Interesting weekend, although nothing happened and I didn't go anywhere except the grocery store on Saturday. I commented to the greeter at the store, a young man, about the length of the line up to get in and he responded that his mother always planned well ahead for Easter so that she didn't have to shop between Good Friday and Easter Sunday. I said, yeah, good plan, although sometimes there's a last minute item you absolutely have to have right away (for me it was a sweet potato; I know, not really a must-have but in my mind it was), he agreed and we laughed. So that was pretty much all the excitement for the long weekend.
~ ~ ~ ~ ~ ~
Hapi keeps changing her schedule, each change involves more sleep time, she just rearranges her day to accommodate the increased amount of sleep time. So these days she sleeps from supper time to noon or later, has a midday or early afternoon meal and then a walk and then her late afternoon supper. She does some 'sundowning' after her supper, I try to grin and bear it although sometimes I lose my temper when it goes on and on and on. Her bedding is stinky which means my bedroom is stinky.
I used to have scent-free laundry detergent but the last purchase was excessively scented. Since I hang my laundry to dry indoors, well, between overly-scented laundry detergent and stinky dog, it's quite overwhelming. Let's just say that I can't wait till the weather improves enough to hang laundry outdoors. I may have to cave and toss the heavily scented stuff for some expensive unscented detergent.
~ ~ ~ ~ ~ ~
I've been doing some online reading about the little bit of research done on long Covid. Emphasis on 'little bit'. This morning I completed a detailed questionnaire about my own experience for a research survey on long Covid, being run by some 'citizen scientists' (i.e., not degreed medical researchers but interested citizens with research skills) out of the UK. It took more than an hour to complete, fortunately they warned in advance that it was long. The weather is crappy and the dog is asleep so I didn't have anything more productive to do.
What I think is interesting is that 'patients' have lost patience with doctors and are taking things into their own hands. When AIDS first reared its ugly head no bona fide medical scientists gave it credence; it took activism on the part of the patients to push them into doing the research. Now there is a diagnosis and a treatment but no cure. When Chronic Fatigue Syndrome appeared, same thing. Even today there is resistance to that diagnosis and no agreed upon treatment. There's not even an agreed upon definition of CFS (several 'official' ones but no solid agreement). So now, long Covid is going through the same process, trying to get medical people to recognize it and research possible treatments.
But this time it's different. This time the patients are doing the research. Thanks to social media and more open access to scientific research papers, the people who have the disease are doing the work. Some scientists came up with the name 'post Covid viral syndrome' but that didn't stick, 'long Covid'—a name first used by a person with the disease on Twitter (#longCovid)—did. They call themselves 'long haulers' and the scientific research community has kind of been forced to use the same terminology. There's still a long way to go, but I think it is a step in the right direction. One of the scientific papers I read last night commented that scientists need to consult with the real experts on the disease, namely the people who have it. You'd never have seen a scientist saying a thing like that even a year ago.
I think there is a sea change in people's attitudes toward complex disease syndromes. It used to be you had to wait for some degreed medical researchers to recognize it, devise a means for diagnosis and then research possible treatments. Now, people who have these unrecognized complex disease syndromes don't want to wait for degreed scientists to pay attention, nor do they want to wait for funding from official government sources. Covid has made it abundantly clear how a bunch of sick people can gum up an economy, paying attention to young sick people is starting to be a thing. [agism still works against old sick people, it'll be a while before that changes, in my opinion]
The UK seems to be making headway with this and I expect the US is too. They are further along in Covid infection rates and vaccination rates than we are here in Canada so they have more to work with. More manifestation of the disease, more recognition of its existence, more research work on it.
2 comments:
Speaking of Covid, I was appalled that the AZ vaccine was not studied for its effects on women under 55 being at a higher risk for developing clots. Daughter, a front line worker, was given the AZ before they pulled it here and only found out via media. No email was sent out to those at high risk here. She was shattered for a few days, now past the 14 day watch.
I don't know whether you've read "Invisible Women" but I highly recommend for the absence of including women in many such studies, medical technology and inventions often costing women's lives.
XO
WWW
WWW, I don't think I have read "Invisible Women" but I get the point. I do think that is changing, no doubt thanks in part to books like that. However, there is still a general understanding that since men and women belong to the same species we must all have the same biology, with a few minor although significant differences and you are right, women are under-represented in critical drug trials such as those involving cardiovascular events. Scientists are only just starting to recognize that those minor differences make huge differences in medicine. I understand the shock and anger at hearing about the AZ vaccine effects on women from the media not official sources. These days I think it is hard for official sources to keep up with the media.
I did a brief survey of online scientific thinking about the blood clot issue and as of March 2021 there was still no universal agreement on it. Yes there are blood clots, but more than normal? Is it a one in 100,000 occurrence or a one in a million occurrence? How many people participated in human trials? How many of them were under-55 women? If the blood clot risk is real, was it even possible to identify it in the original human trials, given its rarity? Or are we the masses the 'beta test' guinea pigs for these vaccines? There are a lot of mis-steps affecting some population groups more than others.
I do know that some of the human trials for the AZ vaccine did involve more younger women than men simply because they were trying to focus on health care workers, and those workers were predominantly female. Obviously not enough. It is upsetting to find out that the latest scientific thinking has reversed on a safety issue and you have been a victim of wrong or ignorant thinking, and that the media picked up on the issue before government authorities did. The blood clotting issue is not the only one.
In Toronto the hardest hit areas of the city are those neighbourhoods where low-paid essential workers are crowded together in dense high-rises. They do not have paid sick leave, Toronto doctors are saying these are the disease spreaders, not young folks crowding into bars at night. They have kids, their kids take the disease into the schools, the disease spikes every time they return to school after holidays. However, when you look at which neighbourhoods are getting the vaccine and which are not, it is notable that Forest Hill, Moore Park, Summerhill and Rosedale have the highest rates of vaccination. If you know Toronto, you know what that means. In Ontario they closed the schools one day after the kids returned from a long weekend. Those kids had one day to get together after being isolated at home with their sick low paid families. Is shutting down the schools after one day of mixing and mingling really going to help?
Post a Comment