Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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MEET OMF IN EUROPE! END ME/CFS WORLDWIDE TOUR BEGINS!

Discussion in 'Upcoming ME/CFS Events' started by Ben H, May 22, 2017.

  1. Ben H

    Ben H OMF Correspondent

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    Join OMF’s End ME/CFS Worldwide Tour

    Help spread OMF's message of hope and learn what we are doing to unravel ME/CFS.

    Linda Tannenbaum, CEO/President, is preparing for OMF’s End ME/CFS Worldwide Tour European visit.

    Linda will be presenting an OMF research update, encouraging our global community to take action and to be a part of the solution.

    Our spectacular Scientific Advisory Board, including three Nobel Laureates, are determined to help unravel the mystery of ME/CFS and we all hope that a cure will be found soon.

    In her presentations (with Q & A session), Linda will provide hope to patients and parents/caregivers. In addition, she has scheduled talks with government officials and physicians to raise awareness that ME/CFS is a real, serious disease validated by the United States NIH and CDC.

    We encourage you to join Linda at a program nearby.

    Our End ME/CFS Worldwide European Tour Schedule:
    Open to the public:

    • London, UK: June 2: Invest in ME International Conference: OMF Exhibit Table: Come and see us!
    • Bergen, Norway: June 16: TBD: The Norwegian ME Association
    Not open to the public:
    Become a sponsor of this tour, please donate.

    Find information about our research.
    Please follow us on Facebook or Twitter.

    Invite others to sign up for our newsletter.

    OMF is committed to open and collaborative research. We look forward to seeing you soon to exchange hope, ideas and thoughts to conquer this terrible disease, together.

    -----------------------------------------------------

    It begins! Come and get involved (or family members) if you can. :)

    Thanks guys,


    B
     
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  2. Aroa

    Aroa

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    OMF, dear Linda and members of the Advisory Board !!!

    We appreciate so much your work for us and we know we are in the best hands :heart:
     
    Last edited: May 22, 2017
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  3. Ben H

    Ben H OMF Correspondent

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    END ME/CFS WORLDWIDE TOUR
    Europe Schedule Update


    Dr. Ronald W. Davis will be speaking at the upcoming Invest in ME Research - IiME Patient Day on June 2nd. He will be providing a research update on OMF's Severely ill Big Data Study. In addition, Linda Tannenbaum, OMF CEO/President, Raeka Aiyar, PhD, Director of Communications for the Stanford Genome Technology Center, and Ashley Haugen, Events and Marketing Director for the CFS Research Centre at Stanford, will be hosting OMF's exhibit table.

    The conference is ticket-only and entrance to the conference is only permitted for those with confirmed tickets. The conference is currently sold-out but Invest in ME Research are maintaining a waiting list in case of cancellations and you may apply to the charity to be added to that list.

    We encourage all confirmed conference participants to visit the OMF table.

    Invest in ME Research (IIMER) is a UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME/CFS.

    Thank you for following our tour.
     
    Last edited: May 31, 2017
  4. emsho

    emsho

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    Hey @Ben Howell is it too late to try to organise her to come talk in Scotland?!
     
  5. Tom Kindlon

    Tom Kindlon Senior Member

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    If you don't get a reply quickly, I'd encourage you to contact them directly. I reckon there is a reasonable chance they might be able to fit it in.
     
  6. emsho

    emsho

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    thanks @Tom Kindlon have sent an email, fingers crossed :)
     
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  7. Ben H

    Ben H OMF Correspondent

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    Hi @emsho

    I have forwarded this on for you :)

    Hopefully something may be able to be sorted,

    Thankyou for the interest!


    B
     
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  8. Jo Best

    Jo Best Senior Member

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    The full presentations at the June 2nd public biomedical research conference (see agenda) will be on the conference DVD (along with the private pre-conference evening presentation on the PACE trial by Dr. David Tuller) and it's available to pre-order now at an earlybird extra discounted price: http://www.investinme.eu/IIMEC12-DVD-Order-EB.shtml
     
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  9. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!


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

    May 22: Embarking on Europe!


