Apart from this Twitter poll being ridiculous, I thought he actually referred to another question he tweeted -- have to find that one now.
Edit:
It was a question about what to offer pwME if not GET and CBT ("constructive answers please!") Can't find it now.
Edit 2: Found it -- posted here.
https://twitter.com/drphilhammond/status/1429698085425459202
This is so disingenuous!
Read the NICE guidelines and what pwME suggested in their responses as stakeholders
Don't take what individuals respond on your Twitter thread as in any way representative for pwME.
https://twitter.com/drphilhammond/status/1429540281091858434
I'll try to respond to the second part of the question.
As far as I'm aware there is no evidence that fatigue associated with different illnesses generally is the same type of fatigue or has the same cause or will respond to a...
Could be that the S and K society doesn't feel represented by the BACME board's position so only shows the part of a text we don't know for which purpose it was created and to whom it was addressed.
I realize there are issues with BACME too, but I think we don't know their position on the final...
Thanks again, Dx Revision Watch.
I wonder how that number relates to the patient population of the region and the members of other charities?
Given that not every pwME and carer living in that region will be members of that charity, but of another or none, how do the numbers add up?
I guess...
I thought I'll leave this suggestion here in case people will find time and energy to work on this someday.
Obviously, to discuss this further will have to wait until forum members' and staff's workload caused by the delayed release of the new NICE guideline will have decreased.
Anyway, here...
To be added to the arguments about harm:
McPhee G, Baldwin A, Kindlon T, Hughes BM. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. Journal of Health Psychology...
Long Covid and chronic fatigue — your questions answered | News | The Times (paywalled)
Wednesday August 18 2021, 3.00pm BST, The Times
https://www.thetimes.co.uk/article/long-covid-and-chronic-fatigue-your-questions-answered-qpv3xrwrx
Submit a question in advance and come back on Friday...
Thank you to all who are involved with EMEC and the work on the fact sheets.
The EMEC fact sheets on ME seem excellent to me -- both the short and long version are succinct, the graphics in the short versions are good and the long version well referenced. (I remember there are other very good...
From the European ME Coalition's (EMEC) factsheet:
Is there a treatment or cure?
There are no Food and Drug Administration (FDA) or European Medicines Agency (EMA)
approved treatments for ME/CFS. (17,18) In Europe, ME/CFS patients are sometimes offered
cognitive-behavioral therapy (CBT) or...
Tom Kindlon (Twitter) :
"[Thread] Dr Alastair Miller recently made the attached claim.
The results of English #MECFS rehab clinics show recovery was rare & on average people worked less after attending the services https://t.co/3ALYHDDVIb See here https://t.co/81wpJBbI5x or this thread...
I haven't read the article yet but good to see that others like it.
It seems to not confuse the portray of a patient with presenting facts about an illness -- so that the portrayed person is not presented as a cases study. Is that impression right?
Thanks Graham.
That's included in @Brian Hughes ' Twitter thread:
If anyone who is on Twitter could generate a PDF and post it here that would be helpful.
(The thread unroll tool seems to offer a function to do this if you have a Twitter account)
@Lucibee @rvallee @Dx Revision Watch
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