{"id":8825,"date":"2024-07-31T10:34:16","date_gmt":"2024-07-31T10:34:16","guid":{"rendered":"https:\/\/mecfs-research.org\/?page_id=8825"},"modified":"2025-04-30T15:15:26","modified_gmt":"2025-04-30T15:15:26","slug":"pm-report-summer2024","status":"publish","type":"page","link":"https:\/\/mecfs-research.org\/en\/press\/press-releases\/pm-report-summer2024\/","title":{"rendered":"2024-07 Pressemeldung Bericht Sommer 2024"},"content":{"rendered":"
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Press release<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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The Hamburg-based ME\/CFS Research Foundation has raised 1.37 million euros for research into ME\/CFS.\n<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Hamburg 31. Juli 2024<\/p>

The number of ME\/CFS research projects has increased in the last two years. However, there is still a wide gap between the need for research and research activities. The foundation publishes its semi-annual report in August 2024.<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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ME\/CFS Forschungsentwicklung (Deutschland)<\/b><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Zum Zeitpunkt der Gr\u00fcndung, im Februar 2022, gab es kaum F\u00f6rdermittel zur Erforschung der Multi-System-Erkrankung ME\/CFS. Seitdem mehr \u00f6ffentliche Finanzierung verf\u00fcgbar ist, steigt die Zahl der Forschungsprojekte, wie die Stiftung in ihrem ME\/CFS Research Update<\/a><\/span> zeigt.<\/p>

Doch bis einfachere Diagnostik oder urs\u00e4chliche Therapiem\u00f6glichkeiten f\u00fcr ME\/CFS verf\u00fcgbar sind, ist es noch ein langer Weg.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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Spenden und F\u00f6rdermittel<\/b><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Innerhalb der letzten zweieinhalb Jahre konnte die gemeinn\u00fctzige Stiftung 1,37 Millionen Euro an Zuwendungen generieren. Das Geld wird vollst\u00e4ndig in die ME\/CFS Forschungsf\u00f6rderung investiert. Die Summe setzt sich zusammen aus privaten Spenden und indirekten F\u00f6rdermitteln gr\u00f6\u00dferer Spender. Die Mittel gehen in Abstimmung mit den F\u00f6rdernden unmittelbar an Vorhaben, die durch die ME\/CFS Research Foundation gem\u00e4\u00df ihrer research funding strategy<\/a><\/span> ausgew\u00e4hlt werden. Diese wurde in Zusammenarbeit mit einem international scientific advisory board<\/span><\/a> entwickelt.<\/p>

Knapp ein Drittel der Spendensumme wurde bisher durch private Spenden und Spendenaktionen erzielt. Erkrankte und ihre Angeh\u00f6rigen sammeln u.a. Gelder zu Geburtstagen und Benefiz-Veranstaltungen.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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So hat beispielsweise Lisa aus Herrenberg zu ihrem 22. Geburtstag 12.500 Euro zusammengetragen (Instagram link<\/span><\/a>). Lisa ist seit drei Jahren an ME\/CFS erkrankt und dadurch schwerbehindert (Pflegegrad 3). Trotz dieser Einschr\u00e4nkung konnte sie \u00fcber Social Media viel Aufmerksamkeit f\u00fcr ME\/CFS und ihre Spendenkampagne erzeugen.<\/p>

Beeindruckend war auch die Aktion der Hamburger Goldkehlchen<\/a><\/span>, die am 13. Juli ein Benefiz Konzert f\u00fcr 5.000 Fans zugunsten der ME\/CFS Research Foundation gaben. Tagesthemen-Sprecher Ingo Zamperoni \u00fcberreichte zum Ende des Konzerts eine Spende i.H.v. 50.000 Euro von den Musikern und ihren Fans an J\u00f6rg Heydecke (Gesch\u00e4ftsf\u00fchrer der Stiftung).<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Gef\u00f6rderte Forschungsprojekte\u00a0<\/span><\/b><\/p>

Seit 2022 f\u00f6rdert die ME\/CFS Research Foundation die Forschung in Form von Projektfinanzierung und Vernetzung von Forschern. Seit Beginn diesen Jahres wird beispielsweise ein Forschungsvorhaben an der Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin<\/span><\/a> gef\u00f6rdert, das sich mit Biomarkern und Krankheitsmechanismen zu ME\/CFS befasst. Prof. Dr. Carmen Scheibenbogen erl\u00e4utert in einem Video-Interview<\/a><\/span> Inhalte und Ziele des Projektes.<\/p>

Another funded project is the first ME\/CFS model ward (clinic) for severely affected children and adolescents in Munich<\/a><\/span>. Dieses Projekt bietet erstmals Behandlungsmodule\u00a0f\u00fcr Schwerstbetroffene an und erhebt potenzielle Biomarker\u00a0f\u00fcr die Pr\u00e4zisionsdiagnostik in dieser Betroffenengruppe.<\/p>

Vernetzung von Forschenden und Transparenz zu laufender Forschung\u00a0<\/span><\/b><\/p>

Eine systematische \u00dcbersicht der aktuellen ME\/CFS-Forschungslandschaft bietet das ME\/CFS Research Register<\/a><\/span>. Informationen zu laufenden Projekten, beteiligten Arbeitsgruppen, Publikationen und Fachveranstaltungen geben einen wertvollen \u00dcberblick f\u00fcr Forschende, Mediziner*innen, Journalist*innen und Betroffene.\u00a0<\/span><\/p>

Den gesamten Halbjahres-Bericht<\/a><\/span> finden Sie auf der Webseite der ME\/CFS Research Foundation<\/a><\/span>.<\/p>

