Tales of the Unexpected: A letter reaching out to Miranda Hart to discuss her book and approaches to ME, Long Covid and Lyme.
Audio version in the Substack mobile app
Dear Miranda,
In the spirit of the very sensible advice to be kind, I thought I would write you a letter. To keep this personal and connected. Can we have a gentle discussion, woman to woman? Shall we set the scene with tea of solidarity and hobnobs of peace?
In the recent flurry of publicity around your new book, ‘I Haven’t Been Entirely Honest With You’, there’s been a lot of attention drawn to the treatment of people with chronic illness, especially Lyme and ME.
I saw you on the Graham Norton Show, and you have so much to give to this heartfelt topic for millions. It’s not an easy subject to discuss or admit to. Your empathy, compassion, and ability to turn the dynamic of the conversation to fun and laughter while staying on point are so needed in this arena. Memoir can have the power to touch lives and do significant good.
Your story is like a mythic tale: the descent, the obstacles, and the treasures, much hard won through struggle and revelation. It is truly the stuff of the hero (and heroine) of a thousand faces and worthy of any fine cause.
So, let’s cast our own spell and have an adventure, exploring the wisdom fairy tales can tell us. I’ll stoke the fire and we can get comfy (there are definitely more blankets) and go on an imaginary jolly of ten tales.
Tale One - The Cave - Medical Abandonment
Shall we start at the same place? This is the same cave, the same hole, the same descent that many, many people with chronic illness experience: Medical abandonment. And in our imaginary, playful world, I offer you the biggest hug. Anyone who’s been through this hell, and it is a hell - the referral roundabout, the blank stares, the hostile medics - deserves better.
Noone had any answers for me. Doctors would tell me, after various tests would return as inconclusive, that it was probably stress and anxiety. Miranda.
No wonder you and many others try alternatives to an orthodox medical system that has failed us so badly. Somewhere where there is control, power, you are listened to and validated. No one should spend 35 years without a diagnosis, without knowing what is wrong with them and be repeatedly dismissed. It is clear that you’ve suffered too much.
Much of your book is about how to live a good life. Ted Danson in The Good Place would be thrilled at this escapade: how to love, be connected, be authentic. I’m glad that you’ve dared to try to live a good life despite what has been thrown at you. And that you got your happy ending with The Boy - What fun!
Yet, we need to talk about this alternative you found. Can we do that? Can I offer another biscuit and gently question whether this is as clear cut as it might initially seem?
Tale Two - The House of Mirrors - Ambiguity
The alternative you give in your book is a mind-body approach. You take into account the physical and the mental and it is presented in a clear and accessible way.
Yup, there it was - it would not be until my stress response reduced that my nervous system and immune system could go back to any kind of homeostasis…I finally understood why getting out of bed became a no-go for my body. Miranda.
Sounds great - what is wrong with incorporating all aspects of ourself to find a solution? Now, this is where we find ourselves, dear chum, in a Hall of Mirrors. Unfortunately, it’s not so straightforward. As we sit here, in our armchairs, hell, we might as well have another hob nob. Would you listen to the reason why?
You see, in the modern history of ME and many illnesses that have unexplained symptoms, there was in the 1970s a move to classify them as purely mental, literally as ‘mass hysteria’. This was a direct push by two psychiatrists, McEvedy and Beard. Now, I can hear you say how awful, and I completely agree. This is where you and many of us started their descent into medical abandonment. Why? Because if these illnesses were solely mental, there was no need to do any biomedical research and therefore there are no answers. Which is what happened.
This is where another mirror flashes. In the 1980s, another group of psychiatrists theorised that there was a dual or hybrid explanation for ME. That not only was there a physical basis for ME, but that there were mental or psychological factors involved. You portray in your book this mind-body view:
Many people I know who have had CFS or long covid or chronic pain say that before they get sick, they were in a period of stress and/or difficulty. Miranda.
Yet, the problem is MDRC (my dear reader chum), is that this view is not accurate. We might have moved from the purely mental view to a combined, mind-body approach, but this has created a hall of mirrors, a lot of ambiguity for the community that we still haven’t escaped from. This is because when we raise the issues that we still don’t have the care or effective research for ME (and now Long Covid) we are deflected with the assertion that “we don’t care about mental health” and “of course this has to be part of the picture”. This view has been taken up in the commercial sector as brain retraining and in other alternative therapies.
