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

Hi Andy
Im not sure that I understand your problem with Q1, people answer yes if the have 'it', whether they call it ME or CFS. There is nothing to be gained by repeating the endless discussion about whether ME and CFS are the same thing, or not. After much discussion, we opted to refer to 'the condition we are interested in' as ME/CFS, as it covers all bases and has some traction as it was hte term used in the NICE guidance.
The severity scale is an amalgamation of the ones used by MEA, NICE and the original Bell one. We had a lots of criticisms of each of those and so tried to take hte best part of each and lose the less useful bits. We deliberately do not make reference to the cause of people's inability to carry out activities. They could be becuase of physical, cognitive, emotional, or energy limitations, or any combination, or something else. Although I get that some people tend to assume that we are talking about physical limitations. I can not see a way around this without making the descriptors very long. And then people will complain that it is too taxing to complete.

Yes, we use hte term 'increase in symptoms' as this is how most people describe their PEM. We could reword hte questions to refer to 'an increase in symptoms and/ or the emergence of new ones" but then it will be come very long winded, and multi-faceted, which is a challenge for people with cognitive and processing difficulties. Could you suggest a snappy way of describing the change in symptoms that covers the detail and specificity you would like to see?

Q15. The 1st responce is "Physical activity does not trigger an increase in symptoms"

Final comment - Yes, if you will forgive me, I think you may be over thinking it, and tbh I don't understand the distinction you have made. I guess each individual needs to decide whether the change in symptoms they experience is PEM or not and answer accordingly.

 

Hello again Andy
I can see you are a chap who likes great precision and specificity in the way questions are presneted, which is fair enough, but we are also trying to accommodate people who want a colloquial approach and simple layman's language. I guess we could have said "In the last month, what type of symptoms tend to increase when you have undertaken a level of physical activity beyond your baseline?" but is is a mouthful nad becoming rather jargon-y. I am realising that trying to do anything within the ME community requires a Mo Mowlem approach (if everyone is equally pissed for for different reasons then its about right)

Could you point me in the direction of the questions that can allow conflicting answers when there are multiple responce options?

 

Hi Trish. I am sorry you have found the survey difficult to read. We had toned down the contrast between the text and background because people with visual sensitivities said they found black text on white background too glaring. It looks like we have overdone and will try to find a middle ground

 

Trish, the aim of the assessment is ask abut the main features of PEM, how bad it is, and how it impact son people's lives. So how/why is it a problem to ask about the nature of the triggers and symptom changes, followed by whether it happens immediately or is delayed?

 

The point of hte survey is a) for people to complete it so we can use the scores to statistically refine the structure of the assessment to ensure it provides accurate data. and b) to get feedback from PwME about it. and how it can be improved. So please add your feedback in the section at the end.

The severity scales- please see my previous comments in responce to the post by Andy.

 

Finding one's baseline is indeed a challenge, and understand that you have not been able to find it or any effective strategies. However, finding the level of activity one can undertake without triggering PEM (ie one's baseline, or energy envelope if you prefer) is the basis of learning how to pace and manage the disease. I appreciate that it has not been successful for you, but its has for many others. 'Baseline' was the term preferred and most frequently used by our advisory groups, which is why we chose it. Could you suggest an alternative the fits with your experience?

 

Hi Jonathan
The aim of the PASS is to help PwME and clinicians work out what is happening, and give some pointers about how to manage it. It is intended to help people work out the wood from the trees, which can be a big problem, especially early in the illness. We will find out whether it does that, or not from the feedback and looking at the impact of implementation, but PROMs have been show to have that effect when used in other conditions.

I'm not sure what is meant by "far too much 'interpreted' information". The questions ask about the individual's experience of different aspects of PEM. Thus it is subjective and down to the individual's interpretation. And that is fine.

The severity levels - see my previous comments. The next assessment we will be developing is a measure of activity/disability/function which will be much more detailed, accurate and nuanced. These levels are a stop gap. In the meantime could give examples of how they could be improved?

The whole assessment toolkit is intended to be used to support the clinical assessment process. It could also be used for research as we are confident that the PROMs produce good quality data by the end of project. But you are right, we have no control over how it is used once it is published.

Why do you consider goal setting and treatment planning ominous? They are the cornerstones of rehabilitation. Perhaps, given your following sentences, it is because you use a rather narrow definition of 'treatment' as something, presumably drugs or surgery, that offers a cure. In the rehabilitation world, goal setting refers to the process by which the patient works out their priorities and needs for treatment. Treatment refers to the process and activities to meet those goals. In the case of ME, it will largely be a matter of helping the person work out how to manage their symptoms and activities according to their needs, abilities and preferences. Nothing ominous about it

In the unlikely event that drug Z is found to be an effective treatment for ME, then the PASS could be used to monitor its effect on PEM, which is likely to be one of the outcomes of interest to them (along with symptoms nad activity levels), whatever the score on whatever biomarker is eventually found and used as a biomedical outcome. But there is no sign of a drug treatment any time soon, nor any useful biomarkers, not any curative treatment protocols. In the meantime, questionnaires like this, are way to help people understand their condition and how to manage it.

