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

petrichor said:
The questionnaire in its current state seems flawed in a few ways, but it at least seems better than other questionnaires used in ME/CFS I've seen, which have just been (in my view) blatantly ill-suited for ME/CFS. If this research project at least gets more people thinking about how to actually try to make these measures more appropriate for ME/CFS, that would be a positive
Click to expand...
That was my thought at the start of the project- yay let’s get rid of the Chalder questionnaire. But “hey it’s not as bad as Chalder” isn’t the standard we should be accepting when 90k of PWME money and a hell of a lot of hours input on filling in the proposed replacements is being spent on this.
 
Last edited:
Robert 1973 said:
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.
Click to expand...

I cannot see that an apology has been received, or have I missed it?

If a public apology has not been received, I'm adding the comments of Sarah Tyson @Robert 1973 refers to, and this thread, as additional evidence in the part of the cause of action referencing historical and ongoing 'reputational damage' to the patient group with ME, CFS, CFS/ME and ME/CFS - Article 10 Human Rights Act 1998. This is only one element of the causes of action in the accumulated evidence upon which I'm taking specialist legal advice. Every time, I have to re-read it, it has the same impact on me.

ETA:

sarahtyson said: ↑
I am not engaging with this thread any further now. I had joined it in anticipation of a constructive, critical discussion which could help progress the project and use of measurement tools in ME. 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.
Click to expand...
 
Just popping in to do a bit of catastrophising and hysteria, as is my wont.

MEA" said:
The initial surveys tend to be long. This is because we are trying to cover a wide range of abilities and severity of ME. Part of the analysis involves reducing the number of questions as much as possible, using a data-driven approach, rather than our pre-conceptions about what is important, or needed. The final version of each assessment tool will be as short as possible. We will also explore whether separate scales can be produced for specific issues. For example, people with severe ME/CFS. This will mean that people will not have to complete the whole questionnaire, all the time.
Click to expand...
I did wonder if the Tyson, Gladwell et al were experimenting with a wide range of questions, with the plan to work out what questions were most useful. And it seems that they are. But that in itself is a problem. If you are going to survey a whole lot of tasks of daily living and socialising and work, what then do you leave out when shortening the survey? How can you know that you haven't left out something that is crucial to the particular patient? While you might decide that the sample patients gave similar answers about dancing and walking a mile, one particular person may value dancing greatly, and sacrifice a lot to keep doing it.

And that takes us back to what people have already said - a good occupational therapist or the like will be very used to having a chat with someone and working out what particular challenges and desires the patient in front of them has, and knowing whether they have some solutions to offer.

90 questions, or 45 - this survey is not going to capture the patient's experience. I assume the idea is that the therapist has 45 opportunities to demonstrate some sort of improvement and justify their existence. But, instead, just have a satisfaction survey asking patients how satisfied they were with the assistance, and any ideas for improvements.

Looking at the questions from the latest survey, I genuinely would find many almost impossible to answer. Things fluctuate. The answers I give would be vulnerable to framing by the therapist. Kitty said it well:
Kitty said:
The questionnaire shows zero understanding that our ability to do all activities is completely conditional on (a) how many others we've done or still need to do, (b) how essential it is that day, and (c) what happened yesterday, and the day before, and the day before that.
Click to expand...


And so we come back to the wearable technology and the apps. We are seeing them used more and more - they are accurate and feasible. They can give standardised data that can be compared patient to patient, and at different time points for an individual patient.
Peter Trewhitt said:
Electronic activity monitor, that hopefully recorded the amount of time lying down as well would provide a much more meaningful record.
Click to expand...

I've said it before, and it's still true - this MEA project is an anachronism (well, I don't think I used exactly that word, but it applies). And the risk is that there is manipulation of the data as it is collected and when it is analysed, in order to harm people with ME/CFS.


MEA said:
We realise that some people with ME will consider it controversial to work with clinical services. Our view is that one has to engage with people, in order to influence them or change practice.
Click to expand...
That is incredibly patronising and also ironic given Sarah Tyson's behaviour. This forum was set up with the explicit aim of allowing patients, clinicians and researchers to engage.