Let’s pull the blankets up and I’ll reach over a hand and we can investigate some of the problems with this view.
getting stuck in this state can cause complications - symptoms, like unsurprisingly l, exhaustion, not waking up refreshed, irritability, a feeling of being overwhelmed, sleeplessness, muscle tension, migraine, fatigue, discontent…If this state goes on for long enough we can end up with secondary issues like pain, arthritis, skin problems, food insensitivities or IBS. Miranda. (State referred to is a “stress pot stuck on full.”)
Tale Three - The Labyrinth and The Goblin King - The ISTs.
I think we are of a similar age Miranda and likely remember the classic Labyrinth with David Bowie as The Goblin King, Jareth? He’s charismatic, complex and not an outright villain. Yet, having a chronic illness that isn’t recognised does feel like one has been kidnapped by the Goblin King and stuck in the middle of a labyrinth, right?
Yet, when we look for alternatives when the system fails us, all sorts of complex characters emerge. Let’s talk about the ‘ISTs’ you describe in your book.
Treasures – practical tools, values, ways, answers researched from some great scientists, neuroscientists, therapists, sociologists (all the ‘ists’) out there, that have genuinely led to a sense of freedom, joy, peace and physical recovery I never would have thought possible. Miranda.
Now, I say this gently, but the ISTs you describe are not experts on post-acute viral and infectious illnesses such as Lyme, ME and Long Covid. They are what I would call generalists in the mind-body field, some of them controversial, fringe ISTs, like Sarno and Gordon. The most important IST that isn’t mentioned directly that much in the book is Brain retraining therapist, Alex Howard, on whom most of the theory of the book is based on. On the surface, all looks glittery and sparkly in this mind-body world. Loads of people are said to have recovered. It’s all about finding our authentic, wild selves. What’s wrong with that?
Here was the clear link showing how hiding ourselves…is disastrous for our holistic health and happiness…It’s no wonder so many people are tired and anxious. Miranda.
The thing is Miranda, that below that veneer many patients don’t recover and can’t receive safe care because the NHS has perpetuated this model (called the Biopsychosocial if you need the term) since the 80s. These are the ISTS that haven’t really been our friends. Why? Because the research money and NICE guidelines (till 2021) followed harmful behavioural, psychological intervention. Just like your book. And it doesn’t work. There are still millions without a treatment that reliably causes any level of recovery or remission.
Yet, before we get all doomy and gloomy, let me introduce you to some remarkable individuals in the IACC (Infectious associated chronic conditions) world! Let’s sit in a cosy nook in our labyrinth, as we find our way out and meet some figures around the tea table. There’s Prof David Putrino, who’s instrumental in setting up the Cohen Centre for Recovery from Complex Illness; there is Dr Mikki Tal from the Tal Research Group; legend Prof Ron Davis from Stanford and member of the OMF; Prof Nancy Klimas at the Institute for Neuro Immune Medicine and more in the community. The nub is that none of them would agree that a mind-body interpretation is the right path out, none would concur with this.
And, so, drumroll, GET THIS - evidence now suggests that this is how long-term condition such as long covid and ME/CFS start. Basically, when the acute virus has left the body, the immune system Never Gets The Message. The fatigue persists…and other symptoms occur because the brain is still on high alert. That’s the condition in a nutshell. Miranda.
Now, we all need those in authority to give credence and weight to what we say and especially when we are dealing with medicine. Yet, MDRC, I don’t feel you’ve been entirely honest with the quality of ISTs that is provided to validate what the book is saying. There are no citations or evidence provided. I understand that isn’t the market or style that the publication is geared towards. However, we can’t simply rely on your word, as Marianne Levy in The Independent points out, that this is a valid pathway.
But the cause and the solution are in the brain’s heightened stress response. Miranda.
Tale Four - Temptation of the Juicy Apple - Holism.
I hope you are still with me, my dear chum, as we continue on our quest. I can understand why you’ve abandoned the medical model that is notoriously reductionist, only seeing us in tiny sections. What could be seen as a more compassionate and inclusive approach is the holistic pathway.
