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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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ME/CFS is not “just fatigue”. For many of us, it is life-altering disability.

It can take away work, freedom, identity, friendships, family life, independence, and the future you thought you had.

Many patients are housebound or bedbound. Many are hidden away. Many are left without proper care. Families are forced to become healthcare systems.

Long Covid has made this crisis even more urgent: many now live with ME/CFS-like symptoms, including post-exertional malaise and severe loss of function.

Still, ME/CFS remains severely underfunded, misunderstood, and stigmatized.

These are the questions I wish more people would ask.

Please swipe, read, share — and help make severe ME/CFS visible.

#MECFSis #MECFSAwareness #SevereME #LongCovid #millionsmissing by @eirik_ax

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5 months ago

🟦 Severe ME Awareness Day – August 8th

To mark the day, I'm sharing clips from my first year bedridden in a nursing home (2014), and from my gradual recovery until 2017. Then everything collapsed again in 2018. I'm still in bed today.

🌀 My own and others’ experiences convince me that ME can be reversed – likely in different ways.

⚠️ But without a cure, the risk of relapse is always there.
I’ve collapsed, relearned how to walk – and collapsed again.
I know recovery is possible. But many push too hard during recovery – and crash.

ME is unpredictable.

💠 Around 25% of people with ME are severely or very severely affected – often housebound or bedridden 24/7.

🗓️ August 8th is the international awareness day for these patients, chosen because Sophie Mirza died from ME on this date in 2005.

🧩 The line between "mild", "moderate", and "severe/very severe" ME is blurry. Even milder forms can be deeply disabling, and many fluctuate over time.

🚨 The most severely affected face serious risks and mistreatment:
▪️ Involuntary psychiatric hospitalization
▪️ Mistreatment in nursing homes – sometimes fatal
▪️ Forced, unproven therapies from welfare systems
▪️ Children removed by child services on false grounds
▪️ Denied access to doctors and medical care
▪️ Too ill for hospital treatment
▪️ Loss of benefits and essential care
▪️ Left alone for years – relatives burn out
▪️ Evicted – sometimes fatally (e.g. in the US)
▪️ Disbelieved or harassed by professionals or family
▪️ Symbolic violence and social stigma
▪️ Some end their lives – not wanting death, but desperate relief from suffering

💔 It’s alarming that assisted dying is expanding, while welfare and care are being cut.

✨ Still, there are new promising advances in ME research – biomarkers, genetics, disease mechanisms, and potential treatments.

It’s worth holding on a little longer.

#severemeday #millionsmissing #medicalneglect #verysevereme #mecfs #myalgicencephalomyelitis by @eirik_ax

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a year ago

5 kjappe spørsmål fra senga

Min bror er stuntreporter og gir et eksklusivt intervju direkte inne fra rommet mitt. Egner seg best for den som vet lite fra før - det vil si de fleste.

English translation of the spoken Norwegian:

Q: How long have you been severely ill with ME?

About 12 years.

Q: How much of the day do you spend lying down?

All day. I cannot sit upright and I need help with everything in bed.

Q: How do you get nutrition?

Through a feeding tube into my stomach. I have not eaten real food for 6 years.

Q: What is the hardest part of being bedbound?

The loss of freedom — and being dependent on others for everything.

Q: What do you wish people understood about ME?

That it is a serious illness. It can affect anyone. It is not about lack of willpower.

#alvorligme
#sengeliggende
#5kjappe
#eksklusivt
#norge by @eirik_ax

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3 months ago

English summary below ↓

Dette klippet er fra en uvanlig god dag i august.

Jeg ligger på båre, men jeg kan snakke sammenhengende, tåle å være utendørs og være med på et kort videoklipp.

Til vanlig er jeg sengeliggende i et dunkelt rom hele døgnet. Jeg har ikke kunnet sitte eller snu meg selv i senga siden 2018, og er avhengig av omfattende hjelp og pleie. På dårlige dager klarer jeg ikke å motta hjelp engang.

På mitt aller sykeste kunne jeg bare hviske korte setninger, klarte ikke bruke mobil og måtte ligge totalt skjermet. Jeg tålte ikke at andre oppholdt seg i rommet, selv om de var helt stille og de måtte.

