I found Health Rising a few years ago, but I only started subscribing to receive it in my inbox in mid-2022. Feeling like I had found the best-centralized source of information on long COVID and ME/CFS, I reached out to Cort to make a recurring donation. We got to emailing back and forth and I shared that I hoped to increase my meager donation if and when my employer-based disability case was overturned on appeal and I had more income coming in.
Luckily, it was eventually overturned and Cort asked if I would write up a piece about what the process was like for Health Rising.
Many of you will be familiar with a chronic illness story like mine, unfortunately: healthy, active woman in her mid-40s contracts a virus, which eventually develops into a post-viral illness, and her whole life changes.
The other aspect that probably isn’t unique is being denied either employer-based disability benefits or social security disability benefits (for those in the U.S.) because the written notes and testimonies of your doctors (many of whom are top specialists in their field), and/or the findings from your test results with loose or no clear dots connecting them, were not enough to prove that you were functionally unable to carry out your particular job responsibilities, or the duties of any job for that matter.
You were forced to work, full-time or part-time, and it was way more than your brain and body could handle, making your condition much worse to the point of possibly permanently disabling you. Or you were so very ill that you knew you simply could not force yourself to work, and maybe you fell onto hard times, losing any savings you may have had and/or possibly your home.
My story weaves through so much of this. Despite my eventual approval for benefits, the long and arduous process resulted in feelings of demoralization, increased exhaustion and exacerbation of the symptoms of my illness, and a draining of financial resources that had me very close to giving up several times.
What is often overlooked in articles about obtaining disability benefits when there are no widely available diagnostic tests to prove the existence of your pervasive chronic illness are two important aspects: 1) that it takes an enormous toll on you, physically, mentally, and emotionally and 2) that you need to have money to prove that you need money to be able to survive.
My Story – COVID-19
I contracted what was believed by both me and my primary care doctor at the time to be COVID-19 back in late March 2020. My symptoms were mostly shortness of breath (some days severe), “lung burn,” and fatigue. My initial symptoms lasted for over a month. I took two weeks of federal paid COVID leave at the end of April and tried to focus on resting. In May, I returned to work as a non-profit executive for an agency serving victims of domestic violence and human trafficking (hello, stress!).
Seemingly out of nowhere, all of my symptoms went away the last week of May. I was so relieved to have finally ‘kicked’ this virus (or whatever this was). For three weeks, I lived my life as I did pre-COVID. I worked, I exercised, I hiked, I went running, I drank a bit of alcohol. All was great.
Then in mid-June, days after my 45th birthday, I relapsed and all of my symptoms returned: extreme fatigue, shortness of breath, lung burn, losing my voice intermittently, brain fog, burning/tingling limbs. I also started having new symptoms: significant gait/coordination problems, muscle weakness in my legs, and cognitive issues like using incorrect words for things, or wrong verb tenses.
I was crestfallen. A trip to the emergency room resulted in a CT scan of my lungs and bloodwork, all of which came back normal. I shared all of this during a routine appointment with my headache specialist (I have suffered from migraines on and off for many years), and she was concerned. She immediately believed I had had COVID in spite of my negative nasal swab in late March and negative antibody test toward the end of May. I was totally perplexed.
Through June and July 2020, I kept working. I had a high-stress, high-needs job, and it didn’t really occur to me to stop working entirely. My husband had a planned retirement from his job of 34 years at the end of March, and we relied on my income to pay many of the bills while we waited for his pension to kick in. I was working remotely, which offered little relief; I had many days where the fatigue would land me on the couch in the middle of the workday. At night, I would lay down and stare into space, my limbs on fire, my brain completely spent.
I stopped working in mid-August 2020 after one of my doctors who knows a lot about my work called me and said, “Amy, if you don’t stop working, you will never recover.” It scared me, but it also gave me permission to surrender. I was so fortunate to have an amazing boss – one of my mentors in life – and incredibly supportive colleagues. I assumed I’d be out of work for a month; I ended up being out for 4.5 months.
Short-term Disability Application
I first applied for employer-based short-term disability in late August 2020, not long after I went out on leave. After much back and forth sending the insurer copies of test results and doctors’ notes and letters, I received a denial in November 2020.
