NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

I think there is a difference between giving weigh to patient's experiences and counting up votes.

Weight should not be given to patient's own experiences of being treated, just as it should not be given to doctors' and therapists' experiences of treating people. The very most that should be done with these experiences is use them to help make a vlid interpretation of evidence from studies.

All weight should be put on adequately controlled observations from published studies, and it should make no difference who raises comments about these studies in discussion. I would hope that once a proposal is made for a recommendation it should be put to a vote where everyone has equal weight. Moreover, those with a direct interest in the content of the proposal should probably abstain.

 

https://bit.ly/2P1ujrE

The full list is up now


GP Training: Medically Unexplained Symptoms (MUS)

An exciting training opportunity will be taking place on 15 and 16 October as part of a joint venture between University of Northumbria and the Centre of Academic Primary Care at the University of Aberdeen. Venue is to be confirmed but will be Newcastle, close to the city centre. This is a free, evidence based training for GPs giving them skills to deal with MUS. See link below for research background.

http://bmjopen.bmj.com/content/2/1/e000513.full

The training will comprise 1.5 days in October with one half day follow up, date to be arranged with group. All training can be counted for CPD. It will share recent knowledge about the biological and psychological processes involved in MUS; describe skills for recognising MUS; teach ways of explaining MUS to patients in a manner which can lead to constructive action. The ultimate aim is to improve GPs skills in the management of patients with MUS in a primary care setting.

The training will be delivered by Dr Chris Burton, senior lecturer in Primary Care at the University of Aberdeen and by Dr Vincent Deary, Senior Lecturer in Psychology at the University of Northumbria. Dr Burton researches recently edited “The ABC of Medically Unexplained Symptoms�; Dr Deary has been researching and treating MUS for many years and contributed chapters to the ABC book.

If this is the Chris burton I think we can all do a collective shudder. Tbh things are so bad I don’t know if patients should boycott this immediately because it’s flashing red for warning.

 

Alan Stanton might be the paediatrician mentioned here.

http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt

This was nearly twenty years ago so things might have changed but then he was in favour of psychiatrists and rehabilitation for children

 

Was Gabrielle MUrphy still chair of BACME in March, when Per Fink spoke at their Annual Conference?

 

Who exactly would be left to vote from this committee then? If most of them are making a living from BPS crap do you think they will abstain from votes on removing CBT and GET?

The whole thing is just a joke, a BPS whitewash. Evidence is irrelevant in this process the whole thing is stacked to make the outcome even worse than it is now. There's no way people on the BPS crowd wont bring forward stuff on LP etc especially as its "published evidence". By the time 2022 comes around they will probably have pumped out more shit on more voodoo nonsense. Its just pointless NICE pretending to acknowledge the need for this "update" and then ignoring the very fact that the reason the current guidelines are so controversial is that they don't have real evidence for the treatments.

The BPS are going to have a party filling up all the available time talking crap about central sensitisation and the LP etc. Remember since the last review PACE has been published so they will even use PACE as published evidence for CBT and GET working as well as if Cochrane shit their pants on the Larun issue they will claim the treatments have been scrutinized more than any other in history.

The Lancet has no issue with PACE so it still stands.

The basic premise will be CBT and GET works and all the published evidence says so lets look at what else works in terms of self help dvds and NLP.

We really need to contact NICE now and make a serious complaint.

 

Not happy that Holgate still chairs CMRC - he signed this letter. How come he's still in charge at CMRC? He should resign.

This may be a bit off topic for this thread, but after dental visit in pouring rain I can't work out where to put it.

(Apologies to Moderators if you need to move this)

 

ME Research UK seem to consider this the final list of appointees, not sure what they know more than I as I still haven't had any communication from NICE regarding the committee (I am the point of contact with NICE in regard to S4ME being a stakeholder).

Code:

https://www.facebook.com/MEResearchUK/posts/2154470671264845

 

Regardless of which direction the guidelines go, is it possible to push forward the need for patients to report harm done as a result of whatever treatment they end up recommending?

