NICE ME/CFS draft guideline - publication dates and delays 2020

My guess would be that they won't do this as, until the new guideline is published, the old guideline remains in place. If they were going to do anything prior to the new guideline coming out then they would have done it already.

I obviously don't agree with it but I think that is the situation we are in.

 

Wonder if the NICE conference will still go ahead:
(Nov 11 2020)

http://www.niceconference.org.uk/speakers

 

But why? What was their reason for doing so? I find it unacceptable. We have people who are sympathetic to ME on the guideline committee, so it’s not as if NICE aren’t aware of what’s happened with GET.

It’s nothing short of a national scandal and I find it unacceptable they cannot remove and/or just write a note saying they do not recommend it anymore, until the new measures come out. What is their reasoning for not doing so and waiting for the new guideline (I’m sure people have asked so what’s their written response?) Especially since new circumstances mean it has been pushed back indefinitely.

 

From various tv programs, tweets etc saying that things that were previously going to take a long time to 'happen' eg working from home, courses being available online etc I wonder if all these online CBT, GET etc programs are going to be fast-tracked and thus avoid any scrutiny and be with us for the forseeable future.

The new guidelines were a significant threat to that; I'm not saying that that is why they are being 'abandoned', just that certain groups of 'researchers' (eg RMM,TC) will take the opportunity to implement their online programs even quicker.

 

https://www.meaction.net/2020/02/05/another-no-from-nice-take-me-seriously/

 

Well how can clinicians make their patients aware of the risks, when they themselves do not believe there are any risks, because of what the NICE guidelines say?

What an utter lack of responsibility and total lack of recognition of the terrible harm they are causing by doing this, from NICE.

 

NICE should at least issue an interim caveat on GET in the circs especially as coronavirus patients may well be encouraged to do it.

 

Absolutely agree.

 

Since the draft consultation was due to close in August, is it not possible to do things remotely, ie hold Zoom meetings with members of the Committee? A lot of things must already have been discussed, so whatever is left, couldn’t it have been done through video conferencing, email etc?

I’ve just been thinking about this, and knowing how long this coronavirus crisis is going to go on for, how much longer will we need to wait to see the new guidelines? I don’t even think it’ll just be a delay of 3-6 months. What if it becomes 18 months or even years. We can’t really wait, and I don’t understand why technology can’t be utilised for this. It’s so important

 

It seems like the kind of process that could - and in the current circumstances should - be done remotely. It might be that because some of the interaction will be more stilted then some more time should perhaps be allowed (but not too much!). I, like many people, am now working remotely from home, my company and all of us having pulled out some stops to make it possible. The technology is there for this kind of undertaking ... it just needs the will.

 

Yes @Barry I agree..

For example this:
“During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.

The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.”

But how long is that going to go on for?

How do we know that even if there are members of the NICE committee that are working as frontline staff, that they won’t want to continue doing this remotely? Some doctors I’m aware of are still seeing patients remotely for consultations while they’re not working at the frontline. I just don’t understand why everything else has to completely stand still, that NICE effectively made this decision for everyone for a period that could be months to years, especially something like this where we are only a few months away and remote working could work..

I was thinking of sending an email to NICE but I’m a bit of a nobody in the sense they don’t know who I am...Would a letter from S4ME help..Just feel really disheartened about this and the fact they’re not even bothered to at the very least add a note about CBT and GET.

 

links to sign don't work any more.

 

From what I understand, too much of NICE's own team, not just the members of its committees, is comprised of current or former NHS staff. Many/most of them are being drafted in to help.

It looks like all hands are on deck providing emergency information too. So there probably aren't enough staff to continue to undertake the behind-the-scenes work that's needed to finish any of the non-COVID-19 guidelines.

We did try teleconferencing, but it's hard with 20+ people on a call and, of course, they have to take steps to maintain confidentiality despite everyone being at home now. That's harder with kids, spouses, family members, etc, all being in close proximity.

It sucks, especially because we're so close, but I think it's right not to half-arse it. If it's rushed, the guideline could suffer because of it. I'm as disappointed as anyone but it'll be hard to get any public organisation to do anything that isn't coronavirus-related at the moment.

On your last point, I think it's quite complicated. They presumably can't pre-empt the final guideline or they'd be shortcutting their own processes. NICE follows strict protocols.

If they were to put a warning on the present guideline, then that would have to follow due process which would mean recruiting and forming a second committee, then assessing the same evidence the first committee has looked at, and taking at least several months to do so...

By which point, it would be pointless, because the new guideline would already have been published.

 

@adambeyoncelowe thank you for getting back to me about this.. I really appreciate it.

If I hadn’t seen your message I would have just been sitting here getting upset and worrying! I understand the reasoning and I’m glad you tried teleconferencing, but sad that it didn’t work out

I am honestly really concerned though, even if the guidelines aren’t going to be finished, about the ongoing CBT and GET. My local pain clinic was talking about doing remote video calls for the pain clinic during this coronavirus crisis. I think this is going to end up happening for CBT & GET. Infact that’s what happened to me, I did it over the phone a few years ago. So that’s not going to stop I think. I understand the issues but it’s very frustrating that NICE has such a strict process that in the end this is actually going to be harming patients. I am concerned as to how much longer this is going to take.

 

@ladycatlover There was a pretty short time frame for comments, so that a card could be printed and delivered, but then came COVID....

