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

Detailed recording ought to be useful for research but the issue here is how people should be assessed in routine practice. Until we have evidence of benefit of one action in one situation and another in another I see no point. People should see a physician who can listen to and advise on any specific problems they raise, check alternative diagnoses, activate OT support etc. All the things physicians did forty years ago and presumably still do. A questionnaire just gets int he way of focusing on what matters at the time. So would a long actometer read out, I suspect.

 

The monitoring should be possible, but what would you do with it?

For asthma and diabetes we have well documented treatments that provide evidence for doing this in this situation and that in that situation - more bronchodilator or more insulin maybe.

For ME/CFS we don't have that. We don't even have any data showing that pacing according to monitoring of activity is helpful. Patients develop an idea of how to pace but who knows whether some numbers on an App are more use than how you feel today?

Everyone wants to measure things and everyone wants to find reasons why this happens or that, but measuring things and providing reasons why this happens are exactly the things that are wrong with current rehabilitative treatment paradigms. Recommending measuring things when we don't know it is any use is what we are up against.

But I would agree that what are desperately needed are research studies that fin out if measuring things is useful.

 

This really gets to me. Paternalism at its worst.

Michael J. Fox says “Parkinson's patients are the experts on what we have. We have a responsibility as patients to share our experience — what works for us, what we respond to, what we can contribute to research.” But then he had to set up The Michael J. Fox Foundation for Parkinson's Research to make any progress

You can read about apples all you want, but until you eat one, you haven't got a clue what it tastes like. Which is why researchers need to listen to patients as there is a chasm in understanding between what we experience and what they think we experience.

This all feels like rearranging deckchairs when we should be building life rafts.

We don't need new ways of measuring - we have so many ways - we need curiosity about why this is is happening and how to fix it - or at least not make it worse and not adding reams of complex admin.

 

I completely agree, but the challenge is that Sarah Tyson... IS a patient. And the mother of another patient. Russell Fleming is a patient. Keith Geraghty is a patient.

Clearly it takes more than simply being a patient, to understand why PROMS arent the ideal thing

Just to clarify... not intending anything personal to any of them with that comment, just wanted to illustrate that its not as simple as patients vs researchers/rehab professionals

 

Yes I agree absolutely on this, but it need to be done as a research exercise to see what predicts what.

 

Oh. Oh heck.

Stupid question, but has the S4ME letter been sent to Keith and Russell as well as the trustees..? Keith seems to be pretty switched on, so I understood, so am surprised by this.

Russell and MEA seem to be focused on patients on the mild scale, but surely even at that level a 98 question form would be a challenge?

 

I am right that Keith is a patient arent I? just suddenly had a moment of doubt but dont i remember that Wessely etc discounted his research because of that? or am i getting confused with someone else?

 

To me, there might also be an opportunity to work on something sooner rather than later, iron out as many of the creases as we can, and then it's available as part of post-treatment monitoring when we do have potentially useful interventions being trialled.

If somebody who likes partnership working is running a trial, a tool like this might even look good on a grant application as an experimental part of it, run in parallel with whatever conventional monitoring the PI plans to do.

 

In a sense maybe, but what we normally call research is investigation that reliably transfers to a general situation.

And when it comes to the individual we have to face the question as to just how reliable these conclusions are about what helps pacing. How can we be sure that the change in tactics relating to concluding x causes y led to a better patch because x causes y. Maybe actually p causes y and x causes z but there is enough overlap for it to seem x causes y.

The point being that patients accounts of discovering what works have to be treated on a par with therapists accounts that they have discovered what works - GET and CBT and LP - unless we have reliable evidence that can be generalised.

I agree that if I had ME/CFS then I would probably get an actometer and try to work out how it might help me pace. But the exercise here is devising a monitoring format for general use. That needs a reliable evidence base.

 

We certainly could, but it falls on deaf ears!

 

I’ve used free trackers like Bearable in the past to track symptoms. I often can’t speak so an app is preferable.

There’s an issue with your idea regarding “advice given” as what advice would the NHS give to me?!Manage your symptoms? Try pacing?

 

I’m happy with the reports which visible spits out, and I can request further CSV symptom data extracts if I wish. I could do that and crunch the data. Absolutely no GP or Consultant would be interested.

I think Tyson, Gladwell, want to do what they’ve always done, and we’ll get what we’ve always got. And they want my fundraising cash (on top of an NHS salary) to do it. Shame on the Me Association

 

The issue no one talks of is coercion and all of the forms that come under this (social pressure , culture, all these links to schools, benefits, employers everything on which someone’s ability to live relies)

And these measures not striving to protect safety of those who will be handing over what will be treated as exam results as much as medical exam results. All activity logged against their name as a record inferring all sorts. If someone will lose their job if they aren’t seen to improve to start getting back to work that’s going to coerce results. Do you get forced to say you managed to increase something and it isn’t finishing you off so you don’t lose your house and that gets logged as ‘treatment worked’? Are they solving people getting pushed into increasing - whatever it does to their body- with no responsibility from the HCP if that leaves them more disabled 12months down the road?

These things shouldn’t, and wouldn’t in any normal clinical context of other illnesses, be being fed off all of the place.

along with no objective measures that show the actual health and physical function - just either short term ‘can’ or subjective self-report ‘did’ behind which many life sustaining pressures (or eg ‘we will remove your freedom’) might be levied