UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

I’ve not managed to keep up with things for a while and consequently I have only just come across this thread. I’m not well enough to read through it all so apologies if I’m repeating what has already been said (almost certainly the case).

First, I want to thank everyone for contributing to this thread and particularly to @Trish and @Hutan for the excellent letters they have sent.

I hope I’m wrong but my impression is that they are going to be used by people providing services to try to justify doing whatever they are doing, whether or not they are actually doing anything useful. We have been here before.

Trish quoting @sarahtyson:

My fear is that those who believe in particular therapies as treatments for people with ME/CFS will increasingly seek to use service evaluation toolkits to try justify the continued use of what whatever therapy they believe in, instead of relying on clinical trials, which have repeatedly shown that clinicians preferred therapies don’t work.

 

That's worth posting on the MEA facebook page

 

I’ve only just come to this thread and I am shocked to read the post above.

In this thread you wrote that you’re “not terribly interested in the history”. It is unclear from your comments above if are familiar with the history and chose to use it to insult us as deeply as possible, or whether you are ignorant of the history and how such language has used against us.

As you many be aware, many members on this forum have been involved with publishing criticisms of PACE and other very low quality research. I am certain that without without members of this forum the NICE guideline would not have been revised in the way that it has been. We have all been subjected to collective ad hominem attacks from those whose work we have criticised. That you have chosen to use such language in response to constructive criticisms betrays an astonishing lack understanding and sensitivity.

We all sometimes writes things in anger, which we later come to regret. I sincerely hope that you will take the time to reflect on the appropriateness of the comments above and amend them and/or apologise accordingly.

 

I don’t use MEA Facebook. Feel free to quote me there or anywhere else (with or without typos!)

 

And yet she says she’s “not terribly interested in the history” and chose to insult us with language which has been used to insult and discredit us in the past.

The MEA is in a hole. The time has come to stop digging.

 

Sorry for the flurry of posts. Final comment for now: To me, what this project and the comments on this thread highlight is the problems which go way beyond ME/CFS. @Jonathan Edwards referred to these in his evidence to NICE, and elsewhere. Vast swathes of the industry of therapist-delivered interventions appear to have been built without [scientific] foundations.

[edit: And while some people are willing to acknowledge the problems with PACE, and CBT/GET, they are not yet willing to join up the dots and accept the wider implications.]

 

I think I got to the point where PROMs aren't just useless, they're actively harmful. Not inherently, rather it's because they are misused, but since they are systematically misused, and it's basically how evidence-based medicine works, it's a distinction without a difference.

There is a discussion in another members-only thread about how a forum member tried to raise awareness of ME/CFS in their nation's sub-reddit, only to be met with invective and hostility. The forum member calmly presented published research showing how horribly low the quality of life of pwME is, and was simply dismissed. General public and medical professionals alike do the same thing.

For years I was baffled by why we have several studies using standard PROM instruments, like the SF-36, showing how devastating ME/CFS is and why it has made zero difference. And I just realized that for all intents and purposes, medical professionals don't trust PROMs, only believe in them as long as they validate their expectations. If they show data they don't expect, they simply dismiss them. If they show data they expect, they're well and good. If a 'pragmatic trial' shows benefits using a PROM, the benefits are real. If a trial shows harmful outcomes, they're simply disbelieved. And just the same, a 'pragmatic' trial is well-and-good if it validates expectations, and flawed if it doesn't, even in cases where on all the points they raise, the trials they dismiss actually fare much worse.

So when a PROM shows horrible quality of life in people with MS, it's believed, because MS is believed. But using the same common standard instrument, a study showing the same with us is simply disbelieved, because most MDs don't believe in ME/CFS. And in the discussion I mentioned above, someone commented how it's "normal" for questionnaires to show low quality of life for us, for the same reasons why it's the case in depression, because we have poor mental health. Even though the SF-36 accounts for that and in fact we see in many studies how we fare worse in general than major depression, except on the mental health dimension. There is no amount of showing so that will convince anyone, even in published research, because the data are disbelieved simply because ME/CFS is disbelieved. General public and MDs react the exact same way, for the same reasons.

