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Personally, the worse my ME has got the worse my resilience has got, because it's like being stuck in a pea soup fog mentally and all this stuff is happening or might happen at any second that is utterly terrifying and you're alone, even if you have family around you you are alone with your...

This is something that concerns me. Both in terms of bureaucracy not recognising the need for nimble and accelerated trials/approval (of course within the parameters of safety and sanity), and more so, the creation for a few years of a two tiered treatment system, where people whose families or...

What factors might make it hard to find effective therapies as opposed to fairly simple as far as science goes? Is it just a case of teasing out the exact mechanism proving tricky, or could it be that the disease doesn't respond as expected/hoped to drugs targeting what we believe are the...

I wonder if there will be some doctors who feel very upset at the thought they have been causing harm. Doctors like my GP, who talked me out of my certainty that what I was experiencing was not psychological. He did this in what he believed was my best interest, but in doing so he destroyed my...

PEM got worse Claiming success :bored: I mean maybe the PEM will get better down the line but as someone with terrible brain fog i would not trade any improvement in that for worsened PEM.

I would also be interested to know the answer to this, especially in the context of this comment. So is it the case that if we have a first approximation of ME/CFS mechanisms a drug would have a much better chance of succeeding, or is it still a small chance?

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...