From Long COVID to Disability: Understanding the Surge in POTS, MCAS, and Other Complex Illnesses

Long COVID, also known as post-acute sequelae of SARS-CoV-2 infection (PASC), refers to a range of symptoms that persist or develop long after the acute COVID-19 illness. Estimates suggest that between 5% and 30% of COVID-19 survivors develop long COVID​, representing tens of millions of people worldwide​.

Now, clear patterns are emerging suggesting that COVID-19 may trigger or worsen autonomic and multisystem disorders in a subset of patients.

In this guide, we explore the links between long COVID and conditions such as POTS, mast cell activation syndrome, Ehlers-Danlos syndrome, and multiple chemical sensitivity syndrome. Our goals is to provide practical advice to help patients navigate the complex path to disability insurance benefits.

Medical Studies & Statistical Data

Long COVID and Dysautonomia (POTS)

Viral infections have long been recognized as triggers for POTS, and SARS-CoV-2 is no exception. A growing body of research indicates that long COVID is often associated with dysautonomia, specifically postural orthostatic tachycardia syndrome (POTS).​

Several case reports and studies have documented previously healthy patients who developed POTS after COVID-19​:

• Experts from the American Autonomic Society have observed a significant increase in the incidence of POTS since the beginning of the pandemic​.
• While precise prevalence data are still emerging, early studies suggest that the correlation is strong. For example, a small 2023 study found that 79% of long COVID patients met internationally established criteria for POTS.​
• An additional 15% of long COVID patients in this study had orthostatic symptoms just below the POTS heart rate threshold, suggesting that nearly all participants had some form of autonomic dysfunction​.
• Another analysis reported that people who had COVID-19 were diagnosed with POTS at a rate five times higher than the incidence observed after COVID vaccination, underscoring COVID-19 infection as a potent trigger for dysautonomia.
• Larger studies estimate that approximately 30% of highly symptomatic long COVID patients have POTS or related autonomic disorders​. Notably, most long COVID POTS cases have occurred in patients with only mild acute COVID illness, with autonomic symptoms appearing a few weeks after infection – consistent with a post-viral autoimmune mechanism​.
• Experts hypothesize that an immune-mediated attack on the autonomic nervous system or a persistent inflammatory state may underlie these post-COVID autonomic complications​.

And clinicians are seeing the same trend in the field:

• Dr. Cyndya Shibao of Vanderbilt University stated, “You can see patients that were completely healthy before having a COVID-19 infection and now are completely disabled,” highlighting the severity of post-COVID autonomic dysfunction.
• Dr. Siddharth Singh, director of a post-COVID cardiology clinic in Los Angeles, similarly reports that many of his patients now meet POTS criteria. He emphasizes that even mild cases of COVID can lead to POTS.
• The American Autonomic Society issued a 2021 statement urging clinicians to be vigilant for orthostatic symptoms in anyone with a history of COVID-19.

This evidence strongly supports an association between long COVID and POTS and is consistent with reports that many long-haulers experience tachycardia, dizziness, palpitations, and exercise intolerance due to autonomic nervous system impairment​.

Long COVID and Mast Cell Activation Syndrome (MCAS)

Mast cell activation syndrome – a condition in which mast cells inappropriately release inflammatory mediators – has also been associated with long COVID.

• Some researchers suggest that hyperactive mast cells may drive the hyper-inflammation seen in acute and long COVID​.
• In one study, a survey of 136 long COVID patients showed that their post-COVID symptom profile (rash, hives, flushing, GI distress, tachycardia, brain fog, etc.) so closely mimicked MCAS that the authors concluded that aberrant mast cell activation may underlie some of the pathophysiology of long COVID​. This suggests that COVID-19 may trigger mast cells, leading to MCAS-like symptoms in susceptible individuals​.
• According to Dr. Lawrence Afrin, a leading mast cell disorder specialist, many long COVID patients have shown improvement with MCAS treatments, lending further support to the theory that mast cell dysregulation may play a significant role in long COVID.
• An Asia-Pacific immunology review also noted an “activated condition of mast cells in long COVID.” Such findings are consistent with anecdotal reports of long-haulers developing new allergic sensitivities – for example, sudden fragrance and chemical intolerances and recurrent hives – which are hallmark symptoms of MCAS​.

Overall, the prevalence of MCAS-like symptoms in long COVID is high. Ongoing research is exploring this relationship, and experts are calling for targeted trials of mast cell stabilizers in long COVID patients who fit the MCAS profile.

