Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Also interesting to see Peter White put his head above the parapet for what seems the first time in a while. Presumably he has not read the draft NICE guideline assessment!

 

Disgraceful. Why does the Guardian seem to go out of its way to give airing to these views?

 

As usual, the absence of evidence argument. If you design trials to not recognise certain kinds of evidence, then funnily enough you are not going to find it.

 

The other interesting thing is that both the BACME info and a well known psychologist are falling over themselves to say - oh but of course we haven't been doing it like that for years anyway. We now have personalised treatment. The stuff in the PACE trial is no longer relevant so the fact that the evidence is low quality does not matter - we know what works.

A letter from Don Quixote, Sancho Panza and Rocinante it seems. (Take your pick.)

 

Please don't jinx it! We haven't seen the final version of the NICE guideline yet... we can't be sure he doesn't know something we don't.

 

I hope someone who knows these trials inside out can put together a response (perhaps in a Letter to the Guardian).

 

I have replied as well https://twitter.com/user/status/1370101264827158533

 

We're trying to work out how to do just that

 

That would depend on whether or not people claim the letter says things it does not. I think that it would be best to avoid doing that, which seems unlikely to do anything other than strengthen the position of people like White.

 

merged thread

https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy

 

We usually have people on hard. @Robert 1973 is always very good with letters. I'd do it myself but I don't know the trials inside out. The elephant in the room is that the patient experience / surveys are completely disparate with the trial findings as far as efficacy and 'harm'.

 

It's an opinion letter. This is all they can do, assert their opinion. To me that signals a weakness in their political position right now. Hopefully.

It really is telling that the only format they were allowed to be published is an opinion letter. Because that's all this is: their personal opinion, a set of beliefs with no supporting evidence that can only be made using weasel words.

So at least there's that. It's pathetic that this has any credibility whatsoever.

 

I think in one of your intro posts, here in S4ME, you mentioned that one of the reasons you became convinced you needed to set your group up, was due to your own experiences with ME/CFS patients. I seem to recall you had found yourselves always able to help your patients, until you encountered people with ME/CFS, and that your experiences and perceptions then needed a reset, because pwME/CFS simply did not respond to exercise the way your training and experience said they should. I would have thought an inclusion of something like that might be very influential.

If you were able to cite an anonymized example or two all the better. But if not then more generalised, but nonetheless tangible, commentary from your real experiences.

 

The key here is the argument that the *trials* don't show evidence of harms. I think we all know many reasons why they might not, but this needs to be communicated properly by someone who knows about this stuff.

 

He doesn't.

 

That seems very insightful (hopefully they're not reading this) can they sneak in i.e. under the revised guidance (and continue to make money out of the problem)?

 

The Guardian really should have told them their "opinion letter" was actually more of a tweet, and referred them appropriately.

 

i will hazard a guess that a lot of the guardians finances are from insurance industry adverts . can not possibly do an article showing how false these so called experts are but then media has always been a machine used for propaganda .

 

@PhysiosforME further to my previous post.

I'm guessing that in your experiences of treating patients, you will have encountered a pretty representative cross section of patients treated by physiotherapists in the UK. I'm also guessing (sorry for all the guessing!) that amongst all those patients you are able to help, there may be a percentage of those who are fearful of following the treatments you recommend, and that you need to help them overcome that. If I am right on this, and only if obviously, then you could point out that you have plenty of experience of patients sometimes having fearful beliefs about their treatment that can in fact benefit them, and that you would therefore have been ideally placed to recognise if that were the case with your ME/CFS patients, but in fact became very aware that was not the case at all, that in fact something very different and physiological was going on.