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One thing that drives me insane is how high the threshold for quality evidence is for us and how insanely low it is for these people...

I voted yes because of the Wust thing. I think its early days and they still could well find something big through LC research if it's done right. Complement system stuff is interesting and totally beyond me. I think Scheibenbogen tried to replicate and failed though? I also think the IgG...

We have a decent number of interesting findings that need verification/falsification. As in small trials that have not been followed up on over the years that could well lead somewhere. I can't think of any off the top of my head right now but there are a number of studies that should have...

Naltrexone actually reduces cravings and removes the euphoric effect of intoxication, meaning you no longer want to get drunk. The drug you're thinking of is the one they gave George Best back in the day...it makes you sick and throw up if you drink. Can't remember the name. People on...

Thank you Andy, I had missed that one. A futher question, and you're probably the person to ask it - is it possible that DecodeME could hypothetically find an association with this protein, if it turns out to be a factor? And would DecodeME finding no association with WASF3 mean that it is not...

Doctors are trained by the system. The NHS is institutionally biased against pwME and other disorders they consider functional. Doctors are trained to gaslight and not medicalise. They are judged by their peers if they take us seriously. The NHS is currently refusing to implement the NICE...

Do you have any more info on this? I have heard of the WASF3 finding and the fact the researcher wanted to do a drug trial (als drug?) but not of a mouse model.

I don't know if I can move past it. I have a supportive partner, parents and a few good friends who've stuck by me. A lot of people bailed or ghosted me when I got sick. Some cared but stopped checking in when it became clear I wouldn't recover. But the gaslighting. I avoid speaking to doctors...

Bit of a sidebar but I just want to point out that this in combination with my doctor's gaslighting was a big factor in me doing couch to 5k and ruining my health. I have a diagnosis of autism and at the time there was a blanket ventilator ban for anyone with that diagnosis. So I attempted to...

And herein lies so much of the problem. Ranty person (whoever they may have been...) used their influence in order to sway NICE to disregard the evidence at the 11th hour and is granted anonymity. If one were to even speculate on their identity one might get sued into oblivion. The scale of...

Im really sorry this happened to you. I think the only way to change patient experiences is for there to be mandatory training for all physicians that clearly states: we were wrong about ME. Patients were harmed. Your training is outdated. Here are the facts... Which of course would require...

Absolutely insane that anyone can look at the facts of this case and come to the conclusion that nothing could have been done. What a fucking joke.

Thanks for clarifying about NICE. To be clear I meant that it would not be necessary to wait for the results of the LIFT trial to do a UK LDN and mestinon trial. In that case the OMF trial should hopefully settle the LDN issue once and for all.

I think LDN/Mestinon are already so widely used/prescribed that I don't think waiting for the trial results would be necessary in that case. I don't know if UK trials are necessary for NICE approval? The others I mentioned would definitely be on the basis of positive trial results. POTS...

I understand your perspective, however I was talking about UK trials of drugs that are in trial elsewhere in the world on the basis of a hypothetical positive signal from said trials. Baricitinib being the exception and maybe that was a bit rash.

I am currently weighing up whether going into the surgery to get an issue checked out is worth the crash and covid risk, or whether I should wait weeks for a home visit. Doing nothing is not neutral because having severe ME means normal everyday things make you sicker. It is difficult to access...

Well that's a load of dangeous bullshit. The Millers and Wallitts of this world have a lot to answer for. Let's hope at an inquest someday.

Some drugs being trialled elsewhere for ME and LC that UK trials would be worth considering if the current trials bear fruit Rapamycin IVIG/SCIG Baricitinib Bc007 Truvada Daratumumab There is also a b cell depleting drug in trial for fibro in the UK, and tocilizumab for LC which should be...

There were leaked memos going round the covid groups a while back where it was literally NHS policy not to test for covid if you were sick. Like if you took a covid test and it was positive you got in trouble. Are we seeing a trauma response at an institutional level? This inability to...

Yes on some level they know they are charlatans, and they are terrified of a biomarker that exposes them as such, or a treatment that returns pwME to the public sphere to tell the general public precisely what happened to them and why.