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This blog post was written by Katie Keating, RN, MS, patient advocate.

Long-haulers syndrome can affect anyone who has been affected by a serious illness — young, old, those who were healthy, those who have had a chronic condition, those who have been hospitalized and those who have not.

What is Long-haulers Syndrome?

Long-haulers syndrome related to COVID-19 is characterized by long-lasting symptoms which often include coughing, tightness in the chest, shortness of breath, headaches, muscle aches, and diarrhea. The most significant symptom that is being seen in coronavirus long-haulers syndrome is fatigue; this group feels very run down and tired. Patients with this syndrome may not be able to exert themselves or exercise, and simple tasks could leave them feeling exhausted with debilitating and frustrating chronic fatigue-like symptoms. Many long-haulers also report brain fog, difficultly concentrating, or feel as if they aren’t “as sharp as they used to be.”¹

This blog post was written by Katie Keating, RN, MS, patient advocate and reviewd by the Bronchiectasis and NTM Initiative Content Review and Evaluation Committee

Do you have concerns about getting the COVID-19 vaccination? Many myths, misinformation exist on social media, the news, newspapers. Below are a few of the most common myths and facts for you to ponder.

Myth #1: The vaccine contains harmful ingredients.

Fact: There is no evidence of the vaccine containing harmful ingredients.

"There are no harmful ingredients associated with the COVID-19 vaccines," according to Graham Snyder, MD, MS, Medical Director, Infection Control and Hospital Epidemiology, University of Pittsburgh Medical Center, in their online health newsletter. "The Pfizer-BioNTech and Moderna vaccines are different from traditional vaccines. Instead of containing weakened or inactive portions of the virus, the Pfizer and Moderna vaccines contain messenger RNA (mRNA). Using genetic code, these vaccines teach your body how to make select components of the virus, which triggers the immune system to attack and destroy it."

"Although these are the first examples of mRNA vaccines, the technology surrounding mRNA is not new. Data on the Pfizer and Moderna vaccines suggest they are safe, but they will continue to be monitored,"¹ writes Snyder.

The COVID-19 vaccine may cause side effects similar to signs and symptoms of COVID-19. If you've been exposed to COVID-19 and you develop symptoms more than three days after getting vaccinated or the symptoms last more than two days, self-isolate and get tested.²

This blog post was written by Katie Keating, RN, MS, patient advocate

“Gratitude and attitude are not challenges; they are choices. -Robert Braathe, business trainer and author.

Gratefulness is so important, now more than ever. Let's use our 2020 vision and sense of gratitude to make 2021 the best year possible. This is a time to reset. Yes, we definitely have challenges with our respiratory issues and limitations; however, we can work on keeping on . . . in the best way we can.

We can seek the support we need from others who have been down the path before and continually learn from them.  BronchandNTM360social allows you to post publicly (or message other members privately) to get answers that may save you days, months, or years of difficulty or unnecessary suffering. We want to support and empower you to make the very best choices on your path to wellness in the days ahead.

We must see the silver lining of the current days and recognize that what we are going through is truly eye-opening. 

A few lessons learned — positive gifts received:

While we have been quarantined, we have had access to internet, zoom, and audio/visual devices. We are not living as they did in other times of great difficulty, such as world wars, without access to robust communication means.

This blog post was written by Katie Keating, RN, MS, patient advocate

Do you feel misunderstood with your concerns and fears about your chronic lung disease and the coronavirus? Do other people compare their current lockdown experiences to yours?

For many NTM/bronchiectasis patients, our lung diseases are invisible; the COVID-19 virus is also invisible. The coronavirus can spread like wildfire before a person exhibits symptoms.

Family and friends may not understand our fears and concerns since they do not live with a chronic lung disorder and may not understand the increased risks that people with chronic diseases confront amid the added challenge of a killer virus. But as our country continues to face the limited social interaction of this pandemic, the coronavirus may give the general public better insight into — and understanding of — what patients with chronic illness deal with.

For example, many of us have lived “quarantined” to a certain degree for years; I know that I have. I can recall, more than a few times, declining an invitation for coffee with someone who casually mentioned on the phone that they are recovering from a cold or that their child is home from school with the strep throat. Our “normal” is not the same as everyone else’s – whether you’re thinking of pre-COVID times or even now more so than ever.

This blog post was written by Katie Keating, RN, MS, patient advocate

Fall is upon us; winter is approaching. Days are getting shorter with less sunlight and cooler temperatures. This can be a very challenging time of year if you are mostly homebound and especially difficult as we deal with the challenges of the pandemic. We are making history with the COVID-19 quarantine.

We have restrictions, yet we can still reach out to others.

Consider join some type of community organization — whether it is a church or synagogue group, a meet up group, a library, a recreational center — where you can chat with friends (safely in person or virtually) on a weekly basis. We all need something to look forward to and to have a sense of connectedness. Consider whether you can develop a 6-foot distance relationship with a neighbor if you have not already done so. Speaking with someone (rather than texting) for a few minutes a day is very therapeutic for both the mind and the body. It is ideal to speak with positive, understanding people about your present concerns. Avoid spending time speaking with negative people.

Focus on what is possible. If we think creatively, canceled events can turn into new opportunities of working with others.

