Editor’s note: Find more information about long COVID in Medscape’s Long COVID Resource Center.

Sept. 22, 2022 – Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The Schenectady, NY, businesswoman spent 2 months in the hospital after catching the disease in March 2020. That September, she was diagnosed with long COVID.

“Even a simple task such as unloading the dishwasher became a major challenge,” she says.

Over the next several months, McNulty saw a range of specialists, including neurologists, pulmonologists, and cardiologists. She had months of physical therapy and respiratory therapy to help regain strength and lung function. While many of the doctors she saw were sympathetic to what she was going through, not all were.

“I saw one neurologist who told me to my face that she didn’t believe in long COVID,” she recalls. “It was particularly astonishing since the hospital they were affiliated with had a long COVID clinic.”

McNulty began to connect with other patients with long COVID through a support group she created at the end of 2020 on the social media app Clubhouse. They exchanged ideas and stories about what had helped one another, which led her to try, over the next year, a plant-based diet, Chinese medicine, and vitamin C supplements, among other treatments.

She also acted on unscientific reports she found online and did her own research, which led her to discover claims that some asthma patients with chronic coughing responded well to halotherapy, or dry salt therapy, during which patients inhale micro-particles of salt into their lungs to reduce inflammation, widen airways, and thin mucus. She’s been doing this procedure at a clinic near her home for over a year and credits it with helping with her chronic cough, especially as she recovers from her second bout of COVID-19.

It’s not cheap – a single half-hour session can cost up to $50 and isn’t covered by insurance. There’s also no good research to suggest that it can help with long COVID, according to the Cleveland Clinic.

McNulty understands that but says many people who live with long COVID turn to these treatments out of a sense of desperation.

“When it comes to this condition, we kind of have to be our own advocates. People are so desperate and feel so gaslit by doctors who don’t believe in their symptoms that they play Russian roulette with their body,” she says. “Most just want some hope and a way to relieve pain.”

Across the country, 16 million Americans have long COVID, according to the Brookings Institution’s analysis of a 2022 Census Bureau report. The report also estimated that up to a quarter of them have such debilitating symptoms that they are no longer able to work. While long COVID centers may offer therapies to help relieve symptoms, “there are no evidence-based established treatments for long COVID at this point,” says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also a lot of people out to make a buck who are selling unproven and disproven therapies.”

Sniffing Out the Snake Oil

With few evidence-based treatments for long COVID, patients with debilitating symptoms can be tempted by unproven options. One that has gotten a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who have decompression sickness, or the bends. It’s also being touted by some clinics as an effective treatment for long COVID.

A very small trial of 73 patients with long COVID, published this July in the journal Scientific Reports, found that those treated in a high-pressure oxygen system 5 days a week for 2 months showed improvements in brain fog, pain, energy, sleep, anxiety, and depression, compared with similar patients who got sham treatments. But larger studies are needed to show how well it works, notes Schamess.

“It’s very expensive – roughly $120 per session – and there just isn’t the evidence there to support its use,” he says.

In addition, the therapy itself carries risks, such as ear and sinus pain, middle ear injury, temporary vision changes, and, very rarely, lung collapse, according to the FDA.

One “particularly troubling” treatment being offered, says Kathleen Bell, MD, chair of the Department of Physical Medicine and Rehabilitation at the University of Texas Southwestern Medical Center, is stem cell therapy. This therapy is still in its infancy, but it’s being marketed by some clinics as a way to prevent COVID-19 and also treat long-haul symptoms.

The FDA has issued advisories that there are no products approved to treat long COVID and recommends against their use, except in a clinical trial.

“There’s absolutely no regulation – you don’t know what you’re getting, and there’s no research to suggest this therapy even works,” says Bell. It’s also prohibitively expensive – one Cayman Islands-based company advertises its treatment for as much as $25,000.

Patients with long COVID are even traveling as far as Cyprus, Germany, and Switzerland for a procedure known as blood washing, in which large needles are inserted into veins to filter blood and remove lipids and inflammatory proteins, the British Medical Journal reported in July. Some patients are also prescribed blood thinners to remove microscopic blood clots that may contribute to long COVID. But this treatment is also expensive, with many people paying $10,000-$15,000 out of pocket, and there’s no published evidence to suggest it works, according to theBMJ.

It can be particularly hard to discern what may work and what’s unproven, since many primary care providers are themselves unfamiliar with even traditional long COVID treatments, Bell says. She recommends that patients ask the following questions:

  • What published research is there to support these claims?
  • How long should I expect to do this treatment before I see an improvement?
  • What are the potential side effects?
  • Will the medical provider recommending the treatment work with your current medical team to monitor progress?

“If you can’t get answers to these questions, take a step back,” says Bell.

Sorting Through Supplements

Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many patients with long COVID enter her office with bags of supplements.

“There’s no data on them, and in large quantities, they may even be harmful,” she says.

Instead, she works closely with the Cleveland Clinic’s long COVID center to do a thorough workup of each patient, which often includes screening for certain nutritional deficiencies.

“Anecdotally, we do see many patients with long COVID who are deficient in these vitamins and minerals,” says Lin. “If someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to institute some dietary changes.”

­This usually involves a plant-based, anti-inflammatory eating pattern such as the Mediterranean diet, which is rich in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats such as olive oil and avocados.

Other supplements some doctors recommend for patients with long COVID are meant to treat inflammation, Bell says, although there’s not good evidence they work. One is the antioxidant coenzyme Q10.

But a small preprint study published in The Lancet this past August of 121 patients with long COVID who took 500 milligrams a day of coenzyme Q10 for 6 weeks saw no differences in recovery than those who took a placebo. Because the study is still a preprint, it has not been peer-reviewed.

Another is probiotics. A small 2021 study published in the journal Infectious Diseases Diagnosis & Treatment found that a blend of five lactobacillus probiotics, along with a prebiotic called inulin, taken for 30 days, helped with long-term COVID symptoms such as coughing and fatigue. But larger studies need to be done to support their use.

One that may have more promise is omega-3 fatty acids. Like many other supplements, these may help with long COVID by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone in New York who works with long COVID patients. Researchers at the Mount Sinai School of Medicine in New York are studying whether a supplement can help patients who have lost their sense of taste or smell after an infection, but results aren’t yet available.

Among the few alternatives that have been shown to help patients are mindfulness-based therapies – in particular, mindfulness-based forms of exercise such as tai chi and qi gong may be helpful, as they combine a gentle workout with stress reduction.

“Both incorporate meditation, which helps not only to relieve some of the anxiety associated with long COVID but allows patients to redirect their thought process so that they can cope with symptoms better,” says Flanagan.

A 2022 study published in BMJ Open found that these two activities reduced inflammatory markers and improved respiratory muscle strength and function in patients recovering from COVID-19.

“I recommend these activities to all my long COVID patients, as it’s inexpensive and easy to find classes to do either at home or in their community,” he says. “Even if it doesn’t improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.”

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This September 30 begins the First Days of Update in Rehabilitation Medicine with presentations by international specialists and highlighting the anniversary of the 20th generation of rehabilitation medicine at the Hospital Civil de Guadalajara of the University of Guadalajara.

José de Jesús González Jaime, full professor of rehabilitation medicine and who brought the specialty of rehabilitation medicine to the Civil Hospital of Guadalajara, highlighted these first days for everything that the specialty represents.

“The reason for this meeting is to invite the community to this great academic celebration, linked to the rehabilitation medicine service. It is a very important commemorative event for our hospital and it is very important for the University of Guadalajara. When I went out to do my specialization in 1988 there was no other place than Mexico City, in 1995 and with the support of the authorities and we started with the idea of ​​a specialization program, in 1998 we received the first one and he graduated in 2001 already From then on, there are 20 generations, a total of 46 graduated doctors, all qualified and practicing the specialty”, commented the specialist.

Armando Tonatiu Ávila García head of the Physical Medicine and Rehabilitation Service of the Old Civil Hospital of Guadalajara Fray Antonio Alcalde, highlighted the lack of this specialty at the national levelsince they cannot cover the entire population, since rehabilitation medicine is preventive, seeking disability in each population group.

“We have many challenges, especially considering that quality of life is a worldwide priority for all health systems, we have an excessive demand, the last figure in 2018 there were two thousand 033 certified specialists in rehabilitation medicine and considering With the current population in the country, it implies that there is a doctor in rehabilitation for every 62,000 Mexicans, an insufficient figure,” he said.

“In the first eight months of 2022, the service has granted close to 25,000 assistance services to patients of all ages with some type of functional limitation, We estimate that during 2022 we will grant more than 8,000 specialized rehabilitation medicine consultations. The most frequent diagnoses we have in the service are high risk for neurological damage or damage associated with prematurity in the pediatric population, as well as delayed psychomotor development; in young and middle-aged adults, fractures, sports injuries, spinal problems; and in older adults, cardiovascular diseases and their sequelae, degenerative joint disease, cerebral vascular events and prolonged rest syndrome”.

Ávila García highlighted that the pulmonary rehabilitation of people with long COVID-19 since 2021, but in general the needs of his service have doubled.

