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Do you have a copy of this letter? Do you know who or where it came from? It would be useful to have a copy.

Could you email him, maybe with a covering note about the DecodeME data? His response could help to inform us what more we need to do to convince more doctors and scientists about the issues and to persuade them to get involved.

This reminds me a of a conversation on another thread: I don’t think you answered but I would be very interested to know.

Jonathan, one thing I don’t get is why the doctors can see the biobabble, which in some cases can be difficult to assess and may be beyond many doctors level of knowledge, but not the psychobabble, which seems far more obvious.

This is good to know. The work Sonya has done transforming AfME is at least one cause for optimism. I have never raised money for AfME before but I am minded to start fundraising for their research work.

I had the same thought. Most people on here are pretty stretched but I think it would be worthwhile if there are people with capacity who are willing to volunteer. Tagging @ME/CFS Science Blog in case this is of interest. It might be useful to show that the opinion is shared by ME/CFS...

True, but ME/CFS is not unique in that regard. Social media is rife with people acquiring legions of followers spouting nonsense on all manner of subjects – and the problem is not confined to social media. They don’t want to embroider their illness with bogus physiology. They are desperate for...

I’ve not kept up with developments but weren’t they doing FMT trials? I would be surprised if crowdfunding and combined charities couldn’t raise most of funds, or at least enough to get it started if it were broken down into modules. Again, I’ve not managed to keep up with developments but...

I’ve not read the book but I listened to the interview. It may be that I’m misunderstanding but seems to me that Brian’s criticisms are more relevant to psychotherapy (or psychology associated with therapy) than to the broader field of academic psychology. The latter may be beset with many of...

Yes, and it makes me wonder how many other people with relevant expertise might have been overlooked. I hope someone will raise this at the meeting. It should have been someone’s job to invite relevant people. It beggars belief that Jonathan wasn’t invited. I wonder how many BPS proponents...

Do you anticipate that any of ongoing analysis will be made available before it is formally published in a peer reviewed journal?

I asked ChatGPT to summarise published research on bone-marrow pathology in ME/CFS. If anyone is interested, its answer is here: https://chatgpt.com/s/t_6901fec4ce4081918f31f4f104ed4780

I’m not able to follow most of this thread due to capacity and lack of knowledge, but it is encouraging to know that these discussions are happening on here and hopefully elsewhere. Since the DecodeME preprint was published it feels as though there may now be enough data available for people...

@Veronica I thought this might be of interest if you've not already seen it.

True, but I suspect it will get exactly the same sort of reply.

Yes, I broke my X boycott to read the responses and couldn’t resist chipping in with a reply to the RCGP. It’s heartening in a way that she appears. to be so unpopular with doctors. I hope it may cause some of them to question whether ME/CFS patients’ concerns about her might be valid after all.

ChatGPT tells me that she will become Professor Baroness Gerada.

This is so disappointing but not in any way surprising. I note from the report in the Independent that she was recommended by the independent House of Lords Appointments Commission and will sit as a crossbench peer...

Brilliant. I felt quite emotional watching the standing ovation video. You and the community have come a long way since we were being portrayed as dangerous anti-science militants. And this recognition is an important symbol of that progress. Of course, there is still a long way to go but this...

Not sure if this is the right place to post this but I thought some people here might be interested to listen to this podcast in which Adam Buxton talks to George Monbiot: There’s no mention of ME/CFS as far as I remember but I enjoyed listening to it and I was interested to learn more about...