There's a Senate hearing on Long COVID today. Notice that Long COVID advocates are all wearing high quality masks? That's because they understand we are in a surge and each reinfection increases the risk of developing Long COVID.
I tuned in and was happy to hear Dr. Harkins talking about post-exertional malaise and Dr. Al-Aly talking about post viral ME/CFS. Both of these have been very low priority for so many years, not even taught in med school. ME/CFS has been ignored by all but a few dedicated researchers.
But it's much harder to ignore these things now that the pandemic has triggered so many new cases of disabling chronic illness!
Quote from an interview with Dr. Asad Khan, talking about Long Covid:
"We worship exercise, and exercise is good for most people, but when you have a post viral illness, it is the worst thing you can do ... and this is not really well known.
So there are other illnesses for example like M.E. (myalgic encephalomyelitis), Long Covid, and Lyme disease, for example, where if you make people exercise they only get worse."
"Oxygen extraction by the body’s tissues was compromised in patients who had symptoms of #exerciseIntolerance after #COVID"
"Patients are told that their symptoms are a result of deconditioning, or decline from lack of physical activity.
Our findings contradict that hypothesis."
My last day at work has been scheduled. In just 3 shifts, my 25 year career in #proAudio comes to a screeching halt while I enter the terrifying world of #disabilityInsurance.
All this because I caught #covid19, once, at work, in June 2022, despite having 4 vaccines.
The first 12 weeks were bad. Then I got a little worse each week. My weight tanked. I am 6' 3 and was a little over 200lbs (my normal weight). A year and a half later, I presently weigh 145 and dropping.
I was diagnosed with #meCFS, #PEM, #POTS, and am still having tests (CT, gastroscopy, biopsy) done on my GI.
#LongCovid is very real, and has robbed me of the luxury of clear though, easy movement, and a "normal" life.
Don't get Covid. Don't get Covid again. #WearAMask, please.
Needed to dig this out after dealing with a new potential PCP
Nope rejected them.
One, not masked and demanded I take my mask off.
Me: "No, the issue ISNT my weight, The issue is MECFS, the fibromyalgia, the POTS, the PEM, and Longcovid. The weight is BECAUSE of the other issues."
Dr: "Are you you a medical professional? No, no you are not. The issue is your weight, lose the weight and all the other problems will go away, and long covid is a hoax"
SCREAM
Dr: "You are being a problem, do I need to call security."
Me: "You are a fucking incompetent moron."
Dr: "And you are being highly abusive and refusing to listen to reality."
(yes I did file a complaint)
edit this is the same guy who wants me off all my meds, including my psychmeds
Just had one of my worst experiences since having #LongCovid - I felt so poorly this morning too after a bad night sleep, but dragged myself to an online video group chat with the NHS Long-Covid Hub. Basically the facilitators said a load of shit about how the symptoms aren't often based on anything actually being physically wrong and there is often no lasting damage (yeah, they said that with confidence) and that it is about "reframming" the brain and its response to symptoms when doing various activities. They tied this into Somatic tracking etc. I was the only one in the group that spoke out on this by saying that I was concerned they were suggesting the symptoms are in our mind rather than being the physical reality they are - for instance, they were citing that tests often say we are fine or the fact symptoms fluctuate as evidence for what they were saying. They responded by coopting terms like #PEM and #pacing but the message was for the majority of people with Long-Covid there is nothing to really worry about as it's not physically harmful and rather about retraining the brain.
I was so mad and angry and felt so isolated. Then the facilitators spent the rest of the session periodically saying things that seemed directly related to me challenging them, for instance this included: "[to the group] I am so glad you have taken it on board and seen it for what it is." "It is neuroscience" "Not going to resonate with everybody" "we are providing evidence based options". Sadly noone else spoke out and backed me up and actually people in the group backed them if anything about how useful it was (I know this will sadly include people that are new to this shit and won't know the history of this well documented by the ME/CFS community). It just added to the sense of isolation I felt. Horrible experience.
This is something I haven't experienced at the Long-Covid Hub before and seems to clearly tie into the government's agenda around Long-Covid and how they want people with Long-Covid to get back into work, as they argue being out of work for longer makes it worse etc. Retrain and reframe those symptoms at work to see the "benefits" of being a "productive" part of the system kind of BS. Oh and of course, the main facilitator has had Long-Covid and they said they used these techniques/approach to recover from it.
I am glad I said something but sad I was the only one. I also feel gaslighted. And the Hub is the main source of support I get as someone who has had Long-Covid for 3+ years. Thankfully, but also sadly, I know that there are a lot of people here on Mastodon that understand how I feel and why I feel this way.
Hey les valides en pleine santé de #Lyon, l'un-e de vous peut aider 👇 ? Vous n'arrêtez pas de raconter sur ce RS que vous adorez faire du #vélo… 😉
On rappelle que @ChiaraChiarel ne peut pas marcher plus de 300m sans s'écrouler, avec des conséquences cliniquement dangereuses les jours qui suivent (#PEM). Et n'a pas d'auxiliaire de vie pour la seconder au quotidien puisque les pouvoirs publics ne reconnaissent pas l' #EncéphalomyéliteMyalgique.
I’ve been using the built in Heart tracker app, a sleep tracking app w/ HRV, and Cardiogram to help monitor my #PEM … but I still overdo it resulting in a chain of crashes and resetting my baseline rather than moving on a recovery path. I’ve been stagnant for 6-8 months. (18 month journey)
I’m curious about your experiences. Pls feel free to share below.
I like working on projects that enable marginalised persons to take back their autonomy on and offline. I subscribe to #diy and am a voracious #autodidact. I make #bots for #mastodon and the #fedi. I'm building a replacement for #bandcamp and #spotify.
"By taking biopsies from long #COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
This is extremely important for those with Long COVID and ME/CFS. ""Experts warn that exercise can "harm" and other approaches are needed"" Spread everywhere! You may help save lives.
I noticed this issue in myself long before I was diagnosed with ME/CFS. Nobody would listen. I kept getting told I need to exercise more. As a former farmer who was raising bull breed stock, getting enough exercise wasn't the problem. Too much was.
‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’
Striving for fitness is usually healing. But for most people with long COVID, it can be toxic.
If you don’t experience #PEM (post-exertional malaise), it’s hard to understand just how overwhelming and painful it is. Why do my muscles hurt so much when I stayed in the car during our entire drive on Saturday? Why can’t I lift my legs into bed? Why do my arms hurt? Why do I keep bursting into tears? Why am I nauseated and having trouble following a TV show? Why does seeing the outside world from a car cause me to feel like I have mono all over again? #MECFS
Selbst Mediziner werden mit #LongCovid nicht ernst genommen.
"Entweder man ist eine Simulantin, hat eigentlich gar nichts, sucht nur Aufmerksamkeit. Oder man ist schwächlich. Erschöpft von der Pandemie, den Krisen der Welt [...] Oder drittens, man ist übereifrig im Leben und hat einfach einen Burnout. In jedem Fall ist man selber schuld."
Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new #chronicIllness. The author does a great job portraying some struggles common to #MECFS and #postCovid : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of #PEM. Plus, the suspense makes it a great audiobook.
Zojuist #LongCovid in nieuws bij #EenVandaag: (eindelijk) start Nederlands onderzoek... particulier gefinancierd 👏🏼Aanvulling: het zijn niet alleen 90.000 bedlegerigen. Daarnaast vele 100.000-en die in meer of mindere mate beperkt zijn in hun leven.