Miranda Hart - British comedian

I have noticed that generally BPS purveyors, even though their own personal obnoxiousness may get in the way at times, adhere or try to adhere to the rule of sales.

Reel them in. Start off with a softly softly approach. ‘You are really ill’ and ‘You deserve help’, never mind that they themselves have contributed to both the disbelief and the lack of help.

This is followed by a promise that if you’re a good girl or boy, you learn to reconnect with your self healing body potential, personal ambition, and maintain the absolute conviction that you’ll heal, you’ll achieve the health. Or at least as much health as you personally earn or deserve. This latter part may be explicit or implied, but it’s always there.

Ultimately when you publish your story and you’re famous and pretty well liked, you'd have to know that it will have some not insignificant impact and influence. In this case I am sure that MH is perfectly aware.

Going by the material MH presents in the extracts of the book both promoting self-compassion and yet including positive references to this BPS OHC framework, there is contradiction here. Unless MH’s a terribly cynical person, she actually believes that what she’s sharing is useful rather than harmful. We can’t know either way from a distance.
Going by what we do know it looks like MH really does believe in this stuff.

So it’s like preaching the gospel. Except I am doubtful that MH will be prepared to acknowledge that thats what it is. Going by the contradictory statements so far, personal anecdotal story vs appeals to scientific research proving the hypothesis.

I don’t, and also don’t know anyone who watches MH’s comedy shows or reads celebrity or feel good memoirs at Christmas. Still I do know who MH is. I’ve seen her about on TV news interview segments, articles and so forth. She’s very well known. So even if people don’t read the book they will hear or see or read about in the run up to Christmas and given how cosily familiar she is as presence in people’s lives and how willing people are to accept ‘research says’ as justification for just about anything, some of this message is going to land.
Its not going to be good for us when it does. Random people and non so random will absolutely start bringing up particular aspects of this absolute twaddle.

But most people aren’t gonna buy into this type of nonsense in its raw form. But it’s worse than that. The poison, the message that we can overcome sickness and impairment by taking charge of themselves by an act of will and self control, will have made its way back onto the table and into the water jug.

Edit: muddled words.

 

https://twitter.com/user/status/1844907083772338337

 

Thanks @Adam pwme.


It makes sense that a person would feel themselves better physically and emotionally supported by going for the AP Optimum Nutrition Clinic line, if they had ME and or Lyme disease, and the alternative was a diagnosis of anxiety disorder and agoraphobia. A diagnosis given on account of the patient being too exhausted to go outside presumably?

 

Wow, I've never been diagnosed with agoraphobia. That must have been really confusing.

 

Interesting from Miranda on taking inspiration from Selena Gomez on talking publicly about chronic illness. https://www.bbc.co.uk/programmes/p0jx6t4c

 

I think it probably happens more often than you’d hope.

Imagine you just say one day to one influential doctor or probably any doctor really, ‘I feel so awful that I can’t face going outside.’

Then ‘can’t face going outdoors’ lands on your notes.

Everyone especially refers back to this.

They run with it.

 

Well I'm sure she's a compassionate and sincere person, but so what? She's spreading harmful misinformation. In my 10 years of ME I can't help noticing that well-meaning celebrities tend to end up being a pain in the ... , especially if they are in the entertainment business. Sports people with ME tend to be better, perhaps because their standard of recovery is whether they can do sport again so anything which doesn't achieve that for them will be taken less seriously. Pure speculation on my part.

Each time a celebrity gets ME I'm hopeful that it may raise awareness of the illness, but it usually ends up just raising awareness of crackpot nonsense.

 

Doesn’t look so well. What was SG’s book like?

The relevance of MH’s intentions as far as publicly may be perceived and going by her track record, how she has spoken about other sick people before, are that it leaves us with a couple of PR problems.

People are more likely to listen to what she has to say on account of her coming across as authentic and well intended. Guards come down around people like this.

Anyone who tries to tell MH publicly that she’s spreading harmful ideas will be met by the usual ‘it’s my experience response’ but made by someone who comes across as caring, and can back that claim in certain areas, and so the public may well be even more inclined to say what’s your problem everyone is different etc etc take it or leave it.

