The ME Association Clinical Assessment Toolkit (ME-CAT) and app (autonom-e)

Utsikt said:
I constantly get asked «what’s your plan?». Like stop making me into a project and just let me live. There’s this implied devaluation of my life, that I can’t possibly accept living like this, that I have to always fight it.
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I just got told today that I'm "fighting" the illness just because I found a hack for my MECFS flavour. It's very ableist language, but at least in this case I know they meant well and a lot of people just don't know what else to say. And annoyingly they think every good day is one step towards gradual improvement.
 
Sean said:
I just meant it as the principle we should be aiming to quantify things that can be meaningfully quantified. A core part of which is figuring out what those things are, and what they are not.

Endless rounds of self-report questionnaires, and layer upon layer of interpretations of it all, are certainly not.
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I tried looking for whether there is a formal concept describing this, and it doesn't seem so. It's a combination of several fallacies that hasn't been formalized into a unified concept. Bits of "lies, damned lies and statistics", some mathemagics/scientism, metric creep (as if there is a real meaning in having a 5.4 fatigue score that makes it actually different from a 5 or a 6, neither of which mean anything anyway), some reification (mainly the act of turning qualitative ratings into arbitrary "quantities"), lots of Goodhart’s Law (making a target out of a measure makes that target useless as it becomes a goal in itself), all basically the process of turning vibes into math. Maybe vibism would work?

Since no one has bothered making this into a coherent argument (could be something worth writing about, @ME/CFS Science Blog?) yet, Gemini came up with a concept that I find captures this mess rather well, fits with the years of this fallacy dominating everything psychology touches, and most of evidence-based medicine:

The Axiom of Arbitrary Rigor: The more subjective a concept is, the more likely humans are to apply complex mathematics to it in an attempt to distance themselves from the responsibility of having an opinion.​

There is clearly a lot of compensating going on in this discipline. It's like the perfect machine to polish turds, a perfection that is itself a bit meta in that there is no amount of doing this again and again that changes the fact that this machine only ever produces turds, so the process of the turd-polishing machine itself is nothing but a turd-polishing process, and the current state of the turd-polishing system is itself the output of such a turd-polishing process. It's polished turds all the way down.
 
OrganicChilli said:
I just got told today that I'm "fighting" the illness just because I found a hack for my MECFS flavour. It's very ableist language, but at least in this case I know they meant well and a lot of people just don't know what else to say. And annoyingly they think every good day is one step towards gradual improvement.
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Sure, they might have good intentions, but it’s about as inappropriate as telling a widow(er) that everything happens for a reason, or that Diety X has a plan for everything.
 
Sean said:
Point taken about the dangers of trying to mindlessly quantify things.

I just meant it as the principle we should be aiming to quantify things that can be meaningfully quantified. A core part of which is figuring out what those things are, and what they are not.

Endless rounds of self-report questionnaires, and layer upon layer of interpretations of it all, are certainly not.
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Which is presumably why real specialists tend not to use questionnaires to collect 'data'. They ask patients how they've been doing.

In chronic disease, they need to decide whether to intervene or leave under observation. So they find out whether the symptoms are better, worse or the same, and how the patient is getting on with management and treatment.

That's essentially all that can be done, so it's all that's required.
 
Sean said:
The aim is to identify, understand and quantify people’s symptoms and disabilities.
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I keep saying this, but I don't understand why we are reinventing the wheel and not using FUNCAP, but also wasn't Jamie Seltzer doing this with the Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease)? What happened with that project?

Also, the clearly don't want to understand people's symptoms, since they keep asking about fatigue and whether you can do the hoovering. Completely missing the point.
 
Kitty said:
it doesn't fit with political priorities and they want government ministers onside.
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I fail to understand the stupidity of this;

The government are desperate to get people back into work.

Something like 1.2 million people have Long Covid and ME/CFS.

Successive governments won't fund research for treatments because they say they can't afford it

But they will continue to waste money on clinics that achieve nothing but annoying the patients and making them worse.

Patients are not returned to work; money is wasted on pointless psychological research, and pointless useless clinics.

Without treatment people cannot return to work.

Without funding research into treatment that just won't happen.

More of the same but worse is a recipe for continued failure on a larger scale and this project seems to just be industrializing that.

This is the something principle meets the sunk cost fallacy; something must be done this is something, more of something is better.

I am so sick of this
 
JellyBabyKid said:
The government are desperate to get people back into work.

Something like 1.2 million people have Long Covid and ME/CFS.

Successive governments won't fund research for treatments because they say they can't afford it

But they will continue to waste money on clinics that achieve nothing but annoying the patients and making them worse.

Patients are not returned to work; money is wasted on pointless psychological research, and pointless useless clinics.

Without treatment people cannot return to work.
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Ironically, they just don't want to do the work to get there. It would very informative to see what discussions actually happen in secret behind closed doors. Publicly a lot of people are pushing the lie that they do have treatments, but we just 'resist' them, or whatever. This has been reaffirmed yet again out of Long Covid, out of total failure, but no one in the industry seems to have the courage to plainly call out popular bullshit. Popular wins over correct every single time, and medicine is no exception.

I doubt this is what's actually said privately in boardrooms and meetings. Not entirely anyway. They can't possibly not be aware that none of this works, but I guess that everyone is content pretending anyway. Maybe enough of them do believe it, it's so hard to understand how or why. Most likely they do believe it, but with no data supporting it it should still be obvious that none of it is real to those who are only looking at it through evidence and data. Though it's not as if people believing in things that don't work, even with decades of evidence making it indisputable, is rare. Humans gonna human.
 
Nightsong said:
I know that, and you know that, but I would still love to see the trustees of the MEA try to explain why they're funding research by someone who believes that pwME need therapists to help them set goals, what the evidence base for goal-setting in ME/CFS is, and which "treatments", precisely, Tyson is referring to.

Like I said, it would be most illuminating. I'm sure many of their ordinary members would have questions.

Another good question would be: who are the "clinicians' advisory groups"? I think I know the answer to that one, but, again, it would be good to have it on the record.

"Physician-led services" is a red herring. MEA have long said they're in favour of that. Some of the psychobehavioural clinics have a physician who is either responsible for diagnosis or nominally in charge. The real problem is the psychobehavioural / rehabilitationist model of care. If you demand "physician-led services" without fundamental changes to that then what will happen is the existing psychobehavioural clinics will find a token physician to head them on paper; it will make no difference to the care that patients actually receive.
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I want to know why they are funding it and how come their comms officer is a part of the research team.
 
There's a post on FB today saying they are closing the latest questionnaire earlier than planned because they've had so many responses - about 900. They're leaving a week for those who have started filling it in to complete it.

I think it's incredibly difficult to get through to the MEA the problems with the whole premise as well as the details of this project when they have such enthusiastic responses from their members. The reality is that many pwME don't see the project beyond the fact that they are being asked, perhaps for the first time ever, to fill in details of their symptoms and experiences with ME/CFS. That can feel very validating. Unless you have knowledge of how badly this data collection can be misused to prop up useless and harmful clinics, many will understandably think it's a great project.
 
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