As with many people, I reached coronavirus saturation about a week ago. That said, I don’t want to miss out on key research findings so I continue to scour Twitter for commentary from experts and for newly-published peer-reviewed papers on SARS-CoV-2 (the virus) and COVID-19 (the disease). But in the past few weeks, I have found it increasingly difficult to navigate social media due to some upsetting trends I see playing out – even in the ME/CFS community.
What should be our moment to shine as a community – after all, we sure know how to shelter in place – is instead being obscured by what I view as tone-deaf opportunism by some (though certainly not all!). This has led me to turn away from Facebook for the time being and I now spend my social media time on Twitter avoiding my main feed and instead following hashtags related to the pandemic. I simply don’t have the energy or nerves to handle the stress from being upset by insensitive comments, especially ones coming from within the ME/CFS community. Call me a snowflake, but the pandemic is upsetting enough as it is.
I find myself caught between speaking out vs. following my mother’s advice: if you can’t say anything nice, don’t say anything at all. But rather than retreat under my rock, I figure it is worth making the following points, assuming I am not alone. I know some of my views may be unpopular and apologize in advance for anyone I might offend.
Support scientists on the front lines
Let’s face it, government scientists have had a hard time since the 2016 election. Now, in the midst of a pandemic, we are witnessing the very real consequences of an administration that spent the past three years deriding scientists and the institutions they work for. Sidelining and silencing scientists during this crisis has cost the United States precious time in getting on top of the pandemic. At almost every turn the current administration has sewn confusion and has made it more difficult for scientists to do their job.
Some of these same government scientists – including Dr. Anthony Fauci from NIH – have not been strong allies for ME/CFS. I get that. But is now the time to re-litigate Fauci’s role in minimizing – some would say burying – ME/CFS at NIH? Fauci has faced stiff headwinds in trying to convey accurate information about COVID-19 while at the same appeasing Trump. I am not saying to place blind trust in government scientists – they will get some of the pandemic response wrong. If so, hold them accountable for their errors. But to use COVID-19 as an excuse to complain about our mistreatment by NIH and the CDC? This approach seems less than helpful right now and will not gain ME/CFS many new allies or friends. As the saying goes, meanwhile Rome is burning.
I am not saying that we should stop advocacy efforts – far from it.
Instead, we could view the pandemic as an opportunity to retune and sharpen our messaging. We have an opening to call attention to the fact that a percentage of viral infections result in ME/CFS. For example, in one small study, 87% of SARS patients (out of 107) had symptoms consistent with ME/CFS.
Epidemiologists predict a large number of COVID-19 cases – some say up to 70% of the population will contract the virus. This offers an unprecedented opportunity to determine the percentage of patients who will go on to develop ME/CFS following an acute viral infection. Currently, around 1% of the US population has ME/CFS (likely an underestimate, but here I am assuming ~3 million people have the disease out of a population of ~330 million people in the United States). Assuming the very worst-case scenario of up to 70% of the population (~230 million people in the US) ending up with COVID-19 before a vaccine is ready, we could see a dramatic rise in ME/CFS cases in a short period of time. Simple math puts that number at 2.3 million new ME/CFS cases in the US alone (1% of 230 million). Of course, this calculation is based on some fuzzy assumptions and is meant more for the sake of argument than accuracy. The point is that with a massive number of new viral cases in a short time period we could see a huge rise in the number of ME/CFS cases in the future.
Rather than excoriating researchers for past failures, let’s get ahead of this and talk about ME/CFS as a likely sequela of COVID-19. Let’s encourage researchers working on ME/CFS to set up longitudinal studies, such as the prospective mono study by Leonard Jason, that will allow us to understand whether COVID-19 will indeed lead to a large number of new ME/CFS cases down the road. This also offers an unprecedented chance to map out the sequence of immunological events that gives rise to ME/CFS.
