Discussion in 'General ME/CFS News' started by BurnA, Oct 26, 2017.
Ok, I hope this is recent news.
It looks very different from what I would expect but I can only see the summary
Looks a lot better than NICE guidelines in that it specifies PEM, talks of biological basis and emphasises need to not overtax energy.
I'm not keen on this part:
'a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.'
NO. I want a good physician who can make a clear diagnosis of ME and coexisting conditions and treat appropriately. And good advice on pacing using actometers, heart rate etc. I don't think that needs a 'team of therapists'. And 'improve functional capacity' sounds scarily like GET.
That seems to be pandering to the BPS people. I do think an occupational therapist can be useful in terms of providing adaptations and equipment to help make life easier.
The OT I saw from the local ME service didn't offer any of that. When I asked about equipment etc. she said something like 'you have to see the uniformed OT's for that' - she only did the advice stuff - pacing relaxation etc. Different service. Never been offered it.
Here's an (encouraging) extract:
"outmoded Oxford criteria"
Now that is a win.
Is the excellent work by Tom Kindlon in his Harms Reporting paper , and by those posting formal critiques of the Cochrane review on exercise for CFS , among the references cited in that section?
Asking as somebody without a full copy of the BMJ document.
1. http://www.ncf-net.org/library/Reporting of Harms.pdf
Is there any way we can access the full version?
And is there any information on whether doctors actually read the BMJ best practice guides in preference to the NICE guidelines?
And does anyone know who wrote it?
Preview on Facebook:
James was preparing this around eighteen months ago and he had a session on it at IiME colloquium where he got input from the entire international research community. James takes a very measured responsible view of things and insisted that if people wanted change they needed to provide good arguments. Presumably it has taken some time for this to come through to being published.
It seems that James got invited to do this rather by chance because he had sent in a comment on some previous document. But he probably got the job because if people asked around they are likely to have found solid support. He is perhaps the most intelligent and broad-angled thinker amongst the established ME research community. He does not overstate his case. Peter White would have found it hard to cry foul.
This looks like more, solid, progress. (pedantic commas inserted)
So is this a sign that Peter White is backing down on PACE and the whole BPS thing and acknowledging that it included too many people with mental health issues and mild fatigue, not ME/CFS?
That always looked like a possible escape route. Will he now say: 'we weren't studying moderate to severe ME/CFS, we were studying mild chronic fatigue.' I wish he would come out and say it publicly.
I see he's still advising government and insurance companies. I wonder whether he's acknowledged this change of direction to them.
Has anyone managed to get access to the whole document. I don't want to pay for a subscription to the BMJ in order to read it!
And can it be submitted as evidence to the NICE review and to Cochrane?
I'd be curious to see the comments from the reviewers. I doubt he was happy with the statements indicating all of his Oxford research is useless crap
The link I posted takes you to a preview of the whole 79 pages.
If that's Facebook, why doesn't it know that I'm already logged into Facebook?
Strange, it's asking me to log in now too...
This seems to work
Publishing patients are having an impact :
RIP Oxford criteria
More on GET
(Bold and paragraph breaks are mine).
Separate names with a comma.