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Bad news to the MEA from NICE: no review considered necessary

lilpink

lilpink

Senior Member
Messages
988
Location
UK
Research 1st said:
It's best to be brave, send NICE a polite letter of inquiry but with the understanding you'll be taking legal action if they don't release WHO the review board is.
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I would like to think a patient charity might choose to follow this course. It is absurd that we don't know who is in judgement of us. This is literally a life and death struggle. There is no exaggeration in that assertion.
 
C

charles shepherd

Senior Member
Messages
2,239
lilpink said:
I would like to think a patient charity might choose to follow this course. It is absurd that we don't know who is in judgement of us. This is literally a life and death struggle. There is no exaggeration in that assertion.
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I have sent a 'polite letter of inquiry' to NICE from the MEA regarding the membership of the group that has been reviewing the evidence

A reply is eagerly awaited - but not yet received!

CS
 
Spindrome

Spindrome

Messages
41
lilpink said:
I've been discussing this issue with interested parties behind the scenes. One sensible suggestion was that the MEA, being a patient charity, might like to harness the experiences of patients and introduce a review facility much like NHS Choices in England. Thus people who have attended the clinics can provide a short written appraisal of that experience and also a star rating (usually one to fives stars is applicable) . Not only would this provide a very real and interactive overview of how patients feel the clinics have served them but it would also provide the MEA with an added database in terms of overall patient satisfaction of the clinics available. I can't imagine it would take much website expertise to set that up and it would be an invaluable resource especially for newcomers who can't be expected to get up to speed on all the shenanigans of ME politics.
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What a great Idea, there are probably off the shelf tools available that could capture that information. Like survey monkey have a cheap monthly subscription.

It would also be useful to capture lots of other information like how effective GET was, and if it made people worse after discharge etc etc. I have often wondered how many people have been made worse by GET after discharge And therefore not captured by the NHS questionnaire.

I don't know much about publication but Is there anyway to get this type of information/online survey results into a paper? Since NICE only seem to listen to published research.
 
dangermouse

dangermouse

Senior Member
Messages
430
Spindrome said:
It would also be useful to capture lots of other information like how effective GET was, and if it made people worse after discharge etc etc. I have often wondered how many people have been made worse by GET after discharge And therefore not captured by the NHS questionnaire.
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Good idea.
 
slysaint

slysaint

Senior Member
Messages
2,125
lilpink said:
NHS Choices in England
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I thought this was only for GP practices:
http://www.nhs.uk/Services/GP/ReviewsAndRatings/DefaultView.aspx?id=37154

but apparently it covers hospitals/clinics also:
http://www.nhs.uk/Services/hospitals/ReviewsAndRatings/DefaultView.aspx?id=3032

"
Anonymous gave Leeds & West Yorkshire CFS/ME Service at Newsam Centre a rating of 1 stars
I attended the Chronic Fatigue Clinic over a year ago.
Poor and unclear parking arrangements. Long way from to walk from bus stop. Receptionists not very friendly, not speaking clearly, not informative about where to wait, where to go and what is going on. Sometimes even rude. Not even happy to help about other queries like where toilets are, etc. The hospital is one of the most unsuitable venues for ME/CFS patients."

maybe if people were made more aware they can comment/ rate a particular service it would get used more and as I note the clinic/practice concerned seem to answer, a good way to tell them just what is wrong (or good) about their service.

@charles shepherd could the link be included on the MEA website for starters?

eta: have just been playing around with NHS choices site and the search engine is pretty poor.........found it almost impossible to find chronic fatigue syndrome services.
 
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charles shepherd

Senior Member
Messages
2,239
Membership of the development group that produced the 2007 NICE guideline on ME/CFS:

https://www.nice.org.uk/guidance/cg53/documents/guideline-development-group-members2

NB: We have no information at present about membership of the group that has just been reviewing the evidence for NICE

I have written to NICE to ask them to supply this information and am awaiting a response

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Spindrome

Spindrome

Messages
41
Would be interesting to know the patient representative experience of GET if they responded and pro GET its not really a true representation of the patient community. Can we ask for this information? I know that EC always brings along a patient to say how good the treatment is when she goes on TV.
 
Binkie4

Binkie4

Senior Member
Messages
644
Sorry. I am getting confused again.........

If the stakeholders are unable to persuade Nice that a review is necessary NOW, we won't need a guideline development group until the guidelines are eventually reviewed in ??, will we?

So our focus needs to be on who is in the expert group advising Nice, currently unknown? And what the stakeholders can do to influence them?


Have I got this right?
 
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