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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...

Would this be dangerous e.g. by leaving people immunosuppressed?

Do we have good evidence that is also the case during PEM? And I thought the signalling could be happening outside of blood anyway. Surely this carries a pretty good risk of amplifying the feedback loop, making people sicker and perhaps even more severe long term. I see what you mean though...

Oh right, my bad!

I think this is a really interesting connection to the PVN because the PVN apparantly mediates osmoregulation and so many pwME have issues with dehydration, excessive thirst, exessive and frequent urination (and sometimes in PEM the opposite - I need to drink loads but barely pee at all) etc. It...

Is there anything that the ongoing analysis can do to clear this up somewhat or will we have to wait for SequenceME?

I agree with this. But something I don't understand is why we are seemingly more hesitant about the immune system genes - e.g. OLFM4 or BTN2A2 likely being the genuine article, when we broadly suspect a brain immune signalling loop and these genes implicate things like interferons and T cells -...

Yep, the endless merry go round of blame!

I think this perspective makes me particularly angry because I was doing precicely that when I deteriorated from mild. Trying to come to terms with and heal from trauma, build a life that was more suited to me away from academia etc etc. And yet my voice is completely ignored by these people...

The delusional beliefs here have been legitimised and amplified by every health institution imaginable. Just because the BPS narrative stems from the 'it's all in your head' bollocks that people have believed since time immemorial is no excuse. It is as if instead of combating climate change...