Let’s talk about it. You’ve proposed ten treasures in your book. And that’s quite a haul in most fairy tales, the hero is lucky to attain one treasure. All of these: Share; Surrender; Feel, Grieve, Let the Past be the Past; Thought; Loving Ourselves; What we do What we do; Play; Pacing and Presence; Don’t Fear the Setback and It’s all about Love in the End, are noble and worthwhile endeavours for any heroine.
The problem comes when you state that they influence illness and recovery:
I also saw that a lack of self compassion, self respect, self love - and the resultant toxicity from negative thoughts or bad habits - would of course be contributing. Miranda.
We see throughout your book that the brain rewiring model is used as your recovery tool. This is basically the hypothesis that the brain is stuck on a high stress response and that this is causing the body’s symptoms.
Yup, there is was - it would not be until my stress response reduced that my nervous system and immune system could go back to any kind of homeostasis…I finally understood why getting out of bed became a no-go for my body. Miranda.
There’s a lot already written on this, so please have perusal if you wish. (Schraer and at LCA) In fact you give up all other models to pursue brain rewiring aka neuroplasticity.
I decided to only do the brain rewiring to recover. Miranda.
Our brains are plastic. We can rewire and grow healthier trees and kill off the toxic ones. Miranda.
We come back to the issue of ambiguity with the mind-body problem, of including the emotional and mental in disease. Because disease and illness are present throughout nature, in things without brains, like trees. Lifeforms that can’t or do not have the capacity to find their wild, authentic self to be healthy.
And if we can use our thoughts and intentions to alter the growth of bluebells and rice, like you state in your book. Then it is not long till women (and it’s always women) are blamed for ruining the harvest, spoiling the milk and to blame for their neighbours’ illness or the latest plague. There’s perpetually a bum deal for women and witchcraft.
The problem is this, and I say this kindly with as much love as I can muster that this is pseudoscience. It isn’t what neuroscience means by neuroplasticity. Dr Camilla Nord, a neuroscientist from University of Cambridge, states
I’m afraid now we’ve strayed very, very far from neuroscience,” Dr Nord says, calling this an “abuse” of scientific terms.
You see appeals to holism with vague, untestable claims and an improper collection of evidence are some of the hallmarks of pseudoscience. As well as justifications from false authorities and argument from anecdote.
The mantra of holism is often slapped on all sorts of therapies as green washing is used by many corporations. Looks good on the surface, but there’s a murky mess underneath.
I want to be honest with you, MDRC, and I say this with a firm hand squeeze that many of the therapists that lead these brain rewiring courses aggressively court celebrities. And not just celebrities, anyone with a media presence often gets approached by these companies with tales of recovery from desperate states and how they offer a way out. Olympic rower, Oonagh Cousins, confirmed this and I’ve experienced it myself. It’s only as a community we don’t wish for you to be used like this. You’re one of us and we want the best medical care for you.
The real rub, the real injustice, is that it shouldn’t be up to any individual, celebrity or not, to platform a way to some level of recovery because medicine has failed to do this.
I kept my dreams and passions hidden for a long time. I am intrigued as to whether these kinds of small ways we go against our nature lead to emotional and physical health problems and niggles. Perhaps it was no coincidence that before I finished my third year, I was heading back to my parents house after many infections and viruses had first significantly weakened me. Miranda.
I am going to say this to you fairly and squarely: there is nothing that you did or didn’t do, that you thought or didn’t think, felt or didn’t feel that led to your illness and your symptoms. It was not your fault on any level.
Tale Five - The Invisible Dragon - Pseudoscience
So, let’s dig deeper into this. Why does holism and its relations have such power, such hold? O and by the way, did you know that I have an invisible dragon in my garage? Let’s call him Bernie (O this is Carl Sagan’s metaphor.)
Well, I don’t really, I’m not being entirely honest with you. But you see, you can’t prove I don’t have an invisible dragon because it’s invisible and dragons don’t exist. Some philosophical play? Karl Popper (legend science philosopher) said that we don’t have to prove something for it to be scientifically valid, we just have to be able to disprove it some way. He called it falsification. And if a theory is unfalsifiable, it’s pseudoscience.
I discovered that fatigue, lethargy, and apathy are often the energy of trapped anger. If I let out some feeling of anger, verbally or physically (my poor cushions!), I was amazed how often my fatigue lifted. The mind-body connection was proved in an instant. Miranda.
