Tag: support groups

Support groups for alcohol use disorder are more effective when they are attended in person

Much of life went virtual during the COVID-19 pandemic — work, school and even some doctor’s appointments. So did many support groups for people with alcohol use disorder.

But people who attended Alcoholic Anonymous, SMART Recovery, Women for Sobriety and other mutual-help groups in person were “significantly” more likely to maintain sobriety than people who participated in these groups only online, a recent study shows.

MORE: Nurse who beat hard-to-treat cancer says she stayed strong by thinking of herself as a ‘survivor’

“Online meetings are convenient and widely available, so they could theoretically support many people who face barriers to in-person attendance, such as young people and rural populations,” Sarah Zemore, the study’s principal investigator, said in a statement. “Unfortunately, attending online meetings exclusively was associated with poorer outcomes.”

The study, led by researchers at Stanford University and the Alcohol Research Group, used data from more than 1,000 adults who took part in a previous study conducted between 2015 and 2021. It found that people who only attended mutual-help groups online were about half as likely to report that they had maintained their sobriety. At a three-month follow-up, people who attended only online were three times more likely to report problems with alcohol.

People who attended groups in person and online were as likely to maintain abstinence as people who only went to meetings in person.

One of the reasons why people attending only online may have had worse outcomes may have been because they reported lower participation levels in the meetings, researchers said.

Nearly 28 million people in the United States have alcohol use disorder. They have trouble stopping or controlling their consumption of alcohol despite adverse effects on relationships, careers and overall health.

Two years ago, the World Health Organization declared that no level of drinking is safe – not even moderate drinking. In January, former U.S. Surgeon General Vivek Murthy issued an advisory about alcohol consumption increasing the risk for seven types of cancer. He called for warning labels on alcohol about its carcinogenic risk.

Several medications are available to treat alcohol use disorder, including naltrexone, which helps decrease cravings and reduce the amount of alcohol consumed during drinking episodes. Therapy and group supports are also important parts of a full recovery program for alcohol use disorder.

Courtenay Harris Bond

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November 18, 2025
Build Your Ulcerative Colitis Support System

Ulcerative Colitis: Securing Support When You Need It Most

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January 2, 2024
America’s Concussion Problem Is Way Bigger Than Sports

The months of haze began in an instant, when the horse I was riding stumbled at the exact moment I was shifting my seat. I don’t remember falling, though I do remember the feeling of the leather reins moving through my hand. I hit my thigh on the ground. Then the flat of my back hit the wall of the indoor arena so hard it felt like I’d popped every vertebrae in my spine. After a few minutes, I got back on the horse (everyone always asks if I got back on the horse), but I haven’t ridden since.

Only on the way home did my thoughts begin to feel sluggish, like a fog was rolling across my brain. I heard ringing in my ears when I tried to think. Everything became too bright and too loud. I slept 17 to 20 hours each of the next three days. I woke up, ate, used the bathroom, and then wandered back to bed, exhausted.

I suspected I had a concussion as soon as the brain fog began. Just the week before, I had heard on a podcast that people could get one without hitting their head. The day after the accident, my doctor confirmed my suspicion. The force of my back against the wall had given me whiplash, my neck jerking forward and back after the collision. My brain, jostling around in my skull, had been injured too.

In my mind, the dangers of concussions were most acute for people who got too many of them—football players, boxers, military veterans, and others who underwent repeated trauma to the brain and had chronic traumatic encephalopathy. A single bump on the head? That was no big deal—except when it was.

For months, a five-minute phone call made me exhausted, as though I’d been swimming laps for an hour. I couldn’t drive, and even as a passenger, looking out the window made me nauseous. Observing anything felt like work; my eyes skipped, as though the world was a slowed-down film reel. My real work—the writing I got paid to do—was impossible. Fun, too, was out of the question. Trying to retrieve thoughts felt like rummaging through one empty file cabinet after another. My self, that person who exists in the wiring in my brain, had gone missing. I worried that she might be gone for good.

During that time, I started to rage against a system that leaves people suffering from concussions or “mild traumatic brain injuries” wading through bad or outdated advice. Studies keep showing that getting targeted rehabilitation for concussion symptoms can lead to a faster recovery, but that’s not what the average patient hears. Many people are still being told by doctors to simply wait a concussion out, when early treatment can make a big difference.

My doctor told me to rest—that most concussion symptoms resolve within a few days. Three days later, the doctor said not to worry until it had been seven to 10 days. Later she updated that range to a month.

When I was awake, I ate and used the little mental energy I had to search for information about concussions online and send emails to specialists. I wanted to know what was actually happening in my brain and if I could do anything to speed the recovery process along. I learned that a helmet can’t completely protect against a concussion because simply accelerating and decelerating quickly can exert enough force on the brain to injure it.

Then I took a nap.

I learned that researchers were working on blood tests that could detect a concussion by measuring protein fragments from damaged nerve fibers. (The first commercial product got FDA approval in March.) Douglas Smith, the director of the Center for Brain Injury and Repair at the University of Pennsylvania, describes these nerve fibers as the electrical grid for the city that is the brain. “Having a concussion is like having a brownout,” he told me. The brain’s connections aren’t gone, “but the signals aren’t going through.” And long-term symptoms after a single concussion aren’t uncommon. They happen to roughly 20 percent of concussion patients, Smith said.

I rested again.

I read books about concussions, a few chapters at a time. Most described people being told that, because their CT scan showed nothing, nothing could be done for them. (Concussions rarely show up on imaging.) Or they described people being discharged from hospitals while their brains felt so broken, they could hardly speak. Conor Gormally, the executive director of Concussion Alliance, told me that he believes concussions are treatable injuries that just aren’t being treated by the average medical professional. “The biggest problem people face are barriers to the care that they need, which is out there,” he said.

I closed my eyes in the dark room.

Every time I would spend a little while awake and active, a sensation of pressure would build up behind my ears, in a way that made me feel like my brain was swelling. I’d always been able to push through feeling tired and keep working. Now I couldn’t. When I reached my limit, I’d hear buzzing, as though a bug was stuck inside my eardrums.