At that point, all I had to show for my long COVID journey was an MRI from July that showed a new brain lesion in the corpus callosum region of my brain that hadn’t been there on a previous MRI, and a subjective diagnosis of ME/CFS made by both my rheumatologist and my new infectious disease doctor (a longtime specialist in ME/CFS).
In the denial, the insurer stated: “There is no evidence of abnormal exam findings or diagnostic test results that indicate you were incapable of performing the demands of your sedentary occupation as a Chief Program Officer…there is no medical information to support a disabling condition preventing your ability to work and no benefits are payable.”
It was tormenting to receive this denial. I was so physically ill, and I had spent several months seeking out caring and knowledgeable medical experts who believed me, and yet here was an insurance company essentially saying, “your doctors are wrong; you are well enough to work.”
The insurance company’s “independent” physician consultant (anything but independent, since he was paid by the insurance company itself) opined that I was not disabled enough to receive benefits, even though my infectious disease doctor, who informed the insurer in writing that she had frequently been a principal investigator on NIH-funded research on ME/CFS, had claimed that I was. It felt like a cruel injustice.
Furthermore, I resented that my job had been referred to as “sedentary”; yes, I performed most of my job in a seated position, but I was managing a department of 55 staff, advising my CEO on matters related to agency finances and governance, and serving as an expert on victimization on legislative and community panels/webinars. My daily color-coded schedule was jam-packed with meetings; I had few bathroom breaks, let alone rest breaks, and my job required constant talking, listening, thinking, decision-making, and crisis management. It was clear that the insurer’s ableist approach meant only looking at the physical demands of any person’s job and not the cognitive or emotional demands.
I began working on my appeal immediately in November 2020, submitting a three-page appeal letter outlining the timeline of my illness as well as all of my diagnostic findings up to that point, which included the brain lesion, a new asthma diagnosis, Epstein Barr virus reactivation, and T cell dysfunction.
By this time, I had also begun receiving services at a newly opened Post-COVID Center operating out of a large local hospital. Although I never had a positive COVID test, they accepted me for treatment based on the constellation of symptoms I was experiencing (the bizarre “clincher” was that I had dark purple spots under several of my fingernails; they hadn’t seen anything like it and they believed that this was related to COVID).
With my appeal, I also included copies of studies published about both long COVID and ME/CFS, including one specifically called, “COVID-19 and Involvement of the Corpus Callosum: Potential Effect of the Cytokine Storm?”
As was the case when I submitted the initial application, the next several months after I submitted the appeal involved a tremendous amount of back-and-forth communication (and several miscommunications) with the insurer as they constantly asked for more and more information. They were in touch several times with all of my doctors – including doctors I only saw once or who didn’t really help me. I always responded promptly to the insurer and along the way, sent even more test results (during this time, I was diagnosed with MCAS after a 24-hour urine test and small fiber neuropathy after a punch biopsy).
During this 4.5-month leave from work, my husband and I had gone into $10k of debt just trying to pay our bills, and we wound up taking an early partial distribution from his 401k retirement savings just to stay afloat, which was upsetting.
Eventually, since the appeal was taking so long, I was forced to return to work after 4.5 months, feeling not much better than I had when I went out on leave in August. I returned part-time in January 2021. For the next five months, I teetered between p/t and f/t hours as my symptoms waxed and waned. Either way, I was completely depleted physically and cognitively at the end of each workday. I was working from home still and tried to take as many rest breaks as a I could throughout the day, but it was akin to recharging your cell phone battery up to 10% only and then trying to get 80-100% out of it. It was untenable.
Final Short-Term Disability Denial
In the middle of this stretch of time, I received the final denial of my STD application. It arrived on March 25, 2021 – my one-year COVID anniversary, which stung extra hard. The denial letter detailed all of the insurer’s attempted and actual conversations with my many different doctors up to that point, including a lot of irrelevant information gleaned from doctors I had long since stopped seeing. It felt very much like they were setting up the dominoes to knock them all down.
