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Millions Missing day of action: take a moment to help ME/CFS folks and long haulers [1]

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Date: 2022-09-19

Picture from 2019 day of action on ME/CFS, before Covid was a thing. Shoes from those who would like to be part of society but no longer are. There were millions then, and now there are many millions more.

As I write this, activistsare protesting in Washington DC for justice and funding for those suffering from ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome, and LC (Long Covid). ME and CFS are two different names for the same illness, and about half of people who have Long Covid meet the diagnostic criteria for an ME/CFS diagnosis. The illness is has numerous symptoms, with severe fatigue and post exertional malaise (PEM) being two of the most prominent. According to the CDC, prior to Covid, ME/CFS affected between 836,000 — 2.5 million Americans, and cost the economy up to 24 billion annually. Even on the low end, the numbers of people afflicted with ME/CFS is similar to those with MS, and HIV. It is a severely debilitating disease that prevents an estimated 75% from working and leaves about 25% housebound. Many struggle with basic tasks like bathing and preparing food. In 2014, the US Government was spending 4 million on research a year, or just $5 for ME/CFS, compared to $255 for MS, and $2,482 for HIV per patient. In 2017, the NIH tippled it’s funding to 15 million a year. If the number of those effected with ME/CFS was stable, than that would be a whopping $15 per patient.

So what is living with this illness like? It’s hell. In March of 2020 I contracted Covid. And while I had a “mild” illness, I never got fully better. I spent almost a year totally bed bound. For seven months I was too sick to bathe, and settled for wiping myself with a wet wipe or two whenever I was on the toilet, as energy allowed. I was so light sensitive that my fiance had to put tinfoil over the windows. I couldn’t even look at my phone for three months. I never saw the food I ate. When I had to talk to any kind of social service or disability resource (all of whom denounced me as not disabled and refused to help), I struggled to spell my name and give my social, often screaming at them in pain and frustration as they kept asking me for more and more information, as if that’s a thing I could easily do. This will all be familiar to those with CFS/ME, or Long Covid.



There are a lot of others like me. Estimates vary. Brookings estimates that there are 16 million working age Americans with Long Covid, and that 2-4 million of those are unable to work. So if half of those are likely to qualify for CFS/ME, then the new numbers of folks with the illness will sit around 9 million. There are 1.2 million people living with HIV in America, and last year they got 2.2 billion in funding. Biden’s allocated funds are just over half that, at 1.2 billion, for a disease that effects way more people that HIV, and has no current official treatments. And I don’t say this to suggest we should cut funding to HIV, only that our current funding in no way reflects magnitude of the problem. And check out that link, because those funds aren’t even getting out the way they need too. In other fun numbers, Long Covid is currently outpacing the cost of diabetes for employer spending this year, and is now the nation’s 3rd leading neurological disorder.

Jennifer Brea, founder of MEAction, discusses her experience with ME.

Covid is the largest mass disabling event in history. This is a five alarm fire that deserves the same level of attention, urgency and international coordination that happened when Covid first struck and we were searching for treatments an vaccines. Yet, in my experience, many have never even heard of the illness. My fiance is a professor, and I a guest for his medical ethics course where I talk about chronic/ignored illnesses, and my experience. I am lucky when one person in the class has heard of Long Covid. Frequently, someone will thank me afterward and say, “so that’s what’s wrong with me”. Yet everyone has heard of covid. How many more are sick and don't know why? What a catastrophic failure of our leaders and institutions to communicate and help.

Please join MEAction today, in their nationwide protest in requesting more funding and a national declaration of emergency in prefilled email and Tweet forms. The sooner we address this issue, the less amount of time you or someone you love has to suffer.

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[1] Url: https://www.dailykos.com/stories/2022/9/19/2123838/-Millions-Missing-day-of-action-take-a-moment-to-help-ME-CFS-folks-and-long-haulers

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