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

MrMagoo said:
Well how about they check up on us every year, once a year, say for 5 years?
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Indeed - those first years would be interesting to know. But as long as, as per Nice, they are only using the longer years as the measure of if it’s working (and clinics weee told people would get to submit whatever ie no ‘they are a drop out’ fudge) then I think it would transform treatment the right way - because clinics would focus on what would mean people were more well in 3-5yrs time.

and this clinics claiming they believe forcing people to push through is what will do that, well I betcha if they were being measured on that 3,4,5 years wellness and employment couldn’t cheat it and were getting their gold stars on that … they mightnt change their spiel but they would probably suddenly be behind getting adjustment short term as they know the score on the door will be the 3yr mark.

Cynical, moi? Maybe more Tricky for those who currently work ‘with employers’ using things like CBT and ‘manage em back to work’ (or is it potentially’out the door’ cos currently you claim of CBT didn’t work they didn’t try vs offering part time option that might happen in other conditions) ? Or is that actually what most employers wanted anyway so it’s just been this weird supply-led thing?
 
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Trish said:
Getting back to the topic of this thread, has anyone had their two weeks later invitation to fill in the activities questionnaire again? I haven't and I'm sure it's more than 2 weeks.
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I had a quick look on the MEA Facebook page and struggled to find info - its a real mishmash ( but that might just be facebook's way of prioritising info) . Can't see anything other than posts re previous,questionnaire and people having difficulty completing it. @NelliePledge may be able to fathom it out better than I as she seems to be able to navigate MEA info.
 
ETA: Sorry, I started writing this some time ago in response to earlier posts, but it looks well out of sequence now!

bobbler said:
I think measuring 3yr + outcome as the measure is key with whether adjustments were made in that interim time being the independent variable (reduce hours early enough they mightnt get as disabled)
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I agree very much with the approach, but for the moment all we have are these short-term management courses. There don't seem to be any plans to monitor people beyond that.

Given that all a well-intentioned clinic can offer as a management strategy is pacing, perhaps the outcome measure to look at is simply the frequency and severity of PEM?

If I were new to ME, a clinic could help me learn what the cardinal symptoms of PEM are in my case, and how to work out how bad it is. I could begin recording it, so that over a number of months it would reveal how well I was pacing. If I got better at it (less PEM), or worked out what was stopping me getting better at it (having to work more hours that I'm capable of), it would be reasonable to infer that the clinic had helped me. It doesn't need a huge questionnaire, but it does need daily scores to be recorded weekly by the clinic to show the trajectory.

Since managing ME well basically means managing PEM well, that would be a useful PROM, wouldn't it? It's as accurate as it's possible to get, and it's honest about what can be offered.

The shame of all this is that these clinics could be doing good work if they were allowed to be honest. Teaching pacing is enormously valuable. Helping people realise that some of the hygiene standards they grew up with only came about because of manipulative advertising = enormously valuable. Helping them find ways to let go of guilt about the things they can't do = enormously valuable.
 
Kitty said:
Since managing ME well basically means managing PEM well, that would be a useful PROM, wouldn't it? It's as accurate as it's possible to get, and it's honest about what can be offered.
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I don't think recording the dates and severity of episodes of PEM would count as a PROM of the sort we are used to where questionnaires are filled in at single time points based on recall over the last month or whatever time period specified.
Does a daily diary/app record of activity, symptoms and episodes of PEM count as a PROM?

I agree that frequency and severity of episodes of PEM, along with overall changes in severity of symptoms and activity levels are useful for self monitoring. Not so sure about using them to judge effectiveness of clinic pacing programs.

For many of us, life circumstances are a large part of dictating how often we get PEM, and how severe it is, and life circumstances change in ways usually unrelated to participation in clinic programs. For example: working and crashing a lot - get sicker and no longer able to work - give up work, still sicker but crashing less. So less PEM but sicker.
 
Trish said:
Does a daily diary/app record of activity, symptoms and episodes of PEM count as a PROM?
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I don't know, but the point is that it should. PEM is what matters in ME, so that is what should be measured, assessed, or whatever.

New patients need to understand PEM, and gain a picture of what factors (including the self-imposed ones we all tend to start with) are pressures on their energy capacity. Then they need to work out which of them they can actually influence, first of all in the short term, and then in the future through planning.

I'd say a good understanding of all that is a measure of clinical effectiveness—in a sense it has to be, because it's all the clinics have got to offer.
 
Kitty said:
I don't know, but the point is that it should. PEM is what matters in ME, so that is what should be measured, assessed, or whatever.

