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Thanks for trying it out, Braganca. It's interesting to see what it picked out from the mass of published information. However it seems to me to be much less useful than a research review article written by a team of experts which has been filtered by knowledgeable brains and is fully...

I'll try to come back to this when I have a more functioning brain.

I suppose so, but it just has a yes/no/not sure answer, rather than creating fantasy numerical scores that can be misinterpreted and give false answers.

My preference is not to use questionnaires. I think it's more honest, and likely to get a more accurate response if the person is given a clear definition of PEM, including commonly experienced delay, duration, sýmptom increase, loss of function, and simply asked, is this something you...

I think Hilda is just pointing out the policy seems to be ambiguous.

If you're well enough to have blood tests, it might be worth being checked for nutritional deficiencies. I take a daily general multivitamin and mineral as a precaution against deficiencies. No idea if it does any good.

I can't help wondering whether people like Live Landmark actually believe this bullshit, or are really just doing it to make money. Surely they know by now that lots of their clients get sicker.

I have tried to clarify this with Hilda Bastian on her talkpage: She replied:

Yes, thats correct, but he had left by the time the redraft was approved by KSW in 2019. I was responding to rvallee's post that said Tovey approved the 2019 update. He didn’t.

It was Karla Soares Weisser who approved the 2019 Larun review update, not Tovey.

I wonder whether palliative care physicians might be willing to get involved. I think you said one of the NICE guideline committee is in that field.

Quoting from this guide to adding editorial notes: ____________________ Decisions and communication Before requesting publication of an Editorial note, take the following steps: consult the Editorial notes policy above; determine the type of Editorial note required; and contact Cochrane...

I agree with what you say, @Yann04. It's very important that cause and effect are not confused. However, there is another problem that papers like this never seem to mention. The questionnaires are designed on the assumption that answers relate to the person's personality or character, not to...

Those sort of clinical trials that are high risk and high reward are for new drugs being tested on healthy people before being tested on sick people. The majority of clinical trials are the later stage ones where the drug has already been tested and found safe for human use, and is now being...

Oh how delightful, so we are neurotic, disagreeable, introverts now. Oh, but hang on, we're only more disagreeable than healthy controls, we're more agreeable than somatic controls. So that's all right then. This sort of 'research' disgusts me.

Commenting on this post from another thread, I have not seen any evidence from any properly conducted controlled clinical trial for Abilify being better than a placebo effect. I agree we have seen some anecdotes on social media, including on this forum, from people who describe significant...

Moderator note: If you wish to comment on or discuss the use of Low Dose Abilify/Aripiprazole as a treatment for ME/CFS, please go to this thread: Aripiprazole - Abilify

Just to add a wider issue that this and other events have raised. The MEA need to, with urgency, change their policy, personnel and practices for dealing with compliants, both internal and external. All we've been told, as far as I know, is in Neil Riley's flippant and disrespectful article in...

I have not attempted to keep up with this investigation into the MEA's actions. However, it is clear to me that it is now past the stage where assurances from the MEA trustees that they did nothing wrong are sufficient. They need to show, with a clearly published document trail including dates...

Thanks for raising that issue of being out of date, @SlySaint. I agree it's an issue to be covered in tackling what to do next, including possibliities of lodging a complaint to Cochrane, and or a Comment to Cochrane and possible complaints to funders and the Charity Commission. It could also be...