Getting disability approved for long COVID, ME/CFS, and similar diseases can take a journey – sometimes a long one.
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.
Familiar Story
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
For a couple of weeks, it looked like Amy had kicked the coronavirus.
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.
Relapse
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).
First Denial
Amy’s first disability application was denied. While this can be traumatic it’s generally expected and means little regarding the eventual outcome of the case.
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.
Appeal
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.
The long COVID clincher – a brand new symptom to them..long COVID nail!
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.
Crash
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
Amy, doing the 2-day CPET test. The test revealed that the formerly very athletic Amy now had an energy production “equivalent to the average, inactive 76-year-old female”.
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)
Mitoswab testing
- 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.
Approval
About two years after Amy filed her first application for short-term disability, it was approved. Her long-term disability approval followed shortly.
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.
LTD Approval
The key to Amy’s success in getting disability for long COVID appears to have been the 2-day exercise tests ability to show how functionally impacted she was.
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.
Aftermath
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.
Resources
- 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.
The problem is that ME/CFS is an “invisible disease”. Therefore, the NIH will not sufficiently fund researchers searching for a reliable “bio-marker”. I had an attorney friend tell me recently that most judges still consider “Fibromyalgia” patients as “nut cases”. It is almost to the point where a very prominent, healthy, well liked person in our society needs to contract a sudden and severe case of ME/CFS. Lady Gaga will not fill the bill.
Or, some bright researcher who has “skin in the game”, dedicates their entire existence to solving the riddle. I thank God for folks like Ron Davis, Lucinda Bateman, Amy Proal, etc., because they are not going to “give up” on their families.
There aren’t many people more famous than gaga. Check out brian Wallace from Iamals tho, polital savvyness. A big problem imo is cfs are difficult to understand, difficult to imagine. ALS is easy to understand, cfs what message are you trying to send? concept of illness ingrained in our psyche doesn’t include these types of sickness.
One dark thought I had though something would definitely get people talking about CFS, is if the next mass murder or shooting in the USA is done by someone with cfs. The kohberger murders and mass shooting always gets headlines
Finally think of all the problems there are in the world, do you care about them? It’s gonna be so difficult to get anybody else to care bc they are all busy with their own problems.
A guestion: you (Amy) say you and your doctor think you have had covid around march 2020? Have you done a PCR test or antobody test to confirm you have had covid at that time? If not, it is all speculation isn’ t? Don’t get me wrong i believe your sick.
You know – so many people around that time in particular had trouble verifying they had COVID. The tests weren’t very good (did we have a test then?) and I heard stories and stories of people who tested multiple times and finally got a positive test – which suggested that their other results were false negatives. If the virus wasn’t in your nose and detectable you were kind of out of luck. I don’t know how much faith to put into testing.
On the other hand, Amy had all the characteristic signs of long COVID (and ME/CFS), and when she did the 2-day CPET – that really clinched it. No other diseases, after all, that we know of produce results like that.
Cort, it is horrible that she had to go through that invasive testing, the court battles, and had to deal with the anxiety of waiting so long. The US economy is almost 25% dedicated to health care. Why are the German’s and the Finn’s ahead of us in detecting, and now possibly treating this disease? Something is desperately wrong with our system. At 25% of the economy, I don’t think throwing more money into a broken “Cookie Monster” system is the answer! Why does Dr. Scheibenbogen’s lab have a better ELISA assay than the NIH, or our enormous University system (with their gigantic endowment portfolios!)?
Thank you Amy for the long list of tests. It’s very helpful.
You’re welcome; thank you for reading my story.
Thanks Cort – that’s exactly right. There were details about my initial illness that I left out due to space and wanting to keep the focus on what it took to apply for disability. But I did get a PCR test two days after my first symptom that came back negative; two months later, once the antibody tests were more available, I tested with no antibodies. However, Cort is right in that if you look at the laundry list of conditions I am now dealing with, it follows closely with what’s happening to those long haulers who did get a positive test: EBV reactivation, T cell exhaustion, MCAS, small fiber neuropathy, vascular issues, and the latest – pre-diabetes and hyperlipidemia (high cholesterol not brought on by diet).
Furthermore, as cited in the latest paper by the Patient-Led Research Collaborative (long COVID), several studies have shown low or no SARS-CoV-2 antibody production and other insufficient immune responses in the acute stage of COVID-19 to be predictive of long COVID at 6–7 months, in both hospitalized patients and non-hospitalized patients. Here are the studies they cite that from:
García-Abellán, J. et al. Antibody response to SARS-CoV-2 is associated with long-term clinical outcome in patients with COVID-19: a longitudinal study. J. Clin. Immunol. 41, 1490–1501 (2021).
Augustin, M. et al. Post-COVID syndrome in non-hospitalised patients with COVID-19: a longitudinal prospective cohort study. Lancet Reg. Health Eur. 6, 100122 (2021).
While I can understand the desire to know exactly which pathogen triggered your illness, I wonder how much it matters in the long run as ME/CFS – which can be triggered by so many pathogens – looks so much like long COVID. At least so far it doesn’t appear to matter. You had an infection – you came down with long something – and here we are.
Of course if I had come down with an ME/CFS-like illness after getting an infection over the past couple of years, I would like to know if it was the coronavirus because of all the research that’s explicitly exploring the coronavirus-long COVID connection.
En marzo de 2020 no esistian todavía pruebas pcr para hacer, nadie sabía entonces qué era el virus ni cómo identificarlo. Las pruebas PCR llegaron mucho después y a todos los que tuvimos covid19 a primeros de marzo de 2020 no tenemos isopo positivo por falta del mismo, pero tenemos covid persistente que es muy parecido aunque con algunas diferencias, a SFC/EM. Yo ahora cargo con las dos enfermedades. No es justo decir que alguien que está contando lo que ha padecido se dude de que sea covid persistente.¿ Acaso cuando nos diagnosticaron SFC/FM nos gustaba que nos juzgasen por no tener ningún análisis que lo demostrara?
It’s not quite right what you’re saying. The PCR test that was performed at the time was highly sensitive. So sensitive that the CT value was reduced for the number of cycles. There were a lot of false positive results. That being said. I read that Amy had a PCR test and even an antibody test. Both negative at that time. Does it matter? Yes and no. If you have long covid you know the beginning point of your disease. If you have ME it doesn’t mean you have long covid. And vice versa. But i wish Amy all the best. She still have a good chance to recover.
My daughter had covid-like illness in UK in , Feb 2020, was in ICU on O2, still seeing specialist for asthma/ breathing symptoms. [ so did a nurse in our GP practice same time] PCR tests not available, not worth spit either , not a Dx tool!!! big con.
Dr. Carmen Scheibenbogen’s lab results are fascinating. Dr. Scheibenbogen’s lab published their lab results in Brain, Behavior, and Immunity in August 2020. I believe their data will tremendously help those fighting for disability benefits. But, even more importantly, this lab’s ELISA technique may have just opened the door for a cure/treatment of ME/CFS. Scheibenbogen argues that their results do not constitute a “bio-marker”. I disagree. Their methods and statistics are outstanding. They concluded that antibody levels do not correlate to disease severity. But, if you study the data, they do, indeed, correlate up to a certain point. The lab is being modest. They targeted their ELISA assay on many of the alpha, beta, and muscarinic, dopamine, serotonin receptors found in the nervous system. Their patents were from two different clinics. The IgG receptor autoantibody titers from the ME/CFS patients were significantly different from the controls. Clinic A had 79% of its patients with a high IgG antibody titer to at least one receptor, while clinic B had 91% of its patient’s win a high IgG receptor titer. No autoantibodies were found in the cerebrospinal fluid!!