When the independent physician consultant made one final attempt to communicate with both my infectious disease doctor and the doctor at the Post-COVID Center, both responded with robust letters describing my symptoms and impairment. I was so grateful for their efforts on my behalf, though ultimately, it did not work.
The insurer maintained that even though I met the criteria for post-viral ME/CFS as explained by my infectious disease doctor, “there was no clinical evidence of a positive COVID test” and “an extensive fatigue panel was not available” (I’m not even sure what that is), and that hence “no restrictions or limitations were supported as there were no clinical findings suggestive of impairment.”
The Patterson Treatment
Around the time of the appeal denial, I had started engaging with the Chronic COVID Treatment Center (CCTC, part of Dr. Bruce Patterson’s company, IncellDx). I was about to undergo their cytokine testing and hopefully begin treatment that might help me feel and function better. I tried not to let the appeal denial get me down too much, as I was working mostly f/t and feeling hopeful for the first time in a year.
I did consult with Andrew Kantor of Kantor & Kantor, a disability law firm that had a wealth of experience fighting for benefits for pwME. Andrew advised that short-term disability denials were not worth fighting with legal action, since the benefit amount would be entirely eaten up by legal fees. He also advised that if I should become disabled again, to pursue long-term disability (LTD), even if I were to be denied STD again, and to consult with them or another disability law firm if I needed any help. I left his tremendously helpful email parked in my inbox in case I ever needed it again, and I attempted to move on from the painful and exhausting STD ordeal.
Between April and October 2021, I had undergone a few rounds of cytokine testing with IncellDx and was prescribed a treatment cocktail of maraviroc, ivermectin, and pravastatin. After a few months, I felt so much better. I would estimate that I got to about 80% recovery. I was working full-time with slight, manageable fatigue, and I was steadily increasing my steps each day. I got up to about 7,500 steps per day and was even able to do some hiking again with my husband. I was thrilled to finally be turning the corner on long COVID.
In mid-October, I had a particularly stressful and adrenaline-pumping week at work, followed by a planned weekend hiking trip. I could feel that intense fatigue setting in again, but I pushed through it.
The following week, I crashed precipitously. I couldn’t work at all for over a week and all of my worst symptoms – fatigue, shortness of breath, neuropathy – came back with a vengeance. The cocktail that had just months before given me what felt like an almost miraculous recovery suddenly stopped working. All of my conditioning gains were immediately lost; I was back down to 500-800 steps a day, just surviving.
The CCTC tested me again and changed up my medications, but nothing worked after that. I pushed myself through work, thinking I’d eventually bounce back, but by the end of January, I was forced to go back to part-time hours. I worked part-time until May 2022, when I had to face the fact that even with part-time hours, I was making myself sicker. When all of your free time outside of work is spent resting in a semi-catatonic state, something has to give. My brain and my body had had enough.
By the time I went out on leave again toward the end of May 2022, my employer had a new short- and long-term disability carrier and I hoped that this meant things would go better than they did the last time.
I had a new functional medicine doctor who was very informed about long COVID, and I was still working with the infectious disease specialist. I had new test results and findings that pointed to significant mitochondrial dysfunction as well as high levels of inflammation and dysfunction on my gut biome.
Both of these doctors completed short-term disability health assessments on my behalf and within weeks, I once again received a denial, this time stating that neither doctor listed any COVID symptoms on the information they sent in. My functional medicine doctor rightly pointed out that their form had no space at all to describe a diagnosis or symptoms, and the insurer never asked him for additional details.
By this time, I was a bit more prepared for the emotional letdown of being denied and was weighing my options. When I asked my infectious disease doctor what she thought, she said she was seeing a lot more denials than she had prior to COVID, and that at this point, my only recourse might be to go for the two-day cardiopulmonary exercise test (CPET). I had previously learned about this test through webinars hosted by the Workwell Foundation.
The Two-Day Exercise Test
For a few weeks, my husband and I weighed the pros and the potentially significant cons of obtaining the test, including the price tag ($2,800 for the test, plus travel, two nights of lodging, and food costs) and the very real fear that the test itself could set my illness back even further. What if I became bedbound, too ill to take care of my basic bodily needs? My husband was already picking up extra shifts at his post-retirement job and handling most of the chores both inside and outside the house. If he had to become my full-time caretaker, what would our lives become?
