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

[adambeyoncelowe]

I should add, they joked that they weren't used to getting praise. I think they know the consequences of getting it wrong.

 

[Amw66]

I get the impression there is no real evidence base. I've seen PACE results be quoted by them (but without attribution). I think they do claim an evidence base but never seem to point to anything anyone would think was reliable but rather they seem to believe that if they chant 'evidence based treatments' 10 times every morning then that is sufficient.

I'm thinking the whole IAPT programme is a con and they will be found out when it doesn't deliver results.

The IAPT programme will shift increasing numbers of long term patients into cheap therapies and enable the selling off of profitable services post Brexit
There is no evidence base, the drive is political

 

[Amw66]

She is a paediatric physio.
She also said that they had just finished the Magenta trial and the results looked good!!

From previous studies they always do when you carefully pick your parameters....

 

[Amw66]

Well, UCLH run their paediatric CFS (never call it or diagnose anyone with ME) as MUS/CFS. Here’s a picture from the waiting room.

It is so sad - the huge margin by which they simply do not get it.
It would be interesting to see some stats from here- is it like Bath where if you fail to improve you are simply labelled with something else and dumped?
I fear for children being " cared for" in places like this

 

[Alena Lerari]

It is so sad - the huge margin by which they simply do not get it.
It would be interesting to see some stats from here- is it like Bath where if you fail to improve you are simply labelled with something else and dumped?
I fear for children being " cared for" in places like this

Being labelled with something else and/or dumped is actually the better option. You can also get accused of not engaging, not following what they say (they control every minute of the day and night) and therefore stopping your child from getting better (never mind that the current guidelines say that you can withdraw from any aspect of the ‘treatment/management’). That can obviously lead to more sinister things like child protection.

 

[Amw66]

Being labelled with something else and/or dumped is actually the better option. You can also get accused of not engaging, not following what they say (they control every minute of the day and night) and therefore stopping your child from getting better (never mind that the current guidelines say that you can withdraw from any aspect of the ‘treatment/management’). That can obviously lead to more sinister things like child protection.

This illustrates the benefits of not having "experts" - when first diagnosed i was angry, now on reflection, it would simply have made things a lot worse.
Following pro formas and advice frm paediatrician simply made things worse, i dread to think what a cfs/ mus clinic would have done.
The picture is worth someone tweeting

 

[Daisymay]

The IAPT programme will shift increasing numbers of long term patients into cheap therapies and enable the selling off of profitable services post Brexit
There is no evidence base, the drive is political

Yes and I think one major concern regarding new NICE guidelines is that they accept the evidence base for effectiveness of CBT/GET is seriously flawed, none existent, and withdraw them in their present form, but as we've heard they don't want to leave us with no treatments, so we'll get a form of CBT/GET/activity management lite.

With CBT/GET/activity management lite they will say CBT is now to help us deal with a physical disease and exercise activity to help people function safely without getting deconditioned or overdoing it .

This scenario would have no scientific basis, to back it up, no RCT's, which would surely be against NICE rules and regulations?

But most importantly I think it would be a disaster, conveniently leaving ME open to being scooped up into MUS clinics, therefore branding ME even more strongly than it is just now, as a behavioural/psychological disorder.

I think this type of scenario with CBT/GET/activity management lite is very dangerous for us. I suspect this is what they want to do, easy option for NICE and keeps the psychs control of the disease in a different format.

So I think it is absolutely critical to get the biomedical basis of ME cast in stone in the new guidelines so that they emphatically can't subsume us in MUS, that to me is paramount.

 

[Sly Saint]

I would be interested to know what the evidence base for therapist-delivered treatments for MUS is - if there is any. My impression has been that PACE and the GET meta-analysis for ME have been taken as the bedrock evidence from which to extrapolate. If we can get to the point where it is agreed by NICE that this evidence is not there then the MUS programme will be out in the cold in terms of its own guidelines. There are other political forces at work in the NHS, like IAPT, but much of the programme is driven by academic doctors wanting to build psychosomatic empires through pseudo research. If it becomes clear how pseudo this is for ME maybe it will dent the bigger program.

