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.

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.

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.

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.

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.

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.

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 ❤️

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'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 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.

Thanks for all the comments - especially from those who are using precious energy to write.

To clarify, I am not throwing shade at Miranda herself (sorry if it came across that way), or hating the fact that she - and others here - have found something that helps them. I "wish she wrote a different book" because of the way it's being interpreted, and used as another 'you're not trying hard enough' stick. Do I worry for her if she's used Lightning Process techniques? Yes, I personally believe they can be dangerous, but that's up to her.

I understand the brain/body link (used to be a psychologist), and how stress - emotional, cognitive and physical - can impact me. After living with ME for about 35 years, through the improvements and set backs, I've worked hard to find balance.

I hate the term CFS, for the very reason that it is often conflated with chronic fatigue, which is a symptom of many different conditions, and can (and sometimes SHOULD) be 'pushed through'. In case it needs saying, ME/CFS is very different - pushing through is dangerous, can cause permanent decline, and is absolutely NOT advised. Unfortunately, I believed the medical professionals who pushed GET, and now live with the consequences.

I apologise to those who saw this as a Miranda bashing thread, I'm not necessarily a fan, but I wish her well.

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.

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 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.

I can understand your upset and frustration. May I offer a little insight into what I think may be happening?

When you've been living with long term conditions for so long, you've had lots of people trying to tell you things that have made them/their friend/someone they've heard about on the TV better (not necessarily cured, but people often hear 'better' as that). You become jaded, most people who have many years under their belts have tried a multitude of different things to improve their situation, including falling for snake oil sellers. You can start to view anyone who talks about a cure as trying to sell something.

I'm not for one moment suggesting YOU were trying to sell anything (snake oil or not), but we all view the world through the lens we have developed through our own experiences. Many people in the groups you are talking about have had years of searching for a cure, to find nothing that has helped, and so find it difficult when people tell them about something else they should try. (Again, I'm not saying you are pushing anything, just that this may be their perception.)

Please don't be disheartened by their responses, as the saying goes "you can lead a horse to water, but you can't make it drink". Perhaps they have tried what made your life better, and it didn't work for them, perhaps they're tired of using precious energy trying new things and want to concentrate on what makes the life they do have liveable, perhaps they're not in the right headspace to think about it.

I'm glad you've found something that works for you, unfortunately, due to the nature of the condition, it's not likely to work for everyone with ME.

The biggest problem with this discussion is the conflation of ME with Chronic Fatigue. These are two different things. CFS means Chronic Fatigue Syndrome, and has been used to refer to ME, although this has long been a disputed use of terminology by the ME community. Chronic Fatigue can be caused by many conditions, as mentioned by PPs and therefore may often be alleviated when those conditions are treated. ME (CFS) has, as a defining criteria, the presence of PEM - Post-exertional Malaise. This means that symptoms are made worse by exertion and this may make the long term level of illness worse. Many people on this thread are referring them as if they are the same thing and I have seen no reference to PEM.
So, whilst I totally understand people who recover from Chronic Fatigue saying that they were able to recover using approaches similar to that detailed by Miranda, this is not appropriate for people with ME. As far as I can see she had Chronic Fatigue caused by Lymes Disease which was misdiagnosed as ME/CFS.

I get what you’re saying and there does seem to be strong evidence that an ongoing level of permanent recovery is possible if you can get to that point within 5 years of symptoms starting. Unfortunately it seems that after that 5 years it becomes extremely unlikely that a person with ME will make a full recovery to pre-illness life.

It’s amazing you found something that worked for you and you were able to recover. However for most that’s not the reality and it feels totally unfair. Perhaps if the knowledge we have now about the condition was available a few decades ago and we weren’t instead exposed to harmful treatments then more of us would have recovered. Once you are multiple decades in it’s hard not to feel resentful that you can’t recover in a way others have or that you potentially made yourself worse by following treatments that were recommended at the time and are now known to be harmful. That’s not your fault for recovering but there is a level of resentment/jealousy from those who are still ill as it appears to them that it’s reinforcing the narrative that they could get better if they just tried harder.

