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

Kitty said:
It would be interesting to know if they're trialling it for people with kidney disease or Addison's or lupus, or whether it's only for Not Trying Hard Enough conditions.
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Kitty said:
I'd be interested to know if there is another medical condition that would be managed like this. Never mind whether it's useful or not—would a doctor working in any specialism suggest patients record detailed diaries, goals, plans and baselines?
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From @Eleanor's post up thread:
Furthermore, in 2025, ELAROS will launch a consumer-facing occupational health app, Open-OH, aimed at supporting many of the 2.8 million people out of work due to long-term sickness relating to Long Covid, ME/CFS, Fibromyalgia, and Mental Health.
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So, it looks as if it's not just ME/CFS - it's "people out of work due to long term sickness relating to Long Covid, Fibromyalgia and Mental Health", who need the diaries, goals, plans and baselines.

The MEA is really having its PACE Trial moment, isn't it.
 
There are sections for clinicians and employers and stuff about finances that I haven't explored yet. I've run out of steam and need a palate cleanse from all that BACME stuff. Back to watching police dramas on TV. It feels safer - at least there the problems get solved and the good guys eventually win.
 
Jonathan Edwards said:
I would imagine, although I may be wrong, that people will find the app completely useless, since the best it can do is put people in touch with services that do not function and otherwise provide an echo chamber for people who no longer need it (like recovery Norge).

Fortunately, we have progress being made in a very different direction by AfME along with the Edinburgh team and others.
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The issue is that many patients are not well informed and while pacing up isn't as destructive as full GET it can still cause harm and deterioration. I have seen people harmed by these kinds of programs in LC groups.

Of course the progress is welcome and cannot come soon enough but as you yourself have said it is not certain when the research progress will make clinicians take ME seriously. It may not be until we have effective treatments. So in that scenario we are looking at years more where people put their trust in clinicians and are pointed towards this app and deteriorate as a result.
 
Trish said:
It seems like there has been a takeover of the MEA by supporters of the BACME, rehabilitation, pacing-up approach, led by Sarah Tyson and Pete Gladwell as the 'professionals' and probably instigated by an unholy alliance of the former MEA leader Neil Riley, who left following protests in December and Russell Fleming who has worked his way up in the MEA from part time media person to key project manager and has his fingers in every pie, including representing the MEA on the government consultation and running the pilot local provision schemes.

I get the impression Charles Shepherd has been sidelined and has no say on the direction they are taking the MEA.
It's all deeply disturbing and making me feel despair.

I don't get the impression Riley, Fleming, Tyson or Gladwell have any idea what very severe ME is and how harmful the whole rehab, pacing up, baselines and goal setting approach is, nor how scientifically ignorant BACME's so called science is. I had some correspondence with Pete Gladwell following our criticism of his 'care plan' document briefly promoted by AfME. He was very polite, but didn't accept a single point I made. He is completely wedded to the rehab, baselines, pacing up approach and insists, wrongly, that it's NICE compliant.

It particularly disturbs me that Tyson, Fleming and Riley are all pwME who either have never experienced severe ME or have improved significantly and attribute that improvement to their own efforts, determination etc., and assume the same applies to everyone, and the BACME people involved only see mild and moderate pwME and don't do follow up to see the harm their pacing up approach causes for some.

Edit, this post may not seem on topic. It's meant as a response to CS saying on FB that the MEA doesn't endorse the app, while at the same time the Tyson, Gladwell, Fleming clinical toolkit and PROMS project seems to be working hand in glove with the app people in the name of the MEA. It makes no sense.
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Thanks for putting this on the thread Trish. I very strongly suspected Riley and Russell Fleming involvement. The MEA always ran with the hare and hunted with the hounds to some extent - but this is full blown allying with regressive BPS agendas.

Unfortunately some/many MEA members and FB followers can be naive and not attuned to how charities can collaborate with deeply unhelpful/destructive projects. Some are too sick/unable to read enough to become astute and critical, or are just new patients, and are grateful and hopeful for anything the MEA does. The same is true of AFME also.

