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.
Cardiopulmonary exercise tests provide the most effective assessments of functionality – the key factor in getting disability
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
People with ME/CFS have found that having a plan and getting good professional advice is critical
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.
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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.
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I found neuropsychological testing a huge waste of money. It’s very subjective. My disability company totally dismissed it.
One of the most important things to establish is the patient’s credibility; that they are not faking; that they are not gaining something they otherwise wouldn’t have if they weren’t claiming disability.
That must be an especial challenge during this time of economic challenge when so many people have lost income for other reasons than illness, due to no fault of their own.
Cameron,
I’m sorry to hear the neuropsychological testing did not help your disability case.
I was wondering if you were able to include the two-day CPET in your case?
I hope you won your case!
Right on! The spying by private investigators brought me to tears. They followed me around with two cameras from two different angles so that they could exaggerate the effort I was able to exert. I was so sick I was totally unaware of it, but when my lawyer got a copy of the videotapes, and we had them analyzed, all of that was laid bare.
It is an enormously expensive process. I pity anyone going through that now. I lost most of my savings through that hideous process.
There is a book that was written back in the mid 90s about the practices of disability companies. I can’t remember the name, but it was right on the mark about my experience.
I have heard stories like those above – when it can take years (and years). It’s so traumatizing and horrifying.
Maybe what worked for me can help others…
It took me three tries to get approval even from a (very good) private disability insurance carrier I had gotten when I was working as an MD about 10 years earlier. I had no objective abnormalities on lab tests and was not offered exercise testing as above. I don’t think I would have tried it because the effects / consequences were so severe it would have put me further in the hole for weeks or months (although we do what we have to when our lives depend on it).
I actually waited years before applying because of all the horror stories. It was a call out of the blue from a newly assigned agent, who called to meet and greet, that convinced me to apply. With no objective tests, his suggestion was to give them the whole story. I sent them every lab test and wrote pages. Then wrote 2 more letters after getting declined the first 2 times.
What ended up working for me was my family doctor’s detailed letter that started out laying out how I met the Fukuda criteria (I introduced him to them as he knew nothing about ME/CFS). His letter spelled out what I had and did not have within those criteria. It included thoughts on what else could cause these and tests that suggested it wasn’t other stuff.
The letter included my full medical history, exam and labs, and my limitations with work (I was a psychotherapist by then and struggling to work even 10 hours a week, with a description that I had to rest in between, and after a shower etc).
After I got accepted the insurers told me they’d liked that letter more than the specialist’s who I’d gone to see (a specialist in ME/CFS, whose credentials I thought might have helped).
I also ended up asking (sometimes begging) all health care professionals I’d gone to to send letters. Although I doubt the insurer cared about any of those letters from anyone who was not an MD, maybe the “bombardment” helped.
Utlimately, it may have been the fact that it was private insurance, that I’d been an MD, had had to leave my career etc…. but not every doctor cared that I’d been an MD.
On the other hand, I was also able to get disability for one of my psychotherapy clients using this same approach.
I had MD credentials even though I saw her only for psychotherapy.
I documented every objective thing I could, including the number of visits she’d made with me, and anything she’d described about what she could and could not do (and spelled them out in detail). Her lawyer gave me feedback that this was exactly the kind of letter they were looking for. I don’t recall that she had any objective lab tests. I believe this was state or federal disability. I know it wasn’t private.
Another helpful website is https://howtogeton.wordpress.com.
Court, somehow I got onto the printer friendly page – don’t ask me how – but on that page the numbered sections are buggy. If you click on the section part of it or all of it disappears and sometimes even the heading disappears. It looks like it’s supposed to be a numbered list of items that you can click on to expand or contract but that’s not how it’s working at all. Thanks for all you do for all of us!
Sorry I spelled your name wrong. That’s auto correct at work and I intended to go back and fix it and then I forgot.
— I received SSDI in 2009, and am still not sure what I received it for, since I had a number of conditions along with it.
— I was too severely bed bound (still am) to even fill out the paperwork to the point that SSA even called and asked my mother if I could talk to her from bed … I couldn’t. Finally I was turned down. But I decided to make it my greatest energy will in life to get this using the second step (appeal) … and not to have to pay a lawyer the $4K fee (at the time) by going to court (3rd step).
