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This will be used as evidence not to close schools in the next pandemic, which will cost lives. Really really irresponsible. Not surprised it was funded by Bezos considering our corporate overlords maniacal desire for pre covid levels of consumption. It's a shame about all the human beings...

Honestly wasn't aware of this ad campaign but it's sickening. It's not only pwME that can't exercise/move their bodies. Using disabled athletes as inpiration porn and examples to chide and shame other disabled people who aren't fortunate enough to be able to move as freely is disgusting.

This is somewhat heartening but I wish institutions/companies would just fund ME drug studies, instead of saying 'oh maybe that at some point'. Long covid is more believed but it's not like it has a biomarker that ME doesn't. The logical thing is probably to push for non covid ME/CFS arms in...

Yes I am sorry to hear about your patients. That sounds awful. I didn't mean to minimise that harm. I know Sharpe has never actually said people are not sick but as someone who has gone through the ME 'care' that the NHS provides, that is how it is understood and how you are treated. Saying...

I understand your point, and I'm not saying that alternative treatments that don't work are harmless. But I don't think what the likes of Sharpe have done is comprable. It is of several orders of magnitude worse in both effect and moral culpability to declare people with a disease are not sick...

I have no opinion regarding this specific case but it is rich that doctors like Myhill are being stuck off for providing unevidenced treatments whilst the NHS continues to ignore NICE and harm another generation of ME and long covid sufferers. GET and telling patients their symptoms are linked...

To be a fly on the wall... Especially interested in what Hwang is saying.

This is a closed meeting right? No videos made available after? Interesting about no Norwegians.

Absolutely, I find ibuprofen for example masks symtoms (esp when i was mild) and leads to crashes if I'm not careful. But you would assume that they are talking about a drug that will stop/lessen this mechanism of damage that their study seems to identify rather than one that lets it go on...

It would be very interesting to know more about this drug.

Frankly, I'm too severe. Im at the milder end of severe but can't keep on top of my own admin and medical care let alone commit to anything like that. I wish I was well enough to do things like this and advocacy but the sad fact is that when you're severe the cost is generally too high.

Chilling. But this obliviousness is the reaction I got telling a doctor how much sicker GET made me. He shrugged it off and recommend...more GET. These people honestly live in their own fantasy world and the scientific community is enabling them. A whole discipline full of naked emperors...

Change won't come from doctors believing us. Not at first. It will come from good quality research. The public, governments etc will all change their outlook before doctors do. Most doctors will have to be shown a solid biomarker or a treatment that helps significantly before they let it go...

This was the rationale behind the LDA trial that was rejected (with the infamous 'its depression, give them antidepressants' aside to Ron). Why does it work for some people and what happens in the body when it stops working. Could possibly have taught us a lot. Yeah as a former smoker I would...

That is a very good question. Especially with abilify, Davis had a study of that ready to go and the NIH shot it down. I don't know where they're currently at with all the itaconate shunt stuff, perhaps they are not ready to do a study yet. JAK inhibitors obviously have serious side effects but...

Interesting. I hope this other study gets funded. But it does really frustate me that Davis himself can't get trials funded. I don't believe he is our annointed saviour like a lot of pwME but he is incredibly intelligent and driven, and the NIH refusing to fund his lab for the last decade plus...

I don't know where the right place is for that kind of story, but I would certainly be interested to read it. And I wonder if you have been in contact with the Norwegian researchers? They might be interested to hear your story. I really hope Daratumumab can show a similar effect with less...

I think this came out the same day as the blood biomarkers study, so it didnt get much attention. I'm curious as to what our resident scientists make of this? Its being touted as a Big Deal in other corners of the internet.

In a sane world the DWP would be legally prohibited from funding this sort of thing, especially after what happened with PACE.

I have heard anecdotal accounts on the long covid sub reddit of precisely this. In the context of Wes Ely’s Baricitinib trial, people saying they take it for RA and it hasnt helped them. There may have been others who say it has helped them but I can't recall right now. It may well help a...