Do you see how in this statement that no one can prove that fatigue is often the energy of trapped anger? That the mind-body connection cannot be proved in an instant? How it might be a teeny-weeny bit irresponsible to say that it is?
There’s a paradox in your book. Now the initial part I completely agree with. And this is the medical silencing (do have a peek at Rageshri’s book Unheard) that we experience because we are told that anxiety and stress are the cause or a factor in our illness. How utterly frustrating! You bravely tell us how for many years you were mis-diagnosed with agrophobia and anxiety. As a result of this, you experienced too much medical gaslighting and abandonment.
But the answer you propose in your book is that anxiety and stress are factors in chronic illness. Much as the hybrid psychiatric model does in medicine.
A lot of that was undiagnosed Lyme disease and other viral load, but some of it was my body saying there were some anxious-making lifestyle elements which were adding stress and inflammation to my immune system. Miranda.
Now, I actually agree that we need a holistic model. But it isn’t in this way. Because chronic illness affects multiple body systems and crosses medical specialisms, we don’t get answers. What we require is either our own specialism that can examine the interconnectedness or a model where the specialisms communicate with one another. Much like the Cohen Centre for Recovery from Complex Illness.
Tale Six - Phoenix - Thoughts
Freedom, myths, beliefs, these are all heady powers. Just ask Boris Johnson and the natty tatty populist slogans that are thrown at us. And do you know what one of the most seductive of these is? The idea that our thoughts create reality. Now, of course, on some level they do. I can think of reaching for a french fancy and hey presto I’m nom noming away. But that is only if I have a plate of french fancies in front of me.
Treasure Four, Thought, goes into this in some depth. Now, of course, you’re not Jean Grey able to manipulate and reshape reality with your Phoenix power. But on a more subtle level you claim.
Thoughts really can make you feel and stay ill. Actual and literal fact. But also - visa versa. Yay! Miranda.But I knew that changing the thinking response to my condition was the only way I would have a chance to get well. Miranda.
I am not sure you realise how dangerous this is? Because where do you draw the line? Is it all illness that is affected by our thoughts or only ones that don’t have accepted solid medical evidence? Are people with cancer and Parkinson’s psychological patterns driving their illnesses?
You see, I think if you had say oral cancer (god forbid) and a celebrity wrote a book saying this, it would not be a proportionate or safe response.
The words we speak have a profound effect on our wellbeing. Our brains hear everything we say, and if we’re constantly repeating a story like ‘I’m so exhausted’ our physiology will respond and it will affect our mood and disorder. MIND BLOWING. The number of times I would say things like, “it’s like wading through treacle,” or “ it’s such a battle. Now, phrases like that make me feel instantly weak…Eventually I stopped saying Lyme or any of the other diagnostic words…to reduce its power. Miranda.
People should stop saying the word cancer because it will reduce its effect? Can you empathise why some in the ME, Lyme and Long Covid community are a bit cross? Do you see how this is disinformation? Can you see how reducing recovery to pithy treasures risks descending into misinformation? Would Selena Gomez be quite so empathetic if you told her to never say the word Lupus and to burn all of her medical records?
Miranda, a lot of this is about disease prestige. It’s permissible to express these things about ‘lesser’ illnesses, but there would be a public outcry and backlash from cancer charities if you wrote this about the C word. Even though we know that if we look at the quality of life for ME, it is the same as stage four cancer.
You, my dear chum, have the freedom as an individual to think, believe, and practise what you like. You can pray to the gods of rain and water of Exaloesha if you wish as a way to recover. The issue comes when you write about this and include others. With this comes responsibility, especially when making bold declarations like this:
So every fear or irritation towards my physical condition was worsening it. Even perhaps, for all I knew, a reason it was being perpetuated. Miranda.
Tale Seven - The Damsel in Distress - Medicine and Feminism
But I want to say that the community is here for you. You are part of us because you have experienced an awful, debilitating chronic illness. And advocacy is hard and with publishing this book, you have become an advocate. That takes bravery, to tell your story, to release it to the world, especially if famous and especially with a stigmatised illness. So well done you.