Similarly, we need to understand how COVID-19 will affect/is affecting people with ME/CFS. Rather than alienating researchers, let’s implore them to start reporting out on case-controlled studies so we can have a better understanding of how COVID-19 plays out in people with ME/CFS. Will we experience a higher incidence of immune hyperactivity (aka cytokine storm) or will having an impaired immune system afford some protection, as some sources have suggested? Similarly, how will people with ME/CSF respond to the COVID-19 vaccine once it becomes available? What types of treatments will be effective in our patient population? What should be the standard of care for ME/CFS patients to ensure the best outcome should we fall ill with COVID-19? And about 1000 other questions that could be explored.
Already I am seeing prominent ME/CFS researchers turning their attention away from ME/CFS to work on COVID-19 (Drs. Derya Unutmaz and Ian Lipkin spring to mind). While I commend them for stepping in, let’s remind them of the opportunity this virus presents to better understand ME/CFS.
Be an ally of those with COVID-19 and other diseases
One tool the current US administration (and elsewhere) uses is to sew divisiveness by couching various issues as a zero-sum game: if one person or group benefits it will come at the expense of another. As if there is a limit on how much love and compassion is available in the world (there is not).
We don’t need to make other people wrong – especially people with COVID-19(!) – to make ourselves right. ME/CFS is a horrible disease but so is COVID-19 by most accounts. Personally, I really struggle with comments that seek to draw attention to ME/CFS by putting other conditions down (I have seen people with ME/CFS do this with cancer as well over the years). This stance will not help advance the ME/CFS cause (or any other cause for that matter).
The complaints look something like this: “I have been suffering in silence with a disease that has been largely ignored by the medical community and now look at all of these people getting all of this attention. There are WAY more people with ME/CFS than COVID-19 cases and we have suffered for far longer.” It is a false equivalency to compare a global pandemic with a chronic illness – even one as debilitating as ME/CFS. For one thing, acute pandemics, especially one with a fairly high case fatality rate, and chronic diseases require different public health strategies and responses. Since the outbreak, I rarely see other patient populations, such as those with autoimmune conditions or cancer, whining about the fact that they are not getting as much attention as COVID-19.
As an example, I saw this post on Twitter just as the number of new cases and the death toll was exploding in Italy. It was shared somewhat widely in the community.
It’s hard to even know how to unpack the tweet above. First, it pits one very serious disease against another – when has that ever helped? Who does that help? It is also breathtaking in its ignorance about the epidemiology of pandemics as if the case number was going to remain at 60 cases in the United States? It also undermines the people with ME/CFS who have or will contract the SARS-CoV-2 virus, let alone the legions of healthy people who may go on to develop ME/CFS after recovering from COVID-19.
Support our healthy friends facing isolation
It seems like there are two approaches that people with ME/CFS are taking when talking about the growing calls for social distancing and sheltering in place. On the one hand, some are kindly reaching out to their healthy friends and family and offering support as they face the very difficult reality of having to stay home for extended periods of time. On the other hand are those who bitterly point out that we have been at this for a long time, saying things that amount to, “See, now you know what if feels like!”.
I do not mean to deny that many of us are feeling immense grief and that calls for social isolation are very triggering. I am a big fan of communal grief – often when we witness others grieving it can help us to move through our own. I am also a fan of being authentic – if you are hurting, why not try letting your healthy friends and family know about it? I am not saying that we cannot be angry – anger is an authentic feeling. Pettiness and sarcasm are not.
Another frustration being expressed is that the many accommodations being made for society right now were not available to us just weeks ago – online classes and worship, telemedicine, expanded delivery services and more. Again, rather than feeling bitter about it, let us work to make sure that these amenities remain an option to those who need them going forward. This pandemic will likely reshape our society, hopefully for the better. I often think of my counterparts who have been sick with ME/CFS for decades, long before Facebook, Netflix, Audible, etc., yet I rarely hear them complaining about the fact these services were not available to them in the early years.
Today, during #MEAwarenesshour, I went on to Twitter dreading a barrage of tweets such as the one above. I braced myself and tried to ignore small-minded comments and was so pleased to see several people striking a supportive stance such as in the tweet below (thank you, Christel, for helping to restore my faith in humanity!).
