How Do You Treat Long Covid? Patients Surveyed for Answers

By Esther Landhuis, Undark Magazine

In January 2020, Martha Eckey was working at a retail pharmacy in Champaign, Illinois, when she developed a sore throat, hacking cough, and stiff neck. A second bout of illness struck about a month later, leaving the pharmacist with a persistent fever and shortness of breath. Covid tests were unavailable at the time, but she tested positive for influenza.

The biggest challenge was “crushing, debilitating fatigue,” she told Undark. “No amount of sleep left me feeling even remotely refreshed,” she added by email. Three-and-a-half years later, Eckey has still not recovered.

Shortly after her initial illness, Eckey started reading about people with lingering post-Covid symptoms, and although she never knew for certain which virus caused her initial illness, those symptoms seemed strikingly similar to hers.

After connecting with patients navigating these conditions, Eckey wondered if she had developed myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a long-lasting illness that can crop up after a viral infection.

She went to see several physicians, but they “told me they were not taught about post-viral illnesses,” she recalled. “It literally wasn’t in their curriculum.” Eckey had not learned about post-viral syndromes in her four-year doctor of pharmacy training, either.

MARTHA ECKEY

Long Covid and ME/CFS are complex illnesses. Up to 2.5 million Americans live with ME/CFS, and more than 65 million people worldwide may have long Covid — though estimates vary and the dozens of symptoms across multiple body systems can make these conditions hard to define and diagnose. In some people, symptoms linger or intensify with time, but in others they occur weeks or months after recovery from the initial infection, which could be mild or undiagnosed.

In a recent analysis of 9,764 adults enrolled in the federally funded initiative RECOVER, long Covid patients fell into four subgroups based on symptoms, many overlapping with ME/CFS and other conditions. By studying biological samples from these participants, researchers hope to identify markers that can inform future trials of potential therapeutics.

Yet for now, despite an influx of research funding, there are no widely accepted treatments approved by the U.S. Food and Drug Administration to ease sufferers’ symptoms. In that void, desperate patients have turned to a range of proposed solutions — from microbiome treatments to vitamin supplements to experimental techniques like “blood washing” — to find relief. In this vast array of possible therapies, some are exorbitant and most are unproven.

Eckey quit her pharmacy job in August 2020 to search for useful patterns amid that chaos. Unlike most national initiatives and large academic research programs, Eckey is employing a bottom-up approach: She polls patients on which interventions they’ve tried and how they fared, in the hope that this crowdsourced knowledge might contain valuable insights for improving long Covid care.

While surveys like Eckey’s come with inherent limitations, some researchers think such grassroots efforts can help inform more rigorous studies.

“Large clinical trials cost millions of dollars, and it’s impossible to test hundreds of different things at once,” said Akiko Iwasaki, whose lab at the Yale School of Medicine studies the immunology of long Covid. “Knowing what has benefited the patients already provides us with insights that can be tested in future trials.”

Medications and Supplements

Late in the summer of 2022, Eckey, known to social media followers and Substack subscribers as LongCovidPharmD, created several surveys using Google Forms and shared them on Twitter (more recently rebranded as X).

One of the surveys listed about two dozen medications — including Paxlovid, statins, and beta blockers— and had respondents tick boxes for the ones they had tried. It asked them to indicate if taking the drug seemed to “moderately improve,” “vastly improve,” worsen, or have little to no effect on long Covid symptoms or quality of life. Other sections asked if they had conditions that commonly occur alongside ME/CFS or long Covid, such as dysautonomia, mast cell activation syndrome, or a history of blood clots.

Eckey also grew curious about supplements — a category that includes probiotics or enzymes, herbs, minerals, vitamins, and other over-the-counter products with suggested uses that are not regulated by the FDA. In social media posts, she noticed that people commenting on supplements would say, “‘Oh, that didn’t work at all for me,’ and then other people say, ‘oh, that cured me,’” she said.

So she created another survey, listing eight types of supplements and asking to what extent they seemed to help with fatigue, cognitive function, and other symptoms. Motivation for that survey also came from Eckey’s own frustration with being unable to get any prescribed treatments, she said: “I thought, ‘Well, I think I just have to figure out how to treat myself.’”

With more than 200 respondents, the surveys gave a sense for which types of supplements seemed most helpful. Additional surveys focused on the most promising supplements — which doses were used and for what frequency and duration, whether patients improved or felt worse, and which symptoms patients noticed seemed to be affected.

