Well-known, famous people with ME/CFS (public thread)

Natalie Grams, German doctor with longcovid/ ME/CFS https://www.s4me.info/threads/well-...d-19-and-long-covid.14344/page-14#post-540796

She wrote (dictated) a book: Entschuldigen Sie bitte, dass ich störe, aber wir müssen über Long Covid und Me/Cfs reden: Aufklärungsbuch einer betroffenen Ärztin

"I apologise for interrupting, but we need to talk about Long Covid and Me/Cfs: Educational book by a sick doctor"
(I apologise for the poor translation) There ist also an audiobook available.

https://www.thalia.de/shop/home/artikeldetails/A1072627515


Automatic translation with deepl:

"The motto of the new book by Dr Natalie Grams is "Clearing up instead of talking down".

What is no longer possible: working, following a conversation with more than two people, leaving the house without a walker, looking after the children, typing an e-mail, cycling or driving, following the news, hurrying, being taken seriously.


What else is possible: lying in bed with your eyes closed and dictating a book. About Long COVID and ME/CFS - and why we should all learn to better assess these diseases.

Natalie Grams, herself a doctor, describes the dramatic loss of her normal life due to Long COVID and the resulting ME/CFS. In a scientifically sound and entertaining way, she explains what is needed now to finally bring about change for the ever-increasing number of people affected.


A book for sufferers & relatives, doctors & therapists, experts & politicians - and anyone who no longer wants to talk down the issue.


Fine situational comedy and touching authenticity run through this book, so
that despite all the tragedy, readers can't help but smile."
 
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Mij said:
From musician Shaun Ross:

I’ve gotten a lot of comments about weight gain etc and I’m fine with my appearance, but unfortunately others think otherwise. Here is my story on how I got POTS from Long Covid this isn’t a sympathy post. I just wanted to share some knowledge on my life and how it’s been since dysautonomia
https://twitter.com/user/status/1845818851025686792
Click to expand...


upload_2024-10-20_18-52-11.png

Solange Knowles, Beyonce's sister, posted this on instagram in response to Shaun's post. She has a diagnosis of POTS Sjogren's and MCAS.
 
Mij said:
From musician Shaun Ross:

I’ve gotten a lot of comments about weight gain etc and I’m fine with my appearance, but unfortunately others think otherwise. Here is my story on how I got POTS from Long Covid this isn’t a sympathy post. I just wanted to share some knowledge on my life and how it’s been since dysautonomia
https://twitter.com/user/status/1845818851025686792
Click to expand...


I watched the whole video. It was really good right up until the last couple of minutes.

Taking us through the journey of feeling healthy to feeling sick, so relatable and interesting.

Then dealing with fat phobia and in response explaining beautifully how the human body exists and changes.

Unfortunately it all went wrong at the point where “sometimes it’s just mind over matter” came in, along with comments about people making their condition “their whole identity”.

Having said people never know what others are going through, it would have been better I think not throw others under the bus on account of perceiving them to be handling their illness in an inferior fashion.
 
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Ash said:
I watched the whole video. It was really good right up until the last couple of minutes.

Taking us through the journey of feeling healthy to feeling sick, so relatable and interesting.

Then dealing with fat phobia and in response explaining beautifully how the human body exists and changes.

Unfortunately it all went wrong at the point where “sometimes it’s just mind over matter” came in, along with comments about people making their condition “their whole identity”.

Having said people never know what others are going through, it would have been better I think not throw others under the bus on account of perceiving them to be handling their illness in an inferior fashion.
Click to expand...

TBF though, it is terrifying to look at people for whom the illness, that you also have, has come to dominate their whole lives and interests, when you’re fresh to the subject and worried about your own life and will being totally consumed by sickness. Likely wanna maintain your pre illness mindset, if nothing else.
 
Ash said:
Having said people never know what others are going through, it would have been better I think not throw others under the bus on account of perceiving them to be handling their illness in an inferior fashion.
Click to expand...

