BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

Her book Smile or Die is excellent.

 

You saw my links to her talk & a review of her book upthread right?

Ehrenreich's work was a revelation to me.

 

@Firestormer (Russell Fleming) was upon record as saying it doesn't matter if there's no test for ME because there's no treatment. The treatment is consideration, I've become 100% bed bound without it. Again I tried to warn you. Saying testing that can prove we're really seriously ill, doesn't matter, is not competent?

 

She was brilliant. A big loss.

 

I'm very lucky that mostly I don't have to think about that as much as I used to. I'm writing opinion/commentary from a public health perspective with an audience that knows what I'm talking about. I'm not really doing "journalism" much these days, in the sense that the BBC reporters are. I don't feel a need to give Phil Parker his say or include "positive" anecdotes. The BBC story was very negative on the LP. To me, it was a stronger story for having included the patient who felt improved. It suggested the journalists are trying to be honest brokers. I don't think including that undermined the overall negative assessment of the LP offered by the piece, given all the critical voices.

Maybe my appreciation for such journalistic efforts at "balance" is just the knee-jerk, residual journalist in me. I certainly understand that others might disagree with that assessment.

 

I didn't see your link.

It's a great book.

Susan Sontag Illness as metaphor / AIDS as metaphor is also a good read

 

I applaud your approach @JohnTheJack. Nice to see that some of the people who write articles that we consider as harmful are humans too, and open to feedback.

 

I think that was the program earlier this week.

 

Excellent. 'the article is structured so as to be weighted in favour of Parker'. Yes.

My great concerns were 1/ that Parker is such a slick operator, and ruthless salesman, that when he is interviewed/quoted in articles it can operate as basically a hard sell advertisement for LP, and unless the critiques of LP are spelled out and robust (which in that article they were not, the MEA response was awful) the article favors Parker whether the journalist intended that or not.

And 2/ that although the Glasgow Standard is not a national, other journalism students would read that article and could well feel encouraged to, now or later, join in the 'writing stories on mind body cures for ME' bandwaggon.

 

It was toward the forum in general not just you. Shepherd is soft upon BPS propaganda and Russell Fleming doesn't seem to understand why having a test to prove ME is real, matters.

 

And this is for the same reason why claims of drinking urine being good for this or that shouldn't be amplified. Or some potent drug. Or thoughts and prayers, spiritual awakenings, psychic séances and anything and everything else.

One of the most frustrating things so far from LC has been how obvious it is that remissions, often temporary, and recoveries are random and spontaneous. Most comments on the LC sub-reddit attribute it to time. A common type of post is to list all the things they did, but most don't attribute improvement on any particular thing, they think time made the difference, meaning a natural biological process. This should have ended everything about any treatment boasting of recoveries.

But instead this has been used as a justification to do nothing, as if millions being ill for months or years is not a problem worth solving. But for sure claims of remissions or recoveries aren't worth a damn on their own, whether it's magical mind-over-matter, exercise or anything else.

Clinical trials being largely useless here, what we need to rely on is data. All trials boasting of recoveries from treatments have far lower odds of recovery than what is found naturally. The data tell us that this needs to be ignored, it's just noise. And even more so with the whole "brain retraining" where they tell people to think and say they're recovered, even by the usual standards it's especially worthless, even suspicious.