 

[Suffolkres]

Being ....dumped is actually the better option. Yes indeed and less FII "risk" or "mum blame"......
Been there and have the tee-shirt- 2000 I was being driven down this route.
In 2005 the Mental Capacity Act also triggered further threats with Deprivation of Liberty. ( adults at risk too).

 

[Jonathan Edwards]

I think this type of scenario with CBT/GET/activity management lite is very dangerous for us. I suspect this is what they want to do, easy option for NICE and keeps the psychs control of the disease in a different format.

So I think it is absolutely critical to get the biomedical basis of ME cast in stone in the new guidelines so that they emphatically can't subsume us in MUS, that to me is paramount.

I don't think we should see 'NICE' as made up of people who want to do anyone down. I think the worst one can say of NICE is that they are bureaucrats who want an easy life sometimes. Even that may be unfair. Talking to Peter Barry and Mark Baker last week my impression is that they genuinely want to have happy customers. If anything the desire to please the patient community may get in the way of the best solution.

It seems that in the past a group of psychiatrists have taken charge of decision making but these people were notably absent either from the meeting or the proposals we were shown.

So I don't think NICE have any preference for having psychiatrists in control, but I do think they may want an easy option - or at least one that causes as little rumpus as possible. The trouble with that is that it may lead to the idea that they should be 'inclusive' and allow lots of different options, even if with a weak evidence base. That of course allows the psychiatrists right back in (having never actually left) and we are back to square one. My position has been that the only way to keep unproven and troublesome treatments out of the picture is to stick to the normal NICE policy of requiring a good evidence base.

And that makes it hard to have a 'biomedical basis cast in stone' because it isn't cast in any stone in the literature. We cannot say to NICE 'we have decided that ME is biomedical and you have to agree'. All we can say is that there is no evidence that the psychiatrists either have any coherent theories or trial based evidence for their approach being of any value. In a court of law the relatives are not allowed to tell the judge that the defendant has to be acquitted because they say so. The judge has to decide on evidence. The problem we have is that the psychiatry people have been doing this. If we use the same tactic we have a very weak position.

 

[Sasha]

So I think it is absolutely critical to get the biomedical basis of ME cast in stone in the new guidelines so that they emphatically can't subsume us in MUS, that to me is paramount.

I think it would be better to have ME as the NICE poster child of how a disease that isn't yet understood biomedically shouldn't be treated as though it's psychological by default. That way, the poor (non-ME) patients who get a MUS diagnosis might benefit from the same logic and the same protection as we're seeking.

Though I do certainly agree that the sooner that we can get solid, replicable, sensitive and specific biomarkers in place for ME, the better.

 

[JemPD]

My thanks to all who participated in the meeting.

As much as I like Prof Chris Ponting and am very pleased that he is working on the T cell clonal expansion, his reasonable comment about 'the M.E. spectrum' and how eventually causes may be revealed for some, filled me with dread. It is very easy to imagine the idea of a spectrum solidifying into a 'divide and conquer' scenario:

'yes, there are some people with a real, predominantly biomedical, illness that exciting research will identify a biomarker for. And the rest with their false illness beliefs can be lumped in with all the other people with imaginary illnesses and can continue to be looked after by the existing clinics and encouraged to have GET and CBT.

Oh, and until there are biomarkers, the subset of people assumed to have the biomedical illness will consist of the clearly non-hysterical; that is the educated adult males (and the occasional educated adult female) who have never been depressed or anxious.

So, there are enough patients and funds for everyone! No need for awkward arguments about who is right and who is wrong, and no need to drastically change anything much at all.'​

I think this is precisely what will happen

I think we should all try and get on the same page as @Jonathan Edwards suggests.

The trouble with that is that it may lead to the idea that they should be 'inclusive' and allow lots of different options, even if with a weak evidence base. That of course allows the psychiatrists right back in (having never actually left) and we are back to square one. My position has been that the only way to keep unproven and troublesome treatments out of the picture is to stick to the normal NICE policy of requiring a good evidence base.

