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

[Trish]

particularly in light of the delivery plan being even more of a disaster than we could have anticipated

Is it? We haven't seen it yet. But yes, I fully expect it to be a disaster.

 

[Trish]

It is extremely hard to deal with, so appreciate you using your spoons to keep on this so very eloquently.

Thanks, spoons going rusty, shrinking and rapidly running out.

 

[JellyBabyKid]

Thanks, spoons going rusty, shrinking and rapidly running out.

hugs of support and solidarity @Trish

I think we are all running out of beans for this never ending, multiple fronted battle

 

[JellyBabyKid]

Is it? We haven't seen it yet. But yes, I fully expect it to be a disaster.

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

 

[Hutan]

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]

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)

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]

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.

What makes you think that's changed?

 

[Trish]

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A badly outdated MEA 3 page article by Charles Shepherd dated February 2020, so pre NICE and pre Rituximab results, and still saying most doctors in the UK believe the BPS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

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.

 

[John_Lobb]

Call for oversight and scrutiny re Open-OH 08-06-25

 

[JellyBabyKid]

Call for oversight and scrutiny re Open-OH 08-06-25

 

[JellyBabyKid]

"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

 

[Trish]

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.