I was nervous and I searched for as much information as I could online to help make the decision, including a previous article here on Health Rising, “Decoding the 2-Day CPET”, which was tremendously helpful in demystifying the experience of getting the test. It was there that I learned that while some patients have a difficult and prolonged recovery, some 50% of patients undergoing the CPET recover back to baseline within one week.
Ultimately, I felt that although risky, I would likely eventually recover. I reached out to Dr. Betsy Keller at Ithaca College, about a 3-4 hour drive from where I live in New York State. Dr. Keller’s name was familiar to me by that point through studies she conducted and co-authored on ME/CFS and the CPET. Dr. Keller responded quickly and sent me a lot of information on what to expect before, during, and after the test. I scheduled the test for late July 2022 and tried to quell my anxiety.
The test was physically challenging, but Dr. Keller and an assistant walked me through the whole thing. In between parts of the test, she gave me tidbits of education on what the test was measuring and what it would mean for my recovery. I felt very comforted by her knowledge and willingness to share it with me.
Back home, it took me just about two weeks to return to my pre-test baseline with lots of rest and pacing. Within that time, I received the test report from Dr. Keller: 12 pages filled with key findings, all backed by copious amounts of science and math from peer-reviewed sources. I cried when I first read the report, bittersweet tears, because on the one hand, it more than validated what I knew was going on in my body, and on the other hand, because it was hard to read certain lines, such as the one that said that my VO2 peak from test 1 was “equivalent to the average, inactive 76-year-old female.” (I am 47 now and was extremely active prior to COVID).
Dr. Keller’s summary stated that my ability to carry out normal daily activities was very limited and “renders her unable to perform even sedentary-level work on a sustained basis.” In another section, the report stated that I created just about enough energy to recline and read, but not enough energy to walk around a workplace or drive to work. The major findings were as follows (taken directly from the report):
Low aerobic and anaerobic thresholds, post-exertion malaise, autonomic dysfunction:
- Low VO2peak. VO2peak classifies her with moderate to severe impairment.
- Low Ventilatory/Anaerobic threshold (VAT). VAT classifies her with moderate to severe impairment.
- Ventilatory limitation. Patient demonstrated low ventilation volume consistent with ventilatory muscle fatigue and/or lung obstruction.
- Hypocapnia. Indicated by end tidal CO2 (PetCO2) below 35 mmHg.
- Dysautonomia indicated by abnormal blood pressure and ventilatory responses during exercise.
- Exertion intolerance indicated by abnormal symptoms associated with exertion.
- Post exertion malaise indicated by prolonged exacerbation of symptom severity that persisted and worsened following exertion.
Short-Term Disability (STD) Appeal
Since I anticipated that it might take me a long time to recover from the CPET, I had written the bulk of the STD appeal response letter prior to going for the test. Everything I write (including this essay) takes me many weeks since I can only withstand 30 or so minutes of computer work at a time. Before drafting the letter, I reviewed materials I held on to from a 2021 webinar sponsored by the Workwell Foundation that included Andrew Kantor, the attorney with whom I had previously consulted. A replay of this webinar along with other helpful resources on applying for disability benefits can be found here.
I decided to take a different approach to this appeal letter and to channel my days as a non-profit grant writer, when I would pore over requests for proposals (RFPs) from funders to understand exactly what they were asking and to focus my writing on responding to these things directly. In this case, my goal was to re-read the STD denial letter carefully, especially the information they said was missing in order for them to make a determination in my favor, and to respond as specifically as I could to their points. I also paid extra attention to their bulleted list of what an appeal should include.
I opened the letter with all of the necessary information: name, DOB, claim number (and was sure to include my name and claim number on every page of the letter and on every document I included in the packet). I then cited the insurer’s own claims from my denial letter and refuted them or provided the missing details. I also decided to present the basic findings from the CPET early in the letter and in bold font, to draw their attention to the one thing in my appeal that was going to be difficult for them to deny: proof of functional impairment.
