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

Trish said:
I don't understand how this can distinguish between people remembering what they did before and doing the same again, and the reality of whether symptoms have stayed the same or not.


So have I got this right. They start by asking a simple question about whether your symptoms have changed, then you fill in a lengthy questionnaire so they can see if it gets the same answer.
So why not just have a questionnaire that asks have your symptoms changed, if so in which direction, and are they fluctuating? A 1 minute questionnaire instead of a 15 minute questionnaire?

It reminds me of anxiety and depression questionnaires - why not just ask the patient if they are anxious or depressed?
Why all the rest of it?
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Bit like that weird "forensic" paper we saw the other day. There is still this idea that they can catch people contradicting themselves and that it means something. And this is from the ME Association so it's not even antagonistic, but the idea that catching people in a contradiction is meaningful, I guess. Even in a fluctuating illness. Even in an illness defined by being wildly fluctuating.

Because this is basically how researchers "validate" questionnaires, and clinicians validate the reliability of patients' responses. Which ironically is not a valid way of validating things. It could be significant to get the same answer multiple times using some instrument. It's what you expect of a measure. But 15C is 15C, it doesn't change, so it shouldn't change upon measure. But they're not measuring something fixed. Subjecting well-being, symptoms and so on aren't meant to be consistent, but the underlying idea that the only valid way of assessing is if it gives the same answer multiple times. Even in an illness defined by being wildly fluctuating. Even from people who should know better.

There's just no plan B, no psychological or cognitive flexibility built into how health care works. They work more from tradition and rote, dismissing the very kind of flexibility that is the basis of true intelligence.
 
I can actually see a use for a measure. Keeping a score from week to week might help more recently diagnosed people work out whether they're on an upward, downward or even trend.

It can be hard to get a sense of this because the data are so noisy. Bouts of PEM, coughs and colds, hormonal shifts, IBS flares, stressful events, the onset of hay fever...there are all sorts of things that can make people feel worse than usual, but they don't necessarily tell them what they need to know: whether or not their current activity levels are sustainable.

A simple score out of 5 or 10 for physical and cognitive function would suffice, though, it doesn't need an extensive questionnaire.
 
I think it's worth going back to the initial article by the MEA describing this project:
https://meassociation.org.uk/2023/0...nt-toolkit-in-nhs-me-cfs-specialist-services/
ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services
May 8, 2023
“I am delighted to have received this grant from the ME Association and look forward to working with the team, with people with ME/CFS, and with clinicians to co-produce a clinical assessment toolkit.
“The tools will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”
Professor Sarah Tyson, University of Manchester
APPLY TO BE PART OF THE STUDY
The study will also consider whether the toolkit can be applied to people with Long Covid who might be referred to combined NHS ME/CFS and Long Covid specialist services – such as in the Isle of Man – or to NHS Long Covid Clinics – such as in England.
The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services.
The researchers undertook extensive work in preparation of the grant application. Using recent national guidance, they established the concepts to be measured and completed scoping reviews to identify any existing measurement tools. While these revealed that nothing suitable currently existed for ME/CFS several were found that could be developed.
The implementation of effective PROMs in other medical conditions has shown an improved understanding of patient problems, better monitoring, more effective decision-making, and improved communication. To achieve this, PROMs need to be carefully developed to ensure the content covers the full range of symptoms and disabilities, are easy to use, and produce accurate and useful information.
The toolkit will address the assessment needs and research recommendations (for a core outcomes database) identified in the 2021 NICE Clinical Guideline on ME/CFS. It will be produced following consultation with patients and with clinicians to ensure the toolkit can record accurate and reliable data. Then it will be made available to the network of services in England and in Northern Ireland, Scotland, and Wales, when new specialist services are commissioned.
The main outcome from this research will be a clinical toolkit and a greater understanding of patient difficulties, their needs, and satisfaction with service provision, along with a better appreciation of the assessment challenges that clinicians working in specialist services face and how they might be overcome.
Application of the toolkit will be of benefit to patients, to clinicians who are tasked with providing tailored care and support, and to healthcare commissioners who want to review and improve existing service provision – or create new services – that adopts the NICE Guideline recommendations.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
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It is clear from this that the aim is not just to produce an efficient way of patients noting key aspects of their current health in order to facilitate more productive medical consultations, but is also intended to 'measure' and provide records of 'accurate data' that can be used for service evaluation.

Given that emphasis on measuring and data, there is presumably the intention that PASS will provide a number that is supposed to measure a patient's PEM over the last month.

