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More info on Prof Carding and his work on the intestinal microbiome and possibility of immune responses in ME/CFS here https://quadram.ac.uk/people/simon-carding/ Somewhat sceptical of talk of gut causes everywhere, in this and the Imperial work. But it seems popular. And getting more data...

They say pain is comparable to an injection or blood draw and that would be something. Although they were applying topical local anaesthetic, something you don’t get in those. So its maybe a generous comparison. It could be an improvement but I’m cautious abiur how feasible this is going to be...

Thanks for trying, a shame. Survivorship bias can be strong even in the intellectually smart. I often wonder if it’s more prevalent in the successful as they attribute the success directly to their own efforts and discount luck. Good or bad.

Sorry, I haven’t been through the full thread. There’s lots of specific details that I think we need not just in terms of service provision but to make the NHS work for us and be a safe place for us. Right now it isn’t at all. But to look at it another way I’m increasingly thinking that just...

Absolutely agree. And with other conditions there’s a lot of variation of needs between people and a lot of custom solutions. I think many of us do without them or are forced to find them ourselves rather than having experts who see a wide range of people so learn what works and can efficiently...

I found voice recognition and dictation incredibly weird to start with. As the technology has improved and as I’ve just been forced to get used to it I found it incredibly useful, not as a replacement to writing but certainly is a tool that I now find invaluable.

Oh I don’t know I think they really do. What they do not want to be is people who say ‘I don’t know’ or ‘I don’t understand his’ or ‘I may be wrong’. I get the the impression they very much want to be very important doctors, consider themselves very very clever and have an answer and explanation...

One of the genes flagged by PrecisionLife I came across while exploring is RERE It didn’t seem to fit into any of the clusters in my cluster analysis particularly well (or any I was initially interested in) so didn’t jump out, Maybe because it is quite widely expressed in different tissues...

I don’t have much to add without screaming or swearing so will retreat to the science. But we will be screwed if BACME just get bigger contracts with conditions to include severe people in their pathways. Burn it all down. There seems to be people afraid of losing what they’ve got, be it their...

It may work through their podcast feed… https://www.bbc.co.uk/programmes/b019dl1b/episodes/downloads

All programmes are also available (at least in the UK) to listen again to on Sounds https://www.bbc.co.uk/sounds/play/m002rql7

Thanks @Ravn Yes thst seems to be the problem we face in multiple places doesn’t it. People genuinely believe they are helping, basing things in evidence and doing good. I’m sure we’re all guilty of the same at times! Persuasion is tough, especially to people already facing so many disbelief...

People interested in the glutamatergic signaling theory may want to look at the papers in this thread, there’s some interesting ideas and some evidence of involvement in mental and physical fatigue as well as mood changes following interferon treatment and in MS, with astrocyte cleanup/recycling...

I’m glad talking about the mood changes is of help to people. And thanks for sharing your experiences @AliceLily it certainly can be a rollercoaster at times, clinging on while you ride it out but not knowing how long it’ll go on. I’ve ended up in predictable fluctuations throughout the day in...

Programme description below. They’re speaking to Chris Ponting about DecodeME so that’ll be excellent, they’re also covering the Rosetta Stone study with Professor Rosemary Boyton who I’m not familiar with but is a colleague of Danny Altmann.

Agree this is another concern. We needed good services with good support to do trials safely and ethically. An app to flag a problem is not good enough when your support needs go through the roof from side effects of a medication and your quality of life is significantly worsened.

Ah, I never got that far into the process. They promised things to my family and got hopes up, then I spoke to them and there were loads of red flags like them refusing to make any accommodations for my needs so I stepped away. I can see it being a money pit for desperate patients.

Ah, so they’d still be the key strut but less visible. Interesting. I suppose I was thinking maybe there are various routes of, say, interferon stimulation. And maybe the sum of all those is the problem. So depending upon which dial you have most ready access to, or which is most significant...

Agree. It’s all so disappointing.

It’s not. I really like a lot of what AfME do but unless it’s changed significantly since my last contact with it has nothing of use for severe people but is useful for those who are mild/moderate and want and can afford to try out various off label things.