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There's been a lot of great work there @RoseE.

These arguments might make sense if we could have a lot of faith in the diagnoses of CFS or ME/CFS made by doctors. But, we can't. The key thing in trying to ensure as homogenous sample as possible is the screening survey that is part of DecodeME. Therefore, I don't think that people with a...

Just keeping track of who is doing these prejudiced studies - Harvard Medical School in this instance, with one person from Oslo University Hospital.

I know we've discussed it before, but is there any way the study can be tweaked to accept people who have been diagnosed with Long covid and pass the ME/CFS screening questions? I'm sure that the 5000 Post-Covid ME/CFS target could be achieved in a short time if that was done. We all know that...

Terrific to have the support of Action for M.E. (AfME) in the United Kingdom for the open letter and promoting the petition. Thank you.

How interesting. I had a flare a couple of years ago now (I think, the years blur...) and I ended up with lumps. First one near my elbow, then I got them in quite a lot of other places, knees, ankles, more around the forearm, one at the base of a finger. The joint would get hot and sore and...

Charles Shepherd :thumbup:

The problem is, the words on their own mean something. Who wouldn't want medical practice to be 'based on evidence'? I guess it's the quality of the evidence that's the issue. It's a bit like bio-psycho-social. Who wouldn't want medicine to think about the social context and the emotional...

It's interesting to read that @Sly Saint. I mean, of course there are things that could be improved, the focus on fatigue, the 'CFS/ME', the suggestion that the diagnosis is based on having otherwise unexplained fatigue, the complete lack of a mention of PEM. It really is remarkable that a...

:laugh:

Heaven help us. The Association for Neuro Linguistic Programming (NLP) featured Bruce Arroll instructing on designing RCTs in 2015. https://anlp.org/rapport/read/lite/rapport-48-winter-2015 I assume it's the same Bruce Arroll. Because here in 2016 he was presenting at the NZ GP's conference...

I note that Professor Paula Lorgelly is a faculty member of the School of Population Health at the University of Auckland. She was instrumental in setting up Long covid Registry. She seems to have sensible ideas about post-viral conditions. Maybe the School of Population health is the...

So, the School of Population Health at the University of Auckland might be the target of a letter.

:D I reckon it could be worth writing to them - there is a contact form. There's a bit to say - NICE guidelines: rating the outcomes of the PACE trial as being low to very low quality evidence; explicitly warning against the Lightning Process and GET; the fact that the PACE trial was not a...

Utterly horrendous RNZCGP case study on 'CFS/ME': RNZCGP GoodFellow Unit MedCases CPD Sept 2023: Chronic fatigue syndrome/myalgic encephalomyelitis

It's mostly an ad for the Lightning Process.

Oh SNT, that is so dispiriting. Horrendous misinformation. Is there anything we can do?

Thanks to ANZMES of New Zealand for signing the letter and promoting the petition.

Thanks for being here @Manuel. As an example of my earlier comment about needing to take a good look at the evidence on which the theory is built: There's not good evidence that hypocortisolism (as in cortisol levels below normal ranges) is a widespread problem in ME/CFS and Long covid. There...