Salon magazine (USA) covers ME/CFS in an article titled ‘Why conditions like chronic fatigue syndrome and long COVID are still so mysterious'.
By Nicole Karlis, Salon Magazine
Extracts
Research has shown, many Long Covid patients either have symptoms similar to ME/CFS or have been diagnosed with the disease. But both remain a complex mystery. Similarly, it’s a disease that researchers feel hasn’t been taken seriously in the scientific community – in part due to its female bias, coupled with its association with extremely debilitating fatigue, which is only one aspect of the condition. Even the term chronic fatigue syndrome (CFS) can be misleading.
One of the most peculiar aspects of chronic fatigue syndrome (CFS) is its underlying biological mechanisms. In the world of health, people are frequently told that physical exercise is good. It’s an idea that has pervaded all of society around the world and for good reason. Scientific research has found that regular physical exercise reduces the risk of many types of cancer, heart disease, stroke and diabetes. But for ME/CFS patients, exercise is not usually recommended as a remedy — and can actually be harmful.
“The name chronic fatigue syndrome does not reflect people's symptoms as chronic fatigue is not the main feature of this disease, and for anyone to think that it is would diminish people's experiences.”
“It’s also female dominant, there are five times more people within ME who are female than are male, also more people are more likely to have ME if they're older.”
“We've been told from birth, if you're feeling out of sorts, go out outside and exercise, and we're told even in our last decades that exercise is good for us. But it is absolutely not true for this disease. It is actually reducing people's health, quality of life, and reduces their ability to move.”
Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study
Dr. Charles Shepherd, a medical advisor to the ME Association in the United Kingdom, was diagnosed with ME/CFS after he contracted chickenpox from a patient.
“I had a pretty nasty dose of chicken pox. All the sort of symptoms of chicken pox went away, but I just continued to feel unwell — not just a bit unwell, but quite unwell.”
“It took me two years to get a diagnosis because I didn't know what was going wrong,” he said. “I wasn't taught about this illness when I was at medical school, and so again, very common still today, and I did all the all the wrong things from the point of view of management.”
As a doctor, it was puzzling to him. He had debilitating fatigue that was exacerbated by physical and mental activity. Resting, he said, also didn’t help. He also had post-exertional malaise, which is a worsening of symptoms after minimal activity, which is a hallmark symptom of ME/CFS.
“The output of the prognosis is not good,” Shepherd said. “Probably only around about five to 10 percent of people make a full and sustained total recovery.”
Dr Charles Shepherd
Shepherd has been able to find relief through “pacing,” which is energy and activity management.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Further information
Since the pandemic, Dr Shepherd (MEA Hon. Medical Adviser) has commented on many occasions that there are important clinical and pathological overlaps between ME/CFS and Long Covid. Please see the comprehensive information booklet on this subject below.
