ME/CFS - The most common and severe disease you've never heard of!
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious and debilitating disease that affects millions of people worldwide. Despite its prevalence, the human suffering it causes and the fact that it can be fatal, relatively few people are aware of the disease. Even within the medical community, there is still a lack of knowledge about the disease.
The Burden
ME/CFS is characterised by severe fatigue and a variety of other symptoms that can include muscle and joint pain, headaches, sleep disturbances, and cognitive impairment. The cardinal symptom of ME/CFS is the so-called post-exertional Malaise (PEM), a massive worsening of the symptoms after minor physical or mental exertion. These symptoms of ME/CFS can be so severe that they can significantly impact a person’s ability to perform basic daily activities, such as getting dressed, eating, and even speaking.
In around 25% of the cases, the disease is so severe that sufferers are bedridden and unable to leave their homes and in over 60% the sufferers are unable to work.
ME/CFS is one of the diseases with the lowest quality of life of all. Studies have shown that ME/CFS patients have the lowest quality of life compared to patients with other severe chronic diseases such as MS or COPD.
The Prevalence
Before the Sars-CoV2 pandemic, about 17 million people worldwide suffered from ME/CFS. In Germany, an estimated 250,000 people suffer from ME/CFS, including about 40,000 minors. Prior to the Sars-CoV2 pandemic, the prevalence of ME/CFS in Germany was comparable to that of MS. In Germany alone, the annual economic damage caused by ME/CFS is more than 7.4 billion euros.
In most cases, ME/CFS occurs after an infectious disease. Various pathogens are known triggers, such as the Epstein-Barr, Influenza and SARS-CoV-2 virus. Approximately 50% of individuals who developed a Post-Covid syndrome after a SARS-Cov-2 infection also meet the diagnostic criteria for ME/CFS.
Scientists therefore expect the number of people affected by ME/CFS to more than double in the course of the pandemic.
The Scandal
ME/CFS has been classified as a neurological disorder by the World Health Organisation since 1969, and a number of studies have demonstrated a range of neurological and immunological abnormalities in ME/CFS patients. However, a validated biomarker is still lacking. The diagnosis of ME/CFS is therefore made by differential diagnosis based on established clinical criteria. In addition, ME/CFS is not taught in medical schools, which means that many doctors are unaware of the disease or incorrectly classify it as a mental illness.
The view that ME/CFS is a mental illness was reinforced by the scandal surrounding the PACE trial in 2011. According to the PACE trial, a large proportion of subjects improved significantly with cognitive behavioural therapy (CBT) and graded exercise therapy (GET), and 22% were even considered to have recovered. All nonsense, as it turned out, when those responsible for the trial were forced by the courts to disclose their trial data. The trial was deeply flawed and is now regarded in scientific circles as a negative example of trial conduct and design. However, it continues to influence official treatment recommendations in some countries and the thinking of parts of the medical community, even though most guidelines now consider GET to be harmful and CBT to be ineffective in ME/CFS.
The psychologisation of ME/CFS today is very reminiscent of the psychologisation of MS in the 1960s. Despite the extensive evidence available at that time, individual researchers in the 1960s still advocated a psychological cause for multiple sclerosis: It was said to be a case of conversion hysteria because of the variety of symptoms, a typical personality structure long before the first symptoms appeared, and a high proportion of women with the disease. Exactly the same arguments can be heard today from doctors who advocate a psychological cause for ME/CFS.
Because of the continued psychologisation and associated stigmatisation of ME/CFS, the disease is poorly understood and has little place in public discourse. Government research funding for ME/CFS in the US is about 10% of that for MS, and research by private pharmaceutical companies is almost non-existent. In Germany, there has been zero research funding for ME/CFS until recently.
The lack of research is the reason why there is still no biomarker and no single therapy for the disease. If ME/CFS had been sufficiently researched in the past decades, Post-Covid-Syndrome would probably be well treatable today.
Time for Change
It’s time for the politicians and medical community to take ME/CFS seriously and invest in research to better understand and treat this debilitating illness. Patients deserve access to proper diagnosis, treatment, and support, and it’s the responsibility of politicians, healthcare providers and researchers to ensure that they receive it.
Further Links
If you are interested in more information about ME/CFS, check out the links below or follow me on Twitter to make sure you don’t miss any future posts.
Long COVID: major findings, mechanisms and recommendations
The relation between ME/CFS disease burden and research funding
Note
With the comparisons made to other diseases, I do not want to weigh different diseases against each other. Rather, I would like to promote the health, medical and social equality of ME/CFS and make the disease and the numbers associated with it a little more tangible.