You can apply to be on their Adoption and Impact Programme Reference Panels via the website and they have another section where they advertise vacancies on specific boards https://www.nice.org.uk/get-involved
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New Times article on NICE (mostly good)
- Thread starter Orla
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AndyPR
Senior Member
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Don't worry, the number of people who ignore me is quite a large number and includes my wife and our cat, so you won't have been alone.
BurnA
Senior Member
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Are you a Cochrane reviewer - is this a new development, did you have to explain that mental health was not your area of expertise?
slysaint
Senior Member
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Heard an interesting interview with Matthew Walker ( a Brit),
"
The shorter your sleep, the shorter your life: the new sleep science"
"he is the director of the Center for Human Sleep Science at the University of California, Berkeley, a research institute whose goal – possibly unachievable – is to understand everything about sleep’s impact on us, from birth to death, in sickness and health. No wonder, then, that people long for his counsel."
"When Walker talks about sleep he can’t, in all conscience, limit himself to whispering comforting nothings about camomile tea and warm baths. It’s his conviction that we are in the midst of a “catastrophic sleep-loss epidemic”, the consequences of which are far graver than any of us could imagine. This situation, he believes, is only likely to change if government gets involved."
sorry, the article is in the Guardian
https://www.theguardian.com/lifeand...ealth-worst-enemy-matthew-walker-why-we-sleep
Wonko
Senior Member
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.....but it seems so much longer.
Jonathan Edwards
"Gibberish"
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I was asked to review (or referee) a Cochrane Review. The fact that I was asked suggests that someone already in the system pointed them in my direction. Presumably they thought someone outside the area of mental health might be useful. They apologised for the fact that the Review was under mental health in fact.
BurnA
Senior Member
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Thanks, good to hear.
Maybe they are getting the message.
Wow that is really good news. I was just going to start reading up on the issues with Cochrane. Might do this anyway as there are some useful comments regarding the problems with the evidence from Tom and others.
snowathlete
Senior Member
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- UK
When I looked into this before, people have to apply to be on the committees.
https://www.nice.org.uk/get-involved/join-a-committee
There is a page on what the requirements are, which I cannot find at the moment. I would think you would meet the requirements though. I would suggest contacting NICE and asking if you can apply now, and if not then to ask them to register your interest so that you hear when they open the application process. In the past the makeup of the committees had all but guaranteed the outcome ahead of time.
So getting appropriate people on the committee, and the inappropriate people off it, is important. If there is anything I can do to help, I will be happy to.
slysaint
Senior Member
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Jonathan Edwards
"Gibberish"
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Worth knowing. My worry is that with most of these things in academia you have a snowball's chance in hell of getting appointed unless you have been invited to apply by someone already involved. It is a bit like being nominated to be elected as treasurer, but backwards. You have to be nominated but nobody ever nominates anyone unless that person has asked them to nominate them.
JohnM
Senior Member
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aka 'policy-based evidence making' by 'self-appointed' topic experts only too happy to put career advancement before the needs of patients .. a case of "I see said the blind man to his deaf wife .."?
Wishing everyone improved health and every happiness. John
sb4
Senior Member
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I somewhat agree with this but on the flip side, if CFS where to be seperated from ME I think it would be throwing these people under the bus.
I am pretty sure I don't have ME (post exertional malaise) but do have CFS/POTS. I do however think the diseases are heavily linked, just some are affected in different ways to others. So if ME where to get separated and recognized as a physical disease it's possible that CFS would be fair game for the psychs. So for my own selfish reasons I am sort of glad it is this way, if ME gets recognized as a physical disease then so does CFS.
arewenearlythereyet
Senior Member
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i would also just like to add that I get very disheartened to see infighting within the community over a name and that Sometimes this can feel like stigmatisation from within. This was one of the reasons I waited 2 years before joining PR....I didn't feel worthy enough, and was too weak to take a battering. I think the term CFS is like a red rag to some and is highly political, to others. ME as a label also has far more stigma associated with it (particularly in the UK)
I don't think much can be achieved by trying to prize the terms apart. I'm not sure there is any such thing as " pure me". This is all a matter of opinion and speculation until we have a better idea as to the cause and progression of the disease. To try and separate terms seems a waste of energy to me.
