To wish Miranda Hart had written a different book?

[WWLD]

OK, I know I am, but for the 4th time in as many days, I've had someone suggest I read her book because "she cured herself from ME, you can too" (or something along those lines). I'm sure she had the best of intentions in writing it, I know she's said she's not claiming to be cured, or that it will work for everyone. However, if 4 intelligent people have taken the same thing from it, I'm worried.

I've had ME for nearly 35 years, I have tried many different things to try and help over those years. I've lived through the 'yuppie flu' and the whole NHS believing 'it's all in your head's, so I'm pissed off that someone with a platform is basically continuing this narrative. Especially coming out at the same time as the coroner's inquest report on the death of Maeve Boothby O'Neill.

As I said, I know I ABU, but I honestly thought we were getting somewhere.

YABU. She isn’t claiming a cure so that’s completely unfair. Maybe read the book before you start trashing it.

In the interview I saw, she definitely said Lyme Disease.

I would suggest that the fault lies with the "4 intelligent people" and not with the book. Full disclosure, I have not read the book either but when my husband was dying of cancer I had similar "intelligent people" saying similar stupid things.

Huge sympathy op.

My dsis has long covid and the effect on her life is shocking. The one upside being that it has affected so many in the medical community that it cannot be dismissed and there’s a serious amount of research ongoing (which hopefully will impact other auto immune and chronic fatigue conditions).

And while there are many practices that help her live well with it, those things take energy and effort that often just aren’t available. And she’s bloody entitled to rage and grieve instead even if it’s not “helpful”. I think your “friends” are insensitive.

I cannot even imagine how devastating it must have been to live through that “me me me disease” phase of disbelief though I supported my bf through anorexia as a teen in the early 90s back when the medical profession believed that was just wilful refusal to eat sensibly and treated her with contempt. Even though she’s a healthy weight today, the distrust and fear of doctors has stayed with her.

I haven’t read Miranda’s book. So I really can’t comment on it one way or the other. Sounds like your friends haven’t actually read it either. 🙄

Am I/are my acquaintances/the articles wrong? Does the book/do the interviews not say that?
I think you should read the book because then you will know what she actually did say.

I think there will always be a group of people who want to deny what ME/CFS is, what it is really like.

Nope she doesn't say she has ME / CFS caused by lymes disease but she does reference CFS, anxiety and a number of other chronic illnesses. And speaks in depth about all of the viruses and various ailments that she did suffer. Her book is very clearly a memoir of her own experiences and not a manual or guide. She lightly references research and says how it helped her. What I take from the book is a positive attitude and a reminder to accept and be mindful of your bodies needs, rather than how to fight / overcome a diagnosis or disease that you can't control.

I do not have ME or any related condition.
I have read the book and took it in the wider context of finding balance in life.
I really enjoyed it, it was very well researched, delivered with much love and compassion to the reader.
She speaks a lot about stress being a big contributory factor to illness, and how to alleviate it. But it is also more widely relevant to anyone who is carrying unresolved issues from the past.
I would certainly recommend it to anyone, the OP included, whether or not they have a chronic illness.

Unfortunately, it takes me months to read a book. That's why I'm asking questions of people who HAVE read it.

YABU
It's a raw, honest and very interesting account of how she has been seriously affected by Lymes disease (and still is) since she was 14 years old.

I honestly don't see why she's getting so much flack for it.

"Unfortunately, it takes me months to read a book. That's why I'm asking questions of people who HAVE read it."

@WWLD it's really worth getting it on Audible.

I’ve just read an article about the Maeve Boothby O'Neill inquest after reading this post and I’m sad to say I also thought ME/CFS was caused by anxiety and depression. I’ve read a book by a (not famous) psychologist that mentions it and I have a friend who’s a hypnotherapist who has talked about how hypnotherapy can help. I’ve never thought it was “all in someone’s head” but that it was a physical illness caused by a mental one. The Maeve Boothby O'Neill story is heartbreaking and I had no idea it was an illness that could be terminal.
I have a long term misunderstood condition and I’ve been accused of making it up by family, experienced being discharged by doctors who just haven’t known what to do with me, and had suggestions from people who know nothing about the condition, so I know a little of what that feels like. But I guess the misinformation and outdated views about ME made me think that emotional therapies could help treat/“cure” it

She said on the Graham Norton show that her diagnosis was "ME caused by Lyme disease"

I was 99% sure that's what she'd said so just checked on iPlayer to make sure.

Oh God yes, this.
I was increasingly unwell a few years back, to the point I was barely functioning, and it turned out to be stupidly low B12. My body can't absorb it so I need high strength supplementation. It boggles my mind how many <narrows eyes especially at my mother> insist all i need to do is eat meat and i will be cured. I've explained it, words of one syllable style, numerous times but it's like talking to a wall. I could eat half a cow every day and my levels would still drop through the floor. Do they believe me though? Nope.

