This excellent report by @kathrynsbach is very sobering. Every country, especially those who have let #Covid rip, can expect major economic damage because of #LongCovid. But as a survivor of a historical epidemic that triggered mass #MECFS I think there's plenty more to come. A🧵
https://twitter.com/kathrynsbach/status/1562506379889283073
2/ What governments worldwide don't yet seem to realise is that - even if the pandemic ends tomorrow, and not a single extra person falls victim to #LongCovid henceforth - the damage to people's lives & entire economies will likely snowball significantly over time.
3/ They don't realise this yet because governments worldwide have collectively ignored #MECFS etc for decades. They've failed to learn from previous viral epidemics that have triggered long-term disability, because they've failed to track adverse health outcomes longitudinally.
4/ This neglect means there's little research to draw upon, so I'm going to tell you my own story, to illustrate what COULD happen to uncounted millions of #LC sufferers going forward. In 1983 (and beyond) an unidentified virus swept through #NewZealand, leaving 1000's disabled.
5/ During the winter of 1983 large numbers succumbed to this 'flu-like illness. The epidemic seemed to start in a small southern town, Tapanui, but swept north & pretty soon the whole country had cases. I caught it in August 1983 - I was a fit and healthy 21-year old at the time.
6/ I was an A-grade grad student, so sick I had to drop my 2nd semester courses. In '84 I tried again, but was still exhausted & brain-fogged - diagnosed with #ME in May '84. I had to drop another course plus my thesis. So I tried AGAIN in early 1985, but couldn't keep pushing.
7/ Finally, by July 1985 (23 months after catching the #TapanuiFlu virus that had, by then, left perhaps 20,000 with #MyalgicEncephalomyelitis in #NZ) I felt well enough to enter the workforce. I was, at last, fully "recovered". 🎉🥳
8/ Or so I thought. So let me tell you what happened next, because I know it happened to numerous other victims of the #TapanuiFlu virus - and I suspect this could also happen to many people who currently believe they have fully "recovered" following #Covid or #LongCovid.
9/ The next infections I contracted after "recovering" from Tapanui 'Flu seemed to hit me harder than normal. It was like going back to square one, repeatedly. It might only last a few weeks, but my recoveries from infections seemed very slow compared to others or my old 'normal'
10/ By the late 80's the infections started coming on thicker and faster, one after another. I was always running out of sick leave at work, running behind with my projects, and sometimes I could barely catch a few days of feeling "well" again before the next infection would hit.
11/ The infections would vary - there were colds, 'flu's, gastro bugs, UTI's, skin infections, thrush - you name it, I had it. And every time my immune system would fail me - it seemed to alternate between under-reacting and over-reacting to every pathogen that crossed my path.
12/ Each infection seemed like a separate, unrelated event, so it took me DECADES to realise that these were relapses of #MyalgicEncephalomyelitis, which I I'd supposedly "recovered" from. These relapses/remissions got worse over time until the 'crashes' lasted for months on end
13/ Each relapse initially had different features, which made it really hard to connect the dots. Some relapses featured headaches, light & noise intolerance; some featured loss of balance & coordination; some featured shooting pains, or peripheral neuropathy, or muscle weakness.
14/ But every relapse featured exhaustion, 'brain fog' and post-exertional symptom exaserbation. Then, around late 2009/early 2010 - 26 years in - I had a super-relapse with all these symptoms + more. I could only stand for a few minutes, could barely walk, talk, or sit upright.
15/ I was 48 years old. As well as being peri-menopausal, I was now hypothyroid, showing signs of adrenal malfunction, my endocrine system was a mess, and my body temp plummeted. Even digesting food was hard & nutrient absorption was impaired. A complete physical collapse ensued
16/ I could no longer work & had to go on welfare - I lost my income, chewed through all my credit, lost my house, and ended up in poverty to the extent that it has been difficult to even eat properly, let alone pay for extras that might've helped me get back into remission.
17/ I've been consistently crashed for the last 12yrs, with no more remissions. So now I'm 60 & I've been suffering from the ever-worsening aftermath of catching an unknown virus, aged just 21, for 39 yrs. Will today's #PwLC still be sick & getting sicker in 2061? Can we stop it?
18/ Two other members of my family caught the Tapanui 'Flu virus in 1983 - we were all on the same uni campus when the epidemic hit. My cousin was the first to fall ill. He was a 1st year student, who had to leave university 2-3 mths in, due to this virus.
19/ He seemingly "recovered" & got on with life, but was eventually diagnosed with #MECFS a few years ago, after a period of intermittent illness. Coincidence? Plus one of my siblings caught this virus in 1983. He "recovered" but became inexplicably bedbound in the early '90s.
20/ After years of intermittent illness he was also diagnosed with #MECFS around 2016. Plus my two offspring have MECFS as well. So it could be a genetic predisposition, plus really bad luck, that 100% of my kids ended up with #MyalgicE. And/or it could be a persistent virus.
21/ Dr Michael Holmes (Uni of Otago) found a potential retrovirus in Tapanui 'Flu patients in 1986, but was thwarted by persistent refusals to fund his research. We know retroviruses (eg HIV) + some other viruses can pass from mother to child in utero. Did I pass this to my kids?
22/ Both my kids seemed exhausted even as toddlers, every childhood virus wiped them out & eventually they were triggered into full-blown ME/CFS at ages 14 & 10, following separate infections. Of note, ALL my family members with #MECFS have possible connections to that 1983 virus
23/ So here's my heartfelt warning to the world. We are likely only seeing the very tip of the #LongCovid iceberg right now, because many "recovered" people may only be in "remission". Their health is like a timebomb that could detonate at random, maybe next week or decades away
24/ Immune systems falter as we age. We are ALL aging, so adverse health outcomes from Covid will likely be magnified over time, even if the pandemic stops tomorrow. Plus Covid can pass from mothers to their unborn children, meaning a multi-generation disaster may be unfolding.
25/ So we need MASSIVE research investment into causes & treatments for #LongCovid & #MECFS NOW, to prevent a social & economic disaster that could endure for decades. Plus Governments MUST do more to educate & protect us 'cos #CovidIsNotOver. Failure to act could cost us dearly!
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