Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Meeting New and Old Friends in the Netherlands

Dear Friends,

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 KissMEGoodbye group 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

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo