European Parliament questions

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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9 November 2017
"Subject: Funding of research on ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects more than one million people within the EU. This illness is characterised by persistent and excessive fatigue, post-exertional malaise, flu-like symptoms and cognitive impairments. Most sufferers are unable to lead a normal life. Those affected are predominately women.

Many of the symptoms of ME/CFS overlap with those of Lyme disease and fibromyalgia.

There are no established biological diagnostic tests for ME/CFS, nor are there any treatments.

Scientists from Newcastle and Cornell Universities have recently published data showing that mitochondrial energy production is impaired in ME/CFS, while mental health remains normal. Scientists at Stanford University have also recently published data showing activation of immune cells (clonal expansion) in ME/CFS, which is similar to that found in Lyme disease.

These studies highlight the need for biological research into ME/CFS. Recently, the American National Institute for Health (NIH) allocated funding to biological ME/CFS Research Centres and single ME/CFS projects.

1. Will the Commission review the recently published biological ME/CFS studies and fund expanded studies which include Lyme disease and fibromyalgia?

2. Will the Commission review the recent allocation of NIH funding for biological ME/CFS research and set out how it proposes to fund ME/CFS research?"
 
Valentijn said:
I hate it when groups make it sound like ME is all about Lyme or pretty much the same thing as fibromyalgia. How can anyone answer a question which itself contains assumptions that can't be accepted?

Any idea who asked these questions?
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Alex Mayer (S&D) I think. I can't access the answer:
http://www.europarl.europa.eu/sides/getDoc.do?type=WQ&reference=E-2017-006901&format=XML&language=EN

eta:
http://www.europarl.europa.eu/meps/en/185637/ALEX_MAYER_home.html
Female MEP(Labour) from UK (High Wycombe England)
 
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Another question :
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Parliamentary questions

101k
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17k
28 August 2018
E-004360-18
Question for written answer E-004360-18
to the Commission
Rule 130
Rory Palmer (S&D)

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Subject: Myalgic encephalomyelitis: recognition by the World Health Organisation and Commission support for research and training
Answer in writing

Will the Commission make formal representations to the World Health Organisation (WHO) in support of the WHO officially recognising myalgic encephalomyelitis (ME) as a ‘serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients’ (as defined by the Institute of Medicine in 2015)?

Furthermore, will the Commission support further and accelerated biomedical research to develop improved diagnostic methods and treatments for ME?

Will the Commission undertake to support efforts to ensure appropriate and improved medical education and training for health and social care professionals working with ME patients?

http://www.europarl.europa.eu/doceo/document/E-8-2018-004360_EN.html?redirect

here is the answer

EN E-004360/2018 Answer given by Mr Andriukaitis on behalf of the European Commission (1.11.2018)
The World Health Organization (WHO) International Classification of Diseases (ICD-10)1 already includes Benign myalgic encephalomyelitis in code G93.3 for Postviral fatigue syndrome. The draft ICD-11 maintains this disease in code 8E49 Postviral fatigue syndrome. The Commission works with the Member States on the development of the ICD. However, as an observer at the WHO, the Commission does not intend to make formal representations regarding official recognition of any disease.

The EU Framework Programme for Research and Innovation – Horizon 2020 (2014-2020)2 – provides many opportunities for supporting research on myalgic encephalomyelitis. These efforts aim to advance basic understanding of the disease, provide better diagnostic tools, and develop new and improved therapeutic interventions. Information on the current funding opportunities is available via the Participant Portal3. The Commission also supports the COST programme for European Cooperation in Science and Technology. COST recently created an integrated network of researchers working on myalgic encephalomyelitis – EUROMENE4.

As regards education and training of health and social care professionals, in accordance with Articles 165 and 166 of the Treaty on the Functioning of the EU5 Member States are responsible for the content and the organisation of their education systems and vocational training. At the same time, in accordance with Article 168 of the Treaty, Member States are also responsible for the organisation and delivery of health services and medical care.

1 http://apps.who.int/classifications/icd10/browse/2016/en#/G93.3
2 https://ec.europa.eu/programmes/horizon2020/
3 http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/index.html
4 http://www.euromene.eu/
5 http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:12012E/TXT&from=EN
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http://www.europarl.europa.eu/doceo/document/E-8-2018-004360-ASW_EN.pdf
 
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Subject: Chronic fatigue syndrome

Answer in writing

Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is a severe disease affecting more than one million people in the European Union, 80% of whom are women.

New research shows that ‘phenylalanine can be used as a potential biomarker for the diagnosis of CFS’(1) .

