NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

[TiredSam]

The horse will be taken to water, I think we can be assured. The question is whether it will drink.

Until now the horse has been too easily distracted by the loud quacking of the ducks who seem to have taken over the village pond. Ideally the ducks should be removed as in such numbers they are a pest and a nuisance. Failing that, we have to educate the horse to accept the fact that although ducks will quack because that's what ducks do, they should not be allowed to prevent it from having a good drink, which is what it came to the pond for in the first place.

Bloody ducks.

 

[NelliePledge]

They need to think more imaginatively about patient input. This would involve not relying on 2 or 3 people who may or may not be able to participate at any given critical point in their timetable. A larger group maybe 10/12 people that could be involved using online collaboration tools video/voice conferencing document sharing for commenting. These are widely used in the world of work and should be brought in here. If NiCE need advice talk to the Government Digital Service. This is not rocket science.

ETA. Read slide now so they take on board broader patient input. They are said more severe patient group would have shorter meetings. Not flexible enough need to be clear it will be interacting remotely.

Face to face big set piece meetings have a role for getting things off the ground but aren’t essential, aren’t inclusive and very 20th century.

ETA. And for everyone who says ah but you get all the informal interaction in the margins of the meeting errr I raise you this forum Nothing on here is strictly formal anyway but if you want a quick off line chat you go off and do a conversation - end of

 

[arewenearlythereyet]

I agree. I think that examples of current noticeboards, patient info and questionnaires would be brilliant. I think we need to gather them before the CFS clinics are switched to MUS.

I don't have the tech skills/resources to do this, or the time at the moment. I would be very happy to contribute to helping ask for these on different FBs etc and with collating/reviewing results later in the year.

@Graham any ideas on this?

We could set up a separate thread to collect pictures and PDFs of documents. I don’t have the notice board for mine but have the questionnaire and leaflet from 2014...bit out of date but I’m sure they haven’t changed much. I’m sure with members here and Facebook we could collect quite a few?

 

[large donner]

My thanks to all who participated in the meeting.


I think this is precisely what will happen





Indeed.

I dont know why more people cant see that the position of "well such n such supplement/off label drug helps some people, so lets have it".... is simply the BPS argument in the opposite direction.
Whats good for the goose is good for the gander. Either we say 'strong evidence only' or we dont, we cant have it both ways. We simply cannot expect NICE to accept our "let us use these things because we dont have anything else" line, while dismissing that same line from the BPSers (- who after all carry much more weight & authority at the present time)... to me that is a ludicrous expectation, and an unfair one.

I appreciate that using 'strong evidence ONLY" approach may prevent some people getting things that might help, but it will definitely prevent people being harmed. First do no harm.
And honestly i'd happily sacrifice a little improvement (that may be mainly placebo anyway) to save vulnerable children being committed to psych wards/put in care/made permanently bedbound.

Lets stop the abuse first and foremost.

I think we should definitely point out to NICE that it would be ludicrous to take some anecdotal stuff about supplements or faith healing or homeopathy etc with zero evidence and make them part of the official guidelines so there's no reason to make CBT and GET the official treatments when the same is true of them.

We could actually use that argument to our advantage.

I do wonder if there is any published evidence on real pacing we could use however to shape the guidelines and not the APT from the PACE trial.

 

[Alena Lerari]

I agree. I think that examples of current noticeboards, patient info and questionnaires would be brilliant. I think we need to gather them before the CFS clinics are switched to MUS.

I don't have the tech skills/resources to do this, or the time at the moment. I would be very happy to contribute to helping ask for these on different FBs etc and with collating/reviewing results later in the year.

@Graham any ideas on this?

I think we could start by looking at websites. There is often so much rubbish on there that I wonder if they are actually being serious.
The Royal Free Hospital for example; hard to know where one starts on that. Promoting PACE, lumping depression and anxiety with CFS/ME and I especially ‘like’ the bit at the end, saying that “Evidence shows that patients who are committed to consistent therapy achieve better results.” (What evidence??)
Also, “Cognitive behaviour therapy identifies behavioural patterns that may be contributing to your chronic fatigue”.
It’s just so full of wisdom!
https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/

 

[TiredSam]

At the university hospital in Berlin they gave me a 4-page sheet of advice on supplements, symptom management etc that "some people have found helpful", with references to the original research. The Dr also wanted to talk to me about activity management and pacing, but I knew it all already. He then took 8 phials of blood samples for research, said there wasn't much they could do for me, shook me by the hand and sent me on my way. Perfect. It's do-able.

