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

Jonathan Edwards said:
Yes, I appreciate that there are safety measures for foods as foods. But as far as I know there is no regulation of doctors, or anyone else, recommending foodstuffs to treat diseases. So I could recommend parsnip juice for rheumatoid arthritis without ever having established that there was not some serious adverse reaction that occurred in people with RA to parsnips. There are probably very few examples of this being a problem but I wonder about recommendations for diets for diabetes and suchlike. Was there ever a requirement to prove they were safe. My guess is that they were recommended on theoretical grounds that may have proved wrong.
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Yes you are right, but there is legislation to refer to in terms of permitted health claims for product, so if you were to claim that parsnip juice were a cure for arthritis, a complaint could result in forcing you to withdraw your misleading practices and claims. Ive not heard of it applied for practioners but this has happened for endorsed products that make outlandish claims. The issue seems to be one of a reluctance for establishing proper governance in the medical profession generally and a reluctance for policing doctors making misleading and false claims.

If you look at the permitted claims, there are a couple for healthy cartridge (vitamin c) and a few for normal healthy bone growth (various minerals) but nothing for arthritis, so if someone were to decide to prosecute you for misleading claims they could refer to this legislation. It would be then up to you to prove that your parsnip juice had the vitamin c at the right levels for the dose you were suggesting (via nutritional analysis from a registered laboratory using validated test methods) but you would probably lose since none of these relate to rheumatoid arthritis?

It makes you wonder why there aren’t more prosecutions if the legislation is there to be applied? My personal dislike is when doctors endorse a particular lifestyle diet (like the action on sugar guy). Queen Mary’s seem to have a few quacking nutritionalosts that like the sound of their own voice too ...it would be great to slap a lawsuit on these people to force them to be less misleading/self publicising.

But I take your point :)
 
obeat said:
Sharp has already called for more funding to figure out why GET works so well in trials
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The answer to that is for free! They have already answered it. It's because under their kind of trial conditions, they can and do bias their results atrociously. And it doesn't work in real life. There - no need for more funding.

ETA: I see I'm far from the first here to solve this problem for MS :)
 
JaimeS said:
Quite a few studies on specific diets -- and they did measure adverse effects.

The ketogenic diet for epilepsy is a good example.
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Hmm...I’m not so sure about that...specifically on the long term harms bit? Ketogenic diets may have been used for a long time but I don’t think there is a lot known about the specific action involved, certainly not until very recently. What appears to have happened is that doctors have used it in the past (long before they knew what they were doing) and been allowed to ‘prescribe it” without knowing it’s effect or side effect ever since. It has recently been “popularised” due to lifestyle diets etc and so people assume there is solid research to back it up as a treatment. It certainly seems to have been quoted out of context by many from what I’ve seen.

One thing I doubt very much is whether the long term health effects of a ketogenic diet has been studied for heart, bowel and liver health for epileptics taking the prescribed diet say for 30 years ....a bit like the drugs they prescribe...after all they should be happy with less fits shouldn’t they? ..and their reduced lifespan due to heart attack or stroke...well let’s not talk about that...after all I’m a neurologist not a cardiologist?

If we are being purist we should say we already know what sort of diet is healthy due to the weight of evidence suggesting a varied “balanced” diet with plenty of fibre from whole grains and vegetables. So there must be a downside that they should give warnings for from deviating away from this to offset the benefit that should be stated clearly before commencing the “treatment”. But they don’t seem to do this consistently for anticonvulsent drugs, so why would they do it for a diet?

I’m afraid the field of neurology may have just as many sleights of hand and research sloppiness in it as the BPS set. I often find it ironic that as a community we site a neurologically defined condition (with very little evidence) as our desired position to get away from the psychological diagnosis/treatment.

I fear if we pursue this though, all we may achieve treatment-wise is a short reprieve in the frying pan before we are quickly tossed back in the fire again.

Sorry for the doom and gloom ...I have an ultra-low opinion of neurologists
 
Countess of Mar was going to pursue with MHRA about adding psychological therapies to the yellow card system. At present you have to write to the therapist or their boss. She said that records of written complaints are very patchy, so accurate numbers are not available. Bureaucracy takes forever to change.
 
arewenearlythereyet said:
Ketogenic diets may have been used for a long time but I don’t think there is a lot known about the specific action involved, certainly not until very recently.
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No, but harms were reported. That's what I was referencing.

arewenearlythereyet said:
What appears to have happened is that doctors have used it in the past (long before they knew what they were doing) and been allowed to ‘prescribe it” without knowing it’s effect or side effect ever since.
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Johns Hopkins did a long-term study on this and formed keto-lite, also called Atkins. I think they were hoping for broader applicability, which was a mistake.
 
