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He seems to suggest that patients report seizures as being 'less bothersome' but if you use CBT to tell people not to worry about seizures and basically ignore them then it makes sense that people report them as less bothersome to the people who told them that.

We know what they mean by 'functional' of course no doubt the next claim will be cured by GET/CBT

Posts moved from NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021 As far as we know they don't seem to do much in terms of follow up. They seem to do 'patient satisfaction surveys which come out well for them and perhaps some other...

As I understand it BACME who are closest to the clinics have said they will implement the guidelines. I also have a suspicion that many of the therapists don't push GET although that is based on very very little info - but I do suspect the individual therapists know it doesn't work and just try...

This is one phrase from there worth note "Many clients are, to put it at its most stark, getting money to be ill - from the state or from private insurance."

Bing pointed to patient.info first followed by the CDC and NHS What I found interesting was this box at the side which seems to be info they have collated and not very good. There claims of >1m cases per year is weird.

I wonder if Hilda has got board of the effort so nothing has happened until she gets interested again.

I do wonder if there is value in studying people with ME when they get further infections as some report a reduction in symptoms. You are making another interesting point about basically an additional post viral fatigue on top of the original one. I think there are also stories around vaccines...

I think one of the really interesting things about Phil's story is he seemed to recover after a long time of being ill which seems really unusual whereas I think many of the recovery stories are people who have been ill for a relatively short time (as in a few years). I think he knows he is one...

I think that quote really gets at one of the issues with recovery stories (not Phil's) which is people often credit what they were doing at the time with improvement and also doing more with improving when the relationship is the otherway around. Having observed someone with ME over the years...

I think lots of the questionnaire stuff is like measuring with a ruler where each of the marks are placed at random intervals but numbered consecutively (a bit like a piece of elastic I guess)

I had something different in mind than looking at individual patient progress. Basically if we have a trial population T which is made up of two groups A and B (as defined by some function s) then one group (say A) will have an average improvement effect on the outcome at a given point of i...

There isn't but I'm wondering if there is a simple analysis of the distribution of the values for the outcome variables that would be able to test their hypothesis. My feeling is if there is a real effect on a reasonable proportion of the trial population then that would show in the distribution...

When I first read PACE (without much knowledge about anything ME or about trials) my first thought was that some would probably benefit and others not. I thought this would lead to a bimodal disrtibution over improvements (i.e. one part of the population improving and one not) such that it would...

Its interesting that so many claim to have an interest in the 'lived experience' and yet seem to use this as a reason not to listen to what patients are saying but would rather listen to psycologists (or whatever Chadler is) and what they say about 'lived experience' even when they have no evidence.

I wish people would challenge them when they make such claims to ask them what evidence they have to back this up. Given what we know of how the clinics work (with lack of follow up) along with trial results it seems to be a very empty claim.

A good quote from Sharpe as it suggests that he isn't doesn't have a clule about the potential for reporting bias.

Another misleading comment these are sold by Sharpe and White as curative not to manage symptoms.

It starts badly by suggesting that NICE have withdrawn the guidelines which is not true they are paused. So the whole headline for the article is misleading. Also the subheadline picks up on psycological treatments and issues which is again misleading.

His comment "One reason, perhaps, that so many NHS staff have #LongCovid is that there are so many staff shortages, that they are either forced or feel duty-bound to push on through and get back to work. They are now sadly discovering for themselves how horrible postexertional malaise can be."...