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.
_____________

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A badly outdated MEA 3 page article by Charles Shepherd dated February 2020, so pre NICE and pre Rituximab results, and still saying most doctors in the UK believe the BPS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.
_______


Explaining ME/CFS to other people, links another MEA booklet dated September 2024.
 
Last edited:
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 Basically I've said it's useless, clunky, too many outdated, contradictory, inaccurate, and overlapping resources copied from various sources, And I told them off for the pacing up advice, describing it as a version of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.
 
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...
As predicted, I forgot. Sorry. I'll have a look at it now.

It's a mix of bits taken from booklets they reference

NHS Leeds: Long COVID rehabilitation booklet Information for patients page 39

WHO Support for rehabilitation: self-management after COVID-19-related illness page 16

And a couple of other booklets from Hertfordshire and Cambridge NHS which I assume are similar.
 
Last edited:
Cinders66 said:
MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android
Click to expand...
I applied to attend this event and didn't get a response. It's intended for clinicians, so I expect that's why I wasn't invited.

The also offer recordings for those who can't attend, so I have emailed them to request recordings of this meeting and any earlier ones.

Here's a copy of my email:

re: the meeting on 2nd July titled Integrating ME/CFS and Long Covid Specialist Services, led by ELAROS and the ME Association, and the February meeting

Dear organisers,

I applied to attend the meeting on 2nd July, but have not received confirmation. In any case, a two hour online meeting is more than I can manage due to poor health, so I am requesting copies of the meeting and the earlier meeting in February.

I understand that the meeting is intended for clinicians, however, I think it is vital that well informed people with ME/CFS and Long Covid should be able to review the recordings and provide feedback. I am in the process of reviewing the beta version of the Open OH app and will be submitting my comments to the consultation.

I think I can also contribute usefully with feedback on the plans for adding more resources to the app developed by Professor Sarah Tyson's team, BACME, and others. I participated in the initial testing of the first iteration of Prof Tyson's questionnaires and have serious concerns about her work. The ME Association has, as far as I am aware, not opened up later stages in the development of her Clinical Tookit and PROMs to public consultation, so we are very much in the dark about what she is producing. Opening up the recordings of the meetings you have been holding to scrutiny by patients, as the likely recipients of clinical care based on these resources, just as you have made the beta version of the app open for feedback, should be an essential part of this process. I am sure you would rather be made aware of any problems with the approach taken by some of those involved as soon as possible in the process of development.

I look forward to your positive response. If you need to know more about me and my request, I will be happy to answer questions.

Thank you,

Trish Davis
Click to expand...
 
Trish said:
As predicted, I forgot. Sorry. I'll have a look at it now.

It's a mix of bits taken from booklets they reference

NHS Leeds: Long COVID rehabilitation booklet Information for patients page 39

WHO Support for rehabilitation: self-management after COVID-19-related illness page 16

And a couple of other booklets from Hertfordshire and Cambridge NHS which I assume are similar.
Click to expand...
Thanks Trish.

So they both reference “you may have been intubated in hospital” and that C19 can cause sore throat, laryngitis etc don't strain to talk and keep hydrated

In conclusion, nothing more exciting than “what to do if you lose your voice/have laryngitis” and there’s no advice on what to do if the problem doesn’t resolve. So myself who needed exercises from SALT and has been left with voice issues this would have been terrible advice to “self-manage”
 
To be fair the app does say if your voice doesn't return to normal seek referral to ENT, Ear, Nose and Throat and ENT Speech and Language Therapy. I hadn't noticed whether that was included in the references I linked.
 
Trish said:
To be fair the app does say if your voice doesn't return to normal seek referral to ENT, Ear, Nose and Throat and ENT Speech and Language Therapy. I hadn't noticed whether that was included in the references I linked.
Click to expand...
Ok.

The whole thing is just a big “go away” though, isn’t it.
Manage yourself. Don’t bother the medical staff with this.
 
You must log in or register to reply here.
Back
Top Bottom