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

I hope someone can publicly ask an MEA representative why they are assisting a 'solution' for ME/CFS and Long Covid that categorises these conditions alongside 'Mental Health'* requiring a 'therapy-led'** approach.

* as described by the app developers
** according to the MEA's Facebook post about the app.

Of course we can speculate about why, but it would be interesting for them to have to come out and publicly say it.
 
MrMagoo said:
I wonder what it costs?
And how the cost compares to Visible*

*I know not everyone is a fan of Visible but at least it’s based on some science and uses FUNCAP. It’s not likely to cause damage, or harm. If the NHS said they were offering one or the other, and neither isn’t an option, Visible is better than Elaros or Nothing. They sell visible about £60 for a heart rate band and £15 per month, so £240 fora year, retail.
Click to expand...
Based on serverely affected Service Users request and personal experiences a limited number of licences was costed, allowance made and Visible incorporated into our service model.
 
I'm attempting to explore the app in more detail and will make some notes here. Since the app is on my phone and I'm typing this on my laptop I can't copy slabs of text, so this will be sketchy. Wish me luck. I hate feeling I have to do this, but someone's got to tell them about the problems with it.

The home page has a series of sections to select:

My tasks, add task.

Help at Work

Symptom specific resources

Financial resources

Advice for managers or employers

Videos

Advice for friends, family or carers

Condition overview

Provide your feedback

Day streak

Feedback form

Youir trends

Community
____________________

Taking these one by one:

My tasks: I tried adding steps and resting heart rate as tasks and selected daily. This created 2 more items to the list on the home page, but when I tapped on them nothing happened.
____________

Help at work:
Has a series of articles copied from or provided by other sources. Apart from one provided by an FM association, they seem to be all generic guides for anyone needing workplace adjustments, home working, short and long term absences, redundancy rights.
And there's one called IGLOo guide for employees which is specifically for people returning to work after a period of absence with a mental ill health, with lots about depression, anxiety, stress. And a list of further resources on mental health and work. So totally inappropriate for an LC, FM and ME/CFS guide.
___________________

Financial Resources
Financial wellbeing advice is focused on a link between financial difficulty and mental ill health. And stuff about stigma and the need to get financial advice. Nothing conditions specific in that section.
Lots of stuff copied from other bodies about sickness pay, redundancies etc not condition specific. Includes the access to work scheme, PIP and other benefits.
An MEA booklet on their disablity rating scale and the suggestion it can be used to inform medical and benefit discussions and to monitor progress.
An MEA guide to PIP and ESA and UC applications.
_____________________

Advice for Managers or employers
Igloo guide for line managers or employers and Occupational health at work don't see to have any resources yet

Employers guide - Working with fibromyalgia is provided by the FM association. I haven't read it.

Disablity discriminatlon in the workplace: Generic documents about employers' obligations, and about direct and indirect discrimination, harassment etc.

Healthy home working, an overview for managers:
about the health and safety act, and about the challenges for managers of people working from home. Things to consider includes stuff about ergonomics of home office and advice for the person working from home to take 5 to 10 minute breaks every hour and 'mobilise about the home' Section on resilience includes encourage employees to keep to a schedule and more frequent contact with them. So while there is mention of reasonable adjustments and OH referral, the focus is on keeping them working efficiently and resiliently. Some links given to various sources including one called Cordell health that focuses on getting disabled people able to continue working.
_____________________

Continued in a new post a couple of posts on from this one...
 
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Thanks Trish.
I’ve looked at IGLOO and it’s just an initiative about return to work, what the Individual, their colleagues Group, their manager Leader and the Organisation should all be doing.

Like many of these, good luck to any Individual assuming their G, L and O will be at all interested in helping.

So far the app sounds full of absolute generic rubbish which exists mid way through a Google search. Who needs to be reading about indirect discrimination unless you think you’re being discriminated against.
We can all find ACAS, we don’t need to gen up on the law and stride back to the office thrusting it triumphantly under everyone’s nose. Financial advice? Start saving, there’s very little assistance.

Looking forward to when you find the part on pacing….not.
 
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Trish said:
I'm typing this on my laptop I can't copy slabs of text
Click to expand...

Thanks for looking into this Trish

You can take screenshots (and rolling screenshot for long pages) of apps on your phone and use Google lens in Google photos to copy text to paste to another document or a post here.

I also use voice typing on my phone and laptop.

Hope this helps
 
Continuing my notes on the app:

The home page has a series of sections to select, I've crossed out the ones convered in my previous post:

My tasks, add task.

Help at Work

Symptom specific resources

Financial resources

Advice for managers or employers

Videos

Advice for friends, family or carers

Condition overview

Provide your feedback

Day streak

Feedback form

Youir trends

Community
__________________

Symptom specific resources

Topics covered:

Anxiety
Breathlessness and cough
Cognition
Communication
Emotional impact of Long Covid
Fatigue
Nutrition and hydration
Pain management
Physical activity and exercise
Sleep
Mindfulness
Stress
Social life and hobbies
Voice advice
Information for people affected by Fibromyalgia
Dysautonomia - A Guided for ME/CFS
Post-exertoinal Malaise
Post-Viral Fatigue - A Guide to Management
Cold hands and feet
Headaches and migraines
Orthostatic intolerance
POTS
Sensitivities, intolerances and hypersensitivities
Stomach and IBS
ME/CFS - A Guide to Symptom Management
_________________

I'll just look at a few of the above:

Anxiety - quite a lot about what it is and why pwLC may experience it, and details of aspects like cognitive distortions and a guide to techniques for treating it including CBT. counselling, grounding techniques, and what they are. Plus links to apps, more info and support groups.

