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New Chronic Fatigue Syndrome Guidelines May Impact Long-COVID Sufferers

The pandemic has led to health information taking up a major portion of the news cycle. However, it’s almost entirely focused on COVID-19, leading other healthcare news to slip under the radar. For example, the CDC’s release of new guidelines on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, has passed largely unremarked upon.

That shouldn’t be the case. ME/CFS and COVID-19 may actually be linked in ways many people don’t realize. Here’s what you need to know about ME/CFS, how it’s related to COVID-19, and how the CDC’s new guidelines about treatment may actually harm COVID-19 survivors.

What Is Chronic Fatigue Syndrome (ME/CFS)?

ME/CFS is a condition in which the patient feels seriously fatigued almost constantly, whether or not they’ve slept.

People with the condition don’t feel rested no matter how much they sleep. The fatigue is so intense that the person cannot participate in all their normal activities, including work, school, or even leisure activities and household maintenance. Symptoms tend to get significantly worse after exertion, and the bar for “exertion” can drop to something as simple as taking a shower or getting the mail. Some myalgic encephalomyelitis sufferers also experience memory problems, “brain fog” or frequent dizzy spells, and light-headedness. This has an obvious and negative impact on the patient’s quality of life.

Myalgic encephalomyelitis seems to be caused by various triggers, but infections with certain viruses are significantly correlated to developing chronic fatigue syndrome. So is mold exposure. It also appears to be connected to how the immune system reacts to stress and infection. Overall, the current consensus is that ME/CFS is likely an autoimmune condition.

This condition is more relevant than ever. Studies have found a correlation between the symptoms of people suffering from so-called “long COVID” or post-COVID-19 syndrome and people with ME/CFS. Up to 85% of people hospitalized with COVID-19 appear to experience long-term fatigue, dizziness, and brain fog in a way that aligns with ME/CFS.

While COVID-19 is still too new to firmly link to myalgic encephalomyelitis, in part because of the time-based nature of the diagnostic criteria, it appears likely that at least some people who are suffering from post-COVID-19 syndrome have developed the condition because of their infection. As a result, any changes and updates to how the medical world approaches chronic fatigue will likely affect COVID sufferers, too.

The Controversial New CDC ME/CFS Guidelines

As of May 2021, the CDC released new guidelines for treating ME/CFS. Specifically, the guidelines prioritize two specific treatments that are highly controversial in the chronic fatigue community: graded exercise therapy and cognitive behavioral therapy.

Graded exercise therapy (GET) is the process of slowly increasing the amount of exercise a person does. For myalgic encephalomyelitis, it supposedly helps the patient build up their endurance. Meanwhile, cognitive behavioral therapy is the practice of talk therapy in which the therapist helps the patient adjust their perception of and approach to certain situations. For chronic fatigue, it’s supposed to help patients “think” their way into being less tired.

The problem with the new ME/CFS guidelines is based on the same misconception about the illness. By offering therapy and exercise as treatment, the CDC implies that ME/CFS is all in the patient’s head. This directly contradicts the scientific evidence that myalgic encephalomyelitis is a physical illness triggered by disease and stress.

Furthermore, these two treatments may have been initially recommended based on flawed studies. Specifically, the 1989 PACE study recommended GET and CBT as treatments for ME/CFS based on flawed methodologies. The paper’s authors believed that ME/CFS was a “psychological” illness and pressured patients to continue exercising even if symptoms got worse. With the modern understanding of myalgic encephalomyelitis as a physical autoimmune condition, this is clearly a bad approach. It’s not possible for therapy to actually impact whether someone has ME/CFS. Furthermore, it’s been shown that increased exertion can actually make the condition worse, not better.

This makes the implementation of the new CDC guidelines actively harmful for people with ME/CFS. However, they may also impact COVID-19 sufferers.

How the New Guidelines May Cause Harm for COVID-19 Survivors

The link between COVID-19 infections and developing ME/CFS is growing stronger every day. Even if the fatigue suffered by many people after recovering from COVID-19 is not myalgic encephalomyelitis, it appears to be treated with similar methods.

As a result, the CDC guidelines may harm COVID-19 survivors by guiding insurance companies and doctors to recommend treatments that are not just ineffective but actively harmful. There are three main ways the guidelines may cause survivors to suffer:

Forcing patients to exercise can harm them. ME/CFS is worsened by stress and exertion. Exercise causes both of those things. Combined with the GET requirement to keep exercising even if symptoms worsen, this could make post-COVID-19 syndrome significantly worse for many patients.

Implementing CBT as a primary therapy can cause physicians to ignore actual treatments. By implying that CBT can resolve myalgic encephalomyelitis and similar conditions, the CDC guidelines encourage physicians to see the fatigue as a purely mental problem. This can lead them to ignore treatments that may help, such as sleep aids to promote deeper sleep and medications that address the overactive immune response.

Incorrect guidelines invalidate patient experiences and may prevent survivors from receiving benefits. Finally, many insurance companies rely on CDC guidelines to determine eligibility for treatment. By suggesting GET and CBT, the CDC reduces ME/CFS and COVID-19 survivors’ chances of having truly effective therapies covered. Patients may not even be diagnosed with the correct condition if the guidelines are followed in full.

Fight for the Treatment You Need

Surviving COVID-19 is traumatic enough on its own. If you’re one of the hundreds of thousands of people who caught COVID-19 and you now experience chronic fatigue and brain fog, you may have the added misfortune of suffering from myalgic encephalomyelitis because of the infection. If so, the new CDC guidelines could actively harm your recovery.

If you believe you’re not receiving the appropriate treatment for your fatigue, get help. Schedule your consultation with a qualified medical malpractice attorney today. They can help you understand your options and fight your insurance company to fund the treatment you need. Start taking back your life today by getting your insurance company to support you with treatments that actually work.

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