Basically, elevated IgG antibodies against beta-2 receptors and muscarinic-4 receptors can be used as a “bio-marker”for an ME/CFS diagnosis. They argue that HHV-6 viral load may better correlate with the severity of the disease.
I might be wrong, but I have to disagree with your statement. Their study lays some good groundwork, but is very far from being able to be made into a biomarker. There’s multiple reasons for this. The main one being: Elevated GCPR-AAB’s are showing some correlation with symptom severity, but you can have very high GCPR-AAB’s and not be sick or lower one’s and be very sick. As Scheibenbogen and in particular Dr.Hohberger mention they currently believe GCPR-AAB’s only become problematic in certain environments (ischemia, inflammation,…). So whilst the GCPR-AAB’S are central in her new apheresis studies, their platform for developing a biomarker is following a multipronged approach that takes into account that ME/CFS is a multisystem disease. That means the measure the GCPR-AAB’s but also other things like cytokines, they measure Endothelial function using the EndoPat, check for viral reactivation and other things (the webpage was recently updated https://cfc.charite.de/klinische_studien/nksg/). In short: GCPR-AAB’s alone will likely not be a biomarker but a statistical tool amongst others that lead to a diagnosis.
Also: Scheibenbogen is absolutely great and all of this sounds very cool and optimistic and very close to developing a biomarker. However her department is very small, she lacks funding and might even run out of funding soon. We really need a big investment into her research(>15 mil. €) and I would love to see a multi-center collaboration with Akiko Iwasaki and Ron Davis.
I agree with all that you have stated, but her conviction that antibodies to receptors are the primary cause is awesome. The Germans came up with the newer Immunoadsorption technique, that removes antibodies from the serum. They are employing it to study all sorts of inflammatory conditions. Yea, discovering that the sodium and calcium levels in the cell are off is great, but that will not help many here. (Unless, an old FDA approved med can address this cytology.) Scheibenbogen has 5 German Universities in on this; I believe. I heard her interviewed, and she said something that shocked me. Fluge and Mella did not have enough funding to treat their patients with adequate Rituximab. Ok, wish I knew that before everyone tossed their latest data out the window!
Oscar, Folks have run around for 20-30 years with anti-thyroid antibodies, and have never developed Hoshamoto’s or Grave’s disease. So, it is very complex. But, I’m certain that we will soon have the technology to “knock out antibodies” to beta and muscarinic receptors. She’s barking up the right tree!
Let’s hope she’s barking up the right tree, in which case BC007 is a gamechanger, or that someone in the US is barking up the right tree. You’re absolutely right about Rituximab. It’s an absolute disaster! The study was underfunded and thus couldn’t be done correctly. Now with that failed result we’ll probably never see Rituximab get another chance. Just today I read the story of a woman who needed bone marrow transplant for Lymphoblastic leukaemia which really made me think. One problem in these prodecures is that post operation the patiens are severly immunocompromised. So not only can latent viruses in their body reactivate but in particular the donated bone marrow itself can contain EBV. This is the way the famous David Vetter died. After transplantion they do standard tests on you including EBV count. The doctors noticed that her EBV count was rising and prescribed her 4 doses of Rituximab, each a week apart. Since it kills the immune cells that EBV invades and grows in, they managed to get rid of her EBV and she’s living happily ever after. What shocked me was that this is apparently a standard practice in cancer therapy. My doctor doesn’t even know how he can test EBV count…
Here in Britain, we’re determined to hang on to our National Health Service precisely because of the treatment of people like Amy.
While we still have to battle sometimes to get all of the money potentially available to us, it’s not remotely as appallingly difficult to get it as it is in the USA.
Sadly I think it has become just as difficult, largely due to having a particular political ideology in place and private ‘health assessment’ companies working to government ideological goals. That is that if you are chronically sick or disabled, you just aren’t trying hard enough..
I spent 5 years of 10 in constant tribunals, winning every one but the impact on my health was immense.
It took me almost eight years to win SSD here in the U.S. back in 2009-2016. I have Ehlers Danlos Sydrome and a history of EBV with years of CFS.
I spoke with my old Attorney a couple of weeks ago. The cruel first Judge who heard my initial case refused to even mention my first geneticists’s report proving I have EDS in her denial. She just retired and is on her third round of cancer. She took the Government’s instruction not to award SSD to anyone under 50 literally with me and everyone else she encountered, according to my Attorney. I hit 50 in 2013.
But she also became the Chief Judge during that time period unfortunately and made sure the second Judge I went before would deny me. At that point I had two more geneticists’ reports from two additional, separate institutions verifying I have EDS. The second judge also never mentioned my genetic connective tissue disorder anywhere in his denial either.
The first judge said although I couldn’t hold my former professional job, I still could find work as a “movie theater usher,” while the second one said I could “sort mail.”
After Federal Appeals on each denial, I finally won. But in my case it’s only because I had special help.
Justice came for me only after I wrote the White House. Someone there looked into the egregious denial of justice waged against me and made it happen. So it was that, along with constant prayer to God, that helped me win SSD.
Word of advice: Find a Psychologist who’s a Doctor, not a mere Counselor or Social Worker, and carefully document your fatigue, pain, anxiety and depression issues. See them on a monthly basis. This can prove extremely helpful, along with your physical symptoms, in proving your case. Of course, don’t tell any Doctor early on about seeking SSD because you don’t want that in your notes.
Never give up.
Richard, I think Sara Myhill would disagree with your opinion.
Amy, I was very moved by your harrowing account to obtain both recognition and recompense. At a time when you were at your most vulnerable (and continue to be so), it continues to make me feel deeply saddened (and angry!) that those with Long Covid/ME CFS, who are so legitimately and desperately in need of support during this terrifying disease, continue to be disparaged, disbelieved and discarded.
I say a huge bravo to you.
It’s not lost on me how deeply difficult (physically, mentally and emotionally), this has been for you. I’m gladdened to hear you have a supportive therapist to help you process the ongoing grief, offering the safe space and recognition that you (and your flayed nervous system) so rightly deserves, and needs.
Know that you have the support, love and care of many ‘invisible’ hands in this community.
Go gently now.
Kerry, I am so touched by your comments – thank you for your warmth and compassion. I have learned a tremendous amount in these three years by those who have come before all of us COVID long haulers.
What do we do for those who won’t qualify as disabled if they haven’t worked 5 of the last 10 years? I’m thinking young graduates, stay at home parents, mental health/spotty employment, self employed. I don’t think that the flaming hoops that Amy had to jump through are reasonable at all, and she was working, had savings and had a supportive spouse.
Imagine people who don’t have the resources? Can they even consider approaching the gauntlet, but instead just die from exhaustion, hopelessness or loss of everything. So frustrating.
Big problem – I had a similar issue. My recollection is that you have a certain amount of time to prove your disability after you get sick. If I remember correctly, I had put so little money into Social Security that some of my documentation didn’t count. If you go over that time you literally can’t get disability – no matter how sick you are. That’s my understanding from years ago. It’s a weird system.
