Preprint Development and psychometric evaluation of The Index of Myalgic Encephalomyelitis Symptoms TIMES Part I…, 2026, Horton, Tyson, Fleming, Gladwell

[Peter T]

If MEA staff are participating in this research, the write up and the ongoing promotion of this approach to service commissioners as part of their paid work, it means the association is not just contributing through research grants but also resources from their general budget.

Obviously it is part of the MEA’s role to promote good practice, but it is not clear what percentage of people with ME/CFS would regard this as good practice, and not is it clear that the association is being up front about this with their membership. Are the association being this directly involved with the biomedical research they are funding?

 

[Tal_lula]

last time i encountered a series of "objective measures" in rehab for non-ME health issues (also of unknown mechanism) it was a way for them to ignore me coming in saying I'd been feeling worse over the last week and instead point out the 1 or 2 responses where I gave a better subjective rating than last time so that I could keep coming and paying them

Do these sorts of instruments cope with the fact that a sick person being similarly sick over a long period may score a given day's symptoms as being less bad than they previously have, because they're more used to a worse baseline? I ask this because it has been my experience both times I have had chronic issues that affected my quality of life.

edit:

this

This tangentially reminds me of when I was a few months into Long Covid and having maybe the 4th or 5th appointment with my GP (the first face to face), who said very dismissively "Well, your condition's stable because you're just complaining about the same symptoms" (which she listed) - but that was because those were my worst & most concerning symptoms which still hadn't been appropriately investigated let alone treated, which was what I wanted to focus on before tackling other symptoms.
It wasn't even true because at that very appointment I tried to bring up my tachycardia but she just told me not to watch "exciting TV" without even looking at my heart rate data. Thanks to the ME clinic, I was diagnosed with PoTS shortly afterwards.

I think certain healthcare professionals focus on symptoms in this way because they don't believe there's any pathology.

 

[Trish]

The Tyson project was initially awarded £90,000 by the MEA. They were recently awarded another chunk of money to expand the project. I think it's another £50,000, to expand the Clinical Toolkit. I'm not sure whether that means more questionnaires, or associated materials and supporting implementation.
I would love to know who in the MEA approved all this.

 

[dratalanta]

I wonder how much his has all cost the MEA, has here been any info released?

You mean, other than costing them their reputation and the trust of patients? They - and we - will be paying for this debacle for years to come.

 

[Sean]

What a cluster fudge.

 

[MrMagoo]

So the MEA gave a grant to this project.
Did that grant pay Russell, the MEA employee, to work with the two NHS employees to create an assessment tool for the NHS to use?

Presumably it’s all good because Tyson and Fleming have ME and therefore represent all of us with the illness.

You couldn’t write it as part of a satire, it would be deemed “far fetched”.