Replying to @van00sa
I think this is true. Larry David would agree. The bald community has been shunned for far too long. It’s nice to finally get some recognition.
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My brother, when he was age twenty, came home drunk and urinated on the living room carpet, right in front of my father.
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Isn’t it the worst when you take for granted that someone—anyone—will willingly rub moisturizing cream into the back of your neck but then when you ask them, they suddenly refuse?
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Even someone who is the most ineffectual, reticent, and non-confrontational individual can block someone on social media and, as a result, feel a sense of importance and boldness like no other.
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In 2022, I wrote a fan letter to author David Sedaris, which included the following jokey limerick at the end: There was a man named Jim Who wasn’t very slim Once he jumped up in a roar And broke the goddamn kitchen floor. Three months later, I received this Roald Dahl postcard in the mail from him. I wrote a brief story about our exchange, which was the impetus for my audiobook, “Tales of an Unserious Truthteller,” a humorous collection of thirty personal stories and vignettes from a life lived slightly sideways. Link to the book in the comments if anyone is interested.
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How much does neuroinflammation play a role in #MECFS? If we assume it’s a part of the illness, are there any drugs in development to directly target neuroinflammation? @GenevieveIguess
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Nobody’s ever told me I have that certain je ne sais quoi. Instead, they’ve said I’m annoying.
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Let us not forget what the great Scott Stapp once said: “We’ve seen our share of ups and downs. Oh how quickly life can turn around. In an instant.”
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Dave Conte retweeted
From millions missings France on Facebook : ⚠️ Sensitive content: this post discusses a person who has died. 𝗔𝗿𝗻𝗮𝘂𝗱 𝗗𝗲𝗻𝗶𝘀 𝗵𝗮𝘀 𝗹𝗲𝗳𝘁 𝘁𝗵𝗲 𝘀𝘁𝗮𝗴𝗲 🥀 Arnaud was a French actor, theatre director and playwright. His career was shattered after he received an implant for an inguinal hernia. He suffered severe adverse effects and went on to develop severe myalgic encephalomyelitis (ME). We are sharing excerpts from an exchange we had with him on September 21, the day before he left for Belgium to undergo euthanasia. “I would like you to speak publicly after I am gone. I am severely affected, at a very advanced stage, and I have chosen to set myself free. I am thinking of all my brothers and sisters in this fight. Tomorrow morning, I will leave for Belgium, my final destination. After three years, I cannot go on anymore. I have no muscles left, no digestion. The physical suffering has become far too severe. I want to make it clear that my personal choice should not influence anyone else. My death should help the public and the medical system understand just how serious, and sometimes seemingly without a way out, severe myalgic encephalomyelitis can become.” Here is also the final message he posted on his Facebook page this morning: facebook.com/arnaud.denis.79… Arnaud was a tireless campaigner, denouncing the silence surrounding the adverse effects of polypropylene implants. His own criminal complaint was dismissed without further action. On September 18, Arnaud wrote: “No justice for me. Just like for thousands of victims of polypropylene hernia mesh implants in France. One final blow. One final humiliation. My criminal complaint has been dismissed. It feels as though I am being trampled into the ground.” A newspaper article published on September 18 also discussed his case: ledauphine.com/faits-divers-… An activist until the very end, he posted this video last night: facebook.com/reel/1612207400… 💙 Arnaud will remain in our thoughts. He joins the thousands of people with ME who have left this world, victims not only of the disease, but also of institutional medical abandonment.
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Dave Conte retweeted
The first thought I had when I read this was that this is literally like he killed her. The enormous gaslighting and the way he talks about her even after she died…..seriously? Emotional abuse/neglect should be more talked about. Support is suicide prevention. #longcovid #mecfs
A tragic story… a mother takes her own life because of Long Covid that developed into severe ME/CFS… And the worst part of it all? The apparent lack of support from her husband. “She was obsessed with her step count, with stairs, she kept developing new symptoms…” But for fuck’s sake, of course she was. She knew she had this awful disease and that her body was failing her. That is exactly why having an understanding, loving caregiver matters so much. It took my wife a few months to understand, and she was hard on me at first. Then she finally grasped how serious the situation was and broke down in tears, apologising for the way she had behaved. For the past year, she has been my rock. Without her, I would be dead. The love she has shown me is incredible. That poor woman never had that chance. thesun.co.uk/news/40442536/m…
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Dave Conte retweeted
A tragic story… a mother takes her own life because of Long Covid that developed into severe ME/CFS… And the worst part of it all? The apparent lack of support from her husband. “She was obsessed with her step count, with stairs, she kept developing new symptoms…” But for fuck’s sake, of course she was. She knew she had this awful disease and that her body was failing her. That is exactly why having an understanding, loving caregiver matters so much. It took my wife a few months to understand, and she was hard on me at first. Then she finally grasped how serious the situation was and broke down in tears, apologising for the way she had behaved. For the past year, she has been my rock. Without her, I would be dead. The love she has shown me is incredible. That poor woman never had that chance. thesun.co.uk/news/40442536/m…
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I wrote about me and #MECFS. (Warning: Contains talk/details of suicide. ) Read here: dconte.substack.com/p/a-forg…
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I wish I had a normal life. But as the Germans say, “Das Leben ist kein Wunschkonzert.” [Translated: Life is not a wish concert.] Instead, I am playing the bad hand I was dealt like I'm at the Bellagio in Las Vegas in a tuxedo, smoking a cigar, and with a beautiful model on each arm. Wait, that's not true at all. I'm at home in bed.
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#pwME, my mother. #severeMECFS
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Dave Conte retweeted
I’m convinced ME/CFS is a FAR, far worse disease than the doctors or even the patients describe it as. The very worst ones are too sick to tell you how sick they are. An outrage that millions of people have this and no one cares to do anything about it.
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I think one of the biggest mistakes prideful people can make is to not accept or ask for help. Every very successful person will tell you there were people along the way who helped. The idea of self-made is a myth. No one does it alone in life.
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The more you try to be quiet in the middle of the night so as not to wake up your family members, the more prone you are to accidentally dropping a fork on the kitchen floor and having the sound reverberate throughout the quiet house and waking everyone up.
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Oh no. Erik the mold guy blocked me. What will I do? @nataliezzz3
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#pwME, I know you’re not all doctors, but I’m looking for some advice. THE doctor who was the first physician in the world to identify a type of orthostatic intolerance marked by hypocapnia, which he also identified in me, cannot help me. After a series of dental visits 2 years ago, I developed severe air hunger. The only thing that reliably helps with the air hunger is Ativan because it dampens the respiratory drive, reducing the over breathing. But I’ve had to go up in dose because the air hunger is so constant and severe, and I’m afraid of tolerance. Recent brain MRI came back normal. Resting HR: 58-60 BP: 132/80 My Findings: * Reduced cerebral blood flow/supine * Low end tidal CO2: 25, 26, 23, 21 when supine and standing * Hypocapnia 24/7 * Low total catecholamines - 16 Major Symptoms: 1. Frequent Air hunger (partially controlled by Ativan) 2. Severe bloating 3. Severe Orthostatic intolerance Any thoughts on what I could do to reduce the severity of the air hunger and chronically low CO2? The only thing that’s been suggested to me is CO2 breathing retraining, which I’m doing, but it hasn’t moved the needle too much. Has helped a little so far, however. #severemecfs Health Rising actually did an article on it. Link in comments.
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