Eckey analyzed the results and started posting detailed summaries on X. Then, in late 2022, her work caught the attention of the Open Medicine Foundation, a California-based nonprofit that has raised $40 million to diagnose and treat complex, multi-system diseases including ME/CFS, long Covid, and others that have eluded doctors.

No Approved Treatments

ME/CFS and long Covid have no FDA-approved treatments, and neither has a definitive diagnostic. The situation echoes that of early days of AIDS, which, decades ago, was defined by symptoms rather than measurable changes inside the body, said Wenzhong Xiao, a computational biologist at Harvard Medical School who directs the foundation’s efforts on ME/CFS treatments.

Regulators typically validate medical treatments through a formal application that specifies the substance’s composition and how it’s made. The application also proposes further study in clinical trials, which generally won’t launch without supportive data from smaller pilot studies. When the Open Medicine Foundation came across Eckey’s work, the organization was already trying to decide which potential treatments to test in pilot studies for long Covid, and was making a registry from which to recruit patients. 

Building on her initial surveys with information gleaned from published trials, case studies, patient feedback, and her “own pharmacist intuition,” Eckey created a more comprehensive version, called “TREAT ME,” and tweeted it on Feb. 5, 2023. 

The survey — which, by Eckey’s account, took about 1,000 hours to produce — covered more than 150 medications and supplements. After collecting details about a person’s symptoms, lab tests, and medical history, the survey asked about treatments: whether they appeared to help, which symptoms improved, how long it took to see benefits, how long the benefits lasted, and whether they were outweighed by side effects. If a medication did not seem to help, the survey asked how long it was tried and at which doses.

“No one has done that deep a dive,” said Linda Tannenbaum, the CEO of the Open Medicine Foundation.

By the time the survey closed for analysis in late March, the responses had climbed to nearly 4,000.

Survey Bias

Despite the potential, surveys have unavoidable, inherent biases that can influence how data is collected and results are interpreted, said internist Lucinda Bateman, founder of the nonprofit Bateman Horne Center — a clinical care, research, and educational organization in Salt Lake City, Utah, that focuses on chronic, complex disorders including long Covid. First, there’s selection bias: Who decides to participate and why? There’s sampling bias: Who never hears about it? There’s also non-response bias: People for whom a treatment has little to no obvious effect may be less likely to participate. 

Surveys also hinge on participants’ own accounts, which aren’t typically confirmed with other sourcing. Eckey’s survey, for instance, relied on respondents to indicate whether they had an official or presumed diagnosis of long Covid or ME/CFS.

The approach also can’t typically account for the placebo effects that result from other factors besides a specific treatment or from other ongoing illnesses or treatments, which may skew the results. And beyond the difficulties with diagnosing long Covid, people may “think they got sick during the pandemic, and it’s entirely something else,” said Bateman. The uncertainty in the data is “just what happens when you do surveys,” she added.

Eckey agreed with these caveats, noting that she tried “to limit bias to the extent that I could.” For instance, to ease non-response bias, the survey instructions encouraged participants to rate treatments “even if they had no effect,” she said.

She also prompted participants to specify underlying conditions and treatments, and responses could be filtered accordingly. And Eckey included one supplement that she believed would have little to no impact on symptoms, figuring questions about it “could act as a sort of ‘placebo’ against which other treatments could be compared.” On a similar vein, she asked about several treatments that were hyped at various times and found their reported benefits to be “underwhelming” or not statistically different from related drugs.

The supplement industry is vast and largely unregulated, with many products lacking solid evidence for health benefits. Research to produce that evidence is a complex, costly process that requires FDA input, often participation from the company that produces the supplement, and approval by an independent ethics committee. What’s more, such trials must follow a company’s best guess on the right doses, optimizing the supplement’s benefit while minimizing side effects.

This approach comes with substantial risks for illnesses like long Covid, which cause a range of symptoms that differ from one person to the next, said David Putrino, director of rehabilitation innovation for the Mount Sinai Health System in New York. A single treatment won’t necessary work for all of them, Putrino, who studies and treats long Covid patients, added in an email, and “you feel like you only have ‘one shot.’”

Eckey’s survey, he said in a phone interview, “allows me to actually make data-driven decisions on what seems to be working.”

The approach is already prompting new studies. Some researchers think that certain long Covid symptoms stem from tiny blood clots; more than 60 percent of Eckey’s survey respondents said they felt better after taking supplements containing enzymes that break down fibrin, the main protein that forms the clots.

These results helped Putrino and colleagues choose one of the enzymes, called lumbrokinase, for a long Covid trial planned for early 2024.

“My desire to get better and help others in similar situations is what keeps me going.”

— Martha Eckey

The Open Medicine Foundation team is also using the survey results to inform drug trials. In a more typical trial, the group mines published scientific literature and uses machine learning to predict which medications might help. These analyses would have likely missed lumbrokinase, since it appears in relatively few academic research papers, Xiao said. Based on Eckey’s survey findings, he said, his team is “definitely thinking about doing follow-up studies.”

Beyond her dataset, Xiao added, Eckey is herself is an inspiration: “I can imagine how much effort she put, despite her own symptoms, to make this happen.”

Eckey’s lingering fatigue still keeps her mostly housebound — and, on some days, stuck in bed — but she told Undark via email that her cardiovascular symptoms have improved. On her better days, she said, she plans to volunteer at a free ME/CFS clinic that treats post-Covid patients: “My desire to get better and help others in similar situations is what keeps me going.”

Esther Landhuis (@elandhuis) is a California-based science journalist and a senior contributor to Undark. She covers biomedicine at all stages — lab discoveries, clinical trials, biotech, healthcare and its intersections with law and business. Her stories have also appeared in Scientific American, Nature, Medscape, JAMA, Science News, Quanta and other outlets.

This article was originally published by Undark, a non-profit, editorially independent online magazine covering the complicated and often fractious intersection of science and society. You can read the original article here.

Covid Long-Haulers Face New Battle for Disability Benefits

By David Tuller, Kaiser Health News

Rickie Andersen took a brief break from work last March after she fell ill. Her cough, fever and chills were typical covid-19 symptoms, but coronavirus tests were so scarce she could not obtain one to confirm the diagnosis.

After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties and other disabling complaints. For six months, she tried to keep awake during meetings and finish basic tasks that took much longer than before.

Finally, she decided to retain legal help so she could take advantage of the disability insurance coverage offered as an employee benefit. “I realized this is not going to be a short-term thing,” Andersen said.

Hundreds of thousands of people around the world are experiencing what is being called “long covid” — a pattern of prolonged symptoms following an acute bout of the disease. Many have managed to continue working through accommodations like telecommuting, cutting down on hours and delegating responsibilities.

Others have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits. But as they pursue the application process, they are discovering a particular set of challenges.

Given the lack of testing in the first months, many “long haulers,” like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster.

Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

“Most are people calling to say, ‘I thought I could do it. I can’t. My mind doesn’t function for more than really brief periods of time,’” Comerford said.

In the U.S., close to 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. What proportion might be affected by long-term illness isn’t known. Scientific understanding of the phenomenon is in its infancy.

In January, The Lancet reported that around three-quarters of more than 1,700 covid patients who had been hospitalized in Wuhan, China, reported at least one ongoing symptom six months later. More recently, investigators from the University of Washington reported in JAMA Network Open that around 30% of 177 patients who had tested positive for the coronavirus still reported symptoms when they were surveyed one to 10 months later.

Strict Criteria for Benefits

The Social Security Administration provides long-term disability to American workers who qualify under its strict criteria, but applicants often get turned down on the first try. A few states, including California and New York, provide short-term disability benefits, in some cases for up to a year.

Tens of millions of Americans also have private disability coverage, most often as part of their employment benefit packages.

The maximum currently available to an individual through the Social Security Disability Insurance program is just over $3,000 a month. A typical private long-term disability plan might cover 60% of a beneficiary’s base salary, with a much higher maximum amount.

Sandy Lewis, a pharmaceutical industry researcher, fell ill last March with what she assumed was covid. She recovered but relapsed in April and again in May.

Through her employer-based insurance coverage, she received short-term disability for November and December, but the insurer, Prudential Financial, rejected her request for an extension. Soon after, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a debilitating illness that can be triggered by viral infections.

Lewis, who lives outside Philadelphia, is planning to appeal Prudential’s rejection of the short-term extension and apply for long-term disability. But the matter is unlikely to be resolved before fall. The situation has left her feeling “devastated,” she said, and in serious financial distress.

“This has been such an arduous journey,” she said. “I have no income and I’m sick, and I’m continuing to need medical care. I am now in a position, at 49 years old, that I may have to sell my home during a pandemic and move in with family to stay afloat.”

In Lewis’ case, a Prudential reviewer noted that her symptoms were “subjective” and that there were “no physical exam findings to correlate with any ongoing functional limitations,” according to Cassie Springer Ayeni, an Oakland disability lawyer who is representing her as well as Andersen.

