Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.

Both conditions can be severe enough to render people disabled due to symptoms such as extreme fatigue, cognitive deficits, orthostatic intolerance, and postexertional malaise (PEM). “For many with ME/CFS and long COVID, it’s very difficult to sustain long-term employment. Disability benefits become a lifeline for people facing that predicament,” disability attorney Edward P. Dabdoub, JD, founder and director of the Dabdoub Law Firm, said in a special presentation held during International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2025 virtual meeting.

While there are no standard biomarkers for either illness, combining specific objective clinical measures with written testimony can overcome the barriers put in place by private disability insurers — mostly employer-based — and, to a lesser degree, Social Security, Dabdoub said.

“When someone is struggling from a disability and they have to submit a claim to an insurance company, it’s automatically an uneven playing field, the ultimate David vs Goliath. The person who is struggling with a serious medical condition is not equipped to take on a well-oiled insurance company that’s willing to put a lot of time and resources into shooting down those claims, hoping these people just give up and go away,” Dabdoub explained.

The insurance companies have long tried to cast ME/CFS as purely subjective and lacking objective evidence, or as a mental illness for which the duration of benefits may be more limited. Now they seem to have ratcheted up this approach as the number of these claims have increased with the emergence of long COVID.

“As they get more claims for these conditions, it seems like the insurance companies are shooting them down even more. So we’ve had to refine internally how we respond to those denials when a client comes to us,” Dabdoub said.

His firm now handles long COVID and ME/CFS claims nearly identically. “The symptoms are remarkably similar. Many of our clients with long COVID have ME/CFS…The advice to the treating physicians would be the same: Document, document, document.”

Conference participant Nancy Klimas, MD, chair of the Department of Clinical Immunology at Nova Southeastern University, Fort Lauderdale, Florida, pointed out that the “attending physician” forms that ask about specific activities such as lifting or walking are often not designed to apply to waxing/waning illnesses like ME/CFS and long COVID.

“People can feel really bad, then get a little better, and then be really bad again, to the point where they use up every single sick day. They push through the day and then relapse. That’s really a hard thing to document on a standard form,” Klimas said.

How the Treating Physician Can Help

Nonetheless, both Dabdoub and Klimas said, there are ways that the treating physician can help prepare the patient with as much medical and nonmedical documentation as possible, ideally prior to the examination from the insurance company’s independent medical evaluator (IME).

Klimas, who has extensive experience in helping her patients with disability claims, writes cover letters and has created a special template in the electronic forms for more detailed explanations of the impact of the patient’s disability. In addition, she told Medscape Medical News, “I advise them to get legal advice as early as they can.”

Objective Evidence: Cardiopulmonary Testing, Neuropsychiatric Evaluation

Evidence indicates that people with ME/CFS and those with long COVID who meet ME/CFS diagnostic criteria are uniquely unable to reproduce cardiopulmonary exercise testing (CPET) measures during a second test, despite maximal effort during both tests, because of the effects of PEM on energy production. Increasingly, judges are accepting CPET findings as reliable objective indicators of functional capacity, ie peak oxygen consumption, Dabdoub said.

However, Klimas cautioned that some patients simply can’t perform a second-day test or experience extreme PEM afterward. Both she and Dabdoub advise combining CPET with neuropsychiatric testing, which can be conducted independently or pre- and post-CPET to demonstrate cognitive and physiologic decrement. This can be done virtually if the patient is unable to make an office visit, she noted.

“We can show what happens before and after the CPET, with measures such as the SF 36, the multidimensional fatigue inventory, or a pain inventory, something that you can measure,” Klimas advised.

When reporting those scores in a patient’s chart, Klimas will also mention the same score in the context of other more familiar diseases such as multiple sclerosis or heart failure, to illustrate the degree of deficit.

Other neuropsychological tests that can be administered as part of the disability evaluation include those assessing attention, problem-solving, memory, language, intelligence quotient, social-emotional functioning, and visual-spatial skills. If the patient can’t complete all these tests because of debilitating fatigue, that should be documented as well, Dabdoub advised, adding that ideally the neuropsychologist should have experience with these illnesses in order to interpret the test findings appropriately.

For patients experiencing orthostatic intolerance, a common feature of both ME/CFS and long COVID, another objective measure is either the tilt-table, or the office-based 10-minute “NASA lean” test.

