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The Larun review is specifically a review of clinical trials of exercise therapy for CFS. It only looks at the subjective short term outcomes of 8 trials. It purports to look at harms but only takes the narrowest view of that by reporting what the PACE triallists reported about adverse effects...

Given that there are close to zero doctors specialising in ME/CFS, that effectively makes the Cochrane reviews of ME treatments likely to be widely used and believed in clinical care. One would hope in the UK that would be superseded by the 2021 NICE guideline, but now Cochrane have played their...

I would think it would help if you are dust allergic. I found a robot vacuum cleaner helped keep the floor dust under control during the pandemic lockdowns when our cleaner didn't come.

I have been trying to find a way to express the difference I see between minorities of the sort @Jonathan Edwards listed - deaf person, cancer survivor, elderly etc. And the difference between those minority characteristics and pwME, trans people and some other groups. I think the difference...

I don't think the problem is advocacy gone wrong for ME/CFS. At least I don't think that's the major problem. think the characterisation of pwME as lying scroungers AND as inherently bad people is rooted deep in the BPS view, coloured by the false accusations about us being dangerous activists...

If it has to be done manually that's not really surprising in the middle of the holiday season when many offices close for a week or 2.

It's understandable that she supports MS because her mother had it. What is not understandable and is in my view pretty unforgivable, is her clear assumption that ME is fake, and her choice to portray 2 pwME in fiction as not only faking illness, but as horrible people. That's lazy stereotyping...

As far as I can see this research is done with healthy people, so the fatigue they are talking about is the immediate healthy fatigue after a strenuous physical or mental activity. An example they give is: So they are NOT investigating the pathological symptom pwME sometimes describe as...

It's funny reading that and just substituting a couple of words: Pot. Kettle.

I think the pilot was supposed to be the particular way of doing patient engagement with an IAG advising the review writing group, and some public consultation on the protocol. Most of it never happened, and we only find out now that Cochrane editors sat on the draft protocol for nearly 2...

It's so blatant. They list the limitations - subjective, single time point - then go on and claim cause anyway.

I have just been reading through the brief descriptions of the 6 full trustees of the MEA: https://meassociation.org.uk/mea-team/ Of the six, four are very involved in senior roles in day to day running of the MEA, Neil Riley, volunteer, in some sort of undefined management role (and he's the...

Please avoid speculation about the diagnosis of identifiable indivuals, as per Rule 2a.

I summarised last weeks events in the weekly news: https://www.s4me.info/threads/news-in-brief-december-2024.41540/#post-574260 Including Hilda's comment on her talkpage here: https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/

I'm not going to ruin my Christmas by watching it, so I'll have to leave it to others to make complaints.

Perhaps this warrants complaints to the BBC.

I wonder whether all this relatively new stuff that restricts how reviews can be withdrawn was done specifically to scupper withdrawal of the Larun review, and the bit about being replaced by a new review was to tie withdrawal to a new review being approved. Bingo, drag out a new review process...

I understand and share the wish to get rid of the CFS name, but accept it as part of the ME/CFS name for now. I don't think there's any point trying to think up yet another name to join the list of PVFS, PIFS, SEID, CFIDS, and doubtless others. We won't get agreement across the world for another...

I had a quick glance through the AfME Articles of Association at Companies House as an example for comparison, and there seemed to be no mention of any possibility of any trustees being paid for contract services. There was just the usual bit about expenses. And on the AfME website there was a...

More from this link: This has not happened with the Larun review, for example Michiel Tack's 2020 comment which detailed multiple problems with the review and which was reponded to with an editors letter saying it would be addressed as a priority in the new review - hasn't happened because the...