To me that is meaningless. What is it measuring - time lapsed from triggering exertion, duration, frequency of episodes of PEM, how much exertion triggers PEM episodes? How many symptoms get worse in PEM, how many new symptoms arise just in PEM, how severe they are, how much more debilitated is the pwME during PEM, what is their severity level during PEM?. Is this to be recorded as a single number? If so, how is it calculated - additive, multiplicative, weighted...? And how do you interpret that number?

And that's before we get started with all the other problems with PASS that we have spelled out already, including the muddling together of fatiguabilty and PEM.

PEM isn't a symptom, it's a phenomenon of becoming much sicker for days or longer.
 
Trish said:
And how do you interpret that number?
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I'm not sure you do. I suspect it's not for you, it's to justify the existence of a service.

If it were for you, you wouldn't need a questionnaire. You could scribble a PEM score out of 10 on a calendar every day, and that would tell you whether you have more or less than a month ago.

It'd still be fairly useless in practical terms unless you'd experienced a change in severity and needed to reassess your physical and cognitive capacity, but I don't see why it would be any less accurate.
 
The aim of the study is to produce a "clinical assessment toolkit", one that can be used in clinical care, but also in the evaluation of both existing and new services.
Application of the toolkit will be of benefit to patients, to clinicians who are tasked with providing tailored care and support, and to healthcare commissioners who want to review and improve existing service provision – or create new services – that adopts the NICE Guideline recommendations.
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And yet, Sarah Tyson seems to refuse to accept that objective measures need to be a core part of the clinical assessment toolkit. Perhaps it is because she finds working with wearable technology difficult? Perhaps it is because she truly feels that subjective outcomes are all that are needed to assess outcomes in clinical situations where the patient desperately wants to believe that they have improved, and where the clinician wants to believe that they have helped and desperately wants to show that their service is useful so that they continue to be funded.

Peter Gladwell of BACME, a co-investigator, must be thrilled at the prospect of MEA endorsed subjective outcomes "co-produced" with people with ME/CFS. Gladwell is also on the Cochrane IAG. Here's his biography from there (apologies if this has already been posted on this thread). Note that he prefers the name CFS/ME and does not mention his BACME involvement.
Pete is a Clinical Specialist Physiotherapist in the Bristol Chronic Fatigue Syndrome/ME Service and team lead. He also works in the North Bristol NHS Trust Pain Management Service. Pete’s clinical roles have included Pain Management Programmes and co-delivery with lay tutors. He has been involved with individual rehabilitation and group treatment in the Bristol CFS/ME Service since 2004. Pete also has a longstanding involvement with the Physiotherapy Pain Association, in the Chartered Society of Physiotherapy, collaborated extensively with Action for ME, and has co-authored a report on the Action for ME 2010 rehabilitation survey. Pete’s PhD investigated the use of TENS devices by people with chronic musculoskeletal pain. He supports undergraduate physiotherapy education about CFS/ME, and is also involved in the delivery of the Masters level fatigue course at the University of the West of England.
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Here's his bio from 'The Mindfulness Network':
Dr. Peter Gladwell is a Physiotherapist and Bristol ME service lead. A senior clinician within the Bristol ME service with over 25 years of experience working within fatigue services, he trained with the CMRP CPD route to mindfulness teaching and is involved nationally in developing good practices in ME services. He is a trustee of BACME (British Association of Clinicians in ME/CFS) and has been involved in therapist training for many years. He also has his own long-standing meditation practice.
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I think that the MEA may be walking into a trap of ending up endorsing PROMS that will be used against the ME/CFS community. We've seen similar things happen before:
The PACE trial paper said:
Because this treatment had not been described in a manual, we created and piloted manuals for therapists and patients on the basis of previous descriptions,13,17 what pilot patients and clinicians reported as helpful, and with the advice of experienced therapists. Westcare and Action for ME helped in the design of the therapy and endorsed the final manuals.18
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People at the MEA seem to have forgotten that objective outcomes are our strongest defence against services and interventions that don't work.

(sorry, edits to add more info on Gladwell)
 
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As a reminder of what Peter Gladwell's years of providing care to people with ME/CFS have led him to believe about good clinical services, the AfME Pacing booklet provides a good insight. 'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

In that thread, MEMarge notes that the Bristol Service that Gladwell has been associated with since 2004 did not seem to be getting rave reviews from people reporting on their experience in an MEAction survey.
MEMarge said:
The MEAction survey shows results for the individual clinics.