Long COVID and Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndromes are inherited connective tissue disorders characterized by joint hypermobility, skin elasticity, and tissue fragility. Although EDS is genetic, long COVID has been observed to reveal or worsen hypermobility spectrum disorders in some patients:

• An analysis by physicians at the Mayo Clinic found that 30–57% of patients with long COVID meet criteria for joint hypermobility (or hypermobile EDS) – a much higher rate than in the general population​. In essence, persistent inflammation can cause or exacerbate hypermobile EDS/HSD, causing joints to become more lax​.
• A study in BMJ Public Health (2023) found that people with pre-existing joint hypermobility were 30% more likely to experience prolonged symptoms (especially long-term fatigue) after COVID than those without hypermobility, suggesting that hypermobile individuals may be at higher risk for long COVID or have “unmasked” symptoms after infection​.
• Expert opinion supports this association: Dr. Jessica Eccles, a clinician and researcher, noted that POTS is closely associated with hypermobility, and COVID-19 may “unmask” underlying connective tissue abnormalities in at-risk people​.

While COVID-19 doesn’t cause genetic EDS, it appears to contribute to an increase in EDS diagnoses or symptom flares. Many long-haul patients have been subsequently diagnosed with hypermobile EDS/HSD that they didn’t know they had​.

Long COVID and Chemical Sensitivity Syndrome

Multiple chemical sensitivity (MCS), also known as idiopathic environmental intolerance, is a condition in which individuals become ill from low-level exposure to chemicals such as fragrances and solvents. New or worsened chemical sensitivities have been noted in some long COVID patients, suggesting another facet of post-viral immune dysfunction:

• Clinicians have reported cases of long-haulers developing severe fragrance “allergies” or hyperosmia (heightened sense of smell) resulting in headaches, rashes, and respiratory symptoms when exposed to perfumes or chemicals​. One hypothesis is that the immune effects of SARS-CoV-2’s may trigger mast cell activation or other immune pathways that overlap with MCS.
• Long COVID patient surveys have noted increased rates of food and chemical intolerance, and these often coexist with conditions such as MCAS and dysautonomia in long-haulers​. On the other hand, preliminary data suggests that individuals with pre-pandemic chemical intolerance may be disproportionately affected by long COVID.

Chemical sensitivity appears to be another condition on the rise in the long COVID population, and it is likely intertwined with the mast cell and autonomic disturbances described above. This connection underscores the complex multi-system impact of long COVID, blurring the lines between what were once considered distinct syndromes.

Anecdotal Evidence & Patient Experiences

Numerous patient stories have put a human face on these statistics, describing how long COVID has triggered conditions such as POTS, MCAS, and others in previously healthy individuals. Many long-haulers feel “forgotten, unheard, disbelieved, [and] isolated” when their post-COVID conditions are not initially recognized​.

For example, a patient named Mike shared, “I haven’t worked since October 2020. I’ve had three failed attempts to get back to work… but I just couldn’t do the job,” illustrating the debilitating nature of prolonged COVID symptoms.

Patients often describe a sudden change in health: one day they were active and employed, and weeks after COVID they found themselves dizzy upon standing, breaking out in hives, or unable to tolerate normal light and smells. One health care worker reported: “I am a nurse myself and specifically brought up that I believed I had POTS after COVID infection… I was treated like a hypochondriac and told I had anxiety, which was ludicrous as I had physical symptoms.”

This testimony, echoed by many in social media support groups, highlights both the development of POTS and the initial dismissal patients face when seeking care for these novel post-viral conditions.

Similarly, long COVID survivors who have developed MCAS symptoms have shared stories of frustration. Two young patients described how their long COVID-triggered MCAS was not believed at first – one patient said a doctor was “so unreceptive to the point where they were actually angry” about the MCAS diagnosis, and another had her unintentional weight loss mistakenly questioned as an eating disorder​.

Online forums and long COVID support groups are filled with similar accounts: people reporting that “COVID made me realize I have EDS/POTS/MCAS”, or that a minor infection “flipped a switch” in their bodies, leading to chronic illness. The overlap of conditions is a common theme – patients with newfound hypermobility often also have POTS and MCAS symptoms, which is consistent with medical observations of these comorbid syndromes​

This anecdotal evidence from patients points toward the reality that long COVID can trigger complex syndromes that were often previously under-recognized.

