USA: National Institutes of Health (NIH) intramural Long Covid study with Avi Nath

Apologies if there is already a thread on this

 

Steroids and IVIG? Meh. So many people with ME tried those (me included) with no benefit. I guess maybe you could make the argument that perhaps if administered early into the illness they could have an effect on a subgroup of patients? Either way seems like a stab in the dark.

For me one of the mysteries of ME is how so many symptoms feel like they are inflammatory but steroids/IVIG don't do anything for it and in many cases make them worse.

 

Still waiting on anything published, other than a PEM survey, on the me/cfs study that started before covid-19 was around. Is it a Nath thing or NIH thing?

What a disaster. So they just halted it to slowly churn through post-covid and throw steriods and IVIG at 12 patients. I don't know if I should laugh or cry. At least it's moving a little faster.

This is very true.

 

I’d say if they had anything publication-worthy, we would have heard it by now.

 

The problem with calling a new disease where every test has shown it to be the same is you waste an awful lot of time trying the same thing and getting the same results. That is one way to blow a billion dollars, repeat all the research of the prior 40 years and do it 4 years instead. Science does have a replication issue so its good to do but I wouldn't call it urgent. The urgent need is to study ME/CFS as it develops from Covid infections, you need to track a large number of people and track a wide variety of things in the body and those that develop ME/CFS you get a glimpse as the process taking place. That was the entire point of the NIH programme, its the first moment its viable to study this and the window is closing. Can't help think the systemic prejudice around ME/CFS is the reason so much money and research has been wasted so far.