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A New International Newsletter on ME/CFS Is Launched

  [ 25 votes ]   [ Discuss This Article ]
By Rob Wijbenga • www.ProHealth.com • June 28, 2014


A New International Newsletter on ME/CFS Is Launched
By Rob Wijbenga

The story of the ME Global Chronicle

The ME Global Chronicle, a free, bimonthly digital magazine grew out of the Dutch government-subsidized project, Science to Patients

Science to Patients started on November 2, 2011 with a webinar given by the Belgian clinician and researcher Dr. Kenny De Meirleir. The webinar was based on questions from patients. Dr. De Meirleir continued with the project to give nineteen more short talks.

After Dr. De Meirleir's talks, a Dutch cardiologist, Dr. Visser, took over. As there are very few experts on ME/CFS in the Netherlands and Belgium, the webinars were conducted in English, but subtitled in Dutch. We have featured many noted researchers and clinicians in the field. This year the webinars included the British doctors Nigel Speight and Charles Shepherd, as well as the well-known British researcher Julia Newton from Newcastle University, UK. In September, Leonard Jason from DePaul University, Chicago, will take over. All of the participants have offered an opportunity to ask questions in chatwing-sessions, which allows for even greater access to these experts.

As it was important to reach as many patients and patient advocates as possible, a mailing list was composed of scientists, researchers, patient advocates and organizations from all over the world, in the hope that they would help disseminate the links to the webinars. To date, the webinars have been viewed 140,000 times.

In the autumn of 2013, the coordinator of the project Science to Patients, Rob Wijbenga from the Netherlands, noted that important initiatives, fundraisers and research were going on all over the world, but on an independent basis. He thought it might be a good idea to collect news from all over the world and send out a newsletter to all the addresses on the Science to Patients list. The idea was greeted with enthusiasm, but cooperation was rather scarce. He was on the verge of giving up when three others offered to help. The Belgian ME-patient Eddy Keuninckx took up the challenge and worked hard to design the beautiful layout. Our first issue was released in January 2014.

Currently David Egan from Northern Ireland is on the editorial staff, as well as Janice Roseingrave from New Zealand. (She now lives in Brussels.)

Increasingly,  individuals and organizations are contributing articles, which is exactly what the magazine is meant for. Connecting and sharing are the two slogans in the coat of arms of the ME Global Chronicle. The magazine is intended to be a shared initiative from and for everybody fighting for the recognition and treatment of the horrendous plague, ME.

Let’s hope it will grow to become a true international resource for spreading global news and information about ME.

Written contributions can be sent in Word to contribute@let-me.be

For a free subscription contact subscribe@let-me.be




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