OMF's End ME/CFS Worldwide Tour Update

[Ben H]

Embarking on Europe:
Meeting Friends and Collaborators at IIMEC13 in London

Dear all,

My husband Don and I left California last Monday May 28th to embark for Europe again on our OMF End ME/CFS Worldwide Tour, to discuss research, bring updates, share hope, ideas, and raise awareness. Being parents of a sick daughter, we are well aware of how important hope is for all of you with ME/CFS!

Our first stop was London, BRMEC8 and IIMEC13, and we were honored to be joined by six of our Scientific Advisory Board members. We were especially excited to have Dr. Ronald Tompkins there as well, since he will be leading our newly funded ME/CFS Collaborate Research Center at Harvard under the direction of Dr. Ron Davis.

OMF's Team in London 2018, L to R – Linda Tannenbaum, Øystein Fluge,
Jonas Bergquist, Ron Davis, Maureen Hanson, Wenzhong Xiao, & Ron Tompkins

There were about 20 countries represented at IIMEC13 and 14 at the science meetings. OMF had a table on the community day and Drs. Ron Davis, Ron Tompkins and Wenzhong Xiao joined me to meet and greet attendees. It was so wonderful to meet with old and new friends; it definitely feels like a reunion each time. There were friends from Italy and the Netherlands of which I will meet again soon, and some other countries approached me already to invite me for a next year tour visit. I felt deeply honored and humbled by these invitations.

We had very productive scientific meetings at BRMEC. On Friday June 1st (IIMEC13) Dr. Davis presented "Revolutionizing biomedical research through technology development". In his talk Dr. Davis shared new very exciting information from the Severely ill Patient Study (SIPS) that will hopefully help the entire ME/CFS field and all patients. ”If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relatively inexpensive.”

Invest in ME again did a wonderful effort to provide a platform for the latest and most promising biomedical research into ME/CFS. Carol Head (Solve ME/CFS Initiative) gave a great talk at the preconference dinner meeting about the status of ME/CFS in the USA.

I truly feel blessed, not only being able to be here with our inspirational delegation and so many other brilliant scientists from around the world, but especially to connect and share time with patients and caregivers. They are the ones that inspire me every day.

Thank you for all your wonderful comments and feelings; many approached me that we are really giving them hope for the first time. This love of the ME/CFS community inspires us every day to find answers soon, or as Margaret Mead says: “A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has.” And as we collaborate and share hope, anything is possible!

With hope for all,

Linda Tannenbaum
CEO/President



www.omf.ngo
www.omf.ngo/end-mecfs-worldwide-tour/
www.omf.ngo/worldwide-tour-blog/

@Janet Dafoe (Rose49) @AshleyHalcyoneH

 

[Sushi]

If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relatively inexpensive.”

This certainly jumps out!

 

[raghav]

In his talk Dr. Davis shared new very exciting information from the Severely ill Patient Study (SIPS) that will hopefully help the entire ME/CFS field and all patients. ”If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relatively inexpensive.”

What is the new very exciting information ? Can somebody share it with us ?

 

[Ben H]

Meeting New & Old Friends in the Netherlands

Dear all,

After London, Don and I traveled on June 2 to the Netherlands (Utrecht), our second stop on our OMF End ME/CFS Worldwide Tour 2018 and our first visit to this beautiful country with so many bikes everywhere! We couldn’t wait to finally meet with old and especially new Dutch friends, some of them members of our International Translations Team, who helped us this year with over 45 Dutch translations, including translating the resources for this event.

On Saturday night, we enjoyed the evening with our dear friends Rob Wijbenga, and Eddy Keuninckx and his lovely wife Nicole. We had the chance to thank them again for their great work with the ME Global Chronicle and to catch up since our 2017 Tour.

