Five years ago this month, David Tuller published TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study on Virology Blog. The original PACE study, published in 2011, purported to show that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) had successfully treated people with chronic fatigue syndrome, and that 30% of patients actually recovered. Tuller’s Trial By Error article built upon and expanded the work of people with ME to expose the many fundamental flaws in the design, conduct, and claimed results in the PACE trial.
Tuller could not have known that his article would be the spark that ignited PACE-Gate. While advocates had documented the many problems with the study, and had used available means to publicize them, Tuller reached a different audience. As a well-known journalist and a Lecturer at University of California, Berkeley, Tuller had mainstream credibility. Virology Blog is a widely read science blog. Exposing the defects of the study quickly led to letters to scientific journals, a successful appeal for the study’s raw data, and a reanalysis that showed the recovery claim had been grossly exaggerated.
Exposing the defects of the PACE trial was Tuller’s original intent for Trial By Error, but the work ballooned. Tuller told me that he realized PACE was a symptom of an entire paradigm:
In broad terms, the paradigm implies that, apart from some initial “trigger” that could be an infection, the symptoms (of whichever condition) are amenable to “recovery” through psycho-behavioral rehab approaches because there is no underlying organic cause. The fatigue or whatever is perpetuated by fake cognitions, deconditioning, etc. And there is always a “vicious downward cycle” that must be broken through CBT or some other intervention. [I]t’s a cookie-cutter template they seem to apply to every problem they don’t understand. . . . I’ve looked at studies of CBT for irritable bowel syndrome, HIV-related fatigue, “psychogenic” seizures, etc–they all show it does nothing to treat the illnesses in question.
Over the last five years, Tuller has written hundreds of blog posts, given and attended talks, interviewed people with ME, and published letters and articles in both scientific and mainstream outlets. The PACE-like paradigm has been inappropriately superimposed over the medical view of so many diseases that it can’t be addressed in only one area without examining it all.
Now, the subscribers to the PACE-like paradigm are trying to superimpose it onto people with long COVID. Patients are being told to exercise and to ignore the symptoms they experience. Patients report doctors who tell them that it’s their imagination, that they are simply anxious, and so on. These are all things that people with ME have heard for decades. Tuller knows that his work is relevant here too. He writes, “Now that we’re past the sixth month of the pandemic, more and more Covid-19 patients are likely to be getting diagnosed with ME, CFS or ME/CFS, so it will be important to keep an eye on these definitional challenges.”
Economic pressure at UC Berkeley in 2017 led Tuller to explore crowdfunding to support his continued work on these issues. I’ve supported his annual campaigns because I believe Tuller’s voice is needed (see 2018 and 2019).
The pandemic has created hardship and challenges for everyone, and it is a difficult climate for fundraising. Yet the pandemic creates even more urgency to the push back against the PACE paradigm, and an opportunity to study potential cases of ME as they develop. If you can, please support David Tuller’s ongoing work.
I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things about America’s response to the Covid-19 pandemic that I think we are all entitled to a daily scream.
But this week, I want to scream because of an article in the New York Times. “How Brain Fog Plagues Covid Survivors” describes the suffering of five people with cognitive problems and Long Covid. Among them is a nurse who can’t remember what her patients have told her as soon as she leaves the exam room, and an attorney who can’t understand emails or recognize her own car.
I want to scream because this happened to me.
When I got sick twenty-six years ago, my ability to concentrate was immediately affected. I was an attorney at a large firm, and everything at work took me longer than it had before. A memo that I could have written in two hours now took me six or eight hours stretched over multiple days. I couldn’t maintain cognitive effort for more than a couple hours at a time, and my work during those few hours was nowhere near as good as before. I started forgetting things and had periods of confusion.
Early one morning, about three months after I got sick, I was sitting in a partner’s office discussing an assignment. He had asked me to identify the key documents out of a closet full of file boxes and summarize them for the client. I had turned in the memo the day before. Now we were reviewing the list, and he was telling me which documents he wanted to forward to the client.
I had no idea what he was talking about. He held the small stack in his hands–a stack that I had pulled together–and he was naming the documents he wanted to include. I didn’t recognize any of them. I didn’t know what to do, so I pretended that I understood. I wrote down everything he said, hoping I could figure it out in my office. When I got to my desk, I looked at my list and looked at the documents, and I thought, “I am going to commit malpractice.” I was terrified, and the incident convinced me to take a leave of absence from work. I was never well enough to go back.
Reading that article in the New York Times put me right back in that moment, sitting at my desk and knowing that something was terribly wrong with my brain. My story from twenty-six years ago could fit into that article, and the stories from the article sound like stories I have heard from people with ME for decades.
I want to scream because this is not news. It was completely predictable that a percentage of people with Covid-19 would remain sick because it is well-established that this happens after infections. It was completely predictable that cognitive problems would be a big component of Long Covid.
I want to scream because no one believed us. I told my doctors that I got lost while driving less than a mile from my house, and that I couldn’t think because my head was full of static. None of them bothered to order cognitive testing or send me to occupational therapy. People with ME have described these symptoms to doctors and families and co-workers and teachers and policy makers, and we have not been believed.
I want to scream because there has been very little research on cognitive dysfunction and brain fog in ME. I want to scream because the lack of research means there has been no help for us, and now there is no help for people with Long Covid. What causes these symptoms? Are there any treatments that can help? What are we supposed to do–sit quietly as our brains fail?
I want to scream at NIH. No, I want to grab NIH by the lapels and shake them. We told you. We warned you. You did not believe us, and now there are many thousands more sick and frightened people who you cannot help. We were the canaries, and no one listened. I want to scream.
