Worldwide Tour Blog

omf-newsletter-2017-06-3

BU News Service: A Problem Coffee Cannot Fix; Boston Community Comes Together for ME/CFS

by Sarah Wells “Imagine you had the worst flu ever, but it never went away,” said Linda Tannenbaum, a clinical laboratory scientist, to a crowd gathered at Newton-Wellesley hospital earlier this month for a research update. She was describing myalgic encephalomyelitis/chronic fatigue syndrome, more commonly referred to as just “chronic fatigue syndrome.” Despite its mild-sounding name, chronic…

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Continuing The Worldwide Tour to Spread Hope Around the U.S.

Dear Friends, After my European Tour of Hope in May/June, I continued this fall in the USA and that has left me at the end of this year with wonderful long lasting impressions! The last months offered me many occasions to interact again with patients, parents, support groups and patient leaders, not only to inform them about…

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Message from Linda: “What I learned From My European Tour of Hope”

Dear ME/CFS friends, I just finished my European Tour of Hope and arrived back home. The last month I have been travelling through 6 European countries and had dozens of lectures and meetings with patients, parents, government officials and doctors. I have learned a lot and was humbled and acutely aware of the very important…

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Reunited With My Swedish Friends (OMF Sweden): June 19 & 20

On Monday June 19th, I arrived in Stockholm for the second part of my Swedish visit. I was welcomed by our friends at RME, Kerstin Heiling, Hendrik Fransson and Jenny Lundgren. They organized and hosted a talk with about 30 people, including many parents. At the event, I met Susanne Froroth, also from RME. I…

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RME Sweden Shares Blog Post on Worldwide Tour Visit

(Blog Post translated by Google Translate and shared with permission from the RME website.) Member meeting in Borås, part 1-Visit by Linda Tannenbaum from Open Medicine Foundation Camilla Gillberg, RME Sweden’s Secretary, reports from Member meeting held in Boras on Sunday, and also tells us when she met Linda Tannenbaum for the first time: For 3.5 years ago, in October…

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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…

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The Strength of Support Groups – Reflections from the Tour

On my travels through Europe I am reminded of the incredible work done by national organizations and local support groups on so many levels, and how important these groups are for patients and parents in those countries. Most European countries have one or several big and smaller support groups, with members ranging from a few…

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Visiting Norway, Home to Two of Our Newest Scientific Advisory Board Members (June 12)

I am in my fourth week of OMF’s European Tour of Hope and had the joy today of being able to meet with our Norwegian ME/CFS friends again. They welcomed me warmly in beautiful Oslo, a city surrounded by the most spectacular scenery, including fjords, lakes, mountains and forests. The Norwegian ME Association organized a…

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Day 14: Antwerp – Belgium (June 7)

Nederlands Today, for the first time, I visited Belgium. What a beautiful country with wonderful medieval towns. My husband Don accompanied me to a conference hosted by Wake Up Call Beweging. 55 people, mostly patients and parents, attended the event. Some of these parents have very young children. Their personal stories touch me deeply, and…

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IiME Conference: Patient Day (June 2)

I have been attending the IiME Conference for four years. Each year, one of the highlights of the conference is the Patient Day. This is the day when new and old friends come together and feel the support and strength of our community. Each year I am inspired by the commitment and resolve of the…

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