Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

@Sean, your comment:
"...CBT actively distorting cognition in patients"... yep, seems to me that's its aim.
Or, one could call it brainwashing.

ETA: a smiley face in a washing machine would be appropriate here!

 

I had some useful feedback from a UCL colleague today. They are using Fitbit type devices to monitor at risk patients after surgery - looking for evidence of complications like sepsis or pulmonary embolism earlier than symptoms show.

I asked how easy it would be to do complex analysis on patterns of activity to see if they told us new things about the kinetics of ME. The answer was that you need machine learning experts to plan analyses but that these people are around and interested in actimetry. They are probably actually looking for interesting questions like this.

Moreover, the clearest result from the UCL study was that altimeters are acceptable and easy to get people to use - as long as they remember to charge them. Not burdensome!

 

If machine learning people were interested in a project like this, it should be easy enough to collect large datasets with little cost. Millions of people out there already have a Fitbit or Apple Watch.

 

Sounds like a potential masters / PhD ?

ETA it may sound nuts but sports science could be a vehicle to operationalise something like this .
They have grounding in mechanics and some biology and use wearables .
As part of a team their various bits of kit may offer an insight and an opportunity to debunk the deconditioning myth.
It would very much depend on what constitutes the team .

 

Apple are very good about privacy, esp people's health data. In this instance though, that is a shame. If they had been able to read all this data via iCloud*, I bet you the elevated resting heart rates and related POTS physiology would have made for some compelling data (at global scale).

* HealthKit data is end-to-end encrypted, so Apple can't read it, even under legal imperative. They highlighted this — albeit obliquely — in relation to ovulation/menstruation tracking in their latest software — i.e. if certain States were to take an undue interest.

 

https://support.apple.com/en-gb/guide/iphone/iph5ede58c3d/ios

 

What benefit do you get from this? I've had over-the-reference-range platelets for a couple of years (but not dramatically over the range) and I don't know if I should be doing something about it. Naturally, the last time the NHS tested my platelet levels my result had dropped a bit. The top of the range was 400 and my result was 397, so it wasn't flagged and was ignored.

 

The numbers for severe ME sound high to us but really severe people will not have been in this study as they are too ill to be part of any trial.

Our surprise is actually because we are so used to how sick you are with ME that we underestimate our health compared to everyone else.

2500 steps a day is a very severe disability even if many people with ME are that sick most of the time while the rest are only that disabled occasionally. All our categories give the wrong impression of our abilities.

 

Failure of the Government Officials on the project board i.e. overseeing the project (it was paid for by the UK Government - civil servants lead the project oversight board). Of course, they should have been advised by the "scientists/academics" - lead Peter White Queen Mary University of London. It appears that the civil servants were scammed by the scientists/academics - knowledge imbalance. The civil servants should have asked --- increased hours worked, increased attendance in education/training ---- all evidence of "improvement". Guiding people to fill in a questionnaire --- with no objective evidence of improvement - scam!

Potentially the key thing is prompting the test group i.e. that they are getting the intervention which works:
"Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.[26]" - https://me-pedia.org/wiki/PACE_trial

 

Yes, Sir Humphrey and the survey comes to mind - you can get any answer you want --- if you don't care ---

https://www.youtube.com/watch?v=G0ZZJXw4MTA

EDIT - should have added this:
"Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism”.[26]" - https://me-pedia.org/wiki/PACE_trial

 

A Comprehensive Examination of Severely Ill ME/CFS Patients,
link: https://www.mdpi.com/2227-9032/9/10/1290/htm
S4ME thread: https://s4me.info/threads/a-compreh...-patients-2021-chang-et-al.22603/#post-378699

my bolding

I'm thankful FitBit is becoming part of studies.

 

The severe group of 6 patients was a combination of moderate-severe(4) and severe(2) for the statistical analysis.

Very severe patients weren't included in the study, and patients had to be able to attend the text centre 3 times over the study(I think).

From a quick skim of the raw data in the supplementary materials, the 2 patients whom I assume to be severe, had many days with fewer than 1000 steps and often much lower.

 

this is what I popped over here to discuss. These days I’m only up to following research via the ME Association podcast or YouTube. I’m curious what number of steps would seem right for Severe ME? I find I can’t sustain 300 steps a day, and I think in that number my sports watch is sometimes counting arm movements without steps (I use a wheelchair indoors). I’d say I’m going in between severe and bad-moderate ME. Though perhaps comorbidity eg POTS is keeping my steps lower than would be expected for my ME severity?

