Search results

Eight individuals? Is that normal for this type of study? Sounds like they only studied eight acute covid patients and extrapolated about long covid from there? Is this a valid approach? This sounds like the sort of vicious cycle and the sort of treatment we have been speculating about on...

What does this mean? Have we seen any of these genes before?

Its absolutely insane how many NHS staff still believe covid isnt airborne. This was Feb 2020 but could easily be Feb 2025.

That is very true, I did them a disservice!

This really shows how deep the 'blame and stigmatise the patient' rot goes. And that it was reinforced in training to treat the patient with suspicion. It must be your fault you feel ill. You must be an alcoholic (which is still a very stigmatised condition) or have AIDS (still an extremely...

What are the possible culprits? Or would the list stretch from here to Jupiter...

Should this say 'doesn't '? It is absolutely galling that she and Wessely are allowed to pretend that they cared about people with ME/CFS whilst having devoted their careers to maligning us and doing away with ME/CFS as a diagnosis.

This is something I was getting at in another thread yesterday. This idea that you are responsible if you don't get better is so toxic. You see it so often now in discussions of mental health. X person doesn't deserve sympathy for their struggles because they are not being a good little patient...

Well, it seems like the results of this never appeared. Does anyone know if it was abandoned or if its been postponed for some reason?

This sounds like an absolutely facinating and necessary book. Psychology cloaks itself in liberal/left wing trappings but when you really look at a lot of the ideas and practices it perpetuates and reinforces they are distinctly conservative and victorian/edwardian.

I am baffled by this. Why anchor a funded trial of a class of drug that has shown real promise in a pilot trial to a trial of a class of drug that has failed phase 3 and therefore will struggle to get funding?

I began to have symptoms that were dismissed as psychosomatic at age 19, and developed full ME at 26. Being told repeatedly as a young man that you are experiencing awful, unquantifiable sensations, insomnia etc because you're weak and anxious and unhealthy by medical professionals is...

That does sound very ambitious. If it wasn't for her apparantly saying they want to start at the same time I'd say that meant they were starting AIM ME before PIONEER. Which frankly sounds like a better plan than stalling until the CD19/20 trials can go ahead.

This particular monoclonal is made by Sanofi, who recently agreed to let Scheibenbogen trial their CD38 inhibitor in ME/CFS. So if there is a rationale for trying their OX40 monoclonal in ME they might well be amenable.

And then use the publicity to get even more funding for services that don't help anybody!

That would be useful to have for future reference if anyone does find it!

This is absolutely sickening. They've sewed up both sides of this 'debate'. It all seems so nice and cosy until you consider what these people have done. The cost of this catastrophic failure to provide any appropriate services for pwME. The research that hasnt happened because we have perfectly...

Yes if anyone knows of any other lupus researchers (than the kings people) who are any good, perhaps letting them know about the Nov. 6 event might be an idea.

In her recent talk Michelle James lists OX40 as a PET tracer that is being investigated in ME. In my email I asked if it was her or someone else studying it but I haven't heard back yet. I know I've been a broken record about these tracers lately but it's an interesting connection!

I've now emailed her. Hopefully I hear back. I find this whole tracer business so facinating!