rvallee
Senior Member (Voting Rights)
So because they can't possibly acknowledge having failed for decades in their mismanagement of ME, they decide to basically fail yet again by pretending it simply does not exist or has nothing to do with. Because this will hurt the LC community just as much as us.NICE have released their "COVID-19 rapid guideline: managing the long-term effects of COVID-19", see https://www.nice.org.uk/guidance/ng188
We were distinctly underwhelmed by their original draft, and on a quick scan of this, not much has changed. It would seem they are determined to steer clear of acknowledging any possible connection with any other post-viral syndrome and/or ME/CFS.
Text of our submission is integrated into the same document as everybody else who commented on the draft, so for ease of reading I've attached a copy of our submission (you will need to be a forum member to access it).
The panel list and declaration of interest, https://www.nice.org.uk/guidance/ng188/documents/register-of-interests, reveals that our friend Trudie Chalder is one of the 'experts'.
I can't emphasize enough how significant the ME advice has been for long haulers. Everything from the basic vocabulary to the framing to the guidance about rest and pacing, all of this has been a lifeline to so many. And here they can't even acknowledge this basic advice, even as meanwhile medicine has had nothing to offer but pissing on their faces with the possibly worst advice.
Great work, folks. This is a great example of how to make a decision that is the worst case for all parties. Nobody's happy or well-serviced. That's just brilliant.