The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like myself and my husband, life in this pandemic is even more challenging than it was before.
The lives of people with disabilities are not valued as much as the lives of abled people, and we have seen that confirmed repeatedly over the last few months. Overall, people with disabilities are facing increased barriers right now, including barriers created by the very public health measures that are meant to protect people. We need proactive thinking and solutions to address these barriers now and avoid them in the future.
From the very beginning of the pandemic, public messaging made it clear that disabled lives are not valued the same as abled lives. News reports and official statements emphasized that *only* the elderly and people with chronic illness were at risk for complications and death from COVID-19, so the general public could feel safe. More recent calls for a “herd immunity” approach are even worse. Intentionally allowing the coronavirus to burn through the population and accepting the resulting enormous death toll is bad enough, but it is a disturbingly personal threat when your own life is one of those being offered up.
The value of disabled lives is calculated in a very literal way by the crisis standards of care used in many states. In the event of a shortage of medical resources, crisis standards of care provide frameworks for deciding which patients get access to resources like ventilators. Multiple states’ guidelines included quality-of-life judgements as part of the decision making, as in, “this person isn’t worth saving because their quality of life is so bad anyway.” Some guidelines expressly excluded people with specific disabilities such as dementia and “severe mental retardation.” Multiple advocacy groups have filed civil rights complaints, and some states modified their standards as a result. Yet there is at least one case where a disabled man was allegedly judged to not be worth saving because of his disabilities.
It’s not just public statements that show us that our lives are not valued the same as healthy, abled lives. The actions of individuals convey that message too. I am at increased risk for COVID-19 complications, as is my husband. On the few occasions I have left my home since March, I have seen people who are not wearing masks properly (or at all) or who do not maintain social distance. That behavior potentially risks my life, and it tells me that my life does not matter as much to people as their personal desire to socialize or avoid wearing a mask. People do not understand that even if they do not get sick themselves, they could make someone else very sick. They don’t make the connections between their personal behavior and the impact on public health, or on mine.
Many of our new public health measures and socio-economic adaptations have actually created new barriers for people with disabilities. For example, mask wearing is essential to reduce the spread of infection but it makes communication more difficult for deaf/hard of hearing people who need to read lips and/or rely on facial grammar. Visual cues for social distancing, such as marks on store floors, do not help people with impaired or low vision. As restaurants have moved dining outdoors and taken over sidewalks, people in wheelchairs can no longer safely move down the street.
Even our access to life-sustaining products like food and medicine has been negatively affected by the pandemic. The sudden rush for grocery home delivery services made it impossible for those of us who require these services to get our normal deliveries. Some food assistance programs could not be used for online ordering, and it took a massive advocacy effort to get at least one such policy reversed. Access to medications has also been impacted. Slowed mail delivery meant prescriptions were dangerously late. As certain prescriptions are prematurely promoted as treatments for COVID-19, people who rely on those drugs for other diseases are unable to get their medications, as happened with hydroxychloroquine.
Stay-at-home orders have challenged everyone. In many ways, my disability has made it easier to adjust to life at home during the pandemic. Abled people may now have a better understanding of what it is like to be disabled, because now they have personal experience of being prevented from enjoying their normal activities. Unfortunately, there are serious difficulties for disabled people who must continue to stay at home. For example, home health aides generally do not get paid sick leave and have been affected by PPE shortages, so people who require home health assistance must accept the potential increased risk of aides bringing the virus to them.
There is one form of access that did actually improve for many people with disabilities. When the country shut down in March, work and school moved online. Cultural and social activities did too. Suddenly, people who normally could not get outside the home for activities were able to join in. It became so much easier to work and receive healthcare, because we did not have to deal with the physical barriers of getting there.
As wonderful as this is, it is also hard to swallow. People with disabilities have needed and requested the option to work or attend school from home for years. We have been denied jobs and education because employers and schools insisted it was too burdensome to provide online access. Yet now that abled people need and want these options, it is instantly feasible. It is also true that online access is not accessible to everyone. Some people with low vision can’t use screens; some deaf/head-of-hearing people can’t understand video without captioning. There are many disabilities that make it difficult to use computers, and millions of people do not have access to the internet at all.
Some of these significant negative impacts on people with disabilities are unavoidable in the pandemic. People with chronic illnesses are at more risk from the virus, and only a treatment or vaccine can change that. However, many impacts could be moderated if disability issues were considered proactively. Our safe access to food, medicine, and healthcare must be guaranteed. Public health measures must be designed to work for people with disabilities, instead of assuming everyone can see a sign about social distancing or walk around larger restaurant seating areas. Reliance on technology solutions should also not automatically exclude those who can’t use them the same way as abled people.
People who are at higher risk for COVID-19 complications need specific guidance on what to do now that the country is re-opening. For those of us who need to continue to stay-at-home until there is a vaccine, which could be another year or more, we need additional social services and support. Our society has had eight months to learn and make adjustments for pandemic life. It is time to focus resources on helping vulnerable people cope with an extended personal shutdown.
We should also bear in mind that this pandemic will increase the number of people with disabilities. COVID-19 may cause long-term or permanent damage to the lungs, heart, and nervous system, even in people who do not get seriously ill. It is also possible that some people may never recover from COVID-19, the “long-haulers.” At this point, no one can say for certain what the individual, economic, and social costs of COVID-19 related disability will be. That is all the more reason to start treat disabled lives as equally valuable as abled lives.
Toni Bernhard has published a new book, How To Be Sick: Your Pocket Companion. Whether you have read Toni’s other books or not, I think you will find this one to be the perfect fit.
