UK: Priority Setting Partnership for ME/CFS

[Milo]

Priority 2 - Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?

I totally dislike this priority and I don't understand why the fixation on LDN and on known drugs for POTS. These would not be drugs prescribed for ME- more like symptom management- but we already know about them, and are bound to be the most used drugs- but then they are no cures and we all know that.
So then, in the spirit of looking at the whole compendium of pharmaceutical products for all diseases, why not focus on potential disease modifying drugs? Rituximab was one hopeful one- didn't work out. Constraining to specific uses (pain, tachycardia) limits greatly what should be looked at.

 

[Hutan]

Sadly, PSPs don't do that.

Yes, this PSP didn't do that. It doesn't mean it has to be so always. Thanks for trying to make it different.

There is definitely a case that we should do things slightly differently for ME

I think there is a good argument for PSPs for many health conditions to include a section on 'how' the research is done, and not just be concerned with the 'what'. I suspect most diseases would have some research methodology issues that are holding back progress, whether it be that followup isn't long enough, or more attention has to be given to stratifying or selecting participants, or commonly used outcomes aren't addressing what is important to patients.

If PSPs tried asking patients and clinicians about research methodology, they might be surprised at how much is learned.

 

[Joan Crawford]

I totally dislike this priority and I don't understand why the fixation on LDN and on known drugs for POTS. These would not be drugs prescribed for ME- more like symptom management- but we already know about them, and are bound to be the most used drugs- but then they are no cures and we all know that.
So then, in the spirit of looking at the whole compendium of pharmaceutical products for all diseases, why not focus on potential disease modifying drugs? Rituximab was one hopeful one- didn't work out. Constraining to specific uses (pain, tachycardia) limits greatly what should be looked at.

I don't dislike this priority - but I do think it is poorly worded in the final version. I argued for it to be a priority - not at No2 but in the top ten.

This is in part because: Patients that I have assessed that go on to make real world objective observable recoveries / big improvements to being mild affected / having decent QoL achieve this most often, that I have seen, via long term antimicrobial treatment of some kind. And they keep going. This is how I got vastly better and how I maintain my reasonably decent health with ongoing antimicrobials. This needs studying and figuring out the mechanisms (not necessarily due to antimicrobial function) and how this can/could be speeded up and who this would/would not work for. I didn't argue for any specific therapy to be proposed. There have to be are literally thousands of potential treatments, already approved for use, worth trying - given proper investigation and rationale.

 

[Joan Crawford]

[QUOTE="If PSPs tried asking patients and clinicians about research methodology, they might be surprised at how much is learned.[/QUOTE]

I don't think this needs to be in a PSP. PSP had a different and clear focus and cannot cover everything nor every angle.

Asking patients and clinicians about research methodology needs to be part of, if not integrated fully into medical research process as standard.

 

[adambeyoncelowe]

I don't dislike this priority - but I do think it is poorly worded in the final version. I argued for it to be a priority - not at No2 but in the top ten.

This is in part because: Patients that I have assessed that go on to make real world objective observable recoveries / big improvements to being mild affected / having decent QoL achieve this most often, that I have seen, via long term antimicrobial treatment of some kind. And they keep going. This is how I got vastly better and how I maintain my reasonably decent health with ongoing antimicrobials. This needs studying and figuring out the mechanisms (not necessarily due to antimicrobial function) and how this can/could be speeded up and who this would/would not work for. I didn't argue for any specific therapy to be proposed. There have to be are literally thousands of potential treatments, already approved for use, worth trying - given proper investigation and rationale.

The problem is, there are a thousand doctors out there (many of them quacks) claiming the same thing about their favoured drug of choice -- whether that's rituximab or bleach. It's all, at best, anecdote, and at worst cynical exploitation.

And that's precisely why I didn't like these questions. They don't actually help most patients -- they just appeal to pet theories of what helped a handful of people in completely uncontrolled circumstances.

It's entirely possible that when people get a bit better, they attribute it to whatever they were doing at the time, whether that was exercise, hypnotherapy, a drug, a new diet, and so on. This happens in all chronic illnesses, so it's not unique to us.

But that makes it more likely, in my view, that pwME aren't the exception -- they can be just as wrong as the people who claim to have recovered from their MS by cutting out gluten.

ETA: This isn't intended as a dig at you, of course, Joan. It's more about the complexity of confirmation bias, placebo, and so on, in uncontrolled environments.

 

[rvallee]

Seems as best as it can as a list of priorities.

There are infinite ways people with their own different agenda can twist good priorities outside of their intended meaning. That's oversight and a functioning process, distinct from priorities. And mostly not involving them at all, since they contribute nothing.

As we've seen over the years, it's the people involved that matter. If ideologues control the process, nothing useful gets done. If good people are involved, good things come out of it, usually in negotiation with ideologues, if they are present.

So the priorities are good enough, eliminating the toxic presence of charlatans is implied and where it matters in the end. Anything can be twisted, this is a solid starting point. Even more so it highlights just how irrelevant the entire obsession with psychology is, that it's not even low on the list of priorities, it's not even on it. As it should.

 

[Tom Kindlon]

I'm one of the people who's been around long enough to have been frustrated by the Medical Research Council's 2003 research strategy: a process that started in 2002 with the strategy being published in May 2003.

As I said on Twitter:
---
Contrast with rubbish MRC 2003 research strategy:a supposedly fresh & independent committee that seemed to be chosen so no one would challenge a BPS view.2003 strategy based on view no need to research aetiology & pathophysiology,rehab therapies would suffice. 2 decades wasted
---

Hard to fit a nuanced comment in 280 characters but that was a very frustrating process from start to finish.
A low bar to overcome but thankfully this process has.

