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That is interesting. I wasn’t aware that ariprazole is reported to have anti-fungal properties. (See: https://www.sciencedirect.com/science/article/abs/pii/S0924857919301335?via=ihub and https://pmc.ncbi.nlm.nih.gov/articles/PMC11238555/) Not that I’m aware of, which seems odd given the former...

BlueSky post from Whitney Dafoe: : “I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS” “New post on my blog...

Thanks. She has met Sonya and asked to join, but I’m not sure if she is officially a member yet.

I wondered that. Its webpage on funding seems to be out of date: https://www.cochrane.org/about-us/our-funders-and-partners But if Cochrane received over £1 million from the NIHR in 2019, and possibly more since then, I wonder if it might still be worth raising with the DHSC, if only to get it...

To date we have only discussed submitting oral and written parliamentary questions but I think she would be amenable to asking questions of other organisations – particularly if they had any accountability to Parliament. For example, my previous MP wrote various letters to Sir John Savill at the...

My MP has indicated a willingness and enthusiasm to submit questions about ME/CFS on my behalf. Any suggestions for anything she could usefully ask of anyone pertaining to the Cochrane review of exercise therapy?

Thanks to @Sasha for highlighting my fundraising. Sorry, I’ve not had the capacity to join the discussion until now. I haven’t managed to read all the comments but here as some thoughts in response to some posts. I strongly agree with this. I know people with ME/CFS who have spent fortunes on...

I wonder if SW and Dame Clare are libertarians. As far as I’m aware they are friends with Fiona and Claire Fox, and I seem to remember CG was anti-mask on Twitter before doing a reverse ferret. (I’ve not followed the Cochrane mask controversy but I wonder if it was the same libertarian forces...

Bayes’ Theorem is the more conventional form but I always add the extra s to the possessive form of singular nouns which end with an s. To me, it adds clarity, which is what grammar is for.

This is one of the examples I was thinking of: From X: “Simon Wessely co-authored article criticising NICE decision to prioritise long term outcomes in assessing treatments for ME/CFS. In response Barry et al cite statement by Wessely, Geralda et al which calls on NICE to prioritise longterm...

Yes. I don’t think this argument is as well known or used as it should be: if one accepts that the therapies don’t work, the psychological harm is self-evident. As I once wrote in a BMJ rapid response, it is concerning that it is predominantly people who work in psychological medicine who...

I can think of one rule that would make a big difference: Apply the same standards to research of therapist delivered interventions (particularly in psychological medicine) that are applied to other types of medical research (particularly pharmaceutical interventions). I’m reminded of the reply...

It’s a shame S4ME isn’t on the list, although I am assume there will be quite a few active members of the forum who are involved as members of other groups. Do we know if it’s too late for other groups to be included? @Jonathan Edwards Are you involved with the Task and Finish group?

Yes, but important to remember that the Oxford criteria does not preclude severe patients. The FINE trial used Oxford and included severe patients (about 10% not ambulatory, I think). And it produced a null result, which may have influenced subsequent study designs.

Susie Dent on Bluesky (https://bsky.app/profile/susiedent.com/post/3l364skjisk24): “Word of the day is ‘catchfart’, from the 17th century, used of a servant who followed their master or mistress a little too closely. In today’s terms, a catchfart is someone who fawns upon the boss or who...

I think that is unlikely as he was given IV antibiotics on multiple occasions over the course of 18 months. The improvement followed the 10 day course of anidulafungin (and Covid) which he’d never had before. Similarly, he had been on various doses of steroids for a long time. NB I have been...

These are the links that Graham sent me of studies which report finding infections masked by fungal infections in people with chronic sinus symptoms, and also some studies which reported finding e-coli in the sinuses, as that was relevant to his case: 1) Mayo Clinic Study Implicates Fungus As...

Excerpts from conversations with Graham: Me: “Graham, Out of interest, do you think the IV anti-fungals they gave you in hospital might have made any difference to any of your ME symptoms? I appreciate that isn’t a very scientific question, and I wouldn’t ask it publicly, but I’d be interested...

Anecdotal evidence of improvement following anti-fungal treatment As some of your may recall, when Graham McPhee was in hospital with recurrent sepsis, his son @IanMcPhee reported that he had been prescribed anidulafungin (an IV antifungal drug), following which he noticed improvement in his...

Further to my post above: I've no idea if the movements I get are the same or similar to other people with severe ME/CFS but I would put mine in to 2 categories: 1) Involuntary movements when I'm semi-conscious: When I am waking up, going off to sleep, or "resting" in a semi-conscious state, I...