 

I don't understand, 'very severe ME' is included. It is covered in level 5. If you feel it isn't covered, please could you suggest what should be included and how? We have deliberately removed the labels as, not unreasonably, people whose life had been turned upside down get fed up with being told their illness was mild.
People with 'mild' ME, have short lived PEM. When I'm having a good spell, my PEM lasts minutes or a couple of hours. Fatigability isn't a term I have come across before in this context. How do you define it? How does it differ from PEM? ?
I take your point that the the impact of 'small' activities can have a cumulative effect, others have made hte same point. How would you word a question about it? What would be ask? And how would you word the responses?

 

Sarah have you inadvertently fallen into telling your grandma how to suck eggs?

Or do you believe that @Sean is your junior in matters of the proper manner of handling his ME evidenced by the fact that he is sick enough and sufficiently uncared for socially and medically that he cannot pace (I note a patient developed management technique) to your satisfaction?

Besides which I am hoping you may have misunderstood his point which is not that he would not want to to pace or doesn’t understand the importance or pacing but rather that the reality of life as a disabled person means that he can rely on neither the assistance nor the good health, physical and cognitive reserves that would enable him to manage to manage it.

If someone is good enough to point out the user end problems, in a situation where you have actually asked for people’s feedback, not all of it is going to match with your point of view, which is rather the point. Unless you’re looking for sycophancy, in which cases you’re going to need to make it explicit (we do famously cognitive issues as a patient population) and also to be prepared to face the critical later questions when you have got much further down the line and it’s rather more difficult to alter course. I would hope that that wouldn’t be the idea.

You might be wondering why I am replying to an answer to someone else’s question. One it’s a forum. Two you haven’t just misinterpreted and passed judgement on each of the people willing to dialogue with you here, in your ungracious response(s) you’ve replicated the communication style of the cohort of medical professionals whose work we have all been suffering to consequences of for decades.

Of course making a useful questionnaire is going to be very difficult. I would suggest you bow out gracefully if a little critical attention is going to cause you to publicly make unfavourable judgments about those offering feedback.

 

The core of your question is "Have you been diagnosed with Myalgic encephalomyelitis". The vast majority of patients in the UK will have been told that they have been diagnosed with Chronic Fatigue Syndrome, or CFS/ME, and even though you clarify with "(ME, also known as Chronic Fatigue Syndrome (CFS)", people with limited cognitive resources may well get stuck on the question part, and decide that without a diagnosis of "Myalgic encephalomyelitis" that they can't answer positively. DecodeME used "Have you been given a diagnosis of ME, CFS, ME/CFS or CFS/ME by a health professional", which clearly covers all options.

You could add a simple description to explain that limitations can refer to both those physical and cognitive?

Just because most people describe PEM as an increase in symptoms does not mean that people will understand that you are talking about PEM when you only talk about increase in symptoms, especially as PEM can also include development of new symptoms.

This is how DecodeME asked about PEM,
"In the last 6 months, what happens to your symptoms after you do more physical or mental activity than usual (exceed your energy limit)? If you pace your energy, we want you to think about what would have happened if you didn't. Please only choose ONE answer."

And that response does not cater for someone who can experience PEM from physical over exertion but who paces sufficiently well "in the last month" to avoid it.

But the problem will be, as I found, that without further clarity you will exclude individuals that do make the distinction between 'everyday' symptom increase and PEM. My concern is that the questionnaire is worded as if viewing things from a more mild end of the spectrum, and I know from my own experience that when I was more mildly affected that I wouldn't have understood that PEM is a distinct entity.

And I would argue that to accommodate people who have limited cognitive resources then your questions do need to be precise and have specificity, otherwise you won't be able to rely on the answers.

Q12, Q16, Q21, Q26, Q31, Q36 - all the ones with the square tick boxes.

 

If @Andy a person with ME one with higher than average, by our standards, cognitive reserve, is having difficulty understanding your questionnaire the problem is the questionnaire (still after all in development), not Andy’s decision re how much of his precious cognitive reserves or thinking capacity if you like, he has decided to devote to helping you make your contribution to the field of the ME questionnaire as helpful or at least harmless as possible for others who will be subjected to this questionnaire. The bare minimum ethical requirements will be that people with ME find a questionnaire that they must answer about their own experiences comprehensible.

 

thanks for the heads up, we will amend asap.

 

Hi Ash

Im trying to understand where you are coming from. What is the principle on which you object to 'these forms'? As I’ve said before the aim of the PASS and the other PROMs in the clinical assessment toolkit is to support the clinical assessment process (as it says on the tin). There has never been any mention or consideration of it being used as an advocacy tool (whatever that is) so I don’t expect it would be very useful as such, either.


I am baffled how one can find being asked about the features and nature of the difficulties caused by one’s illness is insulting. Are you considering the fact that health care professionals ask PwME to answer questions about their illness and the effect it has on them insulting or ‘doing the HCPs work for them’? Really? How else do you expect someone to gather that information?

I’m afraid you have lost me with the fool’s gold bit.

Yes, HCPs use documents, take notes, keep records. It is a fundamental part of practice, and they would be struck off if they didn’t.

Do really you think that HCPs should not document the patients’ problems, or record their assessments, treatments or outcomes? Using PROMs, such as the PASS is a way to (relatively) quickly easily (for patient and professional) to make that assessment and record the findings. It helps to decide what treatment to offer and how to provide it, so to use your phraseology – it brings the personalised care closer rather than further away. Why do you feel it is used to distance the patient from the professional? Can you give an example. I am really struggling to understand the point that you are making


Im afraid you’ve lost me on the ‘false austerity’ bit: the austerity/lack of funding in the NHS is very real, but I fail to see how it relates to this project to develop an assessment of PEM. You are, of course, entitled to your opinion about how ME charities should spend their money, but how do you think PwME will be disadvantaged by completing the assessments? My work, with in other chronic disabling conditions shows that they can be rather helpful to both patient and professionals, by facilitating understanding of the patients’ difficulties; aiding communication; and supporting decision-making. In what way is that a disadvantage?

I register your cynicism about our collaboration with PwME (I don’t use the phrase patients, as few of us are patients) and clinicians, and probably most other things too. All I can do it assure you that this project is led by people with ME, delivered by PwME, and informed by PwME at every stage. The advisory groups have contributed to every stage of the project and their input, plus that of the participants who have given their feedback has been invaluable in shaping the running of the project and the PROMS that will be the final outputs. I realise there will always be people who prefer to sneer, and deride any efforts to improve things, but webvare giving it our best shot.

The reference to the PACE trial is completely irrelevant, and misdirected.

We recognise that completing the survey can be arduous for some people, which is why we have constructed it so it can be completed in chunks, in the participants’ own time/pace rather than all at one go, made paper copies available for those who cannot use a screen/keyboard, offered completion by phone or video conference for those who can not read/write. We have highlighted that it is fine for someone else to help complete it, or for someone else to do it on your behalf. We have also encouraged participants to contact me if there are any other accommodations that would be helpful. Is there anything else you can suggest that would make it easier, or any other way to collect the information needed, that would be less arduous?

Again, I note your cynicism, and I limited insight into how clinical practice works and health professionals’ motivation. But how do you work out that providing information that enables professionals to better understand what an individual is going through disadvantageous? How is it dehumanising?

The information from a PROM is used, along with the rest of the assessment to identify the patients’ main symptoms, impairments, activity limitations, and in conjunction with the patient, decide their priorities and goals and devise a treatment plan. That is the point and process of clinical assessment. The effect of the treatment plan needs to be evaluated and monitored – to see if it working and thus whether to continue to whether to change tack. And monitoring is needed to check how the effects of any treatment, and the patients’ status in terms of the effects of their illness is going over the longer term. I fail to see in what way it is manipulative or exploitative, let alone a con or swindle. It is, in fact, the way in which clinical practice for chronic disabling conditions works the world over, and a professional requirement to do so, professionals would be struck off it they didn’t do it.

 

I appreciate Andy, and all the forum members' input. My further comments were an attempt to highlight the context and some of the multiple viewpoints and preferences we are trying to juggle, plus to ask for some suggestions and/or further information so that we can make amendments. If I have managed to cause offence in doing so, I apologise, it was completely unintended.

 

Im afraid I am not familiar enough with this system to reply each of your replies to my replies to your comments (!), but thanks and they are noted.

 

Thank you for the clarification. I can understand the distinction you are making and can relate it to my own experience. I will add it to the feedback from other participants. The challenge we face is to to find some wording, or format that accommodates as many people's understanding and preferences as possible. They are many, and varied, and quite often contradictory. To date, it has been a bigger issue than for the previous study (which focussed on people's symptoms). Hopefully as more feedback comes in, the way forward will become clearer.