This blog post was written by Katie Keating, RN, MS, patient advocate

For many patients, having NTM can turn into a fulltime job—and then some. Outsiders cannot comprehend some of the tasks we deal with unless they have walked in our shoes. Many of us must continue the tasks, week after week for an extended period of time. Not only do we not get paid a penny for this work, we also are left to deal with diminished earnings from our previous jobs and careers, time lost with our friends and families, and an overall lower level of social life and recreational activities.

Some patients do get well, go into remission, and can resume a normal quality of life. Others are bombarded with recurrent NTM infections and or other respiratory infections on an ongoing basis.

To begin with, scheduling a doctor’s appointment these days can take up to 20 minutes after you give the scheduler your insurance information and demographics data each time you call, even if it is in the computer system from a few months ago. Hopefully, you will be able to do a telehealth office visit due to the corona virus threat. Doctor’s office staff will assist you with setting up telehealth visits if needed.

This blog post was written by Dr. Ashwin Basavaraj, who serves as Pulmonologist at NYU Langone Health, Assistant Professor in the Department of Medicine at NYU Grossman School of Medicine, Section Chief of Pulmonary, Critical Care and Sleep Medicine at Bellevue Hospital, and Associate Director of the Bronchiectasis Program at NYU.

Airway clearance techniques (ACTs) are important management strategies in the care of patients with bronchiectasis and non-tuberculous mycobacterial (NTM) lung disease. ACTs may help bring up mucus that often times are difficult to clear from large airways. This may, in turn, help reduce inflammation, and improve symptoms and quality of life. ACTs include the use of instrumental techniques, such as positive expiratory pressure devices and high frequency chest wall oscillation vests, and various manual techniques, such as manual chest physical therapy, chest percussion, postural drainage, and active cycle breathing techniques.

Although ACTs are widely recommended by guidelines and expert opinion, high-quality research studies on the utility of ACTs are lacking. Moreover, reports suggest that ACTs are under-utilized by patients, and rates of adherence are not high. Further studies are needed comparing the effectiveness of different ACTs, as no one technique has shown to be superior to another.

It has been a long, challenging spring since the news of a quarantine hit in early March. The coronavirus outbreak was a huge adjustment for most of the world. For many of us, however, the change was not as drastic, and we did not have to make too many adjustments. People with NTM and bronchiectasis have been practicing infection-control measures for years and faced aloneness and loneliness from social isolation long before the pandemic hit. Many of us have dealt with the challenges of living with an invisible disease. Many never realized, dealt with or grieved the multiple losses we faced — career, financial, and social life losses due to the onset of a chronic lung disorder.

The general public is now grieving the abrupt changes and anticipatory modifications in their lives. This will hopefully be a short period of time for them, in comparison to others living in semi quarantine for life.

Written by: Delia Prieto, Danielle Boyce, Bill Clark, and Ruth Tal-Singer

The COPD Foundation (COPDF) continues to monitor coronavirus 2019 (COVID-19) and the way it is impacting chronic lung disease communities. We are providing resources to the community based on needs expressed through a series of surveys we are conducting throughout the COVID-19 pandemic. The COPD Foundation COVID-19 resources include a blog post being updated regularly, a series of live webinars (which are recorded and transcribed), a lengthy list of questions/answers important for the community, and important guidance information from the Centers for Disease Control and Prevention (CDC).

In late March, we launched a global survey aiming to evaluate the experience of individuals affected by chronic lung diseases during the COVID-19 pandemic. This was the first of a series of surveys we are deploying to learn about how the COVID-19 pandemic is affecting our communities. We reported some highlights of Survey #1 in a COPD Digest post, which can be found here. In late April, we launched Survey #2, which included the same questions from Survey #1 as well as more detailed questions about the effects the pandemic is having on the community. The survey was live for a little longer than one month and was completed by 776 respondents.

Below are some highlights of the results from respondents who reported having bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease. For the purposes of this article, we will refer to NTM Lung Disease as ‘NTM’. Additionally, it is important to note that not all respondents answered every question, so the percentages reported reflect only the respondents who answered that particular question.

Written by patient and advocate John Torrence

Which way is up? In this new crazy world of Coronavirus, we are being told not to go to work, to stay away from everyone, and just sit at home. Meanwhile, the bills keep coming in the mail.

For me, the world changed while I was on a road trip, 450 miles from home. I had been aware of this new virus in China, but suddenly it took over. The only talk on the TV and online was about this new virus, and the president decided it was the national priority. It is hard to know when the press is making a big deal about a small matter, and there is a long history of them doing it. My initial reaction was that things were overblown, and that we just needed to get on with our work and daily lives.

But then the death count started rising. First oversees, then here in the US. Again, I tried to use my rational mind. People die every day, from smoking, from accidents, from heart attacks, from the flu. When the doctors say that 200 people died today – that is in a country of 328 million people. But the next day, the death count doubles, and doubles again. That is something the flu death rate does not do.

I want to believe I am a young, healthy male, capable of doing a full day's work, climbing mountains, enjoying the physical world. In truth, I am a 61-year-old male, with one lobe of my lung removed due to bronchiectasis, and an eleven-year history of nontuberculous mycobacterial and other miscellaneous pulmonary infections. I use a nebulizer and vibrating vest twice a day to keep my lungs clear, and my pulmonary health is always foremost in my mind. I get tired walking across the street, so let's forget climbing mountains.