 

So let's say that NICE change the treatment recommendation for ME/CFS due to the campaigning of patients and patient organisations, before the guideline review is completed, so that GET and CBT are removed.

We'd be delighted, because we fully believe that there is no strong evidence to support them as treatments and that they have the real possibility of being harmful to some patients.

But with that precedent being set, what would prevent them changing the treatment recommendations again if a different campaign, supporting a particular treatment, sought to pressure them to do so?

What if Phil Parker and his devotees managed to create a campaign that caught the attention of the public, such that 20,000+ of them signed a petition demanding that LP be a NICE recommended treatment? We'd be up in arms of course, but with no solid argument to deny that change.

Additionally, there would be nothing to stop NICE reversing a decision based on campaigning should there then be a big enough campaign by supporters of GET and CBT.

So while I fully support the removal of GET and CBT as treatments for ME, I don't see how NICE can make any change until the review has been completed. I think in this situation the campaigning to have a review was appropriate, and now that we have the review that we wanted we have to cross our fingers, wait, and hope that the result is one that we support. Any attempts to make/convince them to change anything before the review is finished is just wasted effort in my opinion.

 

I don't think there are valid parallels here. There was never any evidence for this treatment model. The onus is on those making a case for a specific treatment, the act of supporting is irrelevant, it's evidence that matters and for the ME-BPS model there never was any. After years of practice the failure is all the more evident and there is still no valid reason it was used in practice in the first place. It was bullied through against explicit rejection of consent and official complaints, so the very process by which this was put into practice was itself completely flawed.

NICE commissioned a survey of outcomes, it showed what we already knew: it's useless. All the evidence supports that it provides no benefits and never has, the same today as when it all started from a conclusion decades ago. It's not a campaign doing the work, it's the mix of evidence that it is useless along with the fact that it never had evidence to even be considered as valid.

No one is recommending alternative treatments, as the LP quacks could be doing in that example, there aren't any. The CBT/GET model is simply invalid and the evidence supports that. Removing misleading evidence is basic self-correction, even more so when the process was flawed to begin with. Previously it was chosen to skip that entirely and enact it without any supporting evidence. That is a special case that once removed has no parallels in trying to push a different treatment model, it just brings us back to square one.

 

But the decision to remove CBT/GET is not based on campaigning. It’s based on the fact, or it should be, that GET and CBT is literally harming patients. There is no evidence to recommend CBT/GET, there’s no evidence it helps.

Whereas the lightning process isn’t equivalent to this. It is quite literally a quack therapy which masquerades as science. It is in front of our faces.

I just feel (and this is just my opinion) having known people who live and have lived in other countries, that in the U.K. there is far too much weight given to very formal processes, with a huge emphasis on “evidence bases”, which often in reality are not evidence based, and means things are a lot lot slower than they need to be, and yet things that are good for patients, but which don’t have a huge rigid “evidence base” yet don’t get implemented. And ends up in a situation where even notes can’t get added.

My mum said she found this to be the case in physiotherapy, and was surprised at the differences between how it was practised here, compared to how she practised back in the country she was from. In my mums words, she felt “fake” in the sense it is obvious what would help patients and back in her country there was a lot of freedom to do that, and therapists learned and improvised. Patients also had a lot of freedom.

But here she wasn’t allowed to do that; there was more a set of procedures that had to be done, as all sorts of guidelines and rules which weren’t always about helping patients, needed to be followed, rather than focusing on actual patient care. She also saw that the senior therapists spent so much of their time in meetings, and conferences, which she wasn’t used to at all. Also, therapists spent a long time writing notes, often longer than the treatment itself. These are some of the reasons she left physiotherapy..it was a big culture shock.

Or for example the coronavirus crisis. Take for example how south Asian and some other countries immediately implemented masks. Here in Europe they keep saying there’s no “evidence”. But there that didn’t matter to them. It was obvious, obvious to anyone really, that masks would be helpful at least a little bit. And that’s enough to use them. There was no “evidence base” for a lockdown but they did what had to be done immediately. Perhaps even no evidence base for sanitisation of absolutely everything.. but they still did it. Also, these countries made sure they were prepared after the last SARS epidemic, they didn’t wait for things to break and show them “evidence”, or whether it would be cost effective, with very formal processes, they just go ahead and do things.

Or the fact that in many other countries now, they are using medicines on a compassionate basis.. in China, Japan, Italy, South Korea, even some other European countries; even well before trials are finished or there’s evidence, even outside of trials, they are willing to try medicines on lots of sick and dying patients, knowing that in these sort of situations, you try everything to save people’s lives because they may well die otherwise. People are put first. That doesn’t happen here in the UK. And largely because of NICE guidelines.

In my opinion, I think things like NICE are all part of the same system. Maybe even part of the reason why the UK is leading the way on things like psychobabble and using CBT/psychology for so many things because of the “evidence base”, even though to people looking in, it’s laughable. Things that seem obvious and feels like we don’t even need to be pointed out.. end up needing to go through a long process with a focus on evidence bases, or other “considerations”, when patients get harmed, and they literally are unable to even add a note to say GET harms patients, because of messing up their own processes. Where, you get to a point, even the lightning process can be equated to something like getting rid of CBT/GET even with the harm it is causing every day.

I’m aware not everyone is going to agree with me.. This is not a reflection on any of the people working on the committee... I am so grateful for everything you’re doing, and the fact you’re doing work on this brings me so much relief. But this whole conversation makes me all too aware of the issues with NICE and often the way the UK in general approaches things like this.