Giving staff in the UK ME/CFS rehabilitation clinics tools that allow them to keep inflicting the harm they have been doing for decades while continuing to think that they are helping is not useful. Equipping them with validated wearable technology and the skills to use it and teach patients to use it would be a much more worthwhile endeavour. It would mean that the staff got objective feedback on the success or otherwise of their interventions - and it is that that is likely to produce improvements. A useful side benefit would be that good objective outcomes could be used in research of treatment effectiveness.


petrichor said:
The questionnaire in its current state seems flawed in a few ways, but it at least seems better than other questionnaires used in ME/CFS I've seen, which have just been (in my view) blatantly ill-suited for ME/CFS. If this research project at least gets more people thinking about how to actually try to make these measures more appropriate for ME/CFS, that would be a positive
Click to expand...
Others have said it well. 'Better than the Chalder Fatigue Questionnaire' is too low a bar to aim for. And, we need more than 'this project gets more people thinking about how to try to make more appropriate measures' when it is using 90,000 pounds of scarce research funding. Also I think you are ignoring the substantial harm that a battery of vague hard-to-answer easily manipulated questions can cause.
 
The following extracts from the FAQ re a mental health PROM are not at all reassuring. Too many concerning statements to highlight.

"How I feel and my heath changes all the time, how can I complete the questionnaire?
We know how you feel can change on a day-to-day basis. How you feel now may be very different from how you felt yesterday or how you will feel in a few hours’ time, especially if you take medications to support your health and wellbeing.

The questionnaires are meant to give us a snapshot of your health. We know they give us a very limited view of how you have been feeling recently, but it’s important that you complete them thinking about how you feel at the time."

How will the results be reported back to me and my healthcare worker?
Once you submit your questionnaire you won’t be able to save it or print it, however your responses will be immediately available to your healthcare worker.

You can ask for feedback during your appointment; although feedback will be dependent on staff accessing the information, and this may not always be possible depending on where your appointment is.

If your appointment is at a clinic, your healthcare worker will probably be able to share your answers with you and compare this with previous answers you may have given. They will also be able to talk to you about what this means.

How are the questionnaires going to be used?
Your responses will be used to help us understand the problems you are having, find out more about your health and wellbeing and quality of life, and to monitor changes in these.
The responses can help you and your healthcare team make an informed decision about what treatment is most suitable for your condition, needs and circumstances.

By filling in your answers at the beginning of your care you can get a really good idea of where you are starting from. Filling in your answers again at a later date, either during or at the end of your treatment, can be a useful record of where you are making progress and how well your treatment is working for you. Any positive change is an achievement and can give you confidence in managing your health and wellbeing. We don’t always expect to see constant improvements, as we know there are many things that can impact on a person’s health and wellbeing e.g. life events. If there isn’t a lot of change, or your ratings get lower, we might use this as a starting point to discuss making some changes to your treatment.

Whatever happens, completing PROMs over a period of time helps to build up a picture of your care. This can highlight areas that are meaningful and important to you and can be a very useful tool to help you understand the parts of your life where you need the most help, and how well the help you are getting is working.

there are many things that can impact on a person’s health and wellbeing e.g. life events. If there isn’t a lot of change, or your ratings get lower, we might use this as a starting point to discuss making some changes to your treatment.

Whatever happens, completing PROMs over a period of time helps to build up a picture of your care. This can highlight areas that are meaningful and important to you and can be a very useful tool to help you understand the parts of your life where you need the most help, and how well the help you are getting is working.

https://www.southwestyorkshire.nhs....sures-proms/proms-frequently-asked-questions/

ETA to bold the heading so people know where it's from
 
Last edited:
MEMarge said:
Once you submit your questionnaire you won’t be able to save it or print it, however your responses will be immediately available to your healthcare worker.
Click to expand...

why would it not be possible to download a .pdf? That is how I would expect this to work; it is widely used elsewhere.

