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I cannot put into words how utterly demoralising it is to see the BMJ not only publish but request this article, especially during ME awareness week. That timing cannot be an accident. The most dangerous thing anyone ever gave me for my ME was false hope. Even if we cannot hold individuals to...

I know ME Research UK has funded some of Rob Wusts muscle biopsy work, so they might perhaps be a good fit?

Lets hope it really will say it in the history books.

I was offered a trip to Leeds (from Suffolk!) by an OT in 2023. Luckily my first reaction was to think that it sounded too good to be true and to come on here and see what people said...

There is something unspeakably sick about medical professionals saying that someone whose life was destroyed and ultimately ended as a consequence of listening to them actually just needed to listen to them harder and do what they said more. These people are absolutely monstrous. I really hope...

Yes I would happily donate to this project and I'm sure that others would as well.

Yes that is true, she did say that. I wonder who the company is...

Possibly stupid question- If it does turn out that there is a relationship between NK cells and drug action as opposed to disease process, is there a way to increase NK cell numbers in low NK patients so that when they get dara it kills enough b cells? Or would that be impossible/undesirable...

In the q and a fluge says that an american company is considering a trial of CAR T therapy for ME/CFS, but he thinks it's too risky at least at present. He says maybe in 5 years...

Thanks, very interesting! That would definitely explain some of the puzzling things about ME/CFS. He could really play, couldn't he! I'm a guitarist and while I was no Django Rheinhart my main area of talent was improvising lead guitar. When I had mild ME I often found that when I was jamming...

Can you say more about this?

Yeah, that's concerning, but it's two patients and the NK business could explain it. We will have to wait and see what happens to severe patients in phase 2 I suppose.

Wait was that 1700 pre or post treatment? I'm not clear

So is it possible the errant signaling might be affecting any and all synapses? Just sort of randomly throwing spanners in the works? That could explain why PEM symptoms can be so variable from person to person and even crash to crash. Or does it have to be somewhere specific in the brain or...

This is facinating to me because my OCD has gotten so much worse as my ME has progressed, and that often feels like an inability of the brain to sort of 'forget' facts or memories that most people would be able to, and so the brain keeps sort of scanning or interrogating them over and over...

Immunoadsorption trial in ME/CFS Elisa Stein, Charité - University Medicine Berlin, Germany 10:10 10 min Immunoadsorption in severely ill ME/CFS Georg Schlieper, Dialysis Hannover - Center for Kidney, Hypertension and Metabolic Diseases, Germany 10:20 30 min B cell depletion targeting CD19...

That's still very impressive from moderate!

Do they mention how big the improvement was? The FB group was reporting 10,000 steps in the responders, was that the case?

That's a little ominous - I suppose we will just have to wait and see if severe patients respond in phase 2...

The million dollar question is, do the non responders have a different illness or is the upstream cause the same in both? And how to induce the same effect in the non responders...