Thanks for this. I was a stay home mom prior to illness. (Before that I worked very hard – I even held three jobs simultaneously during nursing school). I am now completely dependent on my husband and will likely never be able to work again. I am 46. With three kids approaching college age, we are stretched financially thin. I live with daily terror by how thin my husband is stretched. I hope I die young, because I don’t have any hope things will change in my lifetime. I appreciate that you acknowledged those of us in this situation.
Amy I am so sorry that you’ve been through so much with both your health and obtaining disability. It makes me so angry what you had to go through, I certainly hope you can start to regain some of your health now. The various tests you had was interesting, I didn’t know there was such extensive testing for abnormalities.
Thank you so much for your kind words, Betsy. I had so many moments along the way of feeling like it was unfair to be this sick and to have them say “prove it.” I am also quite fortunate to have a health insurance plan that doesn’t require me to get a referral to see specialists. So I just kept going and going, finding doctors who were willing to test me for this thing or that thing. I think what’s particularly frustrating is that all of that testing that showed so many abnormalities didn’t matter at all – until I went for the CPET. That feels unacceptable. EBV reactivation alone can render one unable to work. It’s maddening indeed.
Amy, do STD and LTD plans keep your job for you, if you become well enough to return? Anyone else have insight on that? Does it depend on the insurer?
Hi Erika – STD and LTD are usually separate from your employment status. Your employer pays the premiums on these policies, and eligibility is usually after being employed full-time for a year. The date of eligibility is the day you become ‘disabled’ or the date you go out on leave. If you were working the day before and your insurer paid the premium, then it shouldn’t matter whether your employer eventually has to cut you loose.
So, in my case, I went out on FMLA (Family and Medical Leave Act – a U.S. law), so technically my job was only protected for 12 weeks. My employer could have chosen to terminate me after that if I was not able to work still. However, my employer was able to give me more time than that. I was out for over six months before they had to terminate me, since I was unable to return. But this generally has nothing to do with whether you receive STD or LTD and for how long (unless the policy limits the amount of time; some LTD policies only go for two years. Mine goes until retirement age, ostensibly, though I am sure they will try to kick me off well before then since I am relatively young still).
I hope I answered your question?
Pataients need to be advised to take a 2 day CPET test from the get go and the tests need to be widely available. I realize it is thought this idea is problamatic BUT….people can be convinced by testing that they must change their lives in order to not get worse. Amy’s story is another in a long list of ME/CFS patients who did not understand that working and exercise was harmful. How is the damage done by going back to work, exercise….in Amy’s case even hiking ….a better plan than accepting the damage that might be done by a 2 day CPET test? The test gave her clear evidence of the physical limitations, gave her methods of how to identify limits, and medical evidence to use for disability application and evidence for a diagnosis. Dr. Klimas says her most frustrating problem with patients is their not understanding how to and when to pace and rest.
Staci Stevens – who developed the 2-day exercise test at Workwell – has cited numerous times of how floored people can be when they learn how little energy their body is able to put out. Check out this story of how a person with ME/CFS improved their quality of life and their physiogical ability to exercise by following their heart rate based activity program.
https://www.healthrising.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/
Hear hear!
Thank you for your story, Amy – it will be helpful to many, I’m sure.
And thank you for providing the platform for stories like this, Cort!
I can’t disagree with you, Janet. The CPET report was so incredibly eye-opening that I could have made major changes to my life so much sooner. I think the cruelty of this illness in some ways is that when you get even a little bit of energy or feel even just a little better, you tend to want to “get things done.” You can only really learn the hard way that this is a big mistake, especially if you’ve spent four, five, six decades of your life pushing through.
Glad Amy has had some success…so so sorry she is so ill.
What stood out to me in her write-up is the unobvious way she serves as a model for the rest of us.
She is not a model for the many of us who have a different illness presentation and limited access to informed doctors and financial resources.
BUT…the way she mentions how she uses (and relies on) this website (Cort’s) (and the very effective search tool) to help her figure out how to navigate her way forward I think is VERY useful.
So extraordinarily painful to read what happened. I was diagnosed 30 years ago (luckily I had two family members who were physicians who went to bat for me) and it seems little has changed. Absolutely putting ill people through these physical, mental, and emotional hoops can cause suicide. Then they dare to call us “depressed.”
For all who are ill, know that you have a worldwide community of support. Amy, your skills even ill are most impressive. Unlike the rest of us simple folks. Please know that your letter will help many.
Thank you for your kind words, Ann. I have a bit of a writing background as a former grant writer and published author of academic papers on one of my areas of expertise. I am so heartened to hear that you think my article will help many, but I’d also like you to know that the “simple folks” you mention have taught me a tremendous amount in these last few years about fortitude, perseverance, and courage, as well as just imparting real knowledge about this illness and how to navigate it that I could never have learned on my own. So, my gratitude to you, to Cort, and to all of the others who have come before me is tremendous.
Twenty years ago I worked the process of SS disability for my young adult daughter. We specifically did the exercise testing on bike to measure lung and heart function for use in proving disability. We paid cash for the testing and the company gave us a discount because of cash payment. There was no next-day test at that point in time, and she would not have been able to get through it. She barely got through the one-day test, with much moment-by-moment encouragement from the provider. In previous years, she had tried to endure a treadmill test, but couldn’t keep herself upright after the first increase in pace. She had never worked, but being under 22, she qualified for SSD under her father’s benefits. A savvy person at SS told us if my husband retired, his benefits would come into play for her. That’s what we did. But yes, she was denied the first time of applying. They will reject you also if they see the ill person has done all the paperwork, so it’s best to have someone else verify that they are doing all the necessary work instead of the ill person. And we did not apply under a specific diagnosis–rather under the symptoms and medical records and testing. After about 5 years of illness and varying ability to go to school or a social engagement, she had just had a 90-day continuing fever of unknown origin but also some severe depression that was verified by her long-time psychiatrist, so I am almost positive that those two factors convinced SS to approve on the second application.
I have had ME/CFS since 1985. Never had a situation where employer insurance would apply. I dealt with SSDI.
I had SSDI benefits but got a job I could handle for 2 years so I went off. It took 2 years to get back on. I was homeless with ME/CFS with no income and no money for that time. For anyone out there who needs to get this kind of support I would reiterate what Amy said about not giving up. I have found that the tactic of stalling and making more and more hoops to jump through is the “policy” of SSDI and probably any insurance provider. Most people (yes that’s sad but) most people give up and either end up dying or finding some last ditch way of surviving. Even when I did get SSDI, every two years I had to re-apply…the stressful nightmare all over again.
But finally a worker who was “human” interviewed me …It was just like Amy said. A 15 minute interview lasted well over an hour. I just told them the truth. The clincher was when he asked me to estimate what percentage of physical ability I was at compared to before ME/CFS. I thought for a moment and replied honestly “4 percent”. He asked me to repeat that so I said judging by the amount of time I could perform physical tasks, a good estimate was about four percent. SSDI never made me re-apply again after that. He must have written something pretty profound in that report.
One other think I would like to add about this essay, is BEWARE. As Amy described her relapse after having done so well on Dr Pattersons protocol…Folks this is the monster…IF YOU HAVE THIS DISEASE, DO NOT GET FOOLED INTO THINKING YOU CAN “PUSH” IT. Pacing is THE most important discipline to incorporate into your life.
Thank you.
