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

I worry that this is treating still potentially the condition like it is managing 'something chronic' but without the illness part.

And potentially 'rehabbing without treatment first' which was what the flaw of the old guideline was and why it was so harmful. Like treating cancer with marathon running, without providing cancer treatment. Except noone would do a trial on that, even if it was/there were 'more chronic, less life-threatening cancers' of equivalent % to ME.

Where is the requirement for clinics to be overseeing people long-term and assessed basically on 5 and 10yr outcomes as the ones that matter. Again the flaw of the short-term mentality was what was picked up on in the assessment process undertaken for the new guideline.

We cannot have another set-up where it is based on people who are looked at on 6month bases and encouraged to disappear by the end of the year unless they are the few who happen to be saying the right things?

Even if there 'might' be an improvement by checking they do have ME (when describing the pitch for this) - but if the PEM survey isn't called PEM explicitly and therefore absolutely requiring only those who do have it to describe their 'PEM' and so many of these clinics who have said outright they are choosing to defy the guideline 'cos we treat cfs/me not me/cfs' but still have referral processes that ask for them to be referred they will just manipulate how they do it to sneak in those whose 'energy levels' have been 'chivvied' who had something else, anything else we take under the moniker of 'fatigue'.

Can these issues at least be tightened up.

 

my first concern is that for those who are severe, very severe and in a relapse then the questionnaire absolutely needs to begin from the principles of the length and specificity of the questions meaning noone is filling out any more questions than absolutely necessary. WHich I don't believe is the case yet.

I also agree with others who note that there is such a thing as gap analysis in research - and all sorts of debates about whether 'measuring the gap directly' is more accurate than 'measuring the start and finish'. (or ideal or expected and 'actual')

If you have things that are superfluous to the level you have an issue. But also for this circumstance then surely actually - certainly for GPs and I think this should be something that is also going to someone independent at the same time as clinics so they are being assessed and compared independently so I don't know why this can't be the case whether there is a service or not etc (particularly given so many services exclude those who become severe, but that doesn't mean patient orgs don't need to ask for such services and note the need for them to be provided) a much shorter version for such urgent referrals situations might better focus on that?

I don't know - are there others here who can map that question out mentally/model it/thought-experiment it too?

EDIT: And PS what is wrong with having fewer more specific questions and providing the 'tools' (via do at home tests being described for patient to build into their own estimate and frames of reference relevant to the severity - i think we do need adapted versions for different severity) to describe what goes into 'choosing whether it is 70% or 80%'? Because that would help educate anyone who is taking that survey and if it was 10mins long but something GP asked patient to bring back into an appointment for a referral then short enough for the GP to read the descriptive stuff to understand what those scores mean.

When you try and 'black box' that you are not only increasingly potentially error being multiplied (and only checking for internal consistency not external validity) but for an illness that needs people to be re-educated following misinformation for so many decades it is almost deliberately 'making mysterious' something which could be 'making straightforward and helping the penny-drop'. A GP knows why someone is saying they've gone from 70 to 80% more disabled (description says 'have you had changes to how long you can eg hold your arm or sit above horizontal' if you have a heart rate monitor do activities that used to not activate it now do so quickly? then 'frame of reference it' to the %: do you have less than eg 1hr a day being able to even sit rather than lie or recline reliably, are you struggling to brush you teeth on a regular basis and it can be enough to even on a good day cause PEM or fatiguability/put you backwards - I'm making it up but thinking of the plain speak terms).

It's a shame because turning it on its head could shorten in (certainly for repetitions), strengthen it, and make it into a communication tool that could be if done well transformative if it did this.

 

I think there are at least two different things happening with this issue and this thread.
1. The MEA have funded Tyson et al to do a piece of work, apparently in relation to a gap identified by the NICE guidelines (core data set? we aren’t sure) developing PROMS to be used in NHS ME clinics, and nobody is really clear about- why that’s needed, what’s it going to “do”, is the “clinical toolkit” side going to be “rehabilitation” in nature etc.

(edit - my screen froze!)

2. What WE, Science for ME want and need as ME treatment, from the NHS

Right now, the two are mutually exclusive, in my opinion.

