8.1.2020
Open Letter to Danish Health Politicians
On March 14th 2019, a unified Danish Parliament voted to acknowledge WHO’s diagnostic
classification of Myalgic Encephalomyelitis (ME - G93.3) as a biological illness and to separate
ME from Functional Disorders.
The proposal passed is aligned with the current international scientific knowledge about ME.
Based on analysis of more than 9.000 peer-reviewed studies, the Institute of Medicine
1
, Centers for
Disease Control (CDC), National Institutes of Health (NIH), as well as the advisory report from the
Dutch Health Council
2
, conclude that ME is a serious chronic multisystem, biological disease that
substantially limits the activities and quality of life of patients.
ME is a complex and physical disease for which there is currently no cure. It is not a psychological
or psychosomatic disease. There is strong scientific evidence of neurological/autonomic
dysfunction, immunologic and inflammatory pathologies, microbiome perturbation,
metabolic/mitochondrial as well as cardiac abnormalities (and more) in patients.
Based on this scientific evidence, there is an imminent need to change the narrative of ME to avoid
that patients are misdiagnosed or further stigmatized by falsely equating the disease with (chronic
or unexplained) fatigue, deconditioning or psychosomatic classifications, like functional disorders,
medically unexplained symptoms, somatoform disorders, somatic symptom disorder, functional
somatic syndrome, neurasthenia, or bodily distress disorder/syndrome.
Patients have for decades been prescribed treatments like Cognitive Behavioral Therapy (CBT) and
Graded Exercise Therapy (GET), based on the idea that they suffer from “false illness beliefs”, fear
of exercise or that they are deconditioned. This ‘deconditioning hypothesis’ as well as the
‘psychosomatic hypothesis’ of ME is not supported by biomedical research.
The treatments based on these hypotheses (CBT/GET) have produced no robust evidence in the past
two decades, as the US Agency for Healthcare Research and Quality systematic literature review,
and reanalysis of the largest ever study on CBT/GET (PACE trial)
3
have shown.
The CDC has recently removed its recommendations for CBT and GET from its website.
1
IOM 2015 report
2
https://www.gezondheidsraad.nl/en/task-and-procedure/areas-of-activity/optimale-gezondheidszorg/mecfs
3
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3