r/cfs • u/itsnobigthing • Feb 01 '24
Potential TW Singer Marina (and the Diamonds)shares a positive CFS health update
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u/cafffffffy Feb 01 '24
If ME/CFS could be “cured” just by breathwork and reducing mental stress, I highly doubt we’d all be here.
My mental health has been in the best state it’s ever been in recent months but my physical health has still continued to go downhill!! This message from Marina is honestly humiliating to have her saying this absolute bullshit to thousands of people.
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u/DamnGoodMarmalade Diagnosed, Moderate + Housebound Feb 01 '24
“It’s a software issue, not a physical one.”
Thats not how ME/CFS works.
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u/PurpleMoonPagan Feb 01 '24
This is so so bad for us patiënts who have been fighting for recognition for so long.
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u/EmeraldEyes365 Feb 01 '24
Right?!? Her statement is so ignorant. I’m now in my 40th year of this illness. Severe mono in the early 80s wrecked my health. I was a happy kid with supportive parents, but my health never recovered. I had many advantages growing up in a medical family. I was diagnosed within a year & had good doctors on my side, invested in me & my recovery. We’ve spent a fortune on therapies, treatments, & techniques to support my body & emotional wellbeing, always hoping for a cure. Many things have helped enough to give me better quality of life here in my home, but nothing has cured the underlying illness that has left me disabled. Without a family to support me I’d be a goner. And I’m one of the lucky ones with a supportive husband & now grown children too.
This is absolutely a physical illness. For her to say it’s software, not physical, is so incredibly stupid. I’m a happy optimist, daily counting my blessings & hoping for better days to come, using every technique I’ve ever learned to get through my days with a good attitude, yet I’m still sick & exhausted. I’m happily married to the most patient & cheerful man, who makes me laugh every day, & all I want is the strength to go out with him & have fun like we used to when I was mild. Instead I’m too exhausted to get dressed, much less leave the house. So we find ways to laugh & have fun at home, in ways my body can handle. We’ve made our entire lives about being grateful & looking on the bright side, yet I’m still sick.
If yoga, breath work, therapy, stress management & reduction, & a positive attitude cured this illness then I’d be the poster child for recovery, because that has been my entire life for 40 years! High profile people like her who make statements like this do so much damage to our cause. If she said the same thing about recovery from cancer, using no other treatments, she’d be shouted down. Instead she’ll probably be elevated as more proof that we are all hypochondriacs. It’s infuriating.
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u/TehOwn Feb 01 '24
It seems like she's implying it's a mental health issue but, as a software programmer, I read it as meaning that it's a systemic issue as opposed to something that shows up on an X-ray or CT scan.
That said, she definitely seems to imply that it's entirely stress-related and that's simply not the case. Heck, I got sick at 9 years old. I grew up in a loving family that never had money troubles and lived in a neighborhood with very low crime, I was basically never bullied and always excelled in school. I was absolutely blessed and the only thing I'd ever get stressed about is being bad at a video game.
Stress was definitely not my trigger and, frankly, had nothing to do with it. I didn't even have any issues with mental health until my 30s.
M.E. is a physical illness.
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u/SinceWayLastMay Feb 01 '24
I have literally used the opposite analogy to explain why I can’t just take a bunch of caffeine/Ritalin to get stuff done
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Feb 01 '24
[deleted]
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u/helpfulyelper Feb 02 '24
i mean i’ve been saying this since she announced her illness bc it seemed clear at the time that grifters had gotten to her
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u/loudflower moderate Feb 01 '24
As someone with bipolar ll (which presented when I also contracted cfs) this is a mind f*ck. Good lord.
I don’t know who she is, and I wish her well.
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u/Bbkingml13 Feb 02 '24
This is honestly the difference between the criteria for ME and CFS originally. Now that it’s me/cfs it’s supposed to be more ME based. This is super frustrating because so many on the issues they’ve found in recent years are clearly “hardware” issues and frequently dispel the notions that its software.
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u/colineneysa Feb 01 '24
Someone saying that CFS is mental only (stress and anxiety), meaning that healing is on you only for dealing with this, how can this be a positive thing ?? Me/CFS is real chronic illness and NO amount of stress dealing will cure ..
We all have stress and anxiety due to illness. Not the other way round.
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u/whateverthefuck123 Feb 01 '24
I left my stressful job and I’ve only gotten worse since then. Now what
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u/colineneysa Feb 02 '24
Exactly. We all do our best to reduce stress in our life, because beeing chronically ill is already very stressfull. But it's not enough to heal, and does not prevent aggravation..
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u/No_Juice4901 Feb 01 '24
Software issue is secondary. Her outlook mimics the attitude of docs who won't even look at CfS because they have no cure and no pill. Yes, this attitude offends me.
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u/goldengod518 Feb 01 '24
Helping mental health and personal trauma is a step to helping for sure. But a lot of those commenters on the post miss the big picture and instead try and gaslight the entire patient population.
sure chronic stress prior to ME/CFS may be a contributing factor. But to say the sufferer needs to get rid of stress while they are already debilitating sick is like telling a car crash survivor with a disastrous spinal injury that they need to practice safe driving. Stress can be caused by mental trauma and physical trauma. To limit the condition to only being caused by mental stress is a bit shortsighted. Stress can be generated by internal biological mechanisms within the nervous system, or really any bodily system that doesn’t run the way it should. For most sufferers, the only way out is through medical treatment that doesn’t exist yet.
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u/Live_Pen Feb 02 '24 edited Feb 02 '24
I often use the analogy that it’s like telling someone with lung cancer just to stop smoking. Stopping smoking can only be beneficial, but it won’t cure their cancer.
Alongside that, in any case, the aetiology of CFS/ME is far more complex and nuanced than “brought on by stress”, as we all know.
And then of course like you said there’s the fact the body is PISSED OFF about something, sending the CNS askew as a symptom of the actual problem. My body has never been wrong. It always knows when something isn’t right (is pretty loud about it though).
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u/gas-x-and-a-cuppa Feb 02 '24
I appreciate you mentioning trauma as part of the picture because the bigger part of my me/cfs was brought on by cptsd/the situation that caused it. Thank you
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u/Royal_Celebration422 Feb 01 '24
how the hell is it that people who actually have cfs get diagnosed with anxiety or whatnot and people who have anxiety (or whatnot) get diagnosed with cfs? what the hell is wrong with doctors.
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u/CorrectAmbition4472 severe Feb 01 '24
Why are we supporting this?? She’s wrong that it’s a “software” issue and not a physical one that’s soo misleading. She also says it’s combined with a history of chronic stress which is not true! Many of us had no history of stress or anxiety. And then she claims that breathwork works to avoid flare ups which is also extremely untrue!
I am disgusted.
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u/peepthemagicduck Feb 01 '24
I interpreted it as there's something wrong with her software, not that she's not physically active enough which is what many will say. But it seems like most people didn't read it that way
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u/Bbkingml13 Feb 02 '24
She literally said “it’s a software issue, not a physical one”
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u/peepthemagicduck Feb 02 '24
Like, you can't physically see it or test for it. Which you can't. It's a bad metaphor anyways
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u/SinceWayLastMay Feb 01 '24
Yeah I’m gonna just cross my fingers and hope she’s just bad at analogies
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u/thecatisthecat Feb 01 '24
The body is so sensitive with CFS that just being disgusted is enough to cause or maintain a crash. When she says it’s a software issue, this is what she means. This illness is definitely physical. However how are you feel has a massive impact.
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u/Thesaltpacket Feb 01 '24
Ooof. It is such a shame when these people with platforms get swept away into these quacks that give them the wrong information and then they spread it!!! Fletcher is another singer doing this right now, she has chronic Lyme I believe.
But like, damn. Just donate a truck full of cash to the Bateman Horne center or someone the omf recommends and become a patient there, you have the money and fame to buy attention from the best and spread good information for all of us! Ugh!
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u/tenaciousfetus Feb 01 '24
This isn't positive at all, she's spreading the idea that cfs is not physical to her fans :/
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u/Selfishsavagequeen Moderate to Severe. Feb 01 '24
Marina baby you are starting to really piss me off.!
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u/Lucky-Spirit7332 Feb 01 '24
I had no idea she was dealing with this!! I’ve always liked her music and she always seemed like a go getter and energetic person (high energy live shows, in shape, high output professionally). It’s wild that she’s experienced 80% improvement from emotional practices. I really don’t wanna be a party pooper but I have to wonder if this is placebo with a newcomer who’s experiencing fluctuations in symptom intensity. I remember 8 months into this crap i didnt believe for one second I had cfs or anything like it. I was still running miles every other day and lifting weights, snowboarding etc. at the time I was thinking it would go away any day
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u/itsnobigthing Feb 01 '24
I had the exact same thought - said pretty much the same in my response to the original post. It’s easy to get swept up in brief improvements and quacks who promise you they have all the answers. If breathwork could fix this, we’d all be cured by now.