My test results showed that my ability to carry out normal daily activities is “very limited” and I am rendered “unable to perform even sedentary-level work on a sustained basis.”
Then I included a detailed, bulleted timeline of all of my diagnostic findings to date:
Timeline of illness/diagnostic findings:
- March 25, 2020: first COVID symptoms appear, including shortness of breath, cough, and fever. Fatigue, lung burn, and diarrhea also came within a few days. PCP advised me to stay home and quarantine.
- June 13, 2020, and beyond: After seemingly recovering from the initial infection, I began to have a return of symptoms, including debilitating fatigue, shortness of breath, lung burn, hoarseness, burning in my limbs, coordination/gait issues, concentration and word retrieval issues, memory loss. My fingernails began turning purple (known as “COVID toes”; photos included).
- July 2, 2020: based on neurological symptoms listed above, my longstanding headache specialist (neurologist) sent me for an MRI of the brain, which showed a lesion in the posterior corpus callosum area of the brain that was not previously seen on an MRI from October 2018.
- August 18, 2020: rheumatologist diagnosed me with ME/CFS based on presenting symptoms and other rheumatological and infectious disease testing coming back normal.
- September 29, 2020: I began seeing ME/infectious disease specialist in NYC. Lab blood tests ordered on 9/30/20 revealed a reactivation of a previous Epstein-Barr virus (now known to be reactivated by the SARS-COV-2 virus; see attached article) and a T-cell abnormality. Doctor stated that the Epstein-Barr reactivation was likely caused by the COVID infection and that the T-cell abnormality is possibly what made me, a previously fit and healthy 45-year-old woman, a long haul COVID patient.
- October 7, 2020: I had a pulmonary function test, and pulmonologist diagnosed me and began treating me for asthma. I had never in my life had any respiratory conditions or illnesses until post-COVID.
- December 9, 2020: Infectious disease doctor ordered 24-hour urine test which detected higher than normal leukotriene levels, indicating mast cell activation syndrome (MCAS), also a condition known to result from SARS-COV-2 infection (article attached).
- March 5, 2021: due to ongoing complaints of neuropathy, involving burning and buzzing in my arms, legs, hands, and feet, neurologist took samples for punch biopsy, which detected small fiber neuropathy.
- April 19, 2021: newly developed lab work (IncellDx) shows several elevated cytokines, and a long hauler index of 43.9 (anything higher than a 5 indicates a COVID long hauler; note: these were previous levels used by IncellDx that are no longer in effect).
- April 26, 2021: follow-up lab work shows elevated tryptase level, also consistent with prior MCAS diagnosis.
- August 6, 2021: one-year follow-up MRI of the brain indicating that small lesion that was present on 7/2/20 MRI is still present one year later.
- February 14, 2022: follow up lab work continues to show low T cell function – as per doctor’s note attached, indicative of ME/CFS – and elevated cytokine and collagen antibodies. In addition, Epstein-Barr virus continues to be reactivated, which can contribute to severe fatigue. Doctor’s note indicates that these results support my condition for disability purposes.
- April 19, 2022: upon seeing new functional medicine doctor, he ordered various blood and stool tests which showed a number of cellular and gastrointestinal issues, pointing to low energy production and conversion, and inflammation, including:
From Viome testing
- Inflammatory activity: not optimal (43 out of 100)
- Gut lining: not optimal (64 out of 100)
- Oxalate Metabolism Pathways: not optimal
- Cellular health: not optimal (15 out of 100)
- Mitochondrial health: not optimal (17 out of 100)
- Mitochondrial biogenesis pathways: not optimal
- Energy production pathways: not optimal
- Immune system activation: not optimal
From Genova testing
- Abnormal metabolic and n-Butyrate findings (both below reference range)
- Abnormal finding in the mitochondrial respiratory chain complex-I and the II+III complexes.
- July 25 and 26, 2022: Referred for 2-day Cardiopulmonary Exercise Test (CPET) with Dr. Betsy Keller/Ithaca College Health Sciences to determine level of energy impairment. Test shows moderate to severe impairment with regard to energy production and output. Supporting studies have confirmed that those with my level of impairment are unable to perform even sedentary, part-time work.
