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Eirik | Severe ME/CFS

@eirik_ax

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Bedbound, year 12 🛏️
Life in pioneering ME/CFS care 🇳🇴
Dark humour, grief & advocacy 🎭

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Ich möchte mich herzlich bedanken, für das Vertrauen in das neue Filmprojekt "Labyrinth". Ich danke Euch, dass Ihr Eure Geschichten erzählt:

Chrissie, Talia, Pascal, Eirik, Sabine mit ihren Kindern Mathilda & Annabelle, Ella mit Jano, Heike S, Matthias & Judith werden wir auch noch mal wiedersehen und mich dann auch.

Ich weiss unter welchen extrem schwierigen Bedingungen, Eure Clips entstehen. Ich sage Euch, nicht nur eine Träne habe ich bisher vergossen. Ich danke Euch, für Eure Mühe, hier mitzuwirken, und das teilweise unter lebensbedrohlichen Bedingungen.

Dann gilt mein weiterer Dank, an jene die Fotos, auch Clips geschickt haben, sogar aus Japan, mein Dank auch an Ronja, Heike M, Angie, Carolyn, Manu, Lidia, Hanna u.v.a.

Für jene, die noch nichts geschickt haben, ihr könnt noch weitere Fotos schicken, - bitte an: labyrinth@filmgalerie451.de - diese werden wir für Collagen dann einsetzen, um deutlich zu machen, dass wir viele sind. Noch sind wir mittendrinnen im Prozess, können noch nicht abschätzen, wann es in die finale Phase geht. Aber ich wollte ein paar Worte sagen:

ICH DANKE EUCH!

I would like to express my heartfelt thanks for the trust placed in the new film project, "Labyrinth." Thank you for sharing your stories:

We will see/hear Chrissie, Talia, Pascal, Eirik, Sabine with her children Mathilda & Annabelle, Ella with Jano, Heike S, and Matthias & Judith again & me too, then.

I am aware of the extremely difficult conditions under which your clips are being created. I can tell you that I have shed more than a few tears so far. Thank you for your efforts in participating - sometimes under life-threatening conditions.

I also want to thank those who sent photos & clips - even from as far away as Japan. My thanks go to Ronja, Heike M, Angie, Carolyn, Manu, Lidia, Hanna, and many others.

For those who haven't sent anything yet: you can still send more photos - please email them to labyrinth@filmgalerie451.de. We will likely use them for collages to show that there are many of us. We are still in the midst of the work process, I can't yet say when we'll reach the final phase, it will take some time, but I wanted to say a few words:

THANK YOU!

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CLC MEMBER FEATURE: I’m Eirik (eirik_ax), I’m 39 and I grew up surrounded by the beautiful nature of Hardanger, Norway.

Before illness took over, I studied music. I’ve loved music and played guitar since my childhood. Because of ME/CFS and injuries, I can no longer play. For years I couldn’t even tolerate listening to music, so hearing some again now means a lot.

My main diagnosis is severe ME/CFS. Unlike many, my onset wasn’t acute. Looking back, I think I had a mild, undiagnosed form since my teenage years. I did well at school, but had much less energy for life outside than my peers. Without knowing why, I instinctively learned to conserve energy. When I pushed those limits, my health deteriorated dramatically. With ME/CFS, pushing through can be dangerous.

ME/CFS is a multisystem disease affecting energy metabolism, the immune and nervous systems, and exertion tolerance. To me, “fatigue” is deeply misleading. I don’t just feel tired; I feel profoundly ill. In its most severe form, ME can make the body intolerant to life itself: physical activity, thinking, sensory input and human interaction. At my worst, I couldn’t even move my fingers. Existing was enough.

Today, I can use my phone and speak again, but I’m still bedbound 24/7. I have a PEG feeding tube and haven’t eaten food for seven years. I also have cervical instability & related comorbidities, which might be related to my ME.

Illness has taken away my freedom. I miss a shower & coffee in the morning, seeing family and friends, and not needing care for basic things. My girlfriend is also severely ill. We can’t live together, but we stay in touch every day.

I now live at Røysumtunet, probably the world’s first specialised care unit for severe ME/CFS. The disease is still stigmatised, and many patients struggle to receive care. After years of fighting, I’m grateful to finally be believed & cared for. My dream is for everyone with ME/CFS to receive dignified care, and for more research into therapies.

My advice for everybody would be to listen to your body, even when everyone (including yourself) wants you to keep going. With ME/CFS, it’s not the pushing that’s hard. It’s the holding back.

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today is myalgic encephalomyelitis (ME) awareness day - a day to uplift our experiences, listen to us, advocate for us, and campaign for change.

but this should be happening every day, because ME is continuing to ruin millions of people's lives. yet it remains one of the most underfunded & understudied diseases despite 1 in 4 people with ME being severe - completely bedbound and reliant on 24/7 care.

💭 in this post, i talk about what ME is and what you can do to support us. if this is your first time hearing about this disease, or you want to know more, please learn from the charities & research centres on slide 14 and creators that i have tagged on slide 15!

sending so much love to everyone with ME today or to people with a loved one with ME. living with this disease is so difficult & we deserve to be heard. 💙

(all info in this post is from the mentioned organisations & the NHS!)