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Because research on how to best treat long COVID is still emerging, many patients have worked with one another in online groups and collaborated with researchers to share what helps them most. Here are suggestions from such patients, as well as doctors like Abramoff at Penn Medicine and Bell at UT Southwestern Medical Center.

• Start with your primary healthcare provider. With long COVID now so common, there’s a good chance that your regular healthcare provider has at least some experience with it. They may also be able to rule out other health issues, provide referrals, and generally keep track of your progress.

There’s no one medication that will help everyone with long COVID, but doctors can try to address certain symptoms with prescription drugs. For example, steroids might be used for some people to tamp down inflammation, Bell says. Stimulants such as modafinil are sometimes used to treat fatigue. In small studies, doctors are testing whether antiviral treatments like Paxlovid, used to treat COVID-19, might inhibit the virus. But right now, “you have to do individualized treatments, not one size fits all,” Bell says.

Your regular healthcare provider may also be able to help by diagnosing long COVID in the first place. Some people might not realize that their symptoms are a result of a prior COVID-19 infection, says Smith, the Baltimore teacher. That prompted her to do outreach in high-risk communities, where COVID-19 hit hard and information about long COVID is less available.

• Look for a long-COVID clinic. If your symptoms are particularly severe, multifaceted, or long-lasting, consider looking for a clinic that focuses on the condition. Care at such clinics is often led by a physiatrist—a doctor who focuses on rehabilitation—who can help coordinate with other specialists you may need.

But be forewarned that such care can be hard to find. “There is absolutely a dearth of clinics or practitioners who have a good handle on how to evaluate and treat post-COVID,” Bell says. That can mean long waiting lists. If you do get an appointment, there’s no guarantee of relief, say patient experts such as Lowenstein. Still, some people are helped. Search for providers at Survivor Corps, which has a list organized by patient-led support groups.

• Consult with a specialist experienced in your symptoms. Some people with severe fatigue from long COVID have found that doctors who treat myalgic encephalomyelitis, aka chronic fatigue syndrome, can offer some help, Lowenstein says.

Similarly, those with dizziness or heart palpitations may work with a cardiologist experienced in treating a condition called postural orthostatic tachycardia syndrome, which causes a similar set of symptoms.

People with brain fog might benefit from testing by a neurologist or a neuropsychologist. “The idea is not just to determine what cognitive areas may be challenging but also to identify relative strengths,” says Steven Flanagan, MD, who specializes in brain injury rehabilitation at NYU Langone Health in New York City. That allows providers to “develop compensatory strategies for identified areas of weakness.”

An occupational therapist might also help with brain fog by using cognitive rehabilitation. For example, multitasking can be hard for people with brain fog, Bell says. Learning to stay focused on one task at a time can help people avoid being overwhelmed.

People who have lost smell and taste could try olfactory or smell training, which involves relearning scents over time through practice with strong-smelling items like coffee and perfumes. Check out the resources offered by AbScent, an organization for people with smell loss, or consult with an ear, nose, and throat specialist.

• Consider making dietary changes. Many people with long COVID have tried to address symptoms by changing their diet. Dansereau, the IT technician, for example, adopted a Mediterranean-style diet. “Once I got my diet under control, symptoms gradually subsided,” he says. The Mediterranean diet—high in vegetables, fish, and healthy fats—which is considered anti-inflammatory, is recommended for long-COVID patients by the British Dietetic Association.

Some people notice an improvement when they eat a low-histamine diet, limiting cheeses, fruits, seafood, and nuts, according to the American Academy of Physical Medicine and Rehabilitation. Others have tried eating frequent small meals to help stabilize energy levels, a common strategy for people with chronic fatigue syndrome.

Still, caution is warranted: No one dietary approach yet stands out as being especially effective, Flanagan says, though “adopting a good, well-balanced diet” may help.

And JD Davids, who co-founded the Network for Long COVID Justice, a consortium of patient-led long-COVID groups, says to be skeptical about advice involving expensive supplements or dramatic dietary changes. Discuss any significant changes you are considering with your physician or a dietitian.

• Stay active—but don’t overdo it. Some people with long COVID have found relief through carefully structured activity programs or physical therapy. Such programs should be individualized based on a person’s capacity for exertion, according to medical experts. This may involve a specialist like a cardiologist prescribing a specific amount of activity.

Guidance on treating long COVID emphasizes that patients should be careful not to push too hard. Working out too intensely may worsen symptoms, a problem so common it has a name: “post-exertional malaise.”

Angela Meriquez Vázquez, a COVID-19 long-hauler who is now the interim president of Body Politic, says that’s what happens to her. “I could go for a 3-mile run right now—I believe my body with enough adrenaline could do that,” she says. “But I would pay the consequences for a month.”

Experts recommend pacing yourself. “I encourage folks to remain physically and cognitively active but without going to the point of exhaustion . . . and building up slowly over time,” Flanagan says. For Dansereau, that meant “gradually each day trying to build activity just a little bit more.”

If you have trouble breathing, Abramoff, at Penn, recommends breathing exercises, such as pursed lip breathing, where you breathe in through your nose, then exhale through pursed lips for twice as long. Some patients may qualify for pulmonary rehabilitation, where you work with a respiratory therapist on techniques to help avoid feeling out of breath.

• Identify your triggers. Lowenstein, formerly at Body Politic, recommends tracking your fatigue, brain fog, and other symptoms, trying to see if you can identify a trigger, such as staring at a screen or sitting up for too long.

• Find support. Many people find it helpful to connect with others having a similar experience, says Davids, the long-COVID patient advocate. “There’s a whole world of people out there who aren’t providers who will help you figure out how to live,” he says.

Take care not to send yourself on a worry spiral by focusing just on con­cerning posts, Dansereau says. Look for success stories, and tips from people who say they are getting better.

• Get insurance to pay. One sign that long COVID is gaining medical legitimacy is that there is now a diagnostic code for it. That means healthcare providers can more easily bill insurers, and insurers may be more likely to cover it. Smith, in Baltimore, has fought to ensure that doctors link her symptoms to long COVID in her medical record—and that they know the code: ICD-10 code U09.9.

Even with that code, insurers may refuse to cover care if they don’t consider it “medically necessary” or if you exceed a certain number of appointments with physical or occupational therapists. If that happens, you can appeal with the insurer and, if that fails, request a third-party review.

One other potential problem: In response to the pandemic, Congress temporarily expanded subsidies to people with Affordable Care Act health insurance plans. But this is not permanent and could be rolled back, says Katherine Hempstead, PhD, a senior policy adviser at the health-focused Robert Wood Johnson Foundation. Making the subsidies permanent and expanding Medicaid “are the biggest opportunities we have to make sure everyone has access to treatment,” she says.

• Apply for disability benefits. Long COVID can qualify as a disability when it substantially limits major life activities, according to the Department of Health & Human Services. That means housing accommodations and other protections under the Americans with Disabilities Act may be accessible, and you may be eligible for employer leave.

Qualifying for disability income can be more challenging, in part because long COVID is so new and poorly understood. Someone must show they have been or will be unable to work for at least 12 months. Historically, most people applying for disability income are denied.

In a 2021 speech, President Biden acknowledged the urgent need for such services. “We’re bringing agencies together to make sure Americans with long COVID have access to the rights and resources that are due under the disability law,” he said, “so they can live their lives in dignity and get the support they need.”

To find more information and resources for people with long COVID, go to the federal government’s long COVID guide.

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Last week, H.R.8746 — Access to Inpatient Rehabilitation Therapy Act of 2022 was introduced to ensure Medicare beneficiaries in inpatient rehabilitation facilities (IRFs) are able to access all skilled, medically necessary rehabilitation therapies that are most appropriate for their condition. This bill, also known as the “three hour rule bill,” would expand the current three hour rule in which Medicare requires IRF patients to be able to participate in, and benefit from, three hours of rehabilitation therapy per day, five days a week (or 15 hours over a seven day period). The current regulation only allows physical therapy (PT), occupational therapy (OT), speech therapy, and orthotics and prosthetics care to count towards the three hour requirement. As a result, many patients have difficulty accessing additional forms of therapy that may be more appropriate.

During the COVID-19 public health emergency (PHE), the three hour rule has been waived in its entirety. If the Access to Inpatient Rehabilitation Therapy Act is enacted, it would ensure that IRFs maintain flexibility after the expiration of the PHE. Most importantly, the legislation would allow certain therapies, including recreational therapy, cognitive therapy, and respiratory therapy, to count towards the three hour rule after the patient’s admission. These additional therapies and skilled modalities would be identified by the Secretary of Health and Human Services (HHS). At the time of admission, the existing three hour rule would still apply, ensuring that IRF admissions do not increase (and thus add to underlying costs for the Medicare program) due to the new flexibility.

This legislative solution has been developed over several years with Members of Congress and a group of stakeholders, including the American Medical Rehabilitation Providers Association (AMRPA), the American Academy of Physical Medicine & Rehabilitation (AAPM&R), the Brain Injury Association of America (BIAA), and the American Therapeutic Recreation Association (ATRA).

For additional information, please refer to Congressman Courtney’s press release.

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Objective

We aim to assess the awareness and evaluation pattern among physiatrists regarding cancer rehabilitation and associated barriers to access.

