ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a serious disease of the nervous and immune systems that often occurs after infections, including as a result of COVID-19. It is considered the most severe form of post-COVID syndrome. Those affected suffer from significant physical and cognitive impairments, which leads to a severely reduced quality of life and often to a high degree of disability. A central symptom is exercise intolerance, in which symptoms worsen after everyday activities (post-exertional malaise, PEM).

The diagnosis of ME/CFS is complex because there are no specific biomarkers and extensive exclusion diagnostics are usually required. There is currently no causal therapy and the care situation is inadequate. Misdiagnoses and subsequent damage are common and the prognosis for adults is poor because returning to work is often not possible. The outlook for children and adolescents is somewhat better, but long periods of absence from school are common.

In Germany, over 500,000 people were affected in 2021, including around 65,000 children and adolescents. Internationally, over 34 million people are ill. The pandemic is expected to affect over 600,000 people in Germany, as many long-COVID patients also develop ME/CFS.

Sources:

1: Statement by the Association of Statutory Health Insurance Physicians during the ME/CFS hearing in the Health Committee of the German Bundestag (April 2023): https://www.bundestag.de/resource/blob/943000/60468062de2e557ef6436afb4e5c9173/20_14_0095-5-_Kassenaerztliche-Bundesvereinigung_ME-CFS_nicht-barrierefrei-data.pdf

2: Extrapolation based on the number of 500,000 affected people (Germany) and various international estimates that assumed 17 million ME/CFS sufferers before the pandemic.

ME/CFS is one of the diseases with the lowest quality of life, often lower than in stroke, heart failure or cancer patients. Studies show that those affected have the lowest levels of vitality and functionality compared to other chronic diseases [ 1 ]. Adults have little prospect of recovery and return to work, while the prognosis for children and adolescents is somewhat better. However, long periods of absence from school are common and participation in normal life is not possible for most affected people [ 2 ].

Although ME/CFS was classified as a neurological disease by the WHO in 1969, research remained neglected for decades. One reason for this was the lack of government funding. In Germany, there was no official support for ME/CFS research until 2020.

To this day, many doctors are inadequately trained in dealing with ME/CFS. There are only a few specialty clinics in cities such as Berlin and Munich. The diagnosis and care situation is accordingly poor, and medical and social services are often denied to those affected or are made difficult. This stress often leads to families and relationships breaking up. The most common cause of death among those affected is suicide due to a lack of prospects.

mecfs.de - Results of a pan-European survey on ME/CFS

mecfs-research.org - What is ME/CFS?

Long COVID refers to persistent symptoms that occur after COVID-19 infection and may persist for several weeks or months. These symptoms can affect a variety of organ systems, including the lungs, cardiovascular system, nervous system, and other organs. The most common symptoms include persistent fatigue, difficulty breathing, muscle weakness, difficulty concentrating, and joint pain. Long COVID can cause significant impairments in quality of life and interfere with the ability to perform daily activities. Although the exact causes and mechanisms of Long COVID are not yet fully understood, studies show that it can affect people of all ages, regardless of the severity of the original COVID-19 illness. Treatment for Long COVID focuses on relieving symptoms and restoring function, with multidisciplinary approaches often recommended.

The ME/CFS Research Foundation promotes and funds biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID. Founded in 2022, the foundation aims to address the significant lack of public research funding and scientific understanding of these serious diseases, which affect over 500,000 people in Germany alone. ME/CFS often occurs after infections, including COVID-19, and has been known for over 60 years but remains significantly under-researched. The foundation aims to improve the recognition, diagnosis and treatment of ME/CFS by supporting innovative research projects.

The ME/CFS Research Foundation is particularly committed to research into these diseases, as 60% of patients are unable to work and around 80,000 children and young people in Germany are affected. Patients suffer from this serious physical illness and are often medically and socially neglected. By funding and promoting biomedical research, the foundation aims to create the basis for better knowledge, teaching, recognition, diagnosis, treatment and hopefully one day causal therapies so that patients can participate in their professional, school and family life again.

Consisting of a dedicated team of patients, relatives and supporters, the Foundation seeks financial and active support to expand its work and create a better future for ME/CFS patients. The Foundation is working to build a network of researchers, fundraise and collaborate with major patient organizations.

For more information, visit the ME/CFS Research Foundation website.

https://mecfs-research.org/

At Biovora, we firmly believe that we have a responsibility to make a positive contribution to educating, researching and solving the serious diseases of Myalgic Encephalomyelitis and Long COVID. We want to give everyone the opportunity to be part of the solution.

That is why we have decided to donate a portion of the profits from each supplement sold to the ME/CFS Research Foundation. This foundation invests the donations conscientiously and professionally in numerous research projects. We are convinced that the foundation's work is crucial to improving the understanding of ME/CFS and Long COVID and ultimately enabling life-changing treatments.

We would like to stress that we do not have an official partnership with the ME/CFS Research Foundation, nor are we associated as such. Rather, we are simple donors who believe in the important work of the Foundation and want to contribute to its mission.

We value transparency and want to be clear about how and when we submit our donations. Every year we donate 40% of our profits to research for ME/CFS and Long-COVID. We follow a clear process:

1. Financial Statements : After the close of each financial year, we calculate our profit. This is usually done at the beginning of the new year.
2. Donation calculation : As soon as the annual financial statements are available, we determine the exact amount to be donated. This is 40% of the profit achieved.
3. Donation transfer : The calculated donations are transferred promptly to the selected research institutions. We ensure that the donations are made before we submit our tax return so that they can be claimed as business expenses.
4. Proof and transparency : After a successful donation transfer, you will receive a proof of the amount donated upon request. This way you can be sure at any time that your support is going directly to research.

Our donation receipts are usually sent a few weeks after the donation is transferred. If you have any questions, please feel free to contact us.