After this timeline, I also included a timeline of my work status since my illness started, as the insurer stated in their denial letter that it was unclear why my first day of leave was in May 2022 when I stated that my illness began in 2020. I remember Andrew Kantor saying that it is helpful to demonstrate to an insurer one’s attempts to work and to seek accommodations, even if ultimately one was still unable to sustain employment. I outlined my roller coaster of full-time, part-time, and disability leave over the 2+ years since contracting COVID in an attempt to show just how much I tried to make employment work for me but ultimately could not.
Lastly, after signing my name, I included a bulleted list of all of the documents I would be enclosing with the appeal in order of saliency: test results, photographs, doctors’ clinical notes, and two articles making the link between Epstein-Barr reactivation, MCAS, and long COVID.
In mid-August, I sent this whole packet off by U.S. Postal Service certified/return receipt requested (I started doing that early in my illness whenever I sent claims or documents to insurers, otherwise I found that they would sometimes claim they hadn’t received the documents. Add these costs to the already considerable expenses of becoming disabled and having to prove it). I prepared to wait for several months; I had been conditioned to expect that kind of wait.
I was quite surprised to learn in late September that I had finally been APPROVED for STD. I was quite emotional when I received the news via a short video message that the insurer sent me.
One of my doctors informed me that the insurer’s “independent” physician called him earlier in September to question how the results of the CPET could mean I was incapable of working a desk job. As thorough a report as Dr. Keller compiled, it was clear this physician had not read it through. Luckily, my doctor was able to explain that the level of dysfunction shown by the test means that my body was not pushing enough oxygen to my muscles and organs (including my brain!) when I needed it most, rendering any job at all impossible to do for more than a few minutes at a time.
Although I felt a sense of relief when I learned I had been approved, I continued to hold my breath and to live with a certain amount of anxiety until the end of STD. This was because it was only approved for small chunks of time, even retroactively. The “dance” of having to constantly prove that one is still disabled, still receiving regular medical care, and still in need of benefits continued to exhaust me. I also felt very bad having to continuously be in touch with my very busy doctors for more and more information. At some point in early November, it was clear the insurer would pay my STD through the end of the eligibility period (end of November) and the STD representative sent me the application for LTD to get that ball rolling.
Long Term Disability
The anxiety and stress I felt around winning the short-term disability appeal started to rattle my brain with regard to obtaining long-term disability. To try to get ahead of this, I did an intake with Kantor & Kantor just to see where I stood and what my rights were, and if possible, to secure representation for the LTD process before having to get to an appeal stage for that also.
The follow-up call I had with one of their attorneys was very reassuring: he told me that they were impressed with the appeal I compiled for STD and that they did not think I needed them at this point; that I had enough “proof” in their view to secure LTD. When I asked if I should maybe go for cognitive testing as well, just to strengthen my case further, he advised me not to spend any more money out of pocket than I already had. In other words, wait for the insurer to make the next move.
The night before Thanksgiving, I received a call from the LTD representative, who had several follow-up questions for me regarding my application. What should have been a ten-minute phone call turned into an hour, but for the best reasons: she was treating me like a human being. Her questions were thoughtfully and kindly worded, and as Andrew Kantor had advised in his webinar, I laid my cards out on the table and was honest with her about my limitations and about being unsure if/when I could return to my very stressful job.
I told her that I had copies of all of my tests and notes, since none of that was requested with the LTD application; she thanked me and said they would be reviewing my STD file and getting in touch with my doctors, so she didn’t need anything more from me at the moment. She also explained that, if approved, I would only need to submit updated medical information every three months or so in the first year, and then annually after that. What a huge relief! When the call was ending, she said I’d likely hear from them within a few weeks. She kept her word, and within a few weeks, I received news of my LTD approval.
It is hard to put into words how validating and calming it was for me to finally receive that approval. Aside from the concrete need to pay off some of the debt my husband and I had incurred during my months of not working, I would finally be able to get the proper rest I needed.
