MEET OMF IN EUROPE! END ME/CFS WORLDWIDE TOUR BEGINS!

[Ben H]

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 parents. We will never stop until we have found a cure for our children. That is a pledge we all have made to each other.

Joined by Ron Davis, Raeka Aiyar and Ashley Haugen, we hosted an OMF sponsored table to greet friends from 20 countries around the world. During the day, we had time for chats and hugs. I was thrilled to meet leaders from Spain and Italy and so many more. (Pictured is Giada da Ros, President of the Italian Association.)

It was wonderful to see Jen Brea and her husband, Omer. Ron Davis and Jen had a chance to catch up as it was their first-time reconnecting since we were all together at Sundance last February for the premier of Unrest. They both had so much to share with each other. (Pictured below.)

The day was filled with outstanding talks and presentations. The closing speaker for the Patient Day was Ron Davis. He delivered a very powerful and informative talk presenting new ideas and concepts while sharing insights into his research.

For my Phoenix Rising followers, Ron did a special shout out to our OMF Correspondent, Ben Howell. Ben is helping to share our Worldwide Tour journey on Phoenix Rising. We are grateful for Ben’s support. He has a very special role at OMF and a very special place in the Davis/Dafoe family. (Pictured below.)

By all accounts, Ron’s talk on why a molecular approach to MECFS is key for our goal of better understanding and treatment of MECFS, gave everyone in attendance a great deal of hope for a brighter tomorrow. He was quoted as saying, “ME/CFS is an invisible illness and I’ll do anything to make it visible.”

As a personal and enjoyable way of sharing the news from the conference, as well as a glimpse into his own research, Ron took a few minutes today to record a brief video that we will share through OMF’s e-news. If you are not already receiving our news in your personal mailbox, please visit our website and register. Keeping you informed with open and collaborative information is my goal.

As I prepare to say good-bye to London, I am reminded of the importance of each and every day. I am grateful that our conference attendees were not hurt by the senseless violence in the city. My heart goes out to those families who have suffered the loss or injury of a loved one. We are reminded, each day is precious. Make the most of it.

Stronger together,

Linda

 

[Research 1st]

The Americans at the London IVIME conference was in effect the (British V2.0) demonstrating to the British (V1.0) how to do ME research in Britain!

How ironic, but very very necessary in such times of universal research treachery where 'fatigue' is designed to encapsulate a life destroying disease.

If we didn't have the Americans to save us, who else would? No one.

Thank you once again, to those at the OMF who care and who let their intellect mix with curiosity instead of the hatred for patients pollute the well as the rest of Europe is used to.

 

[Ben H]

June 7: Antwerp – Belgium (Day 14)


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 I can sincerely relate to them as a parent of a sick daughter.

Gunther De Bock, who helped to organize my visit, introduced Wake Up Call Beweging first and presented an overview of the current ME/CFS situation in Belgium. He reported that there are about 30,000 registered patients, which is probably only the tip of the iceberg. Of the 30,000 patients, only about 5,000 receive disability benefits. Patients face the same problems with credibility, proper healthcare services, and a growing frustration of nothing being done to help them just like in so many other countries.

Gunther officially opened the conference by playing an ME/CFS documentary that had been shown on Belgium national TV 20 years ago. We were all shocked that all these years later, Belgian patients still face so many difficulties despite the advocacy work of patient organizations in this country. As Belgium is the seat of the European Union, this was very painful to hear. Gunther underscored in his speech that he believes that organizations like OMF will change the narrative for patients and that answers on a research level will inspire governments and doctors to finally listen and take action.

During my speech, I emphasized that my husband Don and I started OMF to uniquely fast-track research, to open the dialogue between ME/CFS researchers, and to encourage openly sharing data. I also stressed that both Dr. Davis and I are on a path for a cure. We see the “parents’ movement” we are building with OMF as a priority because we believe the passion of parents is the key to advancing research and government. Dr. Davis, Don, and I deeply feel the frustration of patients and parents that things have moved too slowly. We are determined to change that.


I was very honored to award Els Crick and Gunther De Bock from Wake Up Call Beweging our OMF Certificate of Appreciation for their incredible work in ME/CFS, and for coordinating this event.


Don and I spent time with our Dutch friend, Rob Wijbenga and his Belgian colleague, Eddy Keuninckx. They attended the event to report on behalf of the ME Global Chronicle. It was really nice to be able to catch up with them. On behalf of the ME/CFS community, I want to thank them both for all that they do with the Chronicle and for patients around the globe.

