Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Jan

Jan

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charles shepherd said:
'Suspected neurological conditions'

Funny old world…

The MEA has just been invited by NICE to register as a stakeholder in the guideline development process for 'suspected neurological conditions'

Having been asked I must assume that NICE regard ME/CFS as a 'supected neurological condition' !

CS
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If NICE are beginning to view ME as a 'suspected neurological condition' can't the MEA and others appeal against the use of the 'experts' being consulted by NICE for the guidelines? I imagine all the so called experts are psych based, plus EC. I know we are waiting for FOI request to reveal who they are, but can an appeal not be made?

Can we also not appeal against them on the grounds that (I suspect) none of their 'experts' have an interest in the physical nature of ME nor study any biological data. These 'experts' are self proclaimed experts and the majority of patients do not recognzie them as such. Nobody yet knows for sure what ME is, so how do they class these people as the 'experts'?

I am a bit wooly headed so apologies if not very clear.
 
B

Barry53

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Jan said:
These 'experts' are self proclaimed experts and the majority of patients do not recognzie them as such. Nobody yet knows for sure what ME is, so how do they class these people as the 'experts'?
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Presumably the conventional route by which medical professionals are deemed to become experts in their field, is by a combination of accredited education, proven track record experience, and maybe also credible independently validated research. Being as it is now blindingly obvious conventional ME "expertise" comprises none of these, the whole notion of what qualifies someone to be an ME "expert" should be formally re-assessed. Self-proclamation isn't really the most reassuring route.
 
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arewenearlythereyet

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Barry53 said:
Presumably the conventional route by which medical professionals are deemed to become experts in their field, is by a combination of accredited education, proven track record experience, and maybe also credible independently validated research. Being as it is now blindingly obvious conventional ME "expertise" comprises none of these, the whole notion of what qualifies someone to be an ME "expert" should be formally re-assessed. Self-proclamation isn't really the most reassuring route.
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I think being an ME expert is as easy as being a nutritionalist nowadays. You used to have to have a biology and food science degree and then have specialist experience to be a nutritionalist...now you see people labelling themselves such just because they've paid £200 for some online course and "eat healthily". I guess ME expertise is the same. Disreputable people will always gravitate to the complicated ...it helps weave their web of confusion and deceit.
 
C

charles shepherd

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The MEA petition will remain open till Monday:

https://www.change.org/p/petition-t...tter_responsive&utm_term=recruit_notification

It would be really great if we could hit 15,000 signatures by Monday morning

As far as I can see from a quick google search, this is the largest ever patient petition that has ever been presented to NICE - so it cannot just be ignored

I can then forward this news to Sir Andrew Dillon, Chief Executive at NICE!

CS
 
Countrygirl

Countrygirl

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charles shepherd said:
The MEA petition will remain open till Monday:

https://www.change.org/p/petition-t...tter_responsive&utm_term=recruit_notification

It would be really great if we could hit 15,000 signatures by Monday morning

As far as I can see from a quick google search, this is the largest ever patient petition that has ever been presented to NICE - so it cannot just be ignored

I can then forward this news to Sir Andrew Dillon, Chief Executive at NICE!

CS
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That is great, so let's try to break the 15 000 barrier!

HOWEVER, the heading of the thread will now deter people from voting and we need to change the date.

@Kina @Sushi

Please could you change the title of the thread and state that the closing date is now Monday.

Thank you!!
 
Countrygirl

Countrygirl

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This new thread is very relevant. Perhaps someone could use it for comment on the petition???


http://forums.phoenixrising.me/inde...-workwell-review-on-getset.52938/#post-878036


Todd Davenport of the University of the Pacific and consultant with Workwell Foundation, has published a review of the GETSET study. Slams them for bad science.
http://www.workwellfoundation.org/wp-content/uploads/2017/07/GETSET-Trial-in-MECFS-L1.pdf

"All the things that made me uneasy as a physical therapist about the PACE trial are back, now in the form of a study involving a slick self-help guide. It’s the same confirmation bias of telling folks to move in the context of a graded exercise program, and then having them parrot back the study hypothesis on standardized questionnaires. It’s the same absence of objective activity measures that result in the same self-fulfilling prophecy of telling people to move more, and then declaring victory when some of them are actually able to do it. It’s the same disregard for foundational scientific evidence of aerobic system compromise, immune activation, and other forms of organic pathophysiology in favor of a behavioral approach to ‘tell the tired people to move more.’"
 
C

charles shepherd

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