Det sier også noe om hvorfor de aller sykeste ME-pasientene er så lite synlige. Jo mindre kroppen tåler, desto vanskeligere blir det å filme, bli intervjuet, skrive innlegg eller på andre måter vise verden hvordan livet faktisk ser ut.

Derfor kan mange få et unyanset bilde av alvoret. De pasientene man ser, er de som har mest kapasitet til å bli sett. Mangel på bilder og video fra de sykeste periodene, gjør at de mest ekstreme utslagene av sykdommen forblir skjult. Ute av syn, ute av sinn.

Det du ser her, er altså et sjeldent unntak i hverdagen min, ikke en representativt for hvordan en vanlig dag ser ut.

English summary

This was one of my best days with Very Severe ME/CFS. I’m able to speak, tolerate some daylight and be filmed for a few minutes, but that isn’t representative of my everyday life.

I’m bedbound 24/7 and dependent on care. At my sickest, I could barely speak and couldn’t use a phone.

This is also part of why the most severely affected ME patients are so rarely seen: the less you can tolerate, the harder it becomes to film, speak publicly or document what your life actually looks like.

What makes it onto camera is often the exception, not the everyday reality.

#millionsmissing
#pasient
#mesyk
#mecfsfighter
#outofsightoutofmind by @eirik_ax

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6 days ago

Dette er venninna mi Kamilla. Hun er svært alvorlig ME-syk, og 15. oktober skal hun flyttes fra spesialisert ME-pleie tilbake til bydelen.

Situasjonen hennes er nå kritisk, etter at Oslo kommune har valgt å overkjøre medisinske råd.

Saken haster. Del gjerne videre.

#pasient #pasientsikkerhet #bpaordning #myalgiskencefalopati #helse @oslo.kommune @jcvestre @kjerstitoppe @erlendsvardalboe @vasvik78 @seheraydar @mimirkristjansson @mariuslangballe6789 @kathylie @idalindtveitrose @dagsavisen @klassekampenas @tv2nyheter @helsedirektoratet by @eirik_ax

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8 days ago

I recorded this in June 2017. After years of severe ME/CFS, including being completely bedbound and dependent on care, I was self-sufficient again. I could walk, train and travel to Sandane for specialised neck rehabilitation. I was still ill, but living something close to a normal life.

I already had neck problems, but the major injury happened in 2017 while my ME was improving, making it very unlikely to explain the ME itself, although it has clearly added to my disability.

🇳🇴 Lengre norsk versjon på Facebook-siden min.

In the video, I talk about something I was genuinely afraid of: becoming severely ill again. Having already lived through very severe ME, that fear was hardly irrational. It was a response to experience, not an explanation for what happened next.

The neck rehabilitation was successful and I became much stronger, but the ME never went away. Over time, my body couldn't tolerate the training load. By May 2018, less than a year later, I was severely ill and bedbound again.

The irony was hard to miss. The municipality had resisted supporting rehabilitation while I was well enough to benefit from it. After I collapsed, they rather absurdly wanted a full rehabilitation team to get me out of bed. In a severe ME crash, pushing rehabilitation can be dangerous and, in the most severe cases, potentially life-threatening.

Getting personal assistance back became another fight. I had previously had 24/7 BPA, Norway's user-controlled personal assistance scheme, and it had worked well with my brother managing it. I gave it up voluntarily when he left to study and I no longer needed the same level of help.

Yet in 2018 the municipality resisted giving it back and preferred a municipally run service. For severe ME, BPA can provide crucial continuity, predictability and control over care. We eventually needed a lawyer before I got it back in 2019.

ME/CFS is brutal enough in itself. For many patients, one of the worst parts is the resistance they meet from the systems that are supposed to be their safety net, precisely when they're least able to fight them.

#mecfs #severeme #verysevereme #patientrights #chronicillnessawareness by @eirik_ax

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23 days ago

4,602 days with M.E.

Still waiting for the 3-day cure to be effective.

#severemeday #severeme
#severemeawareness #bedridden
#advocacymatters

@meactnet @meforeningen by @eirik_ax

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2 months ago

I wasn’t healthy when this was filmed—just well enough to have a little independence and freedom. It was 2016, and I was sitting semi-reclined in the living room, talking to my mother.

