Scientists call for more European research into ME/CFS | European ME Coalition statement | 10 June 2020

June 10, 2020

Brussels, 10 June 2020 

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. 

ME/CFS is a long-term, debilitating illness that causes extreme exhaustion, poor concentration and memory, unrefreshing sleep, and many other symptoms.

“The most characteristic feature is a worsening of symptoms following exertion,” says Evelien Van Den Brink, a Dutch patient who has suffered from ME/CFS for 22 years, since the age of 14.

EMEC co-founder Evelien Van Den Brink has submitted petition No 0204/2019 on a request for funding for biomedical research on Myalgic Encephalomyelitis. The petition has received strong support from the ME/CFS community and has been signed by 14.000 people

Because there is no cure for ME/CFS and its pathology remains poorly understood, Evelien submitted a petition to the European Parliament, asking for more scientific research into the condition.

“More science is the only way forward,” Evelien says. “I’m almost completely bed-bound and I know fellow patients who are even worse off. We cannot let another generation suffer from this horrible illness.” 

The petition has been signed 14,000 times and resulted in the first-ever resolution on ME/CFS in the European Parliament.

“These patients have been ignored for far too long,” says Pascal Arimont, one of the members of Parliament who strongly supports the resolution.

“There is currently no diagnostic test for ME/CFS because we know so little about the underlying pathology. In the US, Australia, and Canada, governments have invested substantial funds in ME/CFS research. Europe is running behind, so we urgently need to take action.”

An estimated two million European citizens suffer from ME/CFS.  

Today, the upcoming resolution received support from an open letter signed by 115 researchers and scientists worldwide.

The letter stresses that ME/CFS “has long been a neglected area in medicine” despite its high societal burden and economic costs.

ME/CFS is not rare and it is highly debilitating,” says Professor Jonas Bergquist, who recently formed the ME/CFS Collaborative Research Center at Uppsala University, Sweden. 

“It often starts after a viral infection and we don’t really know what the mechanisms are for post-viral fatigue. Neuroinflammation and potentially autoimmune reactions may be parts of the explanation. More research is needed so that we get a better understanding of the disease.”  

“A key priority is to develop a diagnostic test for ME/CFS to increase the accuracy of diagnosis,” Dr. Carmen Scheibenbogen, a Professor at Universitätsklinik Charité Berlin and one of the first signees of the letter, explains.

“We hope to get a better understanding of the disease mechanism and eventually, an effective treatment. ME/CFS is one of the great challenges for modern medicine but I’m confident that a scientific breakthrough is possible.”  The open letter and full list of signatories is available to download HERE.

Evelien spoke about her petition on the floor of the European Parliament earlier this year. You can view part of her moving speech HERE.

Press statement issued by the European Parliament on 18 June 2020

Myalgic Encephalomyelitis: MEPs call for more funds for research into complex illness 

  • An estimate of 2 million Europeans affected by the disease 
  • ME/CFS is still poorly understood and consequently, underdiagnosed  
  • Increasing awareness is crucial to advance recognition of the illness and to improve lives of patients  

Parliament wants to increase EU funding in order to advance research on diagnostic tests and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

In a resolution adopted on Wednesday with 676 votes in favour, 4 against and 8 abstentions, the European Parliament calls for additional EU funding for research on ME/CFS and the prioritisation of projects focused on biomedical research.

This comes after Parliament has received a number of petitions raising concerns over the absence of treatment and insufficient funding for research related to the disease that affects an estimate of 2 million people within the EU.

Support for biomedical research 

“Myalgic encephalomyelitis is a chronic neuro-immune disease which affects many people, but unfortunately little is known about its causes and possible cure. We want to improve the everyday lives of patients and their families who are suffering and at risk of social exclusion.” said Dolors Montserrat (EPP, ES), Chair of the Petitions Committee.

“By adopting this resolution, Parliament gives voice to patients’ concerns and supports their legitimate requests for greater awareness and funding for research. We urge the Commission to allocate additional funds for EU biomedical research on ME/CFS, in order to quickly develop diagnostic tests and ensure patients have access to effective treatment.”

Promoting cooperation 

The resolution calls for more European and international cooperation on research into ME/CSF, in order to speed up the development of objective diagnostics standards and treatment. In addition, the Commission should look into the feasibility of an EU fund for prevention and treatment of ME/CFS, suggest MEPs.

Raising awareness 

Due to insufficient knowledge among healthcare providers and absence of appropriate testing, ME/CFS is still poorly understood and as a result, underdiagnosed. Poor knowledge also can lead to stigmatisation and psychological distress, remind MEPs. The resolution emphasises the lack of recognition and awareness on this type of diseases and calls on the Commission and member states to launch information and awareness campaigns among health professionals and the public.

Background information

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity and progression are extremely variable. The absence of treatment and insufficient funding for research on the disease, which affects an estimate of 2 million people in the EU, was already highlighted in several questions to the Commission and petitions from citizens. The economic burden of the disease across Europe was estimated to amount to EUR 40 billion each year.

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