Thank you Hans for driving the point home about pacing – if folks take nothing else away from my story, this is IT. If I had a time travel machine, I’d go back to those months when I was almost recovered and I’d do things much, much differently. (In truth, if I had such a machine, I’d go back to before the pandemic and warn folks, but I digress…). I think one of the cruelties of this illness is that when you feel any bit better, you want to get back to living life as you once knew it. Sometimes I guess you can only learn this lesson the hard way.
Thank you for sharing, Amy. I have had a very similar experience, and I believe having my Workwell 2day CPET is the only reason my LTD and STD were approved on the first try. I had been sick off and on for years prior, thought it was Adrenal Fatigue at one point, got better and worse, kept on pushing and just dealing with it through my very demanding job and playing in a band. Had what I would call a brief remission in winter 2019, remember telling my husband I felt more ‘normal’ than I had in years (though I do usually feel a bit better in winter anyway). Was able to do physical work all day and just felt the normal (wonderful) tired that one should feel after a hard day’s work. What a glorious two months!
Then in jan 2020 my coworker brought a respiratory virus back from a vegas trip and I was sick with horrible cough and fatigue for 8weeks (c19? Very likely but no testing available). So much for remission, everything was back and continually getting worse. I pushed through the rest of the year, making work accommodations where I could, and stopped all other activities except work followed by resting in a cold, dark, silent room (in agony of pain, extreme exhaustion and more). Every evening and all weekend I was in bed, barely able to move. Workdays were hell, though I LOVED my job.
I was doing my own reading/research for years, trying to figure out what was wrong with me. I had finally stumbled across Health Rising and learned SO MUCH! (THANK YOU CORT!!). I learned about Workwell and the CPET and it seemed pacing was the one strategy that was helping people recover a bit. I got my HR monitor and started observing, found out I also had POTS. But my pacing trials on my own weren’t helping, because I had no idea how bad my situation really was.
I finally paid out of pocket for the CPET and traveled from Colorado to California for it in march 2021 (had to stay in the airbnb for a week so i could rest before and after the test). The test honestly wasn’t as rough to get through as I feared, it was over pretty quickly.
But my results… I was going into Anaerobic metabolism at just 81bpm! And with POTS, my HR was often over that just lying in bed, anything upright and it was over 120. I only got the test to give me real #s to work with in pacing, I honestly did not expect or want to be applying for disability at all.
But Staci told me I better talk to a disability attorney pronto, I could not keep pushing as I had been or I was at great risk of serious and potentially permanent further decline; she couldn’t believe what I was still managing to do. I had seen Whitney Dafoe’s story, I knew how much worse it could get. I stopped working immediately and applied for STD and then LTD. Both were approved right away, and I know it was only due to the CPET results.
LTD did require me to apply for SS also, as Amy describes. I did that over a 1.5 years ago, was denied on the first try of course, even having the CPET and very upsetting results on the neuropsyche exam SS made me do. I now have an attorney handling the SS appeal, but my appeal has been sitting there for months and hasnt even been assigned to an SS rep yet. My LTD will be trying to kick me off at the 2 year mark in june if possible Im sure, by saying I can do some other more sedentary job. My attorney will handle them too if they try that. I dont know if i will have to go do the CPET again or what, we will see.
I did NOT use the attorney the LTD insurer offered. I feel they have a conflict if interest. My LTD rep made the case that its in their interest to get your SS approved, because then the insurer can offset their payments with the SS amount. But, I think its really in their best interest NOT to get your SS approved, because that denial would make it easier for the insurer to also deny you. I may be paranoid, but thats how I saw it. Besides, for SS claims, I believe the max any attorney can charge is 6-7k, and that will come out of the insurers ‘backpay’ if I win, just as their own lawyers’ pay would. (Also, my insurer wasn’t even offering an actual attorney, turns out it was more of an ‘advocate’ company who just handles paperwork). Food for thought…
I know many patients cant do the CPET for various reasons, and I pray every day that another alternative will come. But if you are in this predicament and you CAN do the test, I urge you to do so, for both accurate pacing info and for help with disability if you need it.
Oh – and sorry, I know this is too long already – I fought and appealed my health insurer at the time, Kaiser Permanente, to pay for the CPET. In the end they only paid about 10%, but thats ok, it was mostly just the acknowledgement of validity of the test by covering it that I wanted from them.
This whole process, as Amy relays, is seriously stressful and a bunch of BS, frankly. Even with getting my LTD approved quickly, its been very hard dealing with all the stacks of paperwork, deadlines, repeated requests, uncertainty etc. Its just sick that people who are so sick have to go through this – largely to try to get us to give up, as stated. Don’t give up!! Ive called my congresscritters, but they didnt increase funding so its not going to get any better at SSA any time soon.
Best of luck to you all, I am so grateful we have each other through all this, though I wish we didnt have to!
Thanks, Traci for relaying your story and particularly how important the 2-day CPET was. For those looking to do them, I believe these tests may now available in three places – in central California at Workwell’s office, with Dr. Keller in New York and I believe that Theresa Dowell may have recently started doing them in Flagstaff, Arizona.
Dr. Lapp did my CPET testing in Charlotte, NC some years ago for my disability “review”. He is semi retired so I don’t know if they are still doing it.
Traci, I am so intrigued by your story as well – thank you for sharing it. I will agree with you that the CPET was not nearly as bad as I thought it would be. In fact, an odd thing happened for several hours after I took the test on day one – I felt GOOD. Like, almost normal. Instead of going straight to the hotel bed as I assumed I’d need to do, my husband and I did a little sight-seeing as recommended by Dr. Keller. I felt so good that I even had impostor syndrome for the rest of that day (“I must not REALLY be sick after all! Maybe I just wasted our time and money coming for this test!”). But then I saw Dr. Keller again the next morning for day two, and she told me “yeah, you felt better – because the exercise gave you a big ol’ hit of oxygen! It didn’t last though, did it?” Sadly, no, it didn’t last. I carried out day two of the test and all my mechanisms tanked, as we suspected they would.
Very interesting point about not taking the insurance company’s attorney. I never thought of that, and now you have me thinking. I can only control so many aspects of this process though, so I am just going to let the process play out.
Lastly: “congresscritters” :-). Thanks for that laugh!
Amy, hang in there. We’re going to destroy this monster, and you’ll recover your health. Somehow, we need more feet on the throats of those that control the funding. The fact that so many women suffer from this, just screams out “auto-immune disease”.(Outside the Ellers – Danlos patients!) MS and Psoriasis patients have these new wonderful medications, because they are visible and extremely vocal. Wander over to the Phoenix Rising site. That crowds is ready to riot. Cort, and this site are way too calm. I guess they do not want to upset the NIH. Well, the Europeans have done more than the NIH ever will. As for me, I’ve got my pitch fork out!
Amy, after reading your account, I am appalled but not surprised. My neighbor is a disability attorney and she has stories to tell! Many of her clients are enrolled in Kaiser Permanente, one of the biggest healthcare organizations in California, and they are particularly unhelpful in documenting (invisible) illnesses for disability.
Unless one has the money and additional help, I’m surprised anyone can win approval! That’s the reason I retired myself decades ago and have been scrimping by ever since. Three health care systems on–Stanford, Sutter and U.C.S.F.–and there are next to no doctors who specialize in ME/CFS, long Covid or even EDS. It’s so disheartening.
Amy, you are a true warrior–and role model! Thank you so much for using your precious energy to document the path for others. Sending you kind thoughts of better days and success! And Cort, you too, for all that your do for us struggling with this debilitating illness. I can never say it enough.