I rested again.

This went on for weeks. I started looking up treatments for concussions in my area and found page after page of listings for chiropractors or special centers that didn’t always take insurance but promised that they’d be able to fix my brain. I joined support groups on Facebook where patients shared what had and hadn’t worked for them. Sometimes the posts were hopeful—people got better—but many of the people who remained in the groups did so because years had gone by and they still had problems. What if I never recovered?

After five weeks with no answers, I started sobbing in the middle of the day. I’m a journalist who believes in evidence-based medicine, yet I found so few resources that I started looking into alternative therapy. At a particularly low point, I went to see a doctor whose website looked like it hadn’t been updated since the early 2000s. Over the phone, he’d made multiple mentions of “clean eating” and similar things that gave me pause. I ignored my misgivings because he’d also all but promised he could make me better. I wanted so badly to be myself again. He sold tablets that promised to fight 5G radiation at the front desk. I considered walking away then but didn’t. His alternative treatments, which included wearing tinted glasses and a blanket that blocked electric radiation, didn’t help. They did cost $500.

I went back to bed.

No one really knows how many people get mild traumatic brain injuries every year. Emergency- room data don’t capture everybody, Elizabeth Sandel, a brain-injury-medicine specialist and the author of Shaken Brain, told me, because “a lot of people just go to their primary-care doctor.” The statistic of 3.8 million Americans a year gets bandied about, sometimes linked to mild head injuries from sports and other times to brain injuries of all kinds. Falls, recreational activities, car crashes, and domestic violence all can cause head trauma.

One of the reasons a concussion is so hard to treat is that every brain injury is a little bit different. There are more than 30 concussion symptoms, Smith told me: Some people get severe headaches; others have troubles with cognition, balance, vision, and so on. The treatment might be different for each of these symptoms.

Until recently, Sandel said, doctors often recommended that people with a brain injury spend the first days “cocooning,” or resting in a dark room. Now experts better understand that, for some patients, resting may be beneficial, but for others activities that don’t overly exacerbate symptoms might speed healing. The latest guidelines for concussion recovery, which came out in October 2022, continue to shift toward suggesting better rehab, sooner. If dizziness, neck pain, or headaches persist after 10 days, the guidelines now recommend “cervicovestibular rehabilitation”—exactly the kind of therapy that ultimately helped me recover. It’s a combination of manual therapy on key muscles and rehab for the vestibular, or balance, system. Multiple studies have shown the benefits of this type of rehab, including a 2014 study that found that 73 percent of treated patients recovered after eight weeks, compared with 7 percent in the control group.

By the time I got an appointment at a multidisciplinary brain-injury-rehab center near where I lived, more than two months had passed. After a lot of phone calls with my eyes closed—I could focus longer if I limited external stimulation—I found a vestibular therapist. This kind of therapy focuses on restoring the balance system through a combination of physical and eye exercises. My eyes not working in tandem was a classic sign that this area needed rehab.

The therapist gave me exercises where I tracked my finger with my eyes to help them get back in sync. At my first appointment with him, I could hardly stand on one leg with my eyes open without falling over. After practicing the balance exercises he gave me for a few weeks, I could once again stand on one leg with my eyes closed.

Manual physiotherapy, especially for the back and neck, can help restabilize and strengthen muscles after an accident. For me, this meant targeted physical therapy, strengthening exercises, and visits to a specialized chiropractor who used X-rays and gentle adjustments to put my neck back where it belonged.

Some of the things I’d found through trial and error, like using a stationary bike for an hour each day, the brain-rehab center would have been recommended for me anyway. But long waitlists to get into places like that aren’t uncommon—and having the right doctors made a significant difference.

Soon I noticed my stamina increasing every day. The neighbor’s dog didn’t seem so loud anymore. I could drive for 20 minutes, and then a full hour. I could even talk on the phone with friends and family whom I hadn’t been able to connect with for months. I read or went outside and did not need to nap. I wasn’t recovered but, finally, I was recovering.

After three months, I began taking some writing assignments again. I’d been struggling to hold more than one thought in my head at a time, but now it was like my brain had rebooted. I was again the person I remembered.

Six months after falling off the horse, my final, lingering symptom—the feeling of pressure in my head when I’d been working for too long—went away. I recovered but was left wondering why it had taken so much time for me to be routed to the care that I needed. I’ll never know if I would have gotten better without it, but I suspect recovery would have, at the very least, taken much longer. Why had I—a patient with a brain injury—been the one sifting through scientific papers and online support groups rather than getting these referrals from my doctor? In our American health-care system, many patients are expected to be their own advocates, but in this case, when a better, clearer path to recovery is so well established, it seems like that should have been unnecessary.

I often think wistfully about returning to riding, but then think again of that one moment when I slipped from the saddle and the months it took to recover. We brush off the dangers of a single concussion, but sometimes one fall or bad knock to the head is all it takes to turn your life upside down.

Tove Danovich

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October 6, 2023
Long-Haulers Are Trying to Define Themselves

Imagine you need to send a letter. The mailbox is only two blocks away, but the task feels insurmountable. Air hunger seizes you whenever you walk, you’re plagued by dizziness and headaches, and anyway, you keep blanking on your zip code for the return address. So you sit in the kitchen, disheartened by the letter you can’t send, the deadlines you’ve missed, the commitments you’ve canceled. Months have passed since you got COVID. Weren’t you supposed to feel better by now?

Long COVID is a diverse and confusing condition, a new disease with an unclear prognosis, often-fluctuating symptoms, and a definition people still can’t agree on. And in many cases, it is disabling. In a recent survey, 1.6 percent of American adults said post-COVID symptoms limit their daily activities “a lot.” That degree of upheaval aligns with the Americans With Disabilities Act’s definition of disability: “a physical or mental impairment that substantially limits one or more major life activities.”