Some of Klimas’ patients use an in-ear device called Lumia, available online, that tracks blood flow to the head. “The Lumia shows that when someone stands up, the blood flow to their head drops dramatically and doesn’t get better for a long time…It’s one of the most common things I see in my patients,” she said. Those data, too, can go in the patient’s record.

Nonmedical Evidence: Tell the Patient’s Story

In addition to objective test results, detailed notes from the physician about the patient’s restrictions and limitations resulting from the symptoms are extremely important, Dabdoub said.

“I’ve seen doctors’ notes that just broadly say ‘fatigue.’ That’s not going to get anyone benefits. What are the restrictions, what are the limitations resulting from the fatigue? Saying that the person has ‘profound fatigue, limiting activities beyond 2 hours a day’ is completely different from just saying someone has fatigue,” he pointed out.

And in fact, some insurers will specifically deny or limit claims with the wording “chronic fatigue,” so it’s best to avoid that term if possible, he noted.

Similarly, doctors will often simply write that the patient has “brain fog” without explaining how that affects the patient in terms of activities such as reading or remembering to do things. “Compared to thinking in the mornings, the brain fog affects her functionality in the afternoon. She’s unable to recall her grocery list. Give me a little bit to work with,” Dabdoub advised.

Symptom diaries, if patients are able to keep them, can also help, Klimas noted. “Ideally, these would include a description of a normal day, a worst day, and a best day, and how many of each they have. What percent of time are they lying in bed with the lights off?”

Testimonials from family members and caregivers can also be used as evidence, as can before-and-after photos or videos, Dabdoub said. “We had a client who got married in a wheelchair because of the state of her physical condition. We had photos of her 2 years earlier at her engagement party, where she was healthy, then on her wedding day, in her wedding dress, in a wheelchair. It was profound and very impactful.”

Other Tips: Watch Out for Deals, Don’t Take That Call

Klimas advises her patients to expect a denial the first time around, especially from Social Security. “The good news is, when you’re denied and then you appeal and you win, they have to pay you back to when they denied you…You just have to manage to survive on nothing until the appeal goes through.”

However, this is only true of Social Security and not most private employer-based plans for which Employee Retirement Income Security Act of 1974 (ERISA) rules apply, Dabdoub noted.

He advised that if a patient has a claim denied, “it’s incredibly important to prepare an appeal that goes through every aspect of the denial. It has to be a comprehensive letter that includes the medical and nonmedical evidence.”

One thing that patients should be warned about, Klimas said, is that once they win an appeal and the private insurers (not Social Security) know they will need to pay a claim, they will offer patients a “deal” like a one-time lump sum, or payment over a restricted period of time, such as 2 years. “And 2 years later you’re still sick. Now what do you do?”

Dabdoub also noted that if ERISA applies, the insurance company has a 45-day deadline to review the claim, but they often ignore it. “In other words, they almost always just violate the law. And that’s where it becomes important to hold their feet to the fire by putting additional pressure on them to make a timely decision, forcing their hand into finally capitulating and paying the claim.”

Another method the private insurance companies use is have their own doctor cold-call the treating physician to discuss the patient’s case. “I would recommend that the treating physician does not take that call because that’s not a conversation you’re prepared for. You probably don’t even have your patient’s chart in front of you. There are going to be a bunch of leading questions by the doctor from the insurance company. They’re coming in with an agenda, which is essentially to either soften your support for your patient or get you to completely flip.”

Rather, Dabdoub advised, ask that the request be made in writing or, insist that any phone call involve the patient’s attorney.

In sum, he said, “They’ve written these insurance policies in a way to limit payment or exclude payment…We have an uphill challenge with these conditions, but there is good news: If done right, these claims will be successful, and I’m happy to say, knock on wood, we’ve not had a single client who hasn’t gotten paid. So it’s a testament to doing things the right way, the thorough way, to get the job done.”

Dabdoub and Klimas had no disclosures.

Miriam E. Tucker is a freelance journalist based in the Washington, DC, area. She is a regular contributor to Medscape, with other work appearing in the Washington Post, NPR’s Shots blog, and Diatribe. She is on X @MiriamETucker and BlueSky @miriametucker.bsky.social.