    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 determined to help unravel the mystery of ME/CFS. As Ben Howell, OMF correspondent on Phoenix Rising, writes on his blog after visiting the Stanford Genome Technology Center: “I left with a message of hope-literally, with Dr. Craig Heller saying,‘We’re gonna figure this out!’”


    Linda will be travelling during the next month through 6 European countries for dozens of presentations to patients, parents and caregivers, including question and answer sessions. She will be giving an OMF research update to presentwhat we are doing to unravel ME/CFS, share hope and encourage our global community to take action and be a part of the solution. In addition, she has scheduled talks with government officials and physicians to raise awareness that ME/CFS is a real, serious disease validated by the United States NIH and CDC.


    We encourage you to join Linda at a program nearby: https://www.omf.ngo/end-mecfs-worldwide-tour/. If you like to become a sponsor of our Tour, pleasedonate.Tofind information about our research.Please follow us on Facebook or Twitter.Invite others to sign up for our newsletter.


    OMF is committed to open and collaborative research. We look forward to seeing you soon in Europe to exchange hope, ideas and thoughts to conquer this terrible disease, together!
     
    Last edited: May 27, 2017
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  10. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!


    Day 1: Isle of Man: May 24:

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


    On Thursday 24th of May,Linda started her European “Tour of Hope”with a very exciting day on theIsle of Man, a beautiful island located in the Irish Sea between Great Britain and Ireland. She had been invited bythe “ME Support Group” to work together in a joint mission for better ME/CFS patient rights.Linda was welcomed by Celia Marshall, Craig Morris and Phil Gawne,hosts and organizers of this visit.


    Linda started her day early with a meeting with the Minister of Health and Social Security, Kate Beecroft andthe Director of Commissioning, Tim Mansfield. The meetings went very well and the Minister and Director said that they would move forward in setting up services for adults and children with ME/CFS. After a short tour of the Parliament Tynwald and House of Keyswith Phil Gawne – a past member of the House of Keys –Linda gave a presentation to 15 members of the House of Keys. The members were very engaged, asked great questions and seemed interested to help patients however they can.


    In the afternoon Linda spend time with patients and their families. She first met with about 12 patients in a “meet and greet”and listened to their hard stories. The patients conveyedto Linda their great appreciation for her visit. At 7.30pm it was time for Linda to give a public presentation to patients and parents/caregivers that lasted about an hour. About 25 people showed up. Her presentation had a great reception and interesting personal questions were asked in the question and answer session afterwards.


    All in all, it was a full andvery fulfilling day and Linda was touched by the warmhearted welcome of Celia, Phil, Craig and many others. Thank you to our Isle of Man ME/CFS friends for their invitation, splendid organization and hosting!Welcome to our Team OMF!
     
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  11. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!


    Day 2: Isle of Man: May 25:

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

    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 Director. The meeting went very well and both understand the disease and are very caring. This meeting was followed by another one with the Children's team – as part of the Mental Health Division - that sees children up to 16 years of age with ME/CFS. Linda and the IOM team met with Director Kate Kirk and Dr.Proudlove and Dr. Kerry,a pediatric physiologist, and talked about what is needed.The OMF Team also discussed the possibility to refer patients to the ME clinic in Liverpool,which understands additionalbiological aspects of the disease. All participantsspent much of their time on this discussion and listenedcarefully to all of our concerns for patients. Team OMF truly hopes that changes will be made and that the availability of teachers to provideaccommodations for school children will improve.


    After those two meetings, Linda had the pleasure of having lunch with two young patients and others before visiting Craig Morris and his wonderful parents in Port St. Mary. Craig is severely ill and homebound. Despite that, he found the strength to connect with the ME support group and together invited Linda to visit the Isle of Man and talk to their government. Linda and Craig spent some enjoyable time together talking about the success of the government meetings and in appreciation that the Minister agreed to put money towards improving ME/CFSservices for patients. Linda was especially touched by Craig’s huge smile despite his disability and suffering.