 

Indeed. I am trying to work out whether the ends are just not meeting due to [EDIT: my] lack of vision and it needing tweaks, or really what this says it can do is potentially covering one thing at the expense of the most important thing?

Should this be called 'the clinic assessment questionnaire' if it is about clinics being assessed

And if it in the sense of eg a surgical or clinical medical centre then wouldn't that normally include all patients having to be covered forever and long-term morbidity and early death and declines etc. such as success rates for operations or treatments being based on how many live 5yrs+ and so on.

or a clinical assessment questionnaires would be about how best to clinically assess people and what would be needed as part of that (including when such assessments are needed and covering those circumstances etc)

I don't see how this can change to what is needed clinic-wise if effectively it is based around the wrong clinic model ie assuming milder short term rehab focus - and of course the vicious cycle of then data coming from it will only be including those for whom the poor treatment 'is stuck with' but that doesn't fit the needs of most so they don't continue or get discharged thereby skewing what it should be measuring: all, including those getting worse.

I'm looking for glimmers of light in what they are seeing in this eg with 'measuring PEM' in the way they are doing how will that be used to help progress patients long-term?

Which is different to perhaps measuring whether eg if they provided adjustments in home, work etc whether they had been successful in helping patients 'avoid PEM' - but can this questionnaire measure that and would it be misinterpreted or bundled in with other questions to one overall measure?

 

Measures of this sort can be used to assess whether a treatment known to be beneficial is being delivered reasonably well. That is all.

For a hip replacement there may be controlled trials showing that 80% more of a group of people treated can walk without pain than an appropriate control group. If your hospital has figures of 90% pain free walking then all well and good. If it is only 60% then the service needs review. There may be a legitimate reason, being a specialist centre that deals with complex cases, but that can be assessed.

In the current situation where there is no evidence that any one intervention or approach is better than another a questionnaire cannot tell us anything useful, except that maybe patients going to one clinic are happier than another, maybe because the sandwiches are better.

Whatever a questionnaire about symptoms might be useful for in recording symptoms as part of routine care there is no way it can be used as a bedrock for developing a service.

 

I feel like they aren’t being transparent. Because they’re not.

 

Thank you.

So the same fundamental error : not using or looking at long term outcomes, isn't what this is going to do well at all

And there is no back-up plan even realising that if you don't make clinics useful you are just using the Krypton Factor again to claim 'people have improved' when actually what you've shown is the few/ones who stayed to the end and provided their questionnaire are the ones who were least ill and happy to people-please. Which they interpret as 'if those who the clinic's treament was so useless they didn't continue had continued then they would have turned into these people who were milder in the first place'

It is a metaphorical but not different re-running of the PACE trial error where they are basically effectively not comparing like with like and almost ending up with those who were 'recovered on entry' as being the ones who get to the end - and as they are the only ones they happen to measure because of drop-outs...


The first thing I think that the ME Association needs to answer is: will any questionnaire be made sure to be something that is actually done independently of the clinics for proper follow-up whether people continued with the clinic or not at 1,2,3,5yrs?

Otherwise we will have the getting iller people off the books issue.

And then what is the data telling you about any clinic? nothing? just how ill the people they will serve are. BUt they will delude themselves that means something for all ME. CHange your sample change your 'results' will get cottoned onto fast/is the norm?

And after GET harming but all that stuff being really evident at 2yrs........ and it being underlined how important the longer-term and NOT short term (where people could be coerced and not feel the huge impacts yet) where is the plan that underlines how it will be making sure everyone is able to provide their updates 2yrs on and be counted? If a clinic is so bad they don't go that should count against them too.


This is starting to feel like one of those nightmares that you can't wake up from that keeps repeating.


I appreciate the sentiment is that they think they are doing something different but if you make a questionnaire only accessible to certain people then what you really are doing is gerrymandering the sample to get the results vs it being a useful questionnaire.