This is a blood-based diagnostic test for ME/CFS.

Is the Commission aware of this new research?

Will it make funding available for the research and development of diagnostic tests for ME/CFS?

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(1) https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract

thread here:
https://www.s4me.info/threads/a-new...an-micro-spectroscopy-2018-morten-et-al.5445/

answer:
E-006124/2018

Answer given by Mr Moedas

on behalf of the European Commission

(30.1.2019)

The Commission is aware of the study on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) referred to by the Honourable Member.

Although to date no specific projects on diagnosis/treatment of ME/CFS have been supported by the EU Framework Programmes for Research and Innovation, the GLORIA project1 is investigating the pathophysiology of chronic pain conditions including fibromyalgia, while the project RTCure2 aims to improve diagnostics and treatment of the rheumatic and other autoimmune diseases largely associated with fatigue and pain.

Horizon 2020, the EU Framework Programme for Research and Innovation (2014-2020)3, continues to provide opportunities for research funding on ME/CFS, fibromyalgia, as well as other neuro-immunological disorders, including better diagnostics and care. The bottom-up approach of the Horizon 2020 calls for proposals provides applicants with freedom in the choice of their investigations. The subsequent programme Horizon Europe4 will continue to support research to improve health of the European citizens.


1 Understanding chronic pain and new druggable targets: Focus on glial-opioid receptor interface https://cordis.europa.eu/project/rcn/110940/factsheet/en

2 Rheuma Tolerance for Cure https://cordis.europa.eu/project/rcn/211964/factsheet/en

3 https://ec.europa.eu/programmes/horizon2020/

4 https://ec.europa.eu/info/designing...ramme/what-shapes-next-framework-programme_en
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http://www.europarl.europa.eu/doceo/document/E-8-2018-006124_EN.html
 
Moderator note: This petition is discussed on this thread:
https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-2#post-200831

PETI-CM-640684_EN
30.8.2019

NOTICE TO MEMBERS

Subject: Petition No 0204/2019 by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on Myalgic Encephalomyelitis

1. Summary of petition

The petitioner refers to her poor health conditions, as she suffers from Myalgic Encephalomyelitis (ME). Such disease, sometimes called Chronic Fatigue Syndrome, is a devastating chronic disease that causes dysfunction of the neurological, immune, endocrine and metabolism systems. The petitioner states that ME affects approximately two million EU citizens, with huge economic and societal costs, thus representing a hidden public health crisis. The petitioner calls on the European institutions to make sufficient funds available for biomedical research into ME, in order to deliver a diagnostic test, clinical trials and effective treatments for this disabling disease.

2. Admissibility

Declared admissible on 14 June 2019. Information requested from Commission under Rule 227(6).

3. Commission reply, received on 30 August 2019

Petition 0204/2019

The Commission recognises the importance of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that is diagnosed for around 24 million people worldwide, which is considered to be only 10% of the whole ME/CFS population. Although frequently triggered by infection, the cause of CFS is not yet known. Researchers look for its source in the guts, which are inhabited by billions of microorganisms and form a complex ecosystem with profound impact on the whole body. Imbalance of gut microflora, damaged gut barrier functions and dysfunctional immune responses are known in CFS and shared with another disease - Irritable Bowel Syndrome (IBS), which frequently accompanies ME/CFS. Horizon 2020, the EU Framework Programme for Research and Innovation (2014-2020)1, supports research on neurological disorders of different etiology, as well as research on pain. Recently, a project Help4Me (evidence-based probiotic for Chronic Fatigue Syndrome)2 has been funded under the SME3 Instrument funding mechanism. Funding has been provided to develop a product GutMagnific™, an evidence-based probiotic scientifically designed and shown to be effective in correcting the gut microflora disbalance – a source of CFS and Irritable Bowel Syndrome (IBS) symptoms. The novelty of the product lies in the unique combination of five lactobacilli strains with evidence-based efficacy and shows a life-changing promise to a severely underserved population of CFS patients.

Moreover, Horizon 2020 funds the GLORIA project4 which is investigating the pathophysiology of chronic pain conditions including fibromyalgia, while the project RTCure5 aims to improve diagnostics and treatment of the rheumatic and other autoimmune diseases largely associated with fatigue and pain. The current EU Framework Programme for Research and Innovation continues to provide opportunities for research funding on ME/CFS, fibromyalgia, as well as other neuro-immunological disorders, including better diagnostics and care. One of the key elements of Horizon 2020 was the development/promotion/advancement of scientific excellence using a variety of funding schemes, including bottom-up approaches. This flexibility gives excellent science the opportunity to select the most appropriate funding mechanism. Horizon Europe6, building upon Horizon 2020, will continue to support research in a similarly flexible manner to improve the health of European citizens.

