I haven’t posted in a while. It’s been a weird couple of months, and I just haven’t had the brain space to form a coherent sentence.
I’m not sure I have a coherent post to write today, but I want to address a couple of things – covid and ME/CFS (triggers, the future, and my pet theories about the 2 conditions), and lockdown with/without a chronic illness. Hopefully I am able to get my thoughts out in a way that makes sense. I’m crashing, and I’m not coping so well, so we’ll see.
I’m also way too tired to track down the articles I’m referencing at times through this blog. If I remember layer, when I have the energy again, I might add them in… we’ll see.
I should probably break this entry into 3 parts, but I don’t have the energy to do more than ramble, sorry.
As I’m sure everyone who can read this blog is aware, there’s a global pandemic happening at the moment. Countries are in various forms of lockdown or other management strategy to limit the spread. Millions of people are sick, hundreds of thousands are dead. Hospitals are overwhelmed all over the world (not here, but that’s another story). Italy was so bad, back in March, that doctors were having to chose who was going to be allowed to die and who they would try to save.
Some countries have opted for an unspoken eugenic ‘cleansing’ of the population, allowing everyone to get sick and wedding out those problematic vulnerable types, as if we were gazelles being hunted by lions.
It’s a scary time.
For me, the most frightening thing is the future… it looks like this corona virus might trigger ME/CFS in a significant number of those who survive it. The virus may have a death rate of around 2-5% in most countries, but the “worse than death” rate looks to be anything from 10-30% (with access to testing being such a problem for many people, we just can’t know how many people are actually infected. It’s likely to be much higher than the reported numbers). A quick Google tells me that there are 5.4 million confirmed cases, increasing by about 100,000 cases per day at the moment. If we go with 10% of those, thay means 540,000 people, with another 10,000 added each day, who are likely to suffer long term damage to their bodies as a result of this illness. Many will have organ damage, some nerve, some vascular, but among those half a million people, thousands will develop ME/CFS.
This could be a good thing, if it raises awareness and results in research funding, treatments, or a cure. Already there are teams monitoring the cells and blood chemistry of individuals from when they first became infected, in the hope that there will be a detectable change in those who develop ME/CFS. It’s an exciting opportunity, on a horrible way.
Unfortunately, for those who do become ill, it looks like the post viral symptoms are still being treated as psychological, even with what we know about Covid-19. I find this incredibly frustrating.
My pet theories
I may be totally wrong about this, so don’t take anything here as anything other than idle musings and speculation.
Covid-19 and vulnerability/infection of people with ME.
Am I at high risk of complications if I catch Covid-19? No-one seems to know. Possibly? Seems to be the best answer anyone can give. Theoretically ME would make it difficult to fight the illness, since our immune systems don’t behave properly, and any immune event of this scale could cause massive deterioration, potentially permanently. Yet even months into this global crisis “probably?” is the best answer we have. Why is that?
Very few people with ME seem to have tested positive. This may be because we are already experts at social distancing and isolation. It may be because so few of us can work so we’re mostly too poor to access testing. It may be because too few medical professionals take ME seriously so it doesn’t get recorded as a complicating factor or preexisting condition condituin. Or it may be because ME gives us some kind of super power that prevents us from catching it. We may never know.
My hypothesis is that it’s option E, a little of each. It seems that covid-19 enters the cells via ACE2 receptors, which are part of the autonomic nervous system. When I read this, ACE2 sounded familiar, so i looked into it. There’s not a lot of research on this, but the one reference I could find about ME and ACE2 receptors was a study on POTS in ME that casually mentioned that we have fewer than normal ACE2 receptors, which explained a few symptoms. If that is the case, then our lack of receptors should mean that the virus has a hard time getting into our cells and making us sick. It should also mean that if it does get into our cells, we’d have a reduced viral load compared to an otherwise healthy person, so should have milder symptoms… maybe.
The few people with ME who I’ve seen on social media talking about having had Covid-19 haven’t been able to confirm that they had it (no access to the tests) but their symptoms have been milder than those they live with who also got it. However, they have also had a significant crash post infection. Did they have Covid? Was it influenza? We don’t know, but if it was covid-19 that is an indication that the ACE2 thing matters.
Maybe ME is to this type of corona virus as sickle cell anaemia is to malaria. That would be an interesting development.
Is ME an adaptation to a similar virus?
From there I ponder further.
My zoology background is very grounded in evolution and ecology, so to me every adaptation, even negative ones, have to have an evolutionary advantage (or at least be neutral) in order for the genes to survive on a population. There seems to be no advantage to a genetic mutation that leads to ME, especially not a mutation that is present in up to 80% of the population (as the metabolic trap hypothesis suggests is the case)… so why does it exist?