——
#MECFS #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #ChronicIllness me/cfs, ME, chronic fatigue syndrome, chronic condition, ME awareness day

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May 12 marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of ME/CFS. Here are some of their responses.

Visit the link in bio to join us in raising awareness.

#MECFSAwareness #EndMECFS

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Let’s make the invisible, visible. 💙

ME/CFS is a life-altering illness with no approved treatments and no clear roadmap. For the millions living with it, and those who care for them, uncertainty shapes daily life in many ways.

This May, we’re focusing on the questions we carry as a way to share what it means to live with this condition.

Through #MECFSis, our community is turning an invisible struggle into the momentum we need to drive research forward and find the answers this community deserves.

Thank you to everyone who’s shared so far. Your voice helps make ME/CFS harder to ignore. 💙

#MECFSis #MECFSAwareness #MECFS

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12 May marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Here are some of their responses.

Visit omfaustralia.ngo to join us in raising awareness.

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In honor of the ME-awareness month, I want to share some accounts that I think are doing a great job 💙💙

There’s many amazing accounts out there that I look up to, thank you to everyone who raises awareness and makes us all more visible 🫶🏻

♡

#chronicillnessawareness #millionsmissing #myalgicencephalomyelitis #meawareness #meawarenessmonth

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Halloween and autumn/fall looks/outfits/costumes - chronically ill and disabled edition ❤️❤️

Thank you to everyone in this video for being a part of it! What can I say we all look amazing 💅🏼. Love this community 🧡

Big love to everyone who has been too sick to do anything to mark Halloween this year, especially friends with severe and very severe ME 🫂. Love you always.

Tags in order of appearance:

@alilbitofaith
@franhaddock_
@practising_imperfect_with_lc
@emilyeff
@chronic_illness_and_me
@chronically.theo
@captain.shyborg
@sistacreativesrising & @amaranthiasepiaartworks
@oliver__niko
@amykatherrrine
@rana2.0
@eirik_ax
@melinda_is_done
@subluxatingskye
@therealchronicillnesscrafter
@mx.syd
@its_whitney_witch
@blezzingdada
@imsarahsalt
@kays_chronicls
@loreoflala
@sweet_villal_panda
@sofiinak
@franhaddock_
@disableddee
@merivellamo
@spoonfuloflindsay
@alilbitofaith and @chronicallyc
@wildflowersandfog
@rachel_curtzonmusic
@annierayee
@jjchapeaux
@queercrone
@mandala.nurse
@chronic.craft.club
@yoshinoyame
@lisa.was.here007
@myskaria
@marketadoesntexist
@katie_andm.e
@franhaddock_
@stephaniestott.uk
@art.by.a.pear
@_the_frog_queen_

Tags: Halloween, fancy dress, chronically iconic, spoonie, ME/CFS, wheelchair user, mobility aid, long Covid, wear a mask, outfit of the day,

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How do you fight for visibility when you’re too sick to leave your bed?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a debilitating, complex disease that affects millions, often leaving people housebound or bedridden for years with no end in sight. And yet, it remains one of the most underfunded and misunderstood illnesses today.

This May, individuals around the world used their limited energy to share powerful messages, completing the sentence “ME/CFS is…” Their voices reveal the reality of living with this disease—the challenges, the losses, and the urgent need for change. From mild to severe ME, every experience is valid.

Huge thank you to everyone who has submitted and shared their story so far! We see you. And if you haven’t had the energy yet — that’s okay. We’ll be sharing submissions all month long.

You’re not alone. Your story matters. Let’s make ME/CFS visible, together. 💙

Explore all submissions on our website: link in bio or visit https://www.omf.ngo/community-voices-me-cfs-is/

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Another #MECFSawarenessday is here, and we still have zero cures/treatments. If you are able, please donate to @openmedf and read more of the stories shared this month, especially by those in Very Severe conditions — the #MillionsMissing. I’m “fortunate” I’m more of a “mild” case these days, which allows me to leave the house, do research work, and see friends in-person. But there are still often times I experience the overstimulation of bright fluorescent lighting, guaranteed PEM from crying, & that horrible crashy state. And that awful sinking reminder that I can’t run or exercise.

This post cannot even begin to touch on the realities of what it’s like to live with M.E., and I hope this mini primer serves as a useful educational piece for those new to learning about #myalgicencephalomyelitis, or maybe even a validating tool to show disbelieving friends, family, & colleagues.

Tens of millions already had M.E. pre-pandemic, and this number will only continue to grow with unmitigated transmission of COVID. Please do your part in this harm reduction 😷

#mecfs #MEawarenessday #longcovid #openmedf #meaction #GoBlueforMECFS

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Vi feirer julaften sammen i tankene👫🐱❤️en dag skal vi få slippe ut av mørket, og være sammen på julaften med mennesker vi er glade i🎄

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Savner han her litt ekstra i dag👫🇳🇴Han som gjør hver eneste dag så mye bedre❤️Den fineste, sterkeste og godeste jeg vet om🦸‍♂️💪🏼❤️

Tenk så magisk at jeg får oppleve å ha en kjæreste selv om jeg er så syk. Det trodde jeg aldri at jeg skulle få oppleve

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