effectively encourage graded exercise; that the content is designed to help the patient cope with the illness, as opposed to try and 'overcome' it.

Someone, somewhere needs to raise the whole issue of this blanket use of the term CBT and raise questions about its real effectiveness, or not, in 'treating' specific symptoms/conditions (not just for ME/CFS).
see my post here:
https://www.s4me.info/posts/102843/

see also:
https://www.s4me.info/posts/102452/
 
Sly Saint said:
My take on the whole write up is that 'they' can see that 'time is up' for the GET recommendation for ME/CFS and are pushing to retain CBT as so much of the 'research' past and present depends on it.

(and not only ME/CFS research).

(see also @Emsho post saying that the Libdems supported removal of GET but not CBT).

This is why I think it is important to know what the content is for CBT used for ME/CFS patients.
ie that it does not tell patients to ignore their symptoms and push through, and effectively encourage graded exercise; that the content is designed to help the patient cope with the illness, as opposed to try and 'overcome' it.

Someone, somewhere needs to raise the whole issue of this blanket use of the term CBT and raise questions about its real effectiveness, or not, in 'treating' specific symptoms/conditions (not just for ME/CFS).
see my post here:
https://www.s4me.info/posts/102843/

see also:
https://www.s4me.info/posts/102452/
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Definitely agree with this @Sly Saint it goes back to that thread we had a while back about all the different names they give to CBT/GET including CFS/me clinic style pacing, ME management programmes etc. Just because it is called CBT/Pacing/management of ME doesn’t mean they don’t either blatantly or subtly try to prompt you to up your activity. So anything that promotes increased activity based on ignoring symptoms should be off the agenda whatever it is called because it is PACElite
 
It’s astonishing this out of date propaganda has been allowed. It looks like Sharpe trying to maintain face with his Oxford peers to me. Reinforces my belief that PACE couldn’t be allowed to fail because of the egos and size of the investment.
It is sad that hes influencing how fatigue in other illness is being treated, after ignoring fatigue, to then CBT it instead of looking for underlying treatable mechanisms seems very unhelpful. It’s true it’s happening as Rona moss Morris is heavily involved with the MS society but I’d hardly call her work brilliant science, she thinks CBT the solution to everything, there’s no head that cap doesn’t fit and she can produce a weak study to prove it.
 
"Neuroscience" sounds seriously scientific. Is it one of those words like "Nutritionist" which anyone can use? I don't suppose we could ask the ASA to get them to change it to "Oxford Psychobabble", or even "Oxford Quackery"?

"Dr Sharpe, Head of Quackery, Oxford" has a certain ring to it. Why has Oxford got a Quackery Department, and why do they insist on calling it "Oxford Neuroscience"?

What have they done with the real neuroscientists (whatever they are)? Maybe they got mistakenly swept up in the Oxford pogrom of Registered Dieticians and they're all locked in a cupboard somewhere. I reckon there could be a scandal brewing here.
 
TiredSam said:
"Neuroscience" sounds seriously scientific. Is it one of those words like "Nutritionist" which anyone can use? I don't suppose we could ask the ASA to get them to change it to "Oxford Psychobabble", or even "Oxford Quackery"?

"Dr Sharpe, Head of Quackery, Oxford" has a certain ring to it. Why has Oxford got a Quackery Department, and why do they insist on calling it "Oxford Neuroscience"?

What have they done with the real neuroscientists (whatever they are)? Maybe they got mistakenly swept up in the Oxford pogrom of Registered Dieticians and they're all locked in a cupboard somewhere. I reckon there could be a scandal brewing here.
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tiredsam, what are you on? and where can I get some..:D
 
PACE really has revolutionised our understanding of how to treat CFS and ME. We now know we cannot use CBT or GET, that the Oxford criteria is far past its use-by date, and that what matters most is objective outcome measures. Subjective outcome measures in unblinded trials are a nonsense. Also we know that huge numbers of doctors and those claiming to be scientists do not properly scrutinise research or have an inadequate understanding of statistics.
 
TiredSam said:
I'm on my sofa.

I'll let you know when we put it on ebay. It'll probably be after the kids have left home, but I've made a note of your interest.
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I’ve finished my trial sample now Sam, thanks. I’m thinking the dose was a bit high though ? Mrs Sloth said that I’ve been ranting about Jamie Oliver too much and it’s gettimg on her nerves?

I’m interested in placing an order ...is there a discount in place for bulk orders?
 
TiredSam said:
How bulky are you? It's an old sofa and not as stable as it was. Perfect for ranting about Jamie Oliver and many other subjects though.
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Well I thought that the cushion you sent me was odd? Nevertheless who am I to question treatments sent to me by post so I ate around half the stuffing in one sitting. I think I went a bit fast though since I felt a bit queesey afterwards like my liver was detoxing too fast ? so I slowed down and finished the lot in small amounts over the week.

My feedback is that some easy to swallow capsules would help...I would definitely spend more for those.
 
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