On the way out I walked past a water fountain. No ducks. Mind you, no horse either. And no water.

 

[Hoopoe]

There's still symptoms relief (pain an sleep mainly).

That's covered in the document. Along with a description of how patients are affected by the illness.

 

[NelliePledge]

So if there is a clinic that has a specialist medic who has been educated in what’s current known about ME based on biomedical research findings and experienced doctors knowledge. There doesn’t need to be a specific treatment in the guidelines. There needs to be proper comprehensive testing to rule out other issues. The doctor needs to be allowed to treat symptoms using available resources and their best judgment on individual patients needs which may be medications used in adjacent conditions. This doesn’t mean everyone would be getting random medications everyone on antivrals for eg as the specialist would have to be able to justify use of the medication in each case.
But it could mean if someone has bad muscle weakness they maybe have access to Mestinon. If they have problems with sleep they maybe have melatonin.

Or would strict evidence based requirement needed in order to exclude GET mean the specialist wouldn’t be able to use their judgment in this way?

 

[Sbag]

I agree. I think that examples of current noticeboards, patient info and questionnaires would be brilliant. I think we need to gather them before the CFS clinics are switched to MUS.

I don't have the tech skills/resources to do this, or the time at the moment. I would be very happy to contribute to helping ask for these on different FBs etc and with collating/reviewing results later in the year.

@Graham any ideas on this?

I dont mind collating things if you want to send them to me when you get them

 

[Sbag]

Until now the horse has been too easily distracted by the loud quacking of the ducks who seem to have taken over the village pond. Ideally the ducks should be removed as in such numbers they are a pest and a nuisance. Failing that, we have to educate the horse to accept the fact that although ducks will quack because that's what ducks do, they should not be allowed to prevent it from having a good drink, which is what it came to the pond for in the first place.

Bloody ducks.

My horse never wanted to drink. In the end I used a large syringe to get water into her

 

[Suffolkres]

Bloody ducks.

LOve the analogy.
.....massing for an attack?

I have had ducks, unlike chickens, ducks sh*t all over the place, thereby making the pond and surrounding environment very slippery.

Another feature of ducks (drakes in particular) is that they exist in packs (or is it gaggles?) please help out here ornithologists and Jonathan?

As for their forceful and intrusive nature, promiscuity and penchant for gang banging--- Harvey W has nothing on a drake.....

Ref: “gaggle” for a group of (geese) ducks, arose in the 15th century as an imitation of the sound of many geese (probably massing for an attack).

 

[TiredSam]

Another feature of ducks (drakes in particular) is that they exist in packs (or is it gaggles?)

My favourite is a twack of ducks, closely followed by a sord of ducks.

https://www.collectivenounslist.com/ducks

 

[TiredSam]

What we need is a fox.

 

[Nathalie Wright]

Hi. I think there were two psychiatrists on the table nearest the door. I went to speak to them after to try and work out what their MO is. One seemed vaguely sympathetic (but sometimes I think that can be a bit of an act) and the other not as much. From people who were sitting on the table during the discussion, they seemed to appear sympathetic throughout discussion, appear shocked at any mention of bad patient experience but then at the end recommend that psychiatrists should be involved. So let’s be wary about them I think...

My table was made up of people who are pretty much all singing from the same hymn sheet. I felt the discussion got slightly diverted to discussing names (I.e. people saying we need to separate ME and CFS) which I found a bit frustrating. I was mainly bringing up points about evidence, needing objective outcomes, that they need to consider critical literature etc. and again the NICE official on my table seemed aware and onboard and told me that they would be more critical when they look at ‘evidence’ this time.

I do think if we present a strong, united *evidence based* (or not as the case may be) front we are much more likely to get what we want & I worry that some people suggesting ‘different treatments work for diff people’ will allow GET approach to remain too.

They do seem v keen to include severe patients. & I think the fact that they will consider all aspects for children and severe patients will be a good thing.

Overall I’m cautiously optimistic but I do think we need to think strategically about how to get rid of GET/CBT & try and get most groups on board...

(Realise I’m repeating a lot of what has already been said.)

I’m wondering if there are a few bullet points we can get most orgs to agree with?

 

[Esther12]

But I agree it makes us look like hypocrites if at the same we insist on having CBT/GET removed on the basis that there is no solid evidence. We would have to also play the "surveys consistently show harm" card.ally the root of the problem. The weak claims and poor science associated with that are spared from healthy skepticism because they
are in line with this medical culture.