Sly Saint said:
According to the current NICE guidelines re setting up the 2007 version:

"The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification.

Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME."


Is this (ie recognition of ME/CFS as neurological until/unless future biomedical research proves otherwise) something that should be a pre-requisite in the new guidelines?

If so, then surely they should filter out those committee members who profoundly disagree?
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In a reply to Bridget Phillipson MP (re letter from Malcolm Hooper)
Lord O’Shaughnessy confirms that the Dept of Health & Social Care does accept the WHO classification of ME/CFS:

“I can confirm that we accept the World Health Organization’s classification of CFS/ME as
a neurological condition of unknown origin, as previously stated in Hansard, and not a
psychological condition”.

as Margaret Williams points out:

"This is surely more proof that NICE (whose sponsor is the Dept of Health & Social Care) is
mandated to accept the WHO classification (which NICE says is does NOT have to accept
because the Guideline Development Manual does not specifically tell them they should
accept it).
This is such a crucial time, so as many people as possible should write to their MP asking if
NICE can legally disregard its own sponsor’s mandatory requirement.
10 November 2018"

http://www.margaretwilliams.me/2018/hooper-to-phillipson.pdf
 
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Cock up or conspiracy?
Participate or boycott?
Many doctors, including some of our heroes are running scared and don't to shout too loud, trying to be reasonable. This is a war. Mild reason will not help us, though there is a place for it.
I think it's going to get very messy. Shame most of us so ill, we need to make a fuss.
Everything is recuperated, it's hard not to be paranoid, but there are always agendas.
You would really think big pharma would be looking at all this? Careful what we wish for as usual.
 
Sasha said:
Right at the end there, it says that there will be an opportunity to comment on the draft recommendations. I wasn't aware of that.

I wonder if there's precedence for changes being made at that stage?
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Here are most or all of the replies to comments last time.
I recall they didn't tend to alter things much based on comments from the ME charities, but did make some changes based on comments from services such as the Barts one led by Peter White.
 

Attachments

This round of letters were unsolicited by NICE the previous round was a consultation exercise and it is normal practice to publish the points made in consultations and responses to them although even then there were standard responses used in som cases where a point was made several times.

People may feel they’ve each been making different points by adapting the template but it is effectively a group response supposed by 2000 individuals. It is common practice to use standard replies. The key factor in influencing any action by NICE and the chair/deputy is the number of responses. They are now aware if they weren’t previously that there are many people keeping a close eye on them and expecting that COIs will be handled appropriately within the group ie to NICEs own published standards,
 

Attachments

An update from Dr Shepherd on the MEA Facebook page this afternoon:

VERY BRIEF NICE GUIDELINE UPDATE

COMMITTEE MEMBERSHIP

I have just been speaking to NICE about a number of matters and have been informed that an updated list of members of the guideline committee has been published today (November 23rd) on the NICE website:

https://www.nice.org.uk/…/g…/documents/committee-member-list

FORWARD ME GROUP OF CHARITIES

Charity and health professional members of the Forward ME Group - which include 3 members of the NICE guideline committee: myself, Dr William Weir and Tony Crouch - met on Tuesday this week with the Countess of Mar and Carol Monaghan MP

We had a very full agenda - the main item being a presentation from the parliamentary and health services ombudsman - which included a discussion on developments re the NICE guideline

There will soon be an important announcement from the group regarding the collection of patient evidence that will be submitted to NICE

HOUSE OF COMMONS CHAMBER DEBATE ON ME/CFS

Carol Monaghan MP reported that she had been successful with her application for a full chamber debate on ME/CFS in the House of Commons.

No date has yet been arranged for the debate - partly due to all the problems with the parliamentary timetable that are being created by BREXIT

The Minutes for this Forward ME group meeting are now being prepared

Dr Charles Shepherd

Hon Medical Adviser, MEA
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hinterland said:
What’s the difference between a co-opted member and regular member? Do their votes and opinions carry the same weight?
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Explained here, https://s4me.info/threads/nice-guid...s-now-been-published.6197/page-30#post-119876
Co-opted members may be included as additional members of a committee for 1 or more specific meetings. Co-opted members are part of the committee, join in discussion and contribute to formulating the recommendations. However, they are not full members, do not have voting rights and do not count towards the quorum.
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