Then you add in those who are more severe and ill being able to answer all the ambiguous and over-done questions

 

and those are treatments of course. which have had proper trials in the first place/are known to be safe and have stats already for those who will go into them. so it is monitoring of the delivery of something known to work. with reasonable guidelines being followed for an actual treatment.

this is asking those with an illness to go into a clinic that doesn't provide treatment and wants to measure with what seem to be non-clinical tools ie not medicine but rehab.

if it was being treated like an ongoing illness then how people are would be focused on in a different way.

rehab without treatment again focus.

are they measuring PEM to claim that someone having to wreck their life to avoid it = 'PEM being cured'. It's nonsense. Dystopian stuff potentially if so.

and we have the inventor of it who abused with misogynist tropes that contribute to incitement to horrific treatment removing people's freedoms for harms and encouraging the general public to abuse, who wrote them down, and did it for no good reason other than what was going on for her that day I can only assume, is being allowed to get away with pretending she is the victim - no apology, no accountability, she has no dignity or self-respect for not apologising or explaining whether it is indeed because she actually believes all of those tropes.


What another twenty years of thinking what we deserve is this stitch up under an bunch of people who call us abusive names (yep that is an accurate term for someone who has levelled inaccurate tropes at a group) and they haven't checked aren't doing us harm, whilst everyone pretends they can't be that bad because if they close their eyes they can claim they didn't intend to cause all the harm by repeating something that has harmed?


Where is the ME Association's evidence to all of this evidence (of it being exactly the same down to the nasty name-calling before anything has even begun to put anyone off opening their mouths, and make sure our testimony is blackened dare we do so) that anything is any different to them (or being a useful idiot to enable someone else) re-instituting the exact same regime they apparently helped to unpick?

 

Even down to a man [from the MEA] kindly writing that aren't they being generous picking through with her to help her to decide which comments they deem 'constructive' after words that were coercive to ensure noone felt comfortable replying, nevermind the "shut the heck up if you are even thinking of criticising this, I will think you are ?@**@ " tropes.

What sort of researcher gerrymanders replies using abuse then then gets away with persuading their funder, responsible for those who have just had said words levied at them, that it's still research if they pick and choose which of the few comments anyone still dared to leave they might choose to and cherry-pick to digest and accept?


Where is the acknowledgement that behaviour like that and the words not even being required to be apologised for has a direct line to the abuse and mistreatment currently seriously affecting the health of some patients in hospital ?

Because there is. Any person not even corrected and educated when they do this publicly tells anyone who fancies doing the same: that is fine and 'carry on'. And of course because we were all mannered, that you get a nice break from work that real researchers who don't pull those tricks wouldn't have - what sort of feedback mechanism is that supposed to be when someone is allowed a hissy fit to scare off responses and then still claim the same deadline and no change to oversight?

Instead of 'why are you not embarrassed for yourself, but even if you are not you are affecting our values so acknowledgement and apology is the least required before we even contemplate your future' just the message that it works very nicely thank you to make sure that you get exactly what you want on the results of your 'research' if you scare off anyone from being permitted from saying anything and pretend to be angry for attention and getting your own way (and yes.. I know those who can't control their temper tend to learn this and admit they then learn to use it as a tool whether they were angry or not to scare people into not objecting to them/asking them to do something/getting their own way).

And yes, I'm allowed to say this, even that last line about it perhaps being a tactic it is just as likely true unlike her tropes and unlike other nonsense pretend misogynising/pseudophyschologising , we have the writing of it, we have the lead up to it, and we provided well over a month of space for her to be a decent human being and step back on acknowledge how awful what she said was and provide an explanation if there was one. What I'm saying is factual: she was name-calling and troping in ways she is more than positioned to know the huge impacts of, and 'saying what that is' in plain factual terms is exactly the right, nice, mannered and appropriate thing for a bystander to do.

At that point it is warranted/the norm to assume that it is because there is not one (an explanation or a realisation)/ it was intended as written?

And the ME Association has just validated that as OK as a behaviour and OK as a way to interfere with a research method? And OK at a point where the horrific type of flase beliefs and related behaviours these tropes incite, justify, and encourage are publicly being suffered by some incredibly ill ME patients?

