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

MrMagoo said:
Is the data this generates going to form the “data set” which NICE said was missing? What was they required for?

will patients be giving informed consent for their answers to be used in other purposes?

what about symptoms that haven’t been listed?

All this tells anyone is “people had symptom X to some degree at some point in the past month” and assumes that symptom was because of ME.

People have blurred vision and headaches when they need an eye test. Women have nausea when they became pregnant. Etc.
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If they use this to diagnose then we have a real issue.

Because it is a great way given the PEM description of filling the ME/CFS category with loads of people without PEM. WHich would be the natural tactical reaction of people who built a career on research that used the wrong definition of the condition to get results that don't work for ME/CFS to try and tackle their opprobrium at Nice underlining this issue. Get hold of the dataset and pollute it/turn it into something different by playing down PEM into something else.

SO now anyone who gets tired after 'something trivial' would get diagnosed with PEM? Their problem has gone because they've turned PEM into fatiguability or whatever the non-specific thing that could stretch to that they've describe in the only lines that have anything about the cardinal symptom for diagnosis
 
This is redefining goalposts post NICE guidelines with a huge tick box to say there's been PPI . Which gives it a veil of credibility.

In tandem with a new " back to work" benefits landscape , and the rise of FND it's a massive own goal for MEA.

It's difficult to contemplate that they simply do not realise the significance of this , or the impact it will have..Who reviewed this application at funding stage and who signed it off ?

Neither my daughter nor my aunt could complete this .
It's relevance for them is truly limited .
The potential for harm is huge.

It's a Trojan horse
 
bobbler said:
If they use this to diagnose then we have a real issue.

Because it is a great way given the PEM description of filling the ME/CFS category with loads of people without PEM. WHich would be the natural tactical reaction of people who built a career on research that used the wrong definition of the condition to get results that don't work for ME/CFS to try and tackle their opprobrium at Nice underlining this issue. Get hold of the dataset and pollute it/turn it into something different by playing down PEM into something else.

SO now anyone who gets tired after 'something trivial' would get diagnosed with PEM? Their problem has gone because they've turned PEM into fatiguability or whatever the non-specific thing that could stretch to that they've describe in the only lines that have anything about the cardinal symptom for diagnosis
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This is in addition to assessment. It’s pure rehabbing.
 
Amw66 said:
This is redefining goalposts post NICE guidelines with a huge tick box to say there's been PPI . Which gives it a veil of credibility.

In tandem with a new " back to work" benefits landscape , and the rise of FND it's a massive own goal for MEA.

It's difficult to contemplate that they simply do not realise the significance of this , or the impact it will have..Who reviewed this application at funding stage and who signed it off ?

Neither my daughter nor my aunt could complete this .
It's relevance for them is truly limited .
The potential for harm is huge.

It's a Trojan horse
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The MEA who have not shared the application or reasons for funding agreed.
 
bobbler said:
they can't be
Utter misunderstanding of the whole thing. I don't believe these people get it is an illness, that currently isn't treated - and understand that means like having any other illness that now has treatment and witholding that eg diabetes, MS, cancer, RA would be - so 'rehabbing' doesn't work the same if you haven't actually fixed the broken leg first, in fact it's likely to lead to a wonky leg

Except maybe it isn't if the questionnaire is the equivalent of providing no box for 'leg gone wonky/worse than before' on the feedback form so no treatment wasn't a success.
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It’s this
 
TIMES questionnaire said:
5. Post exertional malaise (PEM).
PEM describes a worsening of symptoms after seemingly trivial or undemanding activity of any description. It is often referred to PEM as ‘a crash’, or ‘relapse’. It may a) last for hours, days (or more); b) worsen over time and c) the onset can be immediate and/or delayed for hours or days.

Over the last month, how often has this symptom happened?
I do not have this symptom Some of the time Most of the time All of the time
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Hutan said:
PEM does not describe 'a worsening of symptoms after seemingly trivial or undemanding activity of any description'. If it did, it would mean that we need another word for 'a worsening of symptoms after seemingly important or demanding activity of any description'. 'seemingly trivial.. activity' is not the right phrase - they presumably mean 'seemingly trivial activity levels'. Caring for your child, preparing food for the family and paying your bills aren't trivial activities, but the activity levels associated with those activities can be.
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bobbler said:
SO now anyone who gets tired after 'something trivial' would get diagnosed with PEM? Their problem has gone because they've turned PEM into fatiguability or whatever the non-specific thing that could stretch to that they've describe in the only lines that have anything about the cardinal symptom for diagnosis
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I agree there is a big problem here.