Rising Disability Claims Due to Long COVID

The rise in long COVID cases has resulted in a significant increase in disability claims and long-term absences. In fact, long COVID has been called “the largest influx of new members to the disability community in a generation.”​

A patient-led survey of 3,782 COVID long-haulers in 2021 found that more than two-thirds had to reduce their work hours or were unable to work at all seven months after infection​– indicating a significant need for disability support.

Navigating Disability Claims for Long COVID and Other Complex Illnesses

Long-Term Disability (LTD) Insurance Claims

Many private disability insurers offer long-term disability (LTD) benefits for those unable to work due to chronic conditions. However, LTD claims for long COVID and related disorders often face:

• Increased Scrutiny from Insurers: Insurance companies often deny claims based on a lack of objective evidence.
• IMEs and Peer Reviews: Insurers may require claimants to undergo Independent Medical Exams (IME) or have their records reviewed by an insurance-appointed physician who may dispute the diagnosis.
• Benefit Terminations After Two Years: Many policies limit benefits for conditions deemed “self-reported” or “subjective” to two years.

Continue to advocate for yourself, and know that with thorough documentation and support, many patients are able to secure the benefits they need to cope with these life-altering post-COVID conditions.

Social Security Disability Claims (SSDI)

Because the Social Security Administration (SSA) does not have a specific listing for long COVID, claimants must demonstrate that their symptoms meet or equal another listed impairment, such as cardiovascular, neurological, or immune system disorders.

For example, one strategy is to refer to Listing 14.06 (Autoimmune Disorders) for MCAS cases – if two or more body systems are moderately involved and there are frequent severe symptoms such as fatigue or malaise, you can argue that your condition parallels this listing.

Similarly, severe orthostatic intolerance can be compared to chronic heart failure listings (due to reduced capacity) or neurological disorders. It can be invaluable to have a disability attorney or knowledgeable advocate help frame these arguments in the language the evaluators expect.

Guidance for Disability Claims

Pursuing disability benefits can be daunting. Here are recommendations and best practices to improve the chances of a successful disability claim:

• Collect Comprehensive Medical Records: Gather all relevant medical records and test results that demonstrate your condition and its functional effects. This should include formal diagnoses (e.g., tilt table test report confirming POTS, and tryptase or mediator level tests and allergy workups for MCAS). Make sure the records cover the duration of your illness and note any progression or relapse.
• Obtain a Functional Capacity Evaluation (FCE): Ultimately, disability determinations hinge on functional capacity – what you can or cannot do consistently. A medical professional can document work-related impairments such as the inability to stand, sit, or concentrate for long periods of time.
• Highlight Failed Work Attempts: If you have tried to continue working but failed (as many patients have), describe those attempts and why they were not sustainable (e.g. symptom recurrence, safety issues, frequent absences). This real-world evidence can strengthen your case.
• Use Residual Functional Capacity (RFC) Forms: A residual functional capacity (RFC) evaluation from a physician can be useful – this form quantifies your limitations (how much you can lift, how long you can walk/stand, etc.) and often determines whether you can work at all. Physicians should provide RFC evaluations that explicitly state how symptoms affect the ability to perform work-related tasks.
• Include Comorbid Conditions: Long COVID often involves multiple overlapping conditions (e.g., dysautonomia, fibromyalgia, and cognitive impairment together). Don’t limit your disability claim to just one diagnosis – list all relevant diagnoses and symptoms. The combined effects may meet disability criteria even if each condition alone would not. If you have anxiety or depression as a result of your condition, include that as well (as mental health issues can add to the overall severity).
• Be Persistent and Consider Legal Help: It’s important to set expectations – initial claims are often denied (even in well-documented cases). Do not be discouraged by an initial denial; many long COVID and POTS patients win on reconsideration or appeal. The process can be lengthy (months or years)​, so consider consulting a disability attorney early on. Attorneys who specialize in disability claims usually work on a contingency fee and can greatly improve your chances by handling paperwork, meeting deadlines, and preparing legal arguments.

Continue to advocate for yourself, and know that with thorough documentation and support, many patients are able to secure the benefits they need to cope with these life-altering post-COVID conditions.

Schedule a Free Case Evaluation

For many, long COVID is more than a lingering illness — it’s a life-changing transition that brings with it new medical realities and financial uncertainties. If you’re struggling with conditions like POTS, MCAS, or EDS, know that you’re not alone and that you may be eligible for benefits.

With persistence, documentation, and the right advocacy, disability benefits are within reach. Contact us online or call (888) 321-8131 to schedule a free case evaluation with national disability attorney Nick Ortiz.