Worldwide Tour Blog

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

Posted on: June 29, 2017

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…

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

Posted on: June 23, 2017

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…

RME Sweden Shares Blog Post on Worldwide Tour Visit

Posted on: June 23, 2017

(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…

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

Posted on: June 22, 2017

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…

The Strength of Support Groups – Reflections from the Tour

Posted on: June 21, 2017

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…

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

Posted on: June 16, 2017

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…

Day 14: Antwerp – Belgium (June 7)

Posted on: June 14, 2017

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…

IiME Conference: Patient Day (June 2)

Posted on: June 14, 2017

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…

Inspiring visit from Linda Tannenbaum, from OMF in California, 24 – 26 May

Posted on: June 12, 2017

Information provided by Celia Marshall, ME Support, Isle of Man We gave Linda a jammed packed programme of meetings with various people including the Minister Kate Beecroft (photo), presentations to Members of Tynwald (Isle of Man Parliament) a public meeting, informal meetings with members, and Manx Radio, all to raise awareness and move forward government plans to set…

Tour Impressions: “My heroes are not footballers or movie stars, but people like you and Ron”

Posted on: June 6, 2017

It has been so heartwarming that everywhere I visit in Europe, people are so happy and appreciative to hear first-hand research updates. They are feeling a sense of real hope for a better future. One of the Isle of Man organizers contacted OMF saying, “My heroes are not footballers or movie stars but people like…

Major announcement from Northern Ireland following OMF visit

Posted on: June 5, 2017

Dear Friends, I have a very exciting breakthrough to share with you as a result of our tour of hope and visit to Northern Ireland Dr. Ian Clements, Chairperson of the Health and Social Care Board has confirmed that ALL 365 General Practitioner (GP) practices in Northern Ireland will receive new updated information on ME/CFS…

Linda’s Impressions: “My heroes are the fighting patients and parents I have met so far”

Posted on: June 2, 2017

I am one week into my European tour of Hope. I have been to the Isle of Man, Ireland and Northern Ireland. This truly has been a fantastic experience meeting passionate advocates, caring people, desperate parents, and wonderful, determined patients. With so many people showing up to the talks in these countries, I can’t possibly…

June 1: Meeting Friends and Collaborators at IiME in London (Day 9)

Posted on: June 1, 2017

Good Morning Dear European ME/CFS Friends and Supporters, As I prepare for the Patient Day at the Invest in ME International Conference in London, I quickly wanted to update you on yesterday’s events. OMF again had a very exciting day at the Research Colloquium for scientists. We started off early with a productive breakfast meeting…

Arrived in London at BRMEC! May 31

Posted on: June 1, 2017

I’ve arrived in London at the 12th annual Invest in ME conference (BRMEC7) late Tuesday night. On Wednesday morning we started off the day at breakfast with Drs. Jonas Blomberg and Jonas Bergquist of Uppsala University in Sweden. They updated us on their research funded by OMF. I am here with Dr. Ron Davis who…

May 29: Newry – Northern Ireland (May 29)

Posted on: June 1, 2017

After a very exciting weekend in the Republic of Ireland, I was invited to the other part of the Island, Northern Ireland, which is part of the United Kingdom, by “Hope 4 ME & Fibro”. Thomas McParland was kind enough to come to Dublin to pick me up and drive me to Newry, the first…

Isle of Man: Improved ME/CFS Care On The Horizon After Linda’s Visit!

Posted on: May 31, 2017

Update provided by Isle of Man ME Support Group. On Monday, Celia Marshall Chair of the Isle of Man ME Support Group, said on Manx Radio that improved care for ME/CFS patients could soon be on the horizon. She says talks are on-going with the Department of Health and Social Care about what services could…

May 30: Belfast – Northern Ireland (Day 7)

Posted on: May 31, 2017

On Tuesday May 30th, my 7th day into the European Tour of Hope, I visited Belfast in Northern Ireland. Andy Hugh made it very easy for me and took me by the hand every step of the way from Newry to Belfast. Thank you Andy for taking care of me in such a warm way…

May 28: Dublin, Republic of Ireland (Day 5)

Posted on: May 29, 2017

On Sunday, May 28th Linda gave an inspiring presentation at a public meeting in Dublin at an airport hotel. The meeting was set up by Tom and Vera Kindlon of the Irish ME/CFS Association. Over 80 people attended: half of them were patients, and the other half were parents and caregivers. Linda had the honor…

May 26: Meeting with Tom Kindlon in Ireland

Posted on: May 27, 2017

On Friday May 26th Linda arrived in Dublin (Republic of Ireland) and was picked up by someone voted “Best Taxi Driver” in Dublin. This great taxi driver took Linda to visit the brilliant and famous Tom Kindlon and his lovely, never-give-up mother, Vera. Linda was very honored to being able to visit Tom on this…

Isle of Man Visit May 24-25: Overall impressions from Linda Tannenbaum

Posted on: May 27, 2017

Dear Isle of Man friends, Dear Team OMF friends, I just finished a very heartwarming visit to the Isle of Man, a beautiful island 30 miles by 10 miles with views of the bay almost from everywhere. It is a small “paradise” with lovely people and I had a very warm welcome. The island has…

May 25: Isle of Man (Day 2)

Posted on: May 26, 2017

Linda’s second day started with two meetings that focused on proper medical care for patients and for better school accommodations for sick children, two of the main pillars of OMF. Linda and Team OMF Isle of man met first with the team that currently treats adult ME/CFS patients, Jo Roberts OT and Jugnu Mahayana, Medical…

May 24: Isle of Man (Day 1)

Posted on: May 26, 2017

On Thursday 24th of May, Linda started her European “Tour of Hope” with a very exciting day on the Isle of Man, a beautiful island located in the Irish Sea between Great Britain and Ireland. She had been invited by the “ME Support Group” to work together in a joint mission for better ME/CFS patient…

May 22: Embarking on Europe!

Posted on: May 25, 2017

Dream. Believe. Do It…Join Team OMF in Hope! On Tuesday May 22nd Linda Tannenbaum left California with her husband Don to embark on OMF’s End ME/CFS Worldwide Tour European visit and bring hope to patients and their families. OMF’s spectacular Scientific Advisory Board, including three Nobel Laureates and renowned scientist Ron Davis as Director, is…