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.

Pregnancy does make some autoimmune conditions reduce in symptoms or even go into remission. But not much help once the pregnancy is over and symptoms are back and you have a baby to care for.

My relative was encouraged by a GP to start having babies when she was still in her teens because it would ease her arthritis! Thankfully she had more sense.

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She hasn't cured herself of anything. I thought the book was about her struggles with certain conditions but was definitely not claiming she was perfect and cured of anything.

I was going to say this. She had ongoing debilitating fatigue following a bite as a child and Lyme disease that wasn’t picked up. Based on her interviews the book is about how she coped with her illness and, ultimately, for her she worked out what caused it. She said on Graham Norton that she isn’t cured but is managed. She could potentially relapse as the illness has messed with her immune system.

so I don’t think Miranda is at fault. But your friends’ lack of understanding could do with addressing!!

I voted you are being unreasonable because I don't think she wrote it "because she cured herself of ME and you can too". I think she went a very long time without a diagnosis and she has written about that and how she managed to cope throughout without that diagnosis.

I haven't read it but that is the impression I'm getting from what I've heard and from her press tour so far.

She did have Lyme Disease. Maybe ME followed that, I don't know. Lymes is very debilitating.

I would really reccomend, if able, to read or listen to the audio book "When the Body Says No" by Dr Gabor Maté. It gave me a lot of insight into how my own life had lead me to where I am now, healthwise. I think the problem is, there is a misunderstanding that ME/CFS is the same as, or actually IS just chronic stress and you just need to calm down and distress to cure - which is where the reccomendations from (often well meaning) strangers comes from. I think the real message is that chronic stress is a trigger that primes our systems for chronic illness and disregulates our nervous and immune systems.

Sympathy here OP, I’m sorry for the pile on you’re getting…bc irrespective of exactly what she did or didn’t mean/write etc, I hear you when you say that you’re frustrated by this becoming another ableist stick for people to bash you with. My DH has MS and this is a repetitive situation for him, and me. People without experience of chronic illness often struggle to understand this. I’m sending love.

That poor girl Maeve , I think its really awful she died because she was physically unable to eat, given there are a variety of ways to get nutrition into people.

@Angrybymyself

"have a baby, you won't have time to be tired"

Sorry but 😂😂😂

Chronic fatigue is a common symptom of Lyme disease and ME. Lyme disease has a well documented and known bacterial cause which if not diagnosed and treated with antibiotics can lead to protracted illness which includes severe fatigue. A simple antibody test will determine if you have had Lyme disease.

ME may well be caused by a viral or bacterial infection but generally a cause cannot be determined.

Maybe the fact that Miranda was able to identify the cause of her symptoms has help her recovery because she has been able to pinpoint the cause.

I suffer with chronic fatigue due to radiotherapy and other adjunctive post cancer treatment. I now have a cause for my fatigue and fibromyalgia type symptoms. It’s much easier to work on recovery when you know why you feel shit.

Im afraid it is all about forcing yourself to do stuff even if your body is screaming no. Otherwise I wouldn’t get out of bed. I plan physical activities so that I have recovery days afterwards. The revelation has been that regular physical activity has improved my problems. But if I miss out on sleep I can easily crash.

Criticising someone who has had a real disease is not very kind. ME and fibromyalgia are still a description of a group of symptoms that science has yet to find the trigger for. Hopefully in the near future there will be a successful treatment that will allow you to get your life back if you want to.

Why are people commenting who haven’t read the book?

I haven't read her book, or any of her books, but from what I can glean from reviews it is a twee attempt to talk about the value of practices that bring the body into a parasympathetic state - which gives the body a better chance at the self-healing it does so amazingly if given the opportunity, when dealing with chronic disarrangement from chronic illness.

There are treatments for ME, whatever virus may or may not have set it off (isn't it Epstein-Barr most people say?), and people have been cured. The fact you seem so wedded to cure being impossible does not bode well for your future.

It is galling when well-meaning people suggest XYZ that worked for their uncle with a completely different diagnosis, but being entirely negative about any course of action ever working will not serve you well, if any level of recovery is what you're after.

it's all about forcing your body to do stuff even when it is screaming no

That works for you. And your condition.

It would be fucking stupid and dangerous for me and I have been told very clearly by my neurologist that I must listen carefully to my body and stop as soon as I get any signs I am overdoing it.

And given I was misdiagnosed with ME for 20 years before finally being diagnosed with Myasthenia I would hazard a guess a fair few other people with "ME" in fact have various variants of Myasthenia (or similar conditions)

My understanding with ME was that pacing was the right approach and that pushing through can bring severe and dangerous exacerbations (just like in Myasthenia)

@WWLD I'm sorry you're getting a bit of a hard time on here.

