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

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.

"The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services."

 

Prof Sarah Tyson works in rehabilitation, has done some work with Physios4ME, and recently wrote a letter with David Tuller in response to Saunders et al (2023): “A new paradigm is needed to explain Long COVID.”

Dr Mike Horton works in psychometrics and scale development/validation.

Dr Peter Gladwell is a physiotherapist working in the pain / ME/CFS service in the North Bristol NHS Trust. He's also active in BACME.

 

Sounds good. On the other hand, you can lead an NHS specialist ME service to toolkits, but you can’t make them think.

 

I am mortified at seeing this funding... He is a physio specialising in psychological approaches to pain management. Covid as well. Never mind NICE and ME. Also what are IOM doing here...?

 

Yes, this is essentially my observation too.

 

really? the wording implies these 'gold standard' techniques are already known... they arent, at least not by Peter Gladwell, or anyone at Bristol from the reports i heard, or Bacme, although I'm willing to bet he & the rest of BACME believe they know exactly what they are.... and therein lies the problem

Edited to add: Am happy to discover I am wrong, but i'll believe it when i see it

Edited again to add: For those who may not read all the posts on this thread... I misunderstood the press release so this comment is moot. And was not intended to be personally derogatory about Dr Galdwell. I decided not to delete it though because its qouted later, but clarification can be found in my post #80 at bottom of page 4 (sorry am starting to crash & my brain wont let me have the info to remember how to link to it )

 

As best as I can tell, this "gold standard" trope simply means EBM. Which, yeah, basically means "plastic-painted gold tchotchke" than actual gold-plated. So much marketing and hype in this profession. They take the absolute least reliable, most biased and ineffective, methodology known and call it "gold plated" as if it means anything.

I'd personally pass on this fake gold academic rococo stuff. It's made to look expensive, and it is, but it is strictly ornamental.

 

They’d read that and just assume you have a gilt complex.

 

But what about those people who are very sharp or fit to begin with but have really bad PEM - it is not unusual at all for someone to be able to 'perform' far better than normal people, yet be utterly debilitated due to it for very long periods of time. In fact one might say there are large numbers of pwme who had a particularly bad time not being understood or spotted due to this 'performing' meaning that they go under the radar because even with massive disabilitty their output - which is often when many get bothered - apprently doesn't get low enough people get concerned.

With psychometrics etc I'm very much hoping that they are focusing on PEM and on 'in fatigue' vs not etc and not some silly missing-the-point stuff.

Don't get me wrong, something is urgently needed in this area - and ideally should be something that is done independently of the clinics themselves so that their self-assessment stuff ends. I don't see why it needs to be done this way with BACME type individuals involved at all when you think of the online/remote possibilities and people like @PhysiosforME and other possible researchers e.g. cognitive psychology etc potentially being able to at least come up with some things that could better measure things more relevant to ME, in more appropriate settings and timings (eg if done at home then you can do at timings when either 'in PEM' or 'not in PEM' or whatever vs a clinic visit)

 

The fact that an ME charity funded the development may mean it will be harder to argue they are less suitable in the future.

ETA: And it’s likely the MEA will say something positive about them when they are published. It’s somewhat natural for a charity to want to promote their work.

It will be interesting to see are they solely subjective measures which as we know can be influenced by all sorts of biases.

 

Yes sorry I should have said that I was in agreement with what you were saing as gist, but 'being pedantic' on those points (just because I agree that is where it should be measured but really don't trust that lot - who've run old-style clinics - for encouraging 'robbing peter to pay paul improvements in certain tests whilst people have to lie on their backs most of the time in order to do/fit in whatever practice to achieve said improvement).

I'm not sure in those hands 'capacity to function' when it is not as an 'in comparison to' ie 2nd day of CPET or tired day of a reaction test or psychometric should be being used at all.

The disability level is purely as you say what happens when someone is in PEM, has overdone it, the drastic reduction in abilities and limitations that happen/the inability to push through or over-exert without such payback/not able to 'get fitter' in that way.

I just wouldn't trust too many of the people who have been involved in CFS/ME in the past to not plump for the easy but completely wrong measure of going for someone's 'peak' ability in any of these things and again them managing to miss the point with the condition or define it as the opposite to what it is. It absolutely needs to be a collection of things and the method and timing needs to be correct in order to avoid the 'teaching-to-the-test' habit many of these clinics/clinicians seem to have sadly gotten into.

 

I'd say the disability-level is someone's threshold (vs where they were according to the disability scales) vs what happens when they breach that included in it. I assume that includes both as it measures 'amount of time' or wat you can and can't do etc. No matter how low that threshold, and yes, with horrible symptoms and debility already, we have an issue where if 'measures' are not looking at the threshold itself and whether someone is able to do more without breaching it then claims of 'recovery' or having improved them are just cons.

There will be people who could do a decent 100m sprint but are stuck in bed unable to move or think for 4 days after hoovering a room lightly and can't get around a shop. SO what I have issues with is someone doing tests based on 'can you sprint' or 'can you hoover' without instead measuring the aftermath. If people are having to travel or face certain types of people in thse tests then the results are warped into people having to be on their best of days just to attend and getting cajoled etc. I'd feel far more comfortable with tests being developed that could dictate the 'run-up' or timing ie whether you are in PEM or not by being able to be done remotely or at least hyper-locally vs something focused on it being in a clinic with someone who isn't a proper physician that thereby means someone must be having a good day to have got there at all, and the 'afterwards' part ends up not being looked at.

There is also the issue of you can make someone feel more comfortable with good pain management perhaps, and I'd be 'less fatigued' if I had 4 weeks where I was able to be in threshold than when I wasn't, but that isn't 'recovery' or improvement and we've fallen foul of that type of confusion being built into CFS claims.

And the measures need to be more than getting someone to do a 2min taught-to test that captures one thing someone has practised with them and told them implicitly to prioritise over other essential things, in particular the fact that someone might take 3 buses the first time and wait for 1hr in the waiting room then by the time they've realised how much the journey affects them are getting a lift and going straight into the test without a long wait.

 

I am unclear what the purpose is here.

If the idea is to monitor how PWME are getting on I suspect the best way to do that is what I always did for PWRA - I asked them how they were getting on. They would tell me all sorts of different things that mattered to them at the time. I am not sure why one would want anything else.

If the idea is to judge effectiveness of treatment, that needs trials, and is subject to all the problems we have discussed over the years.

If the purpose is to provide 'audit' evidence of a good service then I am very sceptical and doubt that charities should be spending money on healthcare politics games. And rapidly you end up with justification of what professionals like to think helps, without proper evidence.

Maybe there is more to it but I have not seen the proposal. The use of the term 'gold-standard' is certainly a bit of a heart-sink.