This book is not a regurgitation or abridged version of the best-selling How To Be Sick (which I have previously reviewed here). Toni received requests from readers for a smaller version of the book that they could carry with them and refer to when obstacles arise. Your Pocket Companion is literally designed to be just that. It’s small and light enough to go in a purse or pocket, and is packed with concrete suggestions that will help people deal with the many challenges of chronic illness.
Your Pocket Companion is not necessarily meant to be read straight through, although I did. It is organized around ten specific challenges, and Toni offers multiple strategies and practices to help relieve the mental suffering that these challenges bring. I like to think about it as Toni’s greatest hits, because she focuses on the issues that come up most frequently and cause the most pain.
For example, we’ve all had days when our symptoms seem too intense to bear and distraction fails to help. When I am trapped in pain and brain fog, I can’t come up with a strategy to ease my suffering. Your Pocket Companion offers ten suggestions for “Responding Skillfully to the Relentless of Symptoms.” Many may be familiar to Toni’s readers, like “weather practice” and self-compassion. Toni has distilled these practices to their essences. For example, in the second edition of How To Be Sick, Toni devotes four pages to describing Drop-It Practice, and shares a story of how she used it to deal with frustration at a doctor’s appointment. In Your Pocket Companion, Toni describes the exercise in 120 words–all you need to apply it in the moment.
Among the other challenges Toni addresses in Your Pocket Companion are how to handle the pain of receiving dismissive medical care, coping with disappointment when a new treatment doesn’t help, and coping with new medical problems. She also shares suggestions for loneliness and the pain of being dismissed by family and friends.
There’s one challenge that I think everyone can identify with right now, whether or not they are sick: “Accepting Without Bitterness How Restricted Your Life Has Become.” I wish I could hand Toni’s advice on this to everyone in America right now. She writes, “Life is one surprise after another. Some of them will be to your liking; some will not.” Toni couples that reality check with compassion. It’s okay to be unhappy about how restricted your life has become. Then gently, she suggests we acknowledge our suffering and treat ourselves with compassion. Toni doesn’t say “suck it up;” she says we should do the best we can and then “take the rest as it happens.”
One of the hallmarks of Toni’s work is her unfailing kindness. She encourages us to abandon self-blame, saying, “Blaming yourself for something that isn’t your fault wastes your precious energy.” Self-compassion is an essential practice because, “There’s no reason to be anything but kind to yourself, both in your speech and your actions.” Toni never says we can overcome these obstacles in a forceful, mind over matter, bootstrap way. Instead, her hope is that “you can learn not to let those challenges diminish you.” She reminds us that it is possible to find some peace and happiness, even if you are sick.
For me, one of the most hopeful things Toni says in Your Pocket Companion is to “Try counting each moment as a separate life,” and a chance to start anew. It’s OK if I criticize myself or feel resentment about my symptoms. In the next moment, I can try again. As I’ve gotten older, I have sometimes felt like my life is over because my “prime” was lost to illness. Toni’s suggestion to always start anew reminded me that there is always another chance. Even if I never feel any better physically, there is always another chance to respond to my circumstances. I can always try again, and again, and again.
How To Be Sick: Your Pocket Companion is a portable reference guide, like a how-to manual for coping with illness and caregiving. Having it with you can help you remember to examine your feelings and perhaps find a new way to minimize your suffering. As with all of Toni’s books, I cannot recommend it highly enough.
One thing I have learned during the COVID-19 pandemic is that people with chronic illness have a lot to teach healthy people. We have the skills and hard-earned experience of coping with social isolation and restrictions on what we want to do. This knowledge could really help all the people who are coping with isolation and restrictions for the first time.
My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more than two months. No one has come into our house. We haven’t eaten any food that we did not cook ourselves (which admittedly has made for some interesting dinners when we’re both crashed out). We lost some of the assistance we had relied on, like our house cleaners, so that has created some challenges. We haven’t always been able to get everything we wanted from a store when we wanted it, but many kind people have helped us by shopping for those items on our behalf. I miss my family, and I don’t know when I will be able to see them in person.
These are all such small problems compared to what others are enduring. I’ve watched the federal response to the pandemic with horror and alarm. My grief and anger over the death of George Floyd has transformed into a deeper pain as our cities react and burn. There is so much suffering in our country right now, and all I can do is bear witness.
The only way I know how to cope with all of this is to focus on my tiny corner of the world. I’ve been sewing masks, and writing a bit. Those of us who have socially distanced out of necessity for years have experience that can help those who are struggling with it now. I offered some advice on that in an essay for Jessica Abel’s blog.
We have found beauty in very small things. We watched two baby bunnies grow large enough to leave our yard. Now there is a chipmunk making himself comfortable here. For some reason, our pink rhododendron put on an incredible show this spring, which made the bees very happy and fat.
Someone is leaving painted rocks in the park near our house.
Our county is easing restrictions next week, although most people are acting as if the wait is already over. I don’t think our lives will change that much. Until we know more about COVID-19, and the risks for people with health issues like ours, we are not taking any unnecessary chances. I worry a great deal about the people who are required or have chosen to take chances by going back to work, back to stores and public places. I don’t think the worst is over.
During my telemedicine appointment last week, my pain management doctor asked me how I was. I said I was doing better than I had in awhile. He said that they’re hearing that from many patients in the practice, which really surprised me. Why would people with chronic pain or chronic illness be doing better now?