But for many people experiencing long COVID who were able-bodied before, describing themselves as “disabled” is proving to be a complicated decision. This country is not kind to disabled people: American culture and institutions tend to operate on the belief that a person’s worth derives from their productivity and physical or cognitive abilities. That ableism was particularly stark in the early months of the pandemic, when some states explicitly de-prioritized certain groups of disabled people for ventilators. Despite the passage of the ADA in 1990, disabled people still confront barriers accessing things such as jobs and health care, and even a meal with friends at a restaurant. Most of our cultural narratives cast disability as either a tribulation to overcome or a tragedy.

Consequently, incorporating disability into your identity can require a lot of reflection. Lizzie Jones, who finished her doctoral research in disability studies last year and now works for an educational consultancy, suffered a 30-foot fall that shattered half of her body a week before her college graduation. She told me that her accident prompted “radical identity shifts” as she transitioned from trying to get the life she’d imagined back on track to envisioning a new one.

These are the sorts of mindset changes that Ibrahim Rashid struggled with after contracting COVID in November 2020, when he was a graduate student. He dealt with debilitating symptoms for months, but even after applying for disability accommodations to finish his degree, he “was so scared of that word,” he told me. Rashid was afraid of people treating him differently and of losing his internship offer. Most terrifying, calling himself disabled felt like an admission that his long COVID wasn’t going to suddenly resolve.

Jennifer Senior: What not to ask me about my long COVID

Aaron Teasdale, an outdoors and travel writer and a mountaineer, has also been wrestling with identity questions since he got COVID in January 2022. For months, he spent most of his time in a remote-controlled bed, gazing out the window at the Montana forests he once skied. Although his fatigue is now slowly improving, he had to take Ritalin to speak with me. He was still figuring out what being disabled meant to him, whether it simply described his current condition or reflected some new, deeper part of himself—a reckoning made more difficult by the unknowability of his prognosis. “Maybe I just need more time before I say I’m a disabled person,“ he said. “When you have your greatest passions completely taken away from you, it does leave you questioning, Well, who am I?”

Long COVID can wax and wane, leaving people scrambling to adapt. It doesn’t mesh with the stereotype of disability as static, visible, and binary—the wheelchair user cast in opposition to the pedestrian. Nor does the fact that long COVID is often imperceptible in casual interactions, which forces long-haulers to contend with disclosure and the possibility of passing as able-bodied. One such long-hauler is Julia Moore Vogel, a program director at Scripps Research, who initially hesitated at the idea of getting a disabled-parking permit. “My first thought was, I’m not disabled, because I can walk,” she told me. But if she did walk, she’d be drained for days. Taking her daughter to the zoo or the beach was out of the question.

Once she got over her apprehension, identifying as disabled ended up feeling empowering. Getting that permit was “one of the best things I’ve done for myself,” Vogel told me. She could drive her kid to the playground, park nearby, and then sit and watch her play. After plenty of therapy and conversations with other disabled people, Rashid, too, came to embrace disability as part of his identity, so much so that he now speaks and writes about chronic illness.

Read: The future of long COVID

Usually, the community around a disease—including advocacy among those it disables—arises after scientists name it. Long COVID upended that order, because the term first spread through hashtags and support groups in 2020. Instead of doctors informing patients of whether their symptoms fit a certain illness, patients were telling doctors what symptoms their illness entailed. And there were a lot of symptoms: everything from life-altering neurocognitive problems and dizziness to a mild, persistent cough.

As long-COVID networks blossomed online, members began seeking support from wider disability-rights communities, and contributing fresh energy and resources to those groups. People who’d fought similar battles for decades sometimes bristled at the greater political capital afforded to long-haulers, whose advocacy didn’t universally extend to other disabled people; for the most part, though, long-haulers were welcomed.

Tapping into conversations among disabled people “has shown me that I’m simply not alone,” Eris Eady, a writer and an artist who works for Planned Parenthood, told me. Eady, who is queer and Black, found that long COVID interplayed with struggles they already faced on account of their identity. So they sought advice from disabled Black women about interdependence, mutual aid, and accessibility, as well as about being dismissed by doctors, an experience more prevalent among women and people of color.

Disabled communities have years of experience supporting people through identity changes. The writer and disability-justice organizer Leah Lakshmi Piepzna-Samarasinha told me that when she was newly disabled, she was dogged with heavy questions: Am I going to be able to make a living? Am I datable? Her isolation and fear dissipated only when she met other young disabled people, who taught her how to be creative in “hacking the world.”

For long-haulers navigating these transitions for the first time, the process can be rocky. Rachel Robles, a contributor to The Long COVID Survival Guide, told me she spent her early months with long COVID “waking up every day and thinking, Okay, is this the day it’s left my body?” Conceiving of herself as disabled didn’t take away her long COVID. She didn’t stop seeing doctors and trying treatments. But thinking about accessibility did inspire her to return to gymnastics, which she’d quit decades earlier because of a heart condition. If she couldn’t lift her hands over her head sometimes, and if a dive roll would never be in her future, then so be it: Gymnastics could be about enjoying what her body could do, not yearning for what it couldn’t. Before she identified as disabled, returning to gymnastics “was something I would have never, ever imagined,” Robles said. And she never would have done it had she remained focused only on when she might recover.

Read: Long COVID is being erased—again

Hoping for improvement is a natural response to illness, especially one with a trajectory as uncertain as long COVID’s. But focusing exclusively on relinquished past identities or unrealized future ones can dampen our curiosity about the present. A better way to think about it is “What are the things you can do with the body that you have, and what are the things you might not know you can do yet?” Piepzna-Samarasinha said. “Who am I right now?”

Lindsay Ryan

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April 28, 2023
How to Find Support and Community for Advanced Breast Cancer

When Sandy Cassanelli of Glastonbury, CT, was diagnosed with stage IV breast cancer 8 years ago, her first phone call was to the one person she knew would understand: a close friend who also had metastatic breast cancer.