Im one of 18,000 people who have submitted DNA to a research project which is trying to identify the underlying cause which will hopefully lead to a diagnostic test and reliable treatment. We want to be better but when you’ve spent decades being told ‘just try this, it worked for someone I know’ and then it doesn’t it’s extremely disheartening.

Im fortunate in many ways, I’m not as ill was I was a decade ago, I’m able to work part time from home, I can travel, I can do things I enjoy. I have to balance my life with rest and quiet, I follow a clean diet, no alcohol, take supplements, go to yoga when I’m able, get fresh air, engage in therapy, have regular Accupuncture. I agree that the brain is key to improving a large number of health concerns, I think a lot of people experience physical symptoms as a result of trauma responses they are unaware of. Through therapy I’ve made a significant improvement to my chronic headaches and tackled the anxiety I developed from being ill. This has helped improve my quality of life but I’m still not well. Those with ME are extremely resistant to suggestions of anything to do with the brain because of past theories of it being ‘all in your head’ or ‘just depression’. People are very sensitive about this, which is entirely understandable given the years of disbelief, dismissal and misunderstanding by the wider world. This was perpetuated further in recent years by the suggest CBT was a suitable treatment when in fact it is only useful in the process of learning to accept and live with your diagnosis, it will not improve your symptoms but potentially could prevent falling into depression as a result of them.

I’m no longer bed bound but my life is limited by my condition and I constantly have to ensure I’m pacing. I seem to have reached the ceiling of the healthiest I can be, so I work hard to maintain that but I know it’s a potential for it to come crashing down at any point. There is so much that has been taken from me because of my illness and I’ve had to come to terms with that. I’m not resentful of anyone who is able to recover, I wouldn’t wish for anyone to have to live with this.

Like @WWLD I’m frustrated by the continued public perception that anyone can recover if they just try harder or try this new thing. Books like Miranda’s aren’t saying she’s found a cure but the fact is most people won’t have read it and will just see a headline about chronic illness and recovery and conclude that’s what it is, further perpetuating a false narrative that causes harm to those who are still ill.

Im happy you’re doing well and am sorry you were misunderstood by those in the community.

exactly this

100%

Chronic fatigue syndrome/m.e is NOT the same as chronic fatigue. The former is a condition with immune and neurological symptoms of which fatigue is a part. The latter describes chronic fatigue by literally any cause.

There is an element of glass half full/half empty about how many of us deal with chronic illness.
I’m a glass half full. I accept my ill health and work around it. I have learned not to crave a different life and not to try and keep up or envy others apparent wonderful lives. My life is great, I just can’t always join in like I used to. I have found other ways to live a fulfilling life.
Maybe because I have others around me who are in a worse position I feel lucky to be in a better position.
My younger sister is currently on the end of life pathway. She is mid fifties, had bc aged 33, diagnosed with Parkinson’s 4yrs ago and then stage 4 ovarian cancer a month ago. Her life plan had to change after her bc diagnosis. She has been an inspiration to us all since she always pushed herself to achieve as much as her body and mind allowed her. She was still running until a couple of months ago.
I never feel that life has been cruel to me, I have a long history of medical problems, I just look at my sister and think how lucky I have been to be a mother and to continue in my beloved career, something my sister was unable to enjoy.

The op may never get better, adjusting to this and living your best possible life is the solution.

YANBU.

Here's the level of "science" included in Hart's book, where she's describing how some woo woo dipshit did an "experiment" where he spoke kindly to one bowl of rice and nastily to another:

“The bowl spoken badly over started going mouldy in a way the other didn’t. I KNOW! Talk about the power of words.”

And yet she is also feels qualified to write things like this, where she's talking abut the "brain rewiring" model, which is basically the old lightning process :

"It’s slowly filtering down from neuroscientists’ studies over the last four or five decades to GP surgeries and becoming the understood universal answer in the healing of many chronic illnesses, in particular ME/CFS, fibromyalgia, food and chemical insensitivities, and now long Covid."

The UNDERSTOOD UNIVERAL ANSWER, everyone! It's here!!! Such fun!

I wonder why people are still suffering?

I am very much at peace with my chronic illness. Have planned my life to work around it.

But what really made the big difference was doctors discovering a medication that works for Myasthenia and discovering the tests that diagnose it in more cases.

Surely some of this "positive energy" should be directed at wishing for more research into the physical causes can be directed and wishing people would accept it does have a physical cause albeit one that hasn't being diagnosed yet. I don't think it is negative thinking to be frustrated at ignorant assumptions

I don't feel hugely sorry for myself but also I refuse to accept that toxic positivity ( where society expects me to feel relentlessly cheerful because someone else has it worse/it makes them less uncomfortable ) is the solution.

Epic

My neurologist will be thrilled at all the money saved on meds.

I have only listed to a bit so far (after my curiosity was piqued this morning) but so far it is just waffle that doesn't really say anything. Am curious to get further in

Maranda Hart didn't have ME did she had undiagnosed lymes disease. I do think it should be considered when dealing with chronic fatigue but it's not the same thing so that would be my answer, I don't have Lyme disease
It's not even comparing apples with pears it's comparing apples, with fish.

I was about to try and write similar without causing distress to others, but you did it way better! So I've amended and chopped my comment down!

There is lots of misunderstanding still about M.E. amongst doctors and scientists.

I used to have a GP, now retired, whose personal opinion off the record was that Fibromyalgia, CFS and ME are all the same disease with a differentiated emphasis on symptoms. That was her opinion and the private opinion of some other doctors she said, although she said some doctors simply don't believe it exists full stop and she told me to start growing a think skin, because I was going to be confronted with much scepticism thinking from professionals.

I have personally also been told by a consultant that he didn't believe in anything except Myalgic Encephalomyelitis. Fibromyalgia and chronic fatigue syndrome were, in his opinion and his own words to me: 'doctors not doing their jobs properly' His words not mine.

The problem is CFS has always had a more fluid origin than M.E., which was said to come on very suddenly and is actually classified as a central nervous system disorder. CFS was said to come on gradually and have any number of origins; post viral, accident, trauma, autoimmune disease, pituitary gland dysfunction. Hence the potential to get better once identifying a possible cause is greater.

I have also heard stories similar to some poster's here, people using certain apps or NLP or certain therapies and they are 'cured'. If you think of chronic fatigue as a cluster of symptoms with fatigue being the all encompassing one rather than as a disease (I neither agree or disagree) then it's less hard to understand how one person can appear to do better than others and that some people will never find the cause, and even if they find the cause, may still not be able to improve enough to recover, whilst another person finds their way and appears to recover.

So you can have a group of people with CFS who recover - end result is improvement in quality of life

Another group with CFS who do not recover/get worse/recover partially - end result is a poorer/severely poor quality of life

A group with Myalgic Encephalomyelitis who may have sporadic periods of doing better, but never recover and can get sick to the point of death - end result can be a very greatly deteriorated quality of life

The middle and and especially the latter group particularly, is vulnerable to any suggestions by well meaning people, but especially people of status and authority that there lies simple cures that simply involve rethinking, reframing stress etc. The DWP actually spent money trying to debunk the condition existed at all to save money and if you refused to do graded exercise (a therapy they are still selling just calling it by a different name) then that was proof that you had a psychological illness and liked being ill and you put in the same category as 'drug seekers' - that's how vulnerable this group is.

In regards to CFS there is mainstream medical speculation about various causes including circulation issues, and small cell neuropathy. I am not up to date on any current theories.

PEM needs specific outlining. Most everyone will feel more tired after activity if they are already running on low energy reserves after all. The difference is how extreme it is. Besides becoming bed bound and in some cases, unable to eat, not being able to even talk, reduced to stuttering and slurring my words like an alcoholic who has been drinking for days or (apologies) someone with a brain injury is the result of doing something as simple as a trip to the cinema on the previous day. Someone said something about Audiobook and I had to smile. It's too hard (and painful) to concentrate on something like that without constant rewinding to the point of not bothering anymore on a bad day. Although hey people may be different.

This is a brilliant summary.

And why it is so frustrating when people think that because they or someone they knew got better from chronic fatigue just by thinking themselves better, that doesn't mean someone who is not getting better from it must be thinking negatively/not accepting their condition etc.

I really hope more research can be done because I want everyone to have that moment where doctors understand the mechanics of what is going on in their body. It's so clear ME has a substantial neurological component.