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I'm puzzled by their use of the terms PESE and PEM to mean possibly different things.

Continuing my notes on the app: The home page has a series of sections to select, I've crossed out the ones convered in my previous post: My tasks, add task. Help at Work Symptom specific resources Financial resources Advice for managers or employers Videos Advice for friends, family or...

Surely that's what this whole forum is about. We take research papers one by one and look at the findings as reported, and factors that might make those findings signs of genuinely useful difference in biology for ME/CFS and which may be artefacts from, for example, too small samples, poor...

Posts about Remission Biome experiments with antibiotics have been moved.

I'm attempting to explore the app in more detail and will make some notes here. Since the app is on my phone and I'm typing this on my laptop I can't copy slabs of text, so this will be sketchy. Wish me luck. I hate feeling I have to do this, but someone's got to tell them about the problems...

Ugh. Of course it's nice for the individual who has recovered, but all the stuff about the power of human spirit to overcome adversity, and determination is so insulting to people who don't have the good fortune to recover. I reckon it takes much more determination and heart to go on coping...

I think in the case of the Walitt paper, it's not psychology or psychiatry that you need to understand, it's the fact that there are people, including Walitt, who may be physicians, psychiatrists or psychologists who believe that pwME don't have either a physical or a mental illness. They...

I agree. It seemed so obvious that there was a predetermined conclusion from the fact that they chose to build the entire conclusion of the abstract around their invented term 'effort preference' despite it being a misinterpretation of the outcome of a very minor aspect of their research that...

I doubt the NHS 10 year plan will say anything about particular diseases. I imagine it will be more about allocation of funding for hospitals, and broad categories like more or less GP walk in centres, testing labs, mental health services, use of apps and AI etc.

The whole British honours system is ridiculous. I listened to an enlightening podcast a few days ago where two very experienced insiders in the PR world discussed the process people go through where they pay PR companies to promote them for honours. It's corrupt and silly...

Sounds like the same stuff BACME produces.

Pretty pathetic that the 2 publications Fink cites to support his views about ME/CFS are the recent Garner et al nonsense and the Cochrane review.

The abstract is just an expression of an opinion, with no clue as to what evidence they base this opinion on. It received 3 positive comments on the day of publication, presumably from their friends.

Ah, OK, I misunderstood the first sentence as a separate statement. Reading again, it's clear it refers to the second sentence.

Excellent work. Really well argued and clearly written. I think it's sufficient clear evidence for Wallitt et al to be asked to retract their original paper. Is there any move in that direction? Has Walitt been contacted for a response? I wonder if this is an error - should it be 'no...

The importance of understanding rest How my experience of rest as an athlete clashed with my experience of rest as a patient OONAGH COUSINS A really good article, some quotes:

Maybe an insulated cool box next to the bed packed each morning by a carer with ice packs, frozen drinks, cooling mats etc that could be taken out as needed through the day. I find wetting my skin and blowing a small, almost silent personal fan across it can help with cooling down.

I have just finished reading the whole booklet. It's unclear who it is intended for, as it is a mishmash of basic information about ME/CFS, including copying chunks of the NICE guideline, a summary of different theories about ME/CFS, and a long list of bits and pieces of research, with some...

I haven't read the article, but if that's all they can come up with as recovery evidence 6 years on from Jen and Jeff doing their big social media push and setting up private facebook groups to promote the surgery, and Jeff running his business promoting it, then all this article is is...

I think it's worth adding for the record their 'competing interests', copied from the article. Competing interests: Elizabeth Carlson runs a personal blog focused on ME/CFS and Long Covid recovery with a paid programs guide and one affiliate link. Her portion of the proceeds is donated to...