I have theories. For me, I think that it has helped to have much more control over my sensory inputs and energy outputs. I don’t leave the house. The only occasional visitor I’ve had stays for about an hour, and we talk through the glass storm door. No doctor appointments out of the house, which means no long car rides to and from, and no noisy waiting rooms. I haven’t had to deal with the sensory input of everyday life out in the world. Maybe this has conserved my energy and capacity, and I have been able to channel that into more meaningful activities like making masks. The satisfaction I get from that has definitely improved my mood. I also think it helps that so many people are temporarily living the housebound lifestyle. More people are moving at my speed, now.
Where do we go from here? That’s a lot easier to answer for myself than for our nation. I want to keep the things that have made my life better, like telemedicine and more peace and quiet. I am fortunate that I can wait and see what happens with the virus, watch for the next wave(s) and stay safe at home.
I think there are many lessons to be learned from our current crises, especially about our communities and supporting one another. Perhaps people will stop saying to us, “You’re so lucky to be able to stay home all the time!” now that they know how hard it can be. Perhaps we will make choices to be truly inclusive of people regardless of race, age, or disability. Perhaps we will try to heal the wounds we are inflicting upon each other.
I hope that you are in a good place, and also that you will see something in your life get better soon. We are nowhere near done with this pandemic or with hard times. Let’s remember to take care of each other.
I’ve lost count of the number of masks I’ve sewn. More than sixty, at least. I was sewing even before the CDC recommended that everyone wear masks, because I knew that my husband and I needed them. When the official word came out, I started sewing for my family and friends. Now I’m sewing masks for a local organization that donates them to institutions in need.
Sewing the masks is not technically difficult, but it is physically challenging for me. I’ve spent hours making the masks in batches, repeating each step a dozen times before moving on to the next. I stand at my cutting table, sit at the sewing machine, stand at the ironing board, then back to the machine, then the ironing board again, and so on.
I sew until I am too exhausted to stand up. Many of my family and friends are high-risk due to age, illness, or employment/living conditions. I pushed myself hard to get them the masks they needed. Now that I’m donating masks to healthcare workers, I feel even more pressure to sew as much and as quickly as I can. I crash after every sewing session, my brain fuzzy and my body beaten by pain. And then the next day, I get up and push myself to that point again.
I know this level of effort is not sustainable, and maybe even unreasonable to attempt. Perhaps I am tempting fate: if I push too hard, I could crash for days or weeks. Plus, I live in a rich country that should have been better prepared, and that should have prepared its citizens. It’s absurd that anyone needs to rely on me–a sick and disabled person–for a face mask. In 2020, shouldn’t medical supplies be made in factories?
Yet there is a long tradition of ordinary people making medical supplies for others. Every war–including modern war–has required home labor to maintain essential supplies for battle. This isn’t something that ended with Scarlett O’Hara rolling bandages for Confederate soldiers in the Civil War.
During World War I, the American Red Cross organized volunteers to make surgical dressings for American soldiers overseas. Earlier in the war, volunteers–including socialites and children–made bandages for wounded French soldiers.
Volunteers did more than roll bandages. The Red Cross organized an enormous knitting effort in support of the troops. Sweaters, socks, helmet liners, scarves, and more were all desperately needed. This was not busy work for idle ladies. Everyone was knitting all the time. School children, elderly men, college students, train conductors, prison inmates, and even wounded soldiers participated. Those who could not knit were encouraged to purchase yarn for others to knit. Between 1917 and 1919, the Red Cross estimates that Americans produced 370 million knit items.
Junior Red Cross, 1917. Chicago History Museum.
America (and the Red Cross) picked up where they left off and knit for World War II soldiers as well, even before Pearl Harbor. In November 1941, Life magazine proclaimed: “To the great American question ‘What can I do to help the war effort?’ the commonest answer yet found is ‘Knit.’” As they had in World War I, civilians knit clothing and bandages for soldiers, officially organized under the auspices of the Red Cross. And it wasn’t just Americans. British knitters, from London cabbies to the Queen, all contributed.
What is remarkable about these civilian production efforts is that it’s only one of the ways people helped. Manufacturers pivoted factory production from consumer goods to war material. Women entered the workforce to take up jobs that had previously been held by the men who were now in the armed services. Families relocated to be near war production centers, living in crowded and hastily constructed housing. Rationing became a fact of life in North America, with enforced restrictions on meat, dairy, sugar, and shortening, as well as tires, fuels, nylon, silk, and shoes. Everyone recycled everything, including foil gum wrappers, rubber bands, and fat drippings. Neighborhood scrap drives collected paper and metal, and everyone was asked to buy war bonds.
And guess what the Red Cross volunteers of World War I did when there was no need for more surgical dressings? They started making masks for the influenza pandemic of 1918-1919.
The civilian contributions to the war effort required a level of sacrifice and social cohesion unlike anything I have seen in my lifetime. It makes our current panic over temporary shortages of flour and toilet paper look even more ridiculous and overprivileged.
We are not at war (despite some political rhetoric to the contrary). However, we still need a massive nationwide effort to protect people until we have treatments or a vaccine against COVID-19. Healthcare workers, especially in large cities, are putting their lives at risk without the supplies and equipment we take for granted. Businesses are closed, millions are unemployed, and parents must manage without schools and daycare. The economic ramifications of this are hard to imagine.
Everyone has been asked to sacrifice, whether they are staying home or performing essential jobs. Every single family in America is personally impacted in some way. Yet unlike the massive mobilization of civilians during the world wars, most of us don’t have much to do in the fight against COVID-19. Most of us just need to stay home and stay out of the way. We need to avoid getting sick, which means avoiding other people as much as possible. That doesn’t have the same motivating ring to it as “Women of Britain: Come Into The Factories” or “Make Do And Mend,” or the ubiquitous “We Can Do It!”