Cognition Describes brain fog, lists some problems people with LC have and impact on life, relatonships and work. Says there's no evidence it's permanent.
Says best for management and rehab to start early:
"Post-Covid related brain fog symptoms should improve with:
Time
Rehabilitation
Management advice and strategies
Adoption of healthy lifestyle habits
Return to normal lifestyle and routine."

List of cognitive processes that can be affected by brain fog including attention, memory, perception, insight, orientation, language, processing speed, reasoning, executive function and metacognition, with brief explanation of each. Says a problem with one or more can cause difficulty.

List of possible causes of brain fog says not established but could include PVFS, lingering virus, encephalitis, hypoxia microvascular damage, breathing and heart probs, MCAS... Tnen details each of these and other possible causes that may need medical investigation. Secondary contributors listed including fatigue, poor diet, meds, sleep issues, pain, stress, anxiety, low mood, social isolation, mental over exertion, physical underexertion.

A bit about possible investigations of brain fog.
Treatment:
fatigue management, cognitive rehab, use of compensatory aids or strategies, adopting healthy lifestyle habits of body and mind.

Lots of advice about pacing, going slowly, lifestyle, reduce sensory stimuli, maintain social contact,
Description of cog, rehab - focus on training to negotiate daily life.
Exercising the brain, remedial strategies, include adding variety, mentally stimulating games etc Recommends a list of brain training apps,
Sleep hygiene,
physical exercise - recommends aiming for up to 30 minutes mild to moderate exercise a day, says more might cause PEM.
Lots more on techniques for aiding aspects of cognitive activity.

Lists and links sources - WHO, booklets by 3 NHS LC clinics.
________-

Communication
Very short, plus a reference

Emotional impact of LC
What you might experience, and what can help - relaxation, grounding technique, list of other useful techniques including meditation, yoga, mindfulness, music.
Thinking patterns and symptoms - a section about worry about and paying attention to symptoms can make them worse/
"For example if you focus on headaches, you will likely get more headaches, ... poor sleep, ...concentration... " Cycle of worry and symptoms affecting each other, ... be kind to yourself...
Source Leeds NHS LC rehab booklet.

More to come
 
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JellyBabyKid said:
How did they arrive at this magic figure? If I attempted to do 30 mins exercise it would probably finish me off!

Does this happen with everything medical now; seems harmless <<shrug>> Best guess is not evidence
Click to expand...

I thought the general exercise advice was 30 mins 5 times a week. Not every day.

It feels to me like what has happened with newspapers.

There’s very little investigative journalism in them, and people assume that if something is in a newspaper there has been some journalistic rigour, and that there are some laws and rules about being factually correct.

In fact, a large amount of coverage in a paper is “op/ed” or columnist, literally the “opinion” of the writer, which allows them to be correct as it’s an opinion, it doesn’t require checking for facts.
And printed facts can frequently be wrong, at best you might get a later correction if it’s raised and deemed to be necessary but often they just are left.

This approach of constantly tweaking and recycling lame advice on well-being feels similar.
It’s like “drink 8 glasses of water per day”
Why 8?
What size are the glasses? Pints? tumblers?
What size am I? 50kg? 200kg?
 
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JellyBabyKid said:
How did they arrive at this magic figure? If I attempted to do 30 mins exercise it would probably finish me off!

Does this happen with everything medical now; seems harmless <<shrug>> Best guess is not evidence
Click to expand...
Sounds like what they recommend to healthy people , 30mins a day, with a pretty half hearted caveat as if it covers their wilful ignorance legally should harm result from their recommendation
 
MrMagoo said:
I thought the general exercise advice was 30 mins 5 times a week. Not every day.
Click to expand...
Judging from the many, many (way too many) headlines and studies I have seen in recent years, most general advice is entirely speculative opinion.

I've seen it all: a little bit every day, intense once a week, or maybe on the week-end, lift weights, no, cardio, no, fun things, wait, actually mix things, no, you must be disciplined and find the one thing you can endure, or, maybe as little as 15 minutes, actually, just a moderate walk is fine, wait, actually make that walk a little faster and you'll get all the benefits of... whatever.

Some recent meta analyses of systematic reviews I have seen mostly amount to basically no good advice for this beyond: move, a little, a little more is probably good, more than that probably doesn't matter much unless you have a specific fitness goal, enjoy it, don't sit too long at once. The rest is just fake optimization, cooked up by people wanting to sell things, or hoping that their special little advice may get its 15 minutes of shame.

There really doesn't seem to be any actual reliable advice on this. All the previous such advices were pulled straight out someone's ass for the most part, based on their personal biases, agendas and/or bank accounts.
 
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