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New Times article on NICE (mostly good)

aaron_c

Senior Member
Messages
691
I can't seem to comment. Is anyone else having this issue? Perhaps only paying customers can comment?
 
I can't seem to comment. Is anyone else having this issue? Perhaps only paying customers can comment?
Try reloading the page. I'm registered with the Times but not as a paying customer and initially I didn't have a comment box available to me, I clicked through to read their community guidelines and after using my browsers back button to return to the article the comment box was there, so it might be that a reload will help.

ETA: I have successfully commented on the article.
 
Last edited:
Messages
2,158
If you do want to comment on the article by registering but not paying be careful - you are only allowed 2 article accesses a week. I made the mistake of trying to go back to the same article later - this counts as the 2nd article, and the guidelines you have to read before commenting seem to count as a third, so I was locked out.
 
If you do want to comment on the article by registering but not paying be careful - you are only allowed 2 article accesses a week. I made the mistake of trying to go back to the same article later - this counts as the 2nd article, and the guidelines you have to read before commenting seem to count as a third, so I was locked out.
You aren't allowed back in to view something you have viewed already?
 

Hajnalka

Senior Member
Messages
910
Location
Germany
I was a bit :( to see that the NICE recommendations might not be changed til 2020, if they are changed.
Wow, that's a real bummer! Had no idea it could take that long! Just wrote a hopeful info for a German ME newsletter that the NICE guideline update might help us to apply pressure to get our guideline updated too. Is that timeframe normal? I can't imagine that people with other diseases are told to wait for over 2 years for updated treatment recommendations that do no harm ("In the meantime just carry on taking this toxic drug that makes you bedridden").
 

Daisymay

Senior Member
Messages
754
Well if it's to take that long, in the interim they really need to withdraw them completely or post a HUGE caveat and inform ALL doctors, physios etc. if not then they are continuing to put patients at risk and completely failing to get fully informed consent from patients, which is necessary in law. Plus they'd be in breach of ethical issues as brought up by the American professor whose name I'm sorry I can't remember, but who collaborated with Forward ME.
 

Solstice

Senior Member
Messages
641
Well if it's to take that long, in the interim they really need to withdraw them completely or post a HUGE caveat and inform ALL doctors, physios etc. if not then they are continuing to put patients at risk and completely failing to get fully informed consent from patients, which is necessary in law. Plus they'd be in breach of ethical issues as brought up by the American professor whose name I'm sorry I can't remember, but who collaborated with Forward ME.

Lubet?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Well if it's to take that long, in the interim they really need to withdraw them completely or post a HUGE caveat and inform ALL doctors, physios etc.
It has never been the case that bureaucracy does anything about ME in a timely fashion, at least so far. They haven't even got the name right for nearly three decades!

How long did it take for the CDC to stop recommending CBT/GET? Have they done that even now, as I think the doctor education material might still not be updated? The Mayo clinic had a chance to do so recently and failed.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
That kind of delay might mean the Rituximab results, and maybe some more Cyclophosphamide results, will be available.
True. But until we have breakthroughs (like Ritux, Cyclo or something else) or a biomarker, I was rather hoping for some very basic stuff that would already be revolutionary for us, like "Treat sleep, pain and POTS. Don't reject testing and referrals. PEM is real, don't make your patient with ME overexert. CBT is not a cure for ME, it can only be used as support to adapt to a new life."

And it'll take some more years to get the guidelines in other countries to follow up at least some of the changes in the English guideline, that would be more like 5 years from now. Had hoped for faster support by guidelines that all pwme can at least get basic treatment and don't need to luck out with their GP to be taken seriously and not be harmed by CBT/GET.