Part 1: It’s an ill wind that blows nobody any good.
COVID is a very ill wind indeed, and I don’t want to make light of it in any way. Oh, OK, well, maybe just a little bit.
But here are a couple of pieces of slightly, partly, maybe a little bit good news for people with ME/CFS.
The first item is this WIRED piece, in which it turns out that being fat is not the risk it’s touted as in the main media discussion. Since we’ve all had to give up most of our exercise, and many of us are taking antidepressant and antihistamines and even antipsychotics in an attempt to get some fracking SLEEP for once, weight gain is actually an ME/CFS risk. Especially for that subgroup of us, like me, with more neurological than gut issues.
Personally, I was offered seroquel for insomnia but after hearing about people gaining 30 or 40kg from taking it, I said a hard nope to that option. I also sometimes need to take steroids for asthma, which do cause weight gain. And I was quite surprised when my late psychiatrist said that antihistamines are well known for weight gain and appetite stimulation effects. No-one ever told me that before. And sure enough, I’d been chowing down on the doxylamine, a sleep aid sold over the counter at the chemist as Restavit. No longer, so there’s yet another reason to love my Valdoxan!
Another tiny sparkle in the great pile of COVID shit is that there may be some more money and attention in fatigue research. Unfortunately, a lot of people who got sick back in March are still having symptoms in July. Post-viral fatigue? This is NOT a happy story.
“This is a scary virus in the way it can affect people. There is a significant minority of people who have this ongoing – if you want to call it – syndrome of debilitating symptoms, so we’re sort of looking very closely at that group, both in terms of evaluating their quality of life and mental health fatigue, looking at the neurocognitive function, and then looking immunologically at whether there are any markers that would predict a symptom. So those are devastating symptoms.”
Reduced exercise tolerance was another common symptom, and the chest symptoms differed between patients. “So sometimes the chest heaviness, sometimes heart palpitations, sometimes a bit of difficulty, sort of catching their breath,” he said.
Dore said some people had dismissed these symptoms as being mainly psychologically driven, an ongoing effect of having experienced a new and concerning virus. “It’s been an incredibly anxious, uncertain time for individuals,” he said. “But I have no doubt that this syndrome has triggered, in a proportion of people, an abnormal immune response.”
Well, there’s a very familiar story, complete with those ever present “Some People” dismissing physical symptoms as psychological. But at least the researchers don’t seem to be falling for that one as much as they used to, and I don’t imagine COVID survivors are going to be prescribed CBT and GET to the same extent as in the sorry history of ME/CFS. Perhaps some benefit will spill over to us as this research is more prioritised.
Meanwhile, keep safe!
Part 2: The Latest Hackery
The main recent hack I have developed is the thermos. In summer I drink cold water, and I have a jug so I don’t have to get up too often. In the cold weather, I drink more tea. Mostly I pick herbal teas, as I don’t want caffeine after lunchtime, and also proper Camellia sinensis tea becomes nasty with excess tannins if steeped too long, so it requires more attention. That’s risky with my routine morning brain fog.
Anyway, I have this slimline thermos seen above, that is actually not really very good, which curiously makes it ideal. The slim line aspect makes it easy to stand on a coaster nearby. It has a clever space in the lid so you can carry a spare tea bag or leaves with you; this is not relevant to me but it’s a cool feature. It also has a nifty tea brewing insert, a little filter basket that sits at the top. Sometimes I use that for loose leaf – rooibos mixed with Turkish apple is my blend today. Sometimes I just chuck in a teabag, usually fruity or floral. As a side note, I have gone off licorice tea, which I used to quite like. Seems it’s another aroma that I’ve got weirdly sensitive to since my illness.
The reason it’s not very good is that the top seal has a tendency to come apart. It’s easy enough to put back together, but if you’re not very careful it means the top won’t screw on quite right and it can leak. Not good for carrying round in your backpack, but that’s not relevant to me. Also, unless you are super careful and possibly also carrying a lucky four leafed clover and the moon is in the right quarter, it doesn’t seal enough to keep fully insulated, so your tea cools down. But it’s a slow temperature loss, which means it comes down from boiling to a pleasant drinkable temperature in a few hours. Which is great, because I’ve finished my morning coffee by then and I’m ready to sip my tea over the next few hours.
I have tried looking for my version online, but it seems to have disappeared. Perhaps it’s no longer made? Anyway if you are keen to get one, this model I saw on Amazon looks very similar, except it’s a bit smaller capacity and has a bamboo coating where mine is enamel. Anyway, if you go there you can see the related items and might find something you like. Or you could check out the flasks at T2, most are a useful 500ml capacity.
(Note: pic is a screenshot, so it has a fake pinterest button under the real one. Huh.)