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Trish said:
The strategy for pacing is heavily dependent on detailed activity and symptom diaries, goals and plans, baselines, and once stable for a week, starting to increase activity by up to 20% a week. There is no warning of the risks of worsening by keeping on trying to push the envelope after every stable week. Rests are advised, but contradicted by insisting they must not last more than 30 minutes.
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This isn't NICE-compliant at all, is it? NICE guidelines say rest as required, no fixed incremental increases, only try increasing activity if and when you want to after a period of stability which could be weeks, months or more.
 
Trish said:
It seems like there has been a takeover of the MEA by supporters of the BACME, rehabilitation, pacing-up approach, led by Sarah Tyson and Pete Gladwell as the 'professionals' and probably instigated by an unholy alliance of the former MEA leader Neil Riley, who left following protests in December and Russell Fleming who has worked his way up in the MEA from part time media person to key project manager and has his fingers in every pie, including representing the MEA on the government consultation and running the pilot local provision schemes.

I get the impression Charles Shepherd has been sidelined and has no say on the direction they are taking the MEA.
It's all deeply disturbing and making me feel despair.

I don't get the impression Riley, Fleming, Tyson or Gladwell have any idea what very severe ME is and how harmful the whole rehab, pacing up, baselines and goal setting approach is, nor how scientifically ignorant BACME's so called science is. I had some correspondence with Pete Gladwell following our criticism of his 'care plan' document briefly promoted by AfME. He was very polite, but didn't accept a single point I made. He is completely wedded to the rehab, baselines, pacing up approach and insists, wrongly, that it's NICE compliant.

It particularly disturbs me that Tyson, Fleming and Riley are all pwME who either have never experienced severe ME or have improved significantly and attribute that improvement to their own efforts, determination etc., and assume the same applies to everyone, and the BACME people involved only see mild and moderate pwME and don't do follow up to see the harm their pacing up approach causes for some.

Edit, this post may not seem on topic. It's meant as a response to CS saying on FB that the MEA doesn't endorse the app, while at the same time the Tyson, Gladwell, Fleming clinical toolkit and PROMS project seems to be working hand in glove with the app people in the name of the MEA. It makes no sense.
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So glad you said this Trish....you have no idea how damaging MEA's involvement has been since July 2024.
 
Hutan said:
So, it looks as if it's not just ME/CFS - it's "people out of work due to long term sickness relating to Long Covid, Fibromyalgia and Mental Health", who need the diaries, goals, plans and baselines.
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So at least they're being honest that this is not treatment and it's not management. It's about work.

Well, as long as everyone knows.

They could decide to play along with the political game, or design an AI tool to fill it with content from the Isle of Wight ferry timetable and the Screwfix catalogue.

Or do something that constructively supports their health and wellbeing.
 
V.R.T. said:
The issue is that many patients are not well informed and while pacing up isn't as destructive as full GET it can still cause harm and deterioration. I have seen people harmed by these kinds of programs in LC groups.

Of course the progress is welcome and cannot come soon enough but as you yourself have said it is not certain when the research progress will make clinicians take ME seriously. It may not be until we have effective treatments. So in that scenario we are looking at years more where people put their trust in clinicians and are pointed towards this app and deteriorate as a result.
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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.
 
Anyone figure out what the OH means? The website says nothing about it.

Could be either Optimum Health (Clinic, but they don't appear involved), or more likely Occupational Health, which would fit with the overall ideology this is based on, but would make it necessary to not just avoid this, but to strongly advise against using it, because there is obviously nothing an app can do that decades of failure doing it face-to-face haven't already failed to achieve, so the intent and purpose of the app would then obviously be more on the nefarious side, which is actually more probably given the decades of failure and the obvious obsession with continuing to fail as long as they can get away with.

Definitely the MEA is just killing its own relevance here.
 
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