Prudential would not comment on a specific case. Evan Scarponi, chief claims officer, said in a statement that “our collective understanding of covid-19 and any associated long-term effects are still evolving” but that Prudential is “well-versed in evaluating both subjective and objective aspects of disability claims.”

Lawyers and advocates in the field expect the numbers of covid-related long-term disability applicants to rise this year. But it’s still too soon to detect any such increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically must be unable to work for half a year before becoming eligible for long-term disability benefits, and applying can itself be a lengthy process.

‘No Objective Evidence’

Brian Vastag, a former Washington Post science and health reporter with ME/CFS, stopped working in 2014 and then sued Prudential after it rejected his long-term disability claim. Insurance companies, he said, can easily find reasons to dismiss applications from claimants with chronic illnesses characterized by symptoms like fatigue and cognitive impairment.

“The insurance companies will often say, ‘There’s no objective evidence, so we have nothing to support your claim,’” said Vastag, who won his case against Prudential in 2018. “I’m worried about the long-covid patients who can’t work anymore.”

Claimants can appeal a rejection. If the insurer rejects the appeal, claimants have the right to sue, as Vastag did. However, most such cases fall under the Employee Retirement Income Security Act of 1974. Because this federal law requires a losing insurer to pay the unpaid claims but does not provide for punitive or compensatory damages, critics argue it incentivizes the denial of coverage.

In the event of litigation, the court’s role is to assess the already existing evidentiary record. That means it is essential to present a robust case in the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.

“It’s the only shot to build a record for the courts, to develop a full body of evidence,” she said.

However, a successful disability case ultimately depends on documenting inability to work, not on obtaining a specific diagnosis. To augment the medical evidence, Ayeni often sends clients for neuropsychological testing, investigations of lung function and other specialist assessments. She also gathers affidavits from family members, professional colleagues and friends to confirm patients’ accounts.

In Rickie Andersen’s case, the strategy worked. Recognizing how complicated the application process was likely to be, she sought legal help early on. The insurer contracted by her employer approved her for short-term benefits late last year and granted her application for long-term benefits in February.

“I knew all of it was completely exhausting, so it wasn’t something I thought I could do on my own,” Andersen said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Long-Haul Covid Shedding New Light on Chronic Fatigue Illness

By Kevin Cool, Kaiser Health News

Four weeks after San Diego pediatric nurse Jennifer Minhas fell ill with covid-19 last March, her cough and fever had resolved, but new symptoms had emerged: chest pain, an elevated heart rate and crushing fatigue.

Her primary care physician told her she was just anxious, and that none of her other covid patients had those issues. “That wasn’t what I needed to hear,” Minhas said.

At times, she’s been too exhausted to hold up her head. “I was kind of a zombie for months, shuffling around unable to do much of anything.”

The clinical term for the flattening fatigue Minhas describes is “post-exertional malaise.” It is a common symptom among patients who have not recovered from covid. It is also consistent with a standard feature of another chronic illness: myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.

ME/CFS patients also report cognitive impairment — “brain fog” — and orthostatic intolerance, in which standing upright produces a racing heart rate and lightheadedness. Minhas has experienced these symptoms, as have many other “long-haulers,” the tens of thousands of post-covid patients who haven’t recovered.

The percentage of covid patients who become long haulers is hard to pin down — in part because many early covid patients were not tested in time to detect the virus. But “long covid” is potentially an enormous problem. A recent study of 1,733 covid patients in Wuhan, China, found three-quarters of them still had symptoms six months after being released from the hospital.

As of January, doctors had documented more than 21 million cases of covid in the United States. “If just 5 percent develop lingering symptoms,’’ — about 1 million cases — “and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years,” Harvard Medical School professor Dr. Anthony Komaroff wrote recently in the Harvard Health Letter.

ME/CFS Linked to Viral Infections

The cause of ME/CFS is unknown, but multiple studies have found it follows acute infections with viruses — everything from the 1918 Spanish flu to Ebola. “A certain percentage of people don’t recover,” said Leonard Jason, a researcher at DePaul University.

Scientists are trying to figure out the mechanisms of the disease and why it develops in certain people and not others. According to the Centers for Disease Control and Prevention, ME/CFS shares certain characteristics with autoimmune diseases, in which the immune system attacks healthy tissue in the body. Multiple studies are underway to explore this and other potential causes.

