🌍 News from Belgium

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In October 2021, Millions Missing Belgique organized an ME awareness webinar for healthcare professionals with the generous participation of Pr Alain Moreau.

12ME has collected funds for ME/CFS research by baking and selling heart-shaped waffles using a family recipe. The event, called a ‘Heart for ME’ was a great success and has become an annual tradition to raise funds for biomedical research on ME/CFS in Belgium.

Lack of adequate care

On December 10, 2021 the 2 Belgian patient organizations 12 ME and Millions Missing Belgique, wrote a letter to politicians who had shown an interest in Long Covid in order to draw their attention to the links and certain similarities between Covid Long and ME, as well as to the lack of adequate care in Belgium.

The letter by can be read in full both in Dutch and in French

New guideline

On January 27 12ME and Millions Missing Belgique have contacted the National Institute for Health and Disability Insurance (RIZIV/INAMI) and asked to provide more information on the current status of ME/CFS guideline.

Currently, there is only one official ME/CFS reference center left in Belgium that receives financial support from RIZIV/INAMI. The center, located at Leuven, maintains an outdated biopsychosocial model of ME/CFS and still proposes graded exercise therapy as treatment on its website. 12ME and Millions Missing Belgique asked to update current guidelines based on the new NICE guidance on ME/CFS. Thus far, RIZIV/INAMI, has not provided a response.

Fundraising

In Belgium, patients have been organizing many different fundraisers to collect money for scientific research on ME/CFS. The patient organization 12ME, for example, sells postcards during the whole year.

The postcards were designed by the Dutch artist Mascha Delena who also donated a painting of hers. They can be ordered here, sending a mail with your details to: info@12me.be