So if a common standard PROM like the SF-36, which is IMO fine enough for most purposes, is widely disbelieved whenever convenient, and believed when it goes the other way around, what use is there in yet another PROM, if it will be believed/disbelieved as convenience demands anyway? In the end all it may do is spur yet another several years of doing the exact same studies with the same recipe, intent and purpose, but with this new instrument, which they'll only believe if it validates them anyway.

The problem of course isn't with PROMs themselves, it's with how dysfunctional and arbitrary evidence-based medicine is, and how much of what medicine does is still driven by beliefs, myths and traditions. We simply cannot change that, and for that reason PROMs are essentially actively harmful in most cases, and useless at best. In fact patients should probably stop responding to them in most cases, I think that on balance they do far more harm than good.

 

EDITED/APOLOGIES: I'd meant to post the below, and the top bit was half-formed on phone but not checked. I will do so and post that so once I've checked it through.

and to add further to point one in this above comment about making sure physical function is part of it then objective measures being vital (EDIT: NB if we apparently have no choice but to have a measure in this way at all - because I agree that it isn't the way, and PROMS seem the least best fit for all the listed claimed 'reasons/justifications')

the following reference from a paper which include Knoop ironically explicitly notes that for CBT ‘fatigue’ was linked to ‘perceived activity’ ie how much pwme thought they were doing but NOT 'objective activity'

their graphs show the pattern for this objective activity which most pwme will be familiar with of those who tried and did more end up not being able to sustain that and it tailing off

https://www.s4me.info/threads/the-p...-reduction-in-fatigue-2013-knoop-et-al.24643/

Im not great right now so would love others to chime in so I can get this right but if insisting on some measure being done (and I have big issues with load here and that it will have skewed samples as they only treat mild and won’t count drop out and follow up needs to be years later not months) . But it feels like given the activity one is coming up the weighting of objectively informed measures of physical function within this tells us whether this is trying to measure me/cfs or a re run of pace with measures that ‘get the right results’ on the same treatment

my gut is we need patients to be not reporting activity but monitoring fir themselves so their assessments are based on objective - because they know all the other sources of exertion (noise virus talking) , but you can’t use perceived with CBT being used so heavily - particularly when ‘embedded’ to influence perceptions

 

I have concluded that you are not wrong.
What I don't understand is how you use measures for that. If everyone gets better does that mean you are doing fine and don't need more staff or that you need to do even better?
In all my years in medicine you only ever used treatments that had reliable evidence and never used outcome to justify usage because in routine practice outcomes are too dependent on context.

 

A researcher with ME is not a synecdoche anyway. When I was mild, 8 had no concept of what it was like to be moderate. Then I got severe, and still had no concept of what it’s like to be moderate. Now I’m moderate, I have some understanding but wouldn’t dare assume I can represent mild or severe from my memory, and certainly not ever very severe. One person with ME is just that- one person.

 

agree. there is a big issue that I'm not sure whether it would be the case for other health conditions but certainly wouldn't be the case for research in other sectors, of thinking that rather than picking someone specifically 'qualified to represent the exact situation being looked into' (eg if it was severe people on the topic of exertion then you might want severe with a variety of supported or non-supported situations, and maybe ones where exertino can be controlled vs not such as noise and other issues) rather than 'someone with CFS' ticking the box.

And people being able to suggest a 'recovered' or someone who thinks they have 'managed' have more insight to offer the iller rather than the other way around - which is a heck of a mindset. If it was proper studies where people were picking up on how those who did better were in situations that mean they could control their exertion that is one thing but what help is it for someone in poverty and bad housing or trying to keep a job to have someone who was in a quiet house with family support and able to take space mentioning they also did meditation for 20minutes to them.

I just don't understand how people think these levels of measurables are useful to the person in forming their own self-analysis and certainly not in being accurate because the weighting of each measure will be individual to their own situation eg if someone has a nightmare neighbour then the noise issues could be affecting their health massively in all sorts of ways, so using someone with an algorithm averaging out to suggest how it sums up with other people's factors is just misleading and unhelpful.