For instance, my OI was minimal when I was diagnosed in 2014 but I met all the criteria on the CCC. My OI is now a lot worse ....I have always had PEM...I didn't have sudden onset or a viral trigger....do I have ME or CFS? what did I have and is it different now? To some I am sure that I don't have " proper" ME. i am now comfortable with what I've got ...but I do find it sad when people go "off on one" over a name , particularly when ME doesn't really describe what we have any way.
I was diagnosed with CFS which means I can also use the alternative term ME in the UK. Part of the reason I don't use the term ME, is because I don't feel it has any more validity in the work place or with family or friends. I understand crawly et al will conflate fatigue because of the name, but I think they would do that regardless of the name until a biomarker is found and accepted anyway. For now I will just say I have CFS and if anybody attempts to separate them I will decide then what is best.
snowathlete
Senior Member
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Quite possibly, but perhaps more likely to get an invite if you register. I don't know. I do think the community needs to advocate for NICE to invite appropriate people.
If appropriate ppl don't register then it makes it more likely that NICE end up selecting inappropriate ppl for the committees, arguably even without intent to do so. I very much imagine the BPS crowd will be well organized in applying for these committees.
We probably need to identify a list of appropriate people in the UK, encourage them to register, and hold NICE to account for the makeup of the committee they select.
I wish there was a super-like button for this post.
We definitely need to ensure the next stage includes proper biomedical experts but given the 30 year psychobabble reign there are not many in the UK. There are still a few. But we may need NICE to go and get US experts for their Guideline Development Group.
We need to look into how to achieve the next stage of the process.
Esther12
Senior Member
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It could be that there's an awareness within NICE that they will need to look outside of their normal crowd for CFS?
It might help you understand the controversy about CFS if you realise that ME was a properly defined disease that was originally described in epidemics but then was seen as occurring sporadically as well. There was an ignorant grab by psychologists but many researchers were showing how wrong that was. It was an exciting time with a lot of interest in research and money was available. Then suddenly there was AIDS and all the money disappeared. We had a patient organisation, local groups and a common set of symptoms; we all knew what we were talking about.
Then, suddenly there was an epidemic in the US, the CDC renamed the disease CFS and, in the UK, a group of psychiatrists I had never heard of redefined the illness as CFS but not the CDC version!!!
It was like a military coup.
CFS did not describe the illness at Tahoe and it did not describe ME, it was invented for political reasons. It is not like rheumatoid arthritis or Lupus, something that was developed by examining patients and finding commonality.
I still feel anger that the American researchers let it happen and ignored the years of work done in the UK. ME was epidemic and associated with polio for goodness sake, not fatigue at all. It has taken about twenty five years for the fact that exercise intolerance is the main feature to be acknowledged in the US but we knew that in 1959.
Many people who have been told they have CFS actually have ME, but that is more luck than judgement in most cases. You may equally have Behcets disease, coeliac disease, lupus, fibromyalgia, even one poor woman who had mad cow disease. You could be suffering a post viral syndrome or just be working too hard, overtraining as an athlete, the list goes on.
CFS is NOT a disease, it is a dustbin diagnosis for when doctors don't want to do proper testing to find out what is wrong.
That does not mean that someone who has been told they have CFS is not ill. Simply being tired all the time, the least you can have and be diagnosed, is horrible. The BPS brigade have thrived on the misleading construct CFS. It lets them confuse the issue and they want to dump all diseases of unknown origin into a single category of MUPS.
If you have been diagnosed with CFS, I and I think most of us, feel you have been let down by the medical system and it would be good if you did not have ME since, as defined by Ramsay "it has an alarming propensity to become chronic". Much better if you have something that will resolve and we will not hold that against you. We have had some good advocates who were initially misdiagnosed.
But I can recognise my illness in the description of 1959 whereas I have never experienced 6 months of fatigue so never met any of the definitions of CFS therefore I have ME.
Good to see people thanking journalist who has done his research and not just repeating spoon fed SMC lines.