Stop doing standard tests on #LongCovid patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including #pwme.1/
The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
If they are, it is because doctors have not taken them seriously or can't do much even if they do because medical systems have not caught up with what is required! Look at what @resiapretorius @BeateJaegerMD are doing about microclots & Long Covid. #TeamClots 4/
Look at what @BerlinCures and the Team at Erlangen have discovered about Long Covid and GCPR autoantibodies. Learn about Long Covid and autoimmunity - …nslational-medicine.biomedcentral.com/articles/10.11… 5/
Learn about the connection between connective tissue disorders, endothelial dysfunction and Long Covid. Until you have done this or encouraged the medical system in which you work to do this, to the best of your abilities, stop making this about #mentalhealth. 6/
Learn about #POTS (come on! that is not rocket science) and #MCAS in Long Covid patients and treat them symptomatically. That part shouldn't be so hard! Learn to differentiate between actual, physical tachycardia and anxiety - that should be part of your job description! 7/
Long Covid patients don't need psychological counselling, except to handle medical gaslighting and trauma which is causing their lives & livelihoods to go down the drain. Do you job #MedTwitter! Do your f***ing job! 7/ #NEISVoid
Okay so this seems to have reached quite a few of you, so leaving this here: my #LongCovid recovery (sort of) medical story is in pinned tweet.

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More from @renudhinakaran

May 22
I used to declutter every three to four months, until #chronicillness happened. When I came back to our home in NL after my treatment in India, I was shocked to see how it looked. It was nothing like the home that @anandkumarn & I had lovingly built together. 1/
Still, I didn't want to jeopardise my hard worn health (I hesitate to call it recovery as I'm in bed 50% of the day - I was 90% in bed before). So with the help of a lovely lady who is helping us, I've been tackling inch by inch. 2/
It is starting to look like our home slowly. Truly decluttering this time & giving stuff away instead of just putting them in a place I can't see. We are redoing our bedroom to look less like a patient's room & a place that I will truly love to be in. 3/
Read 4 tweets
May 18
Today is my appa's birthday and of course I wished him good health & peace, expressing my love. He said something that shook me: "You've made me worthy of my life." 1/ #parenting
As someone who grew up with a yearning for approval from my father, this should have felt amazing. Strangely, it didn't. I mean it felt nice to hear, sure, but I felt no sense of achievement or pride or vindication. That, to me, is the true achievement here! 2/
It has taken years of therapy and living through endless struggles to realise what a good (albeit flawed) person I am - someone who never gives up & is always there for those who need me. That is enough. That should be enough. 3/
Read 4 tweets
Apr 11
#LongCovid recovery story is long but short notes here:
#POTS confirmed with heart rate variability test & started on Ivabradine.
#MCAS treated based on clinical symptoms with Desloratadine, Famotadine, Montelukast-Cetrizine
#autoimmune assays done - #rheumatoidarthritis
Started on Methotrexate after all vaccinations. GI motility treated with Prucalopride.
Lung perfusion abnormalities but no cause detected (#microclots in blood) - treated with budesonide + tiatropium inhalers, ipratropium nebuliser & supplemental oxygen. #NEISvoid
Weekly IV infusions with Saline at home. Pulmonary rehabilitation. Eyes checked - connective tissue degeneration- tear film corrected with refresh tears & gel, special glasses & convergence exercises given.
Read 7 tweets
Oct 24, 2021
22 months ago, when my brain MRI showed partially empty sella, I asked 5 doctors if it had anything to do with my symptoms. I was dismissed instantly with not a single ounce of consideration. #NEISvoid #MedTwitter 1/
This was despite the fact that I was starting to show hormonal changes. As my symptoms progressed & I was sent from one specialist to another, no one bothered to see if they had a hormonal basis - including 3 endocrinologists & a gynec- except to ask me to go on the pill. 2/
Going on the pill gave a migraine for nearly 3 weeks that needed morphine to even just breathe. No wonder! BCP are known to make intracranial pressure worse, which is not ideal if you have a partially or fully empty sella. 3/
Read 12 tweets
May 12, 2021
Today's #MyEDSChallenge is about doctors/nurses.
Epidemics, Book I, of the Hippocratic school says to doctors: "Practice two things in your dealings with disease: either help or do not harm the patient". Every chronic illness patient has seen doctors who have violated this. 1/6
First there were the doctors who didn't even bother to see us. Next the ones who saw but didn't care enough to do anything. After that came the ones who didn't know what they were doing but did it anyway, our bodies & minds be damned. 2/6 #MyEDSChallenge #NEISVoid
Later came the doctors who thought they knew best & asked us to not research about our own bodies. We were tossed & turned through CBT & GET repeatedly until our bodies & minds broke. If we are lucky & our stars align, we may find those rare doctors, #MyEDSChallenge #NEISVoid 3/6
Read 6 tweets
May 12, 2021
#NEISvoid, #ParentingwithPain chat is this Saturday, 15 May, 6 - 7 PM CET. You can find the #twitterchat guidelines: apainfulidentity.com/uncategorized/…
Q1: How do you prepare your child(ren) for the uncertainty that chronic illness causes in your life (cancelled plans, for ex)? 1/3
Q2: Have you had to take your child(ren) to your medical appointments? How did you handle it? Were they overwhelmed?
Q3: If you are in a relationship, how do you divide your parenting tasks? Is there any resentment from your partner on how this is done? 2/3 #ParentingwithPain
Q4: How involved are you in your child's day to day activities (meal prep, school run, homework assistance, etc)?
Q5: For parents of older children, has your relationship gotten better or worse as your children grew up?
#ParentinwithPain #NEISVoid #twitterchat
Read 4 tweets

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