It’s just easier to succeed in debunking misinformation spread by less sympathetic sources.

So I’d agree having celebrities especially those with a good reputation spreading this poisonous propaganda is a huge problem.

 

Jennie Jacques is an example of a sensible celeb, eg with an engaging interview with Chris Ponting recently, discussing DecodeME. It would be good if she joined us here (and Oonagh Cousins).

 

I think my point here is that it's not Miranda who's the problem, it's the greedy 'wellness practitioners' who have targeted her because of her fame in the hope that she will do free PR for them. They will have told her that there is 'research' to show that stress precedes ME and that anger makes it worse, or whatever the claims are that she's made, and now they're sitting back and benefiting from the PR she's giving them whilst she's getting criticised. I think we should be directing our frustrations at them not her.

Probably not a popular opinion, but I think famous people must find it harder in a way to work out what's going on because they are going to get the hard sell from all of the 'wellness practitioners'. If you have have both a platform and money, you are going to be very attractive to these practitioners and they can be very persuasive. I've always thought that this is why famous ME sufferers often end up spreading 'crackpot nonsense' instead of useful awareness!

[edited for clarity]

 

I don’t disagree that well intentioned celebrities spreading misinformation is a problem and adds to the difficulty of making progress. It’s disheartening, honestly, but I’m inclined to be more charitable than some of the comments here towards people like Miranda Hart (and also Ren Gill in another thread). They like all of us have been subject to gaslighting and bullshit for years. In MH’s case 35 years or so to reach an accurate diagnosis is really tough. They’re not the problem

People tell misleading narratives when they have been misled or lied to by people who appear to be the experts. Many who feed that misinformation are probably well meaning; there are also predators.

Many of us have believed misleading information in relation to our own health, we just happen not to have been celebrities. We all only know what we have learnt and we don’t know what we don’t know until we find it out.

From the little I see of social media I can imagine that she will have an big increase in people all sharing their unsolicited opinions and suggestions, much of it unhelpful, and I can imagine that some of it won’t be expressed kindly. That’s probably been the case since she first shared about her health. I hope it’s not too bad.

I hope now that she has a diagnosis Miranda learns and shares more based on reliable evidence about tick borne diseases and the need for research.

The U.K. medical system needs to take the threat of ticks borne diseases more seriously (I’m not holding my breath). I wonder how many more people in the U.K. have been bitten by ticks and have a CFS or ME diagnosis.

 

I don’t think people are generally angry or worried about MH believing in incorrect information like everyone does. It’s absolutely true that thirty something years of non treatment mistreatment and gaslighting will not leave anyone in the best position to analyse information. Very vulnerable to further manipulation.

But MH is also a woman of means from a wealthy family who can afford to live in a decent home, have care, eat good food, make autonomous choices in life about what to buy and do to improve her situation, access biomedical investigations and treatments for her disease.

MH could also have afforded to pay some actual scientists to have a look at her manuscript in that regard for inaccuracies. MH could have paid some disability campaigners and advocacy groups to check it over for harmful tropes. Maybe she did just this and it all fell through the cracks somehow she asked the wrong people?


The text as it is in extracts seen, leaves ordinary people marginalised by stigmatised illness who can’t afford private biomedical care who are struggling for basic resources in a more vulnerable situation. Not because it is the worst example but because it is one more thing.

It’s MH’s book she will promote it heavily. People will hear about and be influenced by what they hear, not because she’s the best evangelist, but because what they hear will reconfirm their prejudices. Prejudice that poor disabled people have been fighting desperately against for decades and are finally making some limited headway on.

The problematic part of what MH is endorsing in the book are psychology based exercises as healing therapy for physical impairment. The types of exercises where you get a grip of yourself and take charge of your life. The moral imperative to not be sick, to recover by act of will.

This happens to be the exact paradigm that has left us all forced to engage in ineffective therapy denied basic the social and medical supports we need to stay alive.

So it’s not surprising that people are horrified and terrified of what may come of this.

 

were you meaning to quote me?
I wasnt commenting on the content, just asking which book the tweeted quotes were from... shes written several I thought this latest book was called 'Being Ill' but the tweeted images are from a different one.

Am in a bad patch dont have energy to research & an very confused

 

Yes. I thought about it a bit whether that was a straight question you’d asked or you were being rhetorical sarcastic. I settled the latter, I was agreeing. Apologies.


No.This is the new book title:

I Haven’t Been Entirely Honest With You
By Miranda Hart.

The other one is…

Being Ill
On Sickness, Care and Abandonment
By Neil Vickers & Derek Bolton

 

Yes and whilst I like both Jennie and Miranda for the people they are I don’t think it’s just on ME that they are both different in that way. It’s a shame with miranda but she’s known for being quirky annd ‘ooh I’ll give it an go, oops’ isn’t she ? In her programmes at least

Do you think she is the sort that if the journey ends up where she doesn’t feel better long term and so tries another tack she will also tell that ?

or has she been doing this for many many years now?

 

Lol well normally you'd absolutely be right I am very often, if not usually, being sarcastic.
I should have made it clear that the reason i didnt know was because i was confused/fuzzy, but i was too fuzzy to work out that i needed to explain i was fuzzy

 

I imagine Miranda does have more money than most but I think ME is a situation where it doesn't matter how much money you have. I mean, obviously it makes life more comfortable but it terms of recovery I don't think it can do much. In a way, the more money you have, the more you have to spend on quacks and the more confused and lost you will become.

On the subject of money, I wonder, how much money a wellness 'guru'/alternative 'doctor' can make from someone with ME and how much money they can make from someone with Lyme disease? I reckon they can make a lot more from Lyme disease. Ren raises over $100,000 for his treatment in Canada and the cost must be exceeding that now. I may be cynical, and I'm not saying Lyme disease isn't real or devastating to those affected, but I wonder whether all of these positive Lyme tests are accurate. It does seem that anyone who pays a lot to get tested gets a positive and then has to spend a lot more on treatment. It's pretty handy for those taking £100,000s for treatment. Are the tests for chronic Lyme accurate?

 

My best friend who passed away suddenly in 2016 spent over $40,000 US during his 18 years of misdiagnosed Lyme and ME/CFS treatments from 'specialists'.

 

There's reason to be skeptical of any positive Lyme tests - and for that matter, any negative ones. They are almost all indirect tests that only suggest exposure or lack of it. They all fall short on the confidence scale.

It's certainly more conducive to fleecing patients with fake positive tests. It potentially levies a worse impact, however, financially and health-wise, for all the false negatives that belie active infections, and leave disabled people in their wake.

There's nothing easy about the Lyme debate. It's convoluted and polarizing and full of shit.

My rule of thumb is don't trust anyone who dismisses the possibility of Lyme if you live with ticks, and don't trust anyone who tells you with certainty that you're sick with Lyme.

ETA: If ME/CFS is, in part, a mess because of a lack of diagnostics, Lyme is, in part, a mess because of woefully misleading diagnostics.

 

Yes I am sure richer people spend more money and some of the treatment that they buy will be not just useless but harmful.

Still it absolutely does make a difference to your life chances if you have ME or any other disease or impairment. Poverty is disabling on its own.

When you’re a person whoever been living on minimum hourly wages and you become disabled with ME you can’t get any private healthcare, perhaps not even a good home one without mould or asbestos, you live in a polluted area or you can’t buy healthy foods or pay for carers or disability equipment, or suffer your children or buy nice things and go on adventures, that’s when you rely upon society having respect for your physical vulnerabilities and not telling you get your brain back in control and deal with it.

You are gonna be completely reliant on your local GP understanding the nature of your condition. So you’ll need everyone around you not to believe in this mind over matter stuff. For your survival. It’s not a question of whether or not people think badly of you, it’s how if people think you’re doing it to yourself you lose basic support to live.

Richer people can’t escape sickness in their human bodies they do have a better chance of recovery than a person without access to resources. Resources are important for avoiding illness and for improving chances of recovery.