00:00
Hello, dear viewers, this might be the video after which someone somewhere will “kill” me. I’m daring it anyway because I think the topic is very important. But I have one request: before you throw the first stone, please watch the video to the end. Today it’s about ME/CFS.
00:24
ME/CFS is short for myalgic encephalomyelitis or chronic fatigue syndrome. It is a chronic illness where the main symptom is intolerance to exertion. Even small physical or mental efforts can massively worsen the symptoms — often only after hours, or the next day. Common symptoms are exhaustion not improved by sleep, cognitive problems (brain fog), sleep disturbances, and circulatory problems when standing up. The cause is unclear. Often the illness starts after an infection, but not always. There are no lab tests and no cure. The diagnosis is made via symptoms and ruling out other illnesses.
01:12
I am an internist. I should really understand diseases, but when it comes to this illness, I have to be honest: I understand nothing — and I’m not alone [in this]. There are countless doctors who have a problem with this illness, and that is a scandal, no matter which explanation is ultimately correct. I think there could be two possible explanations.
01:34
Most of you probably don’t know this illness. That’s why I’m showing you two short video clips from an affected patient who talks about this illness on Instagram.
01:38
“I have Long Covid. Of course, I first sleep in comfortably in the morning and wait until my darling brings me breakfast in bed.”
02:04
“I have Long Covid. Of course, any excuse is good for not having to work.”
02:11
Again, a 130 pulse. “I have Long Covid. Of course, I only wear my hair gray and neglected.”
02:19
“I have Long Covid. Of course, I like being outside and moving around in the fresh air. That's healthy, too.”
02:32
[Imitating a doctor visit] “What do you have?”
“MCFS.”
“And you want treatment from the doctor — for tiredness? Oh, that's from Corona? Since Corona? That was a long time ago. That runny nose. Do you do sports? No, I thought so. So you want treatment. You don’t feel taken seriously.”
03:17
Some of you surely know Natalie Grams. She was once a homeopath and later a homeopathy critic with her own podcast and books. She did important educational work. On August 1, 2024, she published a book about her illness, ME/CFS. I really wanted to read this book but found it so exhausting and contradictory that I only made it halfway through, without learning anything concrete about the disease. I don’t want to be too critical though, since I didn’t finish the book. But in my opinion, these short videos on Instagram are bad and counterproductive.
03:54
I hope that came across as neutrally as possible — I don’t want to “bash” a valued colleague. But she’s not the only one, when it comes to sober analysis and honest criticism. I understand her frustration as a young, active woman and a mother, as she writes: “She has lost her life to a disease that isn’t understood, and that is tragic.” She loudly shows what prejudices she faces, and that must be very bitter.
04:28
But we’re moving too quickly here. Let’s step back to the beginning of the story.
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04:42
At the end of January 2024, I asked on Twitter for help. I wanted contact with people who suffer from ME/CFS to better understand what they actually have. I received many emails, which surprised me. Patients shared confidential information with me, often in very long emails, which I found unusual because most say they cannot even write long texts anymore. It must have taken great effort for them to write to me, and I am grateful for that. I promised that I would not show these emails to anyone and I keep that promise. But there were many tweets that I can show you.
05:25
From these tweets, I learned that this disease can be deadly, that allegedly 2.5 million people are affected in Germany alone. That is far more than the German Society for ME indicates. They describe about 17 million worldwide. The diagnosis is often made by patients themselves or with the help of other patients. In many tweets, one name frequently appears: Scheibenbogen. Professor Dr. Scheibenbogen works at Charité. She is deputy head of the Institute of Medical Immunology, head of the research group on immune defects and post-infectious diseases, possibly the most important person nationally and internationally concerning these diseases. Almost no publication or guideline is without her.
06:30
I was already aware of her name. I was interested in the disease long before I asked for help on Twitter. I tried to contact V Scheibenbogen in September 2023. She at least sent me one line back: no time. Absolutely understandable. She certainly had better things to do than chat with me. I also tried another way and looked for a colleague at Charité who would at least talk to me privately — no interview, no recording, just a conversation to help me understand this disease. I was told that critical questions about the disease are not welcomed and no one would speak to me. I don’t have proof of this; the email exchanges where this is stated are private.
07:15
I did not give up. There are training sessions and lectures that one can attend. I registered for the next ones and also participated in one in February 2022. It was February 16, 2024. After barely sleeping for two days due to a sick child, I was doing ME/CFS training because I really wanted to understand this problem. I hoped to get answers to my questions.
07:53
These trainings were unusual and strange. Sometimes it felt like participants were just celebrating themselves and only serving their own bubble. I tried asking a critical question in the chat but never received an answer. I also read the guidelines and many studies and articles, and I am completely lost. I have never experienced that after nearly two years of intensive study, I understand a topic so little. Maybe it is my incapacity. Maybe as an internist and gastroenterologist I think so differently that I just cannot grasp this neurological illness. Maybe I have strong unconscious biases that prevent me from objective thinking. I honestly don’t know.
08:48
I originally wanted to make a video — even a whole series — to educate about this disease. But in this video, I can only report that I have failed. But I think that is an important experience, and I want to tell you about it. I hope this video reaches someone who understands why I failed and maybe can help me.
09:20
I want to clearly document that I tried. I have put in more effort than most of my colleagues and still did not succeed. From my point of view, that proves that professional societies and also patients should change their communication. What has been done in recent years does not help. I am sure most doctors do not enjoy treating ME/CFS patients poorly. What Natalie Grams describes in her videos certainly happens, but to really move forward, a better, more self-critical communication and constructive interaction with the disease is needed. You want to bring doctors along because you urgently need their help.
