German Article/Deutscher Artikel: Eine schreckliche krankheit
Myalgic Encephalomyelitis, ME for short, is a disease unknown to the public. Also physicians and nurses as well as hospitals do not know, how to deal with such patients. This is despite the fact that in Germany the disease is three times more frequent than HIV and also more frequent than multiple sclerosis. Nevertheless, we do not teach it and doctors therefore treat patients wrongly. This article is intended to give a rough overview of this common disease, in other countries this is taken over by the health ministries.
ME is a very complex neuro-immunological disease.
ME affects all body systems: brain and nervous system, immune system, hormonal system, muscles and cell metabolism. As a result, patients often have more than 20 symptoms. Here the problem comes to light that doctors still know the rule "more than 3 symptoms, then it must be psychological". This is fatal for ME patients, because mentally ill people are treated with activation and exercise therapy, but these therapies are harmful for people with ME. Because ME patients suffer as a main symptom from the so-called PENE (Postexertional neuroimmune exhaustion): This describes „the pathological inability to produce sufficient energy when needed“ with pronounced neuroimmunological symptoms. The PENE is „part of the body's global protective reaction“. According to my current knowledge, this symptom is unique and, in the „International Consensus Criteria for ME“, a symptom that is mandatory for diagnosis.
A symptom with catastrophic effects
The PENE can be described by the fact that already with very small physical activity. like for example brushing teeth. it comes to a worsening of all symptoms and to a muscular exhaustion. Even short conversations can trigger a PENE. However, the PENE comes delayed (24-48h) and can last for days, weeks or months. It is not possible for ME patients to be physically or mentally active. The affected persons therefore spend their time resting on the sofa or in bed. For healthy everyday things, such as meeting friends, ME patients are associated with an increase in symptoms and for severely affected people are no longer possible at all, since already the vital things, i.e. eating and drinking, consumes all available energy. Rest breaks do not lead, as with healthy humans, to a loading of the Akkus , but only to a very small recovery.
A widespread disease
It must be stressed that in Germany about 240,000 (as of 1993) and 17 to 30 million people worldwide are affected by this terribly restrictive disease. About 25 percent of those affected are so severely affected that they are unable to leave their home or bed. They are often in complete need of care and are cared for by relatives. Few percent of those affected are so seriously ill that they spend their time lying horizontally in bed because of orthostatic intolerance, even things like lifting their head lead to an immediate increase in symptoms. Seriously ill people already have thoughts that cause their condition to worsen. They are really no longer capable of any physical or mental activity.
ME offers the lowest quality of life according to a study
ME is therefore worse than cancer and chronic kidney failure. A quote from the researcher Dr. Nancy Klimas describes the drama: „I have divided my clinical time between the two diseases, and I can tell you that if I had to choose between the two diseases (in 2009), I would rather have H.I.V.“. The difference with HIV is that effective therapies have been available since about 1995, less than 15 years after the first major onset of the disease. ME has been listed by the World Health Organization (WHO) under the key G93.3 since 1969, but today, 50 years later, there is still no therapy and no blood test for diagnosis and there is a lack of research.
Unfortunately, this WHO diagnosis key does not lead to patients receiving social and nursing support in Germany. Since many ME patients look healthy at first glance, i.e. their serious illness is not visible to them, they have a bad hand in classifying the need for long-term care. Especially since this disease is not taught at medical universities in Germany and such decision makers are not only not sufficiently informed about this disease but in almost all cases there is no knowledge about the existence of this disease.
Medical scandal
It is a medical scandal that this disease is not researched and not a word is spoken about this disease in medical teaching. As a result, 99.9 percent of doctors do not know about ME and misdiagnose patients as mentally ill and therefore prescribe harmful therapies. Due to the lack of a blood test, the disease is unfortunately not as easy for doctors to diagnose as other diseases. The „International Consensus Criteria for ME“ (ICC) are unfortunately not known either and are therefore not used, although with these ME can be clearly diagnosed.
Many doctors claim that there are no markers in the blood. It is true that there have been no clear changes in the blood that could serve as diagnostic criteria. However, this does not mean that there are no abnormalities in the blood of ME patients. On the contrary, many abnormalities can be detected, such as mitochondrial and immune system dysfunction (see list of studies on ME-typical biomedical abnormalities).
Confusing disease name
Another problem is the name of the disease. How do you make a disease disappear? By renaming it every few years, first Myalgic Encephalomyelitis (ME), then Chronic Fatigue Syndrome (CFS), now it is suddenly called Systemic Exertion Intolerance Disease (SEID). All names except ME are trivializing and ignore the existing brain (encephalo) and spinal cord (myel) inflammations (itis), in those who died of ME autopsies were detected inflammations in the brain and spinal cord. In addition, the poor diagnostic criteria CFS and SEID demand that the patient has at least 6 months of continuous „fatigue“. This means that severe cases, despite the rapid progress, would be diagnosed after 6 months and then everything would already be too late. ICC-ME can be diagnosed immediately, i.e. much faster. Most patients wish they had learned earlier that activity makes the disease progress and rest is extremely important. The energy production of most patients only works with adrenaline, which makes it impossible to rest.
Lack of research funding
The topic of research is a major problem, as there is virtually no funding for ME worldwide. There are only two researchers in Germany who are part of the EUROMENE research network, but they have not yet been able to carry out any significant research apart from an overview study. Prof. Scheibenbogen from Chartié Berlin and Prof. Harrer from the University of Erlangen would certainly like to carry out more studies on patients, but the funding is lacking. There would be sufficient medicines already with some ME patients to improvement or healing lead, therefore it would be surely meaningful here some medicine studies to start (e.g. with Cyclophosphamide, Ampligen, antiviral or antiretroviral drugs).
Conclusion
ME is a serious disease. Those affected need the help of the healthy to fight for research and recognition. Unfortunately, many ME patients, especially those who took many years between diagnosis and illness, are no longer able to do so. Relatives try with petitions (see further information) in Germany and before the European Parliament to provide for the necessary attention, therefore it would be the minde
Translated with www.DeepL.com/Translator
Weitere Informationen
Petition: We want our lives back!
Book by Katharina Voss: ME - Myalgische Enzephalomyelitis vs. Chronic Fatigue Syndrom (ME vs. CFS) Fakten Hintergründe Forschung von Katharina Voss, ISBN-10: 3743924943
Very informative blog from Katharina Voss: meversuscfs.blogspot.com
Charité Berlin: Das Chronische Fatigue Syndrom – eine unterschätzte Erkrankung
Memorial ME/CFS/CFIDS: www.ncf-net.org/memorial.htm
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