Search results

Disappointing. I wonder if this is true for the US NIH, who have all of that RECOVER money that they keep unwisely spending...

Also, I had an email from Bjorn at the ME fund. Essentially he said they were considering and taking advice on how to approach international fundraising and will follow up soon. No reply about Khosla, I think we should ask F&M or their team directly about that, and perhaps see what the OMF...

Almost certainly a stupid question - has anyone attempted to make the NIH or the UK funding bodies aware of the dara trial, thinking about it? Like, I am being deliberately naive here but why couldn't they fund it? Or even accelerate it? Apart from inertia and neglect etc.

I just found this on the HLA DQ wiki page - T Cells and graft vs host mentioned as well as autoimmunity. Seems potentially relevant if accurate. https://en.m.wikipedia.org/wiki/HLA-DQ The DQA1 page is interesting as well...

So you're saying this gene could potentially be more useful/relevant than the kind of HLA link that turned out to be a mirage? That's encouraging. I was a little concerned your pre DecodeME enthusiasm might have been heavily weighted by that HLA skyscraper. BTN2A2 does seem like it could fit...

Oh my god that thumbnail :eek::dead:

This seems like such a no brainer to me, I feel like any organisation serious about helping pwME/LC with NIH or even MRC/NIHR levels of resources would do this as a first port of call. Like 'obviously fast track Dara, and what else can we do?' And yet they're pissing around with GLP-1 and LDN...

If you have the capacity to expand on this at all I'd be really interested to hear about it.

That's disappointing! Here is an article about T cell tracers - it seems from the table in the article there are a lot that are preclinical and a CD8 one that is listed as clinical/pre clinical. https://jnm.snmjournals.org/content/63/2/183

I think you make some good points. Daratumumab could be our golden ticket but I remember (other spaces) getting hyped for ampligen, temelimab, efgartigimod, BC007 etc. It does look like the most promising of the 'happenstance' based treatments I've seen in the five years I've been paying...

Asking this again incase it was missed. Aware the scans didn't show lymph as we originally thought but could the technology be useful even so?

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!