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

Thank you for confirming Sarah, it is interesting to just help try and get my head around/picture it. The more I think about it and try and do so the more complex I realise it all is for you

 

I'm really glad that you've been involved in this and bring that on-the-ground experience. I find/think the work towards developing physiological measures in a home environment one of the most important things in making sure we get to the bottom of the condition, but imagine it isn't 'the easy way/road' to do research so am watching all of this with interest for what is learned from it both in data but also the insight it provides on what is possible or tricky things to watch out for with different methods etc.

I imagine that there are lots of catches and issues that you can only anticipate from being there and trying to deal with them at the time, so it is such important work which should represent quite a big move forward in innovation and I hope that more will be funded to keep this developing.

 

Bravo Jonathan... you echo my thoughts entirely. So what is happening, where is the DHSC NICE GRIP development going?

Slow boat to China comes to mind!

 

There is another issue here. Consideration for the severely affected.
This morning I did a literature search on PROMS.

https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2175579
Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome
Bethan Jones
,
Corin Bourne
&
Peter Gladwell

Received 04 Oct 2022, Accepted 19 Jan 2023, Published online: 07 Feb 2023


Danger of suitability and use of PROMs!

Full article: Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome
References NHS clinics following 2007 NICE...!

https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2175579#:~:text=Limitations of this,be quite different.

"Limitations of this study relate to the sampling method.
For example, sampling from an outpatient service will have excluded potential participants who are being impacted by activities they are no longer able to do, because they are not well enough to complete and return the questionnaires, or even access the service in order to have been eligible to complete the questionnaires.

Therefore, patients severely affected by ME/CFS may not have the energy resources to participate and are excluded from research as a result.

We cannot assume that the participants are reflective of the wider population of patients living with ME/CFS who have not accessed the service for other reasons, for example as a result of inequalities of access as a result of protected characteristics such as learning disabilities, and ethnic background.

We also have a limited catchment as a result of being based in England, and the list of impacted activities in different populations around the world could be quite different."

 

it is a fair point re demographics that you want included too: those who are more severe often get implicitly cut out by things like this as even a long-seeming deadline would require a lot of pacing and they’ve a harder to describe situation, those with more experience would also need more time as they have more to write ironically meaning they’d be disadvantaged by early closing, ditto for those who are having to continue to work or have responsibilities above their level of mE who are exactly who need to be included as the reality for most younger people has been that dire situation where pacing is made impossible whilst advice ‘in theory’ might be given to the person because employers and other services aren’t onboard.

I’ve seen early closing happen a few times, including the physios for ME pilot for the home one so it isn’t specific to this and obviously over application is an issue which needs to be flagged so future projects for ME can bear this in mind when designing processes. First come first served doesn’t feel an ideal for getting the best cohort for many things. I don’t know how you’d filter down using other criteria but it would be possible and maybe I’d an ME-sector issue to discuss.

I do think having some ME methods groups ongoing that overarch all projects and charities etc snd just can note these issues, along with issues such as infouencability and exclusion of those more severe being better understood eg in those who just think throwing many long surveys at people to fill out is fine or doing a focus group at pace and timing of well people etc - so lots of really fundamental stuff for it to discuss to ensure the more severe and experienced don’t get paternalists by those more well and in better situations who perhaps would bring the reality such people could of the on-the-ground situation of unsupportive family partners financial situations etc that might be more if the norm than exception gif those with ME.

 

This is so important and I have real bee in my bonnet about the severe being properly included with design of research and patient input focusing on being doable for them and not the other way around as there are accessibility issues. Services need to be built in the more severe and experienced not the luckier (situation-wise) and milder or who’ve less to contend with (e.g. issues of finance, employers, other support) so design needs to focus on getting the right people into the design process, in order that when and should those get worse or have such issues it is there or anticipated or understood rather than a service that can only deal with 'non-complex' when that really hardly exists long-term. It is all tickety boo often with supporters or situations until people actually need to ask for adjustments or say no to something or situation changes and that disability actually means you can't just pretend-norm with a smile on your face then go home and crash - and if services don't know that things get severe and worse then we'll still end up having the over-optimistic and brave-faced don't worry everyone else comes first stuff because patients won't realise how important it is they avoid a decline.

This is an issue with many groups yoo where milder members do not even realise they paternalism by having barriers to participation and when someone struggles with their speaking might finish their sentence or listen less making assumptions for them rather than realising how precious such little insights from the horses mouth are and how you need to put effort into hearing.

there is nothing fir severe currently which is ridiculous for a medical disease and means those who are milder have their treatment in a loop because no one who is worse is seen so people think mild is as bad as it gets and don’t understand the very difference disease ME is when you are over threshold and worsened vs in fortunate situations when mild. We will never be believed of the illness not minimised if pwme don’t get behind those who are severe being helped to have places on these things rather than wanting the voice themselves not realising they need those who are worse to show ‘this is what happens if mild/moderate get over exerted and asjustments etc don’t happen’

 

Yes forms like this often have tables collecting info on these characteristics for monitoring of minorities of equality and yet no standard exists for the condition itself

 

The form is no longer available. Does anyone have a copy? Trish?

 

I suspect this high number is an indication of how bad1y the professiona1s have done so far and how 1itt1e they understand patients with ME/CFS. I'm not sure you wou1d get this c1amouring from patients to participate in this sort of research in other medica1 conditions.

 

Dear All
I'm afraid it is beyond my technical skills to work out how to reply individually but to explain why we closed applications to the advisory group.... am advisory group usually has 6-12 members and I thought some extras would be helpful as it is likely that not everyone will be able to engage all of the time. So I was planning of recruiting ~20 people. When working with people with other conditions I would expect this to take several weeks. Hence the original closing date. But we got ~150 applications within a few years. So, having checked we have applications covering all the characteristics we wanted to include people with very/severe ME, I closed the applications to prevent more people spending their energy on an application with very little chance of success and my energy demands too. To choose members I propose to pick names from a hat until we have good representation of all the characteristics. I'll be contacting folk over the next couple of weeks
Yes Trish, we have your application and ANO who mentioned Science For ME.
Yes, I've seen the read on the Norwegian measure, which was very helpful and thought provoking.

 

Trish - we already have a group who are doing this. All of the research team (ie the co-applicants on the grant) except the statistician have personal experience. They work with me to oversee hte whole research process. The aim of the advisory groups is specifically to inform the the development of the tools