— I knew in my heart + mind that I would get SSDI. I could not imagine my life without it, and just felt sure I should and would. Maybe this made a difference.
— I worked on this 2 or 3 days a week through October of 2005, then was so utterly exhausted I could only lie in bed for the full month of November. Relapse? The final early days of Dec I did the rest.
— My family was very supportive by letting the dining room table have doctor reports all around it for all that time — and — my Dad drive items due right to the local SSA office.
— Although I developed severe ME/CFS in 2006 and was diagnosed as soon as it was possible to be by a well-known DC Rheumatologist, I had developed severe pain in 2000, and was diagnosed with so much else (sinusitis, migraines, fibromyalgia, severe trigger points, neck disk degeneration, severe sleep apnea, delayed circadian rhythm-morning phase, and more) that I was constantly seeing pain doctors, osteopaths, PTs, etc. until ME/CFS….and even then still had rides to PT. So I had a long, long list of doctors and visits — which you will need to list for them. They contact every provider listed and ask for medical records to be sent to them.
— I never had a cognitive test or exercise bike test or tilt table test.
— I luckily had a friend from way back who was a MD for a state’s SSDI determination, who sent me THEIR write-up of what must be shown to get SSDI for this. I don’t know if the public can get a copy — probably can.
— She told me that having one’s Congressperson and/or Senator write helps a lot. So I did that. Both wrote but one was especially helpful with follow-up calls asking the status.
— All my doctors were totally supportive. I asked for letters from that Rheumatologist, my Primary Care Doctor (who SSA had had evaluate cases before), and my eminent Osteopath (former Medical Director of an area hospital). Also from my longtime PT. All wrote strong long letters that I was 100% disabled.
— If it were not for a (heaven sent?) confidence — that my Primary Care doctor was on vacation for 3 weeks so they gave me an extension so they could get his letter when he returned … I may not have won the appeal.
— But two of my ideas I think really made a big difference.
(1). I analyzed what SSA really wanted to know. I designed a chart that had 4 columns. The first was: OBJECTIVE EVIDENCE, the second was CONDITION/DISEASE, the third was SYMPTOMS, and the 4th was WHY NO WORK IS POSSIBLE (former work, sedentary work, etc.). Vertical lines separated each column; horizontal lines each condition/disease (that could show I couldn’t work).
— I had so many MRIs, sleep studies, clinical exams, PT evaluations, etc. that it was easy to fill in Column I. These pointed to the Col. 2 condition/disease relevant to each. This pointed to my symptoms of each in Col. 3. Then, in Col. 4, the symptoms showed how something very important or basic about doing ANY kind of work, or my previous or alternative work, was true for me. In ME/CFS’ 4th column, it included: not able to stay awake for 8 hours straight (In CAPS), too exhausted to: take a shower, get dressed from pjs, drive, or walk to nearest public transportation. My Primary Care doctor liked this so much, he said he could be considered the author (my plan all along.). The Osteopath was so impressed by “my Primary Care doctor’s chart” — complimenting him : – ) — that he also attached it to HIS letter!
(2). I found online a lot of different forms that asked how much a person could do physically (steps walked, lbs lifted, remaining standing, remaining seated, etc. etc. It was important that I find different forms so SSA didn’t think this was a scheme by me. I sent a form to each SSA letter-writer with a different form, asking that s/he fill this out and attach it to his/her letter. All were willing. None had evaluated me for these things, but all were willing to guess — and guess in my favor.
By the day my Dad had driven in the envelope with my copies of the advocacy letters and of provider reports that hadn’t shown up on the list I sent them, I believe they had already decided in my favor.
— I was given that full 2009 and the prior year’s earnings in SSDI (I think this depends on when they say your disability started.). I learned that I received the most definite + longest-term disability — that “5 to 7 years until re-evaluated again” means this. It has been 11 years since then, and I have had no contact from SSA (other than an email from “Ticket to Work” that I didn’t respond to). But what I never have found out is FOR WHAT was I considered disabled. Maybe for ALL the conditions/diseases on my chart — ?
— I remain severely bed-bound — and that 11-year story (20 since first severe pain started) is another one entirely.
Seeing anonymous’ comment reminded me that I used a scale as well when I applied (and in followup over the years).
IT’s the Bells CFIDS Disability Scale
https://me-pedia.org/wiki/Bell_CFIDS_disability_scale