 

That's interesting, because I've been wondering if one specific thing could potentially be assessed: the quality, clarity and usability of pacing and management advice given to newly-diagnosed patients.

I've had briefings on everything from post-operative care to using mobility aids to physiotherapy after injuries, and the quality varies enormously depending on which individual gives it. This becomes particularly obvious if you overhear the same briefing being given to another patient whilst you're waiting for yours.

The passing on of information and advice to new patients is so important that maybe it could usefully be assessed. It would need a different approach, of course—starting with being honest about what is being assessed and why—but if the objective is better, clearer communication with patients, might it be a legitimate project for an ME charity?

 

I was rooting around the published accounts, I see the MeA also employed an additional short term employee to “embed” the 2021 NICE guideance
Edit- I can’t find that reference now

https://register-of-charities.charitycommission.gov.uk/charity-search?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=2&p_p_state=maximized&p_p_mode=view&p_p_resource_id=/accounts-resource&p_p_cacheability=cacheLevelPage&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_objectiveId=A13988465&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_priv_r_p_mvcRenderCommandName=/full-print&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_priv_r_p_organisationNumber=801279

 

Somewhere in the NHS PROMS info, they said the data identified recovery time was quicker where a certain brand of replacement hip was used, so then other clinics changed to that brand.
Still sounds a bit more “work appraisal” than “biomedical science”to me.

 

THIS

(@bobbler, I wish I could triple-like that whole post)

 

I think that could be feasible. But then of course it would be a matter of comparison - whether centre X patients proved to have got a clearer message than centre Y patients. That has nothing much to do with developing service except in the sense that it could drive quality control.

The difficulty I see is in knowing how to interpret the results in a way to improve delivery. When I was explaining what RA was to patients I used very different strategies for different people, often depending a lot on how they framed questions and what it seems they wanted to know or in what framework they felt comfortable to understand it. People differ hugely on that. I may not have achieved what I hope. It would have been interesting to see how many of my patients understood what I was saying.

 

From the document you posted.

 

And some wonder why many of us have lost faith with the MEA (and other charities)..

 

Hmm, I've found this from GLadwell and others on Full article: Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome (tandfonline.com)

It says it was submitted Oct 2022. I'm assuming it is the same one you've referenced here.

I'm looking for the ethics statement to see when this (released in 2023) project was planned, but I'm realising from another thread where he critiqued the CFQ and suggests PROMS is the obvious solution ... that this goes potentially back to way before the new guideline

I found the ethics statement from the following paper: Trial Report - Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell | Science for ME (s4me.info)

and it tracks back to them having applied for ethics in Jan 2018. The data was collected before lockdowns curtailed their interviewing. So before the new guideline, and certainly any implementation groups.


ie it looks like Gladwell and others were planning to do these PROMS from way before any Nice guideline ?

 

OK @Maat I have just found the thread for the one released in 2023 that was on PROMs and included Gladwell.

Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS, 2023, Jones, Gladwell | Science for ME (s4me.info)


The thread is helpful because it seems my comment was first up and I'd managed to find the ethics statement:

So approved prior to 2016!!! but no more detail because they reckon that despite it being published in 2023 that means their data isn't subject to GDPR.

I put in that thread (and think it still stands):
So much wrong with this. Made worse by insisting on including it despite really not being GDPR compliant and then using the GDPR legislation to make it non-transparent and non-checkable for fraud given the PACE debacle is I think something for ME/CFS should no longer be allowed.


As an important ethics/side issue: Can someone who is important please look into their GDPR/ethics claim here: from what I understand of GDPR this is outrageous.



Secondly, for this to be correct (where apparently they completed the work before GDPR came in so can use it but had to destroy the raw data) then the complete analysis after data collection must have been done before 2016.

So why is the paper being released in 2023??

And how far back does this really go date-wise with these PROMS???