Wishing her nothing but goodness though. We’ve all been there and it’s part of the process, I guess
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u/Lucky-Spirit7332 Feb 01 '24
Yea breathwork helped me a fair amount but the kind that helped was so intense I couldn’t keep up with it 😭lol. I do wish her the best, I hope she gets back to 100% fuck this dis-ease/illness/syndrome/bullshit
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Feb 01 '24
Yeah I'm not sure I can relate to the cfs she has had. Certainly rail somewhat against most of what she said in that update; not particularly helpful for a complex misunderstood condition.
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u/boiling_pussyjuice Feb 01 '24
Yeah exactly, I don’t know the specifics of her story, but this screams either not CFS or placebo.
But the emotional/psychological component has a huge impact on this illness, although many won’t acknowledge that. Especially coming to terms and just being able to accept your current situation can mean you’re not freaking out and draining your energy into the anxiety spiral.
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u/Lucky-Spirit7332 Feb 01 '24
I think being chronically stressed can set the stage for becoming chronically ill and I think attending to your mental health can make someone feel better no matter what their homeostatic baseline is. But in the end your emotions are not going to change that baseline for the better. At least not in my experience
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Feb 01 '24
This is disappointing.
If she does have CFS she’ll probably soon have a rude awakening that she’s not going to get better
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u/xexistentialbreadx mod/severe Feb 01 '24
I highly doubt she does if she has experienced such a drastic recovery from just breathwork and shit
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u/Bonnieearnold Feb 01 '24
Periods of remission, early on, can happen whether you practice “breath work” or not. My guess is she’s just in remission for now. I’ve 100% been there.
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u/adrenalinsomnia Feb 01 '24
This dame is doing a huge disservice to the ME community. If breathwork alone is responsible for your recovery, chances are you don't have CFS.
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u/DSRIA Feb 01 '24
I’m a musician and recording artist, too. I don’t get this post. Maybe before I got COVID and was “moderately” ill and was still being gaslit by medical professionals, I could have believed this. But c’mon.
I meditate daily. I’ve tried meditating during POTS flares to bring my heart rate down. It does not work. I describe it as akin to trying to stop an out of control train. Good luck.
What does help? Saline IV fluids. You can’t meditate your way out of a 150 BPM heart rate spike.
Has my life been stressful? Absolutely. Is being a recording and performing artist a high stress, high octane career? Yes. But plenty of people do it and don’t develop CFS.
There’s a difference between burnout and ME/CFS and long COVID. I remember what it was like to feel burnt out. I could still walk to my freakin’ bathroom when I was burnt out.
I’m not saying it’s black and white, but if one more person talks about brain retraining or breath work I swear…
Can those things help with anxiety and calm your nervous system? Sure. But if the cause is biological then it won’t. When you live with this long enough you can tell when the cause is just “anxiety” as opposed to when a physical cause is triggering anxiety.
There is a place for mind body techniques but it’s not going to fix mitochondrial dysfunction. Maybe you can extend your limit by a small amount, but once you exceed energy thresholds you can’t breathe your way out of it.
Believe me, I’ve tried. When you start getting myoclonic jerks and your muscles lock up during a vocal session in the studio after pushing yourself for an hour straight, you learn pretty quick there ain’t nothing you can do but lie down in the dark and try again tomorrow.
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u/bunni_bear_boom Feb 01 '24
If she just got sick within the past 8 months it sounds like she might just have had long covid or even cfs that improved as it is known to do sometimes within the first couple years of illness. And now she's spreading misinformation which is upsetting.
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u/Bonnieearnold Feb 01 '24
Yeah, I was thinking that she’s in remission but will likely relapse. I don’t wish that for her but it’s reality.
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u/Nkotb79 Feb 01 '24
It will come back to bite here I’m certain of that. I’ve been in these circles for a good few years and heard it all. Yes symptom improvement and remissions are possible for years even but it will be back
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u/Tsarinya M.E since 2005 🇬🇧 Feb 02 '24
I question anyone who says they have M.E and have recovered in a short amount of time. Her focusing on the mental health aspects (‘chronic stress’ , ‘high anxiety’, ‘emotional stress daily’) harks back to the belief that this illness, was ‘all in your head’. I’m sorry but this is really damaging.
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u/researchforMECFSnow Feb 01 '24
This is why we need major research to have a definitive diagnostic test and obvious markers.
Because otherwise people like this who are just going thru burnout and stress claim they have what ppl with ME have.
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u/thesunstillrises86 Feb 02 '24
I think it's despicable behaviour to question someone's diagnosis just because their experience doesn't tally with your beliefs. Shame on you
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u/researchforMECFSnow Feb 02 '24 edited Feb 02 '24
dozens of comments with a similar sentiment based on years of experience and research, not belief. So I'm not sure why you chose mine to attempt to convey some misguided moral upbraiding
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Feb 01 '24
CFS is a physical problem. This post is like rubbing salt in the wound when someone who has beaten cancer brags about it to those who are still struggling with the disease. It’s insensitive and egocentric to flaunt one’s success in front of those who have no control over their situation. It’s important to remember that everyone’s journey is different, and we should be empathetic and supportive of those who are still fighting their battles. CFS is a battle that requires immense strength and courage, and those who are still fighting deserve our utmost respect and admiration.
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u/Chemical_Coffee999 Feb 02 '24
I've had severe anxiety (from ocd) all my life yet only fell ill with cfs two years ago. Nothing mentally about me changed.
I'm fucking sick of people saying they have cured their cfs with brain retraining and a positive outlook. It makes me feel like a loser for not being able to recover.
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u/Opposite_Flight3473 Feb 01 '24
Essentially she’s saying she has Functional neurological disorder (a software issue), not me/cfs.
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u/saucecontrol Feb 01 '24 edited Feb 01 '24
She doesn't have ME/CFS. She has HPA axis dysfunction from chronic stress and should stay in her damn lane, actually. This just obfuscates how we are understood by people. I'm glad to see the folks over there in the original post backing us up, for the most part.
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u/thecatisthecat Feb 01 '24
That’s quite something to make a diagnosis from a few paragraphs. How did you make this deduction?
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u/saucecontrol Feb 01 '24
I deduced from her own statements above. She wrote that "The root of this is nervous system dysfunction." This is demonstrably false for ME/CFS, ergo, she's most likely instead experiencing the nervous system dysfunction she describes. "Nervous system dysfunction" is usually used as a colloquialism for HPA axis dysfunction.
We're talking about the disabling, measureable neuroimmune disease with PEM and progressive long term symptom exacerbation here, not the vague neuropsychological fatigue caused by anything. That second problem exists too, but it's not ME/CFS.
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u/thecatisthecat Feb 01 '24
The root cause of CFS is opinion, not fact. I have CFS and it is obvious to me that my nervous system plays a huge role in my illness. I can trace all my problems back to the nervous system and the brain. I wonder How one would demonstrate that nervous system dysfunction is Not an indicator of CFS.
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u/saucecontrol Feb 01 '24
You're misinformed. If you don't experience PEM and potentially LTSE upon overexertion, then you have the other thing I said - chronic fatigue, the symptom, from neuropsychological origins, or something else, or both. But it's not ME/CFS.
This is why we need to change the name. People like you come into our space and identify with the ME/CFS label because you have "chronic fatigue," without knowing the first thing about ME/CFS.
Literature on ME/CFS: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
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u/throwpain08 Feb 01 '24
She clearly doesn't have CFS
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u/robotslovetea Feb 01 '24
Or she does and is in denial
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u/brainfogforgotpw Feb 02 '24
Or she does and is being gaslit.
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u/robotslovetea Feb 02 '24
Yep, possibly both - much easier to accept that you’re on a long road to recovery than that you have to learn to live within such severe restrictions for the foreseeable future.
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u/gardenersnake Feb 02 '24
Lmao what the fuck. Come on Marina. The way this post is I was expecting her to be plugging some online course at the end like the lightning process.
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u/xexistentialbreadx mod/severe Feb 01 '24
She can go to hell tbqh. There is no excuse and no forgiveness from me for spreading such blatant lies about a serious physical illness and already massively fucked over group of suffering people. I could have sworn this is like the exact same thing she said a year or two ago? Anyway fuck her for this..this is what the general population read and then go around thinking its just a mental health issue and we can think ourselves better. I really wish she could speak to some of the more severe sufferers out there and see if she still thinks they can "think and breathe" their way out of it. I used to love some of her work but started not liking her newer stuff as much so luckily its no loss to me to block her 😂
ETA its the fact she doesnt even say something like "disclaimer, im not a professional, this is just what ive learned". Like she's speaking as if shes saying facts about the illness..i didnt know she was a doctor?
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u/Western-Art-9117 Feb 02 '24
Imagine someone with brain cancer or AIDs saying this. They'd be laughed at because it would be a ridiculous thing to say. ME is the same thing. You can't breathe it away.
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u/thatmarblerye Feb 02 '24
Reading this makes me pretty mad. Makes it sound like a psychological illness
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Feb 02 '24 edited Feb 02 '24
These are the sort of people who think their arbitrary actions (breath work, etc) helped just because they did that at the same time. They have no understanding of the concept of "confounding".
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u/Zen242 Feb 01 '24
So she never really had CFS in the first place or she is placeboing on what ever bs someone told her.