“She answered all of my questions and gave me hope,” says Cassanelli, who’s now 47. “She was the only woman I knew who had metastatic disease. If I hadn’t reached out to her right away, I would have gone onto the internet and read all sorts of statistics predicting I wouldn’t make it through the next 5 years. But she told me right away not to do that. She said, ‘don’t view it as a death sentence.’”

Cassanelli is busy today raising her two daughters and running the Breast Friends Fund, a nonprofit charity where 100% of funds raised go directly to metastatic breast cancer research. One reason why she thinks she’s survived — and thrived — is all the social support she’s had over the years.

“I’ve made so many connections over the years with truly amazing women,” she says. “While sadly, I think I’ve lost more friends than I’ve made, their journeys have also given me strength to carry on.”

Overall research suggests that those with more social support may have better quality of life after breast cancer treatment. But it’s less clear how social support affects survival. One study looked at more than 2,800 women diagnosed with breast cancer. Those who reported that they felt socially isolated were twice as likely to die from the disease as those with stronger social networks. One reason is because they may not have had the benefit of caregiving from friends, relatives, and even children. But experts also say that connecting with others is an important form of self-care.

“A diagnosis of metastatic breast cancer is forever: there’s no magic cure and it means a lifetime of scans every 3 to 6 months,” says Jean Sachs, chief executive officer of the nonprofit organization Living Beyond Breast Cancer. “Many women resist a community at the beginning because they are so focused on treatment. But they need the social support of others, particularly other women who have gone through similar experiences, so that they can become their own effective health advocates.”

Connecting With People Who Get It

Your health care team will offer medical advice, and your family and friends will offer caretaking and emotional support. But people with metastatic breast cancer say that connecting with women who have had a shared experience is key.

“There is no better support than the support of someone living with the same life-threatening illness that you live with,” says Tami Bowling, 49, a metastatic breast cancer survivor who lives in Scotch Plains, NJ. “They understand the severity of the diagnosis. They get the heartache you feel about mourning the life that you thought you would have, but they also share the same desire to make the most of every day. There’s a special connection there that you won’t find with anyone else.”

Natalie Hyman, 46, a metastatic breast cancer survivor who lives in Kailua, HI, agrees. “When you are given a terminal diagnosis, it brings up a lot of emotions that you may not be comfortable sharing with close family and friends,” she explains. “It feels liberating to speak to other women who understand. It’s also very helpful to share our stories about the different treatments we’ve tried, and our experiences with physicians. Knowledge is power. The more we share with each other, the more we feel the confidence to advocate for ourselves.”

Getting this social support early — within days or even hours of a diagnosis — is critical, says Abbey Kaler, a nurse navigator at the Advanced Breast Cancer Clinic at MD Anderson Cancer Center in Houston, TX. “It’s life changing to know you have metastatic breast cancer, so (people) need to be able to understand what that means, not just for themselves, but for their immediate family,” she says. “The presence of social support is pivotal in terms of being able to process this diagnosis.”

It may also help you make life-lasting memories. Soon after her diagnosis, Cassanelli remembers participating in a fashion show with others to raise money for breast cancer research.

“The first time I met (them) was the day before the fashion show. We spent the next 48 hours together, and really bonded. It felt so empowering walking down the runway with other women who were also fighting the same disease. There were ten of us originally, and now we are down to three. But we all keep in touch,” says Cassanelli.

How to Find Your Breast Cancer Community

Ask around. Kaler says the first step is identifying a medical provider you feel comfortable talking to. “It can be anyone on your health care team: a doctor, a nurse, a social worker, or a nurse navigator,” she says. Then ask them for resources to help. The cancer center where you are being treated may have a formal support group for those with metastatic breast cancer, or they may be able to connect you with someone in the area.

You can also reach out to organizations such as the American Cancer Society, Living Beyond Breast Cancer, CancerCare, or METAvivor. Many of these groups also have social media pages on platforms such as Facebook or Instagram where you can connect with others. In October 2022, Bowling herself organized #LightUpMBC, a global campaign that benefits METAvivor to shine a light and raise funds for metastatic breast cancer research.

“It was so inspiring to connect with women around the world with the common goal to educate and raise funds for research,” she says. “There’s a fearlessness and a passion among all of us who live with metastatic breast cancer, and a recognition that we are all united in fighting for our lives.”

Attend breast cancer conferences. Most now offer online options where you can join virtually, listen to speakers, and connect with other metastatic breast cancer survivors. Hyman has found many members of her tribe this way.

“Living Beyond Breast Cancer has a wonderful online conference that I’ve attended the last couple of years,” she says. “I’ve not only met women from all over the country, but I’ve met women who live near me that I’d never have crossed paths with otherwise.” Last year, Hyman connected with another survivor who happens to live in her condo complex. “I introduced her to our local metastatic breast cancer support group that she hadn’t yet connected with,” she recalls.

Lean on family and friends as needed. Even though they may not be able to understand exactly what you’re going through, they are there to support you.

“My rock throughout this has been my younger sister, Alli, who has come with me to every single cancer scan over the years,” says Bowling. “Since we have to go into New York City, we make it as pleasant as we can: we have dinner the night before at a nice restaurant, stay the night at a friend’s apartment, and then the whole next day we’re at the hospital doing blood work and bone scans.”

Pay it forward. Sometimes, when you are grappling with metastatic breast cancer, it’s all you can do to take care of yourself. But during those times that you’re up for it, reach out to other people with metastatic breast cancer, too. “One of the most important things you can do to give back is simply to share your story with others,” says Bowling. “It’s cathartic for you, and it gives other women hope and also the realization that they’re not alone.”

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March 10, 2023
Inoperable Lung Cancer: Making Treatment Work for You

By Larry Gershon, as told to Stephanie Watson

I was diagnosed with lung cancer by accident. In 2013, I went to urgent care with cold and asthma symptoms. When the doctor took an X-ray to make sure I didn’t have pneumonia, it showed a spot on my lung. After more scans, a surgical biopsy, and a brain MRI, I was diagnosed with stage IV lung cancer.