On Facebook, my friend Lynn also has been a beacon of light, offering to help healthy and ME/CFS friends alike through this crisis with creative suggestions on how to survive the isolation and tedium of staying at home day in and day out. Rather than say, “See, now you get to suffer as I have all these years,” she offers loving support and compassion. Think back to how you first felt when you were consigned to your home with no end in sight. There is fear, anxiety, grief and other big feelings involved. It doesn’t matter if you are healthy or otherwise, these are difficult emotions to navigate. I am trying to be more like Lynn by opting for compassion over bitterness.
Act graciously on social media
Another reason for taking a break from Facebook is that I grew weary of the sniping I experienced and/or witnessed. Many people are trying to offer helpful advice only to be slapped down. For example, after not being able to find hand sanitizer back in February while in rural Wales I shared a recipe for DIY hand sanitizer. I was rather shocked at the number of negative comments. “Don’t you know that hand-washing is more effective? Don’t you know that anything less than 70% ethanol is not effective?” Yes, of course, I know these things but at that point in time, it was an exercise in risk mitigation and we needed something in the car for when hand-washing was not an option. I since have seen similar helpful posts to be met with negative comments.
I could go on and on here with examples of how one person was trying to be helpful only to have another person be unkind.
For those who still have the stomach to be on Facebook, please consider acting more graciously. If someone makes a comment that you believe is inaccurate don’t assume the person is ignorant. Assume they are trying to be helpful and are seeking to engage in a meaningful way. Assume good intent. No need to cut someone down. If you think something needs to be corrected or requires some counterpoint, please do it respectfully. People are already feeling vulnerable and isolated enough as it is.
Be a voice for those who are most vulnerable to the unintended consequences of COVID-19
One bright spot on social media is those who are defenders of people with disabilities. There will be many unintended consequences of pandemic response, such as limiting supplies and coveted home grocery delivery slots needed for survival prior and during to the SARS-CoV-2 outbreak. Be a voice for these people by helping to educate healthy people in helpful ways that lead them to do the right thing.
For many with ME/CFS sheltering in place will look different from how healthy people approach the challenge. Those on the more severe end of the spectrum cannot do many of the activities that would normally keep people somewhat sane while in isolation, such as watching Netflix, doing puzzles, reading novels, cooking, cleaning, organizing, etc. Reach out to these people and acknowledge their suffering and grief.
Be a beacon for accurate information
The other reason for temporarily leaving Facebook is that I grew weary of conspiracy theories. No, SARS-CoV-2 is not a government plot or an escaped bioweapon. Check your sources before posting and allow for information to evolve.
I get that some of my comments might be construed as falling into the same traps I write about here. My intention is not to shame but to reframe some of the negative comments I have seen into positive ones.
As with all posts on COVID-19, this one is already out of date. I predict that many of my comments will be moot points in the weeks to come. One can hope.
Frozen in Amber 
I tell my wife constantly, never apologize for your opinion. You’re trying to support a community in a difficult time and that is admirable. If someone gets upset about that, then it is their issue, IMHO. I found your article thoughtful, compassionate, and proper.
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Thank you 🙂 Not offending is so hardwired in women. That, and I have always strived to be a “big tent” kind of person, trying to accommodate a diversity of views while finding common ground. Thank you for your support, as always.
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Thank you for taking the time to share your very thoughtful, informative, detailed, and positive/uplifting reflections! You are amazing and give me strength. Thank you! ~misha
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Thank you so much for your kind words! I miss you!
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Thanks for sharing and explaining your perspective. I sometimes fall into the traps above but I will take this perspective on board in future and apply it where I can. I admit I still feel hard done by in relation to this disease’s treatment in Australia- people with cancer or diabetes don’t have to fight for legitimacy for their disease. People have respect for those diseases hence on an emotive level I do feel ME is different from other diseases. Also I doubt increase in ME patients as a result of Covid will make anyone care. I do take your points though, and I’ll be better where I can. Thanks again.
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I fear you might be right. I am guessing you saw the garbage that came out of NHS Oxford last week about managing post-viral fatigue from COVID-19. We are not even anywhere near being on the other side of this pandemic and already the NHS is gaslighting COVID patients. The one thing that gives me hope is that there could be more of a critical mass if we see a large new cohort of ME patients. But I agree, I am less hopeful that this will lead to widespread understanding of our disease.
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