Historic Dogma & Myalgic Encephalomyelitis
Dr. Weir & Dr. Speight discuss Past, Present & Future
ME/CFS: Past, Present and Future is an article from August 2021 in the Special Issue of “ME/CFS – the Severely and Very Severely Affected” published by MDPI Journal.
This paper explores the historic dogma in other diseases and shows how historical biases, once exposed, can lead to a shift in society’s perception of patients. The paper then combats the dogma currently affecting people with ME. A useful paper to share with friends, family and others who come into our lives.
The day is coming when ME will be understood as a devastating, complex, acquired multi-systemic disease that requires similar specialty services as someone with multiple sclerosis, Parkinson’s, HIV/AIDS or similar chronic diseases. ME isn’t the first disease to be misrepresented in society. I found this paper enlightening and wanted to share a bit of what I learned.
The Authors
Dr. William Weir is listed on the paper as being affiliated with the Royal Free Hospital in London. He is well known in ME circles as an expert who has been involved for many years. Among other affiliations, Dr. Weir is a medical advisor to the 25% M.E. Group that supports people with Severe ME. See more info HERE.
Dr. Nigel Speight is listed on the paper as being affiliated with the University Hospital of North Durham in the UK. He is also a medical advisor to the 25% M.E. Group. Dr. Speight is also a co-author on the International Consensus Criteria as well as the International Consensus Primer. See more about him HERE.
Both doctors were also involved in another MDPI paper, Life-Threatening Malnutrition in Very Severe ME/CFS. This paper is another valuable tool to help educate about Severe ME.
The Past
I appreciate how this paper begins with the historical perspective. Having acquired ME in August 1989, I have lived some of the history that has led to ME being a marginalized disease. Understanding the history of ME, CFS and ME/CFS, has been important in shaping my view and honing my advocacy. I couldn’t agree more with this statement:
“Throughout history, a pattern tends to repeat itself when natural phenomena require explanation. Dogma usually arrives first, then it is eventually replaced by scientific understanding.”
I find it very frustrating that we have had scientific understanding for quite some time, and yet the dogma continues.
The paper gives a few examples of how ME is not the first patient group to be harmed by dogma. These include
Galileo confronting dogma with his insistence our planet was not the center of our solar system
In the mid 1800s, John Snow’s scientifically correct perceptions of cholera transmission was considered untenable by prominent members of the Royal College of Physicians.
Multiple sclerosis was considered to have a psychological basis
Helicobacter pylori infection being the cause of peptic ulcers
The paper offers more examples that bring the point home that we aren’t the first group of patients harmed by rigid thinking that ignores scientific advancement.
The Present
The paper discusses the harms to patients, including children, who are still being pushed into graded exercise therapy (GET). It cites research showing that biological abnormalities are responsible for the defects in the way muscles function stating:
“Studies in vitro of biopsied muscle from ME/CFS patients have shown metabolic defects that underpin the findings described above. Repeated electrical stimulation of isolated muscle fibres from ME/CFS patients reveals impairments of metabolism that are not seen in healthy controls [10]. Biopsied muscle is self-evidently separate from the owner’s psyche, safely excluding any influence from this source.”
In my opinion, the only role psychologists are appropriate to play in treating ME is mental health support for this devastating debilitating disease that results in one of the lowest quality of life compared to the vast majority of chronic illnesses.
Immunological abnormalities seen in ME are also discussed, including the theory that a precipitating pathogen leaves behind a broken system. There is growing evidence that people with ME may be dealing with ongoing infection. I will write about this topic in a future article.
The Future
They close the paper stating that
“proper scientific research into the physical cause(s) of ME/CFS will eventually replace the damaging influence of pseudoscientific, psychological dogma.”
I think proper scientific research is happening, but we need more funding for biological research that uses patients who are thoroughly screened to rule out other conditions and who meet the International Consensus Criteria (ICC) as has been done by those researchers in this list of ME-ICC studies.
I wrote about this paper by Dr. Speight and Dr. Weir because I think it can be useful when trying to explain why society has a misconception about ME.
Colleen
P.S.: My appreciation to David Steckel (my husband) for helpful feedback and various cat photos.
Information provided here or in comments is not to be considered medical advice