ME/CFS Information

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.

disCOVer – reCOver – unCOVer
The University of Erlangen informs under "unCover Erlangen - ME/CFS" about the study structure if #ME/CFS
https://www.augenklinik.uk-erlangen.de/forschung/ag-long-covid-me/cfs/me/cfs-uncover-erlangen/

Major Co-Morbidities of MEcfs and Triggers
Orthostatic problems (POTS) - autonomic nervous system symptoms, dysfunction of blood circulation, standing or sitting causes sufferers to develop abnormal heart rates, cardiac arrest, blood pressure fluctuations, dizziness and, in severe cases, fainting. 
Mastcell activation syndrome (MCAS) and Small Fiber neuropathies can cause other severe symptoms, such as burning pain, burning mucous membranes, tremors, RLS, muscle twitching, 'pins and needles', shortness of breath, severe temperature regulation disorders, cognitive disorders, paralysis and much more. 
The symptoms overlap, so a careful anamnesis is necessary, which is unfortunately neglected in everyday medical practice. 
Craniocervical Instability (CCI) and Ehlers Danlos Syndrome (EDS congenital weakness of the connective tissue) can also be co-morbidities. There is no medical contact point for this in Germany either.
 
The best-known triggers of MEcfs are infections with different pathogens, e.g. viruses such as the Epstein-Barr virus, HHV6, the Sars-COV-2 virus, enteroviruses but also bacteria, fungi or parasites. Lyme disease is also a well-known trigger among those affected. Surgeries and medications can also be triggers, including fluoroquinolones, a group of antibiotics that now have a “Red Hand Letter” but are still prescribed. They can also lead to severe ME/CFS symptoms and symptoms of all comorbidities. 
 

ME/CFS is the most neglected disease of the 21st century, hushed up, research is absolutely underrepresented, thousands of people lie at home without basic medical care and are often discriminated against. People with ME/CFS have a worse quality of life than COPD patients and / or MS patients!

Also this article explains the disease very well:

https://www.freitag.de/autoren/wreiter/a-horrible-disease

Lecture by Dr. Amy Proal microbiologist (Polybio) on pathomechanisms (including autoantibody production) in LongCovid, MECFS, Lyme, Small Fiber Neuropathy, etc.

https://www.interdependence.org/resources/the-global-interdependence-center-solve-long-covid-initiative-program-series-medical-research/

More on Postural Orthostatic Tachycardia Syndrome (PoTS) and other dysautonomies:

https://www.pots-dysautonomia.net

More on Mast Cell Activation Syndrome (MCAS):

https://mcas-hope.de

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The non-profit association Brückeverbindet e.V. collects the donations for this project on a specially set up account. Your donation goes 100% to the research project of the UNI-Erlangen to include ME/CFS sufferers in the study with the promising drug BC007.

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