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My understanding is many pwME have very bad reactions to steroids.

But treatment hasn't turned a corner - wtf are they playing at here? The whole article is about how we need research funding so treatment can turn a corner :banghead:

I have been in a long covid group from 2021 onwards and a huge proportion of people improved within the first couple years, many to remission level and left the group. The ones who didn't are still pretty much where they were or worse.

I developed excessive thirst and diuresis a long time before I became bedbound or even was significantly ill/disabled. I caught a vomiting bug when I was 17 and developed it afterwards from what I recall, and have struggled with it (and eczema) ever since, but when my ME/CFS hit properly at 26...

Underscore underscore underscore underscore underscore underscore....

Terrible headline aside, I just can't believe the MRC/NIHR have been so absolutely useless post DecodeME. Not that they weren't useless before. But not to see the opportunity staring them in the face here is just mind boggling levels of institutional incompetence and neglect.

So realism in this context is leaving us to the wolves? I quite literally despair.

I would like everyone who uses this phrase to have to spend a month in my body so they can learn the terrifying reality of what happens when you ignore PEM.

I agree negative results are important but as I understand it a breakthrough means a significant positive result that changes understanding of a disease.

Agreed, this would have saved my functioning and kept me from deterioration.

I keep seeing people saying locking down to protect the vunerable was a mistake. Because people think only old and disabled people died or got really sick. [*The media and governments during the lockdowns] were saying everyone who died who wasn't elderly had 'pre existing conditions'. But when...

The question is why this is necessary at all when there are 2 RCTs for ME/CFS due to report fairly soon? Maybe for replication?

Unfortunately she didn't! Yes I hope we see the paper soon, looking forward to her Charite presentation.

Just wondering, as someone who barely ever (seated) showers because of it, why people think showering in particular is such a big cause of PEM and OI symptoms. My rationale for this post is it might give some clue as to what's going on with us.

I don't think Habets should be doing what he's doing at all, but if he is going to do it he should at least use a dosage of the drug that might have an effect, rather than just cause anti drug effect/immunity. In light of that i think this low dose dara/Teclistamab nonsense is actually more...

Fluge said at Charite an American company was considering a trial in ME/CFS.

If daratumumab turns out to work, perhaps this anti CD38 CAR-T will be the future of ME/CFS treatment https://pmc.ncbi.nlm.nih.gov/articles/PMC10225187/

Okay then you have seriously misunderstood. F&M observed massive improvements in cancer patients with ME/CFS following treatment for cancer. So significant they were asking for more chemotherapy. They have followed this clinical observation through several drug trials, including a positive phase...

I'm not sure that anyone here is doing that?

I'm not a huge fan of Cort's 'everything is true even conflicting things' approach to MECFS science but the below quote sounds quite a good idea to me: