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

MrMagoo said:
The NHS is barely serving people with Cancer, we shouldn’t really be surprised. Someone asked me today- what Consultants are in my local clinic and if I could see them. I laughed! I don’t know where in the UK has consultants running ME clinics. Not anywhere I’ve lived.
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True , but I don't know the details about how commissioning works however there needs to be truth and fact regarding the picture of what there is.

I don't think that and good intentions can be an excuse, or useful for the future, in hiding what a service is offering and to whom. And the problem is that there is such a problem with understand methodology and science in certain sectors that they proliferate results to populations there is no external validitiy or just cause for. When not to argue about priorities but the norm in an actual medical service would be those most ill being able to be monitored over the long term at least not this strange division of the population that leads to suggestions for the iller being based on research and stats from the least ill etc. Which doesn't help those who are at the beginning of their illness and more mild either because it means results are misleading - which is the vicious circle.

I don't think it can even be argued that these measures won't be being used to try and inform cases to continue on as is or expand more of the same and be used as recruitment tools or retrospectives that scrape off only those most able to travel and weather courses of various types. Which distorts planning information potentially.
 
MrMagoo said:
The NHS is barely serving people with Cancer, we shouldn’t really be surprised. Someone asked me today- what Consultants are in my local clinic and if I could see them. I laughed! I don’t know where in the UK has consultants running ME clinics. Not anywhere I’ve lived.
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I saw Prof Pinching in Cornwall in about 2000, at an ME clinic. He was good.
 
bobbler said:
True , but I don't know the details about how commissioning works however there needs to be truth and fact regarding the picture of what there is.

I don't think that and good intentions can be an excuse, or useful for the future, in hiding what a service is offering and to whom. And the problem is that there is such a problem with understand methodology and science in certain sectors that they proliferate results to populations there is no external validitiy or just cause for. When not to argue about priorities but the norm in an actual medical service would be those most ill being able to be monitored over the long term at least not this strange division of the population that leads to suggestions for the iller being based on research and stats from the least ill etc. Which doesn't help those who are at the beginning of their illness and more mild either because it means results are misleading - which is the vicious circle.

I don't think it can even be argued that these measures won't be being used to try and inform cases to continue on as is or expand more of the same and be used as recruitment tools or retrospectives that scrape off only those most able to travel and weather courses of various types. Which distorts planning information potentially.
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If the NHS wants ME PROMS, fine. I think they’re redundant, but that’s their business. I don’t see how it’s £90k of the MEA’s biomedical research fund’s business.
 
I've come late to this thread but saw at the beginning Pete Gladwell is involved & @Trish's wariness of him and I've skimmed through as much of the other comments about him as I could.
Just based on my personal experience, I don't think he should be involved in any ME Research.
While he was extremely helpful in referring me to Cardiology for PoTS in 2020, based just on fitbit data and a discussion of my symptoms, that's where his helpfulness ended.
When I contacted him in 2021 about my concerns with the Long Covid Service (which he sits on the MDT of, or at least did at the time) referring me to the Your Covid Recovery app (essentially an unsupervised GET programme) after only a 1 min sit-stand test that I couldn't complete and caused a severe collapse shortly after, his response was kind of 'c'est la vie'.
He's not my main contact at the ME Service but I had a f2f appointment with him in 2022 for a mobility assessment that the Long Covid Service had failed to provide. I provided him letters from the two physios I was seeing in early 2020 (before I got Covid/ME) detailing the various findings of muscle weakness and paraesthesia in different limbs. He thanked me, said they were really useful, photocopied them but didn't examine me! He tried to do a Beighton test just because I'd mentioned a lot of people I follow on social media have EDS & I was wondering if the wrist supports they use would be useful for me (who doesn't), all while I was saying "I'm not hypermobile. I've never been hypermobile". He admonished me for not trying hard enough, even though I'd just told him my tendinitis causes severe pain when I bend my wrists back.
He said I used my crutches well, which was one of the things I wanted to know, but I mainly wanted an assessment of my mobility *without* crutches.
Then he just told me to do some heel lifts, saying "it's neuroplasticity".
There was also a bit where I was trying to get him to examine my ?Sciatic pain from a procedure performed in the same trust where I think he was trying to hint (without examining me) that it was FND, although he wouldn't say the words.
I changed the follow-up to a phone appointment because I wasn't going to waste my energy again. When I said I hadn't really been doing the heel lifts (largely because I'd crashed after that appointment that was also on the hottest day of the year) and didn't find the appointment useful, he again brought up neuroplasticity and said something like "It just means the more you do something, the easier it is. That's all neuroplasticity is". Like, no it isn't?
Oh, and I brought it up in a Twitter convo recently with Karen from Physios for ME and she said those exercises are for strengthening the calf muscles, but my weakness is in the thigh muscles - as stated in the letter I gave him! So maybe he's not even a very good physiotherapist for general MSK issues.
Lastly, he must be responsible for the Bristol ME clinic's policy of not diagnosing ME in people who have Long Covid (see attached letter*).

Mod note: This post has been copied to the
Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell
and some subsequent posts moved to that thread.


*A copy of the letter is in this post:
The disappearance of ME/CFS
 
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Returning to the recent MEA article about this project, a couple of comments:

It opens with:

This week saw the publication of a study by Peter Gladwell and colleagues who reviewed the validity of the Chalder Fatigue Scale. They concluded, ‘There is a need for an assessment tool/PROM for clinical and research use in ME/CFS which has undergone content validation involving people living with ME/CFS'. The ME Association has commissioned just such a project which is being led by Professor Sarah Tyson, with Peter Gladwell and others as part of the clinical group.
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We have a thread discussing that study here:
Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell
I'm not going to start up discussion of that study here that's best done on that thread. What I want to draw attention to is the conclusion that the MEA seems to have accepted without question, that because one commonly used PROM is not fit for purpose, that means we need new ones. That does not logically follow.

It could equally follow that we need methods other than PROMs for clinical and research use. In fact that is what we have been arguing throughout this discussion, and it's falling on deaf ears.

Also, they are admitting here that the PROMs produced in this project are intended for 'clinical and research use'. Sarah Tyson has insisted throughout our discussions that the PROMs they are developing are for clnical use, not for research use. They really need to get their story straight on this.

The second part I want to raise as a concern is the quotes from patients that Sarah Tyson uses in this article to justify the usefulness of their new PROMs.
All the comments quoted have a similar slant - that the questionnnaires have helped the individuals learn more about the symptoms of ME/CFS and how it affects their daily lives.

This does not justify information about ME/CFS being conveyed to pwME via PROMs. If clinics are doing their job, they should be providing information about ME/CFS to patients, and the MEA itself has information in various forms that covers all the sorts of thing being raised in the comments.

I would say a PROM is a very poor way to convey basic information about ME/CFS such as lists of possible symptoms and what sorts of exertion may trigger PEM. Patients need that sort of information at the start of their diagnostic and management journey in a form they can take home and refer to, and if they want to, to track daily so they learn their own patterns.

Filling in a questionnaire once a year, or however often pwME are reviewed, may help focus what they want to discuss in the review, but if done from memory will not give a valid overview that can be turned into a numerical score with any meaning.
 
Trish said:
This does not justify information about ME/CFS being conveyed to pwME via PROMs.
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It doesn't justify information about pwME being recorded via PROMs either.

At review, patients should be allowed to focus on whatever is their main concern them at the time, whether it's the development of new symptoms, reporting back on attempts to manage particularly difficult symptoms, or finding they're in need of aids and adaptations, facing potential loss of employment or forced abandonment of studies, etc. If the clinics aren't formally capturing data like this, no progress will be made on understanding variations in the natural course of ME.
 
I think - confusingly- two quotes were from Gladwell’s report (TIMES) and the other two were from Tyson’s PROMS

The whole article is a hodge-poge back and forth about the two very separate works actually
 

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MrMagoo said:
I think - confusingly- two quotes were from Gladwell’s report (TIMES) and the other two were from Tyson’s PROMS

The whole article is a hodge-poge back and forth about the two very separate works actually
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Confusing, isn't it. They are both part of this project.

TIMES is the symptoms one that was run in November 2023. We don't seem to have had much discussion about it:
https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/

PASS was the second one that we have discussed a lot more, as it was supposed to be about PEM, but muddles together all 'symptoms after exertion'. This is the one our members have heavily criticised.
https://www.s4me.info/threads/uk-me...ialist-services-2023.33221/page-9#post-515595
 
Trish said:
Confusing, isn't it. They are both part of this project.

TIMES is the symptoms one that was run in November 2023. We don't seem to have had much discussion about it:
https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/

PASS was the second one that we have discussed a lot more, as it was supposed to be about PEM, but muddles together all 'symptoms after exertion'. This is the one our members have heavily criticised.
https://www.s4me.info/threads/uk-me...ialist-services-2023.33221/page-9#post-515595
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Well, yes I do think they’re very obviously related

TIMES started in Manchester where Tyson is based
What a sticky mess
 
The project funded by the MEA and led by Tyson and Gladwell is creating several PROMs. The first two are TIMES and PASS. This is the project Sarah Tyson wrote about in the latest MEA article, and quoted from pwME who filled in the two questionnaires (PROMs)

The separate Gladwell study referred to at the beginning of the recent MEA article is not part of the MEA funded study. It is referred to in the article I think in order to try to justify the MEA funding the study.
 
I've been exploring some of the current BACME guides, all of which have been updated or written since NICE 2021. Of particular relevance to this project:

The BACME ME/CFS Care and Support Plan Guidance, December 2022
https://bacme.info/wp-content/uploads/2022/12/BACME-Care-and-Support-Plan-Guidance-Dec22.pdf

This includes template care plans for adults and for children. I have only looked at the adult one on pages 14 to 22

It is recommended that the care plan be accessed online by both clinicians and patient in advance of consultations and reviews so the patient can fill in in advance.

Sections include:

name and interests

family and carers

medical history

symptoms: A detailed section on a large and detailed range of symptoms, including PEM, each with yes/no, scale 1 to 10 for how much it affected you over the last month, and tick box for whether the symptom affects level of activity.

boxes for the pwME to list things that make their symptoms better and worse in their own words,

a list of activities of daily living and mobility, with boxes beside each for the pwME to write in 'help in need and now often' for each.

Then there are boxes that the pwME can fill in headed:
My health and well-being goals and aspirations
My information needs - What would you like to know and how would you like to receive information to support you.
Actions agreed with my healthcare practitioner (Option to Include a Wellness Recovery Action Plan example from North Staffordshire Combined Healthcare NHS Trust)
Managing flare ups or setbacks (Specific actions to take when I experience worsening of my symptoms)
______________

My comment:

As far as I can see this is a suitable way of collecting all the information that this MEA project is designing PROMs for, but is specifically designed purely for assisting pwME and clinician to communicate in a way accessible to both online so it can provide a ready summary of information that should help focus the consultation. It has the big advantage over the PROMs being designed in this project that it is openly available at any time online for both patient and clinician to fill in, and does not attempt to serve the dual purpose of service evaluation or to provide any statistics.

I see no reason that makes sense to me for the MEA to have funded an alternative, and from what I've seen so far, inferior version of information gathering in the form of PROMs. for what is already available from BACME. Why would the MEA spend £90,000 reinventing the wheel, if, as they claim, the main purpose is to help in clinical care.
________________________

Perhaps the answer comes in the second BACME document I've looked at:

BACME severe ME/CFS guide it says on pages 42 to 43:
https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf

Quote:

Section 6: Outcome measures

6.1 Why use outcome measures?
• As a therapeutic tool, to allow therapist and patient to track and reflect back on any improvements in the individual’s recovery process
• To evaluate the benefits of service input, for example, to produce data to feed back to commissioners
• To generate health economic data to inform decision makers within the NHS
• To provide evidence to funders

It is important to recognise that completing questionnaires can take a lot of mental effort for a patient who might be only able to tolerate a few minutes conversation at one time or who may have 'brain fog' which makes reading and writing difficult. Nevertheless, for the reasons given above, we suggest that all services should consider incorporating basic outcome measures into their work with severely affected patients wherever possible.

Outcomes may be recorded by patients themselves (Patient reported outcome measure - PROM) or by Clinicians (Clinician reported outcome measure - CROM), though the latter can be carried out with the patient.

6.2 PROM (Patient reported outcome measure)

The BACME 2023 National Services Survey shows that there is a wide range of outcome measures being used in specialist services. Many services continued using tools included in the National Outcomes Database established in 2006, despite this central collection of data no longer being operational.

Commonly used measures include:

SF36 Chalder Fatigue Scale
Pain severity measure
Clinical Global Impression Scale (CGI)
Hospital Anxiety and Depression Scale (HADS)
pHQ9 Depression Questionnaire
EQ5D 5L Self-efficacy measure

BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services.

My bolding. End of quote
__________________________

The MEA announcement of this project quotes Sarah Tyson:
https://meassociation.org.uk/2023/0...nt-toolkit-in-nhs-me-cfs-specialist-services/
ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services
May 8, 2023

“I am delighted to have received this grant from the ME Association and look forward to working with the team, with people with ME/CFS, and with clinicians to co-produce a clinical assessment toolkit.

“The tools will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”
___________________________

I hope someone from the MEA can clarify this, because I think we've been misled.
 
Trish said:
Actions agreed with my healthcare practitioner (Option to Include a Wellness Recovery Action Plan example from North Staffordshire Combined Healthcare NHS Trust)
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A wellness recovery action plan? Why didn’t I think of that 32 years ago? I’ll get started tonight.

This post has been copied and the following discussion moved to a new thread: Wellness Recovery Action Plan, as recommended by BACME, UK
 
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The wellness recovery plan thing is in brackets as an optional extra, I assume for those who are asking for help with psychological symptoms. It's not part of the care plan.

My point is that the care plan document already exists to cover everything this project is covering, so why reinvent the wheel, if the intention is to help with care.
 
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