09:55
In my last video, I only briefly and very neutrally mentioned ME/CFS. Just mentioned it — and immediately this comment came, which I don’t want to read. You can pause the video here if you want. But one thing is clear: such comments do not help anyone. Please stop this.
10:20
When people hear about this disease for the first time, they usually ask a justified question: could it maybe be a psychological disorder? And there is some evidence for this. The symptoms fatigue, sleep problems, concentration difficulties, and exertion intolerance overlap strongly with depression, anxiety disorders, or somatoform disorders. Studies also show a surprisingly high rate of psychiatric comorbidities that one could interpret either as a consequence of the disease or as indication of a psychological cause. Also, to date, there is no clear biomarker or any other objective test that reliably confirms ME/CFS.
11:00
Many diagnoses arise through self-labeling or patient groups, where collective narratives can amplify symptoms. This phenomenon is known from psychiatry. The fact that some studies showed positive effects of cognitive behavioral therapy and exercise programs is seen by critics as evidence that the disease might be at least partly psychologically mediated.
11:30
Finally, the often aggressive defense of the diagnosis stands out, which sounds more like identity building than sober disease description. All this together provides arguments that ME/CFS might be less a new neurological disorder and more a functional, psychologically driven syndrome. And thinking about that is no crime.
11:58
Doctors newly confronted with this disease might see it that way at first, but if they say so loudly, they get reprimanded in a very heated tone or on social media, the chaos is preprogrammed. The short clips by Natalie Grams don’t help here. When you see them, you hear prejudices again that you might have yourself. But these are not refuted. Instead, an emotional reaction is sought: “Don’t you see how bad it is for me?”
12:34
I understand that patients can no longer bear to be confronted with such unjust accusations from their point of view, but the aggression and the vehemence with which some defend their illness is frightening. For at least two reasons. It is unusual for people to fight for a diagnosis. Usually, one wants healing and not a diagnosis.
12:58
By the way, I understand why they do it. Having a diagnosis first frees them from being stigmatized as simulants and opens the door for research and possible therapy. But if you read tweets like these, you get somewhat unsettled:
13:10
“Shortly after Covid infection, a colleague who accompanies an ME/CFS patient recommended Neudorstingel and Frau Scheibenbogen. Soon I knew I had it. It took power to get the diagnosis in writing, despite Covid and ignorance about PEM everywhere. Terrible.”
13:35
It is unusual that around a disease there are groups with partly cult-like dynamics. It is simultaneously extremely derogatory toward other psychiatric illnesses: “I have ME/CFS. It’s a neurological disease and not a problem of depression.” But psychiatric diseases are not inferior to physical diseases.
14:00
It is repeatedly emphasized that ME/CFS is a neurological physical illness with measurable but completely unspecific changes. Then I should understand it as an internist, right? There are guidelines, and everything should be clarified with them. Well, that’s simply not the case here.
14:30
In Germany and Austria, there are a total of 39 research groups seriously dealing with the topic, 18 at Charité. That is vanishingly small compared to other diseases. There are only very few experts in this field. What would you think? How many leading figures are there in these groups? I have this thought: when several scientific heavyweights work on a topic, we have a better chance to classify everything correctly. It is very important to have many viewpoints and opinions for such things.
15:05
What do you think? 18, 15, fewer? There is only one woman: Professor Dr. Scheibenbogen, and that is a very big problem. Her influence is enormous. One could almost say monopolistic. Without her, hardly any project in the German-speaking area could claim broad perception or factual authority.
15:35
Almost every German-language publication or guideline on ME/CFS credits her as first or co-author. She manages the Charité fatigue center, the immunodeficiency outpatient clinic, is project leader of several government-funded networks, and active internationally in committees.
16:00
Media reports, interviews, and specialist events almost always refer back to her, whether ARD, Die Zeit, or scientific congresses. If we are lucky, Professor Scheibenbogen is a genius currently laying the foundations for researching and hopefully curing this new disease. Hopefully, yes.
16:22
But you know me—I have a problem fully believing that. You can’t just refute every critical question with a guideline that is largely authored by a single person. We would not accept that in any other disease.
16:45
Let me list the problematic points in more detail. The diagnostics are nebulous. There is no biomarker, and I would have loved that as an internist, or at least any diagnostic measure that can secure the diagnosis.
17:10
A biomarker would be idealistic. Other diseases do have one or not. But here, diagnosis is all based on history, exclusion, and PEM—that’s the fatigue after exertion. PEM is the core point of diagnostics.
17:40
In everyday life, you ask patients if they become clearly worse after minimal physical or mental effort, whether the deterioration is delayed (days to weeks), and whether it doesn’t go away with rest or sleep.
18:00
There are supportive questionnaires like the PEM questionnaire in studies and exertion tests like the two-day ergometer test, where patients perform measurably worse on the second day. There are also hand strength measurements and some tests still in the research phase.
18:30
But there is no single test. There is no gold standard and hence no diagnostic certainty. This also occurs in other diseases that we do not question.
18:50
Routine tests, with a few exceptions, such as the two-day ergometer and blood flow tests, unfortunately do not allow for secure diagnoses. Easily falsifiable if one wishes.
19:15
This is usually dismissed by the argument that the disease is so severe that nobody wants to have it. I agree. No one who truly has this disease wants it. But what about those people who don’t have it but would like to?