I think I recall that the first version of this questionnaire did not include PEM at all, with the second questionnaire called PASS being intended to collect detailed information about the pwME's PEM experiences over the last month, but instead it conflated PEM and fatiguability into a single confused and lengthy set of ambiguous questions about 'symptoms after exertion'.

We spelled out this problem in our letter to the MEA:
https://www.s4me.info/threads/open-...g-proms-led-by-sarah-tyson.37937/#post-524406

I wonder whether, following our and other feedback, they have junked PASS and decided instead to include a single PEM question in this TIMES questionnaire.

I think in my feedback I may have suggested that they define PEM and ask whether the pwME experiences it, so I guess that's what they are trying to do here.

The NICE guideline defines PEM as:
Post-exertional malaise
The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.
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I agree, the emphasis in the definition in the questionnaire is wrong, with reference to trivial and immediate, and may last hours, which to me seems to deliberately include fatiguability. Why not use the NICE definition? It's not perfect, because to my mind it should emphasise not just worsening symptoms, but significant reduction in ability to function, but it's better than Tyson's version, and she is supposed to be creating NICE compliant materials.

I agree asking how often this definition of PEM happened in the last month is nonsensical. Do I answer 'all the time' because I feel worse after every activity, or do I only count crashes, and their duration or severity is ignored.
 
Amw66 said:
Neither my daughter nor my aunt could complete this .
It's relevance for them is truly limited .
The potential for harm is huge.
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I agree. It's unsuitable because of length and wordiness for anyone with severe ME/CFS. I got around it by not reading all the detail, and just taking a quick stab at choosing an option for each question without taking time to think about it, simply because I wanted to be able to copy and paste it here for discussion. Also although my ME is physically severe, my cognitive function is less affected than most pwME describe. Anyone with cognitive problems would give up after the first page.

I also agree with all the concerns about it being completely useless for the model of care we are supposed to be getting according to NICE, with doctor led medical care, not therapist led 'rehabilitation' style clinics.

I am even more worried about the intentions for the guidance 'toolkit' Tyson and Gladwell are planning to go with this set of PROMS, now that we've seen what Gladwell says about finding baselines then increasing activity, ie pacing-up, and his nonsensical stuff about assessing each activity in isolation instead of cumulative activity. His whole approach is wrong, and is not NICE compliant.
See this thread:
Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template
AfME have recognised this, and withdrawn his awful 'care and support plan' document, yet the MEA are supporting this project still. I don't get it.
 
Amw66 said:
This is redefining goalposts post NICE guidelines with a huge tick box to say there's been PPI . Which gives it a veil of credibility.

In tandem with a new " back to work" benefits landscape , and the rise of FND it's a massive own goal for MEA.

It's difficult to contemplate that they simply do not realise the significance of this , or the impact it will have..Who reviewed this application at funding stage and who signed it off ?

Neither my daughter nor my aunt could complete this .
It's relevance for them is truly limited .
The potential for harm is huge.

It's a Trojan horse
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Totally agree, why don't you contact them and ask?
 
Trish said:
Why not use the NICE definition?
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This is the big question to me which raises serious questions of some work being done currently. We have the NICE definitions. And yet people don’t copy paste, but instead try to rewrite things. It happened in the Care and Support Document and is happening again in this.

Why?

There are many potential reasons. Regardless of intent, having different people in different places pulling in different directions seems incredibly unhelpful and likely to muddy already confused waters. Stick to the agreed definitions and guidelines. Everyone in the field can and should refer back to them. If they need iteration then we work together to do so.

Nothing should be funded, promoted or considered to be used within the NHS if it is not firmly grounded in the NICE guidelines.
 
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hotblack said:
This is the big question to me which raises serious questions of some work being done currently. We have the NICE definitions. And yet people don’t copy paste, but instead try to rewrite things. It happened in the Care and Support Document and is happening again in this.

Why?

There are many potential reasons. Regardless of intent, having different people in different places pulling in different directions seems incredibly unhelpful and likely to muddy already confused waters. Stick to the agreed definitions and guidelines. Everyone in the field can and should refer back to them. If they need iteration then we work together to do so.

Nothing should be funded, promoted or considered to be used within the NHS if it is not firmly grounded in the NICE guidelines.
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Was the issue that ‘this would include people within the condition, if diagnosed on the basis of these questionnaire responses, that do not have ME/CFS as defined by NICE’ raised with the MEA?

It seems to me this ought to be a big red flag for the MEA that they are working with people and a group (BACME) that are not compliant with the NICE guidelines. Obviously the MEA would have some justification if they could argue that this joint project is helping the UK specialist services understand the new guidelines, but so far this project seems to be proving this is not the case for the clinicians involved.
 
MrMagoo said:
So if I have nausea I take prescribed meds to control it, because I discussed it with my GP who gave them to me.

Will the NHS ME clinics be prescribing meds? They won’t, OTs and Physios can’t prescribe.

This TIMES annoys me because it’s on the level of a copy of a 1991 Just Seventeen magazine personality test, to see which one of pop group Brother Beyond is your ideal boyfriend. That is, it’s made up nonsense with no chance of any real-world outcome.

I’d love to see what the “answer sheet” which goes with this questionnaire says (it doesn’t exist. You’ll just be to,d to eat healthily and do sleep hygiene)

I may as well spend an hour with a tarot card reader than at the NHS ME clinic.
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Just to add in here - physios can actually prescribe if they have done an independent prescriber course and are working within their scope of practice . OTs can't do these at present.
 
MEA article:

Research: Retesting the Post Activity Symptom Scale (PASS)
October 3, 2024


We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire. People whose ME/CFS was triggered by a covid infection (i.e. long covid) are also invited to take part.

This is the final stage of the research to develop an assessment of post-exertional malaise, or the worsening of symptoms that people experience when they overdo it or exceed their ‘energy envelope’.

People with ME/CFS have generously completed the initial survey to test out this assessment, and we have used the feedback and data to make revisions. We now need to test out the revised version to double check it produces robust data.

Many thanks to the people who signed up for the survey to test out revised version of the ME symptoms questionnaire.

We have had an amazing response and have now closed the survey to new participants, as we have reached the numbers needed, but we will leave the survey open a while longer so people can complete their submissions.

Professor Sarah Tyson
Here's the link which is still available for those who need to finish an original saved entry:

Complete saved entry for survey
In the meantime, we have a new survey which we'd like to invite people to take part in. This one is to test out the revised version of the Post Activity Symptom Scale (PASS) which assesses post-exertional malaise.

Those of you who took part in the first PASS survey will see that it is now much shorter and simpler.
Here is the link to the new survey:

Enter new PASS survey
If you have any questions, please do not hesitate to contact Prof Tyson on Sarah.tyson@manchester.ac.uk
 
Page 1 of revised PASS

Developing a clinical assessment toolkit for people with ME/CFS and clinical services.
Retesting The Post Activity Symptom Scale (PASS)

We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire. People whose ME/CFS was triggered by a covid infection (i.e. long covid) are also invited to take part.

This is the final stage of the research to develop an assessment of post exertional malaise, or the worsening of symptoms that people experience when they overdo it or exceed their ‘energy envelope’. People with ME/CFS have generously completed the initial survey to test out this assessment, and we have used the feedback and data to make revisions. We now need to test out the revised version to double check it produces robust data. So, we are asking you to complete this online survey.

The assessment is now much shorter and simpler. If you would like more information about the toolkit project and some frequently asked questions (FAQs) please click here, and the participant information sheet is found here. If you would like to progress to the survey, please tick the consent questions at the bottom of this page. For further details about the questionnaire please continue reading.

There are 24 questions in total. We appreciate this quite a lot, but we want to be comprehensive. We realise people’s post-exertional malaise (or worsening of symptoms when you overdo it) vary so the idea of the questionnaire is to take a snapshot of how you are ‘at present’ (ie on an average day over the last month) rather than trying to record the whole history. This can help you and other people understand what you are able to do, how you adapt, and start discussions about how to manage your activity levels.

The assessment starts with some questions about you, then the PASS which asks about different aspects of your post exertional malaise. Finally, there is opportunity to tell us anything else about your ME/CFS or the questionnaire.

There is a ‘% Completed’ marker at the top of each page so you can keep track of how far you have got.

It takes about 10-15 minutes to complete in one go. but you can take as long as you want to complete it. Your answers will be saved automatically so you can take breaks and come back to same place when you return. However, there is no ‘save’ button or confirmation of the save as it is contained in the inner workings of the survey tool. Please trust us, you’re your work has been saved. You can take as many breaks as you wish. If you need help from another person, or another person to complete the survey on your behalf, that is fine.

There is a ‘back’ button so you can go backwards and check your answers if you wish. Usually, the button is at the bottom of the screen, but sometimes it appears at the top. If the back button does not show, it may appear if you try on a different browser or device, or if you delete the cookie cache.

The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself. If you have any questions, would prefer a paper copy or complete the survey by phone; or any other accommodations, please do not hesitate to contact her on sarah.tyson@manchester.ac.uk to arrange.