The Bristol Service for adults had one of the largest responses (alongside Sheffield).

https://y9ukb3xpraw1vtswp2e7ia6u-wp...-ME-services-Survey-report-by-MEAction-UK.pdf Page 51

Responses show: ONE person got much better, 12 were slightly better
27 were neither better nor worse
11 were slightly worse and 23 were VERY MUCH WORSE
after attending the clinic!!!
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In my experience as a clinician, outcome measures never provided a basis for assessment of service provision. Maybe they should but I find it hard to see how it could have been organised. What happened was that there was properly controlled trials of treatments and those treatments that were found to be beneficial were offered to patients. Nobody expected to be able to tell from outcome measures whether a clinic was functioning well because there were no control observations to allow outcomes to be interpreted.

Surgeons have for a long time had their practice assessed with outcome measures. That makes sense since there have been in the past obvious differences in technical competence and post-operative care quality. But it has still always been a matter of identifying serious outliers.

Recently we have seen service evaluations of things like IAPT psychotherapy and noted how hopeless it is.

I worry if these measures are supposed to be for that purpose because I cannot see any way that they can be made sense of without any control observations - in fact without any well designed trials showing efficacy.
 
Jonathan Edwards said:
In my experience as a clinician, outcome measures never provided a basis for assessment of service provision. Maybe they should but I find it hard to see how it could have been organised. What happened was that there was properly controlled trials of treatments and those treatments that were found to be beneficial were offered to patients.
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I wonder if the difference is that there aren't any treatments or drug trials, and nobody really knows how to go about delivering these services? I suspect in some respects it's not even clear what they're for, beyond initial diagnosis and offering management advice to new patients. There don't appear to be any doctors involved.

If it is that kind of model, which possibly has more in common with an alternative therapy centre than a hospital outpatient clinic, maybe it's part of the reason for wanting 'service evaluation'.
 
Kitty said:
If it is that kind of model, which possibly has more in common with an alternative therapy centre than a hospital outpatient clinic, maybe it's part of the reason for wanting 'service evaluation'.
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I think so I am afraid.

For a rheumatoid clinic service evaluation must be easy:

Expenditure £4,765,000
Of which: Drug budget £2,210,000 (controlled trial based, NICE approved - tick)
Physicians to prescribe drugs £650,000 (NICE approved - tick)
Orthopaedic surgical referrals £1,300,000 (trial based, NICE approved - tick)
Laboratory investigations....

Tick.
Carry on guys.

ME clinical service:

Expenditure £2,400,000

Staff for providing a care plan? £2,400,000
Could we manage with a bit less? Does the care plan do any good?
Er, um.

There is a problem but not one solved by PROMS. It is solved by a realistic understanding of the need to provide people with advice and support. Replacing that with an artificial case based on PROMS seems to me very dangerous. We need care to be based on a realistic understanding of the need for advice and support. That is what we based rheumatoid clinic funding on in 1975 and that also allowed us to make progress.
 
I contacted the ME Association over Sarah Tyson's unprofessional and abusive attitude and comments made in this thread 18 days ago. Over the course of a week's exchange of emails, they chose to focus on the difference of opinions over the value of this project, and even went so far as to repeatedly suggest that someone from the forum "provide a short summary of the main concerns and objections to the questionnaire that your members have been raising".

I had to push for them to acknowledge that these kinds of insults
sarahtyson said:
Instead, I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved.
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might be something that they might have to address.

My last communication with them was on the 1st March, where they indicated that they were taking the matter forward - since then I have heard nothing more. Given that silence from them, I can therefore only assume that the ME Association condone or otherwise believe that Sarah Tyson's comments were justified. I am beyond disappointed with them.
 
Andy said:
even went so far as to repeatedly suggest that someone from the forum "provide a short summary of the main concerns and objections to the questionnaire that your members have been raising".
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But if we had indulged in "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults", wouldn't we edit the worst bits out?

Investigations of behaviour look at what happened and in what context, and it's unusually easy in this case. There's no need for witness accounts, every word's available to read.
 
Kitty said:
But if we had indulged in "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults", wouldn't we edit the worst bits out?

Investigations of behaviour look at what happened and in what context, and it's unusually easy in this case. There's no need for witness accounts, every word's available to read.
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They obviously didn't want to address the behaviour and wanted to focus on the disagreements about the project - it was a deliberate re-focus.
 
Andy said:
I contacted the ME Association over Sarah Tyson's unprofessional and abusive attitude and comments made in this thread 18 days ago. Over the course of a week's exchange of emails, they chose to focus on the difference of opinions over the value of this project, and even went so far as to repeatedly suggest that someone from the forum "provide a short summary of the main concerns and objections to the questionnaire that your members have been raising".

I had to push for them to acknowledge that these kinds of insults

might be something that they might have to address.

