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Finally emailed my MP i.e. to try to raise the change in the methodology (outcome indicators - objective to subjective) in the PACE protocol. If there's revised NICE guidance, which (at least in part) undoes the mistake, then this may be an opportune time to remind Government of the need to...

I agree i.e. about +ve scoring (by patients) when subjective outcomes measures (questionnaires) are used: It's about being interested in making their (people with ME) lives better - that's why people score the intervention positively - the person (health care professional) is showing an interest...

There was an interview with Tim Spector on Radio 4 recently - The Spark https://www.bbc.co.uk/programmes/m000rlpz There were a few awkward pauses, re his new company venture, which I felt indicated he'd decided to monetise his ideas --- get some cash in the bank --- gone over to the dark side.

There's an excellent review by @Jonathan Edwards of the current position re ME/CFS research here: https://www.s4me.info/threads/the-true-nature-of-an-autoimmune-disease-leisk-and-nocon-2021.19583/page-3#post-332763 In a way it illustrates the difficulty in developing any GRADE type assessment...

On the plus side (joke): "Improving Access to Psychological Therapies (IAPT) programme. Clark (2018) reported that 50% of people receiving IAPT recover and two-thirds show significant improvement." OK that (presumably - can't access the cited study*) is what the patients reported in the...

Yea it's sad at some level that we have to rely to translators like @Jonathan Edwards - grateful for the insight though.

I don't follow this crap carefully so I may be off message here. This bit jumped out at me "may lead users away from ‘real life’ social support, therapeutic engagement and effective, evidence-based interventions". Basically I read this as we've cornered the market in Shamanism come over to us...

Excuse my unkindness, but if they've got to the point that we just have to be concerned about the proof reading, then that's a quantum level leap for them. Didn't read the letter - perhaps I will. See SOLVE is working with them - I've a lot of respect for SOLVE, so maybe things are better.

EDIT - just realised you mean biomedical research so had to redraft ("charlatans" removed etc!)! Obviously there's a question of the validity of the outcome measure. You really shouldn't use subject indicators, i.e. questionnaires, you should use objective outcomes i.e. activity monitors. You...

Yea reminds me of an "issue" re fish length/weight --- the data causing "concern" didn't show the seasonal effect --- if your going to cheat then you actually need to have a good understanding of what you should find!

I've had a memorable burger --- bacon --- cheese --- in Queenstown South Island. Can't see why you guys would eat McDonalds --- OK it's cheap. You've also got green mussels -- probably the best mussels in the world Ever get back there I've a list of eats --- elephant fish with chips ---

Happened to glance at the packet of chicken thighs - tonight's dinner - £3.60/2KG or 90 pence for 2 portions (500 grams). OK I go overboard by filleting them and cooking the meat/skin/bone separately in an air fryer. But yes it is cheap. Pre-covid, before I adopted drive through click and...

I can stick with Michael Mosely's advice i.e. increase the overnight fast. Also, his advice was eat what you want; although I modify that to tilt towards stuff with less sugar in it - e.g. porridge is amazing since it keeps you feeling full for much longer. I'm not great on the eat less thing...

"The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness, although early on when I was still feverish I needed to rest." Imagine you're a bored soul doing a review of the correspondence re the draft NICE guidance and this gem...

So basically I can "expect things to happen then they do" --- who wants to be a millionaire, time travel --- are there any limits --- not really helpful is it --- in fact it's the reverse!

I've been a fat teenager --- too thin --- fat --- I came across Michael Mosley's recommendation, i.e. extending your overnight fast, and Tim Spector's advice on increasing fibre & avoiding super processed foods. So porridge in the morning and try to have my evening meal a bit earlier - due to...

Apologise @Trish - it was a good idea to include it. E.g. it reminded me that I'm not sure how the NIH research award to Ron Davis/Mark Davis worked out/is progressing. Also, it's interesting how it might indicate that the issue is more subtle/complicated than getting an infection - Prusty's...

The text on the News page includes this: "In terms of the results concerning the example of application, there is no evidence for a different level of exposure of the patients with ME/CFS to these herpesviruses when compared to healthy controls and patients with multiple sclerosis." Really just...

Thank you for your answer. I can see why you'd like to be in a position to collect more samples than you'll eventually test i.e. to reduce potential volunteer bias. Are you concerned that, since we don't have a biomarker filter for ME, then that may make an ME GWAS study more challenging?

Yea it would be interesting to do a blind trial of Doctors - same bunch of patients and different Doctors. The EDS Doctors would find EDS in more cases and the ME Doctors would find ME in more patients. What patients really need is a push to understand the disease not a label that doesn't help...