Thank you Nancy for your kind words of support.
Thank you for this great write up. The cruelty of this illness is it takes energy and money to fight for the supports we need, both of which are often lacking in many of our cases. I’m impressed by the determination you had to go thru this process!
EBV strikes again. Long Covid = EBV
Thank you for writing this, it had to cost you. Having gotten proof that “my body was not pushing enough oxygen to my muscles and organs (including my brain!) when I needed it most”, I’m curious if there were any other remedies discussed to rectify the problem. Yes, quite familiar with pacing.
Just thought you might have more knowledge given the impressive testing you had done. And I’m a little frosted none of the 19 doctors I’ve consulted suggested such testing.
If our healthcare and society as a whole were not so profit-focused maybe it wouldn’t be so hard to be able to get benefits that we all pay into. I doubt people in Europe are having these problems. There is SO much research on long COVID but I also am sure that insurance companies are deliberately using whatever loopholes they can to try to deny people any benefits. How can you prove clinical manifestations when there is no agreed upon criteria (at that time, and even now not sure if all doctors agree on what constitutes long COVID)? Getting the CPET was smart because it is one of the only objective ways to show impairment even if it isn’t able to conclusively show the reason. As someone who still works full time with fibromyalgia it scares me because there may very well come a day when I need to apply for disability and basically doing that itself is a full time job! Ugh.
Yes we have the same problems in Europe.
In Belgium most of us, when Ill, rely on national insurance.
National insurance agencies always were (and now even more post Corona + energy crisis + national debt going up + less ppl employed) instructed by govt to cut as much illness benefits as possible.
Which groups are the easiest to ‘get rid off’? Right … ‘cfs’ (ME is not recognised in most EU countries), fibro, long covids.
Those who have a hard time proving their illness.
I know soooo many people who lost illness benefits & were put on ‘unemployment’.
This then means they HAVE TO go looking for a job. If they don’t/can’t, they lose employment benefits (which are very low) too.
Finally, you’ll end up at the bottom, “living” on a ‘survival income’. Which is not at all ‘liveable’.
The entire country & government is set on ‘cutting benefits’.
They call us ‘the inactive’ (term coined by government). The inactive who don’t ‘want to work’.
The healthy unemployed and the ill. It’s all the same to them.
And it’s not bc we have some good researchers or ME specialists governments & ‘regular’ specialists acknowledge them or their findings.
On the contrary.
Every specialist who takes/took ME serious & performs/performed ‘’not mainstream’ tests that gives/gave us clues & evidence?
Almost all of them got into trouble with the ‘board of medical practitioners’.
Some got their license revoked.
This happened in UK to dr Sarah Myhill. But it also happened/happens to the few doctors we have over here.
You can’t explain the utter medical neglect & prejudice we have to face in almost every doctor’s office.
Many pwme stopped going to doctors altogether. Even for non-ME related issues. With dire consequences.
And when in hospital for something non-related? You shut up. You say nothing. Not even when you need surgery. Knowing you will react badly to anaesthetics & certain meds, you still shut up.
Waking up after surgery shivering like hell (low body temp which goes even lower during surgery) and a HR dangerously low? All hens on deck?
You shut up.
They know NOTHING about ME. really nothing.
they don’t believe in it & they don’t read a single piece of research.
Not even when you present it to them.
We are “time-consuming patients” to doctors & specialists.
And looking into our files would mean they have some ‘studying’ to do.
We’re also heavily under the influence of UK psych-cabal. What’s said in UK by ‘eminent psych-babble SW’ has had and still has an enormous influence on health policies over here.
We know from nurses & other staff in hospitals, doctors laugh about people w/ ME or cfs or fibro.
Long covid isn’t taken seriously either.
We’re nut cases to most of them.
So no. It’s not better over here.
Not at all.
I found the easiest way to get disability allowance is not to mention fatigue as they simply don’t care about that. But to instead get a specialist to write a letter about your cognitive impairment preventing you from working.
Cognitive impairment is more recognised as a disability than most our other symptoms.
It’s also important that if you find your doctor isn’t helping, then warn them if they don’t help, then you’ll lay a complaint to the Health Authority (each civilised country has one) these health authorities investigate doctors and nurses behaviour. Also dob in the insurance company to the insurance ombudsman
So we should as a group start using them to hammer any medical professional or insurance company that fails to help. As they’ll soon realise they can’t muck us around anymore
It breaks my heart to read your story. Thank you for the effort it took for you to write that up. My multi-year nightmare of obtaining LTD and SSDI was similarly difficult.
Having to go through that kind of stress while horribly ill was traumatizing and demoralizing. I was shocked at how you are treated like you are guilty and must prove your innocence.
My Workwell 2-day CPET test results were instrumental for me as well. Workwell told me that my results were among the worst they’d ever seen.
That was devastating to hear, but also confirming. My suffering was real. My mostly invisible ailments were actually devastating to my system. And now there was proof.
The system set up to obtain disability should not be stressful and torturous to desperately ill people!
Thank you for your kind words, Linda. I am so sorry you experienced a similarly grueling process. And I agree that the validation from the CPET was almost priceless.
Hi All
I am high moderate/severe ME/CFS and have had all benefits and ill health pension for 11 years.
Mine is a specific question about the CPET. It is used regularly here in the UK, but not the 2 day one.
I have been referred for a CPET as 6 years ago chronic breathlessness became my worst symptom…hours at a time daily. Tests have shown lung inflammation but no lung damage/asthma etc.
I wrangled for a 2 day test and was on the point of convincing the consultant…am I right 2 day test is needed to highlight PEM and work out precise anaerobic threshold.
But now the Physiologist is querying whether even one test is worth it. I have to be able to push myself initially to make the results useful.
I can understand her point and don’t know which way to argue. I know I haven’t done any cardio exercise…..and even then only brisk walking, for 6 or 7 years….and even then twice a week before going back to bed. I hadn’t learnt to accept rest and pace in those days!!
Any advice please
Workwell says only the 2day test can tell the difference between someone who is simply deconditioned due to inadequate aerobic activity and actual disease impairment; someone who is simply deconditioned (or even has heart disease, cancer etc) will still perform the same or improve on the second day test. I believe only ME/CFS and LC show the reduced day 2 performance (PEM) caused by the day 1 overexertion. Its that day 2 reduction in objective metabolic capacity that is the real indicator of ME/LC impairment, so I dont know if a 1day test would prove much of anything. It might even make them try to blame ‘deconditioning’ for poor day1 results. So Im afraid a single CPET may not be worth the risk of a setback, but the 2day might… you and your doc will have to assess that risk vs what you might gain from the 2day test. Since you already have your pension, perhaps it would just be helpful to get real #s for pacing? Or just to see for yourself the state of your metabolic system?
Workwell Foundation has some great info and learning videos for professionals, perhaps your physiologist will contact them or look into their info? They are very helpful. They developed this test protocol, so i think if you get it done elsewhere, they should at least find out the specifics of the protocol, to make sure they do it right so its worth your while and the risk of setback you are taking.
I forgot to mention in my rambling story above, I also aided my recovery from the 2 day test by having my dr arrange for me to go get a 3hr saline iv drip right after the 2nd test. I think it helped.
I know its a tough decision, one that we each have to assess the risk/reward of for ourselves. I was moderate/severe but I found it absolutely was worth the money and the week’s recovery. Best of luck, I hope this info was helpful.
