This post first appeared on the Mighty. Thanks to Caroline for allowing Health Rising to repost it here.
A growing number of people who had COVID-19 continue to have symptoms weeks to months later, even after they no longer test positive for the virus. Many of these “long-haulers” are unable to work and may remain so for the uncertain future. Faced with a bleak financial outlook, many long-haulers will need to apply for disability benefits.
There are several types of programs in the United States, including state, federal, and long-term disability (LTD) insurance programs, which are mostly employer-based. Each presents unique challenges for long-haulers, but with careful planning, these barriers can be surmounted.
Uncharted waters of COVID-19 long-haulers and disability
The trajectory for long-haulers currently is unknown. Will most long-haulers eventually recover, or will they develop a chronic illness that lasts indefinitely? Medicine cannot answer this question at this point because COVID is still a new disease. Uncertainty about the course of chronic COVID could make it harder to obtain disability benefits because it is impossible to predict how long someone will remain sick.
Past coronavirus epidemics, including SARS and MERS, indicate that a percentage of long-haulers will develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling neuroimmune disease often triggered by viruses, including coronaviruses.
Whether long-haulers end up being diagnosed with ME/CFS or something else is unclear, both conditions share similar challenges when seeking disability benefits.
The importance of objective evidence for disability — lessons from ME/CFS
According to Chris Snell, Ph.D. of Workwell Foundation, a non-profit that provides disability testing and publishes research on ME/CFS, having objective evidence of disability is crucial for winning a disability case with a virally-triggered illness.
In the early days of the pandemic, COVID testing was difficult to access and had a high false-negative rate. Many who had telltale symptoms of COVID are still sick but are told they never had the disease and cannot be a long-hauler. While a diagnosis is helpful when applying for disability, it is often insufficient to win a disability case. Showing the physical cause of symptoms and how they impair an ability to work matters more, regardless of the diagnosis.
Proving why someone is unable to work is the best way to win a disability case. “What prevents someone from working? It can be distilled into four basic categories — pain, fatigue, cognitive issues, and physical limitations,” says Andrew Kantor, a disability insurance lawyer based in California. Of these, fatigue is the hardest to document because there is no biological marker for it.
At Workwell Foundation, Snell writes disability reports based on cardiopulmonary exercise testing (CPET). In a webinar on disability benefits for long-haulers, he discussed how CPET provides objective evidence needed for disability cases and is used in various diseases, including congestive heart failure, pulmonary fibrosis, ME/CFS, and more. He pointed out that CPET was also used to measure activity intolerance in SARS patients.
CPET measures cardiovascular, pulmonary, and metabolic function along with workload, effort, and recovery responses. Taken in combination, CPET findings, if abnormal, offer irrefutable evidence of disability. It is impossible to fake the test, which helps to fight false claims of malingering. A CPET report is hard to argue against because it directly measures a person’s ability to work.
Many COVID long-haulers experience relapses in fatigue and other symptoms after cognitive and physical activity. A two-day CPET can capture and measure a decline in function on day two of testing.
“CPET has the ability to capture heart and lung abnormalities that may result from COVID and will provide an objective measure of functional status through the direct measurement of oxygen consumption and carbon dioxide production,” according to Stevens, the founder of Workwell Foundation. She also mentions the importance of pulmonary function testing for long-haulers.
A tilt table test or a NASA lean test can provide additional evidence by documenting problems with the autonomic nervous system commonly found in long-haulers. These tests may help to explain a rapid heart rate, heart arrhythmias, light-headedness, and/or blood pressure abnormalities. Sleep studies and neuropsychological testing also provide objective evidence to explain fatigue, brain fog, and other common long-hauler symptoms.
Tips for applying for disability benefits
Applying to the various disability benefits programs can seem overwhelming at first. Here are 10 tips from disability and ME/CFS experts on how to win a disability case.
1. Obtain objective evidence. Explore tests that help to explain symptoms, such as CPET, tilt-table testing, and neuropsychological testing. When getting a CPET, Kantor strongly recommends seeking out practitioners who understand ME/CFS and use Workwell’s 2-day test-retest protocol to avoid misinterpretation of results. Because COVID affects many body systems, long-haulers may need testing from other specialties, depending on how the disease impacted different organs, especially the heart and lungs.
2. Consider applying for benefits under the Family Medical Leave Act. The FMLA offers up to 12 weeks of leave for serious health conditions for those who meet eligibility requirements. This is often a good place to start and buys times to prepare applications for other disability benefits programs.
3. Explore state disability benefits. Five states offer disability benefits. State disability can provide another temporary safety net. These programs provide a lifeline, but ultimately long-term programs, such as LTD or SSDI, are needed for those who remain chronically ill and too disabled to work.
4. Read your long-term disability policy. Many employers offer long-term disability insurance, replacing a percentage of lost salaries due to illness. During the past four years, many insurance regulations have been rolled back, allowing for policies that provide less coverage and exclude preexisting conditions. Policies have become more restrictive of the types of conditions they cover, especially ones that cause fatigue, such as ME/CFS.
During economic downturns, insurance companies tend to deny more claims. An increase in claims during the pandemic worsens this situation.
5. Talk to a disability lawyer. Understanding an LTD insurance policy’s fine print is no easy task, especially the portions covering limitations and pre-existing conditions. Many attorneys specializing in this area offer a free consultation and can help translate LTD policy language as it applies to individual cases. Speaking to a lawyer about SSDI can also be helpful. Most attorneys specializing in these cases don’t engage with clients until the appeals phase, but it doesn’t hurt to give one a call to line up a firm and to know what to expect.
During the pandemic, layoffs could put LTD benefits at risk for some long-haulers since they are mostly tied to employment. According to Kantor, if a long-hauler had COVID before being laid off, an attorney can make a case for a post-dated claim if the disability occurred on or before the day the layoff occurred.
6. Be honest about your condition. When preparing to make a claim, be direct with employers about accommodations needed, and ensure these efforts are documented. Being honest can also avoid “gotcha” moments by insurance companies who pay private investigators to spy on claimants. If you have better and worse days, be upfront about the variation you experience in your illness, but do not minimize the limit that “bad days” place on the ability to function.
7. See your doctor regularly. COVID has made it far more difficult to see a doctor in person, leading people to access care less frequently and making it more difficult to get medical records. Although telemedicine appointments have become more widely available, they might not carry the same weight as an in-person exam and conversation with a physician.
Seeing a doctor regularly – by any means – is important for documenting medical conditions. In addition to seeing a doctor regularly, it is equally important to mention how symptoms affect daily living activities. When visiting a doctor, bring a short page noting how symptoms affect your ability to function and ask that they be added to the physician’s notes.
8. Find a supportive doctor. Unsupportive doctors can refuse to refer patients to specialists and write strong support letters. Finding a doctor willing to listen and help get necessary medical testing can make a difference in a difficult case. If long-haulers suspect ME/CFS, see a physician who specializes in this disease.
9. Request medical records. It is always a good idea to occasionally request medical records to make sure that your doctor accurately represents your condition. If records are incomplete or express doubt, patients need to know this before appealing decisions. Similarly, keep a daily journal of symptoms and how they impact function.
10. Don’t give up. Insurance companies and the Social Security Administration look for ways to reject applicants, including those who are clearly disabled. According to Kantor, many people accept a negative ruling and do not file an appeal, something insurance companies count on. While appeals may delay benefits, ultimately, it is possible to prevail with strong medical evidence.
“Long-COVID” is a new condition, but the barriers to disability benefits facing people with viral illnesses are not. Long-haulers can find many resources from the ME/CFS community on how to succeed in getting benefits.
More posts on the long haulers from Health Rising
- An Open Letter to the COVID-19 Long Hauler Community From a Person with ME/CFS – reaching out to the long haulers
- An Offering: ME/CFS Resources and Support for the COVID-19 Long Haulers – resources for the long haulers from the ME/CFS world
- The Potential for COVID-19 Long Hauler Research To Explain ME/CFS – Will it Pan Out? – find out what research is underway to understand what’s happened in Long-COVID
- A COVID-19 Long Hauler Case Report Points To ME/CFS, Autoimmunity – and IVIG Treatment – check out more intersections between ME/CFS and long-COVID and a potential treatment
- Are COVID-19 Studies Already Providing Clues for Chronic Fatigue Syndrome (ME/CFS) and the Long Haulers? – insights from early studies.
BIG (Little) Drive Powering On
Thanks so much to Caroline (an ME/CFS patient) for taking the time and energy to reach out and support our brethren – the COVID-19 long haulers. Health Rising is not just about research and treatments. There’s the need to get by as well. We try and cover it all – from getting disability to advocacy to coping. If you appreciate that kind of breadth, please support. us.
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