Just like the issue as simple as measuring steps vs the impact of those steps might miss if someone is able to potter gently on one level vs someone who might be staggering on stairs. and doesnt know that those many steps were because PEM caused them to need the loo lots and they are less efficient at steps when in PEM so weren't a sign of 'health'

It's bad enough doing this in quite a directed way but then to be in such a rush to not think through what will definitely be consequences is an issue given these have clearly been asked for from certain specific quarters for a reason/agenda.

 

there is quite a simple thing going on here

the problem with the old guideline on CFS could be summarised that they were treating a serious medical condition with rehab without treatment first. Just as bad as if they did cancer, MS, RA, asthma or anything else with no treatment then any suggestions of being able to then try and act more 'healed' would be silly.

just as there are new guidelines saying that the condition needs to be treated as a biomedical condition (and we have a bunch who want to parse the guidelines and carry on regardless) introducing measures that only factor on the 'rehab' measurements is indeed going to condemn patients back into those fundamental changes never happenning.

In fact even worse they are designed to move away from those few clinics and physicians wheer medical assessments are taking place. Where new red flag issues are taken seriously as something that might be tackled or headed off and deteriorations are taken as needing pretty quick input to avoid permanency due to over-exertion/reduced envelope.

Could you imagine if someone suggested rating cancer or MS based on a PROM looking at perceived mindset and activity, along with a specific limited grab-bag of symptoms (taken in a 'perisistent symptom' format) - and not even rating those in relation to what someone was capable of before they got ill?

This feels like a way of inadvertently 'reframing' the whole thing and making it a 'look at the jangly keys' with little likelihood that proper care with then be respected or instituted - which is the main aim I'd hope that the ME Association is behind clinics needing to move towards.

I don't object to clinics needing to be measured to show up the bad ones offering inappropriate care. But us getting caught up in the denial of those who want to believe pace was still right it was just the delivery nonsense, which I think is behind all of this, is just putting us back into being use as pawns and guinea pigs who worse than that aren't really still even going to be 'tested' on what matters again. Just a means to an end.

Where is the bit that means that where we do have a repeat of the instances from the parliamentary debate where people go in walking and come out in wheelchairs or bedbound from 'treatment being delivered' this is red-flagging to the ME A and anything will immediately change at that clinic? Instead all the data will be based on those who finish the course and can attend to the end?

I think there are certain urgent and basic lessons that are covered by standard medical care that do need red flags and measures and all of this will act not just as a distraction but worse diversion from the one important thing being measured which is harm and the second most important thing which is that individual's actual health.

As we seem to be getting back things defending this as 'others will do this if we don't' I'm trying to flag in mathematical and logistical terms where the manipulation is occuring. But I do think this needs a pause and an urgent stop and strip back to ask what is it that ME Assocation thinks they are doing as a pragmatic compromise here, because in its current form the risk is that it is closing down all sorts of important changes and creating misleading datasets from which some want to relegislate the same old 'the rehab must surely work, you are just measuring the wrong people, the wrong way, some are delivering it wrong' because they work in a culture that literally seems to have it written down that their subject: do not measure harm or acknowledge it (as per what they will measure in trials)

If they really are doing measures then put in a yellow-card type system? which is the real standard and norm? why wasn't that on the table for example for a biomedical clinic?

 

Indeed, it's OK we don't offer doctors or research because these very mild people get to the end of this course that includes saying things more positively and the same old approach dressed up with a different name as a Krypton factor to filter out those least well and filled in these PROMS which infer that rather than social-pressure x subjective satisfaction stuff it is 'a treatment' = don't need to actually treat.

this feels flawed by the same distracted by 'is it internally consistent' vs 'it is measuring what it needs to/is the measure meaningful/appropriately weighted' that things like the CFQ were so it is a laugh someone used a contrived critique of that to then jump to suggesting that means another PROMS proved to not fix the actual fundamental issues of it are somehow signed off by that.

I do think that we need to try and get the ME Association to understand what - even if it is justified on the threat that 'better to be in the tent because they'll do this anyway' the absolute risks to avoid here are and what and why certain people will be pushing for in these measures that will distort this (hence noting the Crawley et al (2013) paper being keen to write-out the physical function requirement for recovery and Knoops paper suggesting if you make people think they are doing more it will be quite different to their objective activity).

Worse than that from a logic point of view it could literally be dropping a literal dystopia onto pwme where the reality of all will be measured based on the lowest common denominator perception measures that have been manipulated (because that is the point of CBT) in place of the objective. People whose objective activity gets worse due to x 'treatment programme' will again get told those facts aren't true 'because the average of a krypton-factor-filtered sample on perceived activity over a short-term measure' are then used as a proxy that we all know is how the physical harm happens (because it is that short-term not realising how much harm you are doing that leads to that long-term very much iller indeed).

The psychological and physical harm potential by instituting these things without a huge amount of checks is foreseeable and not hidden if we can make these papers and the guidelines assessment of research clear. I think the thought it from some is that once they have a measure it will hide and reframe what basis 'evidence' is counted on. How will someone prove these clinics made them worse when they go from walking in to bedbound in 2yrs? If these can't encapsulate that then I have to ask why it is being signed off?

 

On this specific point, I wouldn't be against a measure / toolkit for newly diagnosed people, if they want to use one.

I say this because I remember being diagnosed with ME. It was more than two decades into my illness, but even so there was so much I didn't understand. And after spending a couple of years on a learning process, I still think I had no real idea of how impaired I was. So a simple tool that helped me to explore my functional capacity and learn to pace, along with providing some of the vocabulary I needed to communicate it to other people, would have been quite useful.

Obviously, though, that's not an outcome measure, it's about guiding and (hopefully) shortcutting the learning process.

 

Now I've cleaned up my accidental mulching another quote I was pondering with the posted intended I'm going to insert a quote from the paper I'm thinking of when I mention this:

There is a big issue, in fact I'd say the real crux of ME isn't the 'PEM' it's the deterioration from consistently over-exerting or getting a further battering to your system from a virus or other health insult etc. I think it is easy even for patients with many years under their belt to fall for 'pushing the boundaries' feeling good and them doing well for 6montsh not to realise that is actually fast-ville to deterioration.

And the other big feature of ME is, due to that delayed 'feedback' that PEM is (and represents) we over-exert because we feel it later, so learning our limits retrospectively is one of the first things we have to do as self-insight. And perceived activity being very able to be manipulated by something like CBT or some over-enthusiastic manipulative mindset making it worse and paying little resemblance to objective activity.

Worse of course, without someone being asked to use said objective measures to make themselves more accurate on their geustimates of what can be measures, and then being able to add their own context of extra health-impacting factors that can't be measured that way eg noise, physical stressors (heat, light, being shouted at, stress, physical position, discomfort and pain) and so on as well as why someone is doing that objective activity (eg PEM meaning needing the loo, sciatica or what not so actually 'weller' when finally able to sit and stay still after that) then these measures risk being misleading.

And certainly will be if not being looked at in individual time-pattersn, but being used as an 'those who did more were more healthy' cart before horse cliche we've all suffered due to.

Is this appropriately understanding of these issues? - what is needed is helping to understand how to interpret data they can use for themselves, not collecting subjective stuff early on (which is the first decade really because it is about trial and error of learning you can't cheat it by bitter experience when you thought it was all 'going well being above envelope' and the first time you tell yourself maybe you went downhill because of a virus or something).

If anything like this is being done it should be very carefully - and the voices being primarily listened to certainly shouldn't be those who are stuck in denial determined that they just didn't realise some of them were doing it differently and never saw any come back disabled (if they didn't they should see that as a red flag they were likely one of the most harmful because being scared to do so/seeing it as pointless is what happens). Worse when their focus when someone points out all the fallacies and traps, that have actually already been proven to be problematic (so aren't 'imaginary' but legally foreseeable) thinking that name-calling of those issues is OK.

