I love when doctors tell you to avoid triggers so you don’t have a chronic illness flare up. Meanwhile, the triggers are standing, eating, showering, heat, cold, working, and everything else you have to do to live your life.

Really disappointed that masks in healthcare isn't an agenda item on any politician's list in this BC election. I keep being told there are more pressing issues, but what is more important than the health of our population?

Great piece on the neglect of ME/CFS patients by health care and government! Thank you @GeorgeMonbiot

RT @KatyBruce108: "Of course, as there is no effective treatment, it’s a difficult situation for doctors as well as patients. But even wors…

Considering Japan for Vx injury or LC? Update on my journey: I wanted to share an update because quite a bit has changed since I returned from Japan. Unfortunately, my health has continued to decline. Recent immune testing has shown that my immunodeficiency is more significant than we originally understood, including inadequate protective antibody responses to pneumococcal bacteria. My autoimmune markers remain elevated, and more recent testing also shows increasing inflammatory activity. At the same time, the neuropathy has continued to worsen. The burning pain and numbness are spreading, and my headaches have become significantly worse. Because of the headaches and my existing cervical instability and vascular issues, further vascular imaging of my neck and brain may be needed to evaluate for additional compression. This week I am traveling back to Utah, where much of my specialty medical team is located, for my first two IVIG (intravenous immunoglobulin, made from pooled donor plasma) infusions on back-to-back days. These treatments will be given in an infusion center. My physicians hope IVIG may help address the antibody deficiency and potentially some of the immune-mediated inflammation and neuropathy as well. I have also connected with members of the React19 community who have experienced substantial improvement with IVIG. Their experiences give me some hope while also reminding me that everyone responds differently. Travel adds another layer of expense—gas, food, medical costs and the trip itself—but thankfully I will be able to stay with family, so lodging is covered. Another big change has been accepting that I need a motorized wheelchair. I fought that reality for a long time. I can no longer make the short distance to our mailbox or walk through a grocery store. Buying the chair felt like admitting something I wasn't ready to admit. But it has also given something back to me. Special thanks to Kelsey for helping me see this and allow me to test drive your wheel;) I can be outside with Brew, Greg and Kai. I was able to accompany Kai on his first day of school. Those moments matter more than I can explain. The chair represents loss, but it has also allowed me to participate in pieces of my family's life again. I also want to give a very honest and objective update about the treatment I underwent in Japan, particularly for people who may currently be considering going. Before I left, Dr. Jordan Vaughn, my naturopath Dr. Costa, and my immunologist Dr. Jones intentionally ordered extensive laboratory testing so that we would have objective data to compare before and after treatment. Relevant testing was performed before Japan on March 18 and July 15, 2026. Post-treatment testing was performed after my return on August 25, with additional redraws on September 10 when several specimens—including MMP-9—could not be adequately processed from the earlier draws. One of my goals in going to Japan was not only to get better, but to determine whether the treatment produced measurable changes that might help validate the program and potentially help other people with Long COVID. So far, the opposite of what I hoped to document has occurred. My post-treatment testing has not shown the objective improvement I hoped to see. Instead, several inflammatory markers we were following before treatment have increased, and several cytokines that had previously been below the laboratory cutoff are now elevated. For example, comparing the most recent valid pre-treatment values from July with my September 10 post-treatment testing: • IL-12 increased from 4.7 to 9.9 pg/mL. • IL-5 increased from <2.1 to 3.3 pg/mL and is now elevated. • IL-17 increased from <1.4 to 1.7 pg/mL and is now elevated. • TNF-alpha increased from 6.0 to 16.0 pg/mL and is now elevated. • TGF-β1 increased from 12,367 to 33,676 pg/mL and is now above the laboratory reference range. • MMP-9, which was already elevated at 1,283 ng/mL before Japan, increased further to 1,519 ng/mL. Some of the planned July 15 and August 25 specimens were insufficient for certain tests, which is why the September 10 redraws were necessary. For those markers, I am comparing the September results with the most recent valid pre-Japan measurements rather than pretending we have data points that we do not. These are not simply changes in how I feel. They are measurable laboratory findings that my medical team and I intentionally tracked before and after treatment. At the same time, clinically, my neuropathy, burning pain, numbness, headaches and overall function have continued to decline. I want to be equally clear about what these results do NOT prove. They do not establish that the treatments in Japan caused these changes. Long COVID is complicated, laboratory values can fluctuate, and there are many potential variables. What I can say is that my own objective pre- and post-treatment data have not demonstrated the improvement I went to Japan hoping to document. In several areas, the measurable trend has instead moved in the opposite direction. The treatment itself was also not without significant risk. My central-line placement resulted in a pneumothorax requiring hospitalization and a chest tube. Since August, I have personally spoken with several patients who initially experienced improvement after treatment and later experienced relapsing symptoms, in some cases within only a few months of completing treatment. This is information I wish I had understood more clearly before making my decision. Knowing what I know now—including my clinical course, the complication I experienced, the pre- and post-treatment laboratory findings, and what I have since learned from other patients—I would NOT make the same decision to go. I feel a responsibility to say that clearly for anyone currently considering this experiment. I believe patients deserve to understand not only the possibility of improvement, but also the procedural risks, the uncertainty surrounding durability of response, and the possibility that symptoms may return even after an initial improvement. I went to Japan hoping not only to improve my own health, but also