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This is where I think something like the kind of social media campaign I talked about before - short videos where the BPS people's recorded statements about pwME and LC that show their hypocrisy and contempt is juxtaposed with the lack of good evidence for their therapies, reports of harm...

I never meant to say it would be easy! And I'm not sure how to interpret the second part of your reply o_O

Yes I would also take this risk in a heartbeat but would have to think very hard if I was mild and things continue to pan out as JE has been talking about with the science.

So the next steps at this stage might be something like: 1.Studies to explore/confirm hypothesis of pathways and cell populations involved 2. Trial drugs that broadly block pathways or remove cell population 3. Studies/hypothesis to narrow down which particular signals are involved 4. Trials...

That's good to hear it's not incredibly complex to do. Is it also perhaps the sort of study where recruitment could be done through the DecodeME cohort to speed things up and help with selection?

This is not the first time youve mentioned elispot/fluorospot! Is this this something that can be set relatively cheaply, easily and speedily or is this kind of experiement lengthy, costly and expensive?

Well, I think it goes without saying that we all appreciate your efforts! I remember how hard doing academic humanities work was with mild ME, I can't even imagine throwing lab experiements into the mix! Are the lab experiements ongoing or are they still being planned/set up? Do you have any...

Could this explain worsening through exercise/exertion? As in this itaconate and ROS response is triggered over and over and more frequently each time until it takes very little to trigger it? Also if this throwaway hypothesis is correct, or just if we're in the right ballpark here, what kind...

Perhaps someone should email Rob and invite him to come on here and discuss this? I remember he was still occasionally posting on Phoenix Rising a few years back.

Very clear thank you. Just one more question - when you say solution here, do you mean the sort of biological-mechanical solution to the 'problem' of ME/CFS, i.e. what the pathway/processes that cause it are, or the solution as in an effective treatment?

https://en.m.wikipedia.org/wiki/Gene_knockdown Ah interestingly I googled the phrase, came up with this and decided it wasn't relevant! But clearly it was :banghead: Thank you for clarifying!

By knock down data do you mean like the knock your socks of eureka moment data? Or something else. Also are you saying that the particular pathway step in your theory involving b cells is likely wrong or the entire thing? I must admit I'm on tenterhooks over the whole thing!

Anecdotally I am in an international long covid support group because my ME got much worse from covid and I would say that a huge proportion, almost certainly a majority of the participants report PEM. But of course these are the more severe and chronic illness aware people. People who have 6...

Anecdotally I am in an international long covid support group because my ME got much worse from covid and I would say that a huge proportion, almost certainly a majority of the participants report PEM. But of course these are the more severe and chronic illness aware people. People who have 6...

Thank you that's perfectly clear. I thought I must be getting mixed up somehow! Brain fog and not being a scientist make these conversations tricky to follow sometimes!

So are you saying that there may not be as strong of a relationship between itaconate and type 1 interferon as other studies suggest because they use itaconate derivatives rather than natural itaconate? Could you elaborate on the great potential for connection you see between your work and ME/CFS

I have that freezing thing. I have been experiencing it more recently. As Jem describes, freezing for 3-10 minutes then it loosening up. Sometimes its more and sometimes I freeze and then unfreeze and then freeze again for a while. It feels like the brain cant move the muscles, rather than the...

On the subject of DecodeME, @Andy @Jonathan Edwards Can you provide any update on when DecodeME is due to publish? Or is it still 'as soon as it's ready and hopefully before August'?

It is really unpleasant. I have gotten used to the more background level stuff, but to have your brain be like 'no, you need to die' and not even be well enough to call a friend is awful. And to know that you are in dire circumstances and your quality of life really is so awful makes it much...

Just anecdotally, I have suffered from suicidal ideation since my late teens. It became much worse when I got ME, has become even worse as my severity level has increased, and becomes very intense when I crash. I'm not sharing for sympathy but because it often feels like a consequence of...