This year on May 12, World ME Day, it is necessary to reflect on a new variant of the post viral disease ME (myalgic encephalomyelitis): Lung COVID. Lung COVID is not a new disease, but it is referred to internationally as a subcategory of ME. A conservative estimate is that residual complaints will persist in 10% of people who have had COVID.
One to one match
The complaints correspond almost one to one with the symptoms of the multi-system disease ME: severe fatigue and a long recovery time after the slightest physical or mental exertion, sleeping problems, heart problems, muscle and joint pain, shortness of breath, problems with memory, focus and concentration (“ brain fog ”), headaches, etc.
In most ME patients the complaints arose acutely after a (virus) infection. Many ME patients also joined after SARS and Q fever. ME is sometimes also referred to as chronic fatigue syndrome (CFS).
Reluctant to acknowledge complaints
Every week we read in newspapers and magazines the complaints that Lung COVID patients face and the problems they experience with doctors who cannot help them. Likewise, experiences with benefit agencies that are reluctant to recognize the complaints and the limitations that this disease entails. A trajectory of lack of knowledge and care that many ME patients recognize.
Because there are still no biomedical treatments for ME patients, as with Lung COVID, patient organizations see that clinicians present GET (Graded Exercise Therapy) or behavioral therapy to many Lung COVID patients. It has now been recognized that this is not a curative treatment, but a treatment that can even be harmful to the patient.
Practical international manual
Patient associations are calling on all healthcare providers to learn from the knowledge that is now internationally available about ME and to include this knowledge in the treatment of ME and Long Covid patients. To this end, the ME / CFS Association has now sent more than 1,200 GPs in the Netherlands a practical international manual for diagnosis and treatment. Take the symptoms seriously and biomedically relieve them where possible, until a curative treatment is found through research.
Worldwide, research into ME and other chronic post-viral diseases is accelerating, as the COVID-19 epidemic is expected to add at least 10 million patients with chronic complaints.
A major step has recently been taken in the Netherlands in the field of biomedical research into ME: Minister Van Ark has pledged 28.5 million euros. After the recognition of ME as a serious chronic disease by the Health Council in 2018, this amount offers new hope for better treatment of ME and Lung COVID patients. It is now imperative that practitioners and researchers join forces to build knowledge and find good – potentially curative – biomedical treatments for all post-viral diseases, or ME.
Source: ME / CFS Association
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