I’m a patient who has been living with the illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for more than 12 years. I try to make sense of research on ME/CFS and occasionally point out flaws in scientific studies.
Years of living with the illness, talking to other patients and reading the literature, have convinced me that we know relatively little about ME/CFS even though it’s quite common and disabling. Uncertainty is difficult to accept for both patients and physicians and I suspect that’s one of the reasons why hype, overstatement, and unfound treatment advice flourish wildly in the ME/CFS community. People want answers even if those aren’t available yet.
What I aim to do in this blog, is to weigh the evidence and see what holds up after closer scrutiny. I hope this helps other patients to make sense of things. Living with ME/CFS can be quite overwhelming because of the many controversies and conflicting views surrounding the illness.
I explicitly call myself a skeptic even though I realize the term has gotten a bad name. It is often associated with critics who mock people because they believe in incredible ideas like homeopathy or conspiracy theories. I’m not a fan of a righteous tone.
For me skepticism refers to an appreciation of how little we know and how difficult it is to obtain reliable evidence. It’s about poking evidence, questioning it to see what holds up, and suspending judgement until we have some robust information. It’s also about understanding the history of medicine and the many times we thought we had an effective treatment when we didn’t.
I hope to touch all of these subjects in the articles on this blog. Because of the severity of my illness (I’m homebound and depend on the care of my parents) I will not be able to post regularly.
Evelien Van Den Brink
I have had ME/CFS since 1998, when I contracted bacterial pneumonia of which I only partially recovered. A few months later I got the flu and since then I have never been healthy again. I now live in a care home and am confined to bed.
In 2019 I filed a petition and gave a speech at the European Parliament in Brussels, to request funding for scientific research, so that a diagnostic test and effective treatments can be developed.
I am one of the founders of the European ME Coalition (EMEC), an advocacy group that consists of ME/CFS patients and carers who strive for high-quality scientific research.
There must be structural funding and awareness for this disease and above all, effective treatments. I have heard so many heartbreaking stories of patients. People lose their lives to this disease. It doesn’t kill you, but it makes you suffer deeply for decades. This has to change.
I am convinced that change will not come by itself. We will have to enforce it. One of the ways to achieve this is to create awareness, bit by bit. Every little step counts. I hope our blogs will make a contribution, however small, to a better understanding of ME/CFS.
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