She got the unique help at Sköndal - now the clinic is forced to refuse referrals
From active to totally exhausted. The disease changed Cecilia Grevby's life completely, but at Stora Sköndal's center for those formerly called chronically fatigued, she has been helped. "I've gotten the joy of life back," she says.
Cecilia Grevby describes herself as a doer - marine biologist and former researcher, outdoorsman constantly out in the woods or kayaking and skiing trips.
But that was before 2010. That year, she suffered several severe infections, and she went through a simpler surgery. After that, she never really recovered. She tried to work but after a year of struggling, she realized that it did not work.
- I was completely exhausted and it only got worse. I was on sick leave, eventually at full time.
Two years after the initial infection, she finally found out what was wrong. On a specialty clinic in Gothenburg, she was diagnosed with ME - formerly chronic fatigue syndrome - which may be briefly described as the sufferer becomes severely exhausted from physical exertion. Today Cecilia does not work, and she is not able to do everyday tasks like grocery shopping or go by public transport.
Too much impression
- There are too many impressions and brain and body is completely revved up. The body feels like concrete and I can only shuffle my way to the nearest bench and sit down. I usually say that it is like taking quick cash loans with high interest rates, but with energy. Now that I've been here with you, I will have to rest for several days afterwards.
After diagnosis followed a struggle to get the right treatment. Cecilia says that the rehabilitation she has been offered has been focused on constantly raising the bar and increasing working hours or increasing the distance of her walks. She became worse and worse - until last fall. Then she was waiting outside the door when Stora Sköndal opened its ME center and she managed to get a referral there.
- I think their rehabilitation work perfectly! It's about learning how to manage the disease and does not force an improvement.
What is special about Stora Sköndal's center is that it specializes in ME and that the patient has a full rehab team around him, besides that you meet a doctor. The team includes occupational therapist, physiotherapist, and if necessary, counselor or psychologist.
"Had the joy of life back"
Cecilia Grevby describes that she had help putting together a training program with simple stretching movements to prevent the body atrophy, which is actually happening gradually, as she sits and lies down so much. The occupational therapist has helped to develop a schedule that gave Cecilia's everyday life structure.
- It feels like I got the joy back to be able to handle my everyday life!
In the beginning Cecilia went to Stora Sköndal every week, now she is there about once a month. She thinks that she has become a little better since she started rehabilitation there, and when she talks about the future, she sounds cautiously optimistic.
- I hope to get better. My dream is to be able to work, but I do not know how realistic it is.
Refusal of referrals introduced: More ME centers are needed
Pressure on Stora Sköndal's ME center has been high from the start and since December they have stopped accepting new referrals. "It is obvious that more clinics are needed," says operations manager Lena Nilsson.
Stora Sköndal's ME center opened late last summer and now has about a hundred patients, and it keeps getting more filled all the time. But there are far more who want to come to the center - in December they had received 600 referrals and had to start refusing referrals.
- The stop was introduced to protect patient safety. We still have not assessed all the referrals and in this pile, there may be those who have a completely different disease than ME and need treatment elsewhere. While waiting for a response from us, it may also be that patients pause their contact with the district health center or the like, and then they get no care at all. It is not fair that patients get a false impression that they are on a waiting list, says operations manager Lena Nilsson.
Only in Stockholm
There are only a few clinics in Sweden who specialize in ME in particular, Stora Sköndal is the only one in Stockholm. They have received referrals from all over the country.
Lena Nilsson can not say for how long they will refuse referrals. Right now they are looking for more physicians to join the clinic in order to receive more patients, but she thinks that more specialized clinics are needed.
- It is obvious that there is a need. But attention on ME has grown in the past year I think, and there is much new research coming that might show more treatment models. It can make it so that more clinics open, that also specialize in ME.
This is ME/CFS
ME/CFS stands for myalgic encephalomyelitis/chronic fatigue syndrome. The disease was formerly called kroniskt trötthetssyndrom ["chronic fatigue syndrome" in Swedish -mango].
It is estimated that up to 40,000 people may suffer from the disease in Sweden.
ME can affect anyone, but is most common among women between 25 and 40.
The disease is often long-term. Only 10 percent of those affected will recover completely, but many patients get better over time.