The medium to high level of anxiety I lived with throughout all those months was keeping me from properly pacing and calming down my nervous system enough to affect even minor improvements. There were many days that my brain was tempted to send off the next piece of information, or respond to the insurer’s latest request, and I had to check in with my body and recognize that I just did not have it in me that day.
I cried a lot to my husband, and I almost gave up a few times. However, one piece of advice from Andrew Kantor was not to give up, that insurers count on many legitimately sick folks to accept a negative ruling and to decline to file an appeal. It feels profoundly cruel and unfair that the fight for these benefits would come at the expense of our health, and many with ME/CFS and long COVID understandably do not have the physical or emotional energy to see the process through. Sometimes surrender is the ‘win’ when it comes to these fatiguing, debilitating illnesses. I do wish that there were more resources to help us – some of the sickest folks around – apply and advocate for the benefits we need to survive.
I recognize that this essay may have limited utility for those who need benefits but who do not have the financial or physical resources (including energy levels and the ability to travel to a test site) to access a test such as the CPET (note: I am currently in the last stage of appeals with my health insurance company to get them to cover the significant cost of the exam).
I am not sure that I would have won the disability appeal without having gone for this intensive testing, even though it is astounding to me to think that the long list of diagnostic findings I had prior to the CPET would not have been enough. Hopefully, as more and more studies are published and the appropriate dots are connected, some of these other test findings will be enough to establish disabling illness.
One last word about the CPET, for anyone on the fence about getting it: I did not anticipate how helpful the test results would be to me outside of applying for and obtaining disability benefits. For example, the report states that I should aim not to exceed a heart rate of 107 bpm. This directive helped me to seek out a new fitness tracker that would alert me when I exceeded this threshold, and that has been enormously helpful in pacing. It helped me learn that standing up to do anything for more than 5-7 minutes would have me exceed this threshold and that I was often overdoing household tasks as a result.
Additionally, I have brought a copy of the 12-page test report to all of my existing and new doctors, and a quick look at the cover page tells them my list of significant findings. Their eyes no longer glaze over from me telling them verbally what is wrong with me; it’s right there in black and white ink. The report has helped me not to feel dismissed by providers.
Social Security Disability
Part of the insurer’s LTD policy is that recipients must be open to applying for social security disability benefits. The insurer retains an attorney to assist the recipient with the application. When I first learned this, I’ll admit my breath became shallow again, and I was thinking “here it is – the next way that they keep you from resting.”
When the attorney’s office called me and I explained my concern at having to essentially do all of this legwork all over again, they assured me that they do that work, accessing my records through the insurer. The insurer also pays the attorney’s fees with any back payment that social security would pay me should I be approved (since I would have to send the back pay to the insurer, they use these funds to pay the attorney).
Plus, if there is any difference between what the insurer currently pays me and what social security will pay, the insurer will continue to pay the difference. For example, let’s say the insurer currently pays me $2,000/month and social security eventually approves me for $1,500/month. The insurer will pay the $500 difference so I will ultimately receive the same amount of benefit but from two sources.
Since my LTD was only recently approved, I have just begun the process of applying for SSDI, and so far, the attorney has been correct and my level of involvement has been minimal, thankfully. We will see how this part of the journey goes. The insurer also pays the attorney to appeal the case should it not get approved, so we would be in for a long road ahead given that turnaround times for social security benefits have apparently increased since the pandemic began.
I am still experiencing the waxing and waning of symptoms that are characteristic of ME/CFS and long COVID. It helps that I have a therapist who lives with ME/CFS; she not only helps me process the grief and the acceptance of living with these illnesses, she helps coach me around my overachieving tendencies and pacing more effectively. One thing is clear – with the emotional toll of open disability applications no longer looming large, I have found a greater ability to deeply rest and to really focus on getting better at pacing.
- The Workwell Foundation’s COVID-19 Page – Many blogs and presentations on pacing, the 2-day CPET Test, and Disability
- Webinar on Getting Disability with Long COVID – includes Workwell and Kantor and Kantor group
- Longhaulers-Legal-Resource-Center – From Kantor and Kantor
- Health Rising’s Disability Resources – many more resources on getting disability for people with ME/CFS, fibromyalgia, and long COVID.