To wish Miranda Hart had written a different book?

I think the issue is precisely that, Chronic Fatigue covers symptoms with such a multiplicity of causes that there must isn't going to be a one size fits all solution. The very thing that helps one person may be profoundly harmful to another.

It's fine to tell your story, it doesn't mean you didn't have a Chronic Fatigue. But it likely was of a different origin to the fatigue suffered by people who don't get better (or get worse) from the things that worked for you.

OP I get you too. I get very fed up of "have you tried...?" (insert nonsense here). It's very frustrating and I wish people wouldn't do it and would just accept the times when people were ill.

I get you. I have had a similar experience with the mental health community. I was welcomed with open arms until I started to recover from the worst bipolar episode of my life. When I started going out of the house and doing things again, my "friends" who I felt so close to weren't pleased for me. They didn't want to know at all and shut me out. It's doubly shit because people without bipolar disorder aren't great at understanding it either and I often get "you can't possibly have bipolar disorder, you're too nice" from people (including DH for years) who have no idea what bipolar is or what it means to have it and who think it's like on TV where someone's smiling then crying then angry, usually because they know someone with an untreated personality disorder who was misdiagnosed or self diagnosed.

Getting better when you never thought you would is a double edged sword, and all props to Miranda and to you for recovering from a truly shit point in your life.

I have had the joy of ME (for about 5 years) and Fibromyalgia (for about 35 years and counting). With FM you do need to push on through the pain, with occasional rest.
With ME you absolutely should not push on through as this causes the body to shut down more and over react more. You in fact need to consistently do slightly less than you can do your body feels safe and stops over stimulating the immune system. That's why pacing is so shit and makes many people worse.
ME is much worse to live with than FM ime.

I'm always baffled how a group of people can so quickly become so defensive and dismissive on hearing that someone went from bedbound for three years to leading a totally healthy and full life and what worked for them

im so sorry you’re all still ill, or have loved ones who are, its f**cking awful and the not knowing whether you’ll ever get better is the worst (for me at least). But every time I dip back into the community (so rarely now, once a year or so) I get so frustrated at how my own three years of suffering is minimised and the reason I got better explained as I just didn’t have CF in the first place?! PP saying people have a lack of understanding? I lived through it , I tried everything, don’t think for a second I didn’t properly engage with pacing etc , my experience is the same as yours and I am very lucky that I did find a cure for myself. I just wish people would be open to how me and many others did recover, I forget each time I re-engage how angry everyone gets about it. But it’s my story and it’s real

I really very much doubt it is the minority where there is an underlying cause.
I think as testing gets better, we will discover the cause for more and more people. The test for my particular type of Myasthenia wasn't even available until a few years ago

I never once said ‘positive thinking’ was what got me better, it’s not as simple as that and calling it that is the exact unhelpful narrative I was mentioning !

Obviously there are people with CF where there is an underlying pathology in the body that needs to be diagnosed and treated, but I do think this is the minority and I wouldn’t describe these people as having ME

I am glad you got your diagnosis and have found things that work for you ❤️

for anyone who is suffering from any of these horrible illnesses. Last thing needed is being made to feel worse by other people’s lack of understanding.

You don't know what I am "erroneously assuming" or what at all I am referring to. I have said nothing about "positive thinking".

The human body recovers and heals when in a parasympathetic state. That is not woo. That is basic biology.

Forcing yourself to do stuff when your body is screaming no is the very worst thing you can do when you have ME/CFS as this is what tips people over from mild/moderate to severe/bedbound, having to be spoon fed/not being able to move their body.

Op I hear you. The lightening process and ‘70s psychiatrists “it’s all in your heads” brigade did a lot of damage to the ME/CFS community and that stigma hasn’t gone away. There is no cure. We have had a lot of success getting my DC from severe/bedbound to moderate using various treatments but a recent crash has reminded us this journey is far from over. And the medical gas lighting and “she just doesn’t want to go to school” diagnosis when she could barely eat or stand I wouldn’t wish on anyone.

Sorry for hijacking Op, but for those who want a little more understanding of ME/CFS and in particular the tragic case of Maeve Boothby O’Neill, I watched her extremely brave mum being interviewed on BBC breakfast a few weeks ago.

BBC interview with Sarah Boothby

Or search for Sarah Boothby BBC breakfast if you don’t want to click on the link.

The issue is that you are erroneously assuming that all CFS is the same, and therefore the solution for recovery is the same.

It seems quite obvious from my experience and that of many others that "CFS" is bucket terminology for fatigue which will have a wide range of causes. So there quite simply won't be a one size fits all solution.

In some cases positive thinking and gently pushing through may be helpful. In others (like mine, which in fact turned out to be caused by a fatigable neuro muscular junction disorder) pushing through at all could be much more harmful. If the fatigue is caused by something like undiagnosed coeliac then exercise may not be hugely physically harmful (emphasis on may not, I don't know). But there will be huge psychological harm to continuing to power through debilitating fatigue.

I know people who tried the positive thinking approach and ended up many times more unwell. Others who saw at least some improvement. It's not possible to generalise.

Excuse me! I did not say anything about "being in tune with your body"!

Plenty of people have achieved sustained recovery, if you prefer that word, which to my mind is as good as being cured. But do by all means chain yourself to your misery.

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.

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

^ 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

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

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.

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

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.

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

@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.

@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.

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)