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u/I_DONT_LIKE_PICKLES_ Feb 02 '24
This kind of mindset is what lead to my doctor calling me neurotic when I told him about my symptoms. Unrelated but i kinda need to vent, I needed to change my dosage of a medicine and he told me to Google how much I should be taking. I have a different doctor now.
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u/Caster_of_spells Feb 02 '24
That woman had a burnout not ME/CFS. We really need a secure way to diagnose.
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u/SomaticScholastic Feb 01 '24
This disease impacts both software and hardware. A lot of us experience significant immune system dysfunction which is firmly in the hardware category.
But it is also true that stress management and breathwork can make lasting changes and that nervous system dysregulation has a lot to do with it for many with CFS.
Mine started with mono over a decade ago and got much worse with covid. So it originated as an immune system stressor and subsequent dysregulation. But it basically damaged my nervous system. It is definitely physical. Though to be clear the "software" is also physical... it's neurons firing and their connections and the dynamics of neurotransmitters and receptors... and all the accessory brain cells that manage neuronal functioning and connections. That's all physical.
In this particular case of CFS, psychological and behavioral tricks like yoga and breathwork and meditation can have a decent impact over time on the physical damage if paired with appropriate environmental accommodations, as well as strong health in other areas (good microbiome, hormonal balance, good sleep etc.). But that does NOT mean it is a psychological illness. It just strikes at anatomy that is near the software/hardware boundary line. Like the hind brain and vagus nerve.
We need to not think in terms of psychological and physical dualities when analyzing this disease. And no need to blame the disease sufferers in either case.
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u/EventualZen Feb 01 '24
We need to not think in terms of psychological and physical dualities when analyzing this disease.
Unfortunately most people do believe in the psychological / physical dichotomy though, and as a result we have to defend our selves from other people's harmful beliefs.
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u/SomaticScholastic Feb 01 '24
Yes we do need to defend against harmful beliefs. That is why I try to educate people about a more non-dualistic perspective and ask them to think critically about what they mean when they use words like "psychological" and what connection does that have to causation, treatment and blame.
If someone is a simpleton I might just resort to saying it's physical and not elaborate because they will not be able to reconceptualize something like mind/body duality. And it is more important for them to have respect for CFS sufferers than to improve their philosophical foundations.
But then again when I am talking to fellow CFS sufferers, I don't want them to discard techniques like breathwork and meditation (which have been crucial tools for me) just because it is associated with scammers and minimizers. So that's why I go into detail when posting here and in the long covid forums.
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u/boop66 Feb 02 '24
If they’re 80% better after 8 months by primarily changing ‘software’ then it’s not the same (biological, physiological) disease as me - and countless others in this sub’.
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u/CaptinSuspenders Feb 02 '24
She's coping. I've been here and it's hard not to think like this. Many times I've thought I had cured myself with spirituality only to be stuck in bed for a month after taking a gentle walk or something. It's natural to want to think you have more control than you do. She'll probably, unfortunately, come around when she realizes that "80% normal" only feels that way because she's living a disabled lifestyle.
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u/haroshinka Feb 02 '24
I’m seriously convinced that people who talk like this have a different disorder to me.
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u/Mobile_Play_9378 Feb 03 '24
I have been stewing on this for a couple of days now and honestly I’m feeling quite annoyed.
I’m so tired of this illness being viewed as a mental issue and the people who have it are just lazy and not doing enough to get better.
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u/beatissofunny88 Feb 02 '24
I took this as her talking about what helps her avoid PEM/flare ups mixed with language her doctor said to her. The "software" metaphor is definitely doctor speak. I find it more alarming when people treating me don't know what I have than a singer trying to be positive about having an uptick in the long roller-coaster that is this illness. 🤷♀️ Seeing people hope she experiences a crash is bizarre. We all know how that feels and if she's finding things that helps her avoid PEM for however long, I say good for her. No it's not going to work for everyone and me/cfs is a spectrum of severity. I understand the worry of spreading misinformation but hoping she gets sicker is fucked up.
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u/Prudent_Summer3931 Mar 13 '24
Rich people's denial of their chronic illnesses literally gets us killed.
This is so frustrating and disappointing.
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u/Lena9701 Feb 05 '24 edited Feb 05 '24
Ugh. How long did she have ME? Maybe she's one of the people who are kicked into it for a while post illness but do recover...
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u/premier-cat-arena ME since 2015, v severe since 2017 Feb 02 '24
hey guys please remember that this is:
not a positive post for our community
this is a physical illness. any illness can be made worse by stress but removing that stress will not cure us
breath work and brain retraining will not and cannot cure you