I was in total disbelief. Then my oncologist said something that really uplifted me. She told me that even though my cancer wasn’t curable, people can live long and active lives while dealing with chronic illnesses. That would be our plan.

There are new targeted therapies being approved every year to treat late-stage lung cancer. While most of these treatments have side effects, they are usually controllable and many patients can enjoy good results and lead pretty normal lives.

Get Tested

Hearing that you have inoperable lung cancer is tough. But hearing that nothing can be done to treat you is almost always untrue.

It’s vitally important for every patient who is diagnosed with inoperable lung cancer to get comprehensive genomic testing. These tests tell your oncologist the best treatment option for you to have success.

My genomic test found an EGFR mutation that causes my cancer to grow and progress. Once chemotherapy stopped working, I switched to a drug that targeted the EGFR mutation. I’ve been on the same targeted therapy for 5 years.

Educate Yourself

People who are educated about their disease and actively involved in their treatment do better because they are able to understand what’s going on. I think education is a huge part of dealing with a disease like lung cancer. Not knowing what to expect can lead to a lot more anxiety and stress.

Google is not your best source for information.Learn about lung cancer from your doctor, a support group, or an organization like the Go₂ Lung Cancer Foundation. There are also patient-founded lung cancer advocacy groups that support patients with specific genomic mutations. For example, there’s a group called the EGFR Resisters for the EGFR mutation I have.

Other mutation types have their own support groups. These groups are in contact with the pharmaceutical companies and the doctors who are doing research to develop new treatments for each specific mutation.

Care for Yourself

Over the years, I’ve learned that people with late-stage lung cancer who get palliative care early have better results and tend to live longer.

I volunteer with the GO₂ Foundation’s Phone Buddy Program, where I help other lung cancer patients understand the treatment experience. One of the biggest misconceptions I hear is that palliative care only deals with end-of-life issues.

It’s important for people with stage IV lung cancer to understand that palliative care can help you manage treatment side effects. I’ve used it to relieve side effects like nausea, diarrhea, and rash.

Palliative care helps me focus and be smarter about what I eat and how I take care of myself, so I feel better overall. It can help patients and caregivers deal with anxiety and provide great resources when you need help. Palliative care focuses on the well-being of the patient and those who support them while your oncologist focuses on how to treat your cancer.

Join a Support Group

I also highly recommend finding a patient-focused support group. You’ll meet people who have walked in your shoes with whom you have a common experience, and people who can offer insight on how to deal with new experiences.

A support group is a great source of comfort. You don’t get medical advice there because that’s not the purpose, but you can learn from someone else’s experience with things such as how to deal with treatment side effects or dealing with anxiety.

I live in Palo Alto, CA. A friend made me aware of the GO₂ Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation). They host a lung cancer support group called “The Living Room” on the third Tuesday of every month. They invite thought leaders (doctors, researchers) in the lung cancer community to educate patients and answer their questions about lung cancer. That experience has been life-changing for me. The knowledge I’ve gained and the camaraderie I’ve found in this group is one of the most comforting experiences I’ve had since being diagnosed.

Know When to Call

Having cancer makes you hyper aware of what’s going on in your body. When you notice strange symptoms, you immediately wonder whether your cancer is getting worse. Is it progressing? Are things getting bad?

Sometimes symptoms don’t have an explanation. But you should definitely make your oncologist aware of any new symptom that lasts for a week or more. Symptoms that persist may indicate that something is changing.

Enroll in a Clinical Trial

I’ve never participated in a clinical trial because I’m fortunate to have targeted therapies that have been effective in treating my type of lung cancer mutation. But I will not hesitate to participate in a clinical trial if I need a new, not yet approved treatment that can potentially offer hope to help control my lung cancer.

Clinical trials have given us very effective treatments that are helping to keep many of us alive. There are clinical trials looking at all sorts of treatments. The treatments in a clinical trial can help improve overall survival and quality of life for people with all stages of lung cancer.

Be Involved

Bottom line, be involved in your treatment. Be active. Be interested in what’s going on. Ask your doctor questions and expect clear and specific answers.

I think the worst possible situation for anyone with a stage IV cancer diagnosis is to be in the dark, to be unsure of what’s going on. It causes you to live with a horrible amount of anxiety and uncertainty.

In my 9 years of living with lung cancer, I’ve learned a lot. The Go₂ Foundation for Lung Cancer has educated me and made me an advocate for myself and others. Without them, I think my outcome would have been very different.

Remember that no one is going to care about you more than you do. You are always your own best advocate.

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December 8, 2022
Long COVID Patients Find Aid and Risk in Online Support Groups

Editor’s note: Find the latest long COVID news and guidance in Medscape’s Long COVID Resource Center.

Nov. 9, 2022 — Jill Sylte wrote that she would not have made it through long COVID without her Facebook support group, Survivor Corps.

“It has helped me so much, by being able to be in touch with other long hauler members,” the Pensacola, FL, woman wrote in a comment on a group post in March. “Everyone in this group understands each other. Unless you are a long-hauler you don’t completely feel what we are going through.”

The listing of hundreds of Facebook long COVID communities goes on for page after page. Some have a few members. Survivor Corps has nearly 200,000.

“This space has absolutely exploded in the past 2 years,” says Fiona Lowenstein, a journalist who started the group called Body Politic that has become a COVID support group.

The public Facebook COVID and long COVID groups are studded with posts and comments like this among the hundreds that can come in a day.

On a single day in late October, Survivor Corps posters were trying to find out if anyone else had hair loss, rashes, sleep apnea issues, migraines, bladder problems, neck pain, vertigo, allergies, or double vision. An October post on increasing cholesterol levels drew more than 50 comments within 17 hours.

The support groups provide advice and encouragement that patients often are not getting from their medical providers, friends, and family. They’re also a source of valuable data for researchers. But some doctors worry that they are not always entirely benign, even as they gain popularity.

