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Just shows how completely useless AI is in this context.

So judgemental and purely based on biased assumption, not reality. Maybe future research should explore how inadequate medical and personal care provision and social rejection and isolation drive sick people to social media to seek support. I really dislike this sort of research. It's lazy...

He moved to Canada.

One of the articles says the MEA is presenting the exhibition, so it may be that they did the organising and paid to hire the exhibition space and ran an opening event. There's no mention of an entry charge.

While I agree the article contains a lot of misinformation, and in theory the media should present it alongside accurate information, I'm not sure how editors are supposed to sort the facts from the fiction when even the medical colleges, SMC and influential doctors promote misinformation.

I just feel huge sympathy for Millie and her family after reading this article. We are all so badly served by the NHS for ME/CFS and related conditions that it's natural for parents to search for answers and in desperation try everything, and to want to believe ancedotes by others and what...

That's a really good article. I hope lots of doctors read it and take notice.

I understand step count is useless for those only able to walk a few steps a day. But it shouldn't be dismissed for everyone. I found reducing my steps from over 2000 per day to around 1000 a few years ago cut the frequency of PEM very significantly, improving my quality of life. And...

My point is that of course for ME/CFS the purpose is completely different. It's about limiting exertion, so the level at which we are 'overdoing it' would be much lower than for elite athletes. It's more the fact that heart rate is a useful guide to amount of exertion that I think is relevant...

Heart rate monitoring has been recommended as a guide to when to stop exercising and take a rest for ME/CFS for decades. Even the 2007 NICE guidelines and the PACE trial used it specifically for GET as a way of indicating exertion level during their daily exercise session (usually walking). They...

So do I when they are designed to provide masses of useless information and micromanage people's people's lives with rehab programs for them to work through as a replacement for physician led medical care. But I actually would welcome a simple app where I could daily record symptoms of...

I did a quick run through of parts of their resource. It's all about finding the story that makes sense to you. I filled in the bit where it asks about symptoms. It concluded the usual stress, sensitisation stuff, even though I only filled in physical symptoms not mental health problems. The...

I'm interested to know what they think of the reverse problem where trials use PROMs and objective measures, but only report the PROM results because the objective results inconveniently don't support the researchers' prejudices. That's what we are plagued with from Busse's BPS friends.

I don't think the DSQ is a valid measure of PEM for all sorts of reasons. The descriptors are more about immediate symptoms not PEM, and focus too much on fatigue, and the frequency depends too much on illness severity, personal circumstances and pacing. Comparing it with the Chalder Scale and...

It occurs to me that a parallel might be made red hair being associated with increased risk of some symptoms, such as increased pain sensitivity, and conditions such as skin cancer, endometriosis and Parkinsons' disease. None of these is called red hair disease. They are named according to...

Commissioning an NHS service for very severe ME Perspectives from carers and clinicians Article with results of their survey. More details at link.

I would be put off donating by such a gushy letter and invitation to chat, but I may not be typical. I'm much more likely to donate if there is clear concise information on past, current and future projects and how funds are allocated.

I would say that's the start of the discussion for any good scientist whose data shows associations, They would ask questions of whether it shows causation, and if so in which direction, examining things like reliaibilty and validity of the data, confounding factors, sample size...

No, it is an accurate reflection of the way so many people drawing conclusions published in papers we read misuse correlations. All scatter plots and correlation coefficients can show is whether there is an association between two sets of data. Interpretation has to be based on understanding of...

I am assuming the exercises were prescribed for something other than ME/CFS. If a physio is prescribing exercises for ME/CFS they should be struck off, and even if it's not for ME/CFS they should know they need to take it exceedingly slowly or find other ways to help you. When I was prescribed...