Conclusion

Research on ME/CFS and the related diseases has received support through the EU Framework Programme for Research and Innovation and future calls will provide further opportunities to fund such research.





1 https://ec.europa.eu/programmes/horizon2020/



2 https://cordis.europa.eu/project/rcn/223054/factsheet/en



3 Small and medium-sized enterprise.



4Understanding chronic pain and new druggable targets: Focus on glial-opioid receptor interface https://cordis.europa.eu/project/rcn/110940/factsheet/en



5 Rheuma Tolerance for Cure https://cordis.europa.eu/project/rcn/211964/factsheet/en



6https://ec.europa.eu/info/designing...ramme/what-shapes-next-framework-programme_en
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Parliamentary questions

39k
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9k
11 March 2020
E-001545/2020
Question for written answer
to the Commission
Rule 138
Alex Agius Saliba
Answer in writing
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Subject: Myalgic encephalomyelitis/chronic fatigue syndrome


Living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) can be very difficult. Extreme tiredness and other physical symptoms can make carrying out everyday activities difficult and can affect a patient’s mental and emotional health.

Therefore, it is important to address the human and socio-economic consequences linked to the rising number of individuals living and working with these long-term disabling chronic conditions. These conditions have an impact on the sustainability and continuity of a patient’s work and employment.

1. Can the Commission clarify whether it will allocate additional funding and prioritise calls for proposals focusing on biomedical research into ME/CFS that aim to develop and validate a biomedical diagnostic test and effective biomedical treatments to cure or alleviate the effects of the disease?

2. What is it doing to foster cooperation and the exchange of best practices among the Member States as regards screening methods, diagnoses and treatments?

3. What steps is it taking to create an EU prevalence register of patients affected by ME/CFS?
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https://www.europarl.europa.eu/doceo/document/E-9-2020-001545_EN.html

Parliamentary questions

38k
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16k
9 June 2020
E-001545/2020
Answer given by Ms Kyriakides
on behalf of the European Commission
Question reference: E-001545/2020


Pursuant to Article 168(7) of the Treaty on the Functioning of the European Union(1), EU action in the field of public health must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care. Thus, screening, diagnosis and treatment of Myalgic Encephalomyelitys/Chronic Fatigue Syndrome (ME/CFS) fall within Member States’ responsibility.

As a key mechanism for dialogue with national health ministries, the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases(2) sets priorities for cross-national good practice learning. As of yet, ME/CFS has not been identified as a priority for this purpose by this expert group and therefore the Commission has no specific plans to this effect at present.

The prevalence of ME/CFS is not monitored at EU level. However, European Network on ME/CFS (EUROMENE)(3) should deliver specific information on it. In addition, recent estimates from the European Environmental Agency suggest approximately 6.5 million people across Europe suffer from chronic high sleep disturbance(4). Overall fatigue is one of the most widely (by 35%) reported health problems among the EU working population(5).

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(1) http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?uri=CELEX:12012E/TXT&from=EN
(2) https://ec.europa.eu/health/non_communicable_diseases/steeringgroup_promotionprevention_en
(3) http://www.euromene.eu/, COST Action funded under the Horizon 2020 Research and Innovation Programme.
(4) ‘Environmental noise in Europe — 2020’, see https://www.eea.europa.eu/publications/environmental-noise-in-europe
(5) Sixth European Working Conditions Survey — Overview report (2017 update), see https://www.eurofound.europa.eu/sites/default/files/ef_publication/field_ef_document/ef1634en.pdf
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https://www.europarl.europa.eu/doceo/document/E-9-2020-001545-ASW_EN.html
 
Subject: Additional funding for research on Myalgic Encephalomyelitis (ME/CFS)
On 18 June 2020, the European Parliament adopted Resolution 2020/2580(RSP) on additional funding for biomedical research on Myalgic Encephalomyelitis (ME/CFS) with the aim of developing and validating a biomedical diagnositic test and effective treatment that can cure the disease or alleviate its effects.

The lack of biomedical research and coordination regarding this chronic disease, which affects women in particular, poses the main obstacle for people suffering from the disease, since it is not known what causes it nor are there any recognised diagnostic or treatment protocols. Moreover, this group is particularly vulnerable to COVID-19 and experts consider that the number of sufferers may increase significantly as a result of the pandemic (1) .

In light of the above:

1. How does the Commission intend to ensure funding for research into ME/CFS through the Horizon Europe and EU4Health programmes?