Very helpful yes and kind of you to take the trouble. Thank you.
Excellent article. I went through this nightmare during the 1980’s. She is correct that a ridiculous amount of persistence is required to win these cases. I also learned new things about testing that is now available. Thank you for writing this for us and best of luck.
Thanks for your kind words, Susan.
Thank you Amy for writing this that will help others I am sure!
I would be interested to know if any of Amy’s tests revealed what CAUSES her lung shortness of breath. (And if that has possibly improved with any treatment.)
But it does not say in your article I think. If I am wrong someone else could answer so not to bother Amy herself further.
But lung CT did NOT explain it.
But lung CT, I am told, (If right), SHOULD show if there is any start of fibrotisation.
Maybe the Xenon gas MRI used in the study of Post or Long covid patients that could show the disappearance of small blood vessels in lung alveols would show this in her and other ME/CFS patients too with shortness of breath.
OR there are different reasons for shortness of breath, and also such not affecting the lung but the breathing muscels that also do not get the oxygen because of faulty bloodvessel epithel cells having trouble with calcium and natrium…so those groundbreaking papers are also important for us! Thank you Cort!
I wonder – Was there any mention of in that article about Xenongas MRI, if these bloodvessel findings could be reversible with any treatment or with time.
Or if they HAVE to progress to lungfibrosis.
Too early to know yet maybe.
Sweden Lund University hospital Lung clinic published an article where is mentioned a protein measured in blood that could tell if Long or PostCovid with lung breathing problems had risk of fibrotisation and so could be treated earlier. Treated HOW was not said… (If I have understood this right).
They have not mentioned Xenon gas MRI that maybe also could save patients earlier from not reversible, irreparable harm. But with WHAT TREATMENT…
And nobody I guess has yet showed any of this with ME/CFS patients. Or what causes shortness of breath in ME/CFS.
The late Dr. Paul Cheney was an expert at helping his ME/CFS patients get disability payments. He knew the right tests and the correct way to write up the disability letter. His patients were not put through an onerous and I believe dangerous test like Amy went through. Dr. Cheney was beloved by his patients who have set up a Facebook page…”Remembering Dr. Cheney”. You can ask the members about treatments, testing and how they got disability support.
He was! He had a great neuroscientist to send people to who knew just what to look for. I still remember his hame – Taras Olvishenko or something like that.
Cheney did use exercise testing, though. I did a CPET test in his office. Workwell surveys the participants and have found that people who experience long-term problems from the test are very, very rare – and they won’t do the test if they don’t feel the participant is up to it.
Thank you Amy, for taking the trouble & using your limited energy, to put this blog together so clearly 🙂 It’s packed with so much useful information. I really hope you can rest more now; you’ve had such a difficult time.
TY for sharing Amy. Dejavu. The abuse is inexcusable. Here is a head’s up on what may lie ahead.
After a year or two on LTD (or at their whim), the LTD Provider/Insurer may abruptly end your benefit payment and ask you to “prove” that you “still” cannot work (again), as “your condition may have (and is presumed to have) improved.” Furthermore, your short term benefits (and initial LTD benefits) were granted based on your inability to do “your work”, but now you will have to prove that you are unable to do ANY possible work (including work from home – even from your bed – for only an hour at a time).
They may insist that you see their “approved” (cherry-picked) specialists – who routinely don’t approve – except in rare and extreme circumstances where a patient can’t sit up or walk. Their specialists may (routinely) give contrary opinions to your own specialists (and in spite of test results) – even if it is completely irrational to do so – making your ability to work “contestable in the opinions of medical professionals”.
After all new tests and new consult reports are submitted (again) – even if it is clear that you are still unable to work – they still brazenly deny your benefits as a matter of standard practice. This forces you to hire a law firm (likely “specialized in disability claims”) to sue. However, they WILL NOT sue to have your benefits re-instated (as this could be prohibitively expensive out of pocket for you, with no guarantee of winning). Instead, they will suggest that you sue for a lump sum settlement (from which they will keep a large percentage for legal fees. Note that this is why they will not sue for short term disability, as it is not lucrative for them).
“Your” lawyers work against (or “with”) the lawyers for the LTD providers all the time, and have learned to “get along” (act and cooperate in each other’s interests). Their final settlement will typically provide: 1) The LTD provider with a much smaller total payout than if you stayed on LTD long term, 2) Your lawyer will take about 30% of your lump sum settlement (for a few hours of routine work in their role in “the dance”), and 3) You/the patient will (typically) receive a year or two of benefits (or perhaps $100,000 minus 30,000 for your lawyer = $70,000). Take it or leave it.
The whole process is rather routine and predestined for both law teams – although the lump sum payout may vary somewhat, depending on how “visibly disabled”, educated, tenacious, and financially able to fight and hold out that the patient is. If the first (low-ball) lump sum offer is rejected by the patient (as is typical), it goes back to negotiations for a few more months (over which the patient is under increasing financial pressure with zero disability income), after which a somewhat greater sum is offered – perhaps $30,000 more – which was envisioned as the likely final settlement by both lawyers in the first place.
Your lawyer will advise that holding out further will likely not gain a higher settlement, and may take months or years. If you elect to take it to court, you are advised that it may take years, will cost a fortune in legal fees, and you could lose and get nothing (or less than the exorbitant legal costs). So you (or generically “the patient”) accepts the settlement, as your (feasible) options are just an illusion (throughout the entire process – unless you have a lot of money and are willing to risk it in the hands of a lawyer and rigged system that have crushed your trust).
When the settlement offer is (almost inevitably) accepted, the LTD Provider/Insurer, and all lawyers benefit lucratively – at the expense of the patient who really needs long term support but is left with nothing and no recourse after their (relatively small) lump sum is used up. After this, the patient is left destitute. All of the lawyers concerned know this, but they could not care less.
You can call this an (obviously) rigged system, a scam and an abomination, but note that there is little or nothing that you can do to stop it from playing out – and your LTD provider and all of the (cooperating) lawyers involved know it – from the start.
Here’s hoping that I am wrong in your instance, but I hope that this “head’s up” may provide a helpful roadmap of what lies ahead (and why) if I am not wrong, and the carefully crafted “standard procedure” plays out by design. Good luck.
Dave, although your comment scared me a bit, I’m better off knowing what’s possibly coming my way than not, so thank you. I recently read this piece on the Pandemic Patients site, and fortunately it seems some LC patients are winning their lawsuits and getting reinstated for benefits. Take a look: https://pandemicpatients.org/2022/07/14/long-covid-patients-bring-erisa-lawsuits-to-secure-disability-benefits/
Hi Amy,
Your journey sounds familiar (sadly).
In my case I don’t know the initial culprit (pathogen) that changed my life forever (2001 feels like forever). I have ME.
What sounds so familiar is the toll of the insurance battle.
Physically, mentally, emotionally … not a chance in hell to get the very much needed rest, piece & quiet that Ill people need (more than anything).
Instead you must fight battles proving you are really ill.
There’s no option. You MUST go through all this & nobody will/can do it for you.
Search for knowledgeable doctors, appointments, have tests done, keep your papers in order, and finally: write up your own medical file with explanation of tests & published research papers attached.
Hoping they will then be able to interpret the medical fndings you present to them.
The fact that “you have to have money to get the money” needed to continue living (existing rather) with a life-destroying illness is also spot-on!