Why can't patients have a copy for their own reference and monitoring?

MEMarge said:
feedback will be dependent on staff accessing the information, and this may not always be possible
Click to expand...

so patients are expected to complete these epic questionnaires as the basis for an appointment and the discussions therein, but staff might not have access to the questionnaires

I could be catastrophising here, but I see a serious discrepancy in this proposal.
 
MEMarge said:
This can highlight areas that are meaningful and important to you
Click to expand...

I did the HOPE for Long Covid course, on an app on my phone and they had a couple of weeks or so on figuring out what matters most to you, with fun videos and helpful prompts. I now have a list on an index card, super helpful. Surely, given this already exists and is a self paced, easily accessible NHS supported course this would be more helpful here?

MEMarge said:
can be a very useful tool to help you understand the parts of your life where you need the most help,
Click to expand...

Surely this is a tick list? Pain, fatigue, sleep, PoTS, social care, mental health support, brain fog, breathlessness etc.

As a person very prone to overthinking and over analysing everything and passionate about spreadsheets and lists, this feels overcomplicated and unnecessarily opaque and fails to see the wood for the trees.

Am I missing something? Are they planning to use some sort of statistical analysis on the data that it needs such a standardised format for answers? I think this is in danger of trying to fit square pegs in round holes and missing valuable and very relevant details - measuring ME in this standardised way feels too much like trying to knit fog.
 
MEMarge said:
How will the results be reported back to me and my healthcare worker?
Once you submit your questionnaire you won’t be able to save it or print it, however your responses will be immediately available to your healthcare worker.

You can ask for feedback during your appointment; although feedback will be dependent on staff accessing the information, and this may not always be possible depending on where your appointment is.

If your appointment is at a clinic, your healthcare worker will probably be able to share your answers with you and compare this with previous answers you may have given. They will also be able to talk to you about what this means.
Click to expand...
How incredibly dehumanising and patronising. How is this even allowed in these days of full access to our medical records. I will never fill in a questionnaire that goes in my medical records in future.

MEMarge said:
Whatever happens, completing PROMs over a period of time helps to build up a picture of your care. This can highlight areas that are meaningful and important to you and can be a very useful tool to help you understand the parts of your life where you need the most help, and how well the help you are getting is working.
Click to expand...
Trust the expert, they know more about your health from a few answers to inadequate questions than you know from your daily lived experience.
I still maintain this is all about creating records that give the impression of listening to patients without having to get involved in the messy business of listening to patients. Bah humbug.


JellyBabyKid said:
Am I missing something? Are they planning to use some sort of statistical analysis on the data that it needs such a standardised format for answers? I think this is in danger of trying to fit square pegs in round holes and missing valuable and very relevant details - measuring ME in this standardised way feels too much like trying to knit fog.
Click to expand...

Absolutely. That's why we need to see the algorithm the intend to use to create quantitative data from answers to their chosen questions.

Worse than CFQ and SF 36. At least with those we know what the algoritm is and can see how useless and easily manipulated they are.
 
I said I wanted to do some reading and I have not done it (yet!) but one theme I wanted to revisit is that of the “PROMS creates a data set which can be used in research” I feel like that it was said it wouldn’t/was silent, then it has been said. Over the course of the MEA announcements and Sarah Tyson’s posts here, it’s been inconsistent.

Further to that, how and why the HECK you’d use the rubbish out of this debacle as a data set (rubbish in=rubbish out)

and why aren’t they using FUNCAP
And why are they trying to create their own less useful version of FUNCAP

This has all the preparation, training and forethought of a task on “The Apprentice” - none. Like someone trying to do an approximation of creating a toolkit.
 
MrMagoo said:
and why aren’t they using FUNCAP
And why are they trying to create their own less useful version of FUNCAP
Click to expand...
I have just been reminding myself of FUNCAP.

Here's our thread about it:
https://www.s4me.info/threads/asses...stionnaire-2023-sommerfelt-et-al.35464/page-3

And here's a link to try it yourself:
https://raffbenato.github.io/funcap55/

It's so much better than anything on this MEA project, I ask again, why did the MEA fund this project.

