Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

菠萝基金会增加捐款至五百万美元

两周前,在2018年1月14日,开放医学基金会从菠萝基金会收到了100万美元的捐款,用于“加速慢性疲劳综合症和相关慢性复杂疾病急需的研究”。

菠萝基金会因为我们美国和国际开放医学基金会家族在社交网站上对之前捐款的高度赞赏而感动,今天他们通过比特币增加了400万美元的捐款,使他们的总捐款达到500万美元!开放医学基金会首席执行官兼总裁琳达坦南鲍姆认为此次捐赠与患者群体在Reddit和其他社交媒体上表达了诚挚的谢意有密切的关系。

开放医学基金会已经在Facebook,Twitter和Reddit上收到了数千个喜欢和评论,这个令人兴奋的消息使许多患者和家属喜极而泣,以下是两个衷心感谢的例子:

“感谢您给患有这种疾病的人带来希望。我的儿子已经患有这种疾病10年了,在这10年里大部分时间并没有被广泛认为是一种疾病,更何况被认为是一种严重的疾病。他和其他病患者充满疲惫和痛苦的生活可能会很快就要结束了。“

“谢谢你,菠萝基金会,你们不但看到了这个被隐形衣所掩盖的疾病,还看见病患者们急需的帮助。你们赐予我们殷切的期望。”Liane B.

我们感谢每一位在社交媒体上表达谢意的人!你们的行动和积极的反应绝对能够推动研究。

 这笔额外的资金将推动几个关键领域的研究:为慢性疲劳综合症创建一个诊断测试; 扩大患者数据分析; 加快新技术的发展,确定治疗方案; 最终找到治愈方案。

为了表示对开放医学基金会的支持,菠萝基金会的“菠萝”(网上匿名捐款者)在最近的一个消息中说:“我已经听说过慢性疲劳综合症一段时间了,我知道这是一个很严重的疾病,而且没有太多的治疗或研究。我最近收到了几位来自该领域学者大力支持慢性疲劳综合症的支持信,这有助于我所作出的决定!“

我们非常感谢菠萝基金会点燃了慢性疲劳综合症的研究以及我们心中的希望!

开放医学基金会感谢王燊铮的中文翻译

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo