ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a serious multi-system disease with devastating effects on the lives of those affected. Symptoms range from complete exhaustion, inability to sit or stand, disorders of the blood circulation regulation, palpitations, strong head, muscle, tendon and nerve pain, dizziness, tinnitus, intermittent paralysis, seizures, burning sensation on the skin, visual and hearing disorders up to to irritation and sensitivity to light, severe concentration disorders and much more. Symptoms gradually worsen with exertion. Affected people can no longer participate in public life and become care cases. ME/CFS can reach a stage where people can no longer speak or eat.
Although classified as neuro-immunological by the WHO in 1969, this serious disease has remained without support, clinical research and treatment to this day. In Germany there are around 300,000 people affected, 40,000 of whom are children and young people. Worldwide there are an estimated 17 million!
Long-Covid, the disease that occurs in around 10% of those infected after infection with the SARS-CoV-2 virus, has resulted in thousands upon thousands developing the full picture of ME/CFS since the beginning of the pandemic.
In mid-September 2021, the German Federal Ministry of Education and Research (BMBF) launched a study to research the drug BC 007 under the direction of Dr. Dr. med. Bettina Hohberger at the University Hospital Erlangen, but ONLY for patients affected by Long-Covid. Unfortunately, this means that ME/CFS patients who have been seriously ill for years and decades for a cure cannot be included in the study despite the large overlap between the two clinical pictures.
We want to change that! Miss Dr. Hohberger would also like to help those affected and set up a parallel study for ME/CFS.
It is a chance for ME/CFS sufferers not only to become publicly visible, but finally to take part in a drug study that could improve their living situation, possibly even lead to a cure!
The University Hospital Erlangen made a significant discovery in July 2021: A Long-Covid patient became symptom-free after treatment with the heart drug BC007 from Berlin Cures. Now other patients have been treated with it, with the same success.
BC007 has already been successful at Green Star. A team of doctors from various disciplines around Dr. As part of a study, Hohberger had already found out that a Covid 19 infection can also affect the blood circulation in the eyes. In the blood of the affected patients, they found certain proteins that also occur in glaucoma disease (glaucoma): These are so-called autoantibodies against G-protein-coupled receptors.
„This means that the immune defense, which is good per se, is directed against the own body and forms substances that can be harmful. This sometimes has serious consequences,“ explains Dr. Dr. Bettina Hohberger, specialist at the Erlangen Eye Clinic. „We already know one of these autoantibodies from glaucoma and know that it has a negative effect on blood circulation in the eyes,” explains the doctor.
Disturbances in the microblood circulation and increased autoantibodies can be detected both in long-covid patients and in ME/CFS patients by measuring them in the blood. These autoantibodies are rendered harmless by the drug BC007. This has now happened to the first Long Covid patients. And that’s what Dr. Hohberger and her team also test it in ME/CFS patients.
Through her long-standing cooperation with Dr. Wallukat of Berlin Cures, the ophthalmologist had learned of a preparation that binds these harmful autoantibodies. This would make it possible to render the autoantibodies harmless and possibly improve the circulatory disorders. The drug was brought into a registration trial several years ago specifically for patients with severe heart disease by Dr. Wallukat, his colleague Dr. Annekathrin Haberland and former heart surgeons at the German Heart Center in Berlin. "Originally, I wanted to use it to help my glaucoma patients," Dr. Hohberger recalls. "Then when we saw the results that came out of collaborative projects on Long-Covid, it was like a lot of little puzzle pieces that fit together for us. It was quite conceivable that Long Covid symptoms could also improve as a result."
https://www.fau.de/2021/08/news/wissenschaft/long-covid-medikament-hilfe-fuer-weitere-betroffene/
Artikel „Eine Schreckliche Krankheit“
https://www.freitag.de/autoren/wreiter/a-horrible-disease
ME International - Questions about ME
ME/CFS Portal
ARTE TV Documentary about ME/CFS from July 12, 2021
https://www.arte.tv/en/videos/096283-000-A/living-with-chronic-fatigue-syndrome/
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