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I have difficulty seeing the problem with this. As I understand it, that old trial by Goudsmit and Ho Yen used pre-emptive rest which probably meant patients were instructed to rest completely (no reading or tv but more or less doing nothing) even though they felt they could do more without...

I think you might be confusing preemptive rest with normal rest periods. Preemptive rest is resting when you could easily do more, believing that this will help the body to heal itself. This was an aspect of Adaptive Pacing Therapy as used in the PACE-trial. Jason and Goudsmit criticized this...

Ok, but regarding NICE I don’t think it’s not in our interest for pacing to become something anyone can fill in according to personal preferences. Especially if there’s a research group (Antcliff et al.) that includes graded activity in its definition of pacing. If we were to say against NICE...

It was. I think both Goudsmit and Jason developed the principles of pacing (independently of each other) on the basis of patient input and in collaboration with patient organisations. This form of pacing has been distributed among patient organisations and has been used in research. I don't see...

I don't think we have to do this, because we can only share our personal experiences with pacing and that of the fellow ME/CFS patients we know. When it comes to advising the NICE committee, I think we should simply refer to how pacing/energy envelope theory for ME/CFS is defined in the...

The point I wanted to make was that pacing in ME/CFS is very different from pacing in the chronic pain literature. It was not intended to define pacing as used in ME/CFS, as I know there is not a general agreement on the subject. I think we should not try to redefine pacing according to our...

Muscle cramps may be an inadequate term, but this is how the consensus document describes it: "Minor and transient symptoms which do not make the person feel unwell may be ignored. Typical cues that patients have exceeded their ‘limits' include the onset of muscle weakness, muscle stiffness...

I would like to make the following point about pacing. Like the previous NICE document, this guideline will probably mention pacing, perhaps not as a treatment but as something patients find helpful. I think it’s important to specify what is meant by this. Because pacing in the chronic pain...

The diagnosis of ME/CFS was not confirmed by the research team. Instead they looked at all patients who've received the ICD9-CM code 780.71 for CFS in the national insurance files. in ICD9-CM CFS was listed under signs and symptoms instead of a neurological disease. Research has previously...

So these were 61 ME/CFS patients from the Bateman Horne Center whose blood samples were shipped to the University of Toronto. There they looked at (1) immune markers (2) genetic and (3) epigenetic variation in comparison to 48 healthy controls. Unfortunately the analyses seem to have yielded...

From watching the video it looks like the authors of the hoax are more concerned with political bias than with poor scientific methodology, hence the focus on gender studies etc.

I agree with @adambeyoncelowe that this is a positive development. The document is quite all right: it lists the problems with GET and CBT, asks for biomedical research and that says definitions without PEM such as Fukuda or Oxford should no longer be used in either research or clinical care...

Leslie O Simpson is the pioneer of this theory. He wrote a book on red blood cell deformability and capillary restriction in ME together with Nancy Blake. It’s called Ramsay’s Disease. Myalgic Encephalomyelitis (Me) and the Unfortunate Creation of 'Cfs'(2013). His studies go back as early as...

IMHO, This is the only method in which the category of medically unexplained physical symptoms makes any sense. Instead of speculating about a common underlying cause (somatization, stress, central sensitization), the study investigates the challenge to deal with medical uncertainty. There are...

Lol. So let me see if I've got this right. 1) Larun et al. publish a flawed review. 2) Courtney and Kindlon point out their mistakes, but Larun et al. simply ignore them. 3) Instead of retracting the review, Cochrane gives Larun et al. the chance of a resubmission. They mess it up. 4) And now...

So why is the document only visible for members? Can only members download documents on this site? Sorry for the confusion.

Really? The thread is open to non-members, no? Or is it because only members can download documents?

I don't think this study found something robust. They themselves highlight that differences were minor... It's exciting though to have a Chinese research team studying mecfs. Lets hope they will stick around!

Yes. I mentioned this in the document where I've summarized information about the committee members. it can be found here: https://www.s4me.info/threads/information-about-nice-committee-members.6625/

Hmm, I doubt it. If they had 5 measurements for all these subjects then they would probably have reported it this way.