- A study published in April suggests that people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are less likely to reach out for social support than others with chronic health conditions.
- Treatment for ME/CFS often involves treating symptoms associated with it, like chronic pain.
- People who contract COVID-19 may develop ME/CFS, which opened the doors for more interest in and funding for research.
During the pandemic, people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) were less likely to reach out for social support than people with other diseases, according to a new study.
The researchers from France sent out a questionnaire between April 15 to May 11, 2020, when the country was experiencing an initial COVID-19 lockdown to see how people with ME/CFS and other conditions coped with their condition while being in confinement. People with ME/CFS reached out for support at lower rates than people with conditions like cancer, kidney failure, heart diseases, and chronic obstructive bronchitis.
The study was published in the journal Health and Social Care in the Community this April.
Because someone’s mental health can play a role in the development of and flares of chronic illness, researchers stressed the importance of understanding the way people cope with both, the condition and their mental health, in relation to one another. “Ways of dealing with the overall illness cannot be separated from those of dealing with associated emotional distress,” the researchers wrote.
Since fatigue is a symptom of ME/CFS, staying connected with other people and practicing self-care may be a challenge for people with this condition. “The average person with ME/CFS has very limited energy capacity, so folks are forced to these decisions that are like, ‘Do I take a shower, or do I make myself dinner?'” Emily Taylor, MA, the director of advocacy and community relations for Solve ME/CFS Initiative, whose mother lives with this condition, tells Get Meds Info.
What Is ME/CFS?
ME/CFS is a complex condition with no specific cause.
“It is a label that has been given to people because we don’t know how to define their symptoms in any other way right,” Alexa Meara, MD, a rheumatologist at Ohio State University Wexner Medical Center, tells Get Meds Info. “It’s not tiredness. It’s not insomnia. It’s not a sleep problem.” Some people develop ME/CFS after being sick with another condition, including COVID-19. The following may play a role in the development of ME/CFS:
- Viral infections
- Immune system problems
- Hormonal imbalances
- Physical and/or emotional trauma
People with ME/CFS often do not “look outwardly sick,” but the condition can be very disruptive. The Centers for Disease Control and Prevention shares that ME/CFS can affect people’s lives in some of the following ways:
- People with ME/CFS are not able to function the same way they did before they became ill.
- ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
- ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
- ME/CFS can last for years and sometimes leads to serious disability.
- At least one in four ME/CFS patients is bed- or house-bound.
Currently, despite how disabling this condition can be, medical treatment for ME/CFS is limited. “There is no FDA-approved treatment for ME/CFS,” Taylor says. “So, a lot of people use a lot of different medications off-label, and some of those medications are antivirals.” Because some people with ME/CFS use antiviral medication to manage their symptoms, Taylor says many were forced to deal with shortages since their medications are used to treat people who contract COVID-19.
Treatments for ME/CFS, both medication and self-care practices, target specific symptoms associated with the condition like issues with sleep, chronic pain, and mental health issues.
The Importance of Community
During the COVID-19 pandemic, many people have experienced loneliness. However, experts say people with ME/CFS may have trouble reaching out to others out of the worry that others will doubt how disabling the condition can be. In one article published in the Healthcare journal, researchers outlined the isolating implications of living with ME/CFS.
One of their suggestions to manage isolation is to find support online from others who live with ME/CFS. “The internet can direct the person to sites related to the chronic illness that he is battling, and some associations have both national and local support groups according to not only to the patient’s illness but also their locations and ability to be mobile,” the researchers wrote.
Other people with ME/CFS may share helpful tips as well. “What’s so important is the encouragement and empathy from others, [and] to know that you are not alone and that you receive compassion support tips and tricks,” Kate Burke, MD, the senior medical advisor at PatientsLikeMe, tells Get Meds Info.
Keeping in contact with friends and family, peer counseling, and a cognitive behavioral approach to illness can all help with feelings of isolation as well.
People With ME/CFS May Experience Trust Issues
In addition to a lack of energy keeping people with ME/CFS from socializing, some individuals may also withdraw due to trust issues. The researchers from the study published in the Health and Social Care journal found that people with ME/CFS were more likely to turn to their peers for support than to health professionals to find coping strategies for managing their condition.
“Negative social representations linked to chronic fatigue, the lack of medical cure and guidelines, likely contributes to reinforce peer support versus physician support,” the researchers wrote.
Taylor believes that people with ME/CFS may also distrust other figures in their life who they think are not taking their symptoms seriously. “There’s no way that people don’t internalize that and translate that to their other interactions with other people who kind of represent that position of authority, even in their own family or their own friends,” Taylor says.
The perceived lack of care and misunderstanding from health professionals may stem from the limited options available to treat ME/CFS. “I think there are a lot of doctors that are not trying to dismiss the patient, but they don’t know what to do, so it feels like a dismissal,” Meara says.
With conditions where chronic fatigue is a symptom of another illness like vasculitis, Meara says she may try to help a patient manage their fatigue by increasing medication to treat their vasculitis. When there is no underlying condition to chronic fatigue, there are not as many straightforward options that she and other doctors trying to help people manage a patient’s ME/CFS can take.
What This Means For You
If someone in your life lives with ME/CFS, an important step in supporting them is to show empathy for the challenges and symptoms they face. Fatigue is a key characteristic of ME/CFS, so if someone with this condition has to cancel on plans, you should not hold this against them, and you should continue to include them in activities, even if they have to cancel or leave early. If you have ME/CFS, looking for support groups and tips from people with the condition online can be a good place to start.
The Overlap Between ME/CFS and COVID-19
Research suggests that some COVID-19 long haulers may develop or have an illness similar to ME/CFS. Anthony Fauci, MD, the chief medical advisor to U.S. President Joe Biden and the director of the National Institute of Allergy and Infectious Diseases, said to Medscape last July that “it’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
In an article published in the Frontiers in Medicine journal, researchers argue that it is crucial to study all people who have contracted COVID-19, “even those with only mild initial illnesses, and to study the recovery period and the long-term health consequences of COVID-19,” to better understand how to prevent long COVID-19. The researchers also note that “the direct and indirect economic costs of [ME/CFS] to society are estimated to be between $17 and $24 billion each year.”
As a result of ongoing and future research into COVID-19, Meara believes that there will be advancements in research to help find better treatment options for invisible illnesses associated with long COVID-19, which also includes fibromyalgia and postural orthostatic tachycardia syndrome (POTS). “We’re going to start to break chronic fatigue and fibromyalgia because now there’s a lot of money into COVID,” Meara says. “It’s an unfortunate positive byproduct, maybe the silver lining, one might say, but it is forcing medicine to have to deal with problems that we haven’t dealt with for many years.”
The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.