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My comment was in relation to discussing this matter with the MEA. They weren’t responsive regarding Trish’s letter about PROMS, I doubt Russell Fleming will reply to the @ here, better to leave them to it and speak to other organisations about this app.

We are now in a post-truth society, where NICE 206 guidelines 2021 have been issued - but largely ignored by the NHS and an Emeritus Professor of Epidemiology is campaigning against against all edged harm they’re causing. Honestly, it makes me feel like the neglected child ignored by the...

I disagree. We should forward groups like ME Action, There for ME, 25% et so they can be forewarned and have the heads up before they and their members have this sprung on them. The ME Association is a lost cause making themselves increasingly irrelevant.

They will sell it as “delivering more, with less” it will free up OTs to do proper work with people in clinics, whilst just replying to the odd question/pulling some stats off the app. I was told my local service receives funding for10% of the patients they see, hence all the online group...

I think we need to talk with people in relevant groups, some are on here aren’t they?

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/