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This is exactly it, “pacing up” is a Trojan horse, of the CBT which existed alongside GET. It’s insidious because there’s no alternative - are you going to avoid treatments and live in bed forever, or do you want to get better? Because all you have in that moment is those two choices. And...

It’s ok, they don’t treat people who are severe, they don’t get any help

The initial messaging about the PROMS project was off, it had the feel of “something go in on behind the scenes” well now we know lots has been going on behind the scenes.

I love how lots of apps are being marketed as “tailored to you” and “access to knowledge/support” etc as ifthe internet didn’t already exist and I couldn’t just search for “local support” or “free mindfulness videos” myself. Urgh I can just feel the sales deck talking about “added value” I am...

So this is not NICE compliant

Someone should FOI the source figures for the claims!

Yes, doesn’t NICE also say not to offer generalised programmes/should b specific to ME/CFS?

It’s the whole normalisation of pacing up. That you should be able to do so, when actually you’re probably overdoing it. Whilst it’s there on the table, tantalising you that it’s a reasonable expectation, it’s an endorsement. That’s why it’s such an issue.

But but but there’s an app!

I believe the term is “destroying his own legacy”

So you can read what they created on the Proms thread, it’s a lot of questions. Over 90, some of the 5 questionnaires. The Healthcare person asks the patient to fill it out, this helps the Healthcare worker understand the issues and where they can help (!) because they will probably be an...

If he’s Greek it’s allowed.

PROMS are outcomes, I think that’s what is confusing. How can outcomes be a toolkit? It’s putting the cart before the horse, is the English expression. They wanted to measure outcomes so they designed a load of questionnaires to be used as a “toolkit” for healthcare providers, which, when used...

So in order to generate patient-reported Outcome Measures, you need a service, a clinic or what have you, to treat the ill people. Then you ask those people after treatment, about the outcomes. To make sure your outcomes are uniform, you develop a toolkit, a standards of treatments, whatever...

From their Feb 2025 event https://c19-yrs.com/elaros-hosts-webinar-on-digitally-supporting-me-cfs-and-long-covid-services/

I can’t do the quote thing. Tyson and Gladwell’s PROMS is now being called the MEA’s clinical toolkit which will be accessible through Elaros’ new OH app as per link/screenshot the OH app beta-testing has its own thread link on last page

The conversation is happening across two threads as well, it’s getting confusing because it’s relevant to the ME Association, PROMS, etc

I suspect that there are worse snake oil sellers on Insta and TikTok making much more outlandish and unfounded claims. I notice a reference to helping “some” people on his little slide, that “some” is doing heavy lifting.

They are starting to become the tent, that’s the concern

We suspect it’s nefarious. I think the facts are more like the DWP put some funding towards an NHS digital initiative which has come up with the app which is also relying on Tyson & Gladwell’s PROMs and the NHS will be maybe using the app when it launches. The concern is what the NHS might do...