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Chronic Fatigue Syndrome and Long Covid: A Life in the Dark

2022-10-02T10:01:43.166Z

Always lying down, hardly moving, only speaking for a few minutes at a time: Faraz Fallahi is seriously ill with ME/CFS. From his darkened room he fights for more research - and encourages other sufferers.



AreaRead the video transcript expand here

Faraz Fallahi, ME/CFS patient

»I've been lying here for two and a half years and every fiber of my body is screaming nature.

They describe themselves as the walking dead.

Sufferers of chronic fatigue syndrome, such as Faraz Fallahi.

Light and noise – all sensory stimuli can become torture.

Faraz Fallahi, ME/CFS patient

»I would just like to touch the meadow somehow somehow.

I'm on the go on social media and once wrote something there and I'm a bit known for the fact that I'd just like to touch a tree again or just look at a tree like that lying there.

And I can't do that because I can't get out because of the light.«

Myalgic encephalomyelitis or chronic fatigue syndrome, ME/CFS for short, determines Faraz's life - he has to be cared for around the clock.

Today his brother takes over.

Farzan Fallahi, brother of Faraz

"Hello, I would like to do your leg exercises with you."

The 39-year-old can't talk for more than 20-30 minutes at a time, the rest of the day is a mixture of sleep and twilight.

Even watching TV and listening to music is too exhausting - what remains is the smartphone to communicate with the outside world from time to time.

Since Faraz is awake right now, there's a short window for us to greet him.

Faraz Fallahi, ME/CFS patient

"

I could just say hello."

Farzan Fallahi, brother of Faraz

"Yes, then you can talk for three or four minutes."

Faraz Fallahi, ME/CFS patient

"

Hey, you all right?"

Birgit Großekathöfer, DER SPIEGEL

"Yes and with you?"

Faraz Fallahi, ME/CFS patient

“Yes, I took some medication today, so I'm a bit fitter.

At 2.25 p.m. there is still a little more energy.«

The 39-year-old sticks to a strict daily schedule, and any overexertion can lead to a permanent deterioration in his condition.

Before we can talk to him any longer, he needs to rest.

Since the illness, the life of his brother Farzan and his family has changed completely.

Faraz had to move back into his parents' house in Esslingen near Stuttgart because his wife, who works, cannot look after him continuously in the shared apartment.

What remains are snapshots from another time, from life before the illness.

Farzan Fallahi, brother of Faraz

»As always with souvenir photos, beautiful on the one hand and sad on the other.

This is our last holiday together, we were in Egypt together.

Faraz, his wife, his best friend and me.

We always did a lot of nonsense there.«

'It's funny knowing he's behind you and he doesn't hear anything or see what's going on out here.

He doesn't hear the brightness, the children screaming around here in the background at school, because he lies in there with headphones and blindfolded and it's always dark."

Faraz has a degree in computer science and dreams of a large family.

He loves to travel, is adventurous and always up for a joke.

But he never recovered from a flu infection in 2019: pain spread through his body and he became unable to work.

The doctors prescribe exercise, but this leads to so-called crashes.

His breaking point keeps getting lower.

At some point he can no longer move on his own.

Even before the pandemic, an estimated 250,000 people were affected in Germany alone.

Nevertheless, the disease has so far hardly been researched.

What is known: Viral infections are known to trigger ME/CFS, such as the Epstein-Barr virus or influenza.

The current Covid-19 pandemic shows that those affected by long-Covid can also develop ME/CFS, so experts assume that there will be a significant increase in those affected.

It's now almost two-thirty and Faraz will soon reach his daily time slot, in which he has a little more strength and can talk to us.

We shoot the interview in almost complete darkness with a light-sensitive camera so that the visual stimuli are as minimal as possible.

Birgit Großekathöfer, DER SPIEGEL

"

How do you stand it?"

Faraz Fallahi, ME/CFS patient

»

Lying down?

I couldn't do anything for the first few months.

I could really only lie there from one break to the next.

I couldn't even look at the phone.

You can't stand it.

That's not a choice you have.

You go insane in your head.

This is also something I have been told by others I speak to who are also affected.

In fact, you wish you could fall asleep every night but not wake up.

«

So far it is known that ME/CFS is an often severe neuroimmunological multisystem disease.

The brain can be affected, so some patients develop dementia-like conditions and suffer from speech and concentration disorders.

However, ME/CFS can also affect the heart, for example by causing arrhythmias or heart palpitations.

In addition, there may be shortness of breath or shortness of breath and extreme exhaustion.

If an individual stress limit is exceeded, the symptoms can become permanently worse.

In Berlin, Carmen Scheibenbogen manages one of only two outpatient clinics in Germany that specialize in the disease and have been completely overrun since the pandemic at the latest.

Carmen disc arch, Charité Berlin

"It's a catastrophe, because most of them don't have any proper care at all, and the bad thing is, because the disease is often wrongly classified, the general practitioners don't take it seriously either, they often just don't know any better.

It is then often classified as a psychosomatic illness or somatic stress disorder or even depression, and the recommendation that physical activity is important applies, and then the severity of the illness is often misjudged.”

So far there is no therapy that cures the disease – and therefore there is little hope of improvement.

In their distress, those affected try to self-medicate, often with preparations that are actually intended for other diseases.

Faraz Fallahi, ME/CFS patient

»Not everyone with the disease is affected as badly as I am.

I just wish for people that there is a therapy that takes them a little way back into life.

For me there is always the switch between reality and hope in my head.

In reality, I don't see myself going anywhere.«

Faraz can now hardly eat solid food.

He hasn't eaten a steak, one of his favorite dishes, for a long time.

His 70-year-old mother goes onto the balcony with the mixer, the noise of the device would bother Faraz in the next room too much.

He perseveres because he has found a task for himself.

Faraz Fallahi, ME/CFS patient

"Together with other volunteers, we also fight from our beds and apartments to draw attention to politics."

Faraz Fallahi, ME/CFS patient

»

We don't have much time left and then nobody will talk about Long Covid, about ME/CFS or about care structures or anything else.

And then even fewer politicians than now will be in the mood for it, even less interested.

And then the train left and that's why something has to happen now.

Yes… 55?”

Birgit Großekathöfer, DER SPIEGEL

"Now do we have to call it quits?"

Faraz Fallahi, ME/CFS patient

'Yes, break up.

Exactly."

Source: spiegel

All tech articles on 2022-10-02

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