Doctors who specialize in treating ME/CFS are beginning to pivot to long-covid patients. Dr. Peter Rowe, whose clinic at Johns Hopkins is one of the country’s leading centers for ME, has so far seen four long haulers at his practice. “All of them meet the criteria for ME/CFS,” he said.

Despite years of research, there is no biomarker for ME/CFS, so blood tests are ineffective as a diagnostic tool. Rowe’s approach is to tease apart which symptoms may have identifiable causes and treatments, and address those.

One example: A 15-year-old boy Rowe was treating for ME/CFS was so sick that even sitting upright a few hours a day exhausted him and made schoolwork virtually impossible. The boy’s heart rate while lying down was 63; when he stood up it skyrocketed to 113. This effect is known as postural orthostatic tachycardia syndrome, or POTS.

Rowe knew from interviews with the boy’s mother that he had an extraordinary appetite for salt. So much so that he kept a shaker at his bedside and would regularly sprinkle salt on his hand and lick it off.

Rowe hypothesized that he was dealing with a sodium retention problem. To counter it, he prescribed the steroid fludrocortisone, which promotes sodium resorption in the kidneys. Three weeks later, the boy had recovered so dramatically he was helping a neighbor with a landscaping project, pushing rocks around in a wheelbarrow. “He was a different kid,” Rowe said.

Such a course of treatment would not be applicable in a typical case, Rowe said, “but it does emphasize the potential for patients to get a substantial improvement in their CFS symptoms if we address the orthostatic intolerance.”

ME/CFS Usually Misdiagnosed

Beginning in the 1980s, many doctors treating ME/CFS prescribed a combination of cognitive behavioral therapy and an exercise regimen based on a now discredited assertion that the illness had no biomedical origin. That approach proved ineffective — patients often got demonstrably worse after pushing beyond their physical limits. It also contributed to a belief within the medical establishment that ME/CFS was all in your head, a narrative that has largely been refuted.

“ME/CFS was never a mostly behavioral problem, although it has been cast as that,” Rowe said.

Answers have been slow to arrive, but attitudes about the illness are beginning to change. Advocates of patients point to a 2015 report by the Institute of Medicine that called ME/CFS “a serious, chronic, complex, systemic disease” and acknowledged that many doctors are poorly trained to identify and treat it. The CDC says as many as 90% of the estimated 1 million U.S. patients with ME/CFS may be undiagnosed or misdiagnosed.

The problem is exacerbated by a reluctance to provide health care coverage to patients whose illnesses aren’t easily diagnosed, said Joe Dumit, a medical anthropologist at the University of California-Davis.

“Making patients prove they are not just suffering, but suffering from a documented illness, saves money. So, I worry about the way in which covid long haulers will be treated as the numbers rise.” The best treatment in many cases may be rest or reduced workload, “which translates into some form of disability coverage,” he said.

But since long haulers typically sicken immediately after having had a testable viral infection, perhaps they won’t be disbelieved, Rowe said — after all, their illness “starts as a ‘real’ illness.’’

Long haulers may also help researchers better understand the onset of the illness because they are being studied as their symptoms emerge, while ME/CFS patients often aren’t seen until they’ve been ill for two or more years, he said.

“There’s no question that this legitimizes in many ways the experience of people with ME/CFS who have felt they weren’t believed,” DePaul’s Jason said.

In July, the nonprofit Solve ME/CFS launched an initiative aimed at understanding similarities between long haulers and patients with ME/CFS. Dubbed You+ME and underwritten by the National Institutes of Health, it includes an app that enables registrants to record their symptoms and their effects over time.

Such efforts may further diminish the tendency of doctors to ignore patients’ complaints of symptoms that seem to have no evident cause, said Lauren Nichols, 32, a long hauler with a long list of miseries — everything from severe gastrointestinal problems to shingles in her left eye.

“I was one of those people who falsely believed that if you can’t see the illness it’s psychosomatic,” said Nichols, who helps administer Body Politic, a support group for long-covid patients that has found common cause with the ME/CFS community.

“Now I’m living it,” she said. “If I have one message for doctors, it’s ‘Believe your patients.’”

Kaiser Health News is a national health policy news service. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Chronic Fatigue Patients Often Feel Disbelieved in ERs

By Pat Anson, PNN Editor

Patients suffering from chronic fatigue syndrome (CFS) often feel disrespected and disbelieved in hospital emergency rooms, according to a new survey by researchers at Georgetown University Medical Center.

