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However, the main points to bear in mind are: - is someone checking how ill and what these individuals were doing before they were cured. There will always be some for certain conditions who are just grifters who played the long game. Then there is the 'had something': All the stories in...

Indeed I think the added explanations include: - there is a massive added disability/ people sticking their foot out to trip out disabled people situation for ME/CFS (and being told it's 'helping' by those who incite it or themselves). Deciding to lean into the bigotry, ironically for any...

I note that the GP stuff gets targeted in the UK, particularly more so in recent decades, because they are independent from NHS (but not from the colleges) and gatekeep (both patients and funding to hospital depts and tests) and if influenced can then influence funds to almost everything...

To me it struck me as a groundhog day repeat of the utter push to 'not investigate' that was secretly happenning with those who got dumped into CFS a decade ago. Anything that is suggesting people should be misdiagnosed - which this advice would seem to be doing to me by saying that testing for...

I thought I would confirm whether the whole thing was utter bad advice first before I commented as I'm no expert, and I couldn't tell whether there was intended to be some 'unwritten hint' in it being 'this is what doctors are being taught about something else some of you might have'. Yes. It...

the second question is the following section from the article, particularly the middle paragraph. Where it says don't do all the tests for rheumatoid factor etc 'because they can give false positives or negatives......' What are people's thought on this? Is that strange advice? "Expect Normal...

I have a few questions the first is that this post suggestions the major difference in what doctors are being told is an emphasis on increasing movement What do people think of this? I know some people with fibro who said a difference is they need to do some gentle movement (which is...

The article is: If It Feels Like Fibromyalgia? 'It Probably Is' (medscape.co.uk) The MEA facebook post is: ME Association - What are doctors being told about fibromyalgia?... | Facebook What are doctors being told about fibromyalgia? There are a lot of symptom overlaps between ME/CFS and...

Just posted this as it has come up on my facebook feed. I've had a squizz through the first page, but as the questions at the bottom are specific that it is for healthcare providers and when you click no note that it isn't for you I didn't want to screw up any results just to peer further...

From the solve me/cfs initiative on facebook: Short Provider Survey on ME/CFS and LC (SPS-ML) (umassmed.edu) Please share with your provider! Researchers at the University of Massachusetts Chan Medical School and the Bateman Horne Center, Utah are inviting providers to participate in a survey...

Problem is the way the Facebook threads are working for these - because of the way the project is being sent via email so it doesn’t have a big advertising post when there is a new survey (I understand this is because of not 'recruiting' by social media to said survey) this means unless someone...

This a massive impact one the way it could be used is the issue. Ie a tool that could be used to undermine the progress made - and tbf was unnecessary to hand over to these people so it’s foxing why it’s happened it’s very weird when you suddenly get someone only listening to the person who...

Indeed it’s 50% less than before - so a lot of very fit or able people often g eg hidden under that ‘but you still pass the tests so you can’t be ill’ nonsense giving the talented people no leeway plus we don’t know when PeM hits fir all we know due to different cause or different fitness...

Yep there’s the issue with most of the ME/CFs stuff - not just juniors, yet you’d hope the fresh blood might have spotted it or have been keen to fix it if the critical thinking and research design in their education was right: to say that they needed to have design based around that research...

Spot on

This

well.... I use ME/CFS because the new Nice Guideline is ME/CFS (where the old one is CFS/ME) if the HCP I'm meeting is going to google it etc. But I still find that due to the notes and letters and drop-downs only using CFS that even though I state this isn't me 'being pedantic' but because...

I've got the following from the news item on AfME webpage: So was he the consultant for the Devon ME/CFS specialist service for a long time before this? I got the impression the feedback wasn't very good in Devon so I ask on the basis of there are merits to him being a 'fresh face' or having...

SO you'd think he'd had a good lot of involvement with ME/CFS for a while before then? @Cinders66 I'm guessing the research or 'working on' CFS he mentions he was already doing isn't something there are any examples or links provided for? or specifics re: whether he was in a clinic or in what...

It might be my memory vs a lot has happenned over the last few years, or just I've missed it but can I ask the question of why David Strain is writing this and suddenly seen as an expert on ME? From what I thought he suddenly appeared when Covid happened, and hadn't been involved at all with...