Miranda Hart - British comedian

https://www.bbc.co.uk/news/articles/c8705wjg2zyo

Comedian Miranda Hart has revealed her struggle with chronic fatigue after being diagnosed with Lyme disease.

In her new book, I Haven’t Been Entirely Honest With You, Hart provides a frank account of the past 10 years, including the challenges posed by ill health.

Lyme disease is a bacterial infection which can spread to humans via a tick bite.

The disease can be easily treated if detected and diagnosed early, but for a long time, the actor didn't know what was causing her to feel unwell.

It often starts with a circular rash and can lead to flu-like symptoms, nerve pain and sometimes a droop (facial palsy) on one, or both, sides of the face.

For most people, symptoms are short-term and can be alleviated by a course of antibiotics, but a minority go on to suffer more long-term symptoms, including chronic tiredness and unexplained neurological issues.

The star says she found it incredibly hard being confined to her home for such a long period.

 

Interview with her after 8am news on Today programme R4

 

Her experience similar to mine. I wonder if she was misdiagnosed with ME/CFS.

Reliable testing is needed for Borrelia, especially for long term infections. Nothing will change in mainstream infectious diseases circles to alter the '28 days of doxycycline will cure you' mantra. Took me 12 years to get back to professional work from diagnosis. I relapse without continual antimicrobial therapy.

 

Sheesh.

Mischaracterizing the nature of a disease is seldom a good thing. Now that I think on it, it's probably always the opposite of a good thing. The Press needs to start showing some spine and walk away from the spoon fed boiler plate.

In about 80 percent of the time. The rest of the time the spirochetes can become entrenched and difficult to treat. When you're looking at hundreds of thousands of cases of Lyme each year, that virtually untreatable 20 percent can ruin lives and drag down communities.

Tip of the iceberg. If it spreads to the heart, it can kill. If it spreads to the brain, think tertiary syphilis. It can undo livelihoods and splinter families.

Please provide some proper Math for context. It's not hard, simply a twist on the 80/20 rule. Tell the good news, but provide equal time for the bad. What happens to the 20 percent? I mean, what really happens to them? Relay the full spectrum to the readers. So it's out there. As opposed to just "chronic tiredness" and unexplained neurological issues. That 20 percent can translate into ruined lives - write about that, spell out those details, even just a few.

It would be good if there were a balance. Tell how most cases of Lyme are easily resolved. Then balance that. Not much needs to be said for purposes of equal time - just enough to convey how the weight of Lyme symptoms might also collapse a life if chance tossed it among the 20 percent.

 

Do we know where she was tested with what type of test? My understanding is that there are private clinics where a significant percentage of people with ME/CFS seem to get re-diagnosed with chronic Lyme using tests that have not been validated.

I was always advised to avoid those clinics, but I sometimes wonder if I might be less unwell now if I had ignored that advice.

 

I see that the BBC have now changed the title of the article to "Miranda on 'joy and fun' of getting married at 51". ??

 

A Lyme diagnosis can be perceived as toxic.

I wonder which diagnosis carries more stigma: ME/CFS or Lyme. I suppose to a certain degree it depends on geography.

Not sure it matters as much as it should, unless the objective is to compare levels of ineptitude.

If the goal is to find out if there is an ongoing Lyme infection, that isn't likely to happen regardless of whether the test is validated or not. And regardless of geography.

 

Lyme is no joke and it's awful to see that she has been through the levels of denial and dismissal. On one hand she is publicly stating she had ME from Lyme:


My only urghhh is she waited until she had a book to sell to actually say it outloud.

This post though just looks like she mining sales - saying she found answers to recover based on research. The "nuggets of wisdom" are in her book. There are 10 of them apparently - likely on the wellness bandwagon but who knows - not that keen on purchasing her book to find out.

I hope it's not Optimum Health rubbish she's put in there.

(The link to FB post won't load due to ad blockers - it's the reel on her page on the 9th Oct)

 

Miranda's been talking about chronic illness, including ME, on her social media for a long time. I don't know if the Lyme diagnosis is relatively new, it seems to be.

Unfortunately, Alex Howard seems to have a PR strategy which involves spending a lot of his time and energy on famous patients (much more so than run of the mill patients imo).

Miranda stated today on her social media that she is not fully recovered and still experiences fatigue and energy issues. I hope she maintains her current levels and sees further recovery.

 

This is true.

She also has a history of truly beautiful work with loneliness for people especially being on social media call all day on Christmas Days on many occasions.

Plus if I were a famous individual and still able to function to some extent in the public eye I absolutely wouldn’t tell anyone about my stigmatised illness, ever if I could help it.

Still, I also do always get a knot in my stomach when someone mentions a numbered plan in a book about illness and disability.

 

Francis Ryan on Xitter:

“Miranda Hart’s new memoir on chronic illness seems very well intentioned but this pseudoscience is worrying. If you’re writing a book after you’ve recovered, there’s a particular responsibility to be accurate to readers who are desperate to recover too.”

​

I’m not sure where the text in the image comes from. Presumably an article in the Guardian.

 

The press quote is from UK Newspaper 'inews' 10/10/2024

'Hart has found inspiration in all sorts of people – Nora Ephron, A A Milne and Brené Brown, to name a very few. But there are some rather more problematic sources in here, too. In a section on the importance of self-compassion, she cites a Dr Masaru Emoto, who conducted an experiment in which he spoke to two bowls of rice, one of which received pleasant words, the other abuse. “The bowl spoken badly over started going mouldy in a way the other didn’t,” writes Hart. “I KNOW! Talk about the power of words.”


