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there are a lot of possible explanations including misunderstandings. I reckon It’s not going to be productive for us to speculate further.

Maybe they had Parkinson’s Diagnosis as well otherwise it seems the Dr is using them as a guinea pig.

I have seen. My local one is closed and has admin works pretty well. I have followed one open group that attracts a lot of people many undiagnosed/newly diagnosed and uninformed where all sorts of weird stuff is discussed. Actually some pretty weird comments come up on posts from ME...

There are some people who post sensible stuff on social media.eg Tom K Sten H for example but there’s a hell of a lot of rubbish on there.

Slow walking definitely chimes with me. It’s like the Duracell bunny. I can walk pretty normally on good days for a while until the energy tank goes into the red.

One of the fathers of modern scientific psychology eh unlike MS who is one of the fathers of unscientific psychology

I saw someone posted that one of the main US medical websites (can’t remember which) that still refers to CBT/GET as a treatment him as the reviewer of the ME/CFS content. And it has been drawn to his attention. Would have thought that leaders in the field (as ME pedia describes him) should be...

Also known as British Rail tea or builders tea. My nana’s classic comment - you like yours about half don’t you. Goodness knows what she would make of my current brew - redbush. The other beverage based saying is my French friend describing instant coffee as jus de chaussette aka sock...

https://www.meaction.net/board-of-directors/ I don’t think this has been posted. The meetings are by video conference you don’t need to be US based.

Maybe they could also refer you to a physio who specialises in working with neurology patients to see if there’s any help they can give you

Ooh great term @Barry parasitic credibility

If I’m ever asked - by taxi drivers, people in cafes, shops etc I say ME is similar to MS but unlike MS there isn’t any medication for it. I think this and the ad campaign about arthritis will be beneficial for chronic illnesses generally in raising public awareness. I hope they get an...

I know stress is controversial I reckon stress due to caring for parent with severe dementia could have been a contributing factor in me developing ME. That’s purely down to timing and the start of insomnia. Maybe it’s not the best article but she’s talking from her experience not as a...

Surely not @Sly Saint :whistle:

Not my country but it does seem an odd way to approach it if the option to rewrite those guidelines is still on the table why wouldn’t getting that sorted be top priority. Although there is also a case for getting some quick wins to increase awareness. Maybe work is going on in the background...

i was thinking more about duplication of effort that working together might save some energy for those doing the work. Also I get the point about reinforcing messages in different sources but that assumes the intended audience all have the time, inclination and energy to watch a video, and...

Right and you probably don’t have real ME yourself

Seems to be quite an issue generally on social media and people with ME are no exception it does my head in when folks “follow” one particular doctor or theory like it’s some kind of religion, or think because they consider X has helped them and a few other people it’s a panacea for everyone with ME

So maybe working with Nathalie on a set of factsheets to go with her videos would be useful and avoid duplication?

This. Having had a job I couldn’t do anymore and had some time from my employer to try to work out what I could do and tried taking on a new role which I also couldn’t my experience was that managers say they will be flexible but in practice they don’t have any understanding or acceptance of...