Like you, I spent all my savings the first years trying to find help, treatment and (I felt this from the start): ‘gather evidence’.
We only have National insurance (except for the happy few who have ‘salary-insurance’ at work).
I knew the day wld come National insurance would try to get me off benefits.
Which are the illnesses on which govt can save the most? The illnesses that have no ‘1 biomarker’ and no ‘social weight’.
MS, Parkinson’s etc have social weight. People/doctors still don’t really know what these illnesses are, but the reaction is compassion & no doubtful questions asked.
Rightly so.
But the scenario is totally different for ME, fibromyalgia, and now long covid.
These are the ‘groups of patients’ you can easily dismiss because they’re hard to prove (objectively).
Insurance (private or national) will do their utter best to downplay or deny any claims.
Which in the case of ME has led to suicides. What is left if you’re suffering incredibly, are unable to work, socialise, lose friends & often your partner, and on top of that you end up with no income at all?
I did what you did.
In a different order (following new research & then finding out where I cld get tested).
I knew I had to prove I wasn’t able physically nor cognitively (had a “high level performance function” like you but in IT/Marketing).
What made me win my court case eventually?
– the numerous blood tests with very (!) high EBV, CMV & HSV titers.
EVB not only IgG but also EBNA (which is taken more seriously).
– the 2x CPET (yes, like you I took the risk). You can’t ‘fake’ these tests.
Other (back then it was mandatory in ‘a cfs clinic) CPET’s + the final double CPET all concluded the same thing.
I had the level of a 85 yr old (I was 32 when doing the first test).
Very very poor Vo2max.
Which remarkably remained exactly the same throughout the years.
Anaerobic threshold was already reached at very very low Watt & HR.
+ Every CPET concluded ‘heart conduction problems’ + left bundle tack block + low HRV.
Which pointed to severe nervous system dysfunction according to the cardiologist.
Also ECG T/U wave flattening. Don’t now what means.
Conclusion: I could ‘write a bit & do some craft work’ at this low vo2max / METs level.
second day AT was reached at an even lower Watt. Which proves PEM since ‘healthy couch potatoes’ & ppl w/ other diseases always have a ‘training effect’ & will do better on day 2.
Not having that training effect seems to be exceptional.
– the second thing to prove (work related) Is cognitive impairment.
In many patients classic brain MRI does not show a thing.
So I did
*SPECT (reduced blood flow)
* qEEG LORETA scan (after reading marcie & Marc Zinn’s research)
This turned out quite telling.
Severe brain connectivity loss.
* Neuro-cognitive tests at a clinic for people with brain injury.
Very demanding tests (which they ended up splitting in half bc they saw me turning very pale.
Doing my utter best (I used to like such tests) & not ready to give up, they ended it for me.
What I also did after about 10 yrs being Ill & fed up w/ psychological insinuations: I went to a Neuro-psychiatrist. Asked him to turn my mind inside out.
He had me do the full DSM test (at home bc it’s 500 questions w/ repeated questions asked in different ways.
No way you cld fake that test either.
Conclusion: no psychiatric illness whatsoever. No anxiety, depression, …
That last test I did purely for myself.
To not have to explain/defend myself anymore.
He ended up sending me to a haematologist bc my white blood count was always too high & after ‘nothing psychological’ it caught his eye.
the haematologist confirmed monocytosis but didn’t know why/how.
2x CPET,
repeated viral reactivations,
trying every ‘treatment’ presented to me,
not aggravating my symptoms (on the contrary … I forgot a lot) during consultations,
and cognitive/nervous system dysfunction.
Those were the things the independent expert based her final report for the judge on.
These things made me win my court battle against National insurance (government in fact).
‘Unable to work, even PT, in any function’.
Cytokine profiles, low NK function, elastase, RNnaseL, quinolinic and kynurinic acid, gut dysbiosis and dysfunction … (ME findings) weren’t mentioned.
Too new? Too (un)specific? Too unknown?
I believe that there does exist ‘a set of markers’ that can distinguish ME from other diseases.
Not 1 marker but “a combination of markers”.
The same will be true for long covid no doubt.
But u need money & spend your little bit of energy (although I can’t even call it energy) on chasing those marker-tests.
When all you desperately want/need is rest, silence, and being taken seriously from the start.
It made everything worse. The stress of it all.
If there ever was a chance for me to avoid the worst?
That chance was taken away by the uncountable papers to fill in & numerous mandatory consultations at the National insurance office & the tests needed to prove my being severely Ill.
I hope ‘newly ill “ people get to read your account of what happened to you.
I hope they prepare themselves from the start. If they can.
My GP often says: not everybody is able to research & understand & ask for these specific tests. She herself doesn’t understand anymore what I’m sometimes talking about (research) she says.
On top of that: not everyone is able to compile their own well structured & well documented medical file.
And last but not least: as you said …
you need starting money +
knowledgeable doctors/test facilities in your country +
you have ‘to get there’. Impossible without help when sooo ill.
For the 25% group (very very severe ME patients 24/7 isolated laying in dark rooms)? Not possible at all.
I truly hope you can get your needed rest now.
Finally the ‘permission to be ill ’ (it almost feels like that after so much fighting & not giving up/giving in.)
I also hope this will truly be the end of your legal/insurance battle.
Over here they can repeat the whole thing over and over. You won, but then they start again …
Never sure when or if a new letter will be dropped in your mailbox asking for a new consultation to ‘review the current situation’.
I started to hate & fear our mailbox a long time ago. You can imagine.
Gentle hug for you from far away!
Oh, end … be proud of yourself.
You battled like a tiger!
Wow Elisa, well said! I have been there too, unfortunately.
Best Wishes
Your story is very similar to mine – the intense job, the repeat and worsening crashes, the insurance denial, even the trip to Ithaca. My lawyer is handling everything now, and I’ve been approved, but I wouldn’t have gotten there on my own.
I really thought I’d be able to recover by taking short term disability, but the whole process made me much worse. I can only hope that over time, and with the expert advice of my medical team, I’ll be able to improve to some degree.
It’s important that you shared this. The insurance companies are violating ERISA regulations, and unfortunately they are getting away with it. There’s no downside for them, and there are so many long haulers being hurt because of it.
Thank you, Elizabeth. I am sorry you had to endure similar stress. Some of the other folks who commented here have let me know that getting approved doesn’t mean the end of the eggshells you walk on with these private insurers. It’s so demoralizing. I hope that you fare well with all of this.
Where could I get the viome testing?
Hi Joy – you can go to the Viome website for more information on ordering test kits. https://www.viome.com/
Pay special attention to the banner at the top of the site, where they alert you to discounts/sales. Good luck!
I’m convinced that ERISA LTD and STD denials have significantly increased, especially for “invisible illnesses”. I went on disability with ME/CFS and fibromyalgia in 2003. Thankfully I was approved for STD and then LTD without any issues.
My ERISA LTD insurance company stated that I was required to apply for SSD and go through multiple appeals if rejected, although I recently discovered that the policy does not require me to do so. There are benefits to both options of receiving a portion of the benefits from SSD or receiving the full benefit from the insurance company. Obviously, it’s to the insurance company’s benefit not to have to pay the full benefit themselves. However, IF I were actually capable of working at all, there are different limits for if and how much I could work and earn between SSD and the ERISA disability policy. If I could work and didn’t receive SSD, per my policy, I could earn more money. However, my ERISA policy doesn’t have a COL adjustment whereas SSD does.
