Except that all research involving patients is already under patient control in the form of informed consent. I think the idea is just to ensure...
I can see that getting a set of standards together that can be agreed on by a good range of ME/CFS-specific charitable funders might be a nice...
Yes but that is an exceptionally bad paper and not one from the Biobank I think! I doubt the steering group would have approved sending out...
You have a point there but there is a valid reason for being against the psychosomatic theory. It was the one thing that PACE disproved...
I think the argument is a bit back to front here. From my perspective no researcher worth their salt should set up a project without clear...
Indeed. My point was very much a politically driven one!
Promoting is different from recruiting. DecodeME was a bit unusual in that every possible route was used to try and attract lots of people. I had...
If the situation is anything like rheumatoid and osteoarthritis I suspect it is not so much that T2 becomes T1 as that gradual onset T1 in an...
This is one thing that I think could be shouted from the rooftops. It should be a matter of law. Not specific to ME/CFS of course but no harm in...
I actually think the recruitment may have been a huge problem. Things are complicated but in a sense their argument that the problem is 'effort...
I am not very keen on the idea, other than simply saying that ethical research is that which has good enough methodology to provide useful answers...
Agreed. But picking apart bad arguments can be a very useful exercise while you are waiting for a breakthrough. Many many times I have engaged in...
I fear that is over-generous. If during acute Covid someone gets lung damage they can be treated as someone recovering from pneumonia. I doubt...
I am afraid that this is all too biopsychosocial. It deliberately mixes up biology and psychology exactly as before. It would be nice to use it to...
I agree. If it has an effect worth the risk 20 in each group would be enough to show it.
The real problems putting rehabilitation before research that shows it is any use.
Thanks, I had forgotten we had news of it in February. But the email I received today at least gives me a justification for flagging it up at the...
I thought it had a poetic touch, even if it wasn't meant to!!
Merged thread I have received a message indicating that a new professional organisation is being set up (linked to BACME) for post Covid and...
I think that is exactly right. It is quite hard to find a clear way of expressing one's intuitive sense of 'no way' about this but that is a good...
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