Thread by @exceedhergrasp1

We had the space to do the research on viral infection transitioning to chronic, neurological disease before #COVID19. When we've cleared the acute outbreaks, there will be millions still sick, left without treatment or care. (1/13) #pwME

https://twitter.com/NINDSdirector/status/1245702643940495361

"How could we have anticipated this?"
The neuro disease #MEcfs has always been a time bomb. Up to 80% of cases are post-infectious. To see this coming, you would only need to know that someday soon, there would be a viral outbreak of some kind. (2/13)

Here's the math. COVID may have already infected half of the population of the UK, and previous projections estimated that half of the world's population would get COVID. Let's say that's so, for the purposes of argument. That's 3.9 billion humans. (3/13)

But only 20% are severe-presenting, at least. This matters because 'silent carriers' and the mildly affected often don't get tested and may not be counted as cases. That's 780 million. (4/13)

A comparison of various recorded cases during viral outbreaks by CDC showed 11% met CDC criteria for #CFS down the road. Lest anyone believe I'm picking and choosing, several other studies have similar results for post-EBV cases. (5/13)
ncbi.nlm.nih.gov/pmc/articles/P…

Presuming the rate of COVID to #CFS is similar -- and again, we have no reason to assume #COVID19 of all viruses will be unique in some way -- that brings us down to about 85.8 million cases of diagnosable #CFS. (6/13)

That's ~86 MILLION new people with #CFS worldwide. Those who are playing at home already may know that ~50% of those who meet CFS definitions will meet the more stringent #MEcfs criteria. We're down to 42.9 million NEW #pwME, over 1.8 million new cases in the US alone. (7/13)

For those unaware of current incidence, that will more than double the number of people with ME in the world. This doesn't even touch on other chronic, often post-viral disorders like #POTS, which can be extraordinarily disabling. (8/13)

At least 25% of those with ME will be housebound or bedbound and will need constant care. Of the other 75%, few will be able to work, even part-time. They'll need a lot of help, from their government and from their family. Because there are no FDA-approved treatments. (9/13)

We have 10,725,000 new, severely affected #pwME in this scenario. 'Severely affected' here means 'too ill to leave the house (or bed)'. And 10+ million more will be at home with them, as part- or full-time caregivers. (10/13)

I want to emphasize, again: we could have had treatments ready. We could have had management advice based on solid research. We could have had data on epi, genetics, treatments. We could have been ready for this. (11/13)

But because our healthcare system dragged its feet on ME, we are unprepared for this entirely forseeable catastrophe. (12/13)

We can and must do better. Bring in some epi people and let's get ahead of this crisis-in-the-making. (13/13)