Yet, as an advocate, there is wisdom to be gained from the experiences of those before us and we can draw inspiration from the knowledge of those around us, and I sincerely hope that on your path you can embrace the inherent feminist activism needed to deal with this issue. Much of this letter is about Allyship, and my intention is to be a good ally to you and my hope is that you aspire to be an effective ally for us all.
So, why is this a feminist issue? The most obvious reason is that ME predominantly affects women, with estimates of up to 83%.
Now it’s my turn to tell you a secret, because woman to woman, we all need to know this. This mind-body theory that you describe is often portrayed to be a modern discovery. This is described as cutting edge and as neuroscience.
Cutting-edge neuroscience shows us what spiritual wisdom and teachings have told us through the ages… if we are in toxic stress, from the negative thoughts, it can lead to pain, inflammation and disease. Wow. Miranda.
But this mixing of the emotional and mental lives of women has been around for centuries if not millennia. It has a name: Hysteria. It’s an emotive, tough word to hear. It conjures up images of raving, mad women. That’s not us. And you’re right, it isn’t. Its heyday was in the 19th century when there was pretty much a whole industry dedicated to it with well-respected doctors theorising numerous mechanisms (all that included the physical) to give validation to their theory, and made a lot of money. In many ways, hysteria has never left. It has just morphed into different words and ideas. Can you see why I want you to understand your history, to be a conscious voice in women’s rights and medical care?
There you have it. Love isn’t just a nice idea. It keeps the mind, body and brain well. Again, wowsers. Miranda.
In the 4th and 5th century BC, the Greeks thought the womb wandered around the body, causing extreme stress and wild, untameable sexual impulses. Sound like fun?! This was an improvement though to the idea that illnesses were caused by vengeful gods, thanks Hippocrates. In the middle ages, the humoric paradigm continued but with a Christian twist. Our negative thoughts, actions and emotions (also called sin) caused our disease. One of the main treatments for disease for women in classical and mediaeval times was to get married.
In the 17th Century, we had the theory of animal spirits or Doctrine of the Nerves where invisible, weightless substances made in the blood triggered the nerves and gave rise to a medley of emotional and physical symptoms. Even in the 18th and 19th century there was perceived to be an ingrained connection between women’s mental health and their illness and pain. Emotions, trauma, abuse were inextricable parts. This led to a lot of misdiagnoses and the suspension of the real causes of disease to be found.
Can you see how this isn’t new?
The only way I would feel fully free and healthy would be if I allowed myself to be whole with another. Miranda.
I understand that in your book, you do not purport marriage to be a cure for women’s illness. But, it also isn’t as straightforward as this. The arc and the big reveal is your marriage. Which is wonderful and I wish you many years of happiness. It is just that happiness, safety, contentment and peace, all positive emotions from a happy relationship and love, are portrayed as having an impact on your health.
To develop a healthy nervous system, we need to be loved and approved of in all aspects of development in order to create that felt sense of safety. Miranda.
We’ve been told as women to calm down and get married for centuries to be well. It’s often more to do with medical misogyny not wanting us to cause a fuss, so things don’t change. I for one, have had enough of that baloney, sister! Let’s be free from this crap!
I could feel my body relax, as it knew that it could begin to trust me. An absolute key for chronic illness recovery. Miranda.
Tale Eight - The Secret Garden - Disability and Misrepresentation in Publishing
Disability is underrepresented in publishing, yet there have also been some seismic changes because of the power of the word. It’s led to female authors countering harmful misogynistic views in medicine that out lasted the then famous doctors. Virginia Woolf and Charlotte Gilman Perkins are more well-known than Silas Mitchell Weir. Who? I hear you say. Exactly.
Yet the Reflex theory of Marshall Hall and the rest cure of Weir were the cutting-edge medicine of the day. I don’t want to bore you too much with history, but we need to know our context as women. The Reflex logic was where the nervous system and brain were aggravated and placed in a state of high stress due to emotion. It would then trigger a multitude of symptoms throughout the body. Sound familiar?
The point is publishing has a powerful role in dispelling these myths and fairy stories. Wollstonecraft, Woolf, Garrett-Anderson and, more recently, Sontag, all paved the way to represent female illness more realistically. There are still excellent modern day examples of illness and disability representation in publishing such as Maggie O’ Farrell and Hilary Mantel. And there are some agencies that do it well, such as Portabello Literary.
Can you see why the journey to allyship is so important?
