In your opinion, what has changed, if anything, in ME/CFS research in the last 10 years? If it has, what do you think was the catalyst?

[SNT Gatchaman]

You have summoned Michael Caine…

The original
The pretenders

 

[V.R.T.]

I would also not be surprised when the truth is finally revealed that we find some clues about where to look had been sitting in older papers for some time, possibly decades, due to a lack of insight and boldness to grasp their relevance and allocate the required resources to chase them up properly at the time.

If this buspirone challenge stuff replicates we may have already found a clue like this!

 

[Rick Sanchez]

I'm trying to find the right way to put it, and the best I can come up is that despite the massive changes that Long Covid should have brought, there has been no visible change at all. About the biggest difference is that the medical profession has aggressively resisted changing anything.

This is an area where I will eat the humble pie and admit I was wrong. I thought there was genuinely no way that all the money being put into Long Covid would somehow amount to nothing. But to me at least, it actually does look that way. A billion spent so we can conclude that LDN or computer games don`t treat the ill-defined long covid groups....

On a more positive note, knowing a lot of people who work in pharma the conversation has completed changed with regards to post-viral illness. Everyone knows what it is. No need to sound like a lunatic conspiracy theorist when discussing MECFS anymore.

But like millions dead and disabled... and this is all that came off it?

Lastly, I will say that 10 years ago, with the state of MECFS, I expected to never get better, ever. The past two years I´ve actually made changes to my life because I expect there to be a treatment within my lifetime if I can just stay alive long enough.

 

[V.R.T.]

This is an area where I will eat the humble pie and admit I was wrong. I thought there was genuinely no way that all the money being put into Long Covid would somehow amount to nothing. But to me at least, it actually does look that way. A billion spent so we can conclude that LDN or computer games don`t treat the ill-defined long covid groups....

I agree, watching that money be completely wasted by people who had no idea what they were doing and no care to do things correctly was absolutely agonising. They could have subgrouped people according to whether they have PEM, POTS etc and done a massive GWAS and WGS and still have had a massive chunk of change to follow up the leads from that. Even the treatment trials they've done are either BPS nonsense or low impact drugs following biobabble memes. The only half decent thing they did with a billion and a half dollars was expand the Baricitinib trial.

millions dead and disabled... and this is all that came off it?

It's rage inducing to think about what could have been if covid and long covid had been treated sensibly and rationally by governments. Instead of trying to mind wipe the entire world through propaganda and denialism in 2022/23.