And that makes it hard to have a 'biomedical basis cast in stone' because it isn't cast in any stone in the literature. We cannot say to NICE 'we have decided that ME is biomedical and you have to agree'. All we can say is that there is no evidence that the psychiatrists either have any coherent theories or trial based evidence for their approach being of any value. In a court of law the relatives are not allowed to tell the judge that the defendant has to be acquitted because they say so. The judge has to decide on evidence. The problem we have is that the psychiatry people have been doing this. If we use the same tactic we have a very weak position.

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.

 

[Hoopoe]

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.

I proposed that despite seeing this. The thought was that if NICE is unwilling to say that patients should receive no treatment, then we could at least get them to recommend some fairly harmless supplements over potentially dangerous GET. It's a political move.

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.

In the end the question seems to boil down to how patients should be treated when they have chronic symptoms that cannot be attributed to a known disease. Current thought is to assume a psychological disorder and treat accordingly.

It's possible that we will win the CBT/GET fight only to then have to fight the MUS nonsense, and then some other successor. The medical culture is that of assuming a psychological disorder when symptoms are unexplained and that is really 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.

 

[JemPD]

Sorry cross posted with @strategist - removed the following from an edit to original post - it didnt seem fair to add such a significant edit when several people had already liked original post.

I don't see why the clinics cant be maintained by ditching the GET/CBT delivery but keeping specialist nurses giving pacing advice, referrals on (for POTs testing/any other issues), plus OT & a prescribing physician to help with symptom relief meds, and say, a yearly follow up. Also giving support with benefits and referrals to (ugh) IAPT... if patient desires. (obviously i'd rather IAPT didnt exist at all & referrals for proper counselling was available, but we need to be realistic.

 

[JemPD]

I proposed that despite seeing this. The thought was that if NICE is unwilling to say that patients should receive no treatment, then we could at least get them to recommend some fairly harmless supplements over potentially dangerous GET. It's a political move.

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.

In the end the question seems to boil down to how patients should be treated when they have chronic symptoms that cannot be attributed to a known disease. Current thought is to assume a psychological disorder and treat accordingly.

you make a good point @strategist.

 

[MEMarge]

@Andy @Adrian @Nathalie Wright

Hi guys, hopefully someone can upload full set of slides not scribbled on!

 

[Hoopoe]

But enough of these thought experiments. It is not a good idea to squander our credibility by recommending unproven treatments and the likely outcome is that NICE will not remove CBT/GET from the recommendations but instead add these other unproven treatments.

So let's do this instead: get NICE guidelines to mirror this document https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

and get them to admit that there is no evidence for any treatment.

 

[MEMarge]

I have attached the above as it includes suggestions of extra ways for lay members to provide input.

I believe that people who are interested in ANY roles need to apply at the same time as Committee members.

I did ask Kate Kelly, who is guideline lead for NICE, whether job shares would be possible. I cited someone at her table who is interested in participating, but was clearly wiped out after 3 hours, plus a planning session beforehand. Or the posiibibilty of having reserves.

I do think this is a real problem. Last time there were, as I understand it: 2 people who were mildly affected and one who was severe and unable to attend several meetings. I think she contributed in other ways, but not sure how much of that was minuted.

In other illnesses , such as MS/RA/Parkinsons, there is already a wide understanding of the nature of the disease and its effects and progression.

This is not widely the case with ME

 

[MEMarge]

And did you see how they compare mild CFS to Mus headaches !

I think a compilation of noticeboards across the country would be quite powerful for the next NICE meeting to show what a shambles the whole thing is in terms of inconsistency etc ?

Thank you @Alena Lerari for showing this. (And welcome aboard ...I’m looking forward to your next posts )

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?

 

[Cheshire]

But enough of these thought experiments. It is not a good idea to squander our credibility by recommending unproven treatments and the likely outcome is that NICE will not remove CBT/GET from the recommendations but instead add these other unproven treatments.

So let's do this instead: get NICE guidelines to mirror this document https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

and get them to admit that there is no evidence for any treatment.

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