The trouble is there is so little knowledge about these conditions and they're misdiagnosed so often. I have a daughter and grand-daughter with ME and Ehlers Danlos, and people have no understanding at all of what it actually costs an individual to live with these conditions. To also have people (public and medical) intimating they have mental health issues or they're making it up happens far too often.

I've recently picked up information on what happened to Ren Gill, a British musician, who was misdiagnosed in the UK. He was told he had ME and lost years of his life until he was diagnosed with Lymes. His mission is to raise awareness of these conditions (ME, Lymes, Auto Immune disorders etc).

I'm adding a link to a video he did in 2014 where he was crying out for someone, anyone, to help him get his life back. It's heartrending to watch, but everyone should so they have some idea of the pain and depression sufferers of auto immune conditions have to deal with. The video is a hard watch, his life improved after a stem cell transplant, but his health is precarious.

There are almost 4,000 comments on his video, with people detailing their own struggles with getting help or even a diagnosis. Funding should be poured into these conditions, I'm so sorry you're having to live this life.

@WWLD I completely get what you are trying to say. You are not angry that she has written a book about her experience but that the press for promoting it and the way the media have picked it up is to sell it as a ‘look you can all cure yourselves if you try harder, it worked for Miranda’. As such people pick up in this incorrect narrative and that ME can be cured or recovered from and it perpetuates the myth we are fighting to dispel.

I don’t think this was the intention for the book, she was just sharing her story, but it has been received in a way where the public want a neat story of woman was sick, tried things, got better, happy ending. It wouldn’t be very interesting to read a story like yours or mine ‘woman gets sick, spends lots of money on snake oil treatments, eventually gets a diagnosis, gets a bit better, then worse, then worse, then better, then worse, eventually works out a balance at which she can live but it’s not what many would consider really living and she has to put up with people continually misunderstanding or trying to offer unhelpful advice but she’ll never recover and lives a strange, reduced life, no happy ending here’.

She’s clearly receiving a lot of backlash from people with chronic illness as she’s made statements on social media and turned off comments. It’s unfortunate but is often the response when stories of so called ‘recovery’ are shared. People feel that someone who thinks they have been cured is either just in a period of remission or didn’t have the condition in the first place. This comes from a place of so much frustration from not being believed, having no support, no treatment, wide misconceptions about it being a psychological thing and the unfairness of it all.

After 25 years I know this is my life but it feels so much harder when well meaning people make suggestions of things they have no understanding or knowledge of.

I thunk the problems comes from a person reading or seeing a celebrity write or say something and they believe

The responsibility comes from them the intelligence level of the public seems to shrink each year

Being in tune with your body is definitely a way to improve your health and yes there are some alternative therapies that some people find relieve their ME symptoms. However it is not possible (currently) to be cured and make a full recovery for most people with ME. People may improve, have periods of improved health but it will never be gone and can so easily become much worse.

There is no clear identified cause, so no test other than elimination and most definitely no medical treatment. Most of those who are ‘cured’ end up having been misdiagnosed with ME because of the lack of test. Biggest one I can think of is Esther rantzen whose daughter was diagnosed with ME as a teenager, she made a massive deal about how her daughter has been ‘cured’ by the lightening process (a program that takes all your money, tells you to think yourself better and if you don’t improve it’s your own fault) Only her daughter got ill again and after further testing it turned out she was coeliac and a change of diet was all she needed. However that didn’t get as much press so all anyone remembers us thus person who was miraculously ’cured’ if something she didn’t actually have.

Please don’t spread false information about something you are not suitably informed on. It does nothing to help dispel the myths around ME that many continue to fight.

Telling someone their lack of belief in a cure for their condition ‘doesn’t bode well for their future’ is an awful thing to say and completely cruel. No one is wilfully staying ill, they are just being realistic.

Oh I didn't know that about Esther Rantzen's daughter.

The problem is as with all things wellness, M.E. CFS, Fibromyalgia, Lymes, and now increasingly, mastocytosis, histamine intolerance, ADHD et al (notice the illnesses that scientists and doctors still have not made real headway with) become targets of the wider wellness industry and that is useful...to an extent. It's becomes problematic however, when certain theories take hold, get popularised and become gospel, theories that are easy to understand, are easily accessible, and appear to have easy hacks. Psycho-somatization in regards to understanding inexplicable illness has become a big thing in the last 15 or so years.

So sure, we all know that a headache can be the result of a stressful day. I have no doubt that stressful events can trigger an autoimmune disease or even cancer. No one would doubt the mind body connection. But telling someone who cannot even get out of bed that yoga and meditation will cure them or that being more positive will make their cancer vanish is beyond patronising.

Celebrities taking advantage of the increase in the 'mind body' connection need to spell out its' limitations and make it clear they are speaking for themselves and saying, at best, this may or may not help you too. Anything else is irresponsible. Lay people, yes, even impatient mainstream doctors, can use such information to dismiss their patients. Especially female ones.

