Myalgic Encephalomyelitis is Often Misdiagnosed

 

Patrick Freyne recently interviewed three people with myalgic encephalomyelitis (ME) for his column in the Irish Times. Patrick describes the circumstances behind the first known cases of the ME (also called chronic fatigue syndrome) in the 1950s.

Professor Brian Hughes, of Galway, Ireland explains that the term ME originated during an outbreak in a London hospital in the 1950s. The attending physicians came to the conclusion that the disorder had a neurological basis and that it was caused by a viral infection. However, ME treatment was mostly ineffective due to the inaccurate belief that the disorder was of a psychological nature.

This theory was perpetuated fifteen years later by two psychiatrists who published in the British Medical Journal. Without examining patients, the doctors declared that the 1950s outbreak was mass hysteria.

This type of thinking continued even into the ‘70s. However, ME is actually a debilitating disease affecting the immune system, the nervous system, and the production of energy. Symptoms lead to tube feeding, paralysis, cognitive dysfunction, vision impairment, and gut and sleep problems to name just a few. Yet there are no tests to aid in diagnosing ME.

Due to the misunderstanding of its severity, ME patients are very often misdiagnosed. Treatment, therefore, is either far from adequate or non-existent. As yet there is no FDA-approved treatment for the disease. In fact, ninety percent of ME patients are misdiagnosed, have not received an accurate diagnosis, or are told their symptoms are psychosomatic.

Medical Mystery

One of the patients interviewed for this article expressed her opinion that for some reason, articles on ME often depict people with a mild form of the disorder. In addition, most of the women affected by the outbreak were women. Many of the patients who were struck with the disease in the ‘50s were female nurses who worked at the hospital.

The Controversial PACE Study

 Irish physicians follow the guidelines set out by the United Kingdom’s NICE agency. Those guidelines were updated (and corrected) by discontinuing exercise therapy that involved a steady increase in physical activity (graded). Many people found these graded exercises to be harmful. Instead, it is preferable to work within the energy levels of the patients, which due to ME have been substantially reduced.

The initial guidelines were based partially on the controversial UK government-funded PACE study. The study focused on cognitive behavior therapy (CBT) and graded ME exercise therapy.

On the contrary, after re-visiting the PACE study and analyzing the results of its exercise program, treatments such as “pacing” which matches patients’ level of activity to their available energy, were recommended. Patients were also given sleep aids and appropriate sleep medication. Muscle relaxants and anti-inflammatory medications were suggested for pain management.

In the PACE study, the results they expected were not achieved. The researchers performed other analyses and discovered that there was no improvement in terms of recovery. Dr. Kindlon stated that over fifty percent of patients saw their condition worsen.

Many doctors were of the opinion that since ME could be treated with non-pharmacological methods, there was no need to study the disease. Therefore, there has been minimal biologic funding for ME in the UK

COVID’s Influence

COVID-19 and its invasion of healthcare workers have put a spotlight on the similarity between ME and long-term COVID symptoms, prompting comparisons. Professor Hughes further stated that COVID-19 has helped people understand that ME is not “in the head” but can be explained on a viral pathological level.

About Microclots

Microclots are very small blood clots recently found in Long COVID patients as well as ME/CFS patients. It has been suggested that these clots were not the cause, but the result of post-viral illness.

A Logical Explanation

William Weir, M.D. was one of the advisors for the revised NICE ME guidelines. Dr. Weir gave the example of ME beginning as a type of infection. He explains that some systems unfortunately respond to an infection by producing antibodies that fight their own tissues and cause inflammation. From there, coated with blood, they break off and form blood clots which impair circulation in capillaries.

The subsequent flow of oxygen is reduced affecting energy output. Dr. Weir further explained that this concept is also applicable to the brain causing ‘brain fog’. It applies as well to heart rate, body temperature, and other autonomic issues.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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