I’ve decided, in an untested and a totally just in my own mind kind of way, that these things are connected. My illness started with a glandular fever type illness, it may have been EBV or it may have been a corona virus. I didn’t test positive for EBV until well after developing ME, and most people have EBV antibodies by the age of 30 anyway, so we may be making an inaccurate connection when we assume that EBV is a common cause… or maybe it’s just one of many. Certainly one of the ideas being researched right now is that ME is caused by a very clever virus that eludes detection. Maybe it gets in through ACE2 receptors. Maybe it doesn’t like high tryptophan environments. Maybe this illness is an attempt to protect us from something that could be super nasty. Maybe it was a previous corona viridae plague that our genome remembers. Maybe the 80% of the population with the metabolic trap mutation (sorry, brain can’t handle looking up the actual name of the mutation site) are the genetic herd immunity for the 20% without.
Maybe ME is a superpower, a protective shield of sorts. Or at least a malfunction of one.
Aotearoa/New Zealand responded quickly to the threat of Covid-19, restricting border activity early, and going into 4 weeks of nation wide lock down within days of community transmission being detected. We were allowed to leave our homes, but we weren’t allowed to really go anywhere or do anything once out – stay local, they told us, and stay in your bubble*. We could do essential work (emergency services, healthcare, petrol stations, supermarkets and convenience stores only at first, then online sales of essential items for delivery was added). We could exercise as much as we liked, for as long as we liked, as long as we stayed close to home, kept to certain “safe” activities, and interacted only with our “bubble”.
After 4 weeks of lockdown, we saw a significant decline in the number of transmissions. We reached an R value of <1, or “elimination”. The 2 week incubation period meant that we couldn’t safely go right back to normal, as there could still be silent transmissions happening, so over the next week we stepped cautiously into level 3, a slightly relaxed/open version of level 4. People who could not work from home could return to work but only if they had no direct contact with clients (e.g. accountants could open their offices to staff only. Hairdressers could not see clients. Tradespeople and construction could resume work). Schools would reopen for those who wished to return (up to age 14 only – they are able to stay at home alone, so would continue online learning). Cafes, restaurants, and other food outlets could open for contactless takeaways. Shops could now offer contactless pickup options for online/phone sales. Strict rules were put in place for workplaces that could open to ensure contact was limited and traceable. People were excited to get takeaways and a lot of discussion happened about the merits of different food delivery services.
After 2 weeks of “level 4 with KFC” we stepped down again, into level 2. Shops could open their doors to customers, but limited numbers. We could congregate again, with up to 10 people at a time (funerals and tangihanga were granted an exception of 50 people), with no more then 100 in a venue at a time. Cafes could have seated guests, carefully distanced with contact tracing. Hair salons opened and schools were opened further. Last week, bars opened again. Everyone who had a job to go to returned to work… almost. Certain industries are still unable to operate fully, such as events and conferences. Live theatres and music is still quite limited, and our borders remain effectively closed. Tourism has ceases, save for the handful of travellers who were with us through lockdown and a few locals who could still afford to travel.
Today the Prime Minister announced that we will stay in level 2 for at least 4 more weeks. We haven’t seen any increase in cases since reopenning, which is promising, but eradication with our borders is a real possibility so it would be foolish to not try for that. As of this weekend we will be allowed to congregate in groups of up to 100 people, as long as we know who those 100 people are and can contact all of them if needed. Life is almost back to normal. They get to see workmates, have lunch with friends, even have a few drinks after work.
Everyone is slowly returning to their lives, and begin visiting family and friends again, but mine is not.
Before lockdown, I had 2 hours per week of social interaction through band rehearsal. It was more like 30 minutes, really, because the band would be playing for most of it, but I got to talk to people who lived in other houses. Occassionally, Ryan and I would also go to a drawing group meet up, or my ME/CFS support group meeting. All together, it meant that for maybe 3 or 4 hours per week I saw other human beings.
I’m not sure when band can go back. I’m waiting for confirmation of when we can access our rehearsal space again. Drawfest will probably be the same. The support group is meeting online, which works well for us.
I miss people so much, I can’t wait to be able to socialise, even just for those few hours per week.
I’m incredibly frustrated by people close to me not realising how isolated I am every day. For me, and anyone else who lives this locked down life, level 2 meant a massive reduction in interpersonal interaction, not an increase. When do I get to go back to level 1?
* bubble: the people you live with. If you live alone, or have shared custody arrangements, the bubble may span 2 households, but no further.
This meant that my bubble was the people living in my house and the household of my flatmate’s ex-husband, as their son would visit him for 2 nights/week after the initial 2 week incubation period had passed. We could not visit our parents or other family members during level 4. In level 3, bubbles to expand once, but only in certain circumstances, so we were still unable to expand ours.