On 1 December 2021, the Committee on Petitions of the European Parliament (PETI) held a second discussion of petition 0204/2019 on biomedical research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A full recording of the meeting can be found below.
Evelien’s speech
The Vice-Chair of the Committee on Petitions, Tatjana Ždanoka, opened the discussion. She introduced co-founder of the European ME Coalition (EMEC), Evelien Van Den Brink. Evelien had submitted the European petition on ME/CFS and had given a speech before the Committee on Petitions in 2019. In the following year, the European Parliament responded by adopting a resolution that calls for more biomedical research on ME/CFS. In December 2021, Evelien was invited to make a contribution again to give an update on the current situation.
Evelien highlighted the lack of concrete results since the resolution was adopted in June 2020, saying: “Things are moving very slowly and, frankly, it is not clear in which direction.” She contrasted the inaction of the European Commission with the positive initiatives taken in the United States, Australia, and Canada to support ME/CFS research: “It would be a shame if there was nothing moving at the EU level.” She stressed the importance of including the patient voice in the scoping study the Commission promised to conduct.
Evelien also clarified how EMEC explored if ME/CFS could be included in one of the European Reference Networks (ERN). Unfortunately, the responsible services have not taken up the initiative. “We have contacted many people and services, hoping they could assist. But to our disappointment, this led to nothing.” Evelien highlighted that although there are no effective treatments for ME/CFS, knowledgeable experts can do a lot for patients. “Actively taking away the stigma by education, and stopping harmful treatments, would undo some of the damage we’ve had to endure for decades on top of the devastation of the disease. “
Lastly, Evelien stressed that many patients with long COVID may go on to develop ME/CFS: “The neglect of ME and related post-viral fatigue syndromes has left us unprepared for the long-term consequences of the COVID-19 pandemic.” She added that ME/CFS has an economic impact of approximately 40 billion euros a year. “Taking action is the sensible thing to do. But most of all, it is the human thing to do.”
Evelien ended her speech by addressing the European politicians and officials: “Right now, ME is a life verdict. For us, it continues to be a tough battle and we cannot do this alone. Please, do not let the hope that you gave us perish.”
A full transcript of Evelien’s speech can be found here.
The response of the European Commission
Ms. Dolors Montserrat, Chair of the Committee on Petitions, thanked Evelien and gave the word to the representative of the European Commission, Ms. Catherine Berens.
Ms. Berens said: “The Commission acknowledges that myalgic encephalomyelitis/chronic fatigue syndrome imposes a heavy burden on patients and their families and recognizes that the lack of specific diagnostic tools and treatments to tackle this serious condition is a matter of concern.”
Ms. Berens argued that the EU has supported ME/CFS research in the past and referred to the following projects:
- Help4ME focused on correcting gut microflora imbalances in ME/CFS patients with probiotics.
- Project DISCOvERIE is studying the causative mechanisms of irritable bowel syndrome, a common comorbidity of ME/CFS.
- Mastfast studies mast cell dysregulation which, according to the commission, is also observed in ME/CFS.
- EUROMENE, a COST Action that supported a network of researchers and clinicians addressing gaps in ME/CFS knowledge.
- The VirA twin project encourages collaboration between the University of Riga and three other centers in the field of viral-induced autoimmunity, which may also be a factor in ME/CFS.
- Other projects dedicated to pain or fatigue could also indirectly provide some insight into ME/CFS, according to the Commission.
- Ms. Berens also highlighted the research efforts taken to study long COVID and its sequelae. Several projects are supported in that respect, such as Ochestra and the CoVICIS project.
EMEC reviewed these projects and disagrees that these can be seen as biomedical research on ME/CFS as the resolution recommends. Our analysis can be found here.
However, Ms. Berens added that “Despite these investments, we recognize the underrepresentation of the ME/CFS area in research projects while there seems to be a lack of scientific evidence hampering the development of diagnostic and therapeutic options.” She added that this could also be the case for other conditions such as Lyme disease and low back pain.
To address this issue the European Commission is initiating a scoping study under Horizon Europe that will identify diseases of high public relevance that are relatively under-researched like ME/CFS. It should address the gaps in robust scientific evidence and put forward reasons why these conditions are poorly studied. It will help to set out research priorities for the coming Horizon Europe work programs. One important aspect of the scoping study, Ms. Berens said, is that it should include different types of stakeholders including patient representatives. The call for tender is currently being finalized and according to Ms. Berens, the Commission expects the study to commence in early 2022.