Consent (you must select all fields below to proceed)
  • I have read the participant information sheet (PIS v4 23rd Jan 2024) and have had opportunity to consider the information and ask questions and had these answered satisfactorily.

  • I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without detriment to myself. I understand that it will not be possible to remove my data. I agree to take part on this basis.

  • I understand that any anonymised data collected may be made available to other researchers.

  • I understand that data collected during the study may be looked at by individuals from The University of Manchester or regulatory authorities, where it is relevant to my taking part in this research. I give permission for these individuals to have access to my data.

  • I agree to take part in this study.

SECTION 1: ABOUT YOU


1. Have you been diagnosed with Myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome (CFS)?
  • Yes

  • No


2. Have you been diagnosed with Long-Covid OR was your ME/CFS triggered by a Covid infection?
  • Yes

  • No


3. Where do you live?
  • England

  • Wales

  • Scotland

  • Northern Ireland

  • Other Islands and Crown Dependencies

  • Somewhere else
4. Gender
  • Male

  • Female

  • Non-binary / third gender

  • Prefer not to say


5. Age

6. Time (years or months) since you developed ME/CFS/long covid

7. Severity of ME/CFS or Long-Covid
Please pick which of these levels best describes how ME/CFS affects you at the moment.
PLEASE NOTE: Activities can be physical, cognitive, social, emotional etc.
  • Level 1 1-20% Disability - Adapting activity. Able to manage the things that are important to you but need to adapt how, or how much you do.

  • Level 1-2. In between levels 1 and 2.

  • Level 2: 21-40% Disability - Prioritising Activities. Able to manage the things that are most important to you but have adapted how you do them and/or limited other activities to prioritise them. Eg. Stopped hobbies to prioritise work (or vice versa).

  • Level 2-3. In between levels 2 and 3.

  • Level 3: 41%-60% Disability - Limited independence. Able to carry out some light activities but need rest periods; needs assistance with domestic activities. Mobility outside the home is restricted.

  • Level 3-4. In between levels 3 and 4.

  • Level 4: 61-80% disability - Essentially housebound. Require help with all domestic and some personal care. Mobility severely restricted - usually confined to the house, needs a wheelchair (or similar) if going outside.

  • Level 4-5. In between levels 4 and 5.

  • Level 5: 81-100% disability- essentially bedbound. Requires 24 hour care for personal care which may include difficulty eating and the need to be artificially fed, severe cognitive impairments, and sensitivity to sound, light and/or touch which require environmental adaptations. Cannot manage any domestic tasks, employment or education. Social and leisure activities very severely limited.
 
Section 2: The Post Activity Symptoms Scale (PASS)
The following questions are about the worsening of symptoms people with ME/CFS get when they exceed their baseline, or ‘energy envelope’. Other terms you may come across are post exertional malaise (PEM), a crash, flare up, payback, setback, or relapse. It is most commonly experienced as an increase in symptoms, but it can also involve the onset of different symptoms to your usual baseline, so we refer to a ‘worsening of symptoms'. Overall, we want to capture how things get worse or are more of a struggle when you overdo it (i.e. trigger PEM). We know this is very variable, so the idea is to take an overall snapshot of how it is affecting you at present, rather than trying to record every aspect, and the whole history. This can help you and other people understand the impact it is having and start discussions about how to manage it.


8. Do you experience a worsening of symptoms when you overdo it?
  • No

  • Yes


9. Triggers Which of the following have triggered a worsening of symptoms (ie PEM) over the last month.
No Yes
I do not know what triggers the worsening of symptoms
Physical activity
Cognitive activity,
Social activity
Emotional activity/stress
Other illnesses e.g. a viral infection
Sensory stimulus (e.g. bright lights, loud environments)
Allergies / intolerances (e.g. foods, smells)
Pain
Sleep problems
Change in the weather/ seasonal changes or temperature extremes
Hormonal changes e.g. menstrual cycle or (peri)menopause
Something else (please state)


9a. Which triggers have been most problematic in the last month, in order of how problematic they are:
1st. most problematic

9b. Which triggers have been most problematic in the last month, in order of how problematic they are:
2nd. most problematic

9c. Which triggers have been most problematic in the last month, in order of how problematic they are:
3rd. most problematic

10. Warning signs: Do you have warning signs, so you know in advance that you are about to overdo it/ trigger PEM?
  • No

  • Yes
10b. If yes, what are the warning signs?

11. Symptoms: Which symptoms have worsened when you have ‘overdone it’ (i.e. triggered PEM) in the last month?
No Yes
I do not experience a worsening of symptoms when I overdo it / PEM
Fatigue
Musculo-skeletal symptoms. (e.g. weakness, stiffness, clumsiness)
Pain
Cognitive symptoms: difficulty with thinking and memory (brain fog)
Sleep disturbance (e.g. difficulty getting to sleep, or staying asleep, sleeping during the day)
Neurological symptoms (e.g. headaches, migraine, sensitivities to sound, light etc, altered sensation, tinnitus)
Gastrointestinal symptoms (e.g. nausea, stomach pain, bloating)
Cardio-respiratory symptoms (e.g. palpitations, breathlessness, chest pain, circulation changes)
Orthostatic intolerance (changes in heart rate, breathlessness etc) when becoming more upright (i.e. when sitting or standing up) for a period of time
Dizziness
Loss of temperature control (feeling hot or cold which is not related to the environment)
Allergy symptoms (e.g. sore throat, tender glands/lymph nodes, runny eyes, skin changes, wheezing, flu-like symptoms)
Emotional symptoms (e.g. increased irritability, anxiety or low mood)
Something else (please state)


11a. Please list which symptoms have most troublesome when you have overdone it (ie triggered PEM) in the last month, in order of how problematic they are:
1st. most troublesome

11b. Please list which symptoms have most troublesome when you have overdone it (ie triggered PEM) in the last month, in order of how problematic they are:
2nd. most troublesome

11c. Please list which symptoms have most troublesome when you have overdone it (ie triggered PEM) in the last month, in order of how problematic they are:
3rd. most troublesome

11d. Is there anything else you would like to tell us about the symptoms you experience when you have overdone it/ triggered PEM?
 
12. Level of activity triggering a worsening of symptoms / PEM
NB. This question refers to what is strenuous, demanding or stressful activity for you at present. Essentially, we are asking for a ballpark figure about how much you can do without triggering a worsening of symptoms. This indicates the size of your ‘energy envelope’, which is an important issue when it comes to managing energy and activity levels, and pacing. We are not asking about a comparison with other people with ME/CFS, healthy people, or how you were before you became ill. We understand that the baseline levels of symptoms fluctuate, which will impact on how much you can do.


12. Overall, in the last month what level of activity has typically triggered a worsening of symptoms when you overdo it?
  • I do not experience a worsening of symptoms /PEM

  • Strenuous or stressful activity (for you)

  • Moderately demanding or stressful activity (for you)

  • Mildly demanding or stressful activity (for you)


13. Frequency: Over the last month, how often have you overdone it and triggered a worsening of symptoms/ post exertional malaise?
  • I do not experience a worsening of symptoms /PEM

  • Constantly

  • Daily

  • Weekly

  • Occasionally (less than weekly)


14. Delay: In the last month, has the worsening symptoms (i.e. onset of PEM) typically been delayed after you have overdone it?
  • I do not experience a worsening of symptoms /PEM

  • Yes, delay of less than an hour

  • Yes, delay of an hour or more

  • Yes, delay of a day or more

  • The changes involve both rapid onset and later onset changes


15. Duration of the change in symptoms: In the last month, how long does the worsening of symptoms typically last/ take to recover after you have overdone it / triggered PEM?
  • I do not experience a worsening of symptoms /PEM

  • A day or less

  • Several days

  • About a week

  • More than a week


16. Impact on daily life: In the last month, what impact has worsening symptoms when you overdo it / post-exertional malaise typically had on your day-to-day life?
  • I do not experience a worsening of symptoms /PEM

  • Significant issue

  • Major issue

  • Very major issue


17. Is there anything else you would like us to know about your symptom worsening when you overdo it/ post exertional malaise?

18. Is there anything else about the questionnaire you would like to tell us?
 
There are still significant problems with this, such as the meaningless question 12 about what level of activity triggers PEM, with no benchmarks for what is strenuous or mild etc, but it's much better than before. At least this time it's about PEM, not muddling together all activity after exertion.
 
12. Overall, in the last month what level of activity has typically triggered a worsening of symptoms when you overdo it?
  • I do not experience a worsening of symptoms /PEM

  • Strenuous or stressful activity (for you)

  • Moderately demanding or stressful activity (for you)

  • Mildly demanding or stressful activity (for you)
Click to expand...

They seem to have missed at least one bullet point from the PEM triggers:

• No activity other than eating, toileting, changing position, and sleeping

Which contributes to making 'overdoing it' still sound like a choice to do something unwise, rather than an inevitable consequence of being alive and having ME/CFS.
 
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