European Parliament questions

[rvallee]

The question by Chris MacManus has now also received a response from the European Commission (with pretty much the same content):

Source: https://www.europarl.europa.eu/doceo/document/E-9-2020-003779-ASW_EN.pdf

This basically reads: we've always failed so why change now? Or put another way: why fix something that's clearly broken when it's been broken for so long?

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.

Ah, well, I guess that's it then. They "should". And criminals simply "should" stop committing crimes and the climate "should" stabilize by itself. You "should" be recovered by now. There is no reason symptoms "should" continue past two weeks. Lots of things that shouldn't be clearly are and the other around.

Well, ME "should" have been solved years ago but ruthless jerks chose otherwise, imposed their stupid ideology on millions, causing death and suffering on a massive scale. So what desperately ill people "should" do when the only people legally allowed to solve that problem refuse to do so on invalid grounds? I guess we "should" protest but we literally can't and when we do the replies are that this "shouldn't" be happening so it clearly isn't a problem.

 

[Sly Saint]

P-005482/2020
Answer given by Ms Gabriel
on behalf of the European Commission
(4.12.2020)

The Commission is aware that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS), a chronic, complex condition, imposes a high burden on patients and their
families.
The Commission has put forward an ambitious health programme, EU4Health1. EU4Health’s
objectives include the strengthening of health systems through increased integrated and
coordinated work among Member States, and the sustained implementation of best practices,
both relevant for the improvement of clinical management of ME/CFS.
As regarding Horizon Europe, the upcoming research and innovation programme, a better
understanding of diseases and their drivers has been identified as one of the priorities of its
health cluster. Therefore, scientists and other actors with a specific interest in ME/CFS
should have many possibilities to obtain support for their research and their goals in better
understanding the causes of this disease and develop diagnostic tests and effective treatments
to respond to patients’ needs.
Moreover, the Commission services are currently working closely with the Member States in
order to address under-investigated conditions, of which ME/CFS is a paradigmatic example,
in the first work programme of Horizon Europe.

https://www.europarl.europa.eu/doceo/document/P-9-2020-005482-ASW_EN.pdf

 

[ME/CFS Skeptic]

Thanks for posting.

This is the response to a question by Pascal Arimont, the Belgian MEP who has taken up this topic and has been most helpful.
Funding for biomedical research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (europa.eu)

 

[ME/CFS Skeptic]

The last part seems to be the most important one:

the Commission services are currently working closely with the Member States in order to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe.

Let's hope this leads to some concrete improvements.

 

[Sly Saint]

20 December 2021

E-005634/2021
Question for written answer E-005634/2021
to the Commission
Rule 138
Günther Sidl (S&D)

Subject: Chronic fatigue syndrome (CFS/ME)


An estimated 2 million people suffer from chronic fatigue syndrome (CFS/ME) in the European Union. Exceptionally rapid physical and mental exhaustion are the main symptoms of this chronic disease, which in extreme cases can lead to extensive disability and the need for long-term care. Although the condition is internationally recognised as a disease in its own right, the medical profession’s understanding of it remains limited, meaning it often fails to be diagnosed. We adopted a resolution to provide funding for further research into this disease on 18 June 2020. In this context, I have the following questions:

1. What has been done to date as regards research funding?

2. How does the Commission intend to raise awareness and improve research in this area in future?

3. Is there any global coordination/collaboration between health authorities and pharmaceutical companies in the area of drug research, and what could be improved in this area?

https://www.europarl.europa.eu/doceo/document/E-9-2021-005634_EN.html

 

[Wyva]

Parliamentary questions

27 June 2022
O-000026/2022
Question for oral answer O-000026/2022
to the Commission
Rule 136
Pascal Arimont, Dolors Montserrat, Radan Kanev, Cindy Franssen, Sirpa Pietikäinen, Frances Fitzgerald
on behalf of the PPE Group

Subject: Lack of tangible results following Parliament’s resolution of 18 June 2020 on funding for biomedical research on ME/CFS and the fight against long COVID

On 18 June 2020, the European Parliament adopted a resolution calling for additional funding for biomedical research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and measures to improve treatment for ME/CFS patients in Europe.

The leading scientists in the field agree that long COVID will lead to a large increase in the number of ME/CFS patients, as the condition often has a post-infectious onset. ME/CFS could become the biggest long-term health problem of the pandemic.

However, almost two years since the resolution was adopted, the Commission has not produced any tangible results in the spirit of Parliament’s text. Despite the Commission having announced a ‘scoping study’ to investigate how ME/CFS and other under-researched conditions linked to long COVID can be included in future Horizon Europe work programmes, there is still no official start date for this. Another important pillar to tackle the disease would be European support for research funding on biomarkers, clinical research centres and clinical trials in cooperation with the pharmaceutical industry. Moreover, consideration should be given to including ME/CFS within the European Reference Network for Rare Neurological Diseases (ERN).

In the face of a public health crisis, with 2 million ME/CFS patients in the EU prior to the pandemic and long COVID leading to tens of thousands of new patients every month, the Commission needs to act.

1. What is the Commission’s evaluation of its response to Parliament’s resolution of 18 June 2020 and when will we have an official start date for the ‘scoping study’?

2. Would the Commission support a European network for biomedical ME/CFS research that could, for example, build on the experiences and knowledge of the existing EUROMENE network and lead to the creation of a European Centre of Excellence for ME/CFS to spearhead the establishment of regional centres in the Member States?

3. Will the Commission support cooperation with the private sector in order to increase the number of clinical trials for ME/CFS and link research on ME/CFS and long COVID?

4. Does the Commission support extending the ERN disease coverage in order to include ME/CFS?

Submitted: 27.6.2022

Lapses: 28.9.2022

https://www.europarl.europa.eu/doceo/document/O-9-2022-000026_EN.html

 

[Dolphin]

Merged thread
FWIW

Spanish

23 diciembre 2022

Sensibilidad química múltiple y encefalomielitis miálgica en el Parlamento Europeo: resultado agridulce de una iniciativa de 2022


Artículo original: https://www.sensibilidadquimicamultiple.org/2022/12/iniciativa-ue-2022-para-sqm-y-em-sfc.html

© Servicio de Información sobre Sensibilidad Química Múltiple y Salud Ambiental



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English translation

December 23, 2022

Multiple chemical sensitivity and myalgic encephalomyelitis in the European Parliament: bittersweet outcome of a 2022 initiative

Artículo original: https://www-sensibilidadquimicamult...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

 

[Kitty]

Interesting. I suppose if they don't have a policy of setting priorities for specific named conditions, then that's probably the best outcome that could be expected. It's really positive that she's drawing attention to ME and that she's had a sympathetic hearing from the parliament, even if there isn't anything concrete at the end of it.

My limited experience of European funding (in a totally different field) suggests that it'd be hard work drafting good bids for ME research. There are few if any avenues where preliminary work has thrown up results promising enough to justify a multi-centre study, and bids seem to do better when they involve collaboration between centres in more than one member state. I suppose one approach might be a from-scratch project, where the object is to set up dedicated teams to identify those promising avenues, but that might need more imagination than is typically on offer.