[Sweden] Metro.se: "Anja got a sore throat - is now bedbound 23 hours a day"


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Metro.se: Anja fick ont i halsen – är nu sängbunden 23 timmar om dygnet


Here's a slightly edited Google translated version, in English:

Anja got a sore throat - is now bedridden 23 hours a day

Anja Olergård, 46, moved to England to work. There, her life changed forever - she became ill with the neurological disease ME. "I got a throat infection, and then I never recovered," she says.

Anja Olergård, 46, suddenly fell ill when she was 24 years old. Today she is diagnosed with ME - something that changed her whole life.

This is myalgic encephalomyelitis
  • ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis is an inflammation of the brain and spinal cord. CFS stands for cronic fatigue syndrome, which means chronic fatigue syndrome.

  • ME/CFS is classified as a neurological disease.

  • It affects somewhere between 0.1 and 0.4 percent of the population.

  • In 75-80 percent of cases, the disease begins in connection with an infection.

  • The most severely ill are completely bedridden and might be in need of tube-feeding or drip.

  • For adults, the disease is in the current situation almost always chronic, but hopefully biomedical research will lead to effective therapies in the future.

  • In Norway studies on the cancer drug Rituximab are currently being carried out, which has been shown to be effective in 2/3 of patients.

    Source: RME
The move to England was the beginning of the then 24-year-old Anja's adulthood. She had previously lived in Switzerland and has been in the Caribbean; she was curious about life. But she got a throat infection, was tired and feverish and had malaise throughout the body.

- I thought I would be back on my feet again in a few days, but weeks went by and I actually got worse, she says.

Anja was diagnosed with myalgic encephalomyelitis, ME. The disease manifests itself differently in different people. For some it is relapsing-remitting, but Anja, who now is 46 years old, becomes constant worse.

- I get more new symptoms and some old symptoms get worse, such as constant exhaustibility, severe migraine and sleep disorders. I am bedridden 23 hours per day, says Anja Olergård.

► DEBATE: Claudia can be left lying for days: My life has become a prison

She has sound and light sensitivity, difficulties concentrating, poor multitasking and memory problems.

- I actually really love to read, but can not do it anymore. I can not keep track of the characters or the events. I can not even read comics. When I come to the last box I have already forgotten the first.

Anja describes her life as very limited. Her husband does all the housework and she gets help from the home care services when she takes a shower.

The disease has changed Anja's whole life, but she still feels questioned - even though ME is classified as a neurological disease according to the World Health Organization.

- I get sad when people say "everyone has felt tired, you just need to try a little harder." One time I met a doctor who told me that the disease does not exist, that it's just a waste-basket diagnosis, says Anja.

►READ MORE: The doctor told Bjarne, 45: Your diagnosis of fibromyalgia is fictional

The most seriously ill ME patients are lying in dark, soundproofed rooms, can not stand up in order to go to the bathroom, get nutrition through a tube and have constant severe pain.

- I hope I do not become one of them, and that the research progresses. I have a tiny life, but I wish to become healthy, to read a book, travel through Italy or go on the amusement park rides until I am totally dizzy.

The Doctor: Difficult to diagnose ME patients

ME affects up to 0.4 percent of the population. But according to Jonas Blomberg, laboratory doctor and emeritus professor of clinical virology at the University of Uppsala, it is difficult to make the right diagnosis. However, the research field is moving forward.

According to Jonas Blomberg, ME, myalgic encephalomyelitis, is as common as multiple sclerosis, MS. However, it is not uncommon that people never get the right diagnosis, or that it takes a long time before they find out that they suffer from ME.

- There are many doctors who do not know about ME, because it is not included in medical school. How to make the diagnosis is something that is developing, says Jonas Blomberg.

Most commonly, ME starts with an infection, such as mononucleosis. The affected person can later experience extreme exhaustibility that does not go away.

- We don't know how it works, but it seems like you can get poor control of the energy metabolism, there isn't enough energy in the muscles, says Jonas Blomberg.

►READ MORE: Annika, 31, had MS - was dismissed as hypochondriacs

ME is sometimes called by the name chronic fatigue syndrome, which can be misleading because ME patients can be very alert during rest. The exhaustibility doesn't comes until they expose themselves to strain or mental effort, according to Jonas Blomberg.

- You get an abnormal exhaustibility. It's like having done a very hard workout session that forces you to rest for a day or two.

Research in this area is moving forward, and Jonas Blomberg is hoping that it will become easier to make a diagnosis in the future.

Can an ME patient recover completely?

- I think it is unusual but I can not say for sure. It seems that very few recover.

Common symptoms of ME/CFS are:
  • Constant exhaustibility
  • Malaise that is triggered when you exert yourself, and that persists for more than 24 hours
  • Problems with sleep
  • Sore throat
  • Swelling of the lymph nodes
  • Joint pain
  • Muscle weakness
  • Headache
  • Gastrointestinal issues
  • Difficulties with concentration
  • Reduced tolerance to stress
Source: Vårdguiden
(This post has been edited to remove "depression" from the list of symptoms, to reflect the same recent change in the original article and in Vårdguiden :) Thank you RME!)
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