It's incredibly tiresome OP and I feel your pain. But I think she's such a popular figure and many people will be interested in what's been going on for her the past couple of years, so i think it's fair enough she wrote about it. I think you just need to find a short, tart response for the idiots.

YANBU but like others I think the problem lies with your aquaintances rather than Miranda Hart (as you've said yourself anyway) but just wanted to add that I think she even warns against giving unsolicited advice to people with chronic conditions in the book.

I would definitely read this book because I believe in miraculous healings, I and family have had and keep having numerous such and plus, I like her

Thank you - I expected to be flamed in this thread, but I didn't expect to inspire anyone to learn more about ME. That means a lot.

Thanks - articles in The Independent and Guardian suggested this is what she said. I don't know if the fact that CFS is another name for ME is causing confusion in the media?

Miranda Hart can only write about what she experienced and what worked for her, nothing else.

There aren't very good physiological therapeutics or drugs for ME, so in the absence of those treatments, psychological ones are mostly the only ones available.

I feel a bit sorry for her, nothing she says sounds outrageous to me, but she's wandered into a very upsetting and polarising area.

I don't find it upsetting if someone suggests my migraines are affected by stress, I know they are, but that isn't the cause of them, which may be genetic, hormonal or who knows.

I'm sorry the people around you are so tactless OP. After all this time they should understand there's no easy quick fix and Miranda Hart would say that themselves.

People giving unsolicited and unhelpful advice to people who are very ill should be banned. It's the same with having cancer where you will be sent every newspaper article and book and thought that comes into people's head, unasked.

What they should do is ask you how you are, and if you have seen her new book which looks really interesting, and look for signs that you want to hear more. If the answer is no, stop!

I have literally given up trying to explain the difference between ME and chronic fatigue. And by chronic fatigue I don’t mean CFS.
I like Miranda and I appreciate her point of view.
However, you have to know if you align yourself in any way to some of the clinics she has credited, you are going to get blowback.
I have heard it all - it’s in your head, you really should try tofu, take some Vitamin D, yoga heals.
I have spent a fortune on cures/clinics, pushed myself when it was stupid to do so, and been abused by some medical professionals who should have known better.
I am sorry to say OP most people still don’t know what ME is. A lot think it’s MS. They think Long Covid is bollocks. Education is important but most people I know aren’t they interested.
I have a few loved ones and close friends who believe in me, who see how hard I try, and I have become more at peace with it. Trying to fight to be heard has just become a thankless task for me.
I still live in hope that a cure will be found.
As for Miranda like many people who use systems like LP they do miraculously recover. I have seen ME patients do the same. Then within months they crash because they are running around in empty.
I don’t wish that for her, I hope she stays well.

I understand how you feel. I've had CFS/ME for 28 years. I'm mid 40s now. I've had the "have a baby, you won't have time to be tired", "do some exercise it'll make you feel better", "have some therapy". My parents in their desperation spent lots of money they didn't have on treatments that didn't work and witnessed my consultant ripping into her registrar in the 90s for telling me it was all in my head in her clinic.
Its already hard to live in world with an illness that others don't understand without people with a following not being more careful about how they discuss it.
Thankfully for me I have very understanding family, including my parents, husband and 2 kids.
OP, please look after yourself

The have a baby cure! My GP told me that would cure ME and endometriosis in one go.
I didn’t take her advice but used to be offered as the cure for everything!

I completely agree with you, OP. Relatively few people will read the book but many, many more will have heard her interviews, or snippets of her interviews, saying she had Lyme disease which led to ME, and mentioning ME and Long Covid. That’s the nature of a book launch and she should have thought more carefully about the impact of talking on the subject from such a position of power. It’s been hugely harmful, as demonstrated by the people telling you to read her book (which I doubt they read), and simply adds to the endless swell of misinformation about post-acute viral conditions.

Yep, I've never wanted children - I was told this was just another proof that my symptoms were caused by depression.

Nice to hear there are some good consultants, when my daughter was 15 , basically wheelchair bound , having a home tutor etc her paediatric consultant ( for something else) told her to ‘stop being a burden on your mother’ . Needless to say we never went back to see him .

I get where you are coming from Op.

I haven't read the book yet, but am half curious to.
But the bit about insensitive "advice" hits hard

I have a rare Neurological condition that has huge overlap with ME (based on how my friend with ME talks about her symptoms anyway) and I know how utterly bleak and minimizing it is to have people suggest the latest miracle cure. It's always something like yoga /a superfood or something. And the implication just seems to be that they think I am ill because I don't take care of my body . In fact I was doing yoga, eating healthily etc all the time I was getting more and more unwell. This kind of "advice" doesn't just show medical ignorance it also reveals an arrogant judgment about who they think I am.

However, if the book is about making peace with a life with chronic illness then I am all for that. I don't think we have to be happy about it every day but I am doing a little better now I have stopped trying to fight against it.