Design

The present study is a cross-sectional study in the Physical Medicine and Rehabilitation (PMR) Association Annual Meeting in Puerto Rico that used a 10-item questionnaire to summarize physiatrists’ clinical patterns with their persons diagnosed with cancer (PDWCs).

Results

Thirty-eight (66.7%) participants answered they received minimal to no education about cancer rehabilitation benefits. Cancer patients represented 10% or less of the weekly patient load for 47 (82.5%) physiatrists surveyed. The most common type of cancer encountered was breast cancer for the management of adverse effects. Twenty-nine (50.9%) physiatrists answered that a multifactorial barrier was the cause for limited services within this population group. All participants agreed that rehabilitation is at least sometimes beneficial for cancer patients, and 54 (94.7%) believed these services are needed.

Conclusion

Although rehabilitation specialists learn about the benefits of rehabilitation for PDWCs, there continues to be a limited number of PDWCs evaluated, mainly due to poor access, lack of information about cancer rehabilitation, and economic difficulties. Further efforts should be made to emphasize the importance of integrating rehabilitation techniques in the care of PDWCs.

Introduction

Few diagnoses in medicine impose a larger physical, emotional, and economic burden than cancer [1]. Overall, cancer represents the second leading cause of death in the USA after cardiovascular diseases [2]. Recent estimates show that almost 17 million people have a history of cancer in the USA, with approximately two million new cases expected in 2021 [3,4]. As medical advances allow for earlier diagnosis and better treatment, cancer survivorship has increased significantly in the last few decades [3]. Likewise, we are now seeing the short- and long-term comorbidities associated with a cancer diagnosis. As such, addressing the unique functional and psychological needs of persons diagnosed with cancer (PDWCs) is paramount to enhance not only their longevity but also their quality of life (QOL).

Cancer rehabilitation entails an impairment-driven multidisciplinary approach aimed at improving the QOL of PDWCs by minimizing the functional and psychological effects of cancer and its treatments. To this end, the role of the physiatrist has been increasingly recognized as essential for the holistic management of PDWCs [5]. Physiatrists are trained to identify, evaluate, and manage the physical and psychological adverse effects that affect the independence and QOL of patients. Unfortunately, studies have shown that only 1%-2% of cancer-associated adverse effects are addressed by rehabilitation specialists [6].

Although the benefits of prehabilitation and rehabilitation have been extensively documented, these services continue to be underpromoted and underutilized by this population [7,8]. Lack of knowledge about the benefits of cancer rehabilitation, socioeconomic barriers to access, and suboptimal adherence have all been identified as contributing factors to limited care [9]. Recently, we found that most oncologists in Puerto Rico receive minimal to no formal education about the benefits of rehabilitation in this population, limiting their referral patterns [10]. We sought to assess the knowledge and perceptions among physiatrists about rehabilitation services for PDWCs.

Materials & Methods

Survey

A group consisting of one oncologist and three Physical Medicine and Rehabilitation (PMR) physicians discussed relevant aspects of cancer rehabilitation to develop a questionnaire that allows the identification of important aspects within cancer rehabilitation education and practice. A questionnaire was developed based on previously published instruments with permission from their authors [11,12]. The questionnaire was reviewed by the department’s research committee, one epidemiologist, and faculty for recommendations. The study was approved by the University of Puerto Rico School of Medicine’s Institutional Review Board before its distribution. The 10-item questionnaire assessed demographic data, experience, educational background, and practice patterns. Demographic questions referred to physician age, sex, type of practice, years since completion of residency, and approximate percentage of cancer patients as part of their caseload seen per week. The initial data also included questions about subjective cancer rehabilitation education and specialty training backgrounds. The physiatrists were asked about their perspectives on cancer rehabilitation, specific cancer diagnoses encountered in practice, and the associated complications for which the patient was referred to the physiatrist. Physicians were asked about specific barriers for patients receiving cancer rehabilitation services and whether they thought cancer rehabilitation was necessary.

Participants

The study took place at the Regional Annual Meeting of the Association of Physical Medicine and Rehabilitation of Puerto Rico in 2017. Physiatrists encountered during the meeting were invited to participate in our study. An informative sheet about the study was delivered to the participants willing to answer the survey where we emphasized to subjects that participation was voluntary and confidential. After the participants verbally agreed to participate, the survey was shared for completion.

Data collection

Questionnaires were collected by the investigators after completion and separated to avoid identification. An identification number was assigned to each participant, and all collected data were kept secure and private using a locked computer at the PMR department at the university where only the investigators were able to access the data. Data was recorded using Microsoft Office Excel 2016 (Microsoft Corp., Redmond, WA, USA).

Statistical analysis

Questionnaire data were analyzed using IBM SPSS for Windows version 25 (IBM SPSS Statistics, Armonk, NY, USA). Characterization of the study group was completed by descriptive analysis. Means and standard deviations (SDs) within the groups were determined for each variable. When survey items allowed participants to provide more than one response, all responses were included for analysis.

Results

Fifty-seven physiatrists agreed to complete our 10-item survey. Participant demographics are presented in Table 1. The mean (SD) participant age was 49 (13.2) years old, with an even sex distribution. Most surveyed physiatrists reported having practiced the specialty for more than 10 years. More than half practiced primarily in the private setting, while a quarter said their practice was mainly in an academic medical center. The majority (82.5%) indicated that cancer patients represent 10% or less of their weekly patient load.

Characteristic Total
Age in years (mean (SD)) 49 (13.2)
Sex  
Female 29 (50.9)
Male 28 (49.1)
Years since completing training  
≤5 14 (24.6)
6-10 6 (10.5)
>10 37 (64.9)
Practice setting  
Private or single specialty group clinic 32 (56.1)
Hospital based 7 (12.3)
Academic medical center 2 (3.5)
Multispecialty 14 (24.6)
No answer 2 (3.5)
Training in oncologic rehabilitation  
Advanced 0 (0)
Moderate 18 (31.6)
Minimal 36 (63.2)
None 3 (5.2)
Percentage of cancer patients evaluated per week  
<10% 47 (82.5)
10% 8 (14)
>10% 2 (3.5)
Is rehabilitation beneficial?  
Sometimes 10 (17.5)
Frequently 9 (15.8)
Always 38 (66.7)
Is a cancer rehabilitation program necessary?  
Yes 54 (94.7)
No 3 (5.3)
Would you refer a patient for a cancer rehabilitation program?  
Yes 57 (100)
No 0 (0)

In terms of their training, 18 (31.6%) physiatrists subjectively said they had received moderate education about cancer rehabilitation and its benefits, whereas 38 (66.7%) had received minimal to no education. Forty-two (73.7%) participants answered that the patient’s prognosis did not affect their referral for physical or occupational therapy.

Breast cancer was the most commonly evaluated cancer, followed by brain and spine cancer (Table 2). Thirteen (22.8%) physiatrists answered that they evaluate more than one type of cancer in their clinic. From a functional standpoint, weakness, neuropathic pain, ambulation dysfunction, and prolonged immobilization were the most commonly evaluated disabilities (Table 3).

Cancer type Physiatrists (number (%))
Breast 23 (40.4)
Multiple 13 (22.8)
Brain 5 (8.8)
Spine 4 (7)
Lung 1 (1.8)
Prostate 1 (1.8)
Gynecologic 1 (1.8)
Neck 1 (1.8)
No response 8 (14)
Symptom Physiatrists (number (%))
Lymphedema 15 (26.3)
Dysphagia 7 (12.2)
Weakness 45 (78.9)
Prolonged immobilization 33 (57.9)
ADL difficulties 32 (56.1)
Neuropathic pain 41 (71.9)
Orthosis 10 (17.5)
Osteoarthritis 13 (22.8)
Ambulation difficulties 39 (68.4)
Body image 3 (5.2)
Sexual dysfunctions 3 (5.2)
Amputations 15 (26.3)
Contractures 20 (35.1)
Nociceptive pain 20 (35.1)
Cognitive dysfunctions 5 (8.8)
Pelvic floor dysfunctions 2 (3.5)

Lack of knowledge about the benefits of rehabilitation was identified as the most common barrier to starting a rehabilitation program in this population; however, 29 (50.9%) participants considered this to be a multifactorial problem. All participants agreed that rehabilitation is at least sometimes beneficial for cancer patients, and 54 (94.7%) believed these services are needed. All subjects agreed that, if available, they would refer their patients to a comprehensive cancer rehabilitation program.

Discussion

To our knowledge, this is the first study describing the knowledge and attitudes toward cancer rehabilitation among general physiatrists in Puerto Rico. Our cohort consisted of 57 physiatrists with a mean age of 49 years, similar to recent national age average estimates [13]. Physiatrists serve an important role in the care of PDWCs. As other studies have established, many people live with cancer as a chronic condition with substantial morbidity and functional disability [7,12]. Physiatrists are in a unique position to evaluate and manage these impairments with the goal of improving functional, psychosocial, and psychoemotional outcomes in this population [12,14].

