Independent researchers – someone not associated with an academic institution – Mark Vink (also a person with ME/CFS) and Alexandra Vink-Niese, have published a paper in the Journal of Clinical Medicine entitled “An Overview of Severe Myalgic Encephalomyelitis”.
In the article, which is a 44-page review of the literature relating to severe ME/CFS, the authors provide five “key messages”:
- Although there is not yet an effective treatment for ME/CFS, it can be more disabling than many other diseases;
- Those with the most severe ME/CFS are bedbound 24/7, and due to severe hypersensitivity to light and sound, must lie in dark and quiet rooms;
- ME/CFS can lead to severe, life-threatening malnutrition, that requires tube feeding (enteral nutrition) or nutrition delivered that is delivered directly to the bloodstream (parental nutrition).
- The main characteristic is post exertional malaise (PEM), an exacerbation of symptoms after very small (trivial) amounts of mental or physical exertion leading to temporary loss of function and abnormally delayed recovery;
- While a test that is used to assess how well a person’s heart, lungs, and muscles work during exercise – a two-day cardiopulmonary exercise test (CPET)– can provide objective proof for the abnormal response to exercise in people with ME/CFS, it can cause severe relapses, and is not the most severely ill are too ill to do this.
Following a detailed discussion of the evidence, Vink and Vink-Niese conclude:
“Dedicated, focused research using advanced medical technologies is needed to gain further understanding of the underlying disease mechanism. This will enable us to find effective pharmacological treatments and address the unmet medical needs of these very ill people.”
Vink and Vink-Niese have previously published papers:
- Confirming the conclusion by NICE that CBT is not an effective treatment for ME/CFS
- Highlighting the complexities and biological abnormalities of ME/CFS,
- Explaining that ‘Altered effort preference and deconditioning are not valid explanations of ME/CFS’.
