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Ok. I'm not a scientist. It does spread incredibly fast though.

Yeah, as I said above, it's a good sign they've announced this, as it would be very strange to anounce the start of a project this large if you thought there was no hope of securing the funding needed to actually do the study.

I don't covid is a bioweapon or anything mad like that but I've seen a good amount of evidence over the years (I think there was a good article by Nicolson Baker and one by The Intercept but it was ages ago) it could well be a product of gain of function research, and I think that lab had been...

That's great to hear! Now there's just the small matter of finding the bloody funds!

Yes it's absolutely unforgivable. I can't even put into words how angry it makes me. And this project could have been a flagship program - as Chris Ponting says, it hasn't been done for any disease. It makes me sick that the MRC are so disdainful of ME/CFS they couldn't see the chance to blaze a...

So if the team got funding to analyse the DecodeME samples next week they would get started on it then? (Obviously being a bit hyperbolic here, the point is whether they will wait the full two years to start if they get funding to analyse the DecodeME samples)

Glad they've got funding to start but this is a very daunting gap in how much they need for the whole thing. I guess they wouldn't start if they didn't think it was realistic that more funding will be secured? Are they saying that once they get further funding they will immediately start work...

Unless those are from asymptomatic infections. Or so mild people put them down to allergies or a hangover or whatever.

I don't think it is a goal but considering the stats on the amount of people who have ASPD in medicine and psychiatry and the disingenuous arguments the BPS people use e.g. about Maeve Boothby O Neills death, I think its likely that some of these people know they are causing harm to us and do...

Yes you're right, I apologise.

I think it's very telling that his response was to twist what the letter said into 'we need to make a home for MECFS in rehabilitation'

The thing is, a lot of treatment for panic attacks and anxiety and things that are lumped under that umbrella teach you to divorce yourself from your physical sensations, which are seen as erroneous. I became very good at ignoring a lot of very unpleasant sensations. And then very good at...

This is all well and good for your mild person who has to adjust to living with chronic illness but how does it help people like me who are housebound or bedbound and dependant on care because of medical negligence? I don't want someone to boost my confidence, I want someone to research what the...

I fear it's the standard BPS/BACME model of acting like they agree with an initiative, getting involved and then turning it into a way to get more rehab bullshit funded.

Thank you Jo, Michelle and Joan for writing this important letter.

Why is the governments approach to MECFS just to lie through their f-king teeth and say they are doing things they have no intention of doing? Funding SequenceME made so much sense. Yet somehow they think they can refuse to do it, or provide any severe ME services or care, and still smile and...

But it would give us a vital clue and show you could make people feel much better than any GET or CBT approach can from an immune treatment. Which would help our cause a lot. To say nothing of the fact you would have a treatment (unless there were problems giving it long term), which would be huge.

I think the original proposal was that it might break the signalling loop and make the patients feel better.

But when MECFS patients do get severe viral infections, yes some report feeling like they dont have MECFS while sick but many also get worse for a while or permanently.

I suppose my questions stem from the fact that if we think there is a reason to do an experiment like this, either MECFS Sciences idea or JEs, and it is relatively safe, it could tell us one way or the other whether certain cytokines are involved in a signalling loop in MECFS, and potentially...