It would be possible to put together a series of resources already existing that would be more useful than anything being produced here.
 
Ditto to the comments regarding the inability to print off any completed questionnaires. No guarantee that clinic HCP will be able to access them - what's the point?

These form part of your healthcare records and must be accessible to the patient.

Trish said:
I have just been reminding myself of FUNCAP.

Here's our thread about it:
https://www.s4me.info/threads/asses...stionnaire-2023-sommerfelt-et-al.35464/page-3

And here's a link to try it yourself:
https://raffbenato.github.io/funcap55/

It's so much better than anything on this MEA project, I ask again, why did the MEA fund this project.

It would be possible to put together a series of resources already existing that would be more useful than anything being produced here.
Click to expand...

I've just completed the FUNCAP for the first time. Prior to completing it, with a total of 16 years experience of this illness at all levels, with the last 12 at the severe end of this illness, I would asseess my level of ME/CFS as severe bordering on very severe.

It took me over an hour to complete the 55 questions. The results confirmed what my experience as an expert patient in this illness already told me, that I'm severe/very severe. I've saved it as a pdf and will be emailing it to my carer, and printing off a copy for my medical file for her to reference for others. All in all, a very useful and more importantly, accurate questionnaire tool for the patient's benefit.
 
Yes South Yorks mental health has earned a place on my DNA (do NOT attend).

FUNCAP is lovely to fill in, 0-5 answer levels stay displayed at the top of the page. Other NHS PROMS use an app, it’s 2024! Instead I fear PROMS will be printed out and filled in by hand…everything about it feels outdated.

Today, or this week but I didn’t read it until today, Visible launched the option of guided breathing. I tried it out and my heart rate slowed down nicely. I went into the “resting” HR zone which always eludes me.
It’s got a built-in daily reminder to do it, which I will. Apps. The future.
 
MrMagoo said:
Yes South Yorks mental health has earned a place on my DNA (do NOT attend).

FUNCAP is lovely to fill in, 0-5 answer levels stay displayed at the top of the page. Other NHS PROMS use an app, it’s 2024! Instead I fear PROMS will be printed out and filled in by hand…everything about it feels outdated.

Today, or this week but I didn’t read it until today, Visible launched the option of guided breathing. I tried it out and my heart rate slowed down nicely. I went into the “resting” HR zone which always eludes me.
It’s got a built-in daily reminder to do it, which I will. Apps. The future.
Click to expand...
I'm not supporting these PROMS, but just to say FWIW that i loathe filling in questionnaires online, i find it much more difficult and taxing than doing it on paper.
I detest my smart phone, and apps and the modern obsession to do everything through a f'ing APP!
AGGHH!! its all a lot harder for me, i'd much sooner a print out and that includes the FUNCAP. I also cant get on with white text on black background which everyone seems to think is sooo much easier, it isnt easier for all of us it hurts my eyes so much.
 
MrMagoo said:
I just saw the profile for Sarah Tyson on the BACME conference thread. A bit surprised she’s involved with Physios For ME as a “lay representative” as well as DoHSC plan for ME
(See just above bullet points)
View attachment 21896
Click to expand...
I believe its called networking you know making contacts that look really good on a cv to benefit ones career . to many people are promoted to positions based on who they know .
 
JemPD said:
I'm not supporting these PROMS, but just to say FWIW that i loathe filling in questionnaires online, i find it much more difficult and taxing than doing it on paper.
I detest my smart phone, and apps and the modern obsession to do everything through a f'ing APP!
AGGHH!! its all a lot harder for me, i'd much sooner a print out and that includes the FUNCAP. I also cant get on with white text on black background which everyone seems to think is sooo much easier, it isnt easier for all of us it hurts my eyes so much.
Click to expand...
I agree- white text on dark kills my eyes!
Anything on an app should of course also be easily available in other formats like paper. Bit harder to print out an app version of a paper only questionnaire.
 
You must log in or register to reply here.
Back
Top Bottom