From hospital Meeting Rooms to Online

Patient support groups have moved out of the hospital community room and onto Facebook, Reddit, WhatsApp, and other online spaces. Before long COVID was recognized, these forums were a lifeline for patients with chronic conditions.

After having lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, long COVID seemed familiar to JD Davids, a chronic disabilities activist in Brooklyn who works with a group called Long COVID Justice. He thinks patient groups are important for otherwise healthy people with unexplained post-infection symptoms like extreme fatigue.

“One of the problems is that these often-volunteer-based patient support groups are all that people have,” Davids says. The groups are essential to patients but need to be part of a comprehensive care plan, he says.

While offering support, online groups can be sources of misinformation and unproven remedies. Advocates and doctors say some group members come to them asking about miracle cures and supplements.

Alexander Truong, MD, a doctor at Emory University in Atlanta who works with long COVID patients, says many of his patients have bought expensive but useless vitamins and supplements they learn about online.

“A lot of these patients are grasping at straws to try to figure out anything that can make them feel better and they are very vulnerable to this kind of scam,” he said during a live online forum hosted by SciLine, a project of the American Association for the Advancement of Science.

Privacy can be another issue. Tens of thousands of people post details about their health and lives in public Facebook groups. Anyone signed on to Facebook can read the posts.

A Treasure Trove of Data

Analysis of these private patient conversations can also produce useful data for researchers. The organization Patients Like Me, founded in 2005 to support families with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) is built around the concept.

Researchers at Yale and elsewhere are already working with long COVID patient groups. Facebook’s Data for Good program offers three COVID databases based on posting on the platform. The Patient-Led Research Collaborative provided data for a study published in The Lancet that was among the first the characterize long COVID.

For Facebook groups, the site’s rules requiregroup moderators to “obtain user consent for your use of the content and information that you collect.” But the platform has been fighting “unauthorized scrapers” who lift data off Facebook and republish it.

The Survivor Corps group, the largest long COVID Facebook group with nearly 200,000 members, is public. Anyone can read any of the posts. Those signed into Facebook can click on the “People” tab and see any group members who have a single mutual contact.

Diana Berrent, a New York photographer who caught COVID-19 early in the pandemic, is the founder of and a contributor to the Survivor Corps Facebook group and its sister website. She thinks the choice of support group might be a matter of where someone already spends their time online.

“And I don’t see it’s a privacy issue,” she says. “It’s really whatever platform you’re most comfortable in.”

Berrent also runs polls and had worked with researchers at Yale, the National Institutes of Health, and elsewhere.Although the data on her site can be valuable, Berrent says she has turned down offers from buyers.

At the same time, she says she received grant money from the Bill & Melinda Gates Foundation and the Chan Zuckerberg Initiative when she started her work, but it has run out. She doesn’t want to ask for donations from support group members. She says she has funds to pay for one full-time employee and one part-time employee.

Group moderators say money for this cause is hard to come by. And this need for funding can be a vulnerability. Some well-established patient groups specializing in a range of conditions get money from the pharmaceutical industry. But with no marketable treatment for long COVID, corporate sponsors are scarce.

That can lead to please for cash.“To be blunt, our financial situation is dire. We estimate Body Politic, including our Slack space, will cease to exist by early 2023 without funding (GOAL: $500k),” Body Politic said in an Instagram post early in November.

“Our team is pursuing private donors, foundations, and strategic partners, and we could use more connections and insights on potential partners.”

Groups like Body Politic say they need money to hire more moderators, pay for increasingly robust software subscriptions, advocate for patients, offer public education, and work with government and health leaders.

The Struggle to Keep Up

Hosting a group can be a big commitment. Florida nurse Laney Bond says when COVID-19 emerged, she set up a Facebook group to help fellow nurses. Bond, who had been treated previously for mast cell activation syndrome — which can cause allergic reactions – started to develop long COVID symptoms like heart problems and brain fog.

Bond says she noticed online discussions about long COVID patients with similar symptoms and wanted to share the evidence-based medicine she had been gathering about post-viral illness.

“I just threw a group out there for people in hopes that the information and my experience would shorten their journey,” she says.

Now Bond has trouble keeping up with the 95,000 members signed up for her COVID-19 Long Haulers Support group. She also hosts a web page where she posts simplified information on COVID-19 she gets from the National Institutes of Health.

Bond is a volunteer with a day job. She says she makes about $10 a month from Google ads on the website she runs in addition to the Facebook page, but otherwise, has no funding source. So she’s backed up on the moderation.

“It’s too much, but I do my best,” she says. Facebook has provided some moderator tools to help.

A New Age of Advocacy

The internet has spawned the engaged patient – people who do their own research and plan care along with their doctors. The engaged long COVID patient is bringing in “a new age of advocacy,” David Putrino, PhD, a physical therapist and professor at the Icahn School of Medicine at Mount Sinai in New York City, writes in a Perspective for Medscape, WebMD’s sister site for medical professionals.

“Such organizations are driving incredibly comprehensive biomedical and clinical research, and doing so at an unprecedented pace,” he writes.

Support from other patients is essential for people with chronic conditions, but it need to be paired with solid medical care and support services, advocates say.

Davids says he is most active in the Body Politic channel on the online tool Slack, where 11,000 members meet privately. He appreciates that a human, not an algorithm, chooses which posts he sees. And he thinks Body Politic is well moderated, something he and others suggest patients consider when joining a group.

“Support groups should be moderated. You could ask as a support group member — how are our moderators trained? How do you know are they equipped to manage the space?” he asks.

The Survivor Corps page is “heavily, heavily, moderated,” Berrent says. Users “cannot state a scientific fact unless they link to a legitimate source,” she says. They can talk about what has helped them, but they can’t give medical advice or talk politics.

Conflict among group members may be a source of agitation and that could be a drawback, Davids cautions. He suggests that patients try out a few groups and see what happens when conflicts emerge.

“How is it handled? Does it sit right with you? Does it get your heart racing — which you certainly don’t need?” he says. Davids offers a list of recommended groups on his Long COVIDJustice page.

The Body Politic group was founded as a wellness collective before the pandemic but morphed into a long COVID group in 2020 when Lowenstein and another member got sick. They say they couldn’t find help anywhere else.

Lowenstein, who now has mild symptoms and no longer runs the group, agrees that patient support groups should be well-moderated. Lowenstein also thinks they should be limited to those with long COVID and worries that journalists and people curious about COVID dwell on the public sites.

“It’s not a particularly private or safe-feeling space for people with long COVID,” Lowenstein says.

Facebook has taken some action on COVID communities, including an effort to look for members in distress. Bond, who runs the COVID Care Group, says she was vetted by Facebook earlier this year and they shared some moderator tools, including a red flag for postings that suggest suicide. Bond says she did 20 suicide interventions last year for long COVID patients.

Meta, the parent company of Facebook and Instagram, has COVID and vaccine misinformation policies. The company reports that it has removed 27 million pieces of content from Facebook and Instagram feeds and more than 3,000 accounts, pages, and groups for violations.

But the stream of posts and comments continues. Christian Sandrock, MD, director of critical care at University of California Davis, says many of his long COVID patients get information on Facebook.

“What we really say is — almost as an absolute — is if anyone is saying this definitely works, this is awesome, it is a quick fix … don’t go with,” he said during the SciLine briefing. “We know this disease is complex. We know we don’t have good answers.“

Source link

November 9, 2022
Long COVID Patients Find Aid and Risk in Online Support Groups

Nov. 9, 2022 — Jill Sylte wrote that she would not have made it through long COVID without her Facebook support group, Survivor Corps.

“It has helped me so much, by being able to be in touch with other long hauler members,” the Pensacola, FL, woman wrote in a comment on a group post in March. “Everyone in this group understands each other. Unless you are a long-hauler you don’t completely feel what we are going through.”

The listing of hundreds of Facebook long COVID communities goes on for page after page. Some have a few members. Survivor Corps has nearly 200,000.

“This space has absolutely exploded in the past 2 years,” says Fiona Lowenstein, a journalist who started the group called Body Politic that has become a COVID support group.

The public Facebook COVID and long COVID groups are studded with posts and comments like this among the hundreds that can come in a day.

On a single day in late October, Survivor Corps posters were trying to find out if anyone else had hair loss, rashes, sleep apnea issues, migraines, bladder problems, neck pain, vertigo, allergies, or double vision. An October post on increasing cholesterol levels drew more than 50 comments within 17 hours.

The support groups provide advice and encouragement that patients often are not getting from their medical providers, friends, and family. They’re also a source of valuable data for researchers. But some doctors worry that they are not always entirely benign, even as they gain popularity.

From Hospital Meeting Rooms to Online

Patient support groups have moved out of the hospital community room and onto Facebook, Reddit, WhatsApp, and other online spaces. Before long COVID was recognized, these forums were a lifeline for patients with chronic conditions.

After having lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, long COVID seemed familiar to JD Davids, a chronic disabilities activist in Brooklyn who works with a group called Long COVID Justice. He thinks patient groups are important for otherwise healthy people with unexplained post-infection symptoms like extreme fatigue.

“One of the problems is that these often-volunteer-based patient support groups are all that people have,” Davids says. The groups are essential to patients but need to be part of a comprehensive care plan, he says.

While offering support, online groups can be sources of misinformation and unproven remedies. Advocates and doctors say some group members come to them asking about miracle cures and supplements.

Alexander Truong, MD, a doctor at Emory University in Atlanta who works with long COVID patients, says many of his patients have bought expensive but useless vitamins and supplements they learn about online.

“A lot of these patients are grasping at straws to try to figure out anything that can make them feel better and they are very vulnerable to this kind of scam,” he said during a live online forum hosted by SciLine, a project of the American Association for the Advancement of Science.

Privacy can be another issue. Tens of thousands of people post details about their health and lives in public Facebook groups. Anyone signed on to Facebook can read the posts.

A Treasure Trove of Data

Analysis of these private patient conversations can also produce useful data for researchers. The organization Patients Like Me, founded in 2005 to support families with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) is built around the concept.

Researchers at Yale and elsewhere are already working with long COVID patient groups. Facebook’s Data for Good program offers three COVID databases based on posting on the platform. The Patient-Led Research Collaborative provided data for a study published in The Lancet that was among the first the characterize long COVID.

For Facebook groups, the site’s rules requiregroup moderators to “obtain user consent for your use of the content and information that you collect.” But the platform has been fighting “unauthorized scrapers” who lift data off Facebook and republish it.

The Survivor Corps group, the largest long COVID Facebook group with nearly 200,000 members, is public. Anyone can read any of the posts. Those signed into Facebook can click on the “People” tab and see any group members who have a single mutual contact.

Diana Berrent, a New York photographer who caught COVID-19 early in the pandemic, is the founder of and a contributor to the Survivor Corps Facebook group and its sister website. She thinks the choice of support group might be a matter of where someone already spends their time online.

“And I don’t see it’s a privacy issue,” she says. “It’s really whatever platform you’re most comfortable in.”

Berrent also runs polls and had worked with researchers at Yale, the National Institutes of Health, and elsewhere.Although the data on her site can be valuable, Berrent says she has turned down offers from buyers.

At the same time, she says she received grant money from the Bill & Melinda Gates Foundation and the Chan Zuckerberg Initiative when she started her work, but it has run out. She doesn’t want to ask for donations from support group members. She says she has funds to pay for one full-time employee and one part-time employee.

Group moderators say money for this cause is hard to come by. And this need for funding can be a vulnerability. Some well-established patient groups specializing in a range of conditions get money from the pharmaceutical industry. But with no marketable treatment for long COVID, corporate sponsors are scarce.

That can lead to please for cash.“To be blunt, our financial situation is dire. We estimate Body Politic, including our Slack space, will cease to exist by early 2023 without funding (GOAL: $500k),” Body Politic said in an Instagram post early in November.

