United Kingdom: ME Association news

Binkie4 said:
The MEA is still using software that pronounces ME /CFS as Me/CFS on audioclips as above.
I did email them at the end of April to draw this to their attention but no response and new audioclips are still being produced about Me/ CFS as above. Good effort to provide information in audio format but the pronunciation makes nonsense of the content. If I eventually have any spare energy, I will ring.
Please join in if it bothers you. The more the merrier.
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It sounds like an off the shelf text to speech product. There might be very limited customisability for the users in terms of specific pronunciations.
 
Utsikt said:
It sounds like an off the shelf text to speech product. There might be very limited customisability for the users in terms of specific pronunciations.
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I believe there are others available. When this was discussed earlier, I think an Australian product was recommended as being more suitable. ( earlier in this thread )

edit: posts 343-345 this thread
 
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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 At the time of writing, the developers have withdrawn the programme for NHS patients.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?
 
rvallee said:
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:

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.
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It’s like chatGPT, except that makes more sense.
Maybe it was written “by committee” it’s just very unclear. Worst group project ever!
Although compare it with the responses about Elaros, the app they are somewhat involved in. Or aren't, I can’t really tell.
 
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It's been a common failing of the MEA lately - bad work that has not been caught by any sort of quality control process ends up undermining the things that Charles and the MEA have been fighting for, for so long.

I really don't believe that that is an article that Charles would have wanted to put his name too. I can't work out if it's incompetence or if the MEA has been infiltrated by BPS supporters. It's quite unsettling. I hope someone who knows Charles can ask him what is going on and how that article came to be published.
 
That MEA article has nothing to do with apps or Elaros or this [the Elaros] thread. It's a direct response to the claims made about the MEA in the recent, dreadful, "chronicity rhetoric" paper. The extracts are direct quotes from that paper - CS is just illustrating what he's responding to.

Note from the moderators: we have moved the discussion to the News thread.
 
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Nightsong said:
That MEA article has nothing to do with apps or Elaros or this thread. It's a direct response to the claims made about the MEA in the recent, dreadful, "chronicity rhetoric" paper. The extracts are direct quotes from that paper - CS is just illustrating what he's responding to.
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Ok well it is relevant because they are quite forthright about this app, and not about the Elaros one. Also they talk about what they fund, making zero reference to the PROMs they funded.

It’s also badly written and badly set out making it hard to follow.
 
Nightsong said:
That MEA article has nothing to do with apps or Elaros or this thread. It's a direct response to the claims made about the MEA in the recent, dreadful, "chronicity rhetoric" paper. The extracts are direct quotes from that paper - CS is just illustrating what he's responding to.
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Yes, about it not being to do with Elaros. The issue I have with it is that there are 4 paragraphs from Charles and 9 paragraphs from Chrysalis. The bad messages completely swamp the sensible stuff, and it's not completely clear who is saying what. It's like Charles wrote a little bit of good content and said to someone, illustrate it with a quote from Chrysalis to explain what we are complaining about, and the person chose a lot of the most persuasive sounding content from Chrysalis. There's not enough explanation as to why what Chrysalis is saying is wrong.
 
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