New patients need to understand PEM, and gain a picture of what factors (including the self-imposed ones we all tend to start with) are pressures on their energy capacity. Then they need to work out which of them they can actually influence, first of all in the short term, and then in the future through planning.

I'd say a good understanding of all that is a measure of clinical effectiveness—in a sense it has to be, because it's all the clinics have got to offer.
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I certainly agree that if a clinic does anything useful that affects the person's health in a positive way, it is educating them about PEM, and I mean specifically the delayed significant increase in symptoms and reduction in function that lasts more than a day, not 'symptoms after exertion'.

I'm just not sure how you 'measure' the effectiveness of that education.

I don't think PEM can be 'measured' as a single numerical score, because it's multifacted. How do you score duration, frequency, additional symptoms, loss of function, cumulative exertion that triggers it etc. Do you add up numbers of symptoms and their severity scores, amount of activity that triggered it, duration in hours/days of PEM episode, multiply that by the number of episodes in a year/month? and add the number you first thought of?

My point is that I think the best way clinics can help is a combination of symptomatic treatments, education about pacing, help with employers/schools/benefits applications, help with aids and home and work adaptations, and provision of aids to pacing such as wearables, apps, diaries, whichever suits the individual best, with help learning to use them. And home based specialist help for severe/very severe pwME.

I can't see any place for questionnaires/PROMs in any of that, apart from possibly a service evaluation that enables pwME to quickly feed back whether they are getting the services they need in a accessible and appropriate form.
 
Trish said:
I certainly agree that if a clinic does anything useful that affects the person's health in a positive way, it is educating them about PEM, and I mean specifically the delayed significant increase in symptoms and reduction in function that lasts more than a day, not 'symptoms after exertion'.

I'm just not sure how you 'measure' the effectiveness of that education.

I don't think PEM can be 'measured' as a single numerical score, because it's multifacted. How do you score duration, frequency, additional symptoms, loss of function, cumulative exertion that triggers it etc. Do you add up numbers of symptoms and their severity scores, amount of activity that triggered it, duration in hours/days of PEM episode, multiply that by the number of episodes in a year/month? and add the number you first thought of?

My point is that I think the best way clinics can help is a combination of symptomatic treatments, education about pacing, help with employers/schools/benefits applications, help with aids and home and work adaptations, and provision of aids to pacing such as wearables, apps, diaries, whichever suits the individual best, with help learning to use them. And home based specialist help for severe/very severe pwME.

I can't see any place for questionnaires/PROMs in any of that, apart from possibly a service evaluation that enables pwME to quickly feed back whether they are getting the services they need in a accessible and appropriate form.
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And you’ve just reminded me of the whole ‘frames of reference issue’ that the MS paper @Hutan linked to earlier on in this thread lists.

using subjective measures from exhausted people made more exhausted by having to fill in a questionnaire not designed to be unumbigious and easy is a real problem - whatever is in it

because we all just get used to our disability and adjust how we do things further even if we are going down.

Without objective measures to triangulate for this you’ve issues of influence at it being a pointless measure of what you claim to measure and possible to be ‘gamed’ by coercion (you’ve got the tools, let’s see you progress) or geeing up (‘I think you are walking better, how great do you look’, I think that’s a step forward from how you were describing it last time maybe it’s just your confidence making you think you are managing worse etc)

and worse this way of claiming to measure activity has less chance than even apps if incorporating total exertion (it’s not just activity) and the condition is your threshold ie how much you can do before being unwell / get PEM which will be influenced by things not in that sheet eg medical apts or if you had noisy neighbours or had to care for someone for a month as they’d had a fall or whatnot.
 
Kitty said:
I don't know, but the point is that it should. PEM is what matters in ME, so that is what should be measured, assessed, or whatever.

New patients need to understand PEM, and gain a picture of what factors (including the self-imposed ones we all tend to start with) are pressures on their energy capacity. Then they need to work out which of them they can actually influence, first of all in the short term, and then in the future through planning.

