Interview with #MillionsMissing France: Rally in Bourges

#MillionsMissing France (MMF) has been busy. This month, in tandem with ApresJ20 Covid long France and adapted physical activity experts, the association addressed the French National Authority for Health (HAS) requesting, as they have since 2020, that the HAS focus of aspects of their diagnostics policy on Post-Exertional Malaise (PEM), a hallmark symptom for fatiguing illnesses like ME/CFS and often also for Long COVID.

Last month, MMF led a fruitful demonstration in the town of Bourges. Below is an interview with MMF Founder Ms. Chantal Somm on the outcome and purpose of that event, which saw over one hundred organizers and attendees involved.

What is the history of #MillionsMissing France? 
The association was created in 2018 because in France, severe pwME (i.e. people with Myalgic Encephalomyelitis) were completely invisible and unseen by health authorities. MMF values the appropriate scientific oversight of M.E. by all governing bodies and institutions. Our objective is to spread M.E. awareness and resources on a large scale — to patients and their allies — through our website and social media.

Why choose to campaign in the town of Bourges? 
Bourges was an awareness-promoting demonstration; it is an example of a way to connect in a hands-on, timely manner with ill pwME across the country. We had already organized similar events in Rennes, Grenoble, Marseille, Bordeaux, Toulouse, Périgreux, etc. The objectives being to increase discussion of Myalgic Encephalomyelitis (ME) in local media, to also increase potential networks for pwME in the local area. 

These centers get chosen because they contain patient-activists and strong allies, oftentimes family members. In Bourges, for instance, Alix (severe pwME) & family were pillars of that rally. We had radio broadcast / press coverage leading up to the event. Over one hundred people were mobilized for the day of the demonstration. 

What amount of effort goes into organizing this kind of event? 
It’s a hefty job because one needs to oversee all aspects of this type of event in all its details. Building banners and signs, documents for speech-making, event flyers, other materials (tent post, tables, sheets, amplifier…). A member of MMF is tasked with coordinating these responsibilities. Overall, it took about three months to organize a demonstration like Bourges, to get all volunteers to interconnect, to solicit local media, etc. We are already in the planning stages of next year’s May 12th (a.k.a. International ME/CFS and Fibromyalgia Awareness Day)!

Have health authorities taken notice?
This demonstration was a call for awareness for the larger public, not a call-to-action for health authorities. Still, we have been corresponding with health authorities in order to implement a diagnostics and care protocol for ME (which does not exist in France). We were invited in December 2020 to an HAS working group focused on the proper intake and care of Long COVID sufferers. That opportunity allowed us to negotiate for the recognition of PEM and to caution on the dangers of graded-exercise therapy (GET). We regularly make mention of these negotiations during our demonstrations.

Opportunities are always varied based on local authorities, who do not always grant us access to the locations we ask for, or who limit our actions. For instance in Bourges, we were allowed to sell t-shirts, but not to collect donations.

What was the general feeling and emotion during the event, how long did it run? 
The event lasted two hours in a relaxed, friendly atmosphere. We were hopeful, we heavily anticipated this demonstration! We furnished red t-shirts for all of the volunteers. Some of these t-shirts go on sale while another batch gets lent out and returned for our next demonstrations. Cake and fruit juice were offered to the public, red balloons signed “#MillionsMissing France” were blown for the kids. Volunteers interacted with onlookers and gave out flyers. At the stand, patients answered more complicated questions surrounding the illness. A doctor attended, providing educational information for the medical aspects. It is important for us to appear like a determined group, but also to bring joy, laughter, and humor to the mix. We try as much as possible to include musical/artistic partners such as, for example, the Batukada youth troop, Troupe BatukaVI.


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A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

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