Fatigue, pain, and impaired mobility are common adverse effects experienced by cancer patients, which could benefit from an evaluation from a physiatrist. Additionally, recent studies have shown that chemotherapy-induced peripheral neuropathy persists in approximately 40% of cancer survivors [2]. Despite the high prevalence of rehabilitation concerns, cancer patients account for less than 10% of the weekly load for most of the surveyed physiatrists. This, along with a stable incidence of approximately 6,000 yearly cancer diagnoses from 2010 to 2017, suggests that most PDWCs in Puerto Rico are not receiving comprehensive care for the musculoskeletal and neurologic adverse effects associated with their diseases [15].

Despite an overlap between the cancer population and other groups within the scope of a general physiatrist, holistic rehabilitation care of cancer patients requires discrete clinical experiences to the breadth of the cancer population and their unique needs. To this end, most of the surveyed physiatrists (66.7%) reported receiving minimal to no formal training during residency about cancer rehabilitation. Considering that a similar percentage (64.9%) of our participants reported having practiced for more than 10 years, future studies evaluating the relationship between years removed from residency and the recent Accreditation Council for Graduate Medical Education (ACGME) requirement that physiatrists demonstrate competence in the rehabilitation and psychosocial care of patients with cancer could provide valuable insight on recent trends and progress [16].

Further, a focused training curriculum in oncology rehabilitation is not standard in most PMR residencies [8]. A study among residency program directors found that cancer rehabilitation education could be improved in both quantity and quality [17]. Likewise, specialized training remains limited to nine fellowships in the USA [18]. This data suggest two important barriers to cancer rehabilitation: (1) current clinical experiences during residency are not sufficient for the general physiatrist to address the unique challenges of the cancer patient, and (2) at the current pace, the output of fellowship-trained cancer rehabilitation subspecialists will not be able to meet the increasing demands for such services. Taken together, these findings highlight the importance of increasing exposure to cancer patients during PMR residency to ensure that general physiatrists attain competence and confidence in the evaluation and management of this population.

Most of the surveyed physiatrists identified a lack of knowledge about its benefits and poor understanding of the referral process as the main barriers to oncology rehabilitation care. To this end, physiatrists must lead the education efforts to address these issues, both among other healthcare providers and in the community. Participating in national oncology forums, offering conferences at local oncology meetings, and participating in routine multidisciplinary meetings are all initiatives that could increase the overall awareness of the physical and psychosocial benefits of cancer rehabilitation.

Most rehabilitation programs establish goals based on functional status prior to diagnosis, stage of disease, and prognosis. In our study, all of the surveyed physiatrists consider cancer rehabilitation beneficial, regardless of the patient’s disease stage or prognosis. Other studies have shown that only 35% of physiatrists accepted cancer patients regardless of their prognosis [11]. Evidence has shown that patients benefit from rehabilitation care throughout all stages of the disease and that, as cancer advances, physical training and rehabilitation improve performance in daily life, psychosocial status, and QOL [19]. Likewise, recent studies showing the benefits of an intensive rehabilitation program for PDWCs awaiting surgical intervention provide further evidence of the value of a comprehensive rehabilitation program, either at home or at a specialized center [20,21]. When deemed necessary, an inpatient rehabilitation program may allow for a multidisciplinary and comprehensive approach to managing these limitations [22].

Our study represents a small cohort limited to the physiatrists community in Puerto Rico, which limits the generalizability of our results. Future studies aimed at identifying barriers in specific geographic areas and socioeconomic circumstances may allow for a targeted local and national response. Recall bias is another possible limitation given the design of our study.

Conclusions

Rehabilitation care is needed but currently is suboptimal to meet the growing demand of PDWCs. Unfortunately, most patients are not routinely referred to physiatrists for evaluation of musculoskeletal and neurologic adverse effects. Although most physiatrists acknowledge the value of rehabilitation care for this population, multiple barriers that affect its delivery exist. Some of these barriers include limited exposure to the cancer population during residency, lack of knowledge of its benefits, limited access to rehabilitation services, and the need for improvement in referral mechanisms.



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People today are often unable to fully stretch their chest cavity when breathing due to poor posture. Patients with pulmonary obstruction, asthma, pulmonary fibrosis and other lung diseases experience shortness of breath, affecting their quality of life.

But lung rehabilitation exercises can strengthen the respiratory muscle groups, improve lung function, and relieve lung disease symptoms.

Diseases that Weaken Lung Function

There are two common types of lung diseases that can weaken lung function.

Obstructive pulmonary disease: The patient is unable to expel all the air from his or her lungs. Examples include lung injury or narrowing of the airways due to chronic obstructive pulmonary disease (COPD), asthma, or bronchiectasis.

Restrictive lung disease: There is a decrease in the total volume of air that the lungs are able to hold. For example, pulmonary fibrosis, interstitial lung disease, scoliosis, and obesity can result in stiffness of the lungs, tightness of the chest cavity, and weakness of the respiratory muscles.

The common symptoms of these two groups of patients are strained breathing and shortness of breath. Since whenever the patients move they wheeze, they try to avoid moving even more. This causes a vicious cycle, and their physical performance slowly declines.

In fact, exercise is the best rehabilitation treatment for lung disease. Lung rehabilitation exercises can improve the endurance and strength of the respiratory muscles and surrounding muscles, which in turn can enhance lung function and improve symptoms such as shortness of breath.

“For instance, for patients with pulmonary fibrosis, if their lung function is only three-fourths, pulmonary rehabilitation can improve the remaining function to four-fifths or five-sixths,” said Jen-Ting Lee, physiotherapist at the Department of Physical Medicine and Rehabilitation, Taipei Veterans General Hospital in Taiwan.

Epoch Times Photo

3 Major Lung Rehabilitation Exercises to Improve Lung Function

  1. Aerobic exercise

Aerobic exercise is a rhythmic movement of the large muscles in the entire body, which can improve muscle oxygen intake and cardiorespiratory function.

Calisthenics, walking, jogging, and cycling are all exercises that we can do frequently. The exercise duration should be at least 20 to 40 minutes at a time.

However, some lung disease patients cannot do exercises for 20 minutes at a time; they may do exercises multiple times a day, for the total exercise time to be added up to 20 minutes. Visible results will show after they do exercises three to five times a week for eight to 12 weeks.

  1. Strength training

Strength training can improve muscle endurance and muscle strength, thus enhancing respiration intensity and exercise tolerance.

Respiratory muscles are mainly composed of diaphragm muscles. However, strengthening the diaphragm muscles alone is not enough. If you want to breathe more easily during exercise, you also need to train other accessory respiratory muscles.

“These accessory respiratory muscles are all located in the upper body. So for patients with lung diseases, it’s important to train the upper body muscles,” said Lee.

You can use dumbbells, elastic bands, and other tools to increase the weight during exercise. The starting strength of the training is 50 percent to 60 percent of the one repetition maximum (1RM). 1RM is the maximum weight that a person can bear at one time. For example, if a person can’t lift a dumbbell of 20 pounds a second time after lifting it once with all his strength, then 20 pounds is the person’s 1RM. You can increase the strength gradually as the training progresses.

  1. Breathing exercises

Chest breathing, abdominal breathing, localized breathing, and full breathing can all train the lungs.

Speaking of breathing exercises, people first think of abdominal breathing. Abdominal breathing is indeed the best way of gas exchange, but some people are not suitable to do this exercise, such as patients with obstructive lung disease. If you don’t feel comfortable with abdominal breathing, it is equally effective to use other breathing methods.

Abdominal Breathing

Put your hands on your abdomen, inhale slowly through your nose, and feel your abdomen bulge. After inhaling to the fullest, exhale slowly through your mouth.

Epoch Times Photo
Lung rehabilitation exercise: abdominal breathing + round lip exhalation

 

“Many people do it wrong, because they push their abdominal muscles too hard,” Lee pointed out. When the body relaxes and allows the lungs to hold the air, the diaphragm will press down, and the stomach will naturally bulge.

People with obstructive lung disease are unable to exhale all the air in their lungs. They can use the “round lip exhalation” method, which is exhaling while puckering the lips. Round lip exhalation can increase positive pressure in the airways to help discharge the air.

Chest Breathing

Put your hands on your chest, slowly inhale through your nose, feeling the air filling your chest cavity, and your hands will slightly lift up along with your chest. After inhaling to the fullest, exhale slowly through your mouth.

Epoch Times Photo
Lung rehabilitation exercise: chest breathing

 

When breathing, pay attention to the relaxation of your shoulder and neck muscles, especially that your shoulders should not be raised.

Localized Breathing

Place both hands on your ribs, and your fingers will slightly part due to rib cage expansion as you breathe in to the fullest. It is better to do this exercise while lying down, because your shoulders are relaxed when lying down, so it is not easy to use the shoulder strength. And the effect will be better.

Epoch Times Photo
Lung rehabilitation exercise: localized breathing, with better results when lying down

 

The most important accessory respiratory muscles are the intercostal muscles. There are 12 ribs, with the first to sixth ribs being the upper ribs, and the seventh to twelfth ribs being the lower ribs.

When you breathe in to the fullest, the upper ribs expand forward to increase the space between the front and back of the chest cavity; and the lower ribs open upwards and to the sides to increase the left and right spaces of the chest cavity. As a result, the entire thorax opens up.

Localized breathing trains the intercostal muscles, allowing the thorax to expand more fully during breathing. This training is very important for patients with restrictive lung disease.

Full Breathing (i.e. Chest Breathing + Abdominal Breathing)

Place one hand on your chest and the other on your abdomen. When inhaling, your abdomen will bulge naturally, then deliberately inhale a little more, so that your chest will also bulge slightly. Then exhale. If you can’t expel all the air in your lungs, you can lower your head slightly to exhale all the air.

Epoch Times Photo
Lung rehabilitation exercise: full breathing

 

The way people normally breathe is full breathing. However, full breathing training is more intense than normal breathing.

When doing breathing exercises, you can combine them with thoracic exercises, to expand your chest cavity more fully.

The way to do this is to open your arms to the sides of your body when inhaling, and to fold your arms like holding a ball when exhaling. And then cross your arms in the lower front of your body, with your eyes looking towards your navel. Thoracic exercises are also beneficial for people with tight chests and poor breathing.

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Children with Down syndrome (DS) who received inspiratory muscle training (IMT) plus aerobic exercise training demonstrated more significant improvements in physical fitness compared with those with DS who received aerobic exercise training alone, according to the results of a recent randomized controlled trial (ClinicalTrials.gov identifier: NCT04767412) published in the Archives of Physical Medicine and Rehabilitation

Recognizing that children with DS frequently have low peak aerobic capacity, heart rate, and muscle strength — all of which are considered key factors contributing to lower physical fitness in this population — the investigators sought to assess the impact of aerobic exercise on physical fitness and the effect of IMT on respiratory muscle strength in these individuals. Additionally, the researchers sought to compare the effectiveness of combined aerobic exercise plus IMT vs aerobic exercise alone in improving physical fitness among children with DS.

A total of 40 girls and boys between 7 and 10 years of age (mean age, 7.8±1.5 years) were enrolled in the current study. The participants were randomly and equally divided into 2 groups (A and B). The study was conducted between October 2020 and December 2020. All of the patients were recruited from a private physical therapy center located in Egypt. Study inclusion criteria were as follows: (1) BMI: 5th percentile to less than 85th percentile; (2) ability to understand and follow verbal commands and instructions used during training and tests.


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All of the study participants in groups A and B received 30 minutes of aerobic exercise training 3 times per week for 12 weeks. Those in group B also received an additional 30 minutes of IMT prior to each aerobic exercise session. The main outcome measure was physical fitness of the participants, which was evaluated prior to and after the treatment via use of the following tools: (1) the 6-minute walk test (6MWT), to assess aerobic capacity; (2) the Gio Digital Pressure Gauge, to detect the intensity of IMT and improvement in respiratory muscle strength following the training program; and (3) the Brockport physical fitness test (BPFT), which provides a health-related assessment of aerobic functioning in children with disabilities.

The investigators evaluated the results of the following measures: maximal inspiratory pressure (MIP); maximal expiratory pressure (MEP); submaximal aerobic endurance using the 6MWT strength; and endurance using the curl-up, dumbbell press, trunk lift, standing long jump, seated push-up, pull-up, flexed-arm hang, and back saver sit and reach tests. Per post hoc within-group analysis, a statistically significant difference (P <.05) for all of these measures was reported in the 2 groups.

Following use of the intervention, participants in group B demonstrated significant improvements in MEP; MIP; and the results of the 6MWT, curl-up, dumbbell press, trunk lift, standing long jump, seated push-up, pull-up, flexed-arm hang, and back saver sit and reach tests (P <.05 for all), compared with participants in group A.

A main limitation of the current study is its small sample size, because of the exclusion of children who engaged in regular physical activity. Further, the enrollment of children between the ages of 7 and 10 years only might limit the generalizability of the results.

The investigators concluded that both aerobic exercise training and IMT “significantly improved physical fitness in children with DS,” with the combination of aerobic and inspiratory muscle training resulting in the most significant improvement. Based on their results, they recommended that further research investigate “the effect of IMT on quality of life” and “on long-term goals in children with DS.”

Reference

Elshafey MA, Alsakhawi RS. Inspiratory muscle training and physical fitness in children with Down syndrome: randomized control trial. Arch Phys Med Rehabil. Published online May 6, 2022. doi:10.1016/j.apmr.2022.04.005

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With ongoing COVID-19 vaccination, the ordeal of U.S. hospitals packed with critically ill patients seems to be waning. Today, COVID long haulers represent the most pressing demand for care.

Top view of woman laying on bed in bad mood. Unhappy female at home alone.

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If you’re still coping with symptoms three months or more after being infected with COVID-19, you’re considered a COVID long-hauler. Post-COVID recovery clinics are being launched nationwide to address this still-growing need.

With 200-plus symptoms linked to long COVID, treatment starts by pinpointing specific medical conditions and referring patients to the right clinicians. These might be lung specialists, heart specialists or brain rehabilitation experts.

For people with long COVID, recovery can feel like one step forward and two steps back. It’s frustrating when typical job functions or previously easy exercise – like a short walk around the block – wipe you out and you can’t get out of bed for the next two days. Long-COVID treatment protocols address that excessive fatigue.

Long COVID Symptoms

Post-COVID syndrome can encompass multiple organ systems and a wide range of symptoms including:

  • Fatigue.
  • Post-exertional malaise.
  • Brain fog.
  • Memory issues.
  • Headache.
  • Sleep problems.
  • Shortness of breath.
  • Muscle aches and joint pain.
  • Speech/language issues.
  • Heart palpitations.
  • Tachycardia (rapid heartbeat).
  • Dizziness and balance problems.
  • Diarrhea and other gastrointestinal symptoms.
  • Joint pain.
  • Chest tightness or pain.

Wide-Ranging Long-COVID Effects

Dr. Monica Verduzco-Gutierrez is a physiatrist, professor and chair of the department of rehabilitation medicine at the Long School of Medicine at the University of Texas Health at San Antonio. She developed the Post-COVID Recovery Clinic at the UT Health Science Center at San Antonio.

“Probably one of the bigger motivators was seeing some of the disproportionate effects that COVID was having on certain populations, including those from marginalized groups and minority groups,” Verduzco-Gutierrez says. Creating the post-COVID program was important to serve the entire community.

Some patients have had severe COVID-19 disease courses that required hospitalization, Verduzco-Gutierrez says. Others might be referred to the clinic by their primary care physicians, or they refer themselves. “Some of them hear about it from social media contacts and are just trying to get as much help as they can,” she says.

Fatigue is among the most common complaints of COVID long-haulers. “Definitely, we hear a lot about fatigue,” Verduzco-Gutierrez says. “And it’s just debilitating, overwhelming fatigue. Very otherwise fit, healthy people try to go for a day at work – and they are in bed by 5:30 and can barely get up the next day.”

An international review published in August 2021 identified 203 long-COVID symptoms in 10 of the body’s organ systems. Researchers analyzed survey responses from nearly 4,000 participants and after six months, the top three symptoms were fatigue, post-exertional malaise and cognitive dysfunction. However, symptoms can occur across the board in various combinations.

“Some people feel short of breath just trying to walk around,” she says. “People are getting palpitations that are abnormal. Their blood pressure may be too high or too low. They have symptoms like numbness or tingling.” Hair loss and skin changes are also among myriad possible symptoms.

Post-COVID Screening

Dr. Robert Kotloff is a professor of medicine at the Perelman School of Medicine at the University of Pennsylvania and director of Penn Medicine’s Harron Lung Center in Philadelphia. He works with patients at the post-COVID respiratory clinic, one of the hospital’s specialty post-COVID clinics.

At Penn, patients are initially seen at the comprehensive recovery clinic run by the physical medicine and rehabilitation team. They undergo thorough screening to determine whether they’re suffering from post-COVID syndrome.

Team members “do a comprehensive assessment from head to toe, meaning symptoms of various organ systems,” Kotloff explains. “And they screen and decide if the patients then need to be sent to more specialized clinics. For instance, patients who have respiratory symptoms or respiratory issues will be sent to my clinic.”

In other cases, screening may reveal signs of heart problems like myocarditis – inflammation of the heart muscle usually caused by a viral illness. Tests such as EKGs and cardiac ECHOs are used to rule out cardiac complications of COVID-19. Depending on the results, patients may be referred to the post-COVID cardiac program.

Long COVID Treatment

Treatment for long COVID depends on individual symptoms. For the most common problems linked to long COVID, treatment and rehabilitation include the following:

  • Cognition and speech-related issues. Cognitive speech therapy can help patients improve memory and attention, planning and organization, problem-solving, language and naming skills.
  • Shortness of breath. Breathing exercises and respiratory therapy can gradually improve patients' lung function.
  • Fatigue. Rehab with physical therapists includes encouraging patients to pace themselves, prioritize their activities and discover exercise types and duration they can endure without excessive fatigue.
  • Abnormal heart rate changes. Postural orthostatic tachycardia syndrome can occur with long COVID. In POTS, people (usually women) experience a too-high increase in heart rate when they move from a lying to a standing position. As with similar conditions involving the autonomic nervous system, exercising gently, starting from a lying-down position, is important for patients who experience palpitations or rapid heartbeats.