There are legitimate concerns about the use of surveys. I'm not sure how strong a card they are, and NICE heavily downplayed these results last time. After pointing to the problems with subjective self-report outcomes in unblinded trials, we need to recognise how survey results can be biased when we refer to their results.

 

[Keela Too]

. . . .and I especially ‘like’ the bit at the end, saying that “Evidence shows that patients who are committed to consistent therapy achieve better results.” . . .

Ha! This is probably the only time they checked with the drop-outs and noticed that they "didn't recover".
(Other times, when it suits the them, they assume the dropouts have actually recovered!)

These researchers just swing their data whatever way they like.

The above is like saying:
Evidence shows that men who are committed to never-wearing-a-hat, achieve a better head of hair!
Well duh, if you start to go bald, your head gets cold, so what do you do?

Actually I think both statements are the wrong way around.

The top one should say:
Those who are achieving better results, are more likely to be committed to continuing.

And my hat analogy would be better phrased:
Those who have a better head of hair, are more likely to never wear a hat! LOL

 

[Hoopoe]

Overall I’m cautiously optimistic but I do think we need to think strategically about how to get rid of GET/CBT & try and get most groups on board...

Did all patient reps agree that CBT/GET need to go?

 

[Nathalie Wright]

There are legitimate concerns about the use of surveys. I'm not sure how strong a card they are, and NICE heavily downplayed these results last time. After pointing to the problems with subjective self-report outcomes in unblinded trials, we need to recognise how survey results can be biased when we refer to their results.

They seem much more interested in patient testimony/surveys etc. this time, which is the right approach I think. Of course they are also subjective but patients reporting that treatments have caused them harm/exacerbated symptoms is not to be dismissed & I think is not something that competes with evidence from trials but a separate category of evidence to be looked at. E.g. would come under ‘tak[ing] account of the perspectives of people using the service’ (One of the four core tenants of the NICE guidelines.) I think Keith G did some good work at looking at how patient surveys are q consistent and critiquing how strong evidence they can/can’t be.

Basically, not all ‘subjective’ measures are equal... but ofc there are weaknesses in different kinds...

I’m prepared to be challenged on this point, it was just what came to mind

 

[Nathalie Wright]

Did all patient reps agree that CBT/GET need to go?

I was trying to work this out. It seems different groups have different priorities - some more on children’s rights, others on social care etc. Also I worry that there is a strand of thought allied to the ‘ME & CFS are discrete entities’ notion that says that GET/CBT might be effective for some who don’t have the right kind of ME or whatever. I do think on the whole that people would be happy they’re gone, but again it’s alsp about strategies that will achieve this...

 

[Graham]

I'll not comment on my collection of hats, nor of making fun of my dad's collection when I was a teenager.

I agree. I think that examples of current noticeboards, patient info and questionnaires would be brilliant. I think we need to gather them before the CFS clinics are switched to MUS.

I think there are some pretty good quotes out there that could be used to hammer home the point that patients are being misled or worse. I'm thinking of an A4 notice at one specialist that a friend of mine recently saw saying words to the effect that people with ME went to the bottom of the list.

The problem would be one of information overkill. So what we would need is a selective quote or two from as many different ME centres as we can possibly manage in the time we have. They wouldn't have to be too current, as nothing has changed in the guidelines, and nothing has officially been recognized since PACE.

The aim would not be to get rid of CBT and GET – the push for evidence-based decisions should do that. The aim would be to show NICE that their gently-phrased statements about "the reality and impact of the condition", "shared decision-making", "offer information about local and national self-help groups and support groups" (most seem to be dead against this), "provide accurate information", offer "assistance with occupational activities including work and education", and, above all "there is no known pharmacological treatment or cure for CFS/ME", which seems to be taken to mean no pharmacological cure, rather than no cure.

The reason most specialists and centres are against self-help centres seems to be a study or two that report that members of such groups show less improvement, and that the usual psychs keep banging on about it. There are two perfectly sensible reasons why it is probably true that they show less improvement. The first is that all such improvement seems to be subjectively assessed: I know they used membership of self-help groups as a possible factor in the PACE trial, but I can't remember whether it had any effect on objective measure (I'll have a look later).

The second is that there is normally a long wait to attend the ME centres, and if, in that time, people have joined self-help or support groups, they are likely to have started to get to grips with beating the boom and bust cycle, and starting to understand the nature of the condition (as much as any of us ever do). So when they actually get to the centres, there is less that the centres can actually offer them.