I think the real reason so many sewists, including me, have taken on the challenge of sewing masks and scrubs is because it is a concrete way to help. We know that homemade masks and scrubs are a poor substitute for properly manufactured medical equipment. Yet here we are. We were not prepared for this pandemic. We do not have enough proper gear to protect healthcare workers, let alone all the essential workers that are putting themselves at risk for us. Providing cloth masks to healthcare workers, or staff in nursing homes, or grocery delivery drivers is a way to say thank you, and to hopefully make their jobs a little safer.
Yes, I’ve been sewing masks until my spine is screaming and my hands are aching. I’ve been spending my energy at the sewing machine, which means I have none left for other activities. But I think that pain and exhaustion are small sacrifices compared to what essential workers are contributing right now.
I don’t want to get sick, and I don’t want others to get sick. So in addition to practicing self-quarantine, I am making masks. It hurts. It is exhausting. And it’s a sacrifice I can make.
The COVID-19 pandemic has expanded dramatically in the last two weeks. I won’t attempt to summarize everything that has happened; there’s too much. Instead, I have gathered some information that I hope will be helpful to people with ME and their families and friends.
My focus in this post is your safety, both physical and emotional, while we all live with new restrictions and social distancing/isolation. Note: the situation is changing rapidly and will vary by location. Please stay on top of guidance for your location and seek competent medical advice as warranted.
Where To Get Information
You need to have access to accurate and reliable information about COVID-19 and your local situation. Bookmark the following websites, and check them regularly:
Your national government’s information page: In the United States, that is coronavirus.gov. In the United Kingdom, the UK government response page looks best (UK readers, correct me if I am wrong).
Your local government’s information page: In the United States, that means your state and your city/county public health department pages. Find them and bookmark them. The best information on local restrictions will be posted there. In the UK, I assume city/county pages are best (UK readers, correct me if I am wrong).
Your local media: National news is important, and some major US papers are providing free access to coronavirus coverage. However, the most useful information about what is happening will be in your local paper. Find it and check it regularly.
Disease-specific information: There are many high risk groups, including immunocompromised people. For safety’s sake, I think we should assume that people with ME–especially severe ME–are at high risk for more severe disease and complications from COVID-19 than healthy people. MEAction has published resources for people with ME. I have seen disease-specific information from diabetes and multiple sclerosis groups too.
Meeting Your Basic Needs
People with ME, especially those who live alone, already struggle to meet basic daily needs. The public health information I’ve been reading doesn’t address these fundamentals, but I think it’s important to spell them out.
Food: I know the general guidance is to have two weeks of supplies in the house. But honestly, lots of people can’t do this easily. Whether it’s money, or access to grocery stores, or the ability to prepare food every day, people with ME already have challenges here. Think about what is easy for you to eat when you are too sick to cook. Set up for grocery delivery (slots fill up very fast) or ask someone to shop for you.
Medical Care: Order prescription refills as soon as you are eligible. Don’t wait until a bottle is almost empty to buy nonprescription products. Make sure you keep your doctor’s contact info handy, and share it with someone you trust to call on your behalf if needed.
Hygiene: Laundry and housecleaning are two tasks that are very difficult for many people with ME. It’s even more challenging now, especially if you live alone, because it’s best not to have people coming in and out of your house. If you need help with these tasks, think about ways to get the help without having too much close contact with outside helpers, such as sitting in a different room while someone cleans.
Contact: We all need human interaction to stay as healthy as possible. This is especially important if you live alone because social distancing means no social visits. Check in with someone every day, or ask someone to call you to check in. If you can Skype/Facetime or talk on the phone, great. If email or text is all you can manage, then do that. If you have the energy, check up on your friends too.
What To Do If Sick
If anyone in your house has a fever or other symptoms of a respiratory infection: Stay at home and call your doctor. You don’t want to risk infecting someone else by going to an emergency room or medical office. You also don’t want to pick up an infection in one of those places. Stay home, and call your doctor right away for instructions.
If you or someone in your house has a medical emergency (such as trouble breathing): Call 911. Inform the operator if you think you might have COVID-19. If possible, put on a mask before help arrives.
Wash your hands, etc: Everyone in the house should be washing their hands after using the bathroom, before preparing food, before eating food, upon returning home from somewhere else, before and after interacting with someone who is ill, and so on. Don’t share glasses or other personal items.
Disinfect surfaces: We now know that the virus that causes COVID-19 can survive on some surfaces for up to 72 hours. To the extent possible, regularly clean common surfaces like doorknobs, kitchen counters, bathroom counters, faucets, etc. Even if all you can do is run a disinfecting wipe over the surface, that’s better than nothing.
The best thing we can do to reduce COVID-19 is to Stay The F*** Home. The goal is to slow infections enough that we flatten the curve, and reduce the load on the healthcare system at any one time. This applies to everyone, whether you are sick or not.
The importance of this cannot be overstated. In the United States, many local governments are mandating restrictions on: schools; gatherings; discretionary travel, shopping and social visits; eating in restaurants; and closure of nonessential retail businesses. I suspect that we will see these restrictions increase and spread as more COVID-19 infections occur and are identified. Yet even if your local area has not put restrictions in place, do it anyway.
People with ME are most likely at increased risk of severe disease and complications from COVID-19. So everyone in your house must practice extreme caution. This applies to any assistants or caregivers that come to your home as well. Everyone should follow the guidance above to wash hands frequently, disinfect surfaces, and minimize close contact.