 

We have to be careful with POTS and its association with ME. It is a syndrome not a discrete disease just a set of symptoms that could have many causes. Long before POTS was identified not being able to stand for long was considered a core symptom of ME which was related to problems in the brain. I also think that panic attack being included on some of the lists of symptoms actually reflects what we would now consider the racing heart rate of POTS.

We may end up in the situation where some of the things that help many people with POTS who do not have ME as a cause would be bad for us. I believe that strengthening leg muscles is meant to help for instance.

The severity of ME has always been played down too much - look at this paper which talks about 1998 steps as average for severe. Researchers and medics rarely see severe patients so they compare us with society's standards for a severely ill and disabled patients. We, on the other hand, know how much better we are than the poor souls who are barely alive so think we have moderate disease.

Problem is that outsiders will hear us but form a mental picture of how sick we are by their standards. I became very upset during the pandemic when all those people with longcovid began complaining about how bad it was. Not at them in particular but at the way I had just taken things for granted for so many years. I had forgotten that my life was not great just because I am not tube fed or bedridden 24/7. I'd long ago stopped believing that being able to nip out to the newsagents was something I should be able to do.

If you have less than 300 steps you have severe ME approaching very severe if it is not because you are usually in a wheelchair. The fitbit picks up arm movements so it reflects doing something so a higher number of steps means you have managed to do more. The numbers can't be directly compared between people but it gives an idea of how well an individual is doing as it changes.

 

I can wholeheartedly agree that doctors have trouble understanding how disabled we are.

I find myself constantly trying to "market" my illness, desperately hoping someone will believe me when I say how sick I am. That's horrible. Nobody should ever have to do that.

 

Is it theoretically possibly by now then to basically take this and combine it with regular interval testing of the type in the just released LC-predicting study here: https://www.s4me.info/threads/plasm...sars-cov-2-infection-captur-et-al-2022.29710/

where they blood tested and analysed 90 things across 54 healthworkers with covid longitudinally enough to predict those who got long covid.

Both would need to be very longitudinal in my opinion due to the nature of pushing through taking its toll in long-term ways (e.g. if you 'play' your limits e.g. for 6mnths --> 'relapse' ie big deterioration with bad descriptor for it)

Ideally you'd add in heart rate and any other 'health measures' so you could see what correlated as useful measures and what on their own might be 'misinterpreted' either way without that added picture of data. The hard bit is capturing timing/order of these things re: thinking about the cart-before-horse crew. You'd hope enough datapoints (enough participants from enough angles) could crack this one.

And whilst it sounds like a lot I can say that as someone with ME, much of the medical stuff is what you'd assume in an ideal world would be happening anyway as part of a decent clinic - if they don't have 'the cure' they are looking into what it is you do have and seeking to understand it. The 'difficult' part of it ethically would then be looking at methodology that allowed and could accommodate medical advice being given where something is seen that could be addressed - without automatically it pushing people into the 'drop out/disqualified pile'.

But I'm thinking from a funding perspective if both might go ahead anyway with their own funding, then couldn't a bid go in for them to run under their separate entities 'as is' but with the methods built as such that the data can be used in a combined fashion (by each) at the point of analysis? 3 datasets (the 2 individual trials, and the combined analysis) and papers from the 2 trials in different disciplines. And more complete explanations for each as the other has the 'other half' of the picture. Maybe that is naive and imagine it is terribly terribly hard for all sorts of logistical reasons just getting things interdisciplinary in that way

 

Agreed. And that is a no-win situation.

There is a big lack of the basic sheets to cover the different severities in specific terms. Given there are then no clinics with actual clinician level to do this for anyone either. It feels possible, and would be a massive difference for patients in most circumstances - even if you could sacrifice the energy, the debility you have makes it physically hard to do and your believability undermined. And to be consisten and coherent across all the 'goodies' who aren't BPS website-wise (whether it is charities or CDC or whatever).

Having authentic sources to present rather than you having to fill the gaps and hope someone takes your word seems a bit of a basic missing. Generic doesn't cut it when severe is a different level of limitations and needs to describe vs moderate or mild.

WHy is often there just one generic page for the condition generally saying 'it's individual but' and maybe a few lines on 'people can get very severe' (which it is but there's a canyon between that issue and having basic disability descriptors for different levels - and common info about overdoing it moving people between them with certain predictable signs and paths for that). I know some of it is the information being undermined from being collected as it might for most other conditions but still.

No wonder we get such a bad time, it's not as if we've already been stitched up before we enter as all sorts so noone's more on the back foot to do this sort of thing.

 

I think the CDC is getting there. They know what they're doing. This is the very first paragraph of content on their ME/CFS home page:

There's also an entire page about severe ME. The information's definitely out there. We just need clinicians to be up to date.