As Long COVID Numbers Rise, Chronic Fatigue Syndrome Experts Are Few in Number

Long COVID has caused millions of people worldwide to experience many of the same symptoms as Chronic Fatigue Syndrome patients (Myalgic Encephalomyelitis aka ME/CFS). As long-term disability insurance attorneys, we represent many ME/CFS patients who have been denied disability insurance benefits from insurance companies, or have had disability insurance claims terminated.

This is familiar terrain to us, but for those new to having benefits denied and in some cases, treating physicians who dismiss their symptoms, it is an exponential increase of frustration and disbelief.   In the ME/CFS community, patients suffer from a lack of medical providers qualified and/or with exposure to these important medical concerns.

One of our firm’s partners spent four years working with this patient cohort in Washington as part of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), where he advocated for improvement of patient outcomes, physician awareness, and developing support for those who were disabled from this often insidious condition.  This personal exposure has helped forged a closeness to the issues and the development of powerful relationships with medical providers.

Given the vast number of people suffering from long COVID – and the exposure that appears to becoming more than noise, it may finally force the medical and insurance establishments to change how they address ME/CFS and long COVID, as reported in a recent article from The Atlantic, “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases.”

The Institute of Medicine estimates 836,000 to 2.5 million in the United States alone suffer from ME/CFS, but the disease is so misunderstood by laypeople and the medical profession that most people who live with it haven’t even been diagnosed.  This number is likely grossly underreported for a variety of reasons.

A gathering in 2018 to create a formal coalition focused on ME/CFS brought together only a dozen doctors, and the youngest was 60 years old. Today, the U.S. ME/CFS Clinical Coalition lists only 21 names—but one is retired and another is dead.  This does not bode well for this patient community.

We have seen in our own disability practice what happens when a patient’s treating physician doesn’t have a true understanding of ME/CFS. The problems facing long COVID patients have just begun.  It is imperative to be proactive if you are unable to work due to these conditions.

How can you protect yourself if you are suffering from either ME/CFS or long COVID?

• Pay attention to your symptoms. If your doctor says to try light exercise but a short walk leaves you winded and exhausted, stop. ME/CFS patients know pacing is their best friend. Exercise, no matter how light, may not be possible for you. Document the symptoms regularly, helping to enhance the credibility of the symptom reporting.
• If your doctor doesn’t think you’re actually sick, start looking for a new doctor. ME/CFS patients know it’s hard to find a doctor who understands their disease and how to manage it, but it’s critical for your well-being. Be proactive.
• If you’re having trouble working and plan on filing for disability, talk with us before you do anything. Our experience with ME/CFS for nearly twenty years gives us the insight as to what disability companies will do and how to counter their denials and delays. This is too important to try to do on your own.
• Put yourself and your health first. Learning how to live with a chronic illness takes time and there will be missteps along the way.

If you have questions about your long term disability insurance coverage and next steps, call our office to find out how we can help.