2. Will the Commission put forward a proposal for the funding of research into diseases of unknown cause and rare diseases through a specific fund dedicated to their diagnosis, prevention and treatment?

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(1) https://www.omf.ngo/2020/04/26/tracking-covid-19-patients
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https://www.europarl.europa.eu/doceo/document/E-9-2020-003764_EN.html
 
1 July 2020

In June, Parliament adopted by a large majority a resolution calling for increased funding for myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). It is estimated that around two million people suffer from ME/CFS in the EU alone. Researchers point out that further cases of ME/CFS are to be expected in connection with the coronavirus pandemic, and that patients who have been diagnosed with Covid-19 in particular face chronic fatigue, which can make it impossible to perform basic tasks and significantly reduce quality of life. In view of the above:

1. Will the Commission answer Parliament’s call and allocate additional funding and prioritise calls for projects specifically focused on biomedical research into ME/CFS, with a view to the development and validation of a biomedical diagnostic test and of effective biomedical treatments that can cure the disease or alleviate its effects?

2. Does the Commission intend to allocate additional funding to research into the long-term effects of Covid-19 and the link between the virus and ME/CFS, including in the context of potential subsequent waves of infection, and to an analysis of the actual impact on the European economy of the number of myalgic encephalomyelitis cases in the EU?
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https://www.europarl.europa.eu/doceo/document/E-9-2020-003909_EN.html
 
Another parliamentary question about the resolution

26/06/2020 - Question by Chris MacManus, GUE/NGL https://www.europarl.europa.eu/doceo/document/E-9-2020-003779_EN.html
Myalgic encephalomyelitis (ME) affects around 25 000 people on the island of Ireland and two million across Europe.

In June 2020 the European Parliament passed a resolution on myalgic encephalomyelitis.

Can the Commission give a breakdown of the actions it now intends to take since the resolution was passed by Parliament?
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There were also two MEPs that we know of that made "written explanations of vote", a short comment supportive of the ME/CFS resolution.

Peter Jahr (Germany, EPP) https://www.europarl.europa.eu/meps/en/96772/PETER_JAHR/home
Ich freue mich, dass die Entschließung mit so großer Zustimmung angenommen wurde. Weltweit leiden rund 17 bis 24 Millionen Menschen an ME/CFS und davon etwa zwei Millionen in der EU. Deshalb müssen hier Kräfte vereint und die biomedizinische Forschung unterstützt werden, um den vielen betroffenen Menschen und deren Familien zu helfen.
Diese Entschließung zeigt mal wieder, wie wichtig der Petitionsausschuss des Europäischen Parlaments ist, da er so nah wie kein anderer Ausschuss an den Bürgern ist und deren Problemen, Sorgen und Nöten eine Plattform gibt
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Demetris Papadakis (Cyprus, S&D)https://www.europarl.europa.eu/meps/en/124692/DEMETRIS_PAPADAKIS/home
Υπερψήφισα την πρόταση για μια ολοκληρωμένη, φιλόδοξη και μακροπρόθεσμη ευρωπαϊκή στρατηγική για την αναπηρία για την περίοδο μετά το 2020, η οποία θα αντικατοπτρίζει την πολυμορφία των ατόμων με αναπηρία και τις ανάγκες τους, θα περιλαμβάνει φιλόδοξους και σαφείς στόχους, συμπεριλαμβανομένου ενός κοινού ορισμού σε επίπεδο ΕΕ για την «αναπηρία» σε όλους τους τομείς πολιτικής της ΕΕ, θα ενσωματώνει σε όλες τις πολιτικές και όλους τους τομείς τα δικαιώματα όλων των ατόμων με αναπηρία, θα αντιμετωπίζει τις πολλαπλές και διατομεακές μορφές διακρίσεων που τα άτομα με αναπηρία μπορεί να βιώνουν και θα περιλαμβάνει μια ευαίσθητη προσέγγιση όσον αφορά τα παιδιά. Η έκθεση τονίζει τη σημασία να εξασφαλιστεί υψηλό επίπεδο υπηρεσιών και βοήθειας για τα άτομα με αναπηρία και είναι, ως εκ τούτου, αναγκαίο να καθοριστούν ελάχιστα πρότυπα σε επίπεδο ΕΕ προκειμένου να διασφαλιστεί η κάλυψη όλων των αναγκών των ατόμων με αναπηρία.
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Peter Jahr (Germany said:
I am pleased that the resolution was adopted with such great approval. Around 17 to 24 million people worldwide suffer from ME / CFS, of which about two million in the EU. For this reason, forces must be united here and biomedical research must be supported in order to help the many affected people and their families.
This resolution once again shows the importance of the European Parliament's Committee on Petitions, as it is closer to the citizens than any other committee and provides a platform for their problems, concerns and needs
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Demetris Papadakis (Cyprus said:
I voted in favor of the proposal for an integrated, ambitious and long-term European disability strategy for the post-2020 period, which reflects the diversity of people with disabilities and their needs, with ambitious and clear objectives, including a common definition at the level of "Disability" in all EU policy areas, will integrate in all policies and in all areas the rights of all people with disabilities, address the multiple and cross-sectoral forms of discrimination that people with disabilities may experience and involves a sensitive approach to children. The report emphasizes the importance of ensuring a high level of services and assistance for people with disabilities and it is therefore necessary to set minimum standards at EU level in order to ensure that all the needs of people with disabilities are met.
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18 August 2020