Now, ten years later, I am once again completely bedbound with very severe ME/CFS. Sadly, far less progress has been made for people with ME than we had hoped. Many good people are working for us - but unfortunately, there are even more people working against us.

It is Severe ME Awareness Week, and I am sharing this clip from the archives to show just how devastatingly hard this illness can strike.

#severeme #mecfs #myalgicencephalomyelitis #bedbound #chronicillnes by @eirik_ax

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2 months ago

Jeg kom meg ikke ut, så vi slapp verden inn en liten stund....

MIN BROR PÅ SOMMERVISITT

(English summary in the first comment)

Det var litt kjølig denne dagen og tordenvær på ettermiddagen. Så istedet for å trille meg ut slik vi hadde planlagt, prøvde vi å åpne vinduer og dører på rommet mitt og slippe lyset inn i stedet. Det er godt å få et kort glimt av "vanlig verden". Jeg har vært på reis gjennom ME-universet i 12 år nå. Når vinduet ble åpnet, følte jeg meg som en astronat som tittet ut av romskipet og fikk et lite glimt av jorda.

Det er veldig spesielt å ligge isolert på det samme rommet hele døgnet, året rundt. Rett bak den ene døra mi er friheten og lyset, og bak den andre er fellesarealet og rommene til andre ME-syke. Men jeg kan ikke gå gjennom noen av dørene. Å trille meg ut er heller ingen enkel affære.

Når jeg er på mitt dårligste, tenker jeg ofte at jeg har lyst til å dokumentere bedre hvordan hverdagen min i mørket med ME er. Men det er ikke så enkelt å få til.

Å filme eller fotografere i mørket krever spesialutstyr og mye planlegging. I tillegg er det hensyn til personvern å ta når man bor på instutisjon.

Noe av hverdagen de alvorligst syke lever i, er dessuten så grusom at det føles for sårbart eller vondt å dele - for pasienten selv eller publikum. Andre ting lar seg ikke representere i SoMe på en rettferdig måte.

Det kan derfor bli misvisende når jeg dokumenter den ene gangen i året jeg er utendørs, eller en kort stund tar et bilde med normalt innelys. Jeg kan tåle det i noen få minutter, men det koster mye energi. Jeg kan faktisk bli sykere av for mye lys og andre stimuli.

For meg, som mange andre ME-syke, er den vanlige hverdagen og de dårlige stundene undereksponert i sosiale medier. Det går jo en grense for hvor mye folk flest orker å ta inn.

Og det går en grense for hvor mye lys jeg klarer å slippe inn også.

#dagslys #kronisksyk #meawareness #mesyk #hverdagsglimt by @eirik_ax

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3 months ago

Watch me play in bed with my kitten 🐱

#colorbjørn #catsofinstagram #zmeex #bobbobbob by @eirik_ax

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4 months ago

Jeg var på forsiden av VG i går for å fortelle min frisk-historie 😊 Ønsker alle en fin uke!

#lightningprocess #recoverynorge #myalgicencephalomyelitis #galgenhumor #autentisk by @eirik_ax

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6 months ago

This week a parcel turned up in the post – from England, it said. Had me scratching my head ‘cause I couldn’t remember ordering anything from there lately.

Proper surprise when I opened it and found a letter from my mate Mark. And inside – what a result – a Luton Town shirt and bedding. Buzzing, honestly. Proper generous, cheers so much Mark!

I’m not exactly a die-hard football supporter, but I do keep an eye on it. Luton ain’t what you’d call a big club, but like loads of people I got a bit taken in by them when they went up to the Premier League in 2023/24.

Their ground, Kenilworth Road, is right in the middle of a housing estate, with the away entrance tucked in between a row of houses. Doesn’t get more down to earth than that. Feels proper working-class, more than most clubs these days.

It’s mad really – going from non-league (level 5) back in 2009 all the way up to the top, and now back down in League One again. Proper yo-yo journey. Like a lot of us, Luton are having a tough time of it right now – but there’s always hope things will turn around.

Can’t say I’m a proper Luton lad like Mark, not even close, but I’m happy to spread the word about them over here in Norway. And to be fair, it’s nice having a bit of colour in my otherwise grey room.

Thinking of you, mate – hope things are heading the right way.

Come on you Hatters! 🧡

#coyh #ltfc #lutontown #newbedding by @eirik_ax

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7 months ago