 

[bobbler]

Survey of ME/CFS symptom load before and after some jolly sea-shanty singing and instruction on how to breathe.

Like Trish, I think the list is fine, it's just a shame there wasn't a way to signal that BPS rubbish is not welcome.

Was trying not to chuckle at some of these - just don't realise why the rest of the world won't see them as deviously ridiculous too.

On a side note re the oxygen one...

A few months ago I came across as I was following a link for something else to a local hyperbaric chamber that is for a centre that does things like that which supports those with MS. And allows those from some other conditions to use where relevant (now I think maybe it was a local news article with someone saying they did it or something).

It made me think - and really does now I read these knowing that is genuinely likely - why is it that 'holistic' and supportive can involve charities being funded with such things for those conditions vs the nasty joke of all this. Maybe timing has a lo to do with it - ie these nasties didn' have such a hold when these centres and research were being built for MS.

But also that there are facilities that could be used and tried for some of these we mightn't just not know about

 

[bobbler]

I totally dislike this priority and I don't understand why the fixation on LDN and on known drugs for POTS. These would not be drugs prescribed for ME- more like symptom management- but we already know about them, and are bound to be the most used drugs- but then they are no cures and we all know that.
So then, in the spirit of looking at the whole compendium of pharmaceutical products for all diseases, why not focus on potential disease modifying drugs? Rituximab was one hopeful one- didn't work out. Constraining to specific uses (pain, tachycardia) limits greatly what should be looked at.

Interesting. I very much agree on the second part.

I disagree on the first bit, and hope that it includes things like B12 and is looking at anything that might help some ie the idea that there could be packages worth trying - and I can list quite a few relevant situations where this being 'above board' is important (hospital, when taking other medications, travel, workplace, insurance, finances).

But also speed feels of the essence here in that if something works a bit then the difference in those around you seeing that is huge. Getting them on the table as 'more effective than throwing CBT at someone' changes the description for those who see the illness through the lens of which dept the treatment sits under etc.

Including GPs etc and employers because 'having something you can do' is a big step forward in the patient 'being seen to want to get better' and all of that, and taking away the 'awkward because what do you want me to do' stuff.

At the moment there are loads of people who if they tried something 'not from a doctor' might have their family/friends thinking they are just being strange/conspiracy theory-like too. Vs if it is prescribed you'd hope a different view altogether on them.

 

[Milo]

Interesting. I very much agree on the second part.

I disagree on the first bit,

we don't have to agree on everything Diversity and divergences of opinions is welcome and expected

 

[CRG]

The priority setting process was underway before I became aware of it and it seemed churlish to criticise after the fact so I haven’t previously commented on this thread, despite many reservations about the direction of the PSP. The following is delayed full “churl”.

No doubt seeing an opportunity to capitalise on the interest in ME/CFS of the current Health Secretary, ForwardME cleverly co-ordinated release of the final 10 priorities with ME Awareness week and got the Dept of Health to sign up to the list – meaning that this is what we now have to live with, like it or not.

As it happens I don’t like it very much, but the question now is how best to use what is there, and that depends on understanding the deficiencies as well as any positives.

The first major challenge may be how this list of 10 questions meshes with the results of DecodeME. Potentially DecodeME could render (excepting Q 8) the entire list irrelevant and although that is perhaps unlikely, the DME results could substantially short cut the list as it stands. IMO that would be a good thing and it is something should be factored in to how the priority listed is used, funded etc.

Structurally the list is problematic, it doesn’t discriminate between that which is readily examined by falsifiable hypotheses and that which requires significant interpretation to render it capable of investigation. This is an open door to investigators with closed and unhelpful perspectives ! I think it is this structural problem rather than any lack of conditionality on methodology that leaves the priority list open to exploitation by bad actors.

A further issue is what isn’t on the priority list but which may be essential to making progress both in the scientific understanding ME/CFS and the provision of services to PwME. The most obvious absence from the list is basic epidemiology, something which is currently lacking for the UK population. Coupled to this is any question related to meeting the care and support needs of PwME in the UK.

At this point I’d say the list was a triumph of advocacy over scientific practicality, about which it is too late to be careful what you wish for. The 10 priorities are now a political reality which makes them very difficult to row back from or to substitute. What I would argue for at this point is a research programme that is hinged on DecodeME, such that any research funded prior to DME reporting is predicated on DME producing actionable data, and publication of DME serving as the launch and/or reset of ME/CFS research priorities.

 

[Trish]

The following is delayed full “churl”.

I share some of your concerns, but my attitude to it from the start was that it was going to happen anyway, so our best option was to participate so we might have some influence. At least it makes it clear, I hope, that funding should focus mainly on biomedical research. It is now up to researchers to come up with good funding applications, and for any of us who are able to try to get involved as patient reps on research projects.

Having seen the lists that of 10 priorities for some other diseases, I think our list is a lot better.

 

[bobbler]

we don't have to agree on everything Diversity and divergences of opinions is welcome and expected

totally get too that reducing ME to 'symptoms' has been misleading in too many ways. So the 'thrust' of your point I think - in that this needs to be ME-specific whatever it is (and lots of symptoms are just side-effects of the underlying energy/PEM etc with us).

So I'm very much caveating the idea that these 'find something that is already licensed' will hopefully start with things that have worked for those with ME as the main tickbox, and not some tenuous link based on 'people with ME sleep funny, and this has 10% effectiveness across all those who say they sleep funny whether they have ME or the same sleep issue or not'.

We've already had the attempts to pretend we are just 'normal people' with some pain, sleep disturbance and fatigue (and people still seem to be being sent off to generic treatments for those)