    Celia (Marshall, chair of the Isle of Man ME support group) and Linda were then interviewed on Manx Radio at the Isle of Man radio station.Once the short 4-minute clip of the interview is ready, OMF will make sure it is shared with all of our supporters. Linda then had an interesting private scientific meeting before going to Celia’s house. Celia was so kind as to organize a lovely dinner for the ME support group members at her home, where Linda was staying, and about 10 people were able to join. Linda went to bed late, enjoying again a full day of successful and inspiring meetings. The morning after she left on her trip to Dublin.
     
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  12. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!


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


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


    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 an independent government that can make changes and hopefully be a model for others to follow. We need evidence-based diagnostics and treatments to get into the mainstream as we do for all. I feel that my trip helped to get the process in motion for better services. The government has agreed to allow disability benefits to patients with an ME/CFS diagnosis without additional assessment. They have agreed to set up additional ME/CFS services for both adults and children. We all felt that my visit made a big difference in elevating the need for all of this and now they are moving forward.


    Celia Marshall,the chair of the local ME support group,is a wonderful person that took over the ME support group 3 years ago when she heard about the illness and that the support group was needed and about to fold. Celia does not have a loved one affected and yet is very passionate about getting proper care for patients. She is an angel and an extremely organized and lovely person. I personally and Team OMF in general are so happy and lucky to have met with her and to be able to work together.


    I am very grateful to have visited and have met such wonderful, caring people and am leaving with the hope of big change ahead for over 350 patients that suffer on this island. I can’t thank our Isle of Man friends enough for their warm welcome and splendid organization. Welcome to our Team OMF!


    Warmly, Linda
     
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  13. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!


    May 26: Meeting with Tom Kindlon in Ireland

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

    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 European Tour.


    Linda said, “for over twenty years, Tom has been home-bound with this horrific disease ME/CFS but at the same time has been the lifeline for many patients, with non-stop information flowing to keep us all up-to-date on the latest ME/CFS news. Vera has kept the Irish ME/CFS Association alive and well and has been incredible with her support. We all had a very nice visit.”


    Tom and Vera gave Linda a warm welcome. “It was lovely to meet Linda. It was very kind of her to call out as I am housebound and won’t able to go to her talk on Sunday May 28th here in Dublin. I have been excited for a good while now by Open Medicine Foundation's work and enthusiasm,” explains Tom. Tom was honored to receive a certificate of merit from OMF for his work on behalf of the OMF patient community.


    Many of the ME/CFS community know Tom Kindlon. Tom is a one-of-a-kind gentleman and scholar, with lots of heart. He serves as the Assistant Chairperson of the Irish ME/CFS Association. Tom studied Mathematical Sciences at Trinity College Dublin, giving him the background to analyze and publish papers on the reporting of harms associated with ME/CFS graded-exercise therapy. Tom's extensive body of work is on ResearchGate and PubMed. Tom is best known for his extensive analysis, publications and correspondence with ME/CFS researchers, particularly in relation to the PACE Trial.

    Tom has been housebound for over 22 years. He became ill with ME/CFS in February 1989 at the age of 16. “Before becoming ill, I lived a very active life. I participated in whatever sport was going - soccer, table tennis, life-saving, tennis, cricket and cross-country running. All that changed when I became ill with ME/CFS. I can remember how it happened. I developed an infection the day before going on a school trip. I decided to go anyway. We went on an adventure to the west coast of Ireland. We did much canoeing, hiking, abseiling and orienteering. It was cold and rainy throughout the trip, not the place to be when you're unwell. I was ill for many days after I returned. But I was never the same after that.” And that’s “…when in time I became a “spoonie”…someone with ME/CFS or any chronic invisible illness can relate to what that means,” smiles Tom.

    Linda and all of OMF’s supporters want to sincerely thank Tom for his courage, strength, passion, advocacy, humor and all that he is doing for the ME/CFS community!

    @Tom Kindlon :)
     
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  14. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!