COVID-19 is a tremendous threat to public health, which means my health, yours, and everyone we care about. The only weapon we have right now is to stop the virus from spreading through reducing human to human contact. No exceptions. No compromises.
Physical Safety
Violence in the home: As I said the other day on Twitter, I haven’t seen much public health messaging around domestic violence in a time of social distancing, and that really worries me. For many adults and children, home is not a safe place. But social distancing means those adults and children are at home, possibly with an abuser. Add to this the fact that everyone is under more stress, including economic stress, and confined to close quarters for longer than usual. This could be very dangerous for a lot of people. If you or someone you know is at risk the National Domestic Violence Hotline is open 24/7. You can call 1-800-799-7233 or text LOVEIS to 22522. And if home IS a safe place for you, then keep an eye on your friends and neighbors.
Substance abuse is more dangerous than usual for two reasons. First, people are home and under increased stress, economically and medically. That could exacerbate or even initiate a substance abuse issue. Second, people may be cut off from the substance they abuse, such as in my state where liquor stores are now closed. Withdrawal symptoms and overdose are dangerous medical situations. It can also be unsafe to be around someone who is using. If you or someone you know is at risk for substance abuse, call the Substance Abuse and Mental Health National Helpline at 800-662-HELP (4357). You can also reach out to the Crisis Text Line by texting HOME to 741741 (they have numbers for Canada and the UK, too).
Emotional Health
The COVID-19 pandemic is scary, as are the social responses to it. No one wants to be locked down or to see the healthcare system cracking as in Italy and Iran.
It’s scary for people with ME, too, but for additional reasons. Many of us are already socially distant, confined to our homes (or beds) by ME. That means we have less flexibility on how to get essential shopping done, how to access healthcare, how to clean our homes, and how to cope if our caregivers become ill. Anxiety, stress, fear, and grief are normal for all of us right now.
If you are in crisis, reach out to the Crisis Text Line by texting HOME to 741741 (they have numbers for Canada and the UK, too). In the United States, you can also call the National Suicide Prevention Lifeline at 800-273-8255.
The brilliant and very wise Josie George wrote an article sharing her perspective on “how to make being stuck inside your house a more positive experience.” It’s a lovely piece, and well worth a read.
For those of us who, like Josie, have lived with varying degrees of social distance for years, it feels odd to watch the rest of the world try to catch up. It can be hard to hear people complaining about not being able to go out to eat or attend a party. Some things about our lives have not changed with COVID-19 because we were already living with so many restrictions.
Yet I have found all of it to be very disruptive. I have struggled with my mood because we were forced to cancel plans that were very important to us. I worry about my family and my friends. I already know at least one person who may have COVID-19, and so many people I love fall into one high risk category or another. The uncertainties–will we be able to get the supplies we need, when will I see my family in person, what will happen to the economy–are endless, and I hate that.
For what it’s worth, here is what I am doing to cope and protect my emotional health. Every day that energy and weather permits, my husband and I get outside for a few minutes in the morning. At about 3pm, we stop whatever we’re doing and have a cup of tea together. In the evenings, we alternate watching tv with listening to podcasts. We talk to our essential circle of family and friends daily. I am knitting as much as I can.
I also take time each day for reflection. I hold my loved ones in my heart, and then widen that circle to people with ME and their families. Then I open my heart to everyone who is scared or struggling right now, because so many people are. It helps me to remember that we are not alone. We are all connected, and not just by the threat of pandemic.
Be safe. Take care of yourself. We’re all in this together. Remember how strong you are.
There is a new coronavirus circulating the globe, and there are quarantines of different sizes in multiple countries. This has led to great anxiety in financial markets, the media, and in communities. And you might be wondering: What should people with ME do?
I’ve gathered information from several infectious disease doctors, public health sources, and an ME specialist. While I can’t offer medical advice, I do have some basic information that I think will help (especially if you’re feeling anxious about what to do).
What is the virus?
The new virus is called SARS-CoV-2, and it originated in Wuhan, China late last year. It is believed to have jumped to humans from an animal source, as the original SARS virus did, although scientists haven’t established which animal.
SARS-CoV-2 causes a respiratory disease called COVID-19, which is characterized by fever, cough, and shortness of breath. The symptoms can range from mild to severe, and the more severe cases may require intensive care. The incubation period (the time from infection to symptom onset), is estimated to be 2 to 14 days, based on other coronaviruses. COVID-19 can be fatal in some cases, more likely in older patients or people with comorbid conditions. The World Health Organization estimates that 80% of people recover without needing special treatment.
The numbers of infected, deceased, and recovered people is changing all the time. As testing becomes more widely available, and incidences of community outbreaks change around the world, the numbers will certainly increase. We also have no idea how many people may be infected but not diagnosed because their symptoms were mild. Some scientists think that China may not be accurately reporting the number of infections. With those caveats, one large study estimated that the case fatality rate is 2.3%.
By comparison, CDC estimates that in the 2019-2020 flu season so far, there have been at least 29 million cases of flu illnesses. Most of those cases are not laboratory confirmed influenza, though. CDC also estimates at least 280,000 hospitalizations, and 16,000 deaths related to flu-like illnesses this season. For the last two years, the case fatality rate of influenza in the United States has been about 0.1%.
The simple answer is: no. Don’t panic about SARS-CoV-2. (Edited to add this excellent quote: “Panic and hysteria are not appropriate. This is a disease that is in the cases and their close contacts. It’s not a hidden enemy lurking behind bushes. Get organized, get educated, and get working.”)
