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Yes, of course there's a difference between factually and ethically wrong. I was talking about the former, as in, 'does it say what the guideline says?'. The RCPCH guidance copies items 1.11.10 to 1.11.13 including The RCPCH guidance also says: So, they are clear that only people who...

(From that GRADE Guidance - note the 'McMaster GRADE centre' providing financial support. Does that mean GRADE has a relationship with McMaster University? I don't think I knew that. Also does not bode well.)

GRADE Guidance 24. Optimizing the integration of randomized and non-randomized studies of interventions in evidence syntheses and health guidelinesCuello-Garcia, Carlos A, Santesso, Nancy, Morgan, Rebecca L, Verbeek, Jos, Thayer, Kris, Ansari, Mohammed T, Meerpohl, Joerg, Schwingschackl, Lukas...

I'm with Sarah on this. The RCPCH commentary doesn't say much, but I don't think what they do say is wrong. The guidelines do suggest physical activity may help increase physical ability. The guideline does not stop exercise therapy being offered or even being advised so long as it isn't...

Ah yes, you are right.

Prof Garner: 1. You seem to have both the name of the disease and the guideline muddled up - it's ME/CFS. 2. 'from a recovered patient'. But didn't you develop your fatiguing condition after Covid-19? The NICE guideline for Managing the Long Term Effects of Covid-19, firmly in the hands of...

Yeah, I had been thinking, if you are compelled to go through this programme in order to get your income protection insurance payout, perhaps it's not so bad. At least they seem to be understanding PEM and not having people push to the point of causing it. But I hadn't seen all of those bits...

Australia and New Zealand clinics: Specialised Health We have a thread for this rehabilitation clinic franchise operating across Australia and New Zealand. They provide services to insurers, so people with ME/CFS trying to claim on an income protection policy may come across them. It would be...

Actually, I think their website content is very much in line with the NICE ME/CFS Guideline, as they claim. There is a relentless positivity, but just possibly a person newly diagnosed with ME/CFS and wanting support could do worse than to do their program (delivered online) at the beginning...

Choose your own adventure? There's a map of Australia and New Zealand - they have physiologists in most of the major cities. Bounce!

Such a short period of time makes it unreliable. It's a lot like the 6 minute walk test - it's very subject to voluntary effort. The act of measuring is likely to influence activity levels over that period. People who want to believe they are cured and want to please their therapist will often...

That is utterly outrageous. I wonder how they will go with recruitment if they are upfront about the disease model they are addressing with the CBT.

Yes, they could be (although I don't think the paper talked about that). There was quite a high use of anti-depressants among women who did not qualify for a depression diagnosis according to the screening questionnaire. So, maybe the anti-depressants are being used to control pain. And/or...

It's not even the lack of professionalism in the way he flings accusations around that makes me shake my head in disbelief. It's that someone who holds a professional role titled 'Co-ordinator, Centre for Evidence Synthesis for Global Health' can look at the evidence and come to the conclusion...

To save others googling - [11C]PBR28 is a TSPO radiotracer TSPO is translocator protein, a marker of activated glial cells expressed on mitochondrial membranes TSPO is a commonly used marker used to investigate neuroinflammation Elevated levels have been associated with migraine, and with poor...

Thanks for making that list @lunarainbows. It looks like a good one to me, providing minimal opportunity for harmful BPS research, the potential for some easy wins (e.g. seeing if the POTS drugs really help; better accommodations of PwME's needs in health care settings) and perhaps identifying...

Yeah, I think CRG's right. I was thinking 'here, we go' when I read the title, but actually, the conclusions I drew were, 'be careful about the use of anti-depressants in fibromyalgia, as they may have unhelpful effects, and maybe depressive symptoms related to this chronic illness can be...

Thank you @Brian Hughes :)

I've realised I haven't reported my experience yet - it wasn't remarkable, but I guess it's good to record those too. I had two Pfizers, I think the first one was slightly worse, with a sore arm for a week and glands up in my armpits and neck, and feeling more tired than usual. The second one...

Posts about the discussion in New Zealand about the impact of Covid-19 vaccinations on people with ME/CFS have been consolidated here: New Zealand - Covid-19 vaccinations for people with ME/CFS