Brain fog might be a too-mild misnomer for the significant cognitive effects that COVID long-haulers can experience, Verduzco-Gutierrez says. "They’re having really big issues with concentration and memory, trying to find words, trying to do things they did before,” she says, similar to other patients she’s seen with brain injuries.

Treatment for brain-related symptoms can be challenging. “You use some neurocognitive rehabilitation techniques,” Verduzco-Gutierrez says. “You have to try to reverse what can be reversed. You have to try to decrease inflammation that a patient may have. You have to make sure that you rule out something (else) that could be going on with the brain. You have to make sure you treat any other symptoms – like if they have headache or poor sleep – anything that could also be contributing.”

Speech can be impacted. “Some patients may be having a hard time saying what they want to say, getting the words out that they want to get out and remembering really simple words that they should already know,” Verduzco-Gutierrez says.

To guide treatment, she says, “patients (may be) referred for neuropsychological examination so that they can get really in-depth testing to see: Is it processing speed? Is it words? Is it attention? Is it executive function? And then we may send them to a neurocognitive rehabilitation program to work on those issues.”

Some patients benefit from participating in research trials on post-COVID syndrome to find out exactly what’s going on, she says.

Patients might need evaluation and treatment for new medical conditions – like diabetes or lupus – that may be caused or worsened by COVID-19. “It accelerates anything,” Verduzco-Gutierrez says. “So, if you maybe have a predisposition to high blood pressure or a predisposition to diabetes, then this may be something that really causes you to become diabetic,” or be diagnosed with hypertension.

At the specialty respiratory clinic, “basically, I’m seeing two types of patients,” Kotloff says. “I’m seeing patients who were quite ill with COVID pneumonia, most of them typically hospitalized, who were then successfully discharged and who have a protracted recovery, during which the lungs have to heal from pneumonia.”

Post-COVID patients are different. “Curiously, many of these individuals have had only mild infection,” Kotloff says. “The overwhelming majority have not required hospitalization – and yet they’re plagued with lingering symptoms for many weeks to months after their acute infection.”

For “typical” COVID-19 patients who were hospitalized with severe respiratory illness, “we can point to an abnormal chest X-ray or an abnormal CT scan,” Kotloff says. “When we check their lung function studies, at least early on, they tend to be abnormal. Their oxygen levels tend to be abnormal. So, we have objective evidence to point to as to why it’s taking time for them to heal and why they’re having their symptoms.”

By contrast, shortness of breath is why most patients with post-COVID syndrome are initially referred to the respiratory clinic. “The long COVID patients, at least those who never had pneumonia, are more of a mystery because all of their traditional studies looking for respiratory causes of shortness of breath end up being normal,” Kotloff says.

Even so, almost all these long COVID patients describe the same type of shortness of breath. “Most of the post-COVID patients I’ve spoken to have either a combination of exertional and resting shortness of breath, or some of them even have exclusively resting shortness of breath.”

Instead of the usual feeling of needing to catch your breath after a run, Kotloff says, “for the post-COVID patients it’s more an uncomfortable awareness of breathing, or some will describe it as the inability to take a deep and satisfying breath.”

When treating patients recovering from pneumonia, Kotloff says, “a lot of this is what I call ‘tincture of time’ and incremental exercise to get them back on their feet.” Most will eventually recover with minimal to no effect on lung function, he says, and oftentimes they’ll benefit from enrolling in a pulmonary rehabilitation program.

Treatment for long COVID patients with shortness of breath is more complicated, he says. “It’s a bit more frustrating because what we’d like to tell them is, ‘Go out and try to exercise. Reintroduce a routine. Take a short walk and gradually increase the duration of that walk.’” However, post-exertional malaise – in which people feel fatigue markedly out of proportion to an activity – is a problem for many long COVID patients. “These patients will attempt exercise or attempt an active day and then will be totally wiped out for the next two.”

Long COVID symptoms are often more multiplicative than additive, says Dr. Becky Lansky, a physiatrist and part of the COVID-19 recovery program at Emerson Hospital in Concord, Massachusetts. When patients complain of symptoms like brain fog or decreased concentration, she says, fatigue ties in as a major symptom.

“When you’re tired, you are more irritable,” Lansky explains. “That irritability, along with the difficulty concentrating, makes your memory worse – it sort of makes everything worse. So, many things can affect cognition.”

Determining a patient’s fatigue level helps clinicians prescribe appropriate exercise. “I believe that exercise is medicine, so everybody gets an exercise routine,” Lansky says. “But it’s very different for somebody who has difficulty walking to the bathroom as opposed to somebody who is able to walk a half-mile.”

First, it’s important to make sure that underlying physical problems aren’t contributing to excessive fatigue. “There are people who have inflammation of the heart that’s (causing) the fatigue,” Lansky says. “There are people who have decreased respiratory expansion and difficulty breathing, so there are breathing protocols to work with. There are people who have malabsorption syndrome because their gut microbiome is off, so therefore they need iron or B12.”

For other people, long COVID symptoms may be set off by pushing their bodies too hard. A graduated exercise program can meet patients where they are in terms of fatigue and other symptoms, Lansky says.

A condition called dysautonomia, a problem with the body’s control of involuntary actions, is a common long COVID symptom. “The autonomic system of the body is not working appropriately,” Lansky explains. “Which means sometimes the heart beats too quickly and sometimes the heart doesn’t beat fast enough. If that’s the case, you have to start all exercises lying down, because you don’t want to stress the heart too much.”

Working with physical and occupational therapists can help you safely resume exercise and work activities to the degree that you can tolerate.

Lifestyle Management and Long COVID

Many everyday tasks pose a challenge for long COVID sufferers. Post-COVID rehabilitation includes:

  • Work limitations. Taking frequent breaks throughout the day and working with occupational therapists may make job responsibilities more manageable for some long COVID patients.
  • Exercise and activities. Building stamina takes time when getting back to activity.

Work activity – even concentrating on a computer screen – can become a lot harder with long COVID. It goes beyond normal tiredness that anybody may experience after sitting at the computer for six hours or more a day, Lansky says.

With deconditioning due to being sick for a few weeks, combined with various long-COVID effects, “you fatigue significantly faster,” Lansky says. “So breaks are a critical part of recovery.”

Long-COVID treatment includes helping long haulers learn how to prioritize their health as they work. “You set your alarm and say: OK, I’m going to read emails for an hour, and then I’m going to lie down,” she says. “Then I’m going to check in with all my symptoms and see where I’m at, rest and recover and then I can go back and do some more.”

Your return to physical activity should take each body system into account including the heart, lungs, blood-clotting, gastrointestinal and musculoskeletal systems. Rehabilitation experts are sharing emerging best practices for resuming activity after COVID, including for people with long COVID:

  • Have a comprehensive medical evaluation.
  • Avoid being entirely sedentary or immobile, which can affect circulation and muscle health.
  • Return gradually to activity in a slow, stepwise manner.
  • Talk to your health care provider about any symptoms that occur with exertion.
  • Pace yourself and dial down physical or work activities that cause excessive fatigue.
  • Break daily activities up into smaller tasks throughout the day, as tolerated.
  • Practice deep breathing to help restore lung function compromised by COVID-19.
  • Incorporate breaks into daily work routines.

Seeking Treatment for Long COVID

Just how long does long-COVID last? Patients who experience long COVID may have symptoms for a year or more after their initial COVID-19 infection, according to a study of 156 participants, published in the January 2022 issue of the American Journal of Physical and Rehabilitation Medicine. These persistent symptoms can significantly affect patients’ cognition, their ability to work or participate in physical activity, their interactions with others and their overall quality of life. Nearly half of the study participants who had worked full-time before COVID-19 no longer did.

If you previously had even a mild COVID-19 infection but still don’t feel well, it’s better to address it early, Verduzco-Gutierrez emphasizes.

Most states have at least one post-COVID care clinic, often located at large teaching hospitals. You can find clinics nearest you through an online directory provided by Survivor Corps, an organization that helps people with long COVID.

However, some programs may be unable to immediately take on new patients. “It’s hard to get into some of those COVID-19 clinics,” Verduzco-Gutierrez notes, with waits that can be several weeks or months depending on the city and the clinic. “So, primary care doctors are seeing these patients as well. Hopefully, patients can get into their primary care sooner than later to get some initial advice.”

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SAN ANTONIO – New guidance by physical medicine experts shows cardiovascular symptoms associated with long COVID are widespread and could overwhelm the system if nothing is done.

Texas is the state with the second-highest number of long COVID cases, with more than 2 million.

That statistic is according to the American Academy of Physical Medicine and Rehabilitation (AAPM&R), which has already released consensus guidance on several long COVID symptoms, including fatiguebreathing discomfort, and cognitive symptoms.

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“Upwards of 30% of people who are infected with COVID will go on to develop long-term problems,” said AAPM&R President-Elect Dr. Steven Flanagan, who is also the Rehabilitation Medicine Department Chair at New York University Langone Health.

That 30% translates to upwards of 27 million Americans.

“These are people who can’t get back to work, can’t fulfill their roles as family members. It really impacts them and is a disability,” Flanagan said.

On Tuesday, the organization released new guidance on cardiovascular symptoms.