After the Belgium conference, our hosts organized an intimate fundraising dinner where Don and I were able to spend time with 20 patients and enjoy some great Belgian food and drinks.




We left Antwerp with a warm feeling. All our hosts have been so incredibly welcoming, well organized, and supportive since we launched our Tour of Hope in January. We thank Gunther, Els and all their colleagues for this incredible event. We thank you for the Belgian pralines we were given as a farewell gift. I am afraid that these chocolates won’t make it all the way to Norway. My next talk is in Oslo. These are way too good not to finish them by Monday!

Thank you to those we have already visited for all of the heartfelt email comments OMF is receiving in response to our Tour and visit at the IiME in London: “Dear Dr. Davis, you are bringing a ray of hope to the hopeless. I pray you find answers. I pray the world finally wakes up to this devastating disease” and, “It’s so fantastic to see all of you together! We have hope for the future! Thank God!”

With shared hope for all,

 

[Ben H]

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 conference in a large auditorium at the Oslo University Hospital, Rikshospitalet. There were over 200 people in attendance. I spoke following Dr. Katarina Lien, MD, PhD (Oslo University).



Dr. Lien (pictured) spoke in Florida at the 12th IACFSME conference (2016) on her findings that blood lactate increases more rapidly after an exercise challenge in patients with ME/CFS. Last night her talk focused on exercise intolerance and possible metabolic disturbances in ME/CFS, and she theorized as to whether ME patients have a basic disturbance in their energy metabolism.


I am very grateful to all those who attended my talk, and especially for this touching feedback we received: “I was present at your talk tonight, and oh my it was so uplifting! To hear about your projects gives me great hope for the future. My most heartfelt thank you’s to you and the entire OMF team.”

Norway is also home to our newest Scientific Advisory Board members, Dr. Øystein Fluge and Dr. Olav Mella (pictured below) (University of Bergen, Haukeland University Hospital). We are very honored and grateful that they accepted our invitation. Dr. Ronald W. Davis, Director of our Scientific Advisory Board and Director of the Stanford Genome Technology Center, recently said, “We are honored that these scientists are joining our team to end ME/CFS. I have tremendous respect for their work. I work very closely with our Scientific Advisory Board and look forward to creating a new partnership with them. These scientists have each made significant contributions to ME/CFS and related fields, and are committed to helping accelerate our research.”


Drs. Mella and Fluge will join our Collaborative Team Meeting and Community Symposium on the Molecular basis of ME/CFS along with 32 other experts in August (10, 11) for research meetings followed by the community symposium (August 12) where you as a patient can meet our scientists in person and hear first-hand the progress being made and future plans! To register and find more information, please visit: https://www.omf.ngo/community-symposium/


We hope to share more news and impressions from Oslo, including a video recording made by the Norwegian ME Association. I am now preparing for my talks in Sweden. I sincerely thank Rune Hoddevik, Trude Schei, Bjorn Wold (pictured) and so many others for their incredible organization and warm welcome in Oslo. I truly enjoyed visiting your beautiful country and its warm inhabitants.

Welcome to Team OMF!

With hope for all,

 

[Ben H]

The Strength of Support Groups– June 9

OMF’s End ME/CFS Worldwide Tour: European Visit Update


On my travels through EuropeI 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 hundred to a few thousand. Not only havethose groups done a great job in organizing all the conferencesI have been invited to but they are extremely important for the local ME/CFS community. Today I would like to share some of the advantages of belonging to such groups and thethings that stood out to me when talking to patients and organizers in Europe.


First off, for patients it is important to feel a sense of belonging, of being part of a global community, especially since I feel that social isolation and credibility are one of the major problems for patients and their families. When members attend the meetings or are connected online, they are among people who understand their illness and the implications of it on so many levels. In addition,these groups are a great source of information and help. All of us know the feeling of not knowing whom to turn to for help and not being understood. In these support groups, patients share a lot of useful informationand for those that are too sick to attend, they can join the discussion online or by phone.


Support groups give support on so many levels: clinically valid information on the disease itself; names of supportive medical practitioners in the area; validation (being believed, being heard); emotional, practical and social support. Most groups organize interesting events, invite specialists, have monthly gatherings, share information by monthly brochures and areon social media.


The sense of belonging that these groups provide can therefore be very valuable for the ME/CFS community, and we are so grateful for it. Many patients are not only socially isolated, having lost friends and been alienated from family, but many are also physically alone, with no partner or children. Belonging to a social network or community is extremely important for every human being – ithelps us to thrive. So please join me in expressing OMF’s gratitude to the wonderful community organizations that provide much-needed hope and support to patients, parents, scientists, and doctors worldwide!


Warmly,
Linda

 

[Ben H]

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,

 

[Ben H]

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 was touched that she presented me with a pair of hand-made socks. She makes these for bed-ridden patients who commonly experience cold feet. What a sweet gesture. After the event she shared with me, “I found your speech extremely interesting and it really brought hope to us all. You are doing such a great job!!!” The feeling was very mutual. The RME group is doing fantastic things to support patients including Susanne’s dedication and these great socks.

I also had the great pleasure to finally meet in person Cecilia Ekhem, our Motivational Monday master poet and photographer. Cecilia inspires us every Monday with her fantastic poetry and pictures. In addition, Cecilia has personally raised and donated over $5,000 to OMF by writing and selling her inspiring poetry. From our entire OMF family: Thank you Cecilia!

The next day, Jenny Lundgren of RME and I met with Dr. Anna Lindquist and Emilie Karlsson at the ME/CFS Clinic Stora Skondal. I had the pleasure to tour and learn about how patients are evaluated and helped at the Stockholm clinic. With no evidence-based treatments available, the goals are to help patients handle their illness, reduce symptoms and prevent crashes. The clinic physicians do understand that this is truly a biological disease, but they express the need for published treatment trials for ME/CFS-specific treatments to patients.

Stockholm was my last talk in Europe, and it’s time to go home. I have learned a lot, met wonderful people, and received a lot of support. Many patients have told us that this tour has given them a lot of hope. I could not have asked for anything better than that! In the coming days, I will update you all with some reflections on my End ME/CFS Worldwide – European Tour of Hope.

This has been a truly inspiring experience.

With hope for all,

 

[Ben H]

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 task OMF has. Also, I felt so much warmth, closeness and drive in my contacts with our European friends. These impressions I will never forget.


















From my encounters and the dozens of emails we received, I was thrilled to hear how happy and appreciative people were to meet face-to-face, get firsthand research updates, see our progress, and have their questions answered. It gave them hope and a vision for the future where there was desperation before. Our message of hope, fast-tracking research for answers, treatments and a cure seemed to resonate well. We will be sharing a video of my talks shortly.



I am excited to continue our End ME/CFS Worldwide Tour of Hope in the USA this fall. We will also continue our blogposts from September on with weekly useful OMF/Partner updates and information.



We are also extremely happy about the major progress that was announced after my visit to the Isle of Man and Northern Ireland regarding better services and management for ME/CFS adult patients and children. These developments highlight how powerful advocacy can be.

And speaking of powerful, it was truly inspiring to learn about the great work of national ME/CFS/FM organizations and local support groups in Europe. They are not only incredibly valuable in the sense of belonging to a community and the support the participants receive, but they are also an excellent way of sharing useful information about the disease. I encourage all patients and caregivers to sign up at their local groups in Europe and elsewhere. We don’t have many of these local support groups in the USA yet, but I am hopeful that will change.

I would like to encourage all our Team OMF supporters to share our information on your social media accounts and to send us any useful information you would like us to share as well. Our International Liaison Sara (sara@omf.ngo) is looking forward to collaborating with you. From now on, we will have a French version of our newsletters and other languages will follow soon. Sign up today!.

Next on the horizon is the meeting we are planning with Dr. Ron Davis’ team at Stanford University in August. First, there will be a two-day scientific Collaborative Team Meeting with over 30 experts that we are bringing together from all over the world! On August 12, we would like to invite you to our Community Symposium on Stanford campus, which will be open to everyone who wants to meet with our scientists in person and be updated on the latest research, progress made, and future plans! We will live-stream and record this event.



On July 17, Dr. Ron Davis will celebrate his birthday. We encourage the community to donate in his honor. All donations for Dr. Davis’ birthday will support the Collaborative Team Meeting and Community Symposium.

We promise to keep sharing exciting news and hope around the world. We will do our very best to lead the way to end ME/CFS. I hope Team OMF will continue to grow to help us realize our shared dream. Together we are so much stronger.

Finally, my husband Don and I, together with our OMF colleagues, want to express our gratitude to the European organizers for their incredible work and warm welcome, and to all of our European friends for the supportive emails. Thank you from the bottom of my heart. I know what my task is and I know we are working for YOU. I pledge I will continue this fight until a cure is found.

With hope for all,