Miranda Hart talks about ME/CFS on Instagram

Miranda Hart (UK comedian) has posted two posts on Instagram about ME/CFS and other chronic illness.

1:


2 (video): https://www.instagram.com/tv/B-XggCGFgmr/?utm_source=ig_web_copy_link
She starts talking about chronic illness and ME at about 10 min 30 sec.

In the video she shows a lot of empathy for people with ME and says she hopes that one of the positives that may come from the Covid-19 pandemic is a better understanding of what people with ME and other chronic illnesses experience. She also implies that she has some personal experience of chronic illness but doesn't go into any detail.

She mentions the ME Association and AfME. However, the two chronic illness charities she says she is going to be donating to are Astriid (www.astriid.org.uk) and CISAF UK (www.cisfauk.com). I don't know anything about either of them, but I feel slightly nervous about any charity which is trying to help to get people with ME/CFS back to work. If I was able to communicate with Miranda I would try to persuade her to give some money a charity funding high quality biomedical ME research, as that is what we need more than anything.

 

Someone was telling me a few months ago that they saw comments from Hart that indicated she was thoughtful/aware of people living with chronic health problems. Even if not perfect, that has to be a good thing. Hopefully it's not a result of her having serious problems.

 

I thought she was really well informed. It sounds like she either has or had ME, or has a close family member or friend with it.

 

I agree, but I can also understand it.

In the early days when my condition was milder I would have been keen to focus on efforts to keep me in work. I thought work focussed rehab could only be a good thing.

That was before I understood about illness denial and that there comes a point of change where efforts to support a return to work suddenly become a stick to beat you with. The same person making the effort is suddenly wielding the stick and they don't necessarily realize that themselves.

Unfortunately, being work focussed and concentrating on remaining in work as motivation is, in hindsight, one of the reasons I am so ill today.

 

I thought she spoke SO well about it. The way she talks about daily griefs was really powerful.

 

My impression was that she is very well informed about how ME/CFS affects people but not necessarily particularly knowledgeable about the different organisations, research etc. That is not a criticism, just an observation. I thought she came across as a very warm, thoughtful and likeable person, who could be an effective spokesperson for people with ME if she was willing to get more involved.

Yes, me too. Many of us have put our faith in people and organisations who we have later come to realise are not working in our best interests. I’m not saying that is the case with the clarities she’s supporting – only that I don’t know anything about them and that I feel that best way to help people with ME is to give money to charities which fund high quality biomedical research.

 

I'm sure there are a few out there but I haven't seen any prominent discussion in the media about how the lived experience of people with chronic illness, especially the house/bed-bound, could be illuminating here. Haven't seen a single one yet. I'm sure there are, but they are hard to find. Instead it's people like astronauts, hermits or others who actually experienced something different, definitely further than we are of the experience. Especially with astronauts, who are just about the least isolated people in the world. They are remote, but they are far from isolated and if something ever goes wrong there are billions in resources ready to save them, with hundreds currently on staff ensuring their safety around the clock.

I have hardly seen any of that perspective from physicians either, even less so from clinical psychologists. We still don't really exist to most of them, or don't matter, not entirely sure what to make of it. Except to those who do have personal experience with it. But they are not prominent voices, hardly make more than a blip. Most of the perspectives on this are the same usual naive tripe obsessing over psychology above of basic needs or imaginary problems like lockdown fatigue.

Instead it takes a comedian to have a better appreciation of this obvious parallel than nearly all worldwide journalism and medical professionals combined. Which is also often the case with politics, with people like Jon Stewart and many satirists, who show more clarity than most of the experts.

What a weird species we are. Where most of the experts on a topic seem to lose perspective and it takes people whose job it is to fake human behavior to understand it better than the people who have so dedicated their life to it that they adopted the name of behaviorists. Such an odd twist of fate.

 

I think she spoke with such insight about ME then it would not be surprising if she has first hand knowledge- i hope not for her sake... She is a wonderful person to have on our side.

 

Didn’t she say she’d like to work with the charities? A lot of celebs like to “use” their position for good, just few have viewed our cause as worthy. If Miranda could combine and be an ambassador and perhaps help put out some awareness stuff (MS & Alzheimer’s do this all the time) I think that it Would be useful in boosting visibility and credibility. I don’t think its Realistic to expect celeb involvement, unless mega famous and rich , to help raise us money and I didn’t get the impression she was necessarily advocating for more investment but more awareness and empathy.

because she was drawing parallels with Covid and ME Ito confinement I suggested she contact #MEACTION re. #Millions missing. We have never really broken through in the UK with that and having someone both famous and credible (I don’t think being A comedian/actor means not respected) could help. Dr Charles Shepherd Mea seem to suggest they are investigating her interest too. I could see her teaming up with a charity. My main concern is whenME gets grouped in with other chronic illnesses like FM & POTS it can also diminish it because they don’t have the potential to cause the overall deathly incapacitation ME can and people can think the very worst ME can do is make you have to self occupy from home.

I did like her sensitivity regarding pacing.

 

A friend sent me this - see from about 10:30 (not sure if this has been posted already). Very impressive.

 

Tweets from Miranda Hart today about ME:

https://twitter.com/user/status/1282610182162460673

https://twitter.com/user/status/1282676622907383810

 

Saying something like this in the UK could go horribly wrong.

 

As much as they have been very effective at controlling the narrative and infecting politics with their wild promises, I think they are just that smart enough to understand they are completely outclassed here and any attempt at leveraging that so-called expertise would end up in very public humiliation.

I expect a simple walk back over mere chronic fatigue or maybe a rebranding towards non-disabling MUS with a slow fall into irrelevance. It's one thing to be the Wizard of Oz, it's a whole other thing to step off the stage and actually have to show those fantastic magical powers to watchful eyes. Especially wearing the emperor's old clothes in new bottles, or whatever analogy these weirdos love to use.

 

yes, but

could be 'interesting'.

 

Your well-being
"
I have been researching for a new book. I have been collating all the universal therapeutic approaches to recovery from stress, burn out, anxiety, trauma, and chronic illness that will be simply and practically explained, interspersed with my own stories and experiences.

Healing and freedom is coming your way!"

https://mirandahart.com/your-well-being/

 

she suffers/suffered from agoraphobia and anxiety
"

The Call the Midwife star has been affected by anxiety throughout her career, pulling out of several West End performances of the musical Annie in 2017 with a mystery illness, while she's also cancelled appearances on Call the Midwife and the Royal Variety Performance.

In her 2016 book Miranda's Daily Dose Of Such Fun, the British comedienne described her anxiety as "like wading through treacle", explaining that it even hindered her performing day-to-day activities, like walking to a postbox.

Miranda has also admitted to suffering from agoraphobia - which causes her to avoid certain places or situations. She previously explained: "I thought the world was a bit scary.

"Some people get depressed for six months then pull themselves together.

"I just hid in a room in the house and didn't really go out. It was my blip."

Miranda claimed she will continue to fight anxiety for the rest of her life, adding that she's just "naturally a bit under, a bit depressed".

"I think I'll always be a slightly anxious person. It's just bad genes, bad luck really. I'll always have to force myself to see the positive, because I'm wired badly."
https://www.yours.co.uk/leisure/celebrity-tv/everything-you-need-to-know-about-miranda-hart/

 

Heart sink were exactly the two words that came to.mind.

Good luck to her and anyone who finds it helpful.

I'm just heartily sick of all the people who seem happy to tell me how to live my best life & be the person I was meant to be and so on.I just find it a bit presumptuous and arrogant even when it's well intended.