2020 was a year that altered many people’s health, and impacted families from death and disability. Now, six years later, clinical research has now proven COVID to have been a very dangerous disease, despite vaccines being utilized to mitigate the impacts.
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). Disability insurance companies are continuing to deny claims, similar to how Chronic Fatigue/Epstein-Barr and Fibromyalgia claims have been denied for decades. COVID symptoms vary in intensity and duration. Some appear months after the initial infection, while others arrive with the infection and never resolve. 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. Long COVID claims have suffered from many of the same problems.
Having spent four years working with this patient cohort in Washington as part of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), advocating for improvement of patient outcomes and acting as a voice for the community, we focused on physician awareness, and developing support for those who were disabled from this often insidious condition. I spent numerous sessions outside of this organization training medical providers on how to develop supporting documentation for such claims. This personal exposure has helped forged a closeness to the issues and the development of powerful relationships with medical providers. However, that community of providers is readily shrinking and replacements have not been found.
Given the vast number of people suffering from Long COVID – and the exposure that has become 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 an 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 2018 effort 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, U.S. ME/CFS Clinician Coalition – USMECFSCC listed only 21 names—with one retired and another dead. This does not bode well for this patient community and we have worked to locate other providers to support this community medically.
Our disability practice sees what happens when a patient’s treating physician doesn’t have a true understanding of ME/CFS – or the impacts of Long COVID. The problems facing long COVID patients have begun to mirror those suffered by the ME/CFS community. For years, we have advised how imperative it is to be proactive with providers and developing support, if you are unable to work due to these conditions. You must be your own best advocate, but must assemble a team of support providers.
How can you protect yourself if you are suffering from either ME/CFS or Long COVID and intend to file or have filed a disability insurance claim?
- 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 believe the severity of your sickness, start looking for a new doctor or provider. ME/CFS patients know it’s hard to find a doctor who understands their disease and how to manage it, but it’s important for your well-being and critical for your disability insurance claim. Long COVID patients must learn these lessons in advance. Be proactive.
- If you’re having trouble working and plan on filing a disability insurance claim, talk with an experienced attorney PRIOR to doing anything with your claim. Our experience with ME/CFS for over twenty years gives us the insight as to what disability insurance companies will do and how to counter their claim handling tactics and efforts to deny and delay the claim. There is too much at stake 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. Let someone guide the process so you can focus on your health.
There is much good information available to research, and educating oneself about the illness and its course as well as any disability issues can only help.