My last communication with them was on the 1st March, where they indicated that they were taking the matter forward - since then I have heard nothing more. Given that silence from them, I can therefore only assume that the ME Association condone or otherwise believe that Sarah Tyson's comments were justified. I am beyond disappointed with them.
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Thank you @Andy for raising this with the MEA, I had foolishly assumed that Sarah Tyson would have returned to try to resolve the issues once she had reflected on this. But I am more disappointed if the MEA are deliberately sidetracking this too.
 
I have been thinking about what sort of record keeping and data collection I think would be most helpful to me as a pwME for a specialist service to collect:

An alternative proposal

A proposed alternative set of PROMS, questionnaires and data collection to be useful for clinical care visits and long term monitoring and daily monitoring by the pwME to help with pacing:

Daily records of real time data for help with pacing and summary to go on patient records and be available for clinical consultations

Patient's daily records:

a) via an app that collects:
i) wearable data (steps/HR/HRV)
ii) daily single figure severity score using one of the existing severity scales (MEA, AfME or Bell), or separated into physical and cognitive severity.

or

b) If the pwME doesn't have access to smartphone and wearable activity/HR trackers, a simple daily chart with just the severity scale score would suffice to show fluctuations and long term trends.

and

c) Optional recording of daily symptoms and activities could be available in chart or app form for those patients able and interested in doing so.

d) daily tick box on the app or on paper to show whether the pwME is in PEM, and space for a note on what they think triggered it. This should correlate with the objective data for the day.

For clinical consultations and clinic records

1. Summary data from the app or paper record of daily fluctuations

2. One page questionnaire to be filled in by the patient before each clinical consultation:

A. A simple list of about 10 most common symptoms or groups of symptoms, eg, OI, sleep, pain, digestive system, sensory, etc, with tick boxes for which symptom group the pwME wants clinical input at that consultation.

B. A simple list of types activities of daily living with tick boxes for which activities they need support with, eg eating, walking, workplace adjustments, personal care etc, to focus the consultation on arranging for relevant specialist services to be provided, eg OT, dietitian, personal carers or other home or work help, equipment and adjustments.

C. A single tick box for whether the patient is having any mental health issues they want/need support with, so the clinician can advise and/or referral can be made.

3. The clinician's own notes of the consultation and any prescriptions and referrals and care plan if relevant.

4. Results of any testing, eg cognitive function tests, CPET, 6 minute walk, blood and urine tests etc.
_________________

The 'outcome measures' the clinic would collect would be from the wearables and daily severity score, and any tests done, eg bloods and cognitive testing.
 
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This sort of home real time record keeping is becoming more common with chronic illnesses. I have very mild asthma, and was invited by my GP practice asthma nurse via email to sign up to an asthma app. I didn't bother, as it's only occasional allergic asthma, so doesn't need daily monitoring, but I can see how useful it is for both patient and specialist nurse to keep track. Similarly I assume there is an app for diabetes, especially now people are using 'wearable' glucose monitors etc.

The production of multiple questionnaire PROMS seems like a step back to the past. Developments now should be forward looking. Most people have a smart phone, and wearable monitors could be provided for those who can't afford them and want to use them to help with pacing and to help inform their clinicians.
 
Trish said:
This sort of home real time record keeping is becoming more common with chronic illnesses. I have very mild asthma, and was invited by my GP practice asthma nurse via email to sign up to an asthma app. I didn't bother, as it's only occasional allergic asthma, so doesn't need daily monitoring, but I can see how useful it is for both patient and specialist nurse to keep track. Similarly I assume there is an app for diabetes, especially now people are using 'wearable' glucose monitors etc.

The production of multiple questionnaire PROMS seems like a step back to the past. Developments now should be forward looking. Most people have a smart phone, and wearable monitors could be provided for those who can't afford them and want to use them to help with pacing and to help inform their clinicians.
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This sounds like a really great proposal @Trish

I use a bullet journal and there seems a large chronic illness subsection of that community

I use a monthly tracker and include a sleep tracker and boxes for visible score, mood, pain, fatigue (the latter on a 1-5 numerical score where 1 = normal for me and 5 = crash / unable to function due to MH or pain) IBS, whether I managed to shower or get down the stairs (I live in a flat) and I photocopied it for my most recent PIP

I can also add notes for my asthma / anxiety / painkillers etc

because I keep daily notes of activities I can see why each of my measures has tanked or improved

Edit to add: I also wear a smart watch which shows that LC left me with that weird "not quite PoTS random heart rate spikes of triple figures" thing that no one seems curious about investigating.
 
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