“We know that they’re common. Myocardial injury has been reported in more than 40% of individuals. Acute heart failure in a third of patients that have been hospitalized for COVID, heart rhythm disturbances persistent in up to 20% of individuals, and ongoing inflammation has been reported up to three months after infection, in up to 60%,” said Dr. Jonathan Whiteson, the lead author on the Cardiovascular Complications Guidance Statement.

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Dr. Whiteson is also the vice chair for Rusk Rehabilitation Clinical Operations and medical director of cardiac rehabilitation at New York University Langone Health.

He said the public and medical professionals must understand that this is not just happening to people who had a severe COVID-19 infection.

“We are seeing many people who had mild disease, were never hospitalized in the acute phase, developed cardiovascular disorders. Up to 4% of individuals who had mild disease have had a stroke or myocardial infarction in the post-acute stage,” Whiteson said.

Whiteson said the guidance statement on cardiovascular symptoms due to long COVID has three parts. He called the first part a wake-up call.

“A call to action for patients, for clinicians, health care providers, for health care systems, for insurance companies, for government agencies, for researchers. This is novel. We need to understand it. We need to get ahead of the game,” he said. “We cannot wait five years, 10 years to find out that these projections are absolutely spot on.”

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Those projections are that many people who have never had cardiovascular disease before will develop it. Whiteson said that includes younger generations.

“We’re not seeing it yet, but we’re projecting a much younger generation could have more significant cardiovascular disease because of COVID infection and long-haul disease,” he said.

That’s where the second part of the statement comes in: guidance for healthcare providers on how to spot and treat long COVID cardiovascular disorders.

“For physicians not to misconstrue or underestimate what these symptoms may be -- so taking a detailed history, recognizing the symptoms of potential cardiovascular disease, including chest pain, shortness of breath, dizziness, palpitations. They may represent cardiac disease, even in the absence of other cardiac risk factors,” Whiteson said.

The main recommendation in that section is to treat every patient individually, not strictly relying on timeframes set in stone.

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“An individual approach. We typically recommend activity for people with cardiovascular disease, but we have to be very cautious in individuals who have long COVID because they may have symptom exacerbation due to increasing activity and exercise,” Whiteson explained.

The last piece of the guidance statement addressed health care inequities for minorities and underserved communities.

“We know that in cardiovascular disease, there are already inequity issues with not only minorities’ access to care, but even with differences in sex for referral for rehabilitation of cardiac issues,” said guidance statement co-author Dr. Alba Azola.

Dr. Azola is also an assistant professor of Physical Medicine and Rehabilitation at Johns Hopkins Medicine and co-director of the Physical Medicine and Rehabilitation Post-Acute Covid Team Clinic.

She said the pandemic exacerbated these inequities, especially in immigrant populations.

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“After hospitalization, these patients do not have access to rehabilitative needs. They don’t have access to equipment that they need, putting them at higher risk of developing disabilities and accessing needed care in order to recover from long COVID and cardiovascular issues related to long COVID,” Azola said.

Dr. Flanagan said, “There’s a bill in Congress now to help fund clinics, particularly in those areas that are serving underserved populations.”

He’s hopeful it will pass but said money isn’t the only thing that will fix the problem.

Whiteson added that education is necessary. He said most people with cardiovascular issues need rehab, typically from doctors of physical medicine and rehabilitation.

However, those referrals, or lack thereof, are causing inequity.

“The rates of referral for cardiac rehab, in general, are very poor. Only 20% to 30% of all who qualify for and should be getting cardiac rehab are actually referred, through,” Whiteson said. “The lowest rates of referral are in older African American women.”

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He hopes spreading awareness will teach providers when they need to refer patients for cardiac rehab and encourage them to follow through.

“If they qualify for cardiac rehabilitation, if they have low pumping function of the heart or heart failure, if they’ve had a heart attack, then refer to the appropriate rehabilitation, which would be cardiac rehabilitation,” Whiteson explained.

Whiteston said providers who suspect something is off should run lab tests for blood counts, electrolytes, and other tests surrounding cardiac function and cardiac muscle damage.

“And undergoing the correct testing, which may include things like EKGs, ECHOs, looking at the chambers of the heart, stress tests, which look to see how the heart is at rest and then under physiological stress,” he added.

The recommendation to the public is to see a doctor when there’s any symptom that seems abnormal. They also maintain that lifestyle factors are important to not contribute to the problem. They suggest avoiding smoking, eating correctly, staying at the optimum weight, blood pressure control, blood cholesterol and blood sugar control, and exercising.

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Flanagan said their recommendations seem to be getting through to people, even at the highest levels.

“About a year ago, we published a call to action to the Biden Administration and the Congress to really address this public health concern. We wanted to make sure there were going to be resources for clinics that are going to be treating these patients, ensure that there was equal access across the board, as well as making sure there were resources for research,” Flanagan said.

He said the Biden administration responded positively with a memorandum on actions they plan to take or are already taking.

There are about 40 long COVID clinics in the nation dedicated solely to treating long-haul patients.

Two of those are in San Antonio -- one run by University Health and the other by UT Health San Antonio. KSAT has interviewed the clinic director, Dr. Monica Verduzco-Gutierrez, who said the need is immense.

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San Antonio clinics for patients with long COVID have months-long waitlists.

Her clinics have treated hundreds of patients, and University Health confirmed to KSAT on Wednesday that the waiting lists for the long COVID clinics are still between three and six months long.

“Nationally, we’re trying to get our legislators to pass types of bills that will support more long COVID clinics. There’s also only so many doctors we have that can treat this,” Verduzco-Gutierrez said.

She is one of the many practitioners working hand in hand with the AAPM&R to tend to patients worried about their prolonged and debilitating symptoms.

One of the public’s many questions is about how insurance companies are reacting to these needs.

“Insurance companies have been realizing that this is something new and have been supportive of a multidisciplinary approach, different physicians evaluating patients from different perspectives, developing a treatment plan,” Whiteson said.

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He said Medicare typically sets the tone, and the current tone is promising.

“Medicare has approved cardiac and pulmonary rehabilitation even outside of the typical qualifying diagnoses, and many of the private insurances usually follow suit,” Whiteson said.

This new cardiovascular symptom guidance is packed full of useful information, but in the big picture, it boils down to a simple yet strong warning: inaction now will likely lead to a health disaster down the line.

The AAPM&R is already working on more guidance reports for other long COVID effects on pediatrics, neurology, autonomic dysfunction, and mental health.

Copyright 2022 by KSAT - All rights reserved.

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Whether you're obviously deconditioned after a lengthy hospitalization or coping with more subtle effects of a seemingly 'mild' COVID case, it can be challenging. Experts weigh in on what COVID-19 recovery involves.

Recovery from COVID-19 can continue for many weeks or even months after the infection passes. Whether you’re obviously deconditioned after a lengthy hospitalization or coping with more subtle effects of a seemingly ‘mild’ case, it can be challenging.

Restoring muscle mass and strength, physical endurance, breathing capacity, mental clarity emotional well-being and daily energy levels are important for former hospital patients and COVID long-haulers alike. Below, experts weigh in on what COVID-19 recovery involves.

Comprehensive Recovery Plan

Individual recovery needs vary depending on the patient and their COVID-19 course. Major health areas that are frequently affected and must be addressed include:

Strength and mobility. Hospitalization and virus infection itself can erode muscle strength and mass. Immobility from bedrest in the hospital or at home can be gradually reversed.

Endurance. Fatigue is a huge problem with long COVID, requiring careful activity pacing.

Breathing. Lung effects from COVID pneumonia may persist. Medical treatments plus physical therapy can improve breathing.

Functional fitness. When activities of daily life like lifting household objects are no longer performed with ease, function can be restored.

Mental clarity/emotional equilibrium. So-called brain fog makes it hard to work or concentrate, and the effect is real, not imaginary. Going through a serious illness, prolonged hospitalization and persistent health problems is upsetting. Support from therapy helps.

General health. The pandemic too often overshadowed concerns such as cancer care, dental checkups or routine screenings, but overall health issues also require attention.

[See: Mind-Blowing Benefits of Exercise.]

Strength and Mobility

When the muscular-skeletal system takes a hit from COVID-19, it reverberates throughout the body. “Muscle plays a critical role,” says Suzette Pereira, a muscle health researcher with Abbott, a global health care company. “It accounts for roughly 40% of our body weight and is a metabolic organ that works other organs and tissues in the body. It provides nutrients to critical organs during times of illness, and losing too much can put your health at risk.”

Unfortunately, without intentional focus on muscle health, muscle strength and function can drastically deteriorate in COVID-19 patients. “It’s a Catch-22,” says Brianne Mooney, a physical therapist at the Hospital for Special Surgery in New York City. She explains that lack of movement significantly exacerbates muscle loss, while movement can feel impossible with the energy-draining disease. To make matters worse, muscle atrophy increases fatigue, making movement even less likely.

Patients can lose up to 30% of muscle mass in the first 10 days of intensive care unit admission, research shows. Patients hospitalized due to COVID-19 are usually in the hospital for at least two weeks, while those who go into the ICU spend about a month and a half there, says Dr. Sol M. Abreu-Sosa, a physical medicine and rehabilitation specialist who works with COVID-19 patients at Rush University Medical Center in Chicago.