    Day 5: Dublin – Republic of Ireland: May 28

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


    On Sunday, May 28th Linda gave aninspiring 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 of speaking after Dr. Rosamund Vallings from New Zealand. Dr. Vallings spoke about the illness, diagnosis and current treatment ideas for about 45 min. Dr.Vallings (MD) has over three decades of experience in the field of ME/CFS and is one of New Zealand’s leading authorities on ME/CFS. She is one of the authors of the 2011 International Consensus Criteria case definition. She was recognized by the Queen in the 2008 New Year’s Honours when awarded the New Zealand Order of Merit (MNZM). Dr. Vallings was also awarded the prestigious international Nelson Gantz Clinician’s Award at the 2016 International Association for Chronic Fatigue Syndrome conference (IACFS/ME) in Fort Lauderdale, Florida. Dr. Vallings has voluntarily served for over 27 years as President of the Associated New Zealand ME Society (ANZMES) and later as Medical Advisor and Committee Member.


    Following Dr. Vallings, Linda spoke for approximately 35 minutes with an additional hour of questions and answers.Patients were especially interested in OMF research updates and the hope they provided. All attendees signed up to receive the OMF newsletter to closelyfollow our progress in the future. To sign up, go to: https://www.omf.ngo/newsletter-sign-up/.


    After the speakers, Vera Kindlon of the Irish ME/CFS Association announced that all proceeds from the Dublin meeting (155€ in total) and an additional 10.000€ from the Association’s research fund will be donatedto OMF to fund research projects. Linda had a very inspiring weekend in Dublin and she was very touched by the warmhearted welcome of Vera, Tom and so many others. Thank you so much to our Irish ME/CFS friends for your warm welcome, splendid organization and 10.155€ in donations! Welcome to Team OMF!
     
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  15. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!

    Day 7: Belfast – Northern Ireland: May 30

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

    Linda Tannenbaum


    On TuesdayMay 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 mein such a warm way during this trip!


    Andy and I arrived at a hotel in Belfast early to meet with Dr. Olav Mella (a new member of the OMF Scientific Advisory Board), Dr. William Weir and Professor David Tuller. After a brief visit, wewent to the Parliament Building, Stormont, where the meeting took place.


    (While in the hotel meeting they were evacuated for "an incident" and stood in the rain a bit before being let back inside. Needless to say, my hair didn’t look as happy anymoreJ.)


    About 40 government officials, patients and physicians attended the talks –as well as my husband Don. Due to prior efforts of several local advocates and government officials, the Northern Ireland government has already designated funds to bring on a half-time physician specifically for ME/CFS!


    I opened the meeting with a presentation entitled, “Research Hope for ME & Fibromyalgia.”Following that,Dr. William Weir, a Consultant Physician in the UK, talked about “Me & Fibromyalgia: History, politics, and the need for change.” Dr.Weir has a longstanding interest in ME/CFS and is Medical Advisor to Hope 4M.E. & Fibro. Although formerly retired, Dr.Weir regularly sees ME/CFS patients privately, and advises on disease management and treatment.

    The next speaker wasProfessor Olav Mella. Dr. Mella is director of the Department of Oncology at Haukland University Hospital in Bergen, Norway. He spoke on “Rituximab, treatment for the future?” Together with his colleague Dr. Øystein Fluge, a researcher and oncologist from the same hospital and another recent addition to our SAB, Dr. Mellais conducting a phase III Rituximab trial in ME/CFS patients.

    David Tuller, PhD(USA) then spoke about “The UK PACE Trial: An exploration of the “evidence” for graded exercise therapy for ME/CFS.” David Tuller works as an academic coordinator at UC Berkeley (public health and journalism) and frequently writes for the New York Times. In 2016 he was recipient of both the IACFS/ME Special Service Award for Outstanding Personal Effort and Contribution, and the Tymes Trust Award for Scientific Journalism.

    Dr. Christine McMaster, consultant in the Public Health Agency of Northern Ireland,closed the meeting with her presentation,“ME & Fibromyalgia Care in Northern Ireland – Recent Developments.”Dr. McMaster is currently supporting efforts to improve health services for ME/CFS patients throughoutNorthern Ireland.

    The meeting was then followed by a long questions and answer session. The audience was very receptive and thankful. Hope 4ME & Fibro offered all attendees a very nice reception after the talks so that everyone could chat. Thank you again Joan, Andy, and so many others for makingmy stay in Northern Ireland unforgettable. Welcome to Team OMF!
     
    Last edited: Jun 1, 2017
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  16. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!

    Jonas Blomberg and Jonas Bergquist of Uppsala University in Sweden. They updated us on their research funded by OMF.

    Raeka, Ron, Bloomberg, Ashley, Berquist, Linda.JPG


    I am here with Dr. Ron Davis who will be speaking at the IiME Patient day on June 2nd. On Wednesday and Thursday, we joined the other 70 or so scientists at the 7th annual Biomedical Research into ME Colloquium (BRMEC7), where Dr. Davis and many others presented and discussed the details of the latest ME/CFS research. Last night we ended with a nice dinner that allowed for more in-depth discussions of the science. On Thursday morning we met with Dr. Olav Mella and Dr. Maureen Hanson over breakfast. These splendid specialists are two of the three latest additions to our Scientific Advisory Board.

    Ron Davis, Maureen Hanson, Olav Mella.JPG


    Joining me and Dr. Davis in London is Raeka Aiyar, PhD, Communications Director for the Stanford Genome Technology Center, and Ashley Haugen, Events & Marketing Director for the CFS Research Center at Stanford. All four of us will be hosting OMF's exhibit table at IIMEC12. We are looking forward to connecting with the patients there personally!


    I encourage all of our European ME/CFS friends and supporters to send us your impressions, comments, and feedback. We want to learn and improve how we share information with you and the larger ME/CFS community. I also encourage you to come and join us in one of the many European meetings still to come. Thank you for following our tour!


    Warmly,

    Linda
     
    Last edited: Jun 4, 2017
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  17. Ben H

    Ben H OMF Correspondent

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    Dream. Believe. Do It…Join Team OMF in Hope!

    Day 9: Meeting friends and collaborators at IiME in London

    OMF’s End ME/CFS Worldwide Tour: European Visit Update: June 1


    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 with Dr. Olav Mella (Norway) and Dr. Maureen Hanson (USA), both new members of our Scientific Advisory Board, to discuss ongoing and future collaborative projects. The day was filled with scientific presentations, formal and informal meetings, and friendly chats. Over lunch, Dr. Davis was interviewed by BBC Radio. We will keep you updated on this interview.

    Ron Davis, Maureen Hanson, Olav Mella.JPG

    In the evening over 20 countries were represented at the preconference dinner, and the fabulous David Tuller was theguest speaker. He gave a wonderful and very passionate talkabout the PACE trial and the harm it is doing to ME/CFS research and patients. Kjersti Krisner introduced David, saying,“We have been waiting for someone to make the sun come through the skies.” Kjersti, who is from Norway, is a fabulous “fighting” mother of three adult children with ME/CFS (one severely ill and bedbound).Through her advocacy work for the severely ill, she is very respected in Norway and throughout Europe. I had the honor of meeting Kjersti at the IiMEC11 last year, where we had a great chat after her passionate heartwarming presentation. This year’s dinner gave Dr. Davis and I the opportunity to meet and greet friends like Kjersti.

    Also here in London is “Marathon Mike”. Mike is organizing and running marathons through 28 European countries. His goal is to raise awareness and funds for ME/CFS research. In his blogMike writes about his European adventures along the road.


    I am very much looking forward to my day tomorrow. The Patient Day will be a great opportunity to reconnect with old friends and make new connections in the ME/CFS community. I am excited to hear their stories and to see the hope that research progress will give them!

    Warmly,

    Linda
     
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  18. Starlight

    Starlight Senior Member

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    Thanks for posting,Ben, it's great to see the optimism and enthusiasm.
     
