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But if S4ME is going to advise families to stick to saying 'my child can't do XYZ because it makes them ill', rather than 'my child can't do XYZ because it makes them ill due to [unproven theory]' because the second form of words will expose them to safeguarding procedures and allegations of...

It just seems we are in bizarro-world when the MRC co-hosts a showcase intended in part to "Highlight the bespoke support available from NIHR and MRC for researchers in preparing applications", including representation from an organisation which can't apply to the MRC to get funding for its...

re MRC saying they are ready and waiting to fund what they consider to be good research proposals: Does that mean SequenceME has been turned down for funding by MRC, or never applied?

I've just happened to look at the ME Association's article 'LONG COVID AND ME/CFS: Are they the same condition?' https://meassociation.org.uk/wp-content/uploads/2025/10/COVID-19-LONG-COVID-MECFS-ARE-THEY-SAME-CONDITION-V1-1.pdf it's full of stuff about mitochondrial dysfunction, dysregulation...

Oh I get it. Thanks. Still think the range of 2-225 for the aerobics sessions (in 180-odd days) is a bit startling.

"median of 68 resistance (range 1-68 sessions)" can't be right, can it? Anyhow, it's clear from that sentence that adherence was extremely variable - some participants doing almost no exercise and others doing more than 1 session per day for 6 months - and yet the results are phrased as if the...

Going by the experience of a friend who has had a delayed diagnosis of haemochromatosis - as a woman of childbearing age, you get fobbed off with "of course you're tired, everyone's tired these days [eyeroll]", "have you tried yoga" and "do you want antidepressants?"

So none of the healthy controls has signs of a really common human herpes virus, but nearly half of them have a bat virus? Were they recruited from a superhero lair under Gotham City?

Noteworthy that on their radar chart of symptoms the 'slight', 'moderate' and 'severe functional limitations' groups all make more or less the same shape, while the 'negligible' one has a very different shape (fatigue plus lung/cardio problems but not much else). It would be interesting to see...

Their speaker on 14 October 2025 was Lyndsey Woodman, a 'Health Qigong instructor, Breathwork instructor, Clinical Hypnotherapist, Master NLP practitioner and coach, as well as an EFT [Emotional Freedom Technique] and BWRT [BrainWorking Recursive Therapy] practitioner'. It's such a mystery why...

Is this one of those where scores out of 10 on a questionnaire are assumed to have a linear, mathematical reality across individuals and groups? So e.g. if a control says their fatigue went from 1 to 3 and a pwME says theirs went from 5 to 7, that's interpreted as showing "no difference" because...

Meanwhile the first letter makes several points which haven't dated at all: The only part that is out of date is his suggested definition of "Functional disorder: an illness for which the clinician has not found an explanation using his/her own frame of reference", since for some clinicians...

I really hope she doesn't end up in a long-lasting crash from trying to "challenge" herself to complete something that's beyond her current limits.

What they're actually asking is can you do these things "safely and without difficulty", or "reliably, repeatedly, safely and in a reasonable time" (the exact wording varies between forms) - those criteria apply for every question. If the process was designed more fairly, the form would repeat...

Plus the new crop (numbers unknown) of people who meet the criteria for an ME/CFS diagnosis but have 'Long Covid' or 'FND' on their records instead.

So bad it would be funny, if it wasn't serious.

About a year ago according to https://www.benefitsandwork.co.uk/news/beware-latest-pip-review-form The new one is much more restricted in the kinds of questions that are asked and what answers you can give, with less scope to accurately describe the impact of a disability like MECFS. So the...

Nice to see a question relating to a specific aim and a specific timescale, rather than the usual 'what plans does the government have to help...?' which get the vague reply of 'we are committed to helping,' from which nobody learns anything.

It will be interesting to see how many people will turn out to have always disagreed strongly with him, once he's no longer in a position to hear them saying so.