I didn't really read it that way though. I felt that he was trying to lift himself during a stressful time of dealing with a chronic illness. I was 'miss positive' during the earlier years of illness and it kind of back fired on me, everyone was happy I was so positive but missed the fact that I was unable to walk or stand up for very long for 5.5 years. Sometimes family and friends put pressure when not intentional for you to feel ok.

I understand why you interpreted it that way considering how people with chronic illnesses are dismissed.
 
https://www.phoronix.com/news/Several-Linux-DRM-Orphaned
Several Linux DRM Drivers Orphaned Due To Developer Health

Several of the upstream Linux Direct Rendering Manager (DRM) drivers have become orphaned due to the unfortunately declining health of their lone driver maintainer.

Noralf Trønnes announced on Thursday that sadly he will no longer be able to maintain the kernel driver code he's been managing for years. Noralf noted in a mailing list post his declining health no longer puts him in a position to be able to maintain the drivers he developed and has continued to maintain:

"Remove myself as maintainer for gud, mi0283qt, panel-mipi-dbi and repaper. My fatigue illness has finally closed the door on doing development of even moderate complexity so it's sad to let this go."
Click to expand...

One of the developers on the Linux Kernel has had to step back from maintaining a few drivers due to a "fatigue illness". While it's a small story, and the developer chose to referr to his illness generally, it shows the amount of human potential that's lost due to energy-limiting illnesses.
 
The Guardian: Nao on fame, motherhood and living with ME: ‘I’ve had to work a lot on what my idea of success is’
Shortly before [her Grammy and Mercury prize-nominated second album Saturn] came out, Nao revealed she’d been diagnosed with myalgic encephalomyelitis (ME), a disabling condition that left her profoundly fatigued and darkened by what she calls a low-grade depression. “You can only do a small percentage of what you were capable of,” she says, nursing a coffee, a rare treat while following a low-carb diet that helps her recovery (she will return to touring later this year). “For example, walking to meet you here, I’d probably have to take a taxi home. And then I’d be in bed for the rest of the day.”
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Nao on Wikipedia
 
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I've gone through all the search results on Wikipedia for "chronic fatigue syndrome" and "ME/CFS" and added all people with pages on Wikipedia and have or once had ME/CFS to the category "People with myalgic encephalomyelitis/chronic fatigue syndrome" if they weren't already there.

I added 46 people to make it a total of 146. The list can be seen here: Category: People with myalgic encephalomyelitis/chronic fatigue syndrome

One interesting person with ME/CFS I came across was Lady Elizabeth Shakerley, who was a "British party planner, writer and socialite from the Anson family" and "first cousin once removed of Queen Elizabeth II".
 
forestglip said:
One interesting person with ME/CFS I came across was Lady Elizabeth Shakerley
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An interesting couple of paragraphs from her Wikipedia entry:


Following the stress of planning her own debutante ball in 1959, Lady Elizabeth founded the firm Party Planners in 1960.[5] From then on she planned parties for her cousin, Queen Elizabeth II.[6]Even after her marriage, she continued to be known as Elizabeth Anson professionally. In 1986, Shakerley published Lady Elizabeth Anson's Party Planners Book.[7] In 1993, she notably organised a 50th birthday party for Ivana Trump's then fiancé, Riccardo Mazzucelli, but later sued Trump for not receiving £6,500 of a £36,500 dinner bill. The courts eventually ruled in favour of Trump.[8]

Notable events she planned include: Sting's 1992 wedding to Trudie Styler; Margaret Thatcher's 70th birthday party in 1995; Queen Elizabeth II's 80th and 90th birthday parties in 2006 and 2016, respectively; Crown Prince Pavlos of Greece's 1995 wedding to Marie-Chantal Miller; and a reception for foreign royal guests the night before the Prince William's 2011 wedding to Catherine Middleton. In 2000, she planned three consecutive events for the royal family; Prince William's 18th birthday on 21 June, Princess Anne’s 50th birthday on 15 August and Princess Margaret’s 70th birthday on 21 August.[9][3]
 
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