[Read: Telemedicine Explodes to the Forefront Amid COVID-19.]

Maintaining Muscle Strength

Even in the best of conditions, for those experiencing strong COVID-19 symptoms, it’s likely that some muscle loss will occur. However, patients can greatly influence the degree of muscle loss and, in mild cases, may be able to maintain muscle health, says Mooney, a member of the team that created the Hospital for Special Surgery’s COVID-19 nutritional and physical rehabilitation guidelines.

These strategies can help protect muscle, strength and overall health during recovery:

— Move as you’re able.

— Add resistance.

— Prioritize nutrition.

Move as you’re able

“The sooner you move, the better,” Abreu-Sosa says, explaining that, in the hospital, the COVID-19 patients she works with have three hours of physical therapy five days per week. “Here in the hospital, we are starting exercise even on the day of admission if vitals are stable. Even in patients who are intubated, we work on passive raise of motion, raising their arms and legs and positioning muscles.”

Once home, Mooney recommends people get up and move every 45 minutes or so. Walking, performing acts of daily living like bathing and dressing as well as structured exercises such as cycling and squats are beneficial.

“Any physical activity should be based on symptoms and current levels of function,” she says, explaining that the goal is to engage the muscles of the body without exacerbating any symptoms. Fatigue, shortness of breath and dizziness are all cause to stop exercise.

Add resistance

When integrating movement into your recovery routine, prioritize resistance-based exercises that challenge your body’s largest muscle groups, Mooney recommends. She says that completing three 15-minute workouts per week is a great starting point, and patients can increase frequency and duration as recovery progresses.

Take special care to focus on the hips and thighs as well as back and shoulders, as these muscle groups tend to lose the most strength in COVID-19 patients and have wide-reaching effects on the ability to stand, walk and perform everyday tasks, Abreu-Sosa says.

To strengthen the lower body, try exercises such as squats, glute bridges and side steps. For the upper body, incorporate row and shoulder-press variations. Your body weight, light dumbbells and resistance bands all make great at-home resistance gear, Mooney says.

Prioritize nutrition

“Protein is needed to build, repair and maintain muscle, but also to support the production of antibodies and immune system cells,” Pereira says. Unfortunately, protein intake is often lower than it should be in COVID-19 patients. “Aim for 25 to 30 grams of protein at every meal if possible, by eating meats, eggs and beans or using an oral nutrition supplement,” she recommends.

Vitamin A, C, D and E and zinc are critical to immune function, but they also play a role in both muscle health and energy, Pereira says. She recommends incorporating milk, fatty fish, fruits and veggies and other plants like nuts, seeds and beans into your recovery diet. If you have trouble cooking for yourself at home, consider trying out healthy meal-delivery services to help you get a wide range of nutrients.

[READ: COVID-19 and Hearing Loss.]

Endurance

Pushing through fatigue and weakness can be counterproductive when you have long COVID. Respecting post-COVID fatigue is part of the path to recovery.

Excessive Fatigue

Fatigue is among the top symptoms that brings patients seeking physical therapy to the Johns Hopkins Post-Acute COVID-19 Team, says Jennifer Zanni, a cardiovascular and pulmonary clinical specialist at Johns Hopkins Rehabilitation at Timonium, in Maryland. “It’s not the type of fatigue necessarily that you’d see with someone who’s just become deconditioned or who has lost all this muscle strength,” she says. “It’s just symptoms that limit their ability to do their normal daily activities — their school or work activities.”

Pacing Yourself

A little too much activity can bring on disproportionate tiredness for people with post-COVID malaise. “Our treatment has to be very individualized to the patient, for example, if a patient presents and has what we term ‘post-exertional malaise,'” Zanni says. That, she explains, is when someone does a physical activity like exercise or even just a mental task like reading or being on a computer, and it causes fatigue or other symptoms to become much worse in the next 24 or 48 hours.

“If a patient has those types of symptoms, we have to be very careful about how we prescribe exercise, because you can actually make someone worse,” Zanni says. “So we may just be working on pacing and making sure they get through daily activities, like breaking things up into smaller tasks.”

What felt like a short, easy jaunt before COVID-19 can become a major stressor, patients may say. “It could be something small, like they walked a mile and can’t get out of bed for the next two days — so, way out of proportion to the activity,” Zanni says. “But it’s just like their available energy is very limited and if they exceed that it takes a long time to recover.”

Just as you do with money, spend your valuable energy wisely. By learning to pace yourself, you may prevent utter exhaustion from setting in.

Breathing

Respiratory complications like pneumonia can have long-term breathing effects. In addition, Abreu-Sosa notes that in the treatment of COVID-19, doctors sometimes use steroids with patients, as well as paralytic agents and nerve blocks in those requiring ventilators, all of which can speed muscle breakdown and weakness. In COVID-19 patients, this deterioration even includes the respiratory muscles that control inhalation and exhalation.

Breathing exercises are a standard part of recovery. A patient booklet created by Zanni and colleagues early in the pandemic outlines movement recovery phases. “Breathe deep” is the message in terms of breathing. Deep breathing restores lung function by using the diaphragm, the booklet notes, and encourages a restoration and relaxation mode in the nervous system.

Beginning phase. Practice deep breathing on your back and on your stomach. Humming or singing incorporate deep breathing, as well.

Building phase. While sitting and standing, consciously use deep breathing while placing your hands around the side of your stomach.

Being phase. Deep breathe while standing and throughout all activities.

Aerobic training, such as sessions on a treadmill or exercise bike, is part of a comprehensive approach to building breathing capacity, overall fitness and endurance.

As the pandemic wore on, it became clear that persistent lung problems can complicate long-term recovery plans. “I do have some patients with ongoing lung problems, just because having COVID has caused some damage in their lungs,” Zanni says. “That can be very slow to resolve or in some cases permanent. Some patients need oxygen for a period of time. It just sort of depends how severe their illness was and how well they recovered.”

Rehab for a patient whose lungs are compromised takes a multidisciplinary approach. “We’re working with the physicians from a medical standpoint to optimize their lung functions,” Zanni says. For instance, she says, that could mean patients are using inhaler medication to allow them to exercise. “We also exercise in ways that they can tolerate. So if someone is having more shortness of breath, we may begin exercise more with interval training, meaning short periods of exercise with little rest breaks.”

Functional Fitness

Performing everyday tasks you used to take for granted, like walking downstairs or lifting household objects, is part of functional fitness. So is having the energy and ability to do your job.

For many employees, traditional expectations of working intently for hours on end are no longer realistic as they continue to recover from COVID-19.

After the initial bout with COVID-19, returning to work can be surprisingly difficult. “For a lot of people, work is challenging,” Zanni says. “Even sitting at a computer may not be physically taxing, but it can be cognitively taxing, which can (cause) just as much fatigue sometimes.”

Functional training allows people to return to meaningful activities in their lives, not just by building strength but also by using their bodies more efficiently. Learning proper movement patterns and strengthening key muscle groups can help restore balance and agility, coordination, posture and power to participate in family gatherings, outdoor activities like hiking or work routines such as sitting and working on a computer.

However, it may be impossible for some employees to resume normal work duties as usual. “Some people aren’t able to work at all because of their symptoms,” she says. “Some people are having to adjust their work schedules or work from home. Some people don’t have the ability to not work — they’re working but almost every day they’re going through their available energy, which is a tougher scenario.” That can be a challenge for many people who don’t have the luxury of not working or at least taking a break when they need one, she notes.

Some long-COVID care providers may help educate patients’ employers, for instance sending letters to inform them about long COVID, so they can better understand potential health effects and be more accommodating when needed.

Mental/Emotional Equilibrium

A well-rounded team of health care providers will ensure that your recovery plan is individualized, comprehensive and holistic, incorporating physical and mental health. As part of that, Zanni notes that many patients who are seen at the Hopkins PACT clinic receive screening for psychological and cognitive issues.

In a rehab bonus, patients have the opportunity to realize they’re not alone. Otherwise, it can be discouraging when employers, friends or even family members question whether you’re really still weak, tired or mentally or emotionally struggling when you know that’s truly the case. Part of long COVID rehab is receiving support and belief.

“A lot of my patients would say just having someone validate what they’re experiencing is probably a big thing,” Zanni says. “Because a lot of symptoms are what people are telling you and not what a lab test is showing.”

Zanni and colleagues see patients both as outpatients at the clinic or through telehealth, which can make access easier. Increasingly, medical centers are offering post-COVID programs for those with lingering issues. Your primary care provider may be able to recommend a program in your area, or you can check with local medical centers.

General Health

It’s important to keep in mind that a new health problem or symptom may be caused by something other than COVID-19. Multidisciplinary communication is crucial when patients are evaluated for long-COVID rehab, Zanni says.

With physical or cognitive changes, functional issues or symptoms of fatigue, clinicians must rule out non-COVID possibilities. As always, cardiac, endocrine, oncology or other pulmonary conditions can cause a multitude of overlapping symptoms. All this speaks to having good access to medical care, Zanni says, and the need for a thorough evaluation rather than just saying: This is all long COVID.

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How to Regain Strength After COVID-19 originally appeared on usnews.com

Update 04/29/22: This story was previously published at an earlier date and has been updated with new information.

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