Yet, there are also ingrained problems in publishing regarding disability representation, including:
Secret Garden Syndrome - where nature is perceived as the healing draft for healing from weakness.
David Walliam’s Syndrome - where famous people get deals and shelf space more easily.
Recovery, Inspiration Arc - it’s easier to sell simple, feel good recovery stories, especially at Christmas.
Lack of representation full stop, or disability as inspiration porn
All of these can be micro-aggressions towards disabled people.
You see, if one is not careful, one can slip into prejudice, specifically ableism and even lateral ableism. Why? Because many of the qualities you describe as being essential for recovery can only happen when we have the security of our physical and social prerequisites met. As highlighted in Maslow’s Hierarchy of Needs:
I’m sure you’ll agree that many with disabilities, illness, especially those with energy-limiting conditions, struggle to be financially secure due to job loss and relationship instability. The benefits system with its pejorative tones and punitive attitude is terrible to navigate with ME. Who knows, maybe you had to write a book like this to meet your own security needs after so many years of debilitation?
As I burned records and journals, I honoured my story with a grief I hadn’t allowed from the start. (I was veritably Spanish). Miranda.
PS: One can’t really claim without insinuations of racial bias that people from certain countries have a longer lifespan because they express their emotions more, so they can consume more pizza and pasta and thrive, as you do. Tell that to the Japanese.
Blaming mothers and implying that a stressful pregnancy causes a lack of safety therefore problems with the nervous system and brain on the mother is also not a good look:
To develop a healthy nervous system we need to be loved and approved of in all aspects of our development in order to create a sense of safety…There might be some very simple ways that our brains detected danger: from being left to cry to long, from a mother with a stressful pregnancy. Miranda.
Yet, it’s amazing how pervasive and pernicious this view is. I remember being blamed for my child being autistic because he had been diagnosed with a possible life-threatening condition in the womb and my ‘stress’ had therefore caused him to be autistic. Hannah Gadsby is a female comic who does an excellent job of disability representation and telling her own personal journey and her struggles with masking.
To be honest, I’m amazed there isn’t a disclaimer by your publisher Michael Joseph at Penguin Random House or that your agency Curtis Brown didn’t insist on it. There is usually one in any book claiming recovery methods in a medical context. Especially when you’re recommending the treasures as what to do in a crisis or collapse. There are many reasons for collapse and yes many with chronic illness avoid hospital but someone might be internally bleeding with undiagnosed vascular EDS, or be having a stroke or have Covid with a plunging oxygen level. There should be a mention of seeking medical assistance. And I don’t say this lightly, as it’s easy to sound like a raving conspiracy theorist, but let’s have a closer look at safety.
Tale Nine - The Fairy Castle - Safety
Well, I don’t know about you but I need a cake break, so let the fairy castle be made of cake! This is quite a lot to get through. I hope you are still with me, my dear chum. I know you likely don’t receive many 6000 word letters. But the book touches on a vast number of implications and a complex history and present. And most of all, because this matters and you matter.
Do you know that brain retraining has been shown to be one of the most dangerous interventions for people with ME? It’s been around for decades in the community, so we understand the consequences of it. There are several types from Alex Howard, of the Optimum Health Clinic’s, RESET program, The Gupta Program, DNRS and The Lightning Process. All are based on this principle:
If we start to send signals to the brain consistently…that we are safe, if the brain notices we are actually “playing”, it lights up, and the immune system will feel safe and go, ‘Oh hold fire, the main threat is over, we’re ok, we can stop giving her so many symptoms now to force her to rest, stand down. Miranda.
It has got to the point where it’s been a subject of investigation from the BBC’s File on Four and the NICE guidelines for ME/CFS specifically state that people with ME should not be recommended the Lightning Process. There is also important patient testimony and more worrying, an unethical trial that tried to give the Lightning Process to children. More here.
Because as we sit here eating our fairy cake, I must say I’m concerned for you and a bit worried. You see, one of the reasons that brain rewiring is so dangerous is that it conditions patients to believe that their symptoms are coming from their brain and not from disease pathology. So, people are told to not name or label their illness so they don’t perpetuate their symptoms.
if we’re constantly repeating a story like “I’m so exhausted’ our physiology will respond and it will affect our mood and disorder. MIND BLOWING. The number of times I would say things like, “it’s like wading through treacle,” or “its such a battle. Now, phrases like that make me feel instantly weak…Eventually I stopped saying Lyme or any of the other diagnostic words…to reduce its power. Miranda.
