In this post, a person with very severe Myalgic Encephalomyelitis (ME), living in the region of Stockholm, tells how she received good care at a specialist clinic for ME, but that it unfortunately was not enough. The region has two ME clinics that have contracts with Stockholms County Council.
1. How long have you been ill? If you have a confirmed diagnosis, how long had you been ill before receiving an ME diagnosis? Did you get the right diagnosis right away?
I fell ill in 2016 and gradually got worse . During 2017 I was on 100 % sick-leave, and suffered from an extreme lack of physical energy, fever, headaches and stomach problems. As no one knew what was wrong, I was pushed around in the healthcare system for about 10 months.
In December 2017 I was referred to Bragée ME center, where I got diagnosed with severe ME and hEDS/hypermobility almost immediately.
They also soon came to suspect a neck injury had caused my ME, and in October 2018 I went to Medserena for an Upright MRI (in the UK), where they discovered I had craniocervical instability (CCI, AAI, SAI etc).
Following this I became acutely ill to the point of almost dying, with severe apnea. I was bedbound 24/7, wheelchair-bound and needed a neck collar in order to even sit up.
On March 21, 2018, my life was saved by a surgery performed in Spain, where my entire neck was operated on with intraoperative traction (from C0-T1). The operation cost SEK 800,000 and was financed through fundraiser, I received no help in Sweden and was denied economic compensation in advance by the Swedish Insurance Agency. Today 8 months later I can (walk? ) again and half of my 60 symptoms are completely gone and 20/60 are better. My very severe and life-threatening ME is in remission and I have regained parts of my life.
2. Have the treatment and response you've received been based on adequate knowledge of ME?
Yes, I have met clinicians, pain specialists, neurologists, nurses, physiotherapists, occupational therapists and dietitians with knowledge of ME, through the Bragée ME Center. They have taught me about pacing, light symptom relief, pain relief, wheelchair aids and educated me on ME, EDS and the connection with neck injuries.
Unfortunately, Bragée could not provide any treatment or care for my severe craniocervical instability, and I was left on my own to manage that, to search for and book appointments to treatment abroad myself.
3. Has the care you've received been adequatly accommodated to meet your needs? Have you received care close to, or in your home?
The examination and response I received at the Bragée ME center (located in Stockholm) was very good. All employees at Bragée are very knowledgeable, but unfortunately the care they can offer is affected by what the County Council consider to be part of their contract.
Bragée made home visits, provided aids and symptom relief. Unfortunately I did not receive any adequate care att all in Sweden for my neck injury, which was the reason I developed severe ME and that eventually became life threatening.
Bragée referred me for an Upright MRI in the UK (paid it myself but was refunded retroactively by the Swedish Social Security Agency ).
Through this I found out I had severe ligamentous neck injuries that had caused a craniocervical instability (I was injured in the gym in 2015 and then had a fall accident in the summer of 2016).
Although my doctors at Bragée could see what caused my problems, they couldn't help me or send a referral to a neurosurgeon, as knowledge of how to interpret scans from Upright MRI is lacking in Swedish neurosurgeons. I therefore fled to Spain, in pure desperation, to be operated on when the situation became acute.
The care for ME in Stockholm is incredibly good, the best in Sweden. Thanks to Bragée ME center, I was thoroughly examined and received knowledge about ME. They taught me about pacing, which was crucial to relieve my symptoms and help slow down the deterioration.
It's also thanks to Bragée ME center I found out the reason why I developed severe ME.
Unfortunately, this is not enough, and when you find a cause that can be operated on according to international evidence, the operation must be either performed in Sweden, or financed by Swedish Authorities.
Sweden must ensure that all clinicians are educated and receive knowledge about ME, that accurate diagnoses are established quickly, including EDS and neck injury/ craniocervical instability that (correlates?) with overlapping symptoms.
Sweden further needs to acquire the proper examination method, Upright MRI, to examine ligamentous neck injuries.
Neurosurgeons then need to be trained in how to interpret upright radiology and to understand how complex the symptoms caused by ligamentous neck injuries are.
Then, neurosurgeons need to be trained in the technique used abroad, to perform cervical spinal fusion surgery of the entire neckline C0-C2 and C0-T1 with intraoperative traction, using bones
