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I know we don't - sorry, your comment has very helpfully made me realise that my question was unclear, so I'll go back and fix it - thanks!

@Jonathan Edwards, if fixing the issue takes something as catastrophic-sounding as dara, why can't we find treatments that mimic what the bodies of some PwME do when they go into a natural remission? Is it just that we don't know enough to mimic in general what bodies do naturally, or don't know...

Isn't this a death sentence?

The survey has 88 questions! For severely ill PwME!!!!!!!!!!!!

So all the immunity we've built up to things over our lives would go, including that from vaccines (measles, etc.)? This sounds awful. Are people currently on such therapies for other things, and if so, what happens to them?

I trust Drs Fluge and Mella but I'm a bit surprised that anyone can patent a drug for a specific application, including the pharma company that created it. What is the purpose?

What are the implications of them applying for a patent?

Another project for when I'm a billionaire!

Why can they make more money by leaving good drugs on the shelf?

Apologies if I've posted this idea before - not sure if it ever made it out of my head - but I'm wondering if a natural experiment has already been done regarding some of the proposed treatments in this paper, that would help test its validity. Fluge and Mella tested rituximab for ME/CFS...

Yes it is, but have you seen the list of studies that Margaret presents? It's far to many to critique individually, so spelling out the principles as you have cold be a good way to make a response manageable and yet informative - maybe digging into the first one or two to give an example of...

How about using some sort of gadget that measures during the day whether your calves are vertical? The study participant could wear it for a day or a week or whatever, so you'd have a 'normal life' measure of what was going on, with no worry that you'd have caused anyone any payback. I don't...

Actually, answering Margaret's question in some depth might be helpful as an explainer for the wider audience of PwME as to why our vast literature of 9,000 papers that's always getting cited as proof that ME/CFS is biological isn't very useful. Someone said upthread that her big list of...

This has always baffled me, that practioners could endlessly hear people saying, 'Exerting myself makes me feel as though I have the flu' and not understand how abnormal that is. Feeling as though you have the flu isn't just an exaggerated feeling of being tired.

It's a good idea to email and ask, especially for anyone who is thinking about dropping a large sum - not sure if there might be special advice about tax etc.

That's what I've always done, but if we actually are immunocompromised and there comes a point where we can prove it and everyone accepts it, I was wondering what the situation would be. I'm certainly not intending to raise the issue in the healthcare system until that point! :)

If you mean you hear that that is happening to PwME with equal frequency or in equal measure, it would surprise me enormously. I've been made temporarily better - once, forty years ago, early in my ME/CFS - by what appeared to be a cold, and as soon as my nose started running, I felt amazing...

Would the fact that viral infections can make our ME/CFS much worse, possibly permanently, due to a weirdness with our immune systems not be a reason to be considered immunocompromised, or is being immunocompromised a matter of being at risk of death from exposure to infection?

If this theory is correct, would PwME be considered as immunocompromised? Or if we were on one of the proposed treatments? I'm wondering whether that classification would help us get some kind of special treatment in GP surgeries, hospitals etc. to protect us against infection as standard, or...

Copied post and some following posts moved from A proposed mechanism for ME/CFS... If this theory is correct, would PwME be considered as immunocompromised? Or if we were on one of the proposed treatments? I'm wondering whether that classification would help us get some kind of special...