“Our team is pursuing private donors, foundations, and strategic partners, and we could use more connections and insights on potential partners.”

Groups like Body Politic say they need money to hire more moderators, pay for increasingly robust software subscriptions, advocate for patients, offer public education, and work with government and health leaders.

The Struggle to Keep Up

Hosting a group can be a big commitment. Florida nurse Laney Bond says when COVID-19 emerged, she set up a Facebook group to help fellow nurses. Bond, who had been treated previously for mast cell activation syndrome — which can cause allergic reactions – started to develop long COVID symptoms like heart problems and brain fog.

Bond says she noticed online discussions about long COVID patients with similar symptoms and wanted to share the evidence-based medicine she had been gathering about post-viral illness.

“I just threw a group out there for people in hopes that the information and my experience would shorten their journey,” she says.

Now Bond has trouble keeping up with the 95,000 members signed up for her COVID-19 Long Haulers Support group. She also hosts a web page where she posts simplified information on COVID-19 she gets from the National Institutes of Health.

Bond is a volunteer with a day job. She says she makes about $10 a month from Google ads on the website she runs in addition to the Facebook page, but otherwise, has no funding source. So she’s backed up on the moderation.

“It’s too much, but I do my best,” she says. Facebook has provided some moderator tools to help.

A New Age of Advocacy

The internet has spawned the engaged patient – people who do their own research and plan care along with their doctors. The engaged long COVID patient is bringing in “a new age of advocacy,” David Putrino, PhD, a physical therapist and professor at the Icahn School of Medicine at Mount Sinai in New York City, writes in a Perspective for Medscape, WebMD’s sister site for medical professionals.

“Such organizations are driving incredibly comprehensive biomedical and clinical research, and doing so at an unprecedented pace,” he writes.

Support from other patients is essential for people with chronic conditions, but it need to be paired with solid medical care and support services, advocates say.

Davids says he is most active in the Body Politic channel on the online tool Slack, where 11,000 members meet privately. He appreciates that a human, not an algorithm, chooses which posts he sees. And he thinks Body Politic is well moderated, something he and others suggest patients consider when joining a group.

“Support groups should be moderated. You could ask as a support group member — how are our moderators trained? How do you know are they equipped to manage the space?” he asks.

The Survivor Corps page is “heavily, heavily, moderated,” Berrent says. Users “cannot state a scientific fact unless they link to a legitimate source,” she says. They can talk about what has helped them, but they can’t give medical advice or talk politics.

Conflict among group members may be a source of agitation and that could be a drawback, Davids cautions. He suggests that patients try out a few groups and see what happens when conflicts emerge.

“How is it handled? Does it sit right with you? Does it get your heart racing — which you certainly don’t need?” he says. Davids offers a list of recommended groups on his Long COVIDJustice page.

The Body Politic group was founded as a wellness collective before the pandemic but morphed into a long COVID group in 2020 when Lowenstein and another member got sick. They say they couldn’t find help anywhere else.

Lowenstein, who now has mild symptoms and no longer runs the group, agrees that patient support groups should be well-moderated. Lowenstein also thinks they should be limited to those with long COVID and worries that journalists and people curious about COVID dwell on the public sites.

“It’s not a particularly private or safe-feeling space for people with long COVID,” Lowenstein says.

Facebook has taken some action on COVID communities, including an effort to look for members in distress. Bond, who runs the COVID Care Group, says she was vetted by Facebook earlier this year and they shared some moderator tools, including a red flag for postings that suggest suicide. Bond says she did 20 suicide interventions last year for long COVID patients.

Meta, the parent company of Facebook and Instagram, has COVID and vaccine misinformation policies. The company reports that it has removed 27 million pieces of content from Facebook and Instagram feeds and more than 3,000 accounts, pages, and groups for violations.

But the stream of posts and comments continues. Christian Sandrock, MD, director of critical care at University of California Davis, says many of his long COVID patients get information on Facebook.

“What we really say is — almost as an absolute — is if anyone is saying this definitely works, this is awesome, it is a quick fix … don’t go with,” he said during the SciLine briefing. “We know this disease is complex. We know we don’t have good answers.“

Source link

November 9, 2022
App Gives $500 Monthly to Encourage People to Build Their Own Support Community

Press Release
–

updated: Feb 1, 2017

CHICAGO, IL, February 1, 2017 (Newswire.com)
–
Mike Bardi, Co-founder of a mental health app, Project Toe, announced today a new initiative designed to grant $500 every month towards helping people build their own support group within the app.

This represents the next phase of the Project Toe app, which is designed to help people dealing with life struggles such as depression, thoughts of suicide, self-harming behavior, addiction, and a host of other life-challenging conditions. The app—which is free— works with either iTunes or Android and allows individuals to join or create a support group. The premise behind the new program is that Project Toe will give $500 to the support group that reaches the most people in their community. “We call it social-therapy,” says Mike Bardi. “It is the idea that we can leverage both technology and our own personal struggles to help those currently going through something similar today.”

“The story began with two friends walking on the beach.”

Mike Bardi, Co-founder

Introduced in 2015, the Project Toe app currently has over 6,000 active users and 3,000 support groups worldwide. Participants can use the app in a variety of ways. They can join a support group that reflects their particular issue, create a new support group, share their life story by creating a post, or chat one-on-one. Participants can also agree to engage with an online therapist if they so desire for a low fee. There is also a “grateful wall,” which allows participants to express their positive thoughts towards other members of the community.

Mike Bardi is also the author of “The Word Toe: How One Word is Redefining Mental Health” .

According to Bardi, “the story began with two friends walking on the beach. One of the friends wanted to have a non-confrontational way to let the other know she was feeling troubled without having to directly ask him for help.” Bardi’s vision is to improve mental health around the world by empowering people to help one another cope with life challenges such as anxiety, stress, loneliness, or any challenge that we all face throughout our lives.

Media Contact:
Mike Bardi
Phone: 267-614-4377
Email: mike.bardi@projecttoe.com

Source: Project Toe

Source link

January 31, 2017