The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

I'm losing the will to live on this app. There is so much there, bits of it OK, bits dreadful, some documents contradicting other documents. How is a new patient supposed to navigate their way through the blizzard?

I'll have one more go later today then try to summarise my key concerns from what I've seen.
 
I just took another item from the app at random.

It's in the section Condition Overview,

What is ME/CFS?

A not particularly good summary of some aspects of ME/CFS which is a copy of this article by ME Research UK What is ME?

At the end of the article the acknowlegement is the ME Association. I got a clue that it was an MERUK article, not an MEA article, from the bit that says 'none of us at MERUK are medical doctors', and proceeded to invite donations for research.

So a complete mix up. What a badly put together app. Some jobsworth has just cobbled together a random selection of documents from multiple organisations with overlaps and contradictions.
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And another bad choice:

Again in the section Condition overview

What do we know about the causes of ME/CFS
A badly outdated MEA 3 page article by Charles Shepherd dated February 2020, so pre NICE and pre Rituximab results, and still saying most doctors in the UK believe the BPS model where "persisting ill health is largely maintained by maladjusted behaviour and unhelpful illness beliefs", and some believe it's psychiatric, but CS and the MEA believe it is physical. There is a summary of some of the biomedical findings and hypotheses current back then, including brain, muscle and immune abnormalities.
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Explaining ME/CFS to other people, links another MEA booklet dated September 2024.
 
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MrMagoo said:
Sorry to bother you @Trish I’m particularly interested in the Voice stuff given my history, if you are taking requests.
Click to expand...
Will do. If it doesn't appear tomorrow, remind me.

I have just filled in the feedback form on the app. Basically I've said it's useless, clunky, too many outdated, contradictory, inaccurate, and overlapping resources copied from various sources, And I told them off for the pacing up advice, describing it as a version of GET and potentially equally harmful.
For new things to add I suggested FUNCAP, the S4ME factsheets, and the facillity to directly link wearable data.
I told them not to use Sarah Tyson's materials and to use FUNCAP instead, and to scrap the Chalder questionnaire.
I also told them they should make it easy for patients to opt out at any stage of their clinicians or researchers having access to their personal data.
 
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