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

bobbler · Oct 4, 2024

Hutan said: ↑

They seem to be conflating post-exertional malaise with a worsening of symptoms. They don't seem to have understood what we were saying about the difference between fatiguability and PEM/a crash. They seem to still be treating these things as the same things.

Even the name (Post-Activity Symptoms Scale) seems to be adding to the confusion.

The fatigue and weakness I get in my arms from hanging out the washing, or the loss of power in my thigh muscles that I notice when I have been doing a lot are post-activity symptoms but they are not, to my way of thinking, post-exertional malaise. There is not a feeling of being desperately unwell.

And this seems to ignore the fact that it is the accumulation of exertions that seems to cause PEM. People are asked what triggers their PEM, people who have just been diagnosed and who may not even be sure what PEM means. I'm not even sure what PEM means after reading this questionnaire. How can the patients have any sort of confidence in what is causing their PEM if they aren't using wearable technology to track what is going on? And how will they know if the sleep problems cause PEM or are the consequence of PEM? And then, the questionnaire goes even further into unknowable detail and asks people to identify the first most problematic, then the second most problematic, and then the third most problematic activity. I have no idea how I'd answer that.

Again, it seems to be about identifying individual activities so that the therapist can fix them - sleep hygiene for sleep problems; distraction for pain; CBT for demanding social interaction. But, although they acknowledge situations fluctuate, they don't really seem to understand that. Hanging the washing out is fine one day, but demanding another day. Maybe because I did some gardening and the supermarket shopping the day before, maybe I also have a viral infection (which might itself be the result of the exertion on some other activity in the previous days). The causes of PEM don't fit into discrete neat boxes, all ready for fixing.

This question is impossible to answer. Again - IT'S CUMULATIVE. And, again, I don't believe that a worsening of symptoms automatically equals PEM. And the scale seems to be some endlessly relative, individual scale - how will that help with longitudinal monitoring?

I think that they are asking the wrong questions, in an effort to produce boxes that are ticked. I think they should be asking people
1. Would you like some assistance to track your activity and symptoms in order to identify patterns so that you can understand your illness better?, and
2. are there particular symptoms or situations that you would like help with?
3. do you want some help to work out how to modify aspects of your life to allow you to get the most out of the capacity for activity you have?

Just have a conversation with people.
Click to expand...

Yes. I was thinking there might be n issue of trying to push a whole new definition of what the illness is through this s I’ve watched the proms come through and this is no different . But it might be their false beliefs / lack of understanding of it plus unwillingness to hear that new definition/get an understanding

I agree their claimed rationale/reason for this isn’t met because if it was to allow clinics to help pwme it would be questions like at the end of your post. Insight and doing exactly this kind of thing was what I did for years and that’s exactly what you do: ask direct qualitative questions that definitely answer the research question or need being claimed to be met , not try and proxy it with loads of quantitative ones you haven’t informed by very very significant exploratory research - I note that stage was skipped and not done with experienced patients, and I don’t think they want to.

But that is methods to the extent you’d be told not to apply gif the job if you couldn’t and didn’t answer that when asked informally ‘how would you approach x’ by anyone who might be your boss or leader in charge of project. So I’m confused by it not happening . The reason it’s basic method is to avoid leasing questionnaires and questions that don’t answer the research question or can’t provide the nuance needed to indicate what to change to/a way fireward.

I sometimes did surveys where every question past a point was an open box - that’s what you need if it’s a ‘what would improve it’ situation

I have major concerns if this is claiming to measure PEM then they darn well have to get it correct and they haven’t. It’s going to provoke less understanding even in patients of themselves of this not more and is creating the usual incredibly violating ‘can’t communicate, can’t be heard unless you’ll admit to our delusion you have a delusion’ coercion that has been used by those running the area in the past. And that is so deeply violating and sparklingly harmful and de existing that it cannot continue and be allowed to be pushed through these veiled means. MEA need to get smart to the ‘in the name of’ claims of ‘doing it to be easier to understand’ without it being PROPERLY market tested and proven by independents (not BACME marking their own homework by designing their own survey to us then only those who fill it in can count and only the questions they out and answer options can) overseeing an externally valid approach ie with qualified and representative respondents doing open critique - not skewing replies as this has.

but we know the author has an unwillingness and ‘boundaries’ to the level of disagreement with anything allowed which is coercion (dressed up in terms like ‘boundary’ is something inappropriate being pretended to be ‘ok’)

I didn’t hand over for these two to get a second stab at controlling who I am and every little innate part of me and my life. And MEA haven’t guarded me and my rights and have just handed that over to those who did wrong and won’t even acknowledge harm was caused nevermind will change to a focus on then learning doing better and focusing on avoiding harm. Just an entitled pair convinced that if they say it’s slightly different what they are imposing to last time then not caring about and silencing the harms done is ok. It has never been ok.

now I’ll spend the next part of my life with the who I am and what I’m allowed as rights and what I have to swallow to say I am to have any controlled by this pair ?

this isn’t an illness survey. MEA should have been saying they were campaigning against the behavioural approach- but this is all that is and is about trapping us all into a dystopia where we have to pretend and salute to pretending we have something we don’t to get crumbs… again.

bobbler · Oct 4, 2024

Ash said: ↑

Yes.

A coping strategy, for them.
Click to expand...

A way not to have to hear the real stuff so they can if they want carry on doing harm and pretending it bith doesn’t exist and isn’t the consequences of what they recommend med in the past

It’s absolutely about healing denial and whitewashing by those who can’t let go

MrMagoo · Oct 4, 2024

I’m actually seeing a future where we have to stand outside the hospital with leaflets saying “going to the ME/CFS service?” And handing out counter-propaganda. And we can’t even stand up or get there!

Amw66 · Oct 4, 2024

Ash said: ↑

Yes.

A coping strategy, for them.
Click to expand...

So much this.
We don't have any clinics , but the health care role is interchangeable .
It's always about the clinician.

MrMagoo · Oct 4, 2024

Amw66 said: ↑

So much this.
We don't have any clinics , but the health care role is interchangeable .
It's always about the clinician.
Click to expand...

They would be so demotivated if they didn’t help us get a positive outcome. Imagine having to go to work knowing you’re basically useless.

Sean · Oct 5, 2024

bobbler said: ↑

It’s going to provoke less understanding even in patients of themselves of this not more
Click to expand...

Which is their aim. More gaslighting of patients, especially new patients, who don't know the science & history of it all and are not equipped with the knowledge to fight back.

Trish · Oct 5, 2024

Tyson's MEA article said:

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.
Click to expand...

I've just re-read the MEA article introducing this version of the PASS questionnaire, quoted above.

This makes it clear, along with the title of the whole project 'clinical asssessment toolkit' that it's not primarily about medical care, it's about 'assessment'.

So what I'm seeing here is confirmation that all they are interested in is a data collection exercise for therapists running rehab clinics to 'assess' patients. And they have designed questionnaires that are easily influenced by therapist effect.

Sarah Tyson says they are going to 'double check it produces robust data'. I have no idea what process they will go through to do this. Any ideas?
They really should reveal what this entails, so we can discuss whether it makes clinical sense.

hotblack · Oct 5, 2024

Yes, the idea of what robust data means here is very opaque.

MrMagoo · Oct 17, 2024

There is another questionnaire CNA-ME
https://meassociation.org.uk/2024/1...q07IZM_zvalEzNTL0o_aem_59aMYD2Xck8ahY1K-J4A3A

Trish · Oct 17, 2024

Developing a clinical assessment toolkit for people with ME/CFS and clinical services.
Stage 5: Clinical Needs Assessment for ME (CNA-ME)
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. This includes people whose ME/CFS was triggered by a covid infection (i.e. long covid).

This is the final stage of a research study to develop a clinical assessment toolkit for ME/CFS. The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself. We are working with people with ME/CFS and clinicians in ME/CFS specialist services to co-produce a series of assessments which will help people with ME/CFS and services in clinical assessments, activity management, and service development. The previous tools have assessed people with ME/CFS’s symptoms, post exertional malaise, activity levels, and satisfaction with ME services. This assessment aims to measure people with ME/CFS’ ‘clinical needs’ – that is to identify the issues that are important to the patient and a priority to address as part of the treatment/management plan. It would be used as part of the assessment process and care planning. The results will also be useful at a service level for developing and improving services in the future.

We have devised a draft questionnaire, and the aim of this data collection is to test out it out, to check the questions make sense and produce good quality information. We will also explore how we can make it as short as possible while covering all the issues that are important to people with ME/CFS. If you would like more information about the toolkit project and some frequently asked questions (FAQs) please click here.

The survey takes about 10-15 mins 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. If you need help from another person, or another person to complete the survey on your behalf, that is fine. If you would prefer a paper copy or complete the survey by phone, or if you have any other questions, please contact Sarah on sarah.tyson@manchester.ac.uk.

The participant information sheet is found here .

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. Where do you live?

England

Wales

Scotland

Northern Ireland

Other Islands and Crown Dependencies

Somewhere else

3. Gender

Male

Female

Non-binary / third gender

Prefer not to say

4. Age

5. Time (years) since you developed ME/CFS/long covid

6. 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.

Amw66 · Oct 17, 2024

I find the survey times quoted laughable

it would perhaps be enlightening if clinicians had feedback on

how long it actually takes to complete for different levels of severity

how many breaks were required for different levels of severity

what was sacrificed activity wise to be able to do a questionnaire on each occasion a tab was opened and closed

if PEM was invoked

Perhaps then these things might improve

Trish · Oct 17, 2024

SECTION 2: CLINICAL NEEDS
This section asks a series of questions about what you would need from a service. Each questions asks whether you agree or disagree that you need each element.

THE SERVICE

7. I need information about what to expect from the service including the treatment/ management approach

Agree

Disagree, as this isn’t important or relevant to me

8. I need appointments to be flexible to meet my needs

Agree

Disagree, as this isn’t important or relevant to me

8a. Is there anything else you would like us to know about your needs?

9. I need to know who to contact for advice and support, and how to contact them.

Agree

Disagree, as this isn’t important or relevant to me

10. I need time and support to explain my situation and the difficulties I am having

Agree

Disagree, as this isn’t important or relevant to me

11. I need to be able to ask questions, express doubts and concerns

Agree

Disagree, as this isn’t important or relevant to me

12. I need feedback and discussion about whether I am doing ‘the right thing’

Agree

Disagree, as this isn’t important or relevant to me

13. I need checks to see if I would like/ need more information or to revisit discussions

Agree

Disagree, as this isn’t important or relevant to me

14. I need support to build my confidence to manage my illness

Agree

Disagree, as this isn’t important or relevant to me

15. I need information (e.g. leaflets, websites, webinars, or apps etc.) in a format I can understand and use.

Agree

Disagree, as this isn’t important or relevant to me

16. I need opportunity to ‘meet’ others with ME/CFS (this maybe in person, remotely or virtual)

Agree

Disagree, as this isn’t important or relevant to me

17. I need advice and support about keeping in touch with friends/ family, managing/maintain relationships. or breaking out of social isolation

Agree

Disagree, as this isn’t important or relevant to me

18. I need information about relevant ME/CFS support groups/ charities or other resources including advocacy support

Agree

Disagree, as this isn’t important or relevant to me

19. I need follow up support after discharge to see how I am doing e.g. follow up / review appointments

Agree

Disagree, as this isn’t important or relevant to me

Understanding ME/CFS

20. I need an explanation for my illness, symptoms and disabilities

Agree

Disagree, as this isn’t important or relevant to me

21. I need information about the likely prognosis and possibility of recovery

Agree

Disagree, as this isn’t important or relevant to me

22. I need a discussion and advice about other health conditions which may interact and impact on my ME/CFS. This may involve referral to other services.

Agree

Disagree, as this isn’t important or relevant to me

23. I need support to explain ME/CFS and my difficulties to my family/ carers/significant others

Agree

Disagree, as this isn’t important or relevant to me

24. I need support to explain ME/CFS and my difficulties to ‘officials’ e.g. employers, other health care professionals

Agree

Disagree, as this isn’t important or relevant to me

25. I need support to involve my family/carers/significant others in my care

Agree

Disagree, as this isn’t important or relevant to me

26. I need emotional and/or practical support for my family/carers

Agree

Disagree, as this isn’t important or relevant to me

27. I need information about how to obtain on-going support after discharge e.g. from GP or other services.

Agree

Disagree, as this isn’t important or relevant to me

28. I need support about medications e.g. symptom management or for other conditions that impact on my ME/CFS. This may include referral or signposting to other services.

Agree

Disagree, as this isn’t important or relevant to me

Care and Support Plan.

29. I need help to work out my needs and priorities

Agree

Disagree, as this isn’t important or relevant to me

30. I need support to identify and set my own goals

Agree

Disagree, as this isn’t important or relevant to me

31. I need support to develop an action plan to address my needs and priorities

Agree

Disagree, as this isn’t important or relevant to me

32. I need help to deal with the following limitations and changes to my life

Agree Disagree
a) recognise my symptoms
b) identify and manage my activity limitations
c) avoid going past my energy limits or ‘overdoing it’ (i.e. pacing)
d) identify and manage fluctuations, setbacks and relapses

33. I need advice and support on how to deal with the following symptoms

Agree Disagree
a) physical fatigue
b) cognitive problems/ brain fog (e.g. concentration, memory, communication difficulties)
c) pain
d) sleep disturbance (e.g. difficulty falling or staying asleep, needing to sleep during the day)
e) musculo-skeletal symptoms (e.g. weakness, clumsiness, cramp)
f) neurological symptoms (e.g. headaches, sensitivities to sound, light etc, altered sensation, tinnitus)
g) cardio-respiratory e.g. palpitations, breathlessness, chest pain, circulation changes
h) gastro-intestinal symptoms e.g. nausea, bloating
i) orthostatic intolerance/ postural orthostatic intolerance syndrome (POTS) - changes in heart rate, dizziness etc when becoming more upright (ie when sitting or standing up)
j) immunological symptoms (e.g. sore throat, swollen glands, allergies, and flu-like symptoms)
k) emotional symptoms (e.g. anxiety, low mood, frustration, anger)

34. I need help (e.g. information, advice support and/or aids and equipment) with the following activities

Agree Disagree
a) personal care (e.g. washing, dressing, toileting, nutrition)
b) domestic/ home care (e.g. housework, cooking, gardening, DIY)
c) family life (e.g. childcare, relationships)
d) work/ education (e.g support from employer/ college, reasonable adjustments, occupational health, union support, Access to Work)
e) benefits and social care e.g. universal credit, council tax benefit, personal independence payments, blue parking permit
f) mobility and getting around - including walking aids, mobility aids (e.g. mobility scooter or wheelchair) transport (vehicles, public transport)
g) socialising and leisure
h) communication (including reading, writing, social media)

35. Is there anything else you would like us to know about your needs?

36. Is there anything else you would like us to know about this questionnaire?

Amw66 · Oct 17, 2024

Even an undergraduate could do better than this -words fail me

MrMagoo · Oct 17, 2024

It’s bizarre isn’t it? I didn’t sleep well before I posted it, but it’s just….bizarre? What even is it?

Maat · Oct 17, 2024

Trish said: ↑

Consent (you must select all fields below to proceed)
Click to expand...

I came to a screeching halt after reading the 'fields' under the Consent heading on page 1 Info and consent and the About You page. I did not waste my energy reading the Patient Information Sheet or the rest of the survey form.

I cannot consent to this:

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.

Reasons:

This is part of a set of data which will be used for future service evaluation and available for other researchers long after the Department of Health and Social Care have published the ME/CFS Delivery Plan - government policy document on ME/CFS.

I do not possess psychic abilities so do not know what will be in the published Delivery Plan, i.e. what research recommendations will be made, if any, and medical education recommendations and actions to be taken, to name but two. It is therefore impossible for me to confirm that I have been fully informed on this. I am waiting for the Secretary of State of the Department of Health and Social Care to publish the summary responses to the Consultation and the Plan itself.

In the About page, section 6 sets out the proposed new disability severity scale under which I come in at 4-5 as an ME/CFS sufferer. My care package has recently had to be doubled in hours.

6. 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.
Click to expand...

Obviously, I didn't waste my energy proceeding further with the form.

That's 20 mins of my life I'll never get back.

MrMagoo · Oct 17, 2024

Maat said: ↑

I came to a screeching halt after reading the 'fields' under the Consent heading on page 1 Info and consent and the About You page. I did not waste my energy reading the Patient Information Sheet or the rest of the survey form.

I cannot consent to this:

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.

Reasons:

This is part of a set of data which will be used for future service evaluation and available for other researchers long after the Department of Health and Social Care have published the ME/CFS Delivery Plan - government policy document on ME/CFS.

I do not possess psychic abilities so do not know what will be in the published Delivery Plan, i.e. what research recommendations will be made, if any, and medical education recommendations and actions to be taken, to name but two. It is therefore impossible for me to confirm that I have been fully informed on this. I am waiting for the Secretary of State of the Department of Health and Social Care to publish the summary responses to the Consultation and the Plan itself.

In the About page, section 6 sets out the proposed new disability severity scale under which I come in at 4-5 as an ME/CFS sufferer. My care package has recently had to be doubled in hours.

Obviously, I didn't waste my energy proceeding further with the form.

That's 20 mins of my life I'll never get back.
Click to expand...

It’s important though - the consent is meaningless? Moot? It’s not consent.
You can withdraw but never remove your data? What in the dystopian, post-GDPR, Elon Musk is less problematic, data theft is this?

Maat · Oct 17, 2024

MrMagoo said: ↑

It’s important though - the consent is meaningless? Moot? It’s not consent.
You can withdraw but never remove your data? What in the dystopian, post-GDPR, Elon Musk is less problematic, data theft is this?
Click to expand...

I think that bit's fairly standard. It was also in the MAGENTA trial consent for parents of CYP, to which the kids were also asked to Assent. I looked at it when it was published I think I recall calculating that the kids' data under that consent would be re-usable until they were in their early 30s.

In DecodeME similar but research based on that dataset will have objective outcomes.

What also troubled me is how are they differentiating between ME/CFS data and Long Covid data in terms of service evaluation, taking into account the overlap of symptoms? The 'CFS/ME Management' service turned into the 'Fatigue' clinic incorporating Cancer fatigue for example.

In few years what Long Covid clinics exist now will do the same.

How can we be expected to consent to a service evaluation when we don't know what is going to be offered in that service in the next 6 months? Because I can't see any difference at all in the activity management therapy I received in 2011 to today which is now referred to as Pacing-up. This looks and feels like the Adaptive Pacing from the PACE trial. This is the south west all over.

Nightsong · Oct 17, 2024

In fairness not being able to remove data after it's been analysed used to be a fairly standard provision in research - and I assume it still is - because otherwise you'd have to repeat analyses after each patient withdrawal.

Some of the questions just aren't things that are necessary to ask: what kind of service wouldn't allow a patient to ask "questions, express doubts and concerns"? Others seem off-key - what health conditions may "interact" with ME/CFS - we don't know enough about it, mechanistically, to determine whether any other condition does or does not.

Is there no chance of getting MEA to reconsider this project? This seems to be something that is realistically only going to be used by teams of therapists in NHS CFS clinics following the existing service model.

Trish · Oct 17, 2024

A few comments on this explanation on the first page; my bolding:

Developing a clinical assessment toolkit for people with ME/CFS and clinical services.
Stage 5: Clinical Needs Assessment for ME (CNA-ME)
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. This includes people whose ME/CFS was triggered by a covid infection (i.e. long covid).

This is the final stage of a research study to develop a clinical assessment toolkit for ME/CFS. The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself. We are working with people with ME/CFS and clinicians in ME/CFS specialist services to co-produce a series of assessments which will help people with ME/CFS and services in clinical assessments, activity management, and service development. The previous tools have assessed people with ME/CFS’s symptoms, post exertional malaise, activity levels, and satisfaction with ME services. This assessment aims to measure people with ME/CFS’ ‘clinical needs’ – that is to identify the issues that are important to the patient and a priority to address as part of the treatment/management plan.

It would be used as part of the assessment process and care planning. The results will also be useful at a service level for developing and improving services in the future.
Click to expand...

This seems to be based on the premise that clinical needs are primarily served by a series of visits to a rehab clinic, production of a care plan, then discharge back to the GP. Hence it lists 'clinical needs' as being things about managing symptoms and life adjustments. It looks like it's based on an existing rehab program such as that run by Gladwell who is co leader of this project.
I can't see a specialist doctor led clinic finding it useful.

Maat · Oct 17, 2024

Trish said: ↑

A few comments on this explanation on the first page; my bolding:

This seems to be based on the premise that clinical needs are primarily served by a series of visits to a rehab clinic, production of a care plan, then discharge back to the GP. Hence it lists 'clinical needs' as being things about managing symptoms and life adjustments. It looks like it's based on an existing rehab program such as that run by Gladwell who is co leader of this project.
I can't see a specialist doctor led clinic finding it useful.
Click to expand...

My reading of it also, based on my experience in Bath in 2011 but without the care plan.

At that time this

This assessment aims to measure people with ME/CFS’ ‘clinical needs’ – that is to identify the issues that are important to the patient and a priority to address as part of the treatment/management plan.
Click to expand...

took place in the initial consultation with the service following GP referral, which at that time was only for Mild/Moderate patients of course. After which you undertook the 6 1hr weekly group sessions. Then final report back to GP stating how it went - here is your now severe CFS patient. End of the healthcare road except for GP management of symptoms anti-sickness, pain relief. Job done no further investigations except 6 month follow-up questionnaire which I was too ill to complete.

Bath was specialist led by Crawley who also oversaw adults. Given that she was based at the University of Bristol wouldn't be surprised if she oversaw their adult clinics as well.

Breaches of the 2007 NICE Guideline took place in my management treatment, as I subsequently discovered, in terms of no care plan and no follow-up care for severe patients. I still don't have either 13 years later.

From this 2013 national scoping exercise:

What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise | BMJ Open

In it they quote from the 2007 NICE Guideline

Diagnosis, investigations, management and follow-up care for people with severe CFS/ME should be supervised or supported by a specialist in CFS/ME.

Click to expand...

and this comment from the authors

Strengths and limitations of this study

Our survey received a 100% response from the 49 chronic fatigue syndrome/myalgic encephalomyelitis specialist services in the National Health Service (NHS) in England and all data queries were resolved via telephone or email.

The study collected data on adult specialist CFS/ME services only. Further research is needed to determine paediatric service provision.

While this study collected data on service provision, it did not collect data on clinical outcomes for treated patients. This limitation should be addressed by further research.

Click to expand...

Honestly can't see any difference between then and now. So to me, it looks like they're after clinical proof that rehab works, even for severe patients.

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

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

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