L to R – Linda & Don Tannenbaum, Rob Wijbenga, Eddy & Nicole Keuninckx;
Utrecht, Netherlands

On Sunday, we finally had the chance to meet with Carolien van Leijen and her great team of the ME/CVS Vereniging, who coordinated and organized an absolutely amazing event here in Utrecht. The room was fully packed with about 100 attendees, half patients, and half parents, caregivers and family members. In my talk I focused on sharing a research summary and updates. After my talk, Ruud Vermeulen, PhD, spoke about recent events in the Netherlands and Europe to support research and treatment of patients.

We had lots of great questions from an engaged and interested audience, with whom I had a chance to meet afterwards. I also met two lovely people from the KissMEGoodbyegroup and Rene Roberts (Walk for ME) and thanked them personally for their impressive actions. During the coffee break, I was interviewed by a Dutch journalist who asked interesting questions, and he will write about the status of ME/CFS in the Netherlands and the fact that it is real disease.

It was lovely to meet our new Dutch friends and to share hope with them after the difficult challenges they have been facing. In 2011, a group of 10 severely ill patients (Group ME Den Haag) started a petition to recognize ME/CVS.

The petition was presented to the Dutch Parliament in 2013 and led to the installation of a “Committee ME/CVS.” The Advisory Report of the Dutch Health Council was published and presented to the Parliament and Government/Minister of Health in March 2018, stating that “ME/CFS is a serious disease that is accompanied by substantial functional limitations, and a patient’s decision to forego CBT or GET should not be regarded as inadequate recovery behavior.” The Dutch patients – helped by patients, advocates and doctors from all over the world -- showed us again the strength of patient advocacy working together for a common goal: better healthcare and biomedical research for patients in the Netherlands and worldwide. It was an absolute honor for me to be here and meet some of these great advocates!

At the end of the event, I got a wonderful T-shirt with a great ME cartoon (by Djanko), and Carolien finished the day with an unexpected special presentation and surprise (photos below): “Linda and Don, in the last few weeks several groups and people donated to OMF using the account of the ME/cvs Vereniging. There were bigger and smaller donations, among them KissMEGoodbye and a patient who asked to give her a birthday present by donating, and also from members of the ME/cvs Vereniging. On this check, the amount we transferred to OMF today!”

We would sincerely like to thank our wonderful hosts, Carolien and the team of the ME/CVS Vereniging, for this incredible event, made special by everyone’s warmth and generous support of our research. We felt so welcomed and cared for. We will always remember our lovely visit to the Netherlands. Thank you to all of our wonderful friends in the Netherlands. We left your country with a very warm feeling.

With hope for all,

Linda Tannenbaum
CEO/President



www.omf.ngo
www.omf.ngo/end-mecfs-worldwide-tour/
www.omf.ngo/worldwide-tour-blog/

 

[Ben H]

Tour impressions after a unique event in Italy:
"My heroes, the fighting patients, parents & caregivers."

Dear all,

We arrived Thursday, June 7, on our last stop of our End ME/CFS Worldwide Tour in Zanè, a town in the province of Vicenza, Veneto, Italy. We were welcomed with a lovely dinner we shared with Giada Da Ros, President of the CFS Italian Association, Paolo Maccallini , Dr. Eligio Pizzigallo, and other new friends.

Giada, also coordinator of OMF’s Italian Translations Team, did an absolutely amazing job planning the event on Friday with the teams of the CFS Associazione Italiana onlusand the Associazione CFS onlus.

L: Linda Tannenbaum, Prof Pizzigallo, Giada Da Ros, Paolo Maccallini, & friend;
C: Linda, Giada;
R: Linda, Prof Pizzigallo, and Prof Umberto Tirelli

This event was in many ways quite unique in our field. Giada and her colleagues managed to have it approved as a training session for medical professionals and journalists, and they also received endorsements from five government institutions, including the “Italian NIH!” The room was packed with approximately 150 people; about half were patients, parents, and caregivers. Many drove for hours to be there, and some came all the way from Germany. The rest of the room was filled with journalists (about 25) and doctors/researchers. The eight speakers were excellent, and I was fortunate to have my talk translated as I spoke by translator Valentina. After the talks, we shared a lovely dinner at the same venue.

