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I think here there may be a sudden vs gradual onset here. Clearly where onset is severe that probably isn't subject to recall bias issues. But I think there are a proportion of PwME (unknown size) who start off really mild and then something happens and the deteriate or deteriate gradually and...

Thanks Michiel I think they were the ones I was thinking of.

I wonder how accurate retrospective studies of onset would be? If someone is looking back it is easy to remember a small bug (particularly in the winter). Or in some cases I think people are (very) mildly effected and then something triggers a severe worsening and hence getting a diagnosis. In...

I wonder if someone wanted to update it before the new version comes out as what they do will stay up for a while

If they know the guidance is being updated soon then they shouldn't be wasting time and money updating stuff to guidelines that are about to go out of date.

If someone want ed to validate how LC was being coded and diagnosed they would need to take a random sample of patients who think they have it - confirm the diagnosis and then see how they got on with the medical system or even if they tried. I suspect quite a few will be dismissed by GPs and...

That really makes Cochrane a joke as an organization how can they give any sort of positive rating to anything measured by an incoherent set of questions whose scores can be added up in two ways so that a patient can both improve and worsen at the same time.

I don't think it matters what the diagnostic criteria were really since the trial gains were likely to be due to reporting bias. I think that is an interesting point. If they are refering to PACE in terms of patients having PEM then a close look at the criteria and how they were...

I'm wondering about the indirectness thing having quickly looked at what they are saying in the guidance https://gdt.gradepro.org/app/handbook/handbook.html#h.w6r7mtvq3mjz They talk about indirectness of the population. I assume the trials were marked down since the had poor selection criteria...

I think any trial using the CFQ as an outcome should be rated as very low quality. It suggests a lack of competance in those running the trial as it is so bad.

If I remember correctly PACE used the london criteria (although perhaps a strangely modified version) which has PEM as a requirement. There results showed no or little difference between those just meeting that criteria or the Oxford one. If they do represent two different sets of patents this...

Cochrane could have explored very different ways to approach a review more as an 'open source' type project than a small group of 'experts' telling people what they think approach. There is room for real innovation for any organization who really wants to transform the way patients are included...

Lets face it the Cochrane statement in the first place is very poor in terms of patient participation. Keeping patients informed is not patient participation its just telling people stuff is happening. Patient participation is about involving patients in the actual review processes including...

This basically means an improvement on three questions in the SF36 questionnaire. But a problem I have with this as a measure is if you look at the questions then there are quite a few in the middle that are likely to improve concurrently so for example if your ability to walk a short distance...

Short term research contracts is how much of academia runs in the UK.

I think its interestin that she was working at Griffith University in australia until 2016 where I think they have biomedical ME research (although it tends to be over hyped) so perhaps she will come at ME with a more realistic approach than researchers from the UK.

I suspect if you promote a potential treatment to patients where there are none you will get a relatively positive result from many. Hence I was wondering if you really want to know if patients find a potential therapy acceptable how you describe it is critical but also you could do a...

It would be interesting to see the request they put in for ethics approval considering that PwME can relapse with exercise - I wonder if they warned their subects (but of course that would effect results). I don't see how they could argue any possible value comes from this type of research -...

No idea but they have £1.36m to do it. https://www.ucl.ac.uk/news/2021/feb/ucl-researchers-lead-ps11m-projects-investigate-long-covid

Look at the co-investigators they include Crawley and Chadler so the research is likely to be very poor. [Added] In addition they are using the CFQ which also implies very poor quality as it is such a poor quality confused questionnare and inconsistant between two different marking schemes.