  19. Ben H

    Ben H OMF Correspondent

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    Major announcement from Northern Ireland following OMF visit

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


    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 and fibromyalgia, including biomedical research, that confirms the very physical nature of these diseases. They expect this information to be distributed within a maximum of 8 weeks after further negotiations with the commissioners and Public Health Agency. This news comes from our friends and supporters from the Hope 4 ME & FM Support group and Mr. Iain DeBoys, Commissioner for ME and Fibromyalgia (a committee of Health and Social Care Board).


    Please stay tuned for updates at our End ME/CFS Worldwide Tour blog or the Hope 4ME & Fibro website.


    Hope 4ME & Fibro NI has shared the following message of hope: “Hope 4 ME & Fibro Northern Ireland, has been bringing world experts and researchers from around the world to N.I. since 2011 to educate decision makers. Effectively it has taken six years to bring us to this welcome and much needed move by the Department of Health. We again thank this year's speakers at our ‘Seeking Solutions for ME and Fibromyalgia' conference,Dr. Mella, Linda Tannenbaum, David Tuller, Dr. W. Weir, Dr. Christine McMaster and the others before them.”


    The Hope 4 ME and Fibro groups are compiling a detailed report on the presentations at their recent 'Seeking Solutions for ME and Fibromyalgia' educational event, held in Stormont government headquarters, Belfast, May 30th 2017.


    On behalf of OMF, I would like to congratulate the Hope 4ME & Fibro group in Northern Ireland for their excellent work in accomplishing this! Thank you again for a wonderful invitation and welcome to join these great experts in your recent conferences.


    It is so exciting to see the increased awareness being translated into better healthcare policies for ME/CFS patients and caregivers!


    Warmly,

    Linda
     
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  20. Ben H

    Ben H OMF Correspondent

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    (This should be inbetween prior posts, apologies)

    Dream. Believe. Do It…Join Team OMF in Hope!

    Day 7: Belfast – Northern Ireland: May 30

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


    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 mein such a warm way during this trip!


    Andy and I arrived at a hotel in Belfast early to meet with Dr. Olav Mella (a new member of the OMF Scientific Advisory Board), Dr. William Weir and Professor David Tuller. After a brief visit, wewent to the Parliament Building, Stormont, where the meeting took place.


    (While in the hotel meeting they were evacuated for "an incident" and stood in the rain a bit before being let back inside. Needless to say, my hair didn’t look as happy anymoreJ.)


    About 40 government officials, patients and physicians attended the talks –as well as my husband Don. We were excited that thechair of the Royal College of Physicians of Northern Ireland was in attendance.Due to prior efforts of several local advocates and government officials, the Northern Ireland government has already designated funds to bring on a half-time physician specifically for ME/CFS!


    I opened the meeting with a presentation entitled, “Research Hope for ME & Fibromyalgia.”Following that,Dr. William Weir, a UK Consultant Physician, talked about “Me & Fibromyalgia: History, politics, and the need for change.” Dr.Weir has a longstanding interest in ME/CFS and is Medical Advisor to Hope 4M.E. & FibroRituximab trial in ME/CFS patients.

    David Tuller, PhD(USA) then spoke about “The UK PACE Trial: An exploration of the “evidence” for graded exercise therapy for ME/CFS.” David Tuller works as an academic coordinator at UC Berkeley (public health and journalism) and frequently writes for the New York Times. In 2016 he was recipient of both the IACFS/ME Special Service Award for Outstanding Personal Effort and Contribution, and the Tymes Trust Award for Scientific Journalism.

    Dr. Christine McMaster, consultant in the Public Health Agency of Northern Ireland,closed the meeting with her presentation,“ME & Fibromyalgia Care in Northern Ireland – Recent Developments.”Dr. McMaster is currently supporting efforts to improve health services for ME/CFS patients throughoutNorthern Ireland.

    The meeting was then followed by a long questions and answer session. The audience was very receptive and thankful. Hope 4ME & Fibro offered all attendees a very nice reception after the talks so that everyone could chat. Thank you again Joan, Andy, and so many others for makingmy stay in Northern Ireland unforgettable.

    Hope 4 ME Linda Speaking.jpg

    Hope 4 ME Speakers Event.jpg
     
    dangermouse, mango, Binkie4 and 6 others like this.

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