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

Marina Diamandis, singer

Article in the Rolling Stone: Marina Opens Up About Tiring Illness: ‘It’s Been Hard to Remember What Healthy Feels Like’

Marina Diamandis, the pop singer who performs using just her first name, opened up on Wednesday about her recent diagnosis of chronic fatigue syndrome. “I’ve had symptoms like deep fatigue, numbness, tingling, brain fog, rashes, insomnia and a feeling of being ‘poisoned’ for so long it’s been hard to remember what healthy feels like,” she wrote on Instagram. “My baseline energy has been at 50 – 60 percent for a long time. Aside from a few periods of remission, the last 7 years have consisted of relying on adrenaline and willpower to push me through each day.”

(...)

Two months ago, Marina suffered a flareup that included “shooting pains and burning sensations all over my hands, legs, and back,” according to her post. After consulting with doctors and reading material about the illness, the singer said she learned that the symptoms come from a “hypersensitive nervous system.” She describes it as, “my body has felt stuck in ‘fight or flight’ mode.”​

Her Instagram post:

 

Wow. I really used to like her music at one point and a couple of her albums in particular; I saw her perform when I was feeling better in the past. I hope she is okay. I kind of got put off when she started taking about a lot of psychology stuff that I think she had potentially started studying part-time and it was quite new-agey and about self-improvement in a way I didn't relate to at all due to circumstances in my life making this not possible and a bit upsetting. I had lost track of her and unfollowed her socials for this reason.

I wish there was better information out there so that famous people could advocate better for the illness when they get it. It seems to take people a long time to understand what has happened, if they ever do. Again, I hope she is okay.

 

Marina Diamandis:

"After a lot of reading, I now understand that these symptoms are a result of a hypersensitive nervous system, developed in response to chronic stress. ⁣My body has felt stuck in “fight or flight” mode and there were many warning signs it gave me before the worst symptoms set in.

Regardless of the trigger, the key to healing seems to lie in retraining the nervous system to regulate itself again."


After a lot of reading of *what*? Sounds like yet another celebrity captured by the mind/body brain retraining cultish industry.

 

Chris Marques opens up about the serious illness he suffers from

https://euro.dayfr.com/books/520439.html

 

Exactly. To be honest this is the sort of reason I unfollowed her socials. I think she studied this stuff either beforehand or as a response to what has happened to her (depending on the timeline of when she has been ill). It would actually make a lot of sense if she is trying to make sense of becoming ill and has basically been hanging onto these ideas. Unfortunately it seems to be the norm of what happens to people - other people I know with ME have become the same. It's all just the same story repackaged.

Edit: Don't know how to share but on Marina's insta story it says this in response to some comments:

"I think that's why I think it's important to be open about it.
Masking/suppressing symptoms only prolongs the condition and inhibits healing as it adds more stress to the body"

At least she's not suggesting that people can mind-zap their way out of it but the use of the word "stress" is unfortunate. Hopefully she can still do some good; she seems to have been ill and working for 7 years so maybe she tried to ignore it and thinks being open will help her recovery. Anyway I wish her luck and hope she can help eventually.

 

Rolling Stone headline refers to "Tiring illness" re: Marina

https://twitter.com/user/status/1679473422156419075

 

Marina has shared her issues with burn out, severe panic attacks, mental health and an eating disorder earlier in her life, that's not to say she doesn't have CFS.

She also got COVID after being double vaxxed and felt 'terrible', it's possible that this pushed her health over the edge.

 

Familiar, yet IMHO a piece of the puzzle is missing.

I attribute to the late Dr Paul Cheney the hypothesis that the nervous system in ME is initially rendered hypersensitive by an immune process raising systemic neurological responsiveness including the autonomic system, which in turn makes stress more impactful along with generating other neuralgia.

It is no fault of the patient's lifestyle, it does mean we have to change lifestyle to adapt.

My sincere sympathies though to everyone with this kind of illness.

 

Morgan Fairchild has MECFS and partner had LC apparently.

https://me-pedia.org/wiki/Morgan_Fairchild

https://twitter.com/user/status/1679693482544496641

 

That is very sad news. She's an excellent follow on social media: previously Twitter, I have followed her since last year on Mastodon at @morgfair@newsie.social

Strong interest in science and politics.

 

2015

I received a response to my email from Morgan Fairchild:

Thanks! I'm so sorry to hear about your long-term issues with CFS. I know
I got off easy with this disease. Please know that I will continue to
help with this by seeking attention and funding for it.

Best,

Morgan

 

A light-weight article about Martine McCutcheon sharing on Instagram that she had suffered a big flare up of her #CFS lately.
https://www.thesun.ie/tvandshowbiz/11105677/martine-mccutcheon-weight-loss-family-holiday/

 

Martine McCutcheon shares health woes as she shows off her new style on holiday

https://www.mirror.co.uk/3am/celebrity-news/martine-mccutcheon-shares-health-woes-30585772

eta:
Martine McCutcheon reveals she's had a 'big flare-up' of ME in Mallorca as she puts on a leggy display in polka dot dress
https://www.dailymail.co.uk/tvshowb...lorca-puts-leggy-display-polka-dot-dress.html

 

This article doesn't include that many details

Casey Stoner provides health update on chronic fatigue issues

https://www.crash.net/motogp/news/1...provides-health-update-chronic-fatigue-issues

“There was a period in which things seemed to have improved, then upon returning to Australia I started having problems again,” Gazzetta quotes Stoner as saying.

“Between Phillip Island and Christmas 2021 I had Covid three times. My body is weak, I go from moments where I feel good to others where I just have to lie on the sofa.

“But I wasn't as bad as I was at the beginning [of the chronic fatigue diagnosis]."

 

Covid fatigue can come and go it seems. I also noticed this in my own personal experience with leg muscle exhaustion without exertion from getting Covid (I assume) last December and a vaccine the next morning w/o realizing I caught Covid. I also got my 5th vaccine booster the end of May that made my muscle exhaustion worse for a couple of months. I am slowly recovering.

I've decided not to get the Fall booster this year and won't be going out much to be safe.

 

Bloom

Emerge Australia welcomes recording artist Bloom as our newest Ambassador.

https://www.emerge.org.au/people/bloom/

 

11 signs and symptoms of chronic fatigue syndrome

https://www.walesonline.co.uk/news/health/11-signs-symptoms-chronic-fatigue-27441719

 

The trouble is that, as we learn about our illness, most of us probably go through phases where we look seriously at strategies we'd later consider nonsense. There can't be many ME patients who haven't at some stage got hooked into trying supplements, for instance, or enthusiastically sent someone a paper they'd later regard as dubious at best because they've learned to evaluate them.

Most of us get to make our rookie errors in private, or at least in small patient communities, but celebrities make theirs in public. They might have poor access to well-informed online groups due to privacy considerations, they'll be targeted by every wellness shark out there for their money, and they may be pressured into speaking publicly about something to retain the profile they need for their careers. It's frustrating when they come out with some of the "healing" stuff, but I also have some sympathy for them.

 

Oh, absolutely. I only meant celebrities who don't have any vested interest, such as Martine McCutcheon and Marina Diamandis. Sometimes they may post (or be quoted as saying, not necessarily accurately) things that are slightly frustrating, but they're not actively working against fellow patients or trying to line their own pockets by promoting discredited theories. They're just trying to muddle a way through it, like the rest of us.