 

And they've claimed the same thing in this paper that they claimed in the one on the other thread (2024):

"Participants were a cohort of patients attending their first appointment at a specialist ME/CFS service in an NHS Trust. This service provides assessment by a specialist clinician to diagnose ME/CFS where patients’ experiences met both the Fukuda and the 2007 NICE Guideline criteria [Citation18,Citation19], ensuring that post-exertional malaise was a required element of the diagnostic criteria. "

The exact. same. line! except here they are inferring that this means their sample has external validity - by saying 'PEM was a required element of the diagnostic criteria'

...and yet the recruitment of these individuals must have been at least a year before 2016 for everything to have been collected and analysed before then... to have claimed compliance they would have had to have actually destroyed those old stored records.

so are we talking 2015? or 2014?

that the idea of this being done and was applied for etc tracks back to. WHich would be before the IOM paper...


It does feel like this project and that paper from back to maybe as far as that date aren't unconnected given the author list and the following quote from the paper:

"This provides an opportunity to benchmark the PROMs used by many ME/CFS services nationally to evaluate the extent to which they capture patients’ experiences of disability. As a precedent, this benchmarking has been done with other measures of participation used for a wide range of other health conditions [Citation13]. PROMs that accurately capture patients’ experiences of functional disability will also help to evaluate effective treatment strategies for the condition. Additionally, this knowledge can help services to make informed choices around service provision and treatment efficacy. Because many ME/CFS services use the same PROMs, the findings of this study have implications for wider clinical assessment across ME/CFS services in the U.K."

 

OK I'm chipping away at reading through this in more detail. I can see exactly what you mean about patterns emerging. And it is interesting to note that whilst PACE trial was going on there was also a concurrent trial from Crawley and White which they (I assume chose to delay) didn't publish until 2013. And the erratum was only pubished in 2020 (astounding really, and then took a heck of a lot of clicking to finally be able to see it and the wording was impenetrable and very dog ate my homework inferring they probably did have ethics approval)

I note for this the conclusion in their abstract is 'interesting':
"Conclusions
Patients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function. Outcomes were predicted by fatigue, disability and pain at assessment."

And here is the full conclusion from the paper, which is even more 'flagging' of whether PACE outcome is correct (my bolding)?

"Conclusions

Although NHS services are moderately effective in improving fatigue in patients with chronic fatigue syndrome, they are much less effective in improving physical function than similar treatments delivered in the PACE trial. This requires urgent investigation to determine whether it is due to differences in the delivery or the content of treatments offered by services. Future research also needs to include patient-level treatment data to investigate variations in outcome that may be related to treatment data. We did not find that depression, anxiety or duration of illness at assessment predicted outcome. Clinicians providing assessments should not assume that co-morbid mood disorders or length of illness are predictors of outcome."


I wonder whether (sorry if you already pasted it) the following article from MEA that does include Gladwell among others adds some interesting context - it is from 'just before' the PACE results were published and talks of how Nice is minded to review its guidelines based on a recent consultation... but is waiting on the results of the PACE trial first. Physiotherapy journal urges gentle approach to prescribed exercise for people with ME - 19 January 2011 - The ME Association

The part with Gladwell is:
"Supplement guidelines

Pete Gladwell, clinical specialist physiotherapist at the Frenchay Hospital CFS/ME service, Bristol, says: ‘I would encourage all physiotherapists to have a broad understanding of the illness before trying to introduce graded exercise therapy as a strategy or a stand-alone treatment. They should supplement the clinical guidelines with other resources.’ Mr Gladwell suggests seeking advice or training from the nearest specialist CFS centre and patient groups such as Action for ME, which has a pacing guide and a directory of CFS/ME services. Training is also available from BACME (the association of healthcare professionals working in CFS/ME).

He advocates an approach combining graded exercise therapy with pacing, which is the model used at Frenchay and other CFS/ME centres. ‘We help patients to pace themselves, then gradually build up exercises through goal setting, but with a plan for relapse if need be. It seems that when people have had a poor experience of graded exercise therapy they felt they hadn’t had permission to step back,’ he says. There is also an emphasis on self-management incorporating the principles of cognitive behavioural therapy.

He adds that, while the results of the patient group surveys seem dispiriting, because they question the effectiveness of treatment as delivered, ‘the experiences of patients who feel much worse following the exercise interventions which are reported in these surveys do need to be taken seriously. Exploring what they are saying should help us to improve care.’ fl"