Miranda Hart - British comedian

tornandfrayed said:
If I remember rightly, one of things Miranda Hart's messages was about giving other sufferers hope. It may sound thoughtful, but I don't think giving people unsubstantiated hope is appropriate. If she's getting better (and I hope that's true and wish her well) she's just been lucky (which she has said she recognises). Extrapolating from her experience to say others will recover isn't backed up by what we know about recovery rates. I think it's unhelpful and cruel.

For myself, I'm in a better place psychologically having given up hope. I used to feel the start of the recovery process must be just round the corner and it took me over twenty years to become reconciled to this being my life now and living day to day. If there's a breakthrough in medication or I just get lucky before I'm out the door that would be wonderful. But constantly reaching mentally for recovery is just disappointing and painful.
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False hope is the worst possible response. Tell patients the truth. Don't sugar coat it or lie about it, because the consequences for everybody, not just patients, when they find out the reality are far worse.

If you want patients to lose trust and faith in doctors then giving them false hope is a very good way to do it.
Wyva said:
Many people in the chronic illness community say they dislike the presumption that stress has caused their conditions, reporting that this stigma itself can cause stress.
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This. Telling patients the cause of their problems is stress or their failure to handle stress, when they have been given no means to remove the cause of that stress (e.g. a serious untreated medical problem), is about as irresponsible and cruel as it gets.
 
I’m pleased to share that the New Zealand Herald has just now published the Telegraph article on its website. Hopefully it will make any other local media outlets reconsider interviews that may have been planned. Not that I was aware of, but it would not surprise me if one was on the cards for Radio New Zealand.
 
Tale Nine

"We feel we want to conserve energy when fatigued, but actually the energy cells recover with movement, not without it. It can be very counter intuitive to go on a walk when you are lethargic, but if lethargy is often the repression of anger or grief rather than exhaustion, then movement mobilises, releases and therefore re-energises. "Miranda.

Oh how dangerous. Not just silly or mistaken but dangerous. "..if lethargy is often the repression of anger or grief......then movement reenergises". Don't the publishers have a responsibility of accuracy? Does she know anything about PEM? So Maeve just had to move to reenergise herself? Dangerous.
 
I didnt read all of it, but what i did was good. I'm not suggesting it shoudnt be sent, indeed it's necessary to have these things out there, but I hope no one expects her to respond other than in the way she already has.

Indeed the flak/'nay-saying', will only serve to 'prove' that our problem is with our own negative thinking.
 
Binkie4 said:
Tale Nine

"We feel we want to conserve energy when fatigued, but actually the energy cells recover with movement, not without it. It can be very counter intuitive to go on a walk when you are lethargic, but if lethargy is often the repression of anger or grief rather than exhaustion, then movement mobilises, releases and therefore re-energises. "Miranda.

Oh how dangerous. Not just silly or mistaken but dangerous. "..if lethargy is often the repression of anger or grief......then movement reenergises". Don't the publishers have a responsibility of accuracy? Does she know anything about PEM? So Maeve just had to move to reenergise herself? Dangerous.
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I didn’t realise how bad it is until I just read Long Covid Advocate. It’s bad bad bad. She’s practically gone Paul Garner, but with a book deal and nice manner.
 
Binkie4 said:
Tale Nine

"We feel we want to conserve energy when fatigued, but actually the energy cells recover with movement, not without it. It can be very counter intuitive to go on a walk when you are lethargic, but if lethargy is often the repression of anger or grief rather than exhaustion, then movement mobilises, releases and therefore re-energises. "Miranda.

Oh how dangerous. Not just silly or mistaken but dangerous. "..if lethargy is often the repression of anger or grief......then movement reenergises". Don't the publishers have a responsibility of accuracy? Does she know anything about PEM? So Maeve just had to move to reenergise herself? Dangerous.
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i agree.

I think Miranda is likely intending to refer to the mitochondria there, which AIUI do multiply with exercise. But hey if only it were that simple!
 
I’ve just skimmed the letter. The quotes from Miranda Hart are far worse than I anticipated. I’m really disappointed that The Times, which has been so supportive in recent years largely thanks to Sean O’Neill, put Hart’s book on its front page last week.

Really hard to know how to respond. As ever, it’s important to challenge the ideas not the person. I fear this book could be an absolute disaster for people with ME/CFS in terms of how we are treated by people we know.
 
Robert 1973 said:
Really hard to know how to respond. As ever, it’s important to challenge the ideas not the person. I fear this book could be an absolute disaster for people with ME/CFS in terms of how we are treated by people we know.
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I haven't read the book, just the quotes and some of the media accounts, but I think that if anyone were to raise it with me I would simply quote this example of her approach, which @Lou B Lou quoted from iNews :

iNews said:
'[...] she cites a Dr Masaru Emoto, who conducted an experiment in which he spoke to two bowls of rice, one of which received pleasant words, the other abuse. “The bowl spoken badly over started going mouldy in a way the other didn’t,” writes Hart. “I KNOW! Talk about the power of words.”
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And then I would point out what would go through one's mind about Dr Emoto's claim if one were to apply critical thinking.

I feel really badly for Miranda in all of this. Like all of us who are chronically ill, she's been forced to swim in a grifters' cesspit of misinformation, and without a scientific background it can be very hard to assess it.

I really hope that some of the genetic research that's going on will give us some decent pointers soon. Good science can't come soon enough.
 
Robert 1973 said:
Remarkable that the Daily Mail – one of worst newspapers in the world – is the voice of reason on this issue.

Agree with most of the comments here. Miranda appears to a kind and caring person but her message is neither helpful nor evidence-based.
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Considering that the whole CBT/GET paradigm is considered "evidence-based", and so is the Lightning Process and similar quackery in a very rough sense, I think it's better to adopt a different term. I get that evidence-based is the paradigmatic buzzword, but it literally means nothing when harmful pseudoscience is also considered evidence-based. And it is. This is the problem.

Not that I expect lots to follow, but using science-based or a similar term would be more accurate. Because as absurd as it is, most of what she said would be considered evidence-based by, rough estimate, maybe 80-90% of MDs, at least in a general sense good enough for them to at least recommend it as worth trying. That's one of the main consequences of propaganda appropriating technical terms, it often removes all meaning from words that should have an important one. But that term has been thoroughly trashed into meaningless garbage.

In the end, the only thing in the evidence-based medicine paradigm that is based on science is whatever scientifically valid facts go in, but as a process it has nothing whatsoever to do with science, and is pretty much the opposite for all intents and purposes, what comes out is usually made worse than its input.
 
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