Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Reunited with My Swedish Friends (OMF Sweden): June 17-20

Traveling is an adventure. Yesterday after a flight and two trains, I arrived in Gothenburg 11 1/2 hours after I left my hotel in Bergen, Norway. I certainly saw some beautiful sights along the way (picture: view from the train)!

Erik and Lena Nilsson kindly made all the arrangements for my visit. They picked me up and took me to the Gottfries Clinic, which for many years was the only clinic in Sweden that saw ME / CFS patients. My last visit to the Clinic was Oct 2013. During my visit, I met with Drs. Carl-Gerhard Gottfries and Olaf Zachrisson (pictured below).

We have learned, unfortunately, that the government in Gothenburg is no longer paying for patients to be treated there. The ME / CFS community is working to get that coverage reinstated but is having a very trying time of it. The Clinic needs backing by the government to be able to treat patients so that the patients do not have to pay and travel many hours to Stockholm to see an ME / CFS specialist. This is a real problem in this area of Sweden. It is not the same as in Stockholm, which has had a clinic for the last two years that is paid by the government. If anyone can help them with this situation, please contact the Swedish patient support organization RME.

Today, RME West graciously hosted my talk in Boras. Camilla and Klas Gillberg made all the excellent arrangements. About 30 people, many of them parents, attended the event. I was thrilled to be here, and it was very nice to see some familiar faces. I had a lot more to say than I did 3 1/2 years ago. It really highlighted for me that a lot of research has happened in the last few years. (Pictured below: RME organizers Camilla & Klas Gillberg and Erik Nilsson).

After my talk, there was a presentation by the company No Isolation. No Isolation has created a robot that allows children to take part in activities in their school classrooms and other places from their home. It is a promising tool that can help patients with ME / CFS and other diseases to stay connected with their communities and preserve a sense of belonging, even if it is difficult for them to leave the house.

Tomorrow, I will take a train to Stockholm to meet with more new and old friends.

 

With hope for all,

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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