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Well, I used to absolutely hoard books in my postgrad days and also have a stash of graphic novels that might fetch a little bit of money. They are taking up space at my parents' house currently (which might be why they agreed to help!) I can barely ever read paper books now, which sucks. But I...

I am planning to sell off a good amount of my musical instruments and gear, as well as a lot of my books (I have far too many books) and donate the proceeds to ME/CFS research. I was thinking of donating the proceeds to the AfME/Edinburgh fund, but the daratumumab phase 2 funding situation has...

I would really like to know if F&M have secured any more large donor funding. Do you think it will be announced if/when they do? Or only when the trial is fully funded if we get to that point.

I can't tell if this is a joke I've missed but if it isn't- what kind of name and to what end? Like an all caps acronym name like e.g. REJUVINATE?

Oh dear, I made a mistake in my letter. I attributed the project matt video to the ME fund. No reply so far. Hope that wasn't a factor. I would be uncomfortable with a fundraising campaign promoting a trial using that sort of video without also putting forward serious caveats that the video...

Ah too late, I sent it off this afternoon! No reply so far. I've donated a couple of times myself and will encourage family to donate in the next few days.

The email is half drafted but I've been rather crashed this weekend so it's going to take a little longer unfortunately.

Replying to a post saying that when a disabled woman experiences bias it’s the bias against disability compounded with bias against women: I want to point out that this discussion morphed into one about the experiences men and women have with chronic illness before I posted in the thread. So...

This is precisely the technique that was used on me. Ironically, the psychological fallout of realising that I fell for it and it destroyed my life has made my mental health worse than it ever was before. And it was pretty bad before!

Responding to a deleted post: I entirely accept that there are specific ways in which women have it worse, and that there are different dynamics for women who are chronically ill. However, there are specfic dynamics to how the expectation and performance of masculinity play out among men that...

While I don't want to diminish anything that women go through, my experience has been that the minute you express what doctors consider undue concern about your health, or suffer from an affliction they cannot immediately diagnose, you lose a good proportion of whatever privilege being a man...

I've just seen this comment. Apologies for making you explain again in the other thread! What is it about the immunology that makes the responses look real?

The fact that they decided on these drugs after a year of deliberation is a scathing indictment of the NIH. How is it possible that they chose one drug that we know barely helps if it helps at all, a fad drug being touted as a cure all for everything, and a poorly evidenced and risky treatment...

Interesting, thanks for taking the time to explain that again.

@Jonathan Edwards i just followed the link posted above on this thread through into this other thread and stumbled across this comment from several months ago - am I right in understanding that what you said then is the opposite of your position now - that you now think the inhibitory effect on...

It is a spectacular own goal. And handy for us as an illustration of their utter uselessness.

One of the most powerful arguments that convinced me my doctor was right about my illness being psychogenic (obviously he was wrong) was that I didn't want to be one of 'those' people. And yet my doctors were wrong and my faith in them and the scientific establishment was shattered. Medical...

The idea that JAK STAT inhibitors could be beneficial for ME/LC is not exclusive to Ron Davis' group, or a pharma conspiracy. Iirc JE et al. even suggested them as one of the possible treatments in their hypothesis paper. Whether they work or not, we'll have to wait and see.

The juxtaposition of these two headlines says everything that needs to be said about the psychobehavioral school.

I do sort of resent this idea that we as pwME have to be perfect like this. I understand why, but outside of the scientific advocacy we do on here I think it is too much of an ask. The vultures will descend to pick apart what we say no matter if we're perfect or not. Look at what they've said...