Discover and read the best of Twitter Threads about #CovidLonghaul
Most recents (7)
I spoke to @maywarren11 of the @TorontoStar about the need for better research and care for Cdn #Longhaulers. One of the most fascinating nuggets in this piece is the difficulty that the CANCOV study has had finding participants:
thestar.com/news/canada/20…
thestar.com/news/canada/20…
I'm part of three different forums with Cdn #Longhaulers, two of which have thousands of members. We all shared the information on the study as soon as we learned of it - and then we all shared the massive disappointment of discovering we could not participate.
Canada's massive screwup on testing back in the early days of the pandemic is still having an effect now on patients' ability to access medical care, sick leave and disability supports, and now its delaying the research into our condition.
This afternoon I was on a Zoom call with multiple Cdn #longhaulers. So many people identified heart issues as part of their ongoing symptoms. Yet very few of them had gotten tests or were being followed by their doctors. #COVID19 #CovidLonghaul #LongCovid #apresJ150
We know from the Germany study released last month that even people who are asymptomatic can have post-COVID heart damage. Yet here are Cdn #Longhaulers who HAVE heart symptoms who can't get tested, can't get medical care, can't even get acknowledgement. statnews.com/2020/07/27/cov…
We need to do so much better, Canada. There needs to be comprehensive care and testing for #longhaulers.
@CPHO_Canada @PublicHealthON @PattyHajdu @celliottability @DonDavies @NickelBelt
@CPHO_Canada @PublicHealthON @PattyHajdu @celliottability @DonDavies @NickelBelt
Update Day 150 (!!!!): This one's a bit of a mixed bag. Let me start with the good news. My husband and Kid 2 are asymptomatic and have been for a couple of weeks. Kid 2's energy is back and then some.
#COVID19 #CovidLonghaul #LongHauler #ApresJ120 #CovidandKids
#COVID19 #CovidLonghaul #LongHauler #ApresJ120 #CovidandKids
Kid 1's only symptom is a swollen lymph node in her chest that has been stubbornly hanging on for weeks now. We took her to the osteo yesterday and by working on her neck and shoulder, the osteo managed to bring it down in size, but the bump still bothering Kid 1.
Kid 3 got a steroid inhaler four weeks ago. After a week of using it, she had 8 blissful cough-free days. Then the cough came back. We now seem to be in a holding pattern, with 2-3 days of coughing, followed by 2-3 days without. Still waiting on the respirologist.
It's important that the conversation about re-opening schools and the plan to do so be based on actual facts, not magical thinking. The reality is that kids CAN get sick; kids DO get sick; and some kids get SERIOUSLY sick or remain sick for a LONG TIME. ctvnews.ca/health/parents…
In that respect, the comments of Dr. Anna Banerji in this article are deeply disappointing, verging on irresponsible. She says cases of kids with chronic symptoms are extremely rare. How does she know? What data is she pointing to? What surveys or tests have been done?
I remember back at the beginning of July when I did a radio interview & the doc who followed me on air also said that the vast majority of ppl who got COVID-19 recover in two weeks or less and that this issue of chronic symptoms was not really an issue.
We got an email from the OCSB yesterday asking about our school plans for the fall. Honestly, we don't have any plans until we see their plans. But seeing what they're proposing so far, I have real concerns as a mom to three #Longhaulers.
Obviously, we want to prevent our kids from getting sick. That should be our first and foremost concern. But we can't eliminate all risk, which means that some kids are going to get sick. So what happens then?
How long do kids have to stay home if they get sick? When can they return? Can they go back to school if they still have symptoms as long as they had a negative test? Or do they have to stay home as long as they have symptoms?
Update Day 120: Things are continuing to move in the right direction. My husband & I both had a relapse last weekend, but our progress is still evident. M. had one day of extreme fatigue and that was it. #Covid19 #CovidLonghaul #ApresJ120 #longhaul
I had a couple days of pleural pain, and even then it was relatively minor and only when walking or moving too much. I got a couple skin sores, but they have been tiny and did not get infected. And that was it; no full body aches, no hugely swollen glands. A bit more fatigue....
but still able to move every day and now up to an average of 5,000 steps a day. Kid 1 has had a blocked lymph node for 4 straight weeks and is a bit more sneezy than usual, but otherwise fine. Kid 2 has some days of real fatigue but mostly seems back to himself again.
"Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19." #COVID19 #CovidLonghaul #ApresJ90
blogs.bmj.com/bmj/2020/06/23…
blogs.bmj.com/bmj/2020/06/23…
Also, a very important class analysis here: "...part of the picture is missing. What about people less privileged than us articulate middle classes mobilising ourselves, writing to MPs, and talking to journalists? What about the minority groups, the single parent households, ...
...people on zero hours contracts, where long convalescence is not an option? .... Pushing themselves because they have no choice will lead to further illness, suffering, and distress. They are being left behind." Indeed. Will we do better, Canada?
