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Just to clarify, is this a replication of the Australian studies from Griffith Uni we were discussing/criticising a few weeks back for having no replication attempts? Becuase if so thats big.

Why on earth wasn't this their target group in the first place given that they claim it works for ME? Honestly if ampligen turns out to be beneficial for a significant amount of pwME/LC... the amout this company have fumbled is just beyond belief.

Yes i apologise I realised my post was pulling the thread off topic after mods had already moved posts.

Unbelievable. In the 'what can be learned from ME and related conditions talk' they have Nath as the sole voice of ME researchers. The NIH is still not reaching out to the wider post viral research community and at this point there are no excuses anymore.

Agreed.

Agree with what you say about the goal being understanding enough of what's going on to develop treatments, not a diagnostic test. But having one would have prevented my decline from mild, because a doctor couldn't say that they couldn't find anything wrong with me and withhold diagnosis and...

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...