There are a number of reasons why you might feel scared about it, though. The news media is giving us constant situation updates, which heightens our awareness. The lockdown of millions of people and businesses in China is impossible to ignore. Other countries are contemplating or actually taking quarantine steps, such as Japan closing all schools for a month. Financial markets are reacting poorly to the effect of quarantines on the economy. New outbreaks seems to be popping up without clear explanation, including a single case in the United States that does not appear to be linked to China. Edited to add: as of March 2nd, there is evidence of community spread in the United States. I won’t be able to keep up with the numbers every day.
One thing that is driving the fear is that this virus is new. We don’t know much about it, and we can only make educated guesses about what will happen if there is true pandemic spread. If the case fatality rate truly is 2%, then failure to contain the virus could produce frightening casualty numbers. However, if the case fatality rate is similar to influenza, then nationwide quarantine measures may be unnecessary.
Panicking doesn’t actually help anyone. We need public health decisions to be based on information, not fear. The same is true for individuals. Fear won’t help you protect yourself from SARS-CoV-2, but there are things you can do.
What Do I Do?
As of today, there are no special recommendations for immune compromised people on how to avoid COVID-19 infection. Common sense suggests, though, that anyone with a compromised or wonky immune system should be extra careful. That includes people with ME or other immune illnesses, people over 65, people undergoing chemotherapy, etc. The good news is that you probably know at least one thing you can do to protect yourself from SARS-CoV-2 because you already know how to protect yourself from influenza, and the prevention measures are similar. Edited to add: the 25% ME Group has posted recommendations specific to those with severe ME.
#1: Wash your hands. Seriously, wash your hands. Use soap and water, and wash your hands for at least 20 seconds after using the bathroom or blowing your nose/sneezing. I also wash my hands before using a restroom in a public place. Edited to add: this is a fabulous video that demonstrates proper hand-washing technique. Wash your hands before eating. Wash your hands when you get home from a public place. If there is no soap and water available, use an alcohol-based sanitizer with at least 60% alcohol.
#2 Don’t touch your face. If you are out in public, don’t touch your eyes, nose, or mouth. Once you start to pay attention to it, you will be amazed how many times you do this. But if you are in public–especially in a healthcare setting–don’t!
#3 Practice cough and sneeze etiquette. Cough or sneeze into a tissue, and then throw the tissue away. Then wash or sanitize your hands. If you don’t have a tissue, try to cover your mouth with your elbow instead of your hand.
#4 Avoid sick (or potentially sick) people. If someone you know is sick, especially with a respiratory illness, it’s better not to be in close contact with them. That can be hard if the sick person lives with you or is your carer, but try to minimize your exposure (and everybody should be washing their hands). It’s a good idea to avoid large numbers of people during flu season, if you can. Be especially careful to avoid coughing/sneezing people in healthcare settings. Don’t shake hands with people, either.
#5 Ask others to practice good hygiene/infection control. People who visit you, live with you, or help care for you should all practice the same infection control measures. They should wash their hands upon entering your living space and before preparing your food. They should cough and sneeze into tissues, throw the tissues away, and then wash their hands. If they are sick–or if someone in their families is sick–then it is best for them to stay away. This is especially true for caregivers of severely ill ME patients. Caregivers must practice good hygiene and infection control measures.
#6 Sick people should wear masks. CDC does not recommend that well people wear masks to protect themselves from SARS-CoV-2 (or influenza). However, people who are sick should wear masks to protect against infecting others. Note that commonly available surgical masks do not filter out most viruses because the particles are too small. The masks that are rated N95 or better will filter viruses, but they are hard to find (or the prices have been jacked up). N95 masks are also supposed to be fitted to the individual and then tested, and most people are not doing that.
#7 Have some supplies on hand, but don’t go crazy. Some experts have recommended preparing the same way you would for a big storm: have nonperishable food and a two week supply of medications on hand. I wish one of them would tell my health insurance company that so I can actually get the two week supply ahead of schedule. Keeping easy to prepare food on hand is always a good idea for people with ME anyway, since we never know when a crash will make food shopping and prep impossible.
#8 Prepare for disruption of your routine. I have personally found the angsting over quarantine to be a bit ableist, since millions of people with serious health conditions (including ME) are already living partially or entirely as if we are quarantined. Being told to stay at home is redundant for those of us that rarely leave it. However, restrictions on who can come to us, especially those who live alone and depend on outside help, would have a significant impact. Thinking through your backup plans in advance is a good idea. Can you get groceries delivered? What are your options for getting medications or other essential items if you can’t go out for a week or more? If the person/people who help you were unavailable, do you have backup help?
#9 Make a healthcare plan. You may not be able to get to your doctor’s office easily even on a good day, if you have ME. If you are sick with an acute illness on top of ME, it will be even harder. Does your doctor offer any virtual services, such as video or phone consults? Make a plan with your primary care doctor or nearby urgent care so that you can get tested and treated if you have symptoms of any flu-like illness.
#10 Do not delay seeking healthcare. Flu-like symptoms that might be of less concern in a healthy person can be very serious for people with ME, so consulting a healthcare provider should not be delayed if fever, cough, or congestion develop. The risk of complications is too high. In the past, I haven’t always bothered to call my doctor when I spiked a fever or had bad congestion. This year, I called my doctor the moment my temperature went up, and I was able to get treatment for suspected influenza that helped my recovery. If you get flu-like symptoms, call your doctor right away. Don’t wait and risk developing more severe illness.
#11 Stay informed, but in balance. Use a reliable source to stay aware of developments in your area. You need to know if there are health advisories or local outbreaks that affect you. Once you have that information, though, stop. Unless you are a virus geek like me, the constant buzz of updates and breaking news may just wind you up. The bad weather analogy may be helpful here. You probably pay different levels of attention to storms that are 1,000 miles from you versus 100 miles versus 10 miles. The risk assessment for a viral outbreak is similar.