I didn’t hire an attorney to file and fight for SSD. It took over three years and three appeals, but I was finally approved.
I was reviewed by both SSD and LTD every few years without incident until 15 years had passed. Then things started getting more aggressive. My LTD insurance company started requesting a review each year. I was denied once because I couldn’t respond quickly enough to their ridiculous timeframe. But they reinstated benefits again after having me surveilled for two days, doing a full investigation on me including my social media presence, registered property and any vehicles.
Last year my benefits were once again denied. I was sent to a so called Independent Medical Evaluation with a Pain Management physician, scheduled two days before. My regular PM Dr is booked three months out. Regardless, as I continue to assert to the insurance company, my disability is not due to pain, it’s due to associated symptoms of ME/CFS and co-morbid illnesses.
Once again I was surveilled for two days in a row, although the only time I was seen was getting in and out of the car to be driven to the IME appointment, despite the surveillance being on a Friday and Saturday. The insurance company paid $6k for the IME and $2k for the surveillance and investigation package.
The IME report didn’t directly state that I was too disabled to work, however, the Dr did state multiple things which concluded that I am disabled per the policy. She said that I couldn’t even sit for the duration of the time she interview and in the physical assessment she didn’t indicate that I could perform any activity even 6-8 hours at a time. My policy states that if I can only work part time then I am considered fully disabled.
When I pointed out to the insurance company that even their own IME’s information supported my being disabled per their policy, the representative stated that each of the activity/hours are supposed to be cumulative, so if I can sit for 4 hours, stand for 4 hours, walk for 4 hours, that’s 12 hours right there. By that logic, based on the number of tasks listed on the form and each of them with a potential of 8 hours, a fully capable person would be able to work an 88 hour day, not week.
Included in my appeal were multiple records from my physicians, including neurologist, infectious disease specialist, PCP, pain management, radiology and endocrinology, medical literature outlining ME/CFS diagnostic criteria, my Google location history for the past three years showing the limits of my mobility, screenshots of my internet usage from my provider plus charts indicating how much bandwidth is typically used for various activities, again to show how little activity I do, photos of my bed with a hospital tray table set up in my dining room, where I lived for a year, and of my makeshift bed on the couch where I lived the year before, because I couldn’t go up and down the stairs. I’m sure there’s more I forgot.
Anyways, everything is being rejected. The insurance company keeps making ridiculous claims and now they want to send me to another IME. The way they won’t even accept their own IME, I don’t even feel like they would accept a C-PET if I could even get one. I live by myself, am mostly confined to bed and there’s nowhere near that does a two day C-PET. I found somewhere that does a regular C-PET, but they are not a reputable practice.
I had a heck of a time getting any attorney to respond to me. The one that did have been moderately helpful, but they don’t seem to understand that I can’t just pull a supportive Dr out of thin air. It’s hard enough to find in the first place and it takes years to get them to understand ME/CFS enough to help advocate and support disability typically.
My main point in writing all of this is in hopes that more people will see and there might be some sort of larger fight against the insurance companies to turn the tide.
Thanks for sharing this, Alana. It’s so awful what they’ve put you through. I am bracing myself for something similar at some point in the future.
I recently read this piece from Pandemic Patients which gave me some hope as far as putting up a successful legal battle. Hope this helps: https://pandemicpatients.org/2022/07/14/long-covid-patients-bring-erisa-lawsuits-to-secure-disability-benefits/
Thank you Amy for the response, sympathy and link.
I am certain that I will have to take my case to court, assuming I will be able to find an attorney to represent me. That hasn’t been easy so far. The biggest hurdle is going to be the medical documentation. The insurance company is trying to create more and more convincing medical proof that I am not disabled. Meanwhile, my own medical documentation is pathetic compared to what was available when I first became ill and subsequently went on disability.
My journey began in 1999 but now there’s not much need for diagnostics, my original Drs are no longer around, my current Drs haven’t seen my whole journey and they are mainly around to refill prescriptions, follow up on acute care and I learned a long time ago not to bother mentioning the majority of my symptoms lest I be continually repeating the same useless tests and eventually be dismissed without making any headway, only sliding further backwards.
The drawback however is that even when I do reiterate specific key symptoms they don’t often show up in my chart. So many Drs offices don’t correctly copy the information from the forms patients fill out to digital files and symptoms patients indicate that they have on paper show up as “denies” digitally. Also, it seems that the longer I see a Dr the shorter their visit notes get until they write a single, useless, fragmented sentence, even when I give them important information that I need to show up in my chart. And some Drs have been so prejudiced that they have written things in my chart in ways that gets used against me. This is a big reason why I included additional medical articles in my appeal package, carefully chosen to be written by medical Drs. I knew that everything I submitted was basically evidence for a trial.
Everything is weighted in the favor of the insurance company though until a trial. Even if I go to court, with ERISA group insurance plans there’s no ability to sue for bad faith. And although in some places damages can be sought for emotional suffering, it’s incredibly difficult to prove and therefore few attorneys will even attempt it. Some states allow recovery of some expenses and sometimes some legal fees. So it’s still a huge drain for the insured, and with nobody holding the insurance company accountable, it’s worth the effort for them to deny and go to court, if it even goes that far.
Hi Amy,
Please keep us updated on appeals with my health insurance company to get them to cover the significant cost of the exams. I too traveled 9.5 hours to get the CPET and other costly exams for my appeal. It was money I didn’t have and needed it to live. I would love to connect to understand how you did this.
Hi Elyce – in the end my insurance company denied payment for the CPET, even after appeals (the final one being to a federal agency – can’t remember which one now). They said it was because I did not get approval from them prior to having the test done. And that’s true. Because I did not think it would be covered, I didn’t even think to call them before the test. It wasn’t until I was actually on site that the exercise physiologist informed me that some people submit to their insurance and get approved. So, it was my misstep in the end.
It might be worth nothing that I’ve also been denied SSDI twice and my administrative hearing is in May. It’s pretty wild that I’d be denied, given the findings from the CPET, but many others have also been denied SSDI with a CPET and have had to exhaust the appeals process before getting approved.
Thank you so much for sharing your story. It takes a lot of courage to open up about such a challenging experience. Your strength and resilience in the face of such adversity is truly inspiring. To go through the hardships of COVID-19 and then cope with the long-lasting effects of disability shows just how strong you are, both physically and mentally.
You are living proof that even in the toughest times, perseverance can carry us through. Your journey serves as an example to so many others who may be going through similar struggles. You’ve shown that it’s possible to keep going, even when the road feels uncertain. Thank you for reminding us all that strength isn’t just about getting through the storm, but about how we rise afterward. Wishing you continued healing and sending you so much positivity. You are amazing!
Thank you for reading and for these wonderful comments, Janice. I am conflicted about taking too much credit for my “perseverance,” especially because my cognition has not been as badly affected as many others’ and because I have a lot privileged others don’t have (an able-bodied, working partner with great health insurance that covers me too and allows me to see specialists without a referral). There are moments when I feel proud of not giving up, and I let myself feel it, but I never lose sight of all the people and circumstances that helped me get to this place. I was finally also successful, on my third try, at obtaining social security disability also. I was very lucky to have a caring administrative judge for that – total luck of the draw. Anyway, thanks again. It was lovely to see your comment pop up after all this time – it means my piece is still helping people, and that means a great deal to me.