I think there is functional fixedness keeping this freight train powering through based on things some people have been told and taken as read and unchangeable but maybe need to be re-looked at as in all likelihood there are other approaches to addres those claimed issues these PROMS apparently are needed for. There is a lot of distraction going on here due to how much is trying to be (unnecessarily) bundled into one thing in a tight timeframe and I think the eye is being distracted from the most fundamental issues that need to be being kept an eye on/nub of the measures.

 

This is the graphs from the paper I keep mentioning that shows how dangerous using perceived activity as a measure on its own is:
https://www.s4me.info/threads/the-p...-reduction-in-fatigue-2013-knoop-et-al.24643/

The thrust of what was 'learned' from that paper which included Knoop as an author was the idea that you could force better subjective scores to be given on fatigue if you managed to manipulate people's mindsets into thinking they were doing more than they were. Which makes sense because all of our calculations are on whether that activity 'tired us out more than usual' for fatigue, so by using mind-techniques to gerrymander the denominator would do that.

But it's also hugely problematic when what keep pwme safe is being able to stay within their envelope which requires the opposite: long term the illness means the worse thing you can do is mess with someone's mind in such a way you make them lose their ability to sense what they've actually done exertion-wise so they don't write checks that long-term their body ends up crashed. And so on..

But I can see why such 'mind-changes' would be great for the person doing the survey asking 'perceived activity' at 3 and 6montsh only in those who survived that by getting to the end of the course.

 

How do I get in on this Research thing? I don’t want to be paid. I just want to publish a paper supporting my point of view, after surveying about 10 of you on this thread.

 

As a side note, easy to get distracted by someone wanting to frame the conversation on 'how would you tweak this huge amounts of measures of the patient'

it has taken me a moment to step aside and wonder why the priorities/focus on the ME Association haven't been eg:

- to come up with a scale that assesses what the clinics are delivering as per what is actually needed by patients, and which patients they do cater for or neglect. And each bit has to be new nice guideline compliant or get a zero and a red flag (negative number for being worse than never having offered before if tinged with the false beliefs being embedded the wrong way around). Are they offering a reach-out service that is liaising for those who are very severe for example. DO they have a service that can look at the medical stuff for severe. For those who are mild/moderate are they doing proper assessments that are simple enough to capture what is needed without fuzzying it and providing appropriate letters to employers etc and support services that are accessible (not just signposting) for benefits and care. And so on. That surely is the 'measure'. If they are doing these then the quality of delivery can of course be assessed.

- to come up with surveillance that helps spot downstream (and then potential upstream) effects and misdiagnoses for a condition known to be used by some, and having been explicitly advertised as a dumping bucket in the past (they all go to the same end treatment of re-education so who cares if it is MUS, FM or CFS hey?). By this I of course mean that as people get additional diagnoses or changed diagnosis this is being recorded for surveillance to help inform research.

- Same thing for prognosis. But that of course is harder at the moment. Probably lessons learned from shoring up privacy concerns and population cover for the first two will help to make this appropriate in accuracy.

There is no way that the latter two can be done through clinics alone. Not in their current state.

I'm conscious there is a bigger picture here and these PROMs become a distraction. measuring the bit that doesn't work and getting us dragged into conversations that are pointless about how one is less bad than another, even if it did work right, based on measures that don't mean anything and aren't accurate to how the condition works (if they are only measuring both short-term outcome and those who can complete)

Yet we get dragged into all this just to try and keep people safe from something that has already been signed off as unsafe being something people want to thing using a thesaurus will change everything for.

We surely need to focus on getting commissioning boards to have alternatives to choose from. And making sure the measures are clear: ones that meet the guidelines and cover more of the population, including the most severe over the lifetime vs someone actually doing short courses in any old thing, saying they are cheap.

 

The NHS is barely serving people with Cancer, we shouldn’t really be surprised. Someone asked me today- what Consultants are in my local clinic and if I could see them. I laughed! I don’t know where in the UK has consultants running ME clinics. Not anywhere I’ve lived.