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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.

If my memory services me correctly there was a study looking at outcomes for the British ME/CFS clinics at a time when GET/CBT was their standard treatment, and they found that following intervention from these services patients were likely to work fewer hours and claim more benefits. This is a...

There are situations where unblinded trials with subjective outcomes are the only option, either because of what is being investigated or because the complexity of the real life clinical situation makes meaningful controls impossible. However this does not in anyway reduce the potential for...

Even compared to these disappointing time scales the replacement ME/CFS Exercise Review is a disaster, 4 to 5 years in, depending on where you set the start point, yet still no published protocol. We are already well beyond the 39 month upper median total publication time and still no protocol...

As I see it the issue is not that people with ME do or do not have issues with day one exertion, one would expect this is many conditions, rather what seems so far to be unique about ME is that previous exertion dramatically impacts on attempting day two exertion, so it would make sense to know...

Like @Creekside I am currently in favour of preprints but open to be being convinced of the opposite if there seem to be good arguments against. For me what sways me currently in favour of automatic use of preprints is the problems with peer review where reviewers seem to very often miss quite...

I have been pondering this phrase as it suggests @sarahtyson is at least in part in a world where people with ME have ‘such a bad reputation’. That world includes the PACE associated academics whose calumnies of people with ME they were unable to sustain in a court of law or Professor Crawley...

Given the paucity of studies into PEM what can we say about the duration of PEM? Given there are many anecdotes of the impact of PEM lasting weeks, months, years or even indefinitely, I suspect it is premature to consider its effects as relatively short term. Further I suspect we need more...