Post by Nadica (She/Her) on Dec 10, 2024 4:26:04 GMT
Why conditions like chronic fatigue syndrome and long COVID are still so mysterious - Published Dec 8, 2024
By Nicole Karlis
A disease that's prevalent in women highlights the female sex bias in medicine
In modern-day culture, it’s common to complain about being tired. But for some people, being extremely tired is just one symptom of a disease that’s increased in awareness since the COVID-19 pandemic that can severely impact everyday activities: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Though the condition has existed for a long time, it can often manifest after a COVID infection, especially as an aspect of long COVID, in which symptoms linger for months or even years.
As research has shown, many long COVID patients either have symptoms similar to chronic fatigue syndrome or have been diagnosed with the disease. But just as long COVID remains a complex mystery, so does it’s so-called sister disease, chronic fatigue syndrome. Similarly, it’s a disease that researchers feel hasn’t been taken seriously in the scientific community. Not because it’s new, but because part of its female bias, coupled with its association with extremely debilitating fatigue, which is only one aspect of the condition. Even the term CFS can be misleading.
“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,” Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study, which is the largest ME/CFS study in the world, told Salon. “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.”
That means, Ponting elaborated, that the typical ME/CFS patient is an older woman. According to the Centers for Disease Control and Prevention (CDC), having ME/CFS makes both physical and mental exertion difficult. Symptoms can include extreme fatigue, but also trouble thinking, severe tiredness and an inability to do activities, like shower or cook themselves a meal. There is no cure or treatment, and no official diagnosis process.
“Policymakers in this world are more often going to be younger males who have very little risk for this disease, and are perhaps completely unaware of the devastation that it has wrought across our population and still does through its sort of sister disease, long COVID,” Ponting said. “And without that understanding, without perhaps that personal knowledge, it flies under the radar despite affecting one in 200 people.”
One of the most peculiar aspects of chronic fatigue syndrome 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.
“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,” Ponting said. “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.”
As to why that’s the case, Ponting said the answer remains to be discovered, as the biological mechanisms of the disease are not entirely known. What is known, Ponting said, is that a majority of people come down with the disease after an infection. This could indicate that it’s the result of a problem with the immune system. There also appears to be a genetic component to the disease. In the DecodeME study, researchers are focused on studying the DNA of people with ME/CFS because they suspect some differences could reflect the biological causes of the disease.
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,” he told Salon. 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.
“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.”
Shepherd has been living with the disease for nearly 40 years. Yet he describes himself as one of the “lucky” ones who has found ways to manage his symptoms.
“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.”
Ponting said the fact that it occurs after an illness could mean that “the battery of the cell the mitochondrion has gone wrong in some way,” Ponting said. “But the shocking thing for me is that we don't know, and that's why we're doing the research.”
Shepherd has been able to find relief through “pacing,” which is energy and activity management. Currently, treatment usually also includes cognitive behavioral therapy to manage peoples’ symptoms. Graded exercise therapy, Ponting said, used to be recommended as part of the UK’s guidance, but isn’t anymore. The therapy included increasing a person’s level of activity, but it proved to be too harmful to people.
Through Ponting’s study, potential breakthroughs could be on the horizon.
“We'll show or shine a light down onto what exactly should be studied next,” Ponting said. “But what we're not going to do, unfortunately, is discover a drug that will help people manage their disease over the next few years.”
By Nicole Karlis
A disease that's prevalent in women highlights the female sex bias in medicine
In modern-day culture, it’s common to complain about being tired. But for some people, being extremely tired is just one symptom of a disease that’s increased in awareness since the COVID-19 pandemic that can severely impact everyday activities: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Though the condition has existed for a long time, it can often manifest after a COVID infection, especially as an aspect of long COVID, in which symptoms linger for months or even years.
As research has shown, many long COVID patients either have symptoms similar to chronic fatigue syndrome or have been diagnosed with the disease. But just as long COVID remains a complex mystery, so does it’s so-called sister disease, chronic fatigue syndrome. Similarly, it’s a disease that researchers feel hasn’t been taken seriously in the scientific community. Not because it’s new, but because part of its female bias, coupled with its association with extremely debilitating fatigue, which is only one aspect of the condition. Even the term CFS can be misleading.
“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,” Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study, which is the largest ME/CFS study in the world, told Salon. “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.”
That means, Ponting elaborated, that the typical ME/CFS patient is an older woman. According to the Centers for Disease Control and Prevention (CDC), having ME/CFS makes both physical and mental exertion difficult. Symptoms can include extreme fatigue, but also trouble thinking, severe tiredness and an inability to do activities, like shower or cook themselves a meal. There is no cure or treatment, and no official diagnosis process.
“Policymakers in this world are more often going to be younger males who have very little risk for this disease, and are perhaps completely unaware of the devastation that it has wrought across our population and still does through its sort of sister disease, long COVID,” Ponting said. “And without that understanding, without perhaps that personal knowledge, it flies under the radar despite affecting one in 200 people.”
One of the most peculiar aspects of chronic fatigue syndrome 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.
“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,” Ponting said. “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.”
As to why that’s the case, Ponting said the answer remains to be discovered, as the biological mechanisms of the disease are not entirely known. What is known, Ponting said, is that a majority of people come down with the disease after an infection. This could indicate that it’s the result of a problem with the immune system. There also appears to be a genetic component to the disease. In the DecodeME study, researchers are focused on studying the DNA of people with ME/CFS because they suspect some differences could reflect the biological causes of the disease.
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,” he told Salon. 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.
“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.”
Shepherd has been living with the disease for nearly 40 years. Yet he describes himself as one of the “lucky” ones who has found ways to manage his symptoms.
“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.”
Ponting said the fact that it occurs after an illness could mean that “the battery of the cell the mitochondrion has gone wrong in some way,” Ponting said. “But the shocking thing for me is that we don't know, and that's why we're doing the research.”
Shepherd has been able to find relief through “pacing,” which is energy and activity management. Currently, treatment usually also includes cognitive behavioral therapy to manage peoples’ symptoms. Graded exercise therapy, Ponting said, used to be recommended as part of the UK’s guidance, but isn’t anymore. The therapy included increasing a person’s level of activity, but it proved to be too harmful to people.
Through Ponting’s study, potential breakthroughs could be on the horizon.
“We'll show or shine a light down onto what exactly should be studied next,” Ponting said. “But what we're not going to do, unfortunately, is discover a drug that will help people manage their disease over the next few years.”