E-003764/2020
Answer given by Ms Gabriel
on behalf of the European Commission
Question reference: E-003764/2020
A better understanding of diseases and their drivers, including pain and the causative links between health determinants and diseases, has been identified as one of the priorities of Horizon Europe. Therefore, scientists and other actors with a specific interest in Myalgic Encephalomyelitis (ME/CFS) should have many possibilities to support their research and their goals in improving the condition of patients.

It should be noted that the topics to be addressed for funding under Research and Innovation programmes are generally broadly conceived without focusing on any specific disease or condition. With this approach, researchers dispose of wider opportunities within the area of their specific interest. This approach also assures that excellence, the major criterion to be selected for funding, is met by the proposals submitted. Moreover, their evaluation is carried out by independent experts.

The proposed EU4Health programme is still under negotiation and designed to fund policy relevant actions rather than research. One of its main proposed objectives is to strengthen health systems, including through increased integrated and coordinated work among Member States and sustained implementation of best practices. Priorities for the latter are set via the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases(1). As of yet, ME/CFS has not been identified as a priority for this purpose.

Finally, the Commission would like to recall that ME/CFS cannot be classified as a rare disease.
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Agius Saliba’s question is answered as well, although the response is rather disappointing.

EDIT: to clarify this response dates back from June 2020 so it is not new.
Pursuant to Article 168(7) of the Treaty on the Functioning of the European Union(1), EU action in the field of public health must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care. Thus, screening, diagnosis and treatment of Myalgic Encephalomyelitys/Chronic Fatigue Syndrome (ME/CFS) fall within Member States’ responsibility.

As a key mechanism for dialogue with national health ministries, the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases(2) sets priorities for cross-national good practice learning. As of yet, ME/CFS has not been identified as a priority for this purpose by this expert group and therefore the Commission has no specific plans to this effect at present.

The prevalence of ME/CFS is not monitored at EU level. However, European Network on ME/CFS (EUROMENE)(3) should deliver specific information on it. In addition, recent estimates from the European Environmental Agency suggest approximately 6.5 million people across Europe suffer from chronic high sleep disturbance(4). Overall fatigue is one of the most widely (by 35%) reported health problems among the EU working population(5).
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Question: https://www.europarl.europa.eu/doceo/document/E-9-2020-001545_EN.html

Answer: https://www.europarl.europa.eu/doceo/document/E-9-2020-001545-ASW_EN.html
 
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The question by Chris MacManus has now also received a response from the European Commission (with pretty much the same content):
E-003779/2020 Answer given by Ms Gabriel on behalf of the European Commission (2.9.2020)

The non-legislative Resolution1 focuses on additional funding for biomedical research on Myalgic Encephalomyelitis (ME).

Insofar as this Resolution calls for Commission action in the field of public health, any such action must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care2 . This includes screening, diagnosis and treatment.

The Commission supports best practice exchange among Member States. As of yet, ME has not been identified as a priority for this purpose by the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases3 . Moreover, the Steering Group does not address clinical guidelines.

The Commission intends to support research and innovation projects dealing with ME. It has proposed Horizon Europe (HE)4 , the strategic planning of which foresees a substantial health component, including, among other elements: living and working in a health-promoting environment; ensuring access to sustainable and high-quality health care; tackling diseases and reducing disease burden. It includes as one of its priorities better understanding of diseases and their drivers, covering pain and the causative links between health determinants and diseases. Therefore, scientists and other actors with a specific interest in ME should have many possibilities to support their research in developing specific diagnostics tools and treatments to improve the condition of patients.
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Source: https://www.europarl.europa.eu/doceo/document/E-9-2020-003779-ASW_EN.pdf
 
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