Add To Favorites

Suffering in Silence: Residents struggle with mysterious, overlooked chronic illness

Leader-Telegram - 10/13/2019

Oct. 13--MENOMONIE -- Deborah Smith's life revolves around her family. Spending the past 19 years in Menomonie, the outgoing Smith home-schooled her children, encouraged their interests and helped them become involved at their local church.

For the past several years, though, Smith has taken a less active role in her family members' lives due to a draining, mysterious biological disease. Smith suffers from myalgic encephalomyelitis chronic fatigue syndrome, an illness without a known cause or cure.

She has a debilitating form of ME/CFS that makes it nearly impossible to speak and confines Smith to her bed. She cannot stand on her own and has not left home in more than two years.

Smith, a 52-year-old married mother of four, is not alone. According to a 2015 report from the Institute of Medicine -- now called the National Academy of Medicine -- an estimated 836,000 to 2.5 million Americans suffer from ME/CFS.

The World Health Organization and U.S. Centers for Disease Control and Prevention have acknowledged the illness for decades, but patients like Smith have often felt ignored by the medical community.

Searching for answers

ME/CFS affects millions worldwide, but not much is known about it. The hallmark signs of the disease include at least one cognitive deficiency or physical impairment when standing upright; six months or more of malaise after exercise; and unrefreshing sleep. However, the severity of symptoms varies widely and can be difficult to measure, so it often takes years before patients know what they are facing.

ME/CFS can affect nearly all ages but is more common in middle-aged adults. As with most autoimmune diseases, more women than men have ME/CFS.

Its exact causes remain unknown. Some patients begin experiencing symptoms after an infection, but the disease may also occur following physical trauma. For some people, the symptoms begin rapidly, while it takes months for others. Due to the perplexing nature of the illness, proper treatment depends on the individual.

Smith has had the disease since 2011 and said symptoms began shortly after a tooth infection. She first received an official diagnosis in February 2013.

In the beginning stages, Smith met with more than a dozen doctors but said only a few understood her symptoms and were willing to help. Most encouraged her to exercise, but that made things worse and, according to Smith, led to her essentially being homebound for six years and counting.

A "crash," or setback, caused by overexertion last November worsened her maladies and caused Smith to nearly lose the ability to talk; her voice can only reach a faint whisper. (During an interview with the Leader-Telegram, caregiver Meg Erickson served as Smith's interpreter, reading her lips and relaying the responses).

Laura Prince, a local speech language pathologist, worked with Smith for about four months this year to improve her verbal communication skills. Prince had never aided an ME/CFS patient before and was initially skeptical about the extent of the disease, but that changed shortly after she met Smith.

Prince was struck by the severity of Smith's illness during their weekly sessions. Smith's condition has worsened since they started working together, so Prince shifted her focus toward obtaining an alternative communication device for Smith that can be activated via eyelash movement.

Jamey Tuttle is also helping Smith apply for the communication device. Tuttle, owner of Serenity Care Agency in Boyceville, began working with Smith in February and spends about 12 hours per week providing supportive home care like transferring Smith to the bathroom, giving her bed baths, cooking, cleaning and doing laundry.

Smith is the only ME/CFS patient Tuttle has assisted. Tuttle watched the documentary "Unrest" to gain a better sense of the disease, but she did not know exactly what to expect. Tuttle decided to work with Smith on a regular basis after talking with her in person and seeing the effects of the illness.

Smith told Tuttle the work would entail challenges, but Tuttle was still surprised by the disease's difficulties. On Smith's bad days, she has almost no energy and cannot support herself, making transfers extremely difficult and bed baths impossible.

When Smith is not ravaged by ME/CFS, Tuttle said she is personable and compassionate. On good days, Smith can communicate more easily and asks her caregivers about their experiences in the world -- something to which she no longer has direct access.

Costly challenges

Local awareness of the disease appears to be low. Tuttle said no one else she has talked to about ME/CFS knows much about it. Spokespeople for HSHS Sacred Heart Hospital and Mayo Clinic Health System in Eau Claire declined interview requests for this article because the organizations did not have an employee with requisite ME/CFS expertise. Marshfield Clinic did not respond to interview requests.

Federal underfunding presents a constant challenge as well. In 2014, spending toward ME/CFS research by the National Institutes of Health totaled around $5 per patient, compared with estimates of $255 per patient for multiple sclerosis, $283 for lupus and $2,482 for HIV/AIDS.

ME/CFS is also more costly than similar illnesses. The average annual medical expenses per individual were $30,860 from 2012 to 2016, according to a study published in Frontiers in Pediatrics that examined more than 14,000 ME/CFS patients. Over the same time span, average annual medical costs totaled $20,160 for lupus patients and $21,660 for multiple sclerosis patients.

Prince said a lack of education has led to funding difficulties for ME/CFS patients like Smith, who also hopes to eventually have a motorized wheelchair and bathroom lift.

"We know what would make her successful, but everything has a price," Prince said.

Through Medicaid coverage, Smith has had caregiver support full time since June. Before that her husband, Dennis Smith, and children shouldered the vast majority of caretaking responsibilities. Now, a rotating group of caregivers visits four times per day to transfer Smith from her bed to a wheelchair and then to a bathroom down the hall. That task can pose danger, though, as Smith said she has been accidentally dropped to the ground 11 times over the years during the transfer process.

Smith feels days pass by without her involvement. She has missed graduations and baptisms and no longer can take part in simple pleasures like nature walks or sipping a cup of chai tea.

Two of Smith's children live at home while attending college and take care of her while Dennis Smith works in the evenings. Lucas Smith recalled that his mother loved to draw before her illness. To keep the mood light, he sometimes startles her by waiting in her bedroom doorway while she's not looking, giving Smith a momentary surprise when she looks up.

Smith believes that if she had received a proper diagnosis initially, her condition would not be nearly as severe.

"We're not only fighting this disease, but we're also fighting the people that are supposed to be helping us," Smith said.

Spreading awareness

Smith's experiences are not unique. The 2015 IOM report stated that between 84 and 91% of ME/CFS patients have not received a proper diagnosis.

Dr. Susan Levine, an ME/CFS clinician and researcher who began working with ME/CFS patients in 1987, contributed to the 2015 IOM report. Levine is based in New York and formerly served as chair of the Federal Chronic Fatigue Syndrome Advisory Committee.

Levine said an "explosion of research" on the disease has occurred in the past decade, but the pace of new clinicians specializing in ME/CFS has likely decreased due to retirements and a dearth of widespread training. She said the most significant impediments to ME/CFS progress involve the lack of awareness about the illness and the absence of tangible biological markers or blood tests to indicate a person has the disease.

It is uncertain if or how much ME/CFS lowers the life expectancy of the average patient, but people with the disease have an above average rate of death by suicide, according to Dr. Elizabeth Unger, chief of the CDC Chronic Viral Diseases Branch.

Unger said some physicians have apathy toward ME/CFS patients due to lack of understanding. To improve that, the CDC has created educational programs and aims to have ME/CFS included in more medical college textbooks.

"You have to break through that stigma," said Unger, who has researched ME/CFS since 1997.

Emily Taylor, director of advocacy and community relations for the Solve ME/CFS Initiative, agreed.

"Doctors hate saying, 'I don't know,'" Taylor said.

"Perfect storm"

Solve ME is a national organization, so Taylor often travels to Washington and meets lawmakers to advocate for better ME/CFS policies. The illness has started to receive more attention in Congress, and Taylor feels optimistic about potential funding. She said ideal practices include an increase in federal spending, comprehensive disease tracking and a nationwide education program for medical professionals.

Taylor called it "a perfect storm of misunderstanding" regarding the reluctance of the medical community and general public to widely recognize the disease.

She said the combination of factors include ME/CFS predominantly affecting women, whose pain is sometimes seen as less real; the lack of objective data illustrating the disease's impact; and the rarity of physical signs, such as hair loss with cancer.

"People with this illness, you don't see them suffer," Taylor said. "When they're sick, they just disappear."

Smith, confined to her room in a home off a rural road, said she feels invisible to society.

Battling to survive

Eau Claire resident Scott Schneider feels similarly forgotten. His struggles with ME/CFS began in September 2015 after a bout of mononucleosis. Schneider has a severe form of the illness that makes it nearly impossible to hold a job, perform basic tasks and leaves him exhausted unless he receives at least 12 hours of sleep per night. He has trouble driving more than 30 minutes.

Schneider gradually became weaker while trying to identify his disease over 2 1/2 years and said he did not anticipate the lack of understanding from medical professionals. To make matters worse, there are no medications approved by the Food and Drug Administration to treat ME/CFS, so physicians and patients must make educated guesses about prescriptions that could help.

Schneider takes pain medication that allows him to function and sleep better, but the physical agony never ceases.

Taylor, whose mother has ME/CFS, said the seemingly never-ending search for a diagnosis is fairly common, noting that it takes two to four years on average to receive a correct assessment.

"It's symptom whack-a-mole," Taylor said. "A symptom would pop up, and it's like, 'Is this a reaction to the medication? Is this a side effect to the medication? Is this a new thing that's coming out of this disease we haven't seen before?'"

Schneider first received an official diagnosis in February 2018. By that point, he had scaled back his work hours from full time to part time, and he took a three-month medical leave at one point because of the illness. Schneider felt misunderstood by employers and co-workers, sometimes going through crying spells on the job.

Recently, Schneider has been unable to maintain stable employment as a result of his physical condition that left him exhausted after two or three hours of office labor and barely able to carry groceries.

Schneider has not worked since May and is in an ongoing civil suit with a former employer for wrongful termination after being fired last year for what the employer deemed harassment. Schneider disputes that claim, saying he lost the job because of his physical disability. The employer could not be reached for comment.

