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

Simone said:
For any non-EU citizens wanting to sign Evelien’s petition to support the EU resolution, ME Advocacy Network Australia will be collecting signatures from today until Fri Feb 28.

To sign, please email the following to meadvocacynetworkaustralia@gmail.com

  • Name
  • Address (including country)
  • Email address
  • Signature (screenshot or scanned image)
Personal details sent to us will only be seen by the couple of people who are collating the signatures into the petition document, and won’t be shared anywhere except with Evelien. We’ll delete all personal details we collect (including the petition document) once the petition document has been delivered to Evelien.
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Excellent! Greatly appreciated.
 
Simone said:
For any non-EU citizens wanting to sign Evelien’s petition to support the EU resolution, ME Advocacy Network Australia will be collecting signatures from today until Fri Feb 21.

To sign, please email the following to meadvocacynetworkaustralia@gmail.com

  • Name
  • Address (including country)
  • Email address
  • Signature (screenshot or scanned image)
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Done.
 
It seems that the next meeting of the Committee on Petitions will go ahead as planned on 30 April. The Draft Motion for a Resolution on additional funding for biomedical research on Myalgic Encephalomyelitis is mentioned in this update on the EU website and appears as number five on the agenda. https://www.europarl.europa.eu/comm...e-on-petitio/product-details/20200423CAN54722

We're cautiously optimistic that the vote in this subcommittee will be successful, but if people could contact their members of parliament in the Committee of Petitions (PETI) and ask them the vote for the draft motion for a resolution that would be greatly appreciated. Many thanks to the people who already did.

You could ask them to support: Resolution - PE 646.806 - Draft Motion for a Resolution on additional funding for biomedical research on Myalgic Encephalomyelitis (2020/2580(RSP))

Many thanks in advance,
 
Are you hoping them to commit a figure and if so multi millions ? Given that individually European governments are behind America, Australia, Canada etc In putting in money, getting significant funds from a central source could be transformative to the continent .
 
How it describes the illness

ME/CFS is a debilitating chronic multisystem disease of unknown aetiology whose symptoms, severity and progression are extremely variable;
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I like what I'm seeing in this document. There seems to be a minor error however.

whereas according to the Commission’s answer of 30 August 2019 to Petition No 0204/2019, ME/CFS is diagnosed for around 24 million people worldwide but this is considered to be only 10% of the total ME/CFS population;
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Looking good. Clear language and this is especially important:
whereas under Article 35 of the Charter of Fundamental Rights of the European Union everyone has ‘the right to benefit from medical treatment under the conditions established by national laws and practices’, while other international human rights instruments, including the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of Persons with Disabilities, recognise or refer to the right to health or elements of it, such as the right to medical care;
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There is simply no way to argue that the rights of ME patients to benefit from medical treatment have not been knowingly denied, leading to well-documented disastrous outcomes. Ongoing for decades, requiring to make up for this neglect by not only ramping up but making up for decades of neglect and willful maligning.
whereas the patients’ community feels deprived and ignored by public authorities and society as a whole, and legitimately asks for greater awareness and additional funding to support progress in research; whereas patients denounce being victims of stigmatisation as a result of poor knowledge of this disease; whereas the stigma surrounding the rights of persons with ME/CFS and the psychological distress associated thereto, which has a dramatic impact on individuals, families and society and on every aspect of citizens’ lives, is too often poorly recognised;
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This is the direct outcome of the ME-BPS model. This outcome was predicted and it was easily predictable. All of this could have been avoided, it was the product of choices made by people with no stakes in the outcome and neither knowledge, will nor ability to actually deliver on their outlandish promises. This discrimination is not random or unfortunate, it was largely created, amplified and maintained by medical and public health institutions, making it a moral and legal necessity to revert this disaster of choice.
whereas children and young people afflicted with ME/CFS could potentially see their access to education hampered;
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Definitely not could. We know this for a fact. Neglecting a serious disease has predictable consequences and there is no excuse to be found here, it has been confirmed for years that children and teenagers do contract ME and that health care has largely been a harmful but willful participant in this disaster.
Calls on the Commission to recognise the special challenges faced by researchers working on diseases of unknown cause, such as ME/CFS, and to ensure that despite these difficulties biomedical research on such diseases is given fair access to the funding provided by Horizon Europe;
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This is important. We see this issue with the NIH, that treating ME as one of many diseases, ignoring its long-held (and ongoing) status as an overtly discriminated disease, leads to little change. It isn't enough to say "do something", it has to be "and actually mean it", it has to take into account the awful history of this disease and the blatant disregard for its patient population.

Bit unfortunate that the timing did not allow the resolution to include COVID language, but it should be communicated as being extremely relevant, even timely.
 
Today is the last day to contact your MEPs. Below is a mail you can copy and paste, just replace everything between brackets. You can find the mails of MEPs from your country who sit on the PETI committee here: https://www.europarl.europa.eu/committees/en/peti/home/members

Google Translate or DeepL should be able to translate the mail decently well.

No mention of COVID19 unfortunately for the sake of not making the mail too long.

Dear M./Ms [MEP Name],

As a patient who has suffered from myalgic encephalomyelitis for [XX] years, I would like you to support the draft motion for a resolution on additional funding for biomedical research on this disease (2020/2580(RSP)) which will be voted by the PETI committee on Thursday 30 April.

Myalgic encephalomyelitis is a debilitating neurological disease that affects more than 2.2 million Europeans [, of which 0.005 * YourCountryPopulationInMillions million YourCountryInhabitantName]. The permanent disability that it causes leads to economic losses in the tens of billions of euros every year at the European scale, and it isolates patients from society, many of whom are housebound or bedbound.

Though recognized by WHO since 1969, there is currently no medical treatment for myalgic encephalomyelitis and its biological root is yet to be determined. Often unknown in the medical and scientific fields due to the absence of education and funding, its diagnosis, appropriate medical care for patients and the progress of biomedical research are severely lacking in the European Union.

The draft motion for a resolution follows a successful petition which has been signed by over 13000 Europeans, making it one of the most supported petitions to date. For patients and their carers, this resolution is the only hope for biomedical treatments; it provides the EU an opportunity to shine by helping them through its leadership in biomedical research.

I know that I can count on your sensitivity to these issues to vote in favor of the draft motion 2020/2580(RSP).

Sincerely,

[FirstName LastName]
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Press release from European Parliament:

Petitions MEPs raise concerns over underfunding of EU research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in a resolution adopted on Thursday.

In a draft resolution adopted today with 30 votes in favour and none against, Petitions MEPs call for additional EU funding to advance research on diagnostic tests and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).


Underfunding of biomedical research into Myalgic Encephalomyelitis is unjustified, say MEPs

ETA: Tweet from PETI Committee Press if you want to like/retweet/comment

 
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