Starting your own fundraising campaigns for more ME/CFS research - how does that work?

Fundraising campaigns for more ME/CFS research make an important contribution to improving the medium-term prospects of the many patients affected. We appreciate every single one of these initiatives - big and small. In this article, we would like to show you how anyone can start a fundraising campaign for the ME/CFS Research Foundation in just a few simple steps.

When over 500,000 ME/CFS patients (Germany) get involved in fundraising together with those around them, a lot of research becomes possible. This is exactly what we are committed to. Because only biomedical research leads to better diagnostics and ultimately to effective therapies, which are still lacking.

It is often said that research funding is primarily the responsibility of the state; it is unfair for patients to have to contribute themselves; many patients live under-supplied, sometimes in precarious situations; ME/CFS is a major medical and social disaster. We at the ME/CFS Research Foundation agree with all of these points. ME/CFS research has been neglected for decades. And there is a significant research backlog compared to other diseases. We are committed to improving this situation. Together with other organisations, we are calling for more and sustainable public ME/CFS research funding!

We also know that private donations play a key role in ME/CFS research. With their help, previously neglected topics and issues can be quickly and unbureaucratically transferred into research projects. With this basic work, researchers create new approaches that can later be continued in larger structures with public funding. There are many examples of this (e.g. in our activity report, Dec.23). And mathematically, patients and their families would be able to solve a large part of the funding problem themselves. 500,000 donations/actions quickly add up to millions (for comparison: just under EUR 7 million per year is currently publicly funded). This is another reason why we want to significantly increase private involvement. Because getting involved and actively demanding more public funding are not mutually exclusive. We need all the support we can get. #strongtogether!

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For example: Lisa's initiative: a birthday gift of hope for ME/CFS research 🙏🏽

Lisa (21), a young woman from Baden-Württemberg who is herself seriously ill with ME/CFS, is launching a fundraising campaign for the ME/CFS Research Foundation in March 2024 to mark her 22nd birthday. Lisa is choosing a path that is not only personally meaningful to her, but also has the potential to help many ME/CFS patients in the medium term. Within 2 weeks, she has already raised over EUR 10,000 in donations. Lisa's initiative shows the powerful impact that a personal initiative can have, even with a simple online fundraising campaign.

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• a campaign idea / occasion (e.g. birthday, anniversary/anniversary, event, ME/CFS Day/12 May, or just because)
• a photo (preferably several, videos are also possible)
• a story that tells why and for what the collection is being made
• a short explanation of what ME/CFS is and why there is a lack of research (download our text template here)
• a bank account (it is not yet possible to specify the ME/CFS Research Foundation as the direct recipient of the donation)

gofundme then shows the campaign and many tips on how to share it successfully on social media, via email, WhatsApp, etc. Setting up the campaign is free of charge. Fees are only charged when donations are received (transaction fee 2.9% of turnover + €0.25 per donation).

The donation amount can then be transferred to the ME/CFS Research Foundation:
Donation account (IBAN): DE35 2004 0000 0628 5316 00 (please state the name of the campaign in the subject line)

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Suggestion 2: Start a fundraising campaign on betterplace.org

Or you launch your own fundraising campaign on betterplace.org in favour of ME/CFS research. With just a few clicks, a photo and text description (download text template here), a fundraising campaign can be set up quickly. Here too, fees are only charged when donations are received (transaction fee 2.5 % of the donation turnover).

The donation amount can then be transferred to the ME/CFS Research Foundation:
Donation account (IBAN): DE35 2004 0000 0628 5316 00 (please state the name of the campaign in the subject line)

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Suggestion 3: Fundraising campaigns without social media:

Patients, families and friends can also collect donations without social media. We have received birthday donations from Walter, Frank, Flurina, Brigitte and others (thank you!). We are also happy to provide additional resources for offline campaigns:

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Suggestion 4: own fundraising campaigns - on Facebook and Instagram:

If you are already active on these social media platforms, you can start your own fundraising campaigns directly and with little effort:

• Facebook: just click here (external link). Then simply enter the details of the campaign in your Facebook account and share - done!
• Instagram: on the Instagram profile of the ME/CFS Research Foundation (mecfs_research, external link), click on "Support" and start your own fundraising campaign or donate directly (find a short guide here, external link), only available in the mobile app, not on the web.

All donations are forwarded in full to the ME/CFS Research Foundation without deduction for transaction costs.

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Suggestion 5: own donation campaign - with payment via PayPal:

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Suggestion 6: #Shop4MECFS - keep on saying it!!!

Not a real fundraising campaign, but an easy way to do something good while shopping! After the programme Amazon Smile was unfortunately discontinued without replacement in February 2023, Gooding remains a platform for social shopping.

If you like, you can register with Gooding and do good even more easily. Registered users can take advantage of many simplifications for online shopping, e.g. store shop favourites, install a toolbar in the browser, etc. And each time, ME/CFS research is supported on the side.

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Other examples of fundraising campaigns:

The above examples and aids are intended to inspire and show how many opportunities there are to easily collect your own donations for ME/CFS research. Anyone and everyone can make a personal contribution in this way. Here are some more examples of creative fundraising campaigns that we were very pleased to see. Thank you to all committed supporters!

Donation marathon: From February to June 2023, the socially committed International Women's Club (IWC) dedicated its annual "telethon" to the topic of ME/CFS research. We wrote about it in our news posting and the German newspaper F.A.Z. wrote an article (external link) about the event. Thanks to all the committed women in the IWC!

Football/soccer charity tournament: Back in July 2022, a football coach and an editor from a local newspaper organised a charity tournament in Öhningen-Gaienhofen. Here is the corresponding article in German newspaper Südkurier (external link). Thanks to the organisers, players and fans!

Regional fundraising campaign: The non-profit organisation Mirame Arts e.V. in Gütersloh donated over €7,000 to the ME/CFS Research Foundation in 2023. These funds were raised through the "OWL 4 ME" project. The association is aiming for a long-term fundraising commitment in favour of biomedical research into ME/CFS. More about this in our web news. Thanks to Mirame Arts!

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We are very happy to support fundraising campaigns!

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How can you support the work of the ME/CFS Research Foundation?

There is still a long way to go before diagnosis, care and treatment of ME/CFS patients will one day become a medical and social standard. We at the ME/CFS Research Foundation are focussing on biomedical research, which we see as the key element in solving these problems (more on this in our research finding strategy). To do this, we need extensive support from private donors - patients, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you can't support us directly, maybe you can share our story and motivate others to help. Because only together is such a feat possible.

We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!