Comments by Members of the European Parliament
Next, Ms. Dolors Montserrat, Chair of the Committee on Petitions, gave the floor to Members of the European Parliament (MEPs) to contribute to the discussion.
Radan Kanev (Christian Democrats, Bulgaria) clarified that he was speaking on behalf of his Austrian colleague, Alexander Bernhuber, but that he fully shared his position on this subject. Kanev called ME/CFS a “serious disease” and said that the main issue is that people need to get diagnosed so that we get a clearer picture of the impact of the illness. “Very often this is a hidden disease. People often don’t know that they suffer from it. They know they are ill, they’re sick, they have huge health problems but they are not diagnosed.” MEP Kanev pleaded to keep the petition open and added: “The health of our citizens always has to be our greatest interest which is why no savings should be made in the research of new diseases.”
Cristina Maestre (Socialists, Spain) said that ME/CFS causes a lot of suffering and that patients feel ignored in the health system. She argued that there is not enough knowledge about this disease and that this results in patients being stigmatized by the rest of society. People often don’t understand the symptoms of ME/CFS. MEP Maestre said: “We need a research project that is properly funded and has the right kind of logistical support.” She also highlighted the gender aspect because illnesses like ME/CFS that mainly affect women, are often understudied in scientific research. MEP Maestre said that we need a stronger commitment from the European Commission and the Member States in the fight against ME/CFS. “We cannot allow that once again we abandon these patients, that they become invisible.”
Jordi Cañas (Liberal, Spain) who previously hosted an event to highlight the anniversary of the ME/CFS resolution, gave a powerful speech. He said: “Here the European parliament has a resolution and has indicated to the Commission what it should do. And I think it is of grave concern that the European Commission has not given any follow-up to this specific request from the European Parliament.” He argued that the Commission needs to fulfill the mandate conferred upon it by the European parliament. MEP Cañas also highlighted that because of long COVID, the number of patients with ME/CFS seems to be increasing which is an ideal opportunity to carry out broader research. “We cannot abandon and leave behind all of these people.” He said the Commission needs to carry out a proper analysis of this disease so that it can be included as a new category in work programs of Horizon Europe.
Margrete Auken (Greens, Denmark) said that people are quite frustrated because there isn’t any progress being made. She asked for the Commission to state clearly how they are going to be targeting funding for this specific disease. She asked for a kind of promise, a commitment from the Commission to make sure that resources will be made available. When all comments were made at the end of the meeting, MEP Auken promptly asked for the representative of the Commission to respond to the concerns expressed.
Ádám Kósa (Non-attached member, Hungary) said: “It is true that not enough attention has been paid to this disease … according to science it is not a disease that can be treated today so those patients who actually suffer from ME/CFS basically have to live with it.” MEP Kósa, who used sign language to give his speech, said that he himself has to live with a disability, fighting many obstacles and that ME/CFS patients are fighting a similar battle.
Next, Evelien thanked the members of the European parliament for their powerful contributions. She said she hoped that ME/CFS patients can count on their continuing support.
Chair Dolors Montserrat responded promptly: “Of course, with the whole PETI Committee we are going to work on this petition and we’re not going to leave you and all the patients alone.” PETI decided to keep the petition open and demanded of the Commission that they comply with the resolution that was adopted almost unanimously at the plenary session last year. The Commission has set out a new program, ‘EU4Health’, that has ten times as much budget compared to individual health projects. She urged the Commission to make the most of this EU4Health program in order to comply with the resolution that was adopted by the European Parliament. Chair Montserrat stressed that PETI will be monitoring what is going on.
At the request of MEP Auken, chair Montserrat gave the floor to Ms. Berens of the European Commission to respond and clarify if money has been allocated to ME/CFS research this year.
Ms. Berens agreed that this is an important topic but repeated that Horizon Europe does not focus on particular diseases. With the scoping study, the Commission hopes to better understand the reasons why diseases such as ME/CFS are not researched as they should. It aims to identify research priorities that address the patients’ needs and should help determine the topics of future work programs.
Afterward, chair Montserrat closed the discussion and moved on to the next topic of the PETI meeting.
Conclusion
EMEC is very grateful for the strong support shown by the MEPs who spoke during the meeting. The Parliament’s backing gives us the leverage we need to keep fighting for the 2 million ME/CFS patients in Europe.