What to Know About Telehealth for Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is a condition marked by deep fatigue and neurological problems known as “brain fog,” with symptoms often getting worse with physical or mental exertion. It’s also called myalgic encephalomyelitis (ME). It affects an estimated 836,000 to 2.5 million Americans, many never receiving a diagnosis. This chronic condition can last for years.

CFS can be difficult to diagnose and requires regular consultation with your medical providers. As has increasingly become the norm across health care, telehealth is an accessible option for people who want to seek care for CFS when in-person appointments are unnecessary. Telehealth refers to consultations with medical providers using various telecommunication technologies, such as videoconferencing and phone calls.

When to Use Telehealth for Chronic Fatigue Syndrome

In a 2014 workshop on CFS treatment, the National Institutes of Health stated that telehealth appointments are effective for those who can’t be part of in-person clinical trials or treatments in a clinic or a healthcare provider’s office. In fact, they said more telehealth technology should be developed and supported to serve CFS patients, particularly those from underserved communities.

It can sometimes be difficult to diagnose CFS since there is no specific test that detects the condition. Instead, a diagnosis is made when other potential illnesses that cause similar symptoms are ruled out. Thankfully, a lot of these screening appointments can be done through telehealth.

Telehealth might be the best option in the following scenarios:

• Reviewing your health history: As with any disease, your healthcare provider will review your health history and family history as part of the diagnosis process. They’ll ask about your family and personal medical history to see if you a have higher risk for CFS.
• Monitoring your symptoms: Symptoms of CFS include severe fatigue that doesn’t improve with rest, post-exertional malaise (PEM) where your symptoms worsen after activity, dizziness, mental fog, and chronic pain. Telehealth can be useful for periodic check-ins with your medical provider to keep track of whether your symptoms are worsening and how they are impacting your overall quality of life.
• Following up on a past appointment: If you’ve just had a consultation with your provider, a brief virtual follow-up appointment a week or two later can be an easy and accessible way to monitor your symptoms and ask any questions about your CFS care.
• If you’re experiencing severe fatigue: CFS can be debilitating, making it hard to even get out of bed, let alone leave your home for an in-person appointment. If you are experiencing particularly bad symptoms, you may be unable to commute all the way to your healthcare provider’s office. Telehealth appointments may be best when this happens.
• Refilling your prescriptions: There is no specific medication, cure, or approved treatment for CFS. However, you may still be prescribed different medications for CFS symptoms. Your healthcare provider will most likely be able to refill any prescriptions you need through a telehealth appointment.

Benefits and Challenges

As telehealth has grown in prominence and adoption across healthcare, the question always remains: Will this replace the need for in-person visits, and is it better?

At the moment, there isn’t much research on the use of telehealth for CFS and whether it is more or less effective than traditional in-person healthcare appointments. That being said, for someone who has this condition, telehealth offers several benefits:

• Ongoing disease monitoring: A condition like CFS requires you to build a regular, trusting relationship with your medical provider. Given that CFS is a chronic condition, your provider will want to regularly assess whether your symptoms improve or worsen and update your treatment plan. Telehealth appointments make this easy. A 2014 review found that this kind of approach is ideal for people with chronic illnesses. It makes it easier for the healthcare team to have regularly updated information about your condition, and change and adjust your course of treatment if need be.
• Easy access to specialists: Given that CFS occurs along with so many other chronic conditions, your primary care provider may refer you to a rheumatologist, a neurologist, or a sleep specialist, among others. They could potentially detect other comorbid conditions that need to be treated and also help you with your specific CFS symptoms that fall under their specialties. This referral process can happen seamlessly through telehealth. You may even be able to get care from an expert who lives outside your geographic area.
• Convenience: CFS can be debilitating. If you are feeling particularly fatigued, being able to safely contact a healthcare provider from the comfort of your home makes telehealth particularly helpful. You can also save the time and money you will otherwise have spent on an in-person office visit.

The medical community is still assessing the role of telehealth in health care. The general consensus is that telehealth won’t completely replace traditional in-person care, but it will supplement it. A 2020 review showed that telehealth during the COVID-19 pandemic has been cost effective, extended specialty health services to more people, and made it easier for more people to seek more care.

However, some insurance companies may not cover telehealth visits. Not everyone has health insurance, let alone the Internet-connected devices or stable wireless network connection needed for these services. Even for those who own such devices, it may be difficult to navigate the technical difficulties that may occur with the use of telehealth technology.

How to Prepare for a Telehealth Visit for Chronic Fatigue Syndrome

Here are some tips on how to best prepare for a telehealth appointment:

• Get comfortable with your technology: Keep in mind that you may use videoconferencing technology for this appointment. Make sure you are familiar with how to log on to the system, app, or link your healthcare provider sends you. Make sure you have a working Internet connection and that any camera you are using, whether an external camera or the video capabilities of your phone or computer, is working properly. Also, make sure your computer, phone, or tablet’s software is up to date, charged, and running smoothly.
• Find a good setting: Before you hop on the call, find a quiet room or secluded space so that you can hear properly and minimize interruptions. Try to find a well-lit space so you can also see clearly. Also, make sure your Internet or WiFi connection is working properly at wherever you decide to situate yourself for the appointment.
• Be prepared with questions: Think of this as any normal medical appointment. Come prepared with questions for the provider about CFS or your symptoms. Make sure you have a list handy during the call of your medications and any other information about other conditions you have that might be affecting your CFS symptoms. It may also be a good idea to have pen and paper ready in case you need to write anything down.

What Happens During a Visit

Your telehealth visit to discuss CFS can look different than an in-person visit, depending on your symptoms and the nature of the appointment itself. Here’s what you may expect during your virtual appointment:

• Common questions that will come up: This will be like any other medical appointment you have had with a healthcare provider. As with an in-person appointment, your provider will ask you some questions. For CFS, they may ask you about the severity of your fatigue. Other questions could include: What are you able to do at the moment? What are your energy levels like and stamina for completing tasks? How long have you felt this way and had these symptoms? Do you feel any better after sleep and rest? What makes you feel worse and what makes you feel better? What happens when you overexert yourself? Are you able to think clearly?
• Keep a journal: You may want to consider keeping an activity journal and writing down your observations, so you can share them with your healthcare provider during your telehealth appointment. You may also take notes of the provider’s advice so you can review them later.
• Ordering labs and tests: While learning more about your symptoms, your provider may order lab or blood tests.
• Making a follow-up appointment: At the conclusion of the telehealth appointment, your provider may ask to schedule an in-person follow-up if a physical exam or testing is required. They may also schedule another telehealth appointment to monitor your symptoms and check in on you at a later date.

A Word From Verywell

Chronic fatigue syndrome can be a confusing, disorienting condition. It can uproot your life, making what once felt like seamless daily activities a difficult chore. This is why it’s so necessary that you seek care and stay on top of your condition. A telehealth appointment could be the perfect way to do that. You may still have to visit your provider in person at some point, though.

Think of telehealth as a useful tool to supplement your ongoing care and a way to connect with specialists and providers you normally may not be able to. If telehealth isn’t something you have access to at the moment, keep in mind it is becoming more common and may become even more accessible in the near future.