I am curious about the clinic Stora Sköndal outside Stockholm in Sweden which was mentioned in the segment. As far as I understand they have a started a clinic for ME-patients as part of their neurological ward quite recently? And this has gotten so popular that they have stopped accepting new remissions and are in process of hiring more staff.
I would like to know a bit more about their approach to ME and on the experiences from patients who have been there.
Sorry about the late reply. I was trying to get some of the people who are patients at Stora Sköndal to come here and answer your questions... maybe some of them will show up here later?
Here is their website:
http://www.storaskondal.se/varverksamhet/neurologiskrehabilitering/mecfsmottagning
I haven't been there myself, so I have no first-hand experience myself. What little I know comes from following RME's updates, having talked to a few of their patients about their experiences and reading the discussions in a couple of the Swedish groups.
They do indeed have biomedical approach. And yes, it is located at the neurological rehabilitation center.
They opened in August 2015, and because of the long-standing countrywide lack of ME/CFS specialists, they have been completely swamped from the very first day. They are sorely understaffed but recruiting is a huge challenge, there simply aren’t enough competent doctors. The centre has an extremely long waiting list, and is therefore currently not accepting new referrals (since December 16, 2015).
This new center is different than the previous projects in the Stockholm region from a few years ago, at the Danderyd and Karolinska hospitals. Those earlier projects aimed at developing rehabilitation methods, not investigating or treating patients, and they focused mainly on CBT... and have been more and more debated as time goes by.
This new center accepts ME/CFS patients of all ages from all over the country (also through "egenremiss", whatever that is called in English? When the patient him/herself writes the referral?), and their mission is to offer medical care and research. They use the CCC for diagnosis. They also do deeper medical investigations and assessments of patients, additional tests, make diagnoses, write medical/doctor's certificates (is that the right word?
läkarintyg in Swedish), prescribe medications and offer counseling and rehabilitation measures (physiotherapist,
occupational therapist etc) according to the patients' individual needs. They (including the doctors) make home visits to the severely ill as well.
I don't know what kind of biomedical research they are doing or are planning to do. I've been told that they have several interesting ideas. I would love to know more!
There are currently two doctors there, one is a specialist in rehabilitation medicine and the other a specialist in neurology. They both work part time at the ME/CFS center, sharing a full-time position. Both have long clinical experience and both are published researchers.
There's also a nurse and a rehabilitation team consisting of an occupational therapist, a physiotherapist, a counselor and a neuropsychologist. According to their website, the team has previous experience of neurological rehabilitation work for brain/mental fatigue and cognitive issues (personal opinion: I suspect they might be quite new to ME/CFS... learning by doing).
Them being swamped and understaffed is obviously a huge issue for everyone involved... I saw someone (a pwme) mention that they had been told that it would take up to 2 years between sending in their referral and actually getting the first appointment... understandably, people are impatient and upset...
But at the same time, it appears to be a wise thing to do, not to accept more patients at this time. They are already struggling to take care of the patients they already have, and needless to say those patients wouldn't want to be discharged early and sent back to the primary care provider...
This problem will likely only become bigger in the future, seeing that the (other main biomedical center) Gottfries Clinic's contract won't be renewed
I can't imagine that those patients will be be happy with the new (bio)psychosocial services that will replace Gottfries... they will still be in need of biomedical specialist care.
Regarding treatment options, I'm afraid I don't know enough to comment on that. So far my general impression is that most patients are very happy just being listened to and respected, having their experiences validated, and not having to deal with the usual ignorance, psychobabble, suspicion and accusations etc.
What I've seen mentioned so far is the usual stuff, like medications for sleep and pain management, physical therapy, CBT (for coping! not the BPS version). B12 injections and/or low dose naltrexone (LDN). But I know they are open to discussing other options as well.
If you have specific questions, I'll try to find answers for you
