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Just a thought... I was listening to Adam Buxton's podcast this afternoon and I wondered if it would be worth asking him if he'd do a shout-out for Decode ME? (By shout-out I mean briefly inform people about it and provide website!) He occasionally does things like that if it's a charity he's...

100% That's his approach. He likes to make out that we only reject his model of ME because it's psychological when he must know full well that we reject it BECAUSE IT DOESN'T WORK! It's a way to make it appear that we're the problem, not his research. It's ridiculous and so incredibly...

I don't know if this has been posted elsewhere but I thought it was very interesting. I wonder if something like this might end up being helpful for a subset of pwME... https://www.theguardian.com/science/2022/sep/15/scientists-hail-autoimmune-disease-therapy-breakthrough-car-t-cell-lupus "In...

Very interesting, thanks Simon.

Looks good @Simon M , the visual makes it easier to grasp the concept.

Thanks @Andy that's really helpful, I'll give it a read.

Thanks for clarifying this. The reason it made me pause for thought is that my NHS records contain a lot of personal information that has nothing to do with ME and I hadn't considered how I feel about somebody having access to it all. If it's just codes/data points though that's less of a concern.

Chris Ponting was brilliant on radio 4! I hope they'll be more radio coverage, I think it's a great way to get the message out there.

@Andy I have a question about the option of sharing data from NHS records. I'd like to clarify what this means - do the team get access to everything that is on record (letters from doctors etc.) including info that is not related to ME? Or is it a specific set of data like blood test results...

email safely arrived here - very happy to see it!

I can't make a judgement without reading the whole book.

Yes, the value of ruling things out shouldn't be underestimated. Just on a personal level, if there had been proper trials into all the things I've tried over the years it could have saved me ££££ as well as much confusion and disappointment. (And £ and good mental health are two things that are...

I think he's speaking from a personal perspective rather than a social/political one. As individual patients, we may find it healthier, on a day to day level, not to be tied to the rollercoaster of hoping for a treatment that works. I know I do. And that's how I read the article. Advocating for...

Thank you for sharing this @Manuel , it sounds very interesting. I am not a scientist and don't have the understanding that some people on this forum have. However, bits of your paper stand out to me on a personal level. I have a close family member who has had Burkitt's lymphoma and another...

I just read this thread on twitter about the chrysalis effect: There's a tweet that I think is very accurate that says: "Elaine Wilkinson has a background in MLM and business coaching. She talks big and courts people, then she bigs up the meeting, and her achievements and influence. Chrysalis...

A bit of Linkedin networking from Chrysalis Effect founder Elaine Wilkins: https://www.linkedin.com/feed/update/urn:li:activity:6948266738266349568/ She says, "we have broken through and have extended phase 2 pilots running in Cheshire and Wirral, the West Midlands it’s Integrated Care Sevice...

I have a couple of friends who are working as lecturers and finding academia very stressful at the moment but that might be UK specific (lack of funding for universities etc.) Having said that, I think if he's got funding to do a phd it could be a good idea because you can work flexibly. He...

Do not go into teaching is my advice. (Based on experience!) Sad because it's a brilliant career and I really loved it. But it's not worth your health.

I think at this point it would make sense for DwME to do an evaluation of existing communications to see what's working and what's not. Clearly pwME are not their target audience. I assume that their target audience is doctors and policy makers who are not already involved in the ME field. Could...

I've given the statement a better read through. I agree with Trish, some good ideas but it needs to be edited for clarity. Some of the sentences are not well written. Has anyone else been able to watch the video?