Everyone with a chronic illness has had the misfortune of hearing: 'Have you heard of celebrity/Influencer/viral podcaster I WAS CURED BECAUSE I TRIED HARDER? They went through/have the same illness and they still have a massively successful career and completed a charity mountain climb by napping during the day and going to bed early, eating matcha with gogi berries in the morning and taking vitamin D also they tried HRT' you haven't even tried all that yet despite 5,10,15,20,25,30, 35 years of being ill have you?

It's also a problem when someone with long term fatigue tells someone with M.E. that they must push themselves, exercise everyday, and be positive because it works for them. I'll never forget telling a friend in an hours long conversation that I couldn't go to the gym with her or do hard exercise without serious repercussions. To the point of not being able to speak properly afterwards. I explained it fully. I explained how sad it made me. How I missed running. How I hated the weight I was piling on.

She said she understood.

A week later she sent me a video by the viral health guru Barbara O'Neill in which she said HIT exercise every morning helped autoimmune conditions with an accompanying 'Thought this was interesting' message underneath. I burst into tears. Even now that memory really hurts. She clearly just thought I wasn't making effort.

These days I can't even make a doctors appointment without huge anxiety due to the gaslighting I received over the years. They still do things like tell me to 'pop' down to the surgery 2 miles away right there and then, despite me just literally explaining I've had a total relapse.

Honestly, I’m coming from a totally different angle to you, I’m so fed up of those suffering with ME/CFS thinking that the theory of recovery Miranda discusses is suggesting that it’s ’all in our heads’ or that is ‘just anxiety’, don’t get me wrong I know there are some people that do believe this, but people who have recovered are never describing their recovery in this way

I was bed bound with CFS for 3 years from 28 to 31. Unable to work, see friends etc etc. I tried everything , spent thousands of pounds, researched non stop, nothing worked.

I eventually stumbled upon the theory that something like a virus or extreme stress causes the unconscious brain to malfunction which results in it triggering various symptoms in the body. To be clear, these symptoms are VERY physiologically real, I’m not for one second suggesting they are made up or in our heads, but they are originating from the unconscious brain rather than from any pathology in the body (and not unconscious = we are not controlling it / doing it deliberately). Recovery involves rewiring the brain and because this is the unconscious brain this is very hard

this idea that this was the cause seemed crazy to me at first , but it was the first time in 3 years I started to hear of real people recovering. I went from bedridden to dancing at a birthday party in the space of 3 days (obviously months and months after this of gaining back confidence that I could indeed get out of bed and be okay)

when I recovered I shared my recovery with the community of people who I’d become very close to throughout my illness. No one wanted to know more or explore further, and it’s because we were taught to immediately dismiss any theory saying the brain is involved. It upsets me still to this day

^ wanted to edit and say I haven’t read the book and don’t intend to, I just did a quick google to read what she has said about ME

Also to add that I am very sorry to anyone who has posted who is still suffering with ME/CF. It was the toughest period of my life and I had many days where I didn’t want to be around any more. If my post is coming across as rude it is just my frustration around the narrative of ‘this other side is claiming it’s in our heads’ , for me at least, it’s an incorrect narrative that delayed my recovery by a long time as it was repeated so much I bought into it. The constant arguing between ‘sides’ left me feeling very confused and alone

You do understand though that "CFS" is a bit of a bucket diagnosis for people with chronic fatigue where they haven't established the cause?

Positive thinking alone isnt going to cure someone where the underlying cause is actually (even if not identified by doctors) undiagnosed coeliac, Myasthenia, sjogrens, or one of a multiplicity of other conditions that are physical in origin and cause chronic fatigue.

Positive thinking never cured my CFS that turned out to be Myasthenia, in fact I just kept getting progressively worse. The word thing I can do is push on. Rest and pacing is the best remedy and also I now have medication that helps significantly.

I know so many people who baffled CFS for years only to find they had a diagnosable, to some extent treatable, condition all along

I completely understand op.

I haven't read the book and don't intend to. I'm happy she shared her story and I'm not upset about that, but I share your concern about wider public perception.

I've had m.e since flu in 1999. I've tried pretty much everything but the main things that help are eating a wholefood diet, pacing and minimising stress.

Unfortunately my life has been immensely stressful and I believe contributed to my ill health in the first place, along with the flu virus. Further terrible circumstances made me much worse.

Reducing stress makes a difference to many illnesses/symptoms, not a cure but a way to manage it.

It sounds like miranda wanted to share what helped her but people with m.e are sensitive and angry and understandably so, given how we have been treated for decades, with doctors assuming we are 'just' depressed.

Try not to worry. There's a lot of publicity now and I think the tide is turning, it will just take time.