Is it? We haven't seen it yet. But yes, I fully expect it to be a disaster.
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app
Thanks, spoons going rusty, shrinking and rapidly running out.
JellyBabyKid
Senior Member (Voting Rights)
hugs of support and solidarity @TrishI think we are all running out of beans for this never ending, multiple fronted battle
JellyBabyKid
Senior Member (Voting Rights)
I haven't seen it, but it has taken 3 years, had 3 delays, has no planned publication date, no firm commitments and no funding
We've seen a number of times that when things are delayed, it has been due to the BPS people trying desperately to pull strings behind the scenes.. (e.g. NICE Guideline, Cochrane new review of exercise treatments, probably the MAGENTA trial)
JellyBabyKid
Senior Member (Voting Rights)
That's my fear.
A damp squib at best. possibly not even any better or further forward than the CMO report in 2002. I am starting to seriously despair.
DigitalDrifter
Senior Member (Voting Rights)
What makes you think that's changed?
I don't. I was trying to make a different point. That the MEA should make it clear that it's not just about who believes what, it's about evidence. And that there is good evidence that ME/CFS is not psychobehavioural or psychiatric.
JellyBabyKid
Senior Member (Voting Rights)
JellyBabyKid
Senior Member (Voting Rights)
"Please be assured that our advisors have decades of experience supporting patients with a range of needs and severity, shaping clinical best practice, and delivering world- class research that has had a huge impact in their respective areas"
Yes, but mostly not in ways the patients have benefitted from
Yes, but mostly not in ways the patients have benefitted from
Thanks, @John_Lobb, that's a really good document.
I'm glad there are people fighting to get this dreadful app changed. It's so awful to see app developers who haven't a clue about the quality of research or treatment inflicted on pwME being put in charge and paid by the UK government to run this app project. I suspect they have no idea of the harm they are causing.
I'm glad there are people fighting to get this dreadful app changed. It's so awful to see app developers who haven't a clue about the quality of research or treatment inflicted on pwME being put in charge and paid by the UK government to run this app project. I suspect they have no idea of the harm they are causing.
do you have a source for this?
It seems pretty good, but the issue as always is how we can get it to enough pwme and have a simple way of them doing something that is small risk and accessible for them. On top of that they need to know who it is from.
I don't want to put more detail here because it is an open thread and don't want to feed those who are behind this detail or hints that they might use etc.
Downloaded the app today. Money for research takes time and effort ... it's complicated and unglamorous; but hang on, lashing together a shiny APP with useless/harmful regurgitated content, with lots of useless VIDEOs ... that would PROVE we're DELIVERING.
How can I best tell MEA how misguided this effort is?
How can I best tell MEA how misguided this effort is?
A letter to Charles Shepherd at the MEA submitted on the MEA contact form. He has asked on Facebook for feedback on it.
I was looking at it again today to see whether I could face trying to put together a coherent critique and decided not to bother, unless it has new materials added.
As far as I can see the ME/CFS section of this Open-OH app is just a dumping ground for a random selection of articles and leaflets from the MEA, MERUK and BACME, plus the Chalder Fatigue questionnaire (CFQ), and oddly, a link to a long and detailed critique of the CFQ on MEPedia.
The meetings between Sarah Tyson and Russell Fleming with ELAROS are presumably in preparation for the so far secret clinical toolkit and PROMs project materials to go on this app and on a separate one for use by NHS ME/CFS clinics.
Have you tried the part where you are supposed to be able to put personal symptoms and CFQ scores? I couldn't work it out.
I had to delete the app - was making my blood boil that money can be found for frippery like this. There isn't any help for pwME, except the hope that scientists will be allowed to discover what's really going on; pwME know this; scientists know this. So how do human affairs end up being led by donkeys?
Deleting seems the sensible option.
What bothers me is there could be a much better app that pwME could link to any wearable they have to track steps, heart rate etc, with easy to record symptoms, severity level and FUNCAP data, and meds to track their own data as theý choose to, to help with pacing, and for use as outcome measures in treatment trials.
What it shouldn't be is pages copied from assorted stuff that's readily available online and much of which is wrong or useless.
And what it absolutely shouldn't have is any connection to the DWP .
What bothers me is there could be a much better app that pwME could link to any wearable they have to track steps, heart rate etc, with easy to record symptoms, severity level and FUNCAP data, and meds to track their own data as theý choose to, to help with pacing, and for use as outcome measures in treatment trials.
What it shouldn't be is pages copied from assorted stuff that's readily available online and much of which is wrong or useless.
And what it absolutely shouldn't have is any connection to the DWP .
I just sent this:
Dear MEA
My wife received her ME diagnosis 25 years ago. It has been a long uphill (downhill, actually) struggle. We know several other ME pilgrims. Because it is chronic, ME sufferers have had time to sort out fact from fiction:
... there is no treatment; actually strike that: there have been treatments, like graded-exercise, like medical shrugs - all damaging
... no serious research money is being applied
... in fact ME sufferers are left with the distinct feeling no-one really cares
However, your shiny app advertises all manner of help. But, truth be told, there isn't any help, no matter how many videos you string together, no matter how many apps you build so that people can just click their way to ... well, so long as they keep clicking there is the mirage of purpose, deflecting from meaningfulness. Better for pwME and better for truthfulness is to say "the only help will come from science, which is why we are spending ALL our money on that; spending money elsewhere just delays getting the science we need"
That way you stand a chance to, as your website says "bring hope to people with ME/CFS & Long COVID".
Your Mission Statement says "Our main priorities are to provide support, reliable information, a voice and representation, and funding for vital medical research." and I say you have those the wrong way around - take it from our 25+ years of suffering: medical research is the ONLY source of support - for pwME to know that research is a relentless focus would turn despair into hope - at least if not in our time then for the countless others struggling along behind.
Yours sinceely
Arthur Noble
Oxford
rvallee
Senior Member (Voting Rights)
The sad truth is at all human affairs are. Everyone is out of their depth and winging it all the time.
Some pretend otherwise and cause disaster. Others know it and are more careful about it. You can guess which type has more sway.
MrMagoo
Senior Member (Voting Rights)
Visible Free Version for example, along with Apple health for heart, steps, or a free app like bearable for symptoms etc and wearable = pre-set reports.
This stuff is already out there and in use. As is the hodgepodge lodge of leaflets they’ve gleaned from the top Google results for “fatigue advice”
They have taken the wheel, and re-invented it as something a bit less smooth.