Goldkehlchen Seppo (Sebastian Orthmann) and J\u00f6rg Heydecke are affected: Both have a family member who is seriously ill with ME\/CFS or Long Covid. In a video on Instagram, they call for donations together and explain their commitment. Choir member Sebastian Orthmann initiated the concert campaign: \"We need many more research initiatives for this cruel disease so that ME\/CFS can be diagnosed and treated. And we hope that our concert will raise awareness for all those affected.\"<\/p>

J\u00f6rg Heydecke founded the ME\/CFS Foundation 2022. The traditional Hamburg Goldkehlchen summer concert in aid of his foundation is doubly fortunate for him. He has long been a fan of the choir and is now delighted with the remarkable donation, which he plans to invest in an ongoing research project. Prof Dr Carmen Scheibenbogen has been researching ME\/CFS at Charit\u00e9 Berlin for many years. In addition to ongoing projects, her team has been working on biomarkers and disease mechanisms since January 2024. This new project is mainly funded by the ME\/CFS Research Foundation.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Press contact<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Thank you for your interest. Please feel free to contact us, sign up to our press mailing list and subscribe to our newsletter.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"Petra\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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Petra Dohrendorf
e-Mail: presse@mecfs-research.org<\/a><\/span>
phone: +49-179-1419112<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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Weitere Informationen zu ME\/CFS, zur Stiftung und zur aktuellen Berichterstattung in den Medien finden Sie im Pressebereich auf unserer Website: https:\/\/mecfs-research.org\/press\/<\/a><\/span>\u00a0<\/p>

Donation info<\/strong>: https:\/\/mecfs-research.org\/spenden\/<\/p>

Donation account<\/strong>: DE35 2004 0000 0628 5316 00 (Commerzbank)<\/p>

ME\/CFS Research Foundation is a non-profit limited liability company and fulfils the statutory requirements according to \u00a7\u00a7 51, 59, 60 and 61 AO (German tax laws). It may issue donation receipts within the meaning of Section 10b of the German Income Tax Act.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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About ME\/CFS Research Foundation<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Die ME\/CFS Research Foundation f\u00f6rdert den Auf- und Ausbau biomedizinischer Forschung zum Krankheitsbild ME\/CFS (Myalgische Enzephalomyelitis\/Chronisches Fatigue-Syndrom). Aufgrund unzureichender Forschung gibt es bis heute keine urs\u00e4chliche Therapie dieser h\u00e4ufigen komplexen Multisystem-Erkrankung. Es bedarf dringend weiterer Ma\u00dfnahmen um den considerable global backlog<\/a> in der ME\/CFS-Forschung zu schlie\u00dfen und den Versorgungsnotstand entgegen wirken.\u00a0<\/span><\/p>

The foundation cooperates with ME\/CFS patient organisations that have long been active in improving the situation. Initially focussing on Germany, this commitment will later be extended to other EU countries.<\/p>

The foundation cooperates with ME\/CFS patient organisations that have long been active in improving the situation. Initially focussing on Germany, this commitment will later be extended to other EU countries.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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About ME\/CFS (myalgic encephalomyelitis\/chronic fatigue syndrome) and long COVID:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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ME\/CFS (myalgic encephalomyelitis \/ chronic fatigue syndrome) is a complex, severe disease of the nervous and immune system. ME\/CFS is predominantly post-infectious, also as a result of COVID-19, and is the most severe form of post-COVID syndrome. ME\/CFS sufferers have pronounced physical and cognitive symptoms, a very low quality of life and often a high degree of disability. 60 to 75 per cent of all sufferers are unable to work, many of whom are house or bed bound. The main symptom is severe exercise intolerance with worsening of symptoms after everyday activities (PEM = post-exertional malaise). The diagnosis of ME\/CFS is complex due to the lack of a biomarker (cross-domain exclusion diagnostics), and there is currently no causal therapy. Adults with ME\/CFS currently have little prospect of improvement and reintegration into working life. The prognosis is better for children and adolescents, but long-term school absences are still the rule. For most of those affected, participation in normal life with work, education, friends, sport, music, etc. is not possible.<\/p>

In Deutschland waren bereits im Jahr 2021 \u00fcber 500.000 Menschen von ME\/CFS betroffen. International sind \u00fcber 34 Millionen Menschen an ME\/CFS erkrankt. In Folge der Pandemie rechnet man aktuell bereits mit mehr als 600.000 Betroffenen in Deutschland, da ein Teil der von Long COVID Betroffenen ME\/CFS entwickelt.\u00a0<\/span><\/p>

The medical and psychosocial care available to sufferers is inadequate. There are often misdiagnoses and consequential damage as a result. Economic factors are also critical, as labour is lost due to illness and training is not started or completed.<\/p>

Mehr Informationen unter: https:\/\/mecfs-research.org\/en\/was-ist-me-cfs\/<\/a><\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"

PressEmitteilung Die Hamburger ME\/CFS Research Foundation sammelt Spenden in H\u00f6he von 1,37 Millionen Euro f\u00fcr die Forschung zu ME\/CFS Hamburg 31. Juli 2024 Die Anzahl der ME\/CFS Forschungsprojekte ist in den letzten zwei Jahren gestiegen. Doch noch immer liegen Forschungsbedarf und Forschungsaktivit\u00e4ten weit auseinander. Zum August 2024 ver\u00f6ffentlicht die Stiftung ihren Halbjahresbericht. ME\/CFS Forschungsentwicklung (Deutschland) […]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":8866,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-8825","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/pages\/8825","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/comments?post=8825"}],"version-history":[{"count":51,"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/pages\/8825\/revisions"}],"predecessor-version":[{"id":12074,"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/pages\/8825\/revisions\/12074"}],"up":[{"embeddable":true,"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/pages\/8866"}],"wp:attachment":[{"href":"https:\/\/mecfs-research.org\/en\/wp-json\/wp\/v2\/media?parent=8825"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}