Treating chronic fatigue syndrome / Oxford Neuroscience

Presumably this is a departmental advert page so maybe Dr Sharpe wrote it.

 

Perhaps staking things out for literature reviews for NICE.
There will be a lot of positioning..

 

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

 

I am pleased to say that we can be fairly sure the NICE committee will take no notice whatever of this!!

 

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/

 

I wanted to send them a quick email to say that I had taken a screenshot of this page as proof of their promotion of fraudulent research and iatrogenic harm but they don't supply an email address on their 'contact us' page: https://www.neuroscience.ox.ac.uk/about/contact-us

Even that is stuck in the 20th century.

 

Is medical fraud a crime?

 

@ScottTriGuy

Couldn't find a specific email address either, only this general enquiry email: https://www.ndcn.ox.ac.uk/about/contact-us

 

It’s astonishing this out of date propaganda has been allowed.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, what are you on? and where can I get some..

 

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.

 

Oh, can I buy it online?

 

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.

 

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?

 

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.

 

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.