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

MrMagoo said:
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.
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In a package in which no one should trust that the information will not be misused.

It will be misused, guaranteed. In secret, behind closed doors.
 
That's a very odd rebuttal by the MEA. It starts out well, but seems to give far more space to the claims of of BPS proponents than to the MEA's views e.g. this is part of a very long excerpt written by the problematic service developer that takes up most of the article.

However, the ASA ruling led NHS commissioners to demand substantial changes to the programme (e.g., removing references to “recovery”) that its developers considered too undermining of the programme (as well as costly and onerous to implement). At the time of writing, the developers have withdrawn the programme for NHS patients.

The ASA's determination (that there was not enough trial evidence to support claims about recovery) is hooked into a dominant biomedical infrastructure, in which clinical trial evidence is the gold standard. Within these governing systems, biopsychosocial (and often locally-developed) services find it difficult to demonstrate benefit (i.e., that healing work works).

As one service developer commented, clinical trials are often not the best tool to demonstrate the usefulness of complex interventions, and therefore there is little such gold standard literature available to justify their programme:

Any evidence that we send in [responses to the ASA] is not accepted because the evidence that they measure it against is the existing literature. [But] the existing literature, everything that has been published on research for chronic fatigue and ME and fibromyalgia, is based on the biomedical acute disease model. [Service developer, Chrysalis Effect]
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I was left totally unsure what message the MEA was trying to get across, and I think many who are less familiar with BPS politics will hear a message that is completely different to what Charles thought he was saying. They seem to have given their opposition oxygen.

I may well have misunderstood something, but I'm sure that I won't be alone. What on earth is going on at the MEA?
 
Hutan said:
That's a very odd rebuttal by the MEA. It starts out well, but seems to give far more space to the claims of of BPS proponents than to the MEA's views e.g. this is part of a very long excerpt written by the problematic service developer that takes up most of the article.



I was left totally unsure what message the MEA was trying to get across, and I think many who are less familiar with BPS politics will hear a message that is completely different to what Charles thought he was saying. They seem to have given their opposition oxygen.

I may well have misunderstood something, but I'm sure that I won't be alone. What on earth is going on at the MEA?
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Weird wasn’t it? I was too tired to write properly. But also this rebuke needs comparing to what is being produced with Elaros IMO (I’d offer but I’m too tired. Perhaps if insomnia descends later)
 
Hutan said:
That's a very odd rebuttal by the MEA. It starts out well, but seems to give far more space to the claims of of BPS proponents than to the MEA's views e.g. this is part of a very long excerpt written by the problematic service developer that takes up most of the article.



I was left totally unsure what message the MEA was trying to get across, and I think many who are less familiar with BPS politics will hear a message that is completely different to what Charles thought he was saying. They seem to have given their opposition oxygen.

I may well have misunderstood something, but I'm sure that I won't be alone. What on earth is going on at the MEA?
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Worse than odd. This is extremely bad and confused. It's not clear who wrote this. Dr Shepherd is shown in a card at the bottom of the page, but I doubt he did. And I'm not sure who wrote this part, an extract from another text:
The ASA's determination (that there was not enough trial evidence to support claims about recovery) is hooked into a dominant biomedical infrastructure, in which clinical trial evidence is the gold standard. Within these governing systems, biopsychosocial (and often locally-developed) services find it difficult to demonstrate benefit (i.e., that healing work works).
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It's just absurdly wrong. This has nothing to do with a "dominant biomedical infrastructure", while literally all psychobehavioral evidence comes from extremely low quality and highly biased clinical trials. And they can't demonstrate benefit because they have no benefit, obviously. Also obviously, "healing work" does not work. This is nonsense.

Plus, in biomedicine, clinical trials are the tail-end of where most of the work happens: in a lab, doing biomedical research. And those trials are very different from psychobehavioral trials, in terms of quality and bias.

It's not even a rebuttal. They've lost it. Either in substance, or someone just poorly put together some texts that seem relevant in the context, but mix up different arguments.
 
Hutan said:
That's a very odd rebuttal by the MEA. It starts out well, but seems to give far more space to the claims of of BPS proponents than to the MEA's views e.g. this is part of a very long excerpt written by the problematic service developer that takes up most of the article.



I was left totally unsure what message the MEA was trying to get across, and I think many who are less familiar with BPS politics will hear a message that is completely different to what Charles thought he was saying. They seem to have given their opposition oxygen.

I may well have misunderstood something, but I'm sure that I won't be alone. What on earth is going on at the MEA?
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Do we know who compiled these overall? I know Charles often does the responses/sound bite part but in formatting the full bit and including these sections is there involvement of any others?
 
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