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I tend to comment before reading fully, and have only just looked at the reference pulled out by @ME/CFS Skeptic above This 2001 letter, co authored by our old friend Simon Wessely, is unfortunately behind a pay wall, but on the basis of the abstract along with the authors and the date of...

First I have a conflict of interest to declare in that I most likely have an acquired non coeliac gluten intolerance, though I can not be certain as I was already on a gluten free diet when tested for coeliac which I did not realise at the time invalidates the test and makes a false negative...

Having more papers with different author lists creates the idea of a wider movement rather than a single group of researchers pushing forward under the lead of just one high profile academic. Also even Prof Crawley must be aware that she has become toxic at least to the patient community so it...

This is definitely bad science and it would seem that Walitt, at least, went into this study wanting to find that ME fitted into his own psychosomatic/functional preconceptions (perhaps regardless of any outcomes), but do we have a ‘preponderance of evidence’ demonstrating intentional...

My knowledge of MS is very much out of date, but my understanding is that its initial presentation can be very very variable and more than one episode is required for a formal diagnosis, making it inevitable that a lot of not yet understood neurological issues will initially be considered as...

Prof Crawley had started a number of research projects looking at new psychological interventions (modified CBT) to use with children who were not cured by her clinics previous intervention, even though by her previous claims such children didn’t exist. Is it a mixture of her realising that her...

I am surprised how much people scoring so low on SF36 seem able to do. Does this reflect issues with SF36 scale? I did score myself several years ago on the SF36 scale and though I can’t remember the exact score I was in the severe ME range. However I could not imaging being able go to...

A clear and useful letter. Just a trivial point, typo in above quote, I am assuming ‘psychologist’ should read ‘psychologise’.

Given the risk of a serious adverse response to an individual vaccine event is fairly low, perhaps 217 does not represent a high cumulative risk if simply adding the potential risks of each individual event. However can we say yet if the risks of subsequent vaccine events remain the same or are...

Though in danger of proposing an unfalsifiable argument, but as well as increasing fatigue as the task goes on, participants are learning about what they can do so perhaps they become less cautious. Alternatively as time runs down participants see the finish line in sight and become less...

You will be right. I don’t mind when I can’t remember things but it is a problem when I am convinced I do remember the wrong thing.

Despite Crawley’s long standing PAG that supports her work, at least since 2016 it is getting harder to argue this, given the various patient surveys, the new NICE guidelines findings, the 60 or so patient groups signing our letter requesting the withdrawal of the Cochrane Exercise Review...

Isn’t this why you are not meant to eat polar bear liver because of the high amounts of vitamin D. Not that I have ever been tempted.

An ethical committee approving this is perhaps unsurprising, but, even though I was aware that Prof Crawley had a long-standing hand-picked PAG, it still seems disconcerting that patients or parents/guardians would support this research. However, we also see the opaque Sussex and Kent ME/CFS...

Evidence to add to our thread on why GET is bad for people with ME. Perhaps we should be asking Crawley et all to sign our petition on withdrawing the current Cochrane Exercise Review as they have provided evidence towards the harm it can do.

Such an app may even help some people, though not as intended. Every now and again I come across people with ME on social media who say things like: ‘When things start getting bad I do two weeks of GET and that sorts things out’. My interpretation of this, given talking of two weeks of GET is...

Does this rewriting of Activity Management protocol over time represent an attempt to escape the NICE rejection of GET? Certainly I can’t see that this Graded Cognitive Exercise Therapy could in real life be anything but GET. This is not even an attempt to disguise ‘pacing up’ as pacing as...

Yes, association is not sufficient to demonstrate either causation or the direction of any causation if it is the case.

What ever triggers immediate fatigue may contribute to subsequent PEM, and indeed this rapid fatiguability may be more noticeable or have more rapid onset if already in PEM, but I agree my subjective experience is the two are distinct. If not already in PEM or experiencing concurrent ’rolling’...

Yes, GET by another name: Although this focuses on cognitive activity rather than physical exercise, by introducing fixed increments does it run foul of the NICE prohibition of GET.