CFS is a complex and poorly understood disorder characterized by extreme fatigue, chronic pain, impaired memory and insomnia. Because many of the symptoms of CFS overlap with other conditions -- including fibromyalgia, depression, and inflammation – a correct diagnosis is often difficult.

In the first study of its kind, Georgetown researchers surveyed 282 CFS patients about their experiences in emergency departments. Two-thirds said they would not go to an ED because they believed they wouldn't be taken seriously or because they had a previous unsatisfactory experience. Only a third said they received appropriate treatment in the ED.

"The high proportion of patients who were basically told 'It is all in your head' by ED staff indicates that there is much misunderstanding and misgivings about the diagnosis of CFS,” said allergist and immunologist James Baraniuk, MD, senior investigator of the study published in the journal Open Access Emergency Medicine.

“These patients should feel they are respected and that they can receive thorough care when they feel sick enough to go to an ED."

The survey found that only 59 percent of the CFS patients had gone to an ED. In that group, 42 percent were dismissed as having psychosomatic complaints. Asked to collectively rate their ED caregivers' knowledge of chronic fatigue, patients gave them a score of 3.6 on a 10-point scale.

Baraniuk says more training is needed for ED staff and physicians to better understand the disorder.

"An already-available CFS Symptom Severity Questionnaire can be used in the ED to assist with the diagnosis of CFS, and to differentiate exacerbations of CFS symptoms from medical emergencies such as heart attacks or infections," Baraniuk says.

The number one reason for going to the ED was orthostatic intolerance, which occurs when a person feels faint when standing or sitting upright because not enough blood is reaching the brain and heart. The symptoms only improve when a person lies down.

"This condition is something that can be readily addressed by ED caregivers. There is a real need for physician education that will improve their efficiency in identifying and treating CFS and in distinguishing CFS symptoms from other diseases in the exam room," he said.

In 2015, an independent panel convened by the National Institutes of Health called for major changes in the way the healthcare system treats people suffering from chronic fatigue – which is also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

“Both society and the medical profession have contributed to ME/CFS patients feeling disrespected and rejected. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder,” the panel reported in its final report.

About one million Americans suffer from chronic fatigue, most of them women. There are no pathogens linked to CFS, no diagnostic tests and no known cures.

Are Chronic Fatigue Sufferers Afraid of Exercise?

By Pat Anson, Editor

Research published in a respected British medical journal is fueling a new debate over exercise and whether it helps or hurts people suffering from chronic fatigue syndrome.

Researchers at King’s College London reported in The Lancet Psychiatry that most chronic fatigue sufferers have “fear avoidance beliefs” that exercise will only make things worse.

Chronic Fatigue Syndrome (CFS) -- also known as Myalgic Encephalomyelitis (ME) –  is characterized by severe tiredness, disturbed sleep and a weakened immune system, along with muscle and joint pain. CFS is a comorbid condition often shared by fibromyalgia and other chronic pain sufferers.

The King’s College study followed 641 CFS patients who were given cognitive behavioral therapy (CBT) and graded exercise therapy that included light exercises such as walking. CBT encourages patients to think differently about their symptoms.

When used together, researchers say the two therapies helped about a third of the patients recover from CFS, primarily by reducing their fear that exercise and activity would only worsen their symptoms.

“Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity,” said Professor Trudie Chalder of King’s College London. “Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”

Many CFS sufferers were outraged by the study and the way it was reported by the news media, feeling it added to a stereotype that they were lazy couch potatoes and malingerers.

“This article has made me so angry. This journalist should live my life for a few days and then maybe they’d reconsider what they wrote,” said one woman in an online comment to a Daily Mail story.

“Sometimes having a shower is like climbing a mountain,” wrote another CFS sufferer. “Until one of these ‘experts’ has had to literally crawl back to bed shaking and ill from just trying to clean their teeth I don’t think they’ll ever be able to understand what we go through.”

“Given the number of athletes and sportspeople diagnosed with this neurological disease, trying to pass it off as 'fear of exercise' is laughable. And lazy!” wrote another reader.

An American neuroscientist also weighed in, disputing the theory that exercise is an effective treatment for ME/CFS.

“Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS,” wrote Mark VanNess, PhD, a professor at the University of the Pacific in a letter published in the ME blog, Just ME. “Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial.

“For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain.”

Some skeptics in the medical community refuse to accept ME/CFS as a real disease, although it was classified as a neurological disease by the World Health Organization in 1969.

According to the National Alliance for Myalgic Encephalomyelitis, nearly 1 million people in the U.S. and 17 million worldwide have ME.