Schneider's struggle to hold a job is fairly common. A recent study published in BMC Public Health examined 1,086 adults with ME/CFS and found that about 59% of them were unemployed.

His Social Security disability insurance application was denied, as was his attempt to receive state unemployment funding, both of which Schneider is appealing.

Taylor said lack of adequate insurance coverage is not unique to Schneider.

"If you're one of those lucky folks who get a diagnosis and you have a doctor who's willing to work with you -- those are two huge, mountain-sized hurdles to jump -- even when you get to that category, nothing you try is covered by your medical insurance provider and you're paying out of pocket," Taylor said.

Schneider's circumstances recently have become more dire. With no income, he could not afford rent and moved his belongings into his car last month. Schneider stayed at a local homeless shelter for a few nights before leaving as a result of inadequate accommodations for his ME/CFS and pre-existing sleep apnea.

Schneider currently lives out of his rusted vehicle. He occupies his days in libraries sending emails and listening to artists like Phil Collins and Pink Floyd while conserving as much energy as possible. He misses simple activities like grilling brats or watching a thunderstorm on a summer night.

Over the past four years, Schneider has been driven by his search for solutions.

"I'm now using my mind in this situation to get myself to the right place, the place that I want to be," Schneider said. "I think that's what motivates me, is to get myself out of this situation with every single possible fiber of my being and get myself to the place that's going to be physically and emotionally best for me ... I just believe there's so much that I am capable of, and I've been capable of, but I just haven't been able to get to it yet."

For now, the 45-year-old Schneider is forced to scrape by while his illness worsens. Unstable living conditions lead to poor sleep, which exacerbates his sleep apnea and weakens his immune system.

"Every day is torture," Schneider said. "I feel like a wounded animal pushed to the edge of a cliff, like a boxer being pummeled on the ropes, trying to protect myself from the blows, waiting for the right time to get up and stagger back. I've never felt so alone in my life. I know this isn't a place where I should be."

As Schneider's body weakens and his shame grows, it becomes more difficult to keep his spirits up. He fears what will happen if he remains homeless when winter arrives.

"I put my energies into surviving and trying to keep myself afloat because if I don't do that, then nobody else is," Schneider said. "I feel like I'm living in an alternate universe. The world has pushed me to the point that it has made my illness worse because it does not want to help me. I don't need prayer; I need action. I just wish somebody would give me a damn break."

Connecting through struggle

Through online communities of people with ME/CFS, Smith and Schneider have found allies such as Lisa Alioto, co-founder and vice president of the Minnesota ME/CFS Alliance.

Alioto has dealt with a mild form of the disease for about four years. She searched for over a year until receiving a diagnosis and had similarly frustrating experiences with physicians.

"They either did nothing or they made things worse," Alioto said.

Before the disease, Alioto worked full time as an attorney and maintained an active lifestyle that included climbing Mount Kilimanjaro in 2008. After ME/CFS, she wanted to exercise but realized it was counterproductive. If Alioto had physically exerted herself, she believes there is a good chance she would be homebound or bedbound.

Exercise seems to have made matters worse for Smith, Schneider and Alioto. However, Levine said a few minutes of physical activity have helped some of her patients, illustrating that treatment depends on the individual and disease severity.

Today, Alioto works part time and is coming to grips with her new life. She possesses a naturally positive disposition, but the disease presents significant challenges. A simple task like vacuuming is a nearly insurmountable obstacles.

When driving by a fitness center, Alioto feels the urge to go in and work out but knows she cannot. She hasn't taken a vacation in four years because travel exhausts her and driving more than half an hour is too strenuous.

When considering a potential outing or social activity, Alioto must account for the day before and after the proposed date to ensure she doesn't crash.

Smith, too, retains a largely positive attitude and said her faith has helped her through the years. Smith tries not to dwell on the limitations of the disease. Rather, she looks for joy in everyday situations like a conversation with her daughter or enjoying her husband's tacos for dinner.

Still, Smith yearns to be a more active part of her family. She hopes to visit a son stationed with the Air Force in Italy. Another son is a pastor in Iowa, and she wants to see him preach one day.

Travel appears highly unlikely, however. The last time Smith rode in a car, it resulted in hospitalization for 10 days and paralysis for 24 hours. Smith and her family believe if she rides in a car again, the end result could be fatal.

Alioto views her overarching purpose as helping others in similar situations, although she said striking a proper balance between advocacy and rest is a challenge.

Likewise, Smith and Schneider's main goal is to raise awareness of the disease so other people will not endure their degree of suffering.

"We need people who can help us and walk alongside us," Smith said.

___

(c)2019 the Leader-Telegram (Eau Claire, Wis.)

Visit the Leader-Telegram (Eau Claire, Wis.) at www.leadertelegram.com

Distributed by Tribune Content Agency, LLC.