ME Action: The EU committee on petition is preparing a resolution on ME

Sly Saint · Jun 10, 2020

don't know if this has been posted yet

Open letter on funding for biomedical research into Myalgic Encephalomyelitis
in the European Union

Myalgic Encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS), is a chronic, debilitating illness characterized by extreme exhaustion, cognitive dysfunction, and post-exertional malaise. [1] ME patients are frequently unable to work, study or participate in social activities.
Some are house- or bedbound and fully dependent on the care of family members.
In the United States (US) the direct and indirect economic costs of ME have been estimated at 17 to 24 billion dollars annually. In the European Union (EU), the impact on society is expected to be even higher with approximately two million EU citizens suffering from ME.
Despite its high economic costs, ME has long been a neglected area in medicine. There is currently no effective treatment and the estimated prognosis is poor. Many patients remain ill for decades.
Although biomedical research is making progress, the pathology of the illness is still poorly understood.
Because of the high disease burden, more funding for biomedical research into ME is urgently needed.
We would like to express our support for a special provision in the Horizon research program to address the lack of funding for neglected chronic diseases such as ME.
In the US, Australia, and Canada, governments have earmarked funding for ME research, a strategy that will attract new scientists and will further develop the field. Biomedical research into ME is taking place at prestigious research institutes including Stanford, Cornell, and Columbia Universities.
A new ME research collaboration has recently been formed at Harvard-affiliated hospitals. A key priority is to develop a diagnostic test for ME to increase the accuracy of diagnosis and provide reliable outcomes in treatment trials.
The EU, unfortunately, is running behind. As a global forerunner in healthcare and medical research, it is notable that the EU is currently funding little to no biomedical research into ME. Some of the rare European research projects into ME had to be financed by charities, patients and their loved ones.
We recommend that the EU align itself with international developments by issuing a long-term commitment to invest in biomedical research into ME. A special provision in the Horizon research program to address the underfunding of neglected chronic diseases could help remove some of the barriers for European scientists to study ME. Hopefully, this will lead to a better understanding of the
disease mechanism and eventually, an effective treatment for this devastating illness.
Sincerely,
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(pdf)
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwjNxZjtnvfpAhWyVRUIHcUeD5Y4FBAWMAN6BAgFEAE&url=https://cdn.lifepr.de/a/eff4db13310e91c3/attachments/1048798.attachment/filename/Open-Letter-on-funding-for-biomedical-research-into-ME-in-the-EU.pdf&usg=AOvVaw1y9n-OmK-Z1EMetVUwDWOj

Andy · Jun 10, 2020

Press release – Scientists call for more European research on ME/CFS,

More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones.
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https://europeanmecoalition.com/press-release-scientists-call-for-more-european-research-on-me-cfs/

Joh · Jun 10, 2020

Many thanks to the volunteers at the European ME Coalition and everybody else involved, impressive work and cooperation!

Thanks to the amazing organizing of the EMEC, today many patient organizations in Europe and the USA posted at the same time about the open letter and press release. Article with links for German speaking folks: https://www.mecfs.de/offener-brief-von-115-wissenschaftlerinnen-an-das-europaeische-parlament.

sebaaa · Jun 17, 2020

Eager to see the results of this...
https://twitter.com/user/status/1273001460377300993

ME/CFS Skeptic · Jun 18, 2020

Thread about the press release here: https://www.s4me.info/threads/press...l-for-more-european-research-on-me-cfs.15471/

Unfortunately, the EMEC press release wasn't picked up by major news outlets but it did appear in some smaller ones. Thanks to the national patient organisations who made this possible.

Medical facts - Europees Parlement stemt over onderzoek Chronisch Vermoeidheidssyndroom

Nationale Zorggids - EU Parlement stemt over onderzoek chronisch vermoeidheidssyndroom

Avrotos - Honderd wetenschappers pleiten voor meer onderzoek naar 'vermoeidheidsziekte' ME/CVS

europapress - Los científicos piden más investigación europea sobre la Encefalomielitis Miálgica o SFC

Bundesverband Deutsche Stiftungen - Wissenschaftlerinnen und Wissenschaftler fordern mehr europäische Forschung zu ME/CFS

Gesundheitsjournal24 - Wissenschaftlerinnen und Wissenschaftler fordern mehr europäische Forschung zu ME/CFS

Life PR - Wissenschaftlerinnen und Wissenschaftler fordern mehr europäische Forschung zu ME/CFS

Feel free to add news outlets if you see it appear somewhere. Hopefully tonight the EU parliament will adopt the ME/CFS resolution.

Kalliope · Jun 18, 2020

https://twitter.com/user/status/1273514402873053186

Andy · Jun 18, 2020

https://twitter.com/user/status/1273521593843621888

Andy · Jun 18, 2020

A useful thread from Michiel explaining some of the detail of the resolution
https://twitter.com/user/status/1273535639229792258

ME/CFS Skeptic · Jun 18, 2020

There's a separate thread about the vote on the EU parliament here: https://www.s4me.info/threads/membe...or-more-funds-for-research-into-me-cfs.15544/

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ME Action: The EU committee on petition is preparing a resolution on ME

Sly Saint Senior Member (Voting Rights)

Andy Committee Member

Joh Senior Member (Voting Rights)

sebaaa Established Member (Voting Rights)

ME/CFS Skeptic Senior Member (Voting Rights)

Kalliope Senior Member (Voting Rights)

Andy Committee Member

Andy Committee Member

ME/CFS Skeptic Senior Member (Voting Rights)

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ME Action: The EU committee on petition is preparing a resolution on ME

Sly Saint Senior Member (Voting Rights)

Andy Committee Member

Joh Senior Member (Voting Rights)

sebaaa Established Member (Voting Rights)

ME/CFS Skeptic Senior Member (Voting Rights)

Kalliope Senior Member (Voting Rights)

Andy Committee Member

Andy Committee Member

ME/CFS Skeptic Senior Member (Voting Rights)

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