“It was a smashing success. We were joined by 150 people, who were thrilled to hear all the excellent presentations. Linda’s presence made the difference and we are confident it made a huge impact for the awareness of the community, medical and at large. We are very happy with the engaging and productive afternoon we spent together,” Giada Da Ros, President CFS Italian Association.

L: Linda presenting; C: Friends from Italy & Buenos Aires:
R: Girolamo Carollo, President of the Associazione CFS

While preparing for my travel home via New York for a few more meetings, I am reflecting on our End ME/CFS Worldwide Tour in the U.S. and Europe these past few months. There are several important reasons why I keep doing these talks. It is part of OMF’s goal – which primarily facilitates and funds research -- to deliver hope, and to share, educate, and raise awareness.

A highlight of these talks is that some patients leave their homes for the first time in months or years and actually get to meet other patients, some of whom they have emailed but never met. I personally enjoy meeting so many new friends.
In the Netherlands and Italy, several journalists, doctors, and government officials now have a better understanding of this horrific disease.

Another benefit is that I get the opportunity to meet with other researchers and doctors who speak at and attend these talks and learn what they are doing. We are grateful that throughout our tour, all expenses are covered by the hosting organizations, so all the money we raise on the tour can go to accelerate this urgent research.

We are all in this together. Don, myself, and all our OMF colleagues can’t thank the organizers enough for their excellent work and warm welcomes. Thank you from the bottom of my heart.
With hope for all,

Linda Tannenbaum
CEO/President



www.omf.ngo
www.omf.ngo/end-mecfs-worldwide-tour/
www.omf.ngo/worldwide-tour-blog/

 

[Gingergrrl]

L: Linda Tannenbaum, Prof Pizzigallo, Giada Da Ros, Paolo Maccallini, & friend;

The OMF World Tour sounds amazing and it is great to see the faces of people I have “chatted” with in the past like @paolo! Congrats to everyone involved.

 

[Ben H]

New update:


Dear Friends,

After my stops in London, Italy and the Netherlands this summer, and our inspiring Science Days and Symposium at Stanford a few weeks ago, I continued OMF’s End ME/CFS Worldwide Tour of Hope in the USA this weekend.

Our first stop was the Texas Scottish Rites Hospital for Children in Dallas this Sunday. I gave a detailed update on our ME/CFS research and all we have been doing the last months to accelerate research. As always it was also very important for me to bring hope and to explain to patients, parents, and caregivers what we and others are doing to increase awareness, education, and support. The presentation included Q & A to elaborate on some of the details and answer specific questions. My ultimate goal was to let everyone know, that they are not alone in their battle and that there is real hope.

This event has been successfully organized by Karena, a patient who has been working as a volunteer with OMF for a long time. Despite her illness, Karena was able to do a great job organizing this event and offered some real hope to many in her area.

“I am so encouraged by all of the work that OMF is doing, and I believe they will continue to do great things. I am also inspired by the patient/caregiver community and all that they have accomplished in their advocacy endeavors. I hope that this event in Dallas will be one of many to come in Texas so that eventually we can have more healthcare practitioners with a great knowledge in treating this nefarious disease. And of course, I am always hopeful for an FDA approved treatment and one day a cure!”

Karena also wanted to share a very special message to everyone reading this blog:

“To all the patients, don’t give up, so many are fighting for us, and there will be a light at the end of this very dark tunnel.”

Karena once again illustrated how one person can make a difference, or as Margaret Mead said: “Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.”

Karena and so many others like her, inspire me and our entire team to continue what we are doing to find answers. Thank you to Karena for this warmhearted event. I am looking forward to continuing our End ME/CFS Worldwide tour in 2018 and 2019 in the USA, Canada, and Europe.

Warmly, with hope for all,