Even in the (likely, frankly) worst case scenario that politics overrule science and they mostly keep the current guidelines intact with symbolic changes, that would at least provide records of this harm. That will be important in the future. Right now they are still arguing that no harm recorded (because it is not possible) means no harm done.

If they are so confident that harm cannot occur (as they claim their research has done), they should not oppose. Which they will. Because they know.

 

I feel sick about this. I kept saying, during the time when people were pressing for the guideline to be reviewed that doing it now means we'd likely end up with something even worse. I just cannot see how it can go any other way with the people they've chosen

ETA: that not meant to sound like 'i told you so' at all, just how distressing it is when my fears appear to be materialising

 

In the UK they would need to be very careful. Children with ME aside, making complaints could easily get you referred to a MUS clinic (if you hadn't been already). It might affect what they out on your records, if it becomes a psych diagnosis then that will follow you forever and colour every relationship you have with every doctor you see in the future.

In addition, the way IAPT will be set up with their employment advisors wanting access to medical notes there could very well be consequences in terms of the benefits and state sanctions.

In terms of the individuals facing the system, it is truly David vs Goliath.

 

We need some good biomedical findings to be published. It won't solve all the problems but it would help.

 

I think we also have to think about them renaming it to Neurological Functional Disorder. They drew up guidelines earlier this year. They have changed the GP listing to neurological and they have Fabricating and Inducing Illness lined up there also.

 

Fortunately America has broken free of the system designed it seems to keep us locked into

“theres no evidence except for BPS treatment, something had to be done so BPS treatment is all that’s offered, the only people In The field are pro BPS lot who fill journals and media with BPS stuff, the overwhelming perception of the illness is as BPS , on top of this there’s a harmful militant harassment narrative against anyone challenging status quo, biomedical researchers aren’t interested, the state funders aren’t interested in intervening to promote biomedical research, no research is done , there’s no evidence except for bps treatment”

Cycle that we have been locked in with deadly effect.

The changes in the USA probably weren’t expected to happen for another ten years but a chink in the armour has emerged because, as the BPS lot say, ironically about us, a development somewhere in the set up can bring positive changes elsewhere, in this case it will be like a house of cards. If biomedical research happens they can’t maintain the current approach. If we were a more active, radical patient lobby we probably could have forced change by now, if we were able to turn CFS into a PEM based physical disease it could bring change. Everything seems locked against us so no card can fall but research is slightly happening so it will , fortunately for NICE probably not in time for this guideline to be anything other than a slightly modified version of the former.

I see NICE this time offering essentially status quo with some patient appeasing accommodation to stop GET being universally promoted and better medical care and support offered, which would please some. Whether it’s worth trying to make it anything more or if that’s an impossible task I don’t know.

 

Dr shepherd is saying there are still important posts to fill on the NICE committee

 

I have no idea of what goes on behind the scenes here and I am struggling a bit to keep up. With the deck seeming to be stacked so heavily against us I wonder if we should make our concerns known by way of open letter, signed in petition manner.

It might not do much this time round, but in the future might show that NICE were made aware of patient concerns and that they don't necessarily have patient support.

It strikes me that most of the time NICE are used to patients lobbying for something....a new drug to lengthen the lives of the terminally ill, an experimental treatment as a last ditch attempt to save lives. Is there any other example of patients lobbying NICE to stop a treatment? A bit late in the day perhaps, but could we somehow use this to our advantage?

If the process is primarily designed to filter out treatments that patients want and are not proven to be (cost) effective then is that process even fit for purpose here?

 

Do you have a link for that, please?

 

It’s on a thread on Facebook. End comment of first thread

 

Sorry, I'm not able to see it (possibly because I'm not on FB!). Did he give any more detail? I'm a bit confused because I thought that all the positions were filled now.

 

No more detail. He did say he can’t comment on the panel as he’s applied to be a professional

 

One of the key factors will be how well informed the patient reps are at analyzing research and how practiced they are at conveying the problems with the research. Probably one of those things which gets easier with practice. Many of the professionals will be used to making such points, and obfuscating when other people raise such issues they don't want highlighted. I imagine several of them have been on committees developing guidelines for other diseases so they will have those advantages. I know we have some capable patients involved though, probably more so than in many other diseases.