#12 Get vaccinated, if you can. I know many people with ME who have been advised by their doctors not to get vaccinated for influenza and other diseases. I know many others who have not received that advice from a healthcare practitioner, but who decline vaccination for a variety of reasons including concern that it will exacerbate ME. I cannot override medical recommendations people receive (obviously). However, if you CAN get vaccinated, then please GET VACCINATED. If you contract influenza or pneumonia, you will be even more vulnerable to SARS-CoV-2 infection. Similarly, if you catch COVID-19, you will be more vulnerable to influenza. These are not diseases that anyone should have to experience simultaneously, and that is especially true for people with ME. For yourself and the other vulnerable people in your life, please get vaccinated if you can. (Edited to add this point on March 2, 2020).
There is no way to virus-proof ourselves completely. However, if you follow these common sense public health recommendations, you will be better equipped to handle an infection if it comes. Do what you can to minimize disruptions to your routine. If you do get sick, take it seriously and seek healthcare.
In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What accomplishments could I brag about, apart from surviving?
The last five years have not been kind to me or the people I love. My mother died. Then my brother-in-law died. A year after that, my mother-in-law died. My husband had a stroke and is permanently disabled. My best friend’s mother died, and my other best friend’s father died. Family members moved away. We spent more than a year and thousands of dollars in a legal fight to keep my husband’s disability benefits. I had surgery, and my best friend broke her back. Another friend was diagnosed with a degenerative disease. My dog died.
Yet the first thing I thought of whenever I saw one of those decade accomplishment posts was, “My book isn’t done. I’ve poured so much into it, and I don’t even have a completed first draft.” I realized a few days ago that there’s a pretty good explanation for that. *gesticulates wildly at the previous paragraph*
For the last few years, I’ve marked the new year in cake form. I think my attitude about those years is pretty obvious.
As I thought about this year’s cake, though, I thought about some of the wonderful things that happened in the last few years. My niece and nephew (7 and 4 years old, respectively) are amazing and wonderful and funny. I started playing the cello, and my excellent teacher has also become a friend. I grew extremely close to two new friends, and I met one of my heroes. I attended a Yo-Yo Ma concert. My ME hasn’t gotten worse. The book isn’t done, but I haven’t given up working on it.
All the hardships of the last few years have not broken me. That’s what I want to remember, not all the failures and all the things I did not accomplish. Not the goals and milestones I did not reach. Not the losses.
I’ve done more than just survive. I am a different person, a better person (I hope). I hate things about my life, but not my life as a whole. If someone had told me in 2014 all the shit that was going to come down between January 2015 and January 2020, I a) would not have believe them and b) I would have noped right out the door. I never would have predicted that I could walk through all that and be ok.
I have no doubt that more fuckery awaits me. I love many people, and some of them are probably going to pass away before I do. I may never finish my book. There will be more hardship, and at the end I will die. Yet there will also be new people to meet and new things to experience. And you never know, I may actually finish the book and maybe you will get to read it.
So this year’s cake went in a different direction than previous years.
I don’t mean to tempt fate with this one. I want to take each year (each day) as it comes, and do my best with whatever happens next. I guess I’ve done ok so far.
David Tuller: Making Progress Together
For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work.
Five years ago this month, David Tuller published TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study on Virology Blog. The original PACE study, published in 2011, purported to show that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) had successfully treated people with chronic fatigue syndrome, and that 30% of patients actually recovered. Tuller’s Trial By Error article built upon and expanded the work of people with ME to expose the many fundamental flaws in the design, conduct, and claimed results in the PACE trial.
Tuller could not have known that his article would be the spark that ignited PACE-Gate. While advocates had documented the many problems with the study, and had used available means to publicize them, Tuller reached a different audience. As a well-known journalist and a Lecturer at University of California, Berkeley, Tuller had mainstream credibility. Virology Blog is a widely read science blog. Exposing the defects of the study quickly led to letters to scientific journals, a successful appeal for the study’s raw data, and a reanalysis that showed the recovery claim had been grossly exaggerated.
Exposing the defects of the PACE trial was Tuller’s original intent for Trial By Error, but the work ballooned. Tuller told me that he realized PACE was a symptom of an entire paradigm:
Over the last five years, Tuller has written hundreds of blog posts, given and attended talks, interviewed people with ME, and published letters and articles in both scientific and mainstream outlets. The PACE-like paradigm has been inappropriately superimposed over the medical view of so many diseases that it can’t be addressed in only one area without examining it all.
Now, the subscribers to the PACE-like paradigm are trying to superimpose it onto people with long COVID. Patients are being told to exercise and to ignore the symptoms they experience. Patients report doctors who tell them that it’s their imagination, that they are simply anxious, and so on. These are all things that people with ME have heard for decades. Tuller knows that his work is relevant here too. He writes, “Now that we’re past the sixth month of the pandemic, more and more Covid-19 patients are likely to be getting diagnosed with ME, CFS or ME/CFS, so it will be important to keep an eye on these definitional challenges.”
Economic pressure at UC Berkeley in 2017 led Tuller to explore crowdfunding to support his continued work on these issues. I’ve supported his annual campaigns because I believe Tuller’s voice is needed (see 2018 and 2019).
The pandemic has created hardship and challenges for everyone, and it is a difficult climate for fundraising. Yet the pandemic creates even more urgency to the push back against the PACE paradigm, and an opportunity to study potential cases of ME as they develop. If you can, please support David Tuller’s ongoing work.