It takes only a brief investigation to discover that Masaru Emoto was about as much of a doctor as Gillian McKeith – his work has been widely disparaged by the scientific community. This is not a science book; nonetheless, the obviously unscientific nature of this story will be repellent to a particular portion of her readership, myself included.

Hart goes further. She writes of “the clear science” linking chronic stress to the onset of long Covid, ME and chronic fatigue syndrome. Yet the science on long Covid is very new and often divided. Hart says, of all these conditions, “the cause and the solution are in the brain’s heightened stress response.” She leaves no room for dissent. Where has this assertion come from? Without careful citation of sources, as, say, one finds in Dr Chris van Tulleken’s recent Ultra Processed People, we have to take Hart’s word for it.

It’s a shame, because there is much to treasure in these pages, and the compassionate thinking that Hart espouses will help so many. Perhaps it’s best to take this book as a warm hug from a beloved, if occasionally somewhat eccentric, aunt.'


https://inews.co.uk/culture/miranda...MsSSXdvinKJoQhHCbpEgzu0nwt-vLqTDztUwoutIcvX6R




Miranda on LC, ME, CFS: “the cause and the solution are in the brain’s heightened stress response.” She leaves no room for dissent. Where has this assertion come from?'


Where indeed? From Alex Howard? Who has a huge commercial interest in flogging that misinformation to celebrities who do his publicity for him and help him flog courses?

.

 

Oh dear.

MH has said similar a while back. I don’t recall details. I do remember many people with CI expressed surprise and disappointment.

I recall the hope was that this wasn’t going to become a firm entrenched position. It seems that it is now.

MH had such a fine track record of publicly expressed compassion beginning at a time when most wouldn’t dream of tarnishing their reputations by public association with pwME and other chronic illnesses.

There may be some confusion between the physical illness processes and the accumulation of trauma due to physical pain and societal rejection and abandonment. The disability package deal.

 

Miranda wrote on her insta today 'What I learnt is not a medical cure for chronic illness but the answers I found to live well and joyfully despite it'.

And also,

'Just felt the need to reiterate that what I share in my book, from wide research, were answers that helped me live my life more freely and more joyfully and reduce stress around all of my life including living with a debilitating illness. A lot of the things, surprisingly to me, helped me physically but I am not saying I have found a cure or profess to know any medical in depth knowledge for ME. Which is a ghastly misunderstood condition and many don’t get any alleviation. Which hurts my heart. I just believe reducing any fear when living with an illness can but help our quality of life. But it’s very hard and I can only speak from my experience. It was research that speaks to all aspects of life too. Big love ❤️'

I think there's absolutely a need for a book about how to live well with chronic illness. I know some people will say it's impossible and I agree there are levels of illness where it is impossible to live well and joyfully. However, I think the message that you could have this illness and still be happy is something I wish I'd heard when I was newly ill. I've found it to be true myself. I live well despite it.

I think Miranda is a good and compassionate person. I like her a lot and I think she is handling talking about her illness to the press well. I'm sure the advice she gives will be helpful for many.

Having said that, I feel sad that Alex Howard has used her for PR and convinced her that there is science and 'research' behind certain ideas when there is in fact none, or it such poor quality it doesn't really count. Francis Ryan's point is a good one. I think Miranda's message would have been just as meaningful without claiming things are research backed if they aren't. Her story about learning to deal with stress is enough, it doesn't have to be backed up with pseudoscience.

I also hear her talking about how she is not yet recovered but is on the road to recovery and knows she will get there. I hear this from lots of people who work with Alex - I think they are told that they must believe that they can get better in order to actually get better. I would feel more comfortable hearing people say, 'I truly hope I will recover and I will do what I can to stay positive and heal but we never know what the future holds and if I don't improve any further then I will be ok with that too because I know I can live well with this illness'. Radical acceptance and self-compassion alongside hope.

 

No, sorry, compassion is not just lovely words.

It's really not 'compassionate' to spread the misinformation that in ME/CFS/LC “the cause and the solution are in the brain’s heightened stress response.”.

That's the part the uninformed reading public will remember.

.

 

She's been told that by someone she trusts. Believing what you're told by someone who presents as an expert at a time when you're vulnerable, ill and afraid, doesn't mean you're not a compassionate person.

Being a compassionate person doesn't mean that you get everything right all of the time. I like to think I'm a compassionate person. I'm often wrong.

There are always a few things that mind-body practitioner types espouse which can be quite helpful for stress relief. Picking out what's helpful but not a cure and what's just nonsense is complex and I think we should have understanding when people get it wrong. On balance, I think she's doing well and comes across to me as a very kind and caring person. She's not trying to sell her book as a 'cure' as some people do and I appreciate that.

 

https://twitter.com/user/status/1844425123258040694


Nothing personal at all @mermhart I believe your intentions are in the right place but it would be irresponsible for me not to speak out.

“With great power comes great responsibility.”

80/90% of this narrative is dangerously outdated for #pwME #MECFS

 

Expressing anger made her feel less fatigued, so 'the mind-body connection was proved in an instant'. Therefore if you find that anger doesn't alleviate your fatigue, that means the mind-body connection is *dis*proved in an instant?

(of course not, it just means the goalposts get moved again.)

 

So which book are the images in the tweet taken from?