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I remember coming across this Memorial list https://www.ncf-net.org/memorial.htm Obviously, I can't vouch for its accuracy, and the caveats discussed above apply; that is, this is a 'died with' list, though I have no doubt some on the list died due to ME.

Exactly this. Just an extention of what has been going on in our community for decades now.

It seems like the covid version of Myhill's mitochondrial test score: take lots of different measurements, then combine them into some sort of score to get a totally meaningless number that apparently indicates the level of severity.

There's a thread on Patterson here: https://s4me.info/threads/usa-incelldx-dr-patterson-new-lab-service-offering-cytokine-tests-to-covid-longhaulers.20434/ Wouldn't trust him an inch.

Just bumping this. The PSP is keen to get applications for the final workshops from carers and healthcare professionals (in addition to ME patients). You can apply for take part in the workshops until Tuesday 11th January, here: https://www.psp-me.co.uk/take-part/

If anyone has a PDF of this paper, could you please send it to me! Thanks. EDIT: Obtained.

You could contact the ME Association to see if they have heard of any other alternative.

I'm not certain, but I suspect not. I think everything goes through GP clinics, except pop-up and walk-in centres.

I am thoroughly confused about the booster roll-out. I was put in Group 6 back at the start of the year and had my second dose in early May. I only got a text about booking my booster last Friday—7 months after my second dose. Have they got rid of the groups now and are just rolling out the...

Chalder coming up with the idea for this paper:

I'm tempted to think less incentive to hand out anti-depressants is a good thing, but if the alternative is six months on a waiting list for CBT...perhaps not!

This was the survey Dr Phil Hammond shared on Twitter saying it was a pre-guideline survey showing that GET was not really widely used in clinics, until I told him it was actually a post-guideline survey, and that the pre-guideline survey (BACME's previous survey of clinics, from 2018) evidenced...

The expected guideline publication date at the time of submission was 21 April 2021 (announced June 2020). Yes, it can take months and months—and occasionally years—to publish (I've been there myself), but, for a 3-page perspective paper, submitting 8 months prior to the expected guideline...

Oh. I actually missed the 2020 in the first date! A paper does not usually sit with a journal for a year, but the fact that they give the original submission date means that it probably wasn't totally pulled as the authors tried to keep up with developments at NICE. I suspect it may have been an...

Yeah, this was more a 'response' to the draft guideline than the final—probably prepared over summer.

They're trying to stake a claim to rehabilitation, and set the patients as being anti-rehab (because the BPS lot think that patients think anyone who gets better was never ill with ME/CFS, which is generally not the case): GET and CBT are rehabilitative, whereas pacing is not.

This is a essentially a response to the NICE guideline, and the associated debate over key issues, that somehow manages not to mention the NICE guideline once!

These papers are helpful, but do we need a new one every six months?

A 10cm increase over just 100 years seems quite remarkable.

Scotland has it's own version of NICE (SIGN), so I don't think we should automatically expect this website to change due to the new guideline.