I'd say a good understanding of all that is a measure of clinical effectiveness—in a sense it has to be, because it's all the clinics have got to offer.
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Here’s the issue with clinics not even having been changed to new guidelines

Or is it based on funding limitations the most we can expect is a short course with no letters sent to make pacing actually more possible

why is ME not just getting a ‘hiw were people at 3yrs’ vs other proper medical conditions

it’s rhetorical and we know why but it’s significant.

there is another thread where I’ve noted that even with better ‘advice’ the real gap is those under a certain age certainly have not enough control fir all that advice to not be almost as bad as useless CBT ‘if you only behaved this way you’d be ok’ whilst they are not supported to be able to do any changes to school or jobs that meant it was anything other than a lecture about how if they change their life…. Without leeway so that’s possible or a liveable life.

and it’s exactly the same as in @Jonathan Edwards nice statement I think it where he notes that the lecture can be effective in changing someone’s mindset and behaviour and yet not make them more well (the real measure needed)

advice without support eg as a kid forced to do x hours at school or someone young with no back up unable to get adjustments at work and extra energy due to management processes involved there - it’s cruel, and like giving another disease a lecture on how a medication will help without providing said medication

the way the disease works mean you measure outcomes at 3yrs. Just because these people want to do a short course and base measures around that doesn’t mean it’s not incorrect. And means nothing

the main thing for those courses is that independently administered follow-up happens at 3yrs whether someone’s been ‘dropped out’ or not and a survey as any other service would saying ‘was it any good and compliant’ ‘did it offer these categories of support’

I know they’d love to have a league table of who delivered a barely useful course nicely then do measures at the end but how is that medicine and it just allows for change not to be nudged to what is needed because what is measured is what is the limit of what is done.
 
I was wondering if post election we ask a parliamentary question re how these interventions are being evaluated; in particular are real world outcomes, such as ability to participate in education and work monitored, e.g. up to 5 years post treatment?
I recall @Jonathan Edwards saying that having specialist clinics enabled him to make progress in autoimmune arthritis - therefore, there may be some benefits in this "service". However, not much point in people being deflected into a useless service - we need meaningful interventions. Thoughts?
 
FMMM1 said:
I was wondering if post election we ask a parliamentary question re how these interventions are being evaluated; in particular are real world outcomes, such as ability to participate in education and work monitored, e.g. up to 5 years post treatment?
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Good idea—maybe we could ask for it to go into the action plan, or whatever it was called?

It's not difficult to do, especially if a simple pre-illness history is captured at diagnosis. Reviews like that could be done by phone for people who're able to use voice calls, or online.

We might be able to work up some suggestions for pre-illness questions here if people like the idea.
 
Kitty said:
Good idea—maybe we could ask for it to go into the action plan, or whatever it was called?

It's not difficult to do, especially if a simple pre-illness history is captured at diagnosis. Reviews like that could be done by phone for people who're able to use voice calls, or online.

We might be able to work up some suggestions for pre-illness questions here if people like the idea.
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Sounds like a good idea. I attend these meetings - https://worldmealliance.org/2023/08...ied-in-support-of-nice-2021-me-cfs-guideline/
Simon Chandler also attends (representing Forward ME who in turn represent Action for M.E.*) I can try to discuss after one of the meetings.

@MrMagoo thanks for the link -
https://www.actionforme.org.uk/rese...n 12 May, World ME,devolved nations of the UK

*Action for M.E. is an active member of Forward-ME
 
The answer to any Parliamentary Question is simple. It was a project involving people with ME and funded by the ME Association. What politician is going to question that.

There will be soooooo many issues across the board to address in the new Parliament. This level of detail is too low to register

As far as engaging with politicians goes the focus should in my opinion be
on educating them about ME
asking them to be involved in a new APPG and understanding that the delivery plan has some positive aspects but at best can be described as a bare minimum product.
 
I think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics discharge patients back to GP within a year or less, we’d like to see long-tm updates, data etc.
 
MrMagoo said:
I think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics discharge patients back to GP within a year or less, we’d like to see long-tm updates, data etc.
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Definitely. It should be the only monitoring that counts. Particularly until we ever get past the phase where treatments and measures that can use coercion or encouragement to produce 'short term bumps that cause long-term iller health' are the norm. No measure that is less than 3yrs should be submittable for claims of 'improvement'.

And it would be ridiculous after the findings during the analysis for the Nice guidelines that showed how flawed those short-term findings were... and to use longest-term measures... if research was not required to include at least 3yr, but I agree it should then be 5 and 10yr follow-up in order to be able to claim anything
 
MrMagoo said:
I think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics discharge patients back to GP within a year or less, we’d like to see long-tm updates, data etc.
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The PACE study did do some longer term follow up. If my memory is correct wasn’t there a two year follow up, and didn’t they start the ten year follow up, however I don’t know how far they got with that.

One of the problems with the 2 year? follow up reporting was the researchers claim that many of the control group went on to do CBT/GET after the completion of the study.
 
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