The crux is these programs tell us to think we are recovered when we are often not. It’s a form of inaccurate brainwashing. Which is why I’m confused about your recovery and worried about you. In treasure six, you are still not well and have to stop work and your dream is to be able to bake a cake.
It was particularly painful that I had to halt work pretty soon after my first role in a Hollywood movie. Miranda.
In treasure seven:
I was living in a small way, internally flapping, agitated, like the butterfly trapped in the room. Thinking about dreams and values had given me more verve but the desire to get out and on with sad vim and verve led to frustration…had become beaten down. Not just by recent illness, but because I’d fallen into yet another worldly trap - that play was not important. Miranda.
In treasure nine, which is pretty far along the treasure trail, you are in your worse setback, the ‘Silly setback of doom, drudge and despair.’ And I feel for you, these illnesses are ones of relapse and remission. But your brain retraining therapist (who is likely Howard) tells you:
Why do you want to get better? When one of these specialists, or should I say the specialist ‘ists’ (bit of fun), on brain retraining to reduce the chronic stress response said that to me, I knew it was important but considered it in some ways rather cruel…The IST continued that without a clear answer to that question, it would be hard for me to recover. Miranda.
Your instinct told you this was a horrible thing to say and I’m going to look squarely at you with love and say this is a deeply unfair statement to convey to someone with ME, with any illness. Why? Because he places the blame on you for not recovering. I have seen people waste years of their lives trying to mine themselves of their issues to try to find the root cause within themselves to force a health recovery or to make their relationship work. Do you see how this means that any failure of the RESET program cannot be pinned on the therapy? Because the patient can always be held as ultimately responsible. Handy.
On social media you have said that you are not offering a cure, or way to recover, that you are not recovered. The concerns about your claims have been reported in the media too. I think this is where ambiguity and the pressures of the publishing industry collide with selling a recovery story and timing it with a comeback, as there is quite a lot of certainty that the treasures work and you are recovered and all from brain rewiring:
PS I got better with play.
I want to share the answers that were vital for my recovery - from long term illness to living my life in a much more meaningful, free and joyful way.
With the discipline to keep working on the tools that reduce the stress response, and the surrender to release control over what I can’t, my ordeal is over.
I was experiencing the physical and emotional lift of walking, nature and play. I don’t believe, with the disease I had been dealt, I couldn't have recovered without them.
I decided to only do the brain rewiring to recover.
I already believed the treasures to be right and true, but to experience them all in a 10-minute moment in my garden to placate myself was extraordinary…I now knew what to do in any moment of chronic crisis. I knew what to do in the next 10 minutes. All the treasures releasing me. Wow.
It’s just if one isn’t careful we end up in a Jim from the Vicar of Dibley situation where criticisms and claims can be deflected because of the ambiguity.
Brain rewiring courses are also notorious for telling their participants to not have anything to do with people who don’t believe, to not listen to any critique of their views. Kinda culty?!
Any criticism is perceived as a threat to the brain and body. This means that self-criticism can put us on a high-alert fear response. Miranda.
The last point on ME and safety is about exercise. I hope you (and your publisher) know that exercise can be very harmful for people with ME, and lead to permanent deterioration. The NICE guidelines are clear that exercise should not be recommended to people with ME, yet you clearly recommend it:
Our mind and body need to be exercised to gain strength. Miranda.
My concern is that you have stated you have ME and people with this condition will be given your book. Yet, we get worse with exertion and exercise because of PEM (post-exertional malaise) or PESE (post-exertion symptom exacerbation). It is often why brain rewiring is dangerous because PEM is often ignored and denied and patients are told to override their warning triggers because it is their brains and not their disease causing their symptoms. And this just isn’t backed up by modern science or NICE guidelines.
We feel we want to conserve energy when fatigued, but actually the energy cells recover with movement, not without it. It can be very counter intuitive to go on a walk when you are lethargic, but if lethargy is often the repression of anger or grief rather than exhaustion, then movement mobilises, releases and therefore re-energises. Miranda.
It’s not the disease causing the symptoms, it’s our brain. MIND BLOWING. Miranda.
I think one of the problems is that you are just not aware of PEM, as there is no mention of it in your book. It is not fatigue or exhaustion. I can’t say if you have PEM. It is part of the diagnosis criteria for ME. Yet one of the main issues with ME is that it was excluded from some diagnosis criteria and became conflated with different illnesses where it wasn’t harmful to exercise.
PEM is most definitely not caused by limiting beliefs, fear of lack of exercise and dance breaks are not going to help either.
I can see I had become bored and exhausted because I’d spent years focusing on the potholes. Miranda.
Woman to woman, with a friendly hand squeeze, it is not your responsibility or anyone who has read your book to take the responsibility or the blame for any symptoms of disease.
I was going to take responsibility for following those values I knew I needed, those which were curing my body of exhaustion and viruses. Miranda.
Tale Ten - Out of the Labyrinth - Community and Allyship
Goodness gracious me, are we out of the labyrinth? Are we back in our armchairs with a pot of tea? What a journey. I do apologise that this took so long, but it’s a complex labyrinth we have to navigate and I sincerely hope you are with me and out of its traps and twists and turns.
What we are left with is community, which is something in your lovely, accessible way you are able to communicate with others. And community means everyone. It means all those with chronic illness, all those with lyme, ME and those who have been medically abandoned. It is inclusive of those with mild to very severe symptoms. No one should get left behind.
Inclusivity is an important point. Any approach or treatment program has to include everyone or have caveats. And this is what concerns me the most. Anyone, at any age, any severity can get Long Covid, ME, Lyme and we need to take responsibility for that. And this is what most concerns me about the ideas presented in your book. I have a young daughter with severe ME and I feel it would be an awful thing to tell her that it is her feelings or inability to express her wild authentic self, that is one of the reasons she is ill and because she doesn’t feel safe:
If there is physical pain, chronic issues, disturbed sleep, digestive problems, discontent, there is likely a dear little feeling rumbling around that needs to come out. Miranda.
You start your book with the metaphor of the cave within the boulder, that you have to go through the obstacles. I would like to suggest another way and that is for all of us, all the community surrounding the boulder and lifting it out of the way so the path is clear for ourselves and others who will be along the way one day. Some of us have more capacity to lift the boulder than others. So I ask of you one thing and I would like to give you one treasure too, made by members of the community.
That is The Tangled Story by Dialogues for ME/CFS, which will give you vital knowledge to help people in your allyship.
The one thing I ask of you is, would you as you do your publicity tour for your book not forget those with severe ME? There has been a lot in the press about the non-existent care for those with severe and very severe ME in light of the Maeve Boothby-O’Neill Inquiry. Can you state simply that there are no beds, no hospice, no wards, nowhere that people with severe ME can be cared for safely? We do not have a cure, an answer or even safe care, so I’m not sure who told you there is a universal answer?
I’m so flippin excited that 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. Miranda.
Because there are 2 million with Long Covid over a million with ME and we are still starving to death in hospitals being looked after by psychiatrists. We are in a crisis and we need all hands on deck to find something that works. And we definitely do not need anymore brain rewiring workbooks. Can you see the disconnect? People are fighting not to die in hospital and you release your book saying behavioural mind-body interventions are needed. That not being able to say no is the root cause of your ME-induced Lyme.
I discovered a new root limiting belief. It was the root…The revelation was this, MDRC: being unwell and being unable to do what I wanted to do was scary for me. Scary because it meant that I might need to say no. Miranda.
One last note, I sincerely wish you a continued and relapse-free recovery. So that you can continue to bring laughter and joy into the world and have many happy years of marriage. I hope that we can bring these two views together in a synthesis to benefit others with love and kindness.
Yours in care and friendship
Long Covid Advocacy
You will have noticed that I haven’t signed this with my personal name. There is a simple reason for this. That's because me and my daughter have the same illness. We encountered doctors who took a mind-body approach. Their assumption? Psychological factors were causing physical illness, and I as the damaged mother was 'infecting' my child. They called social services, flagging it as an emergency. Fortunately, with the help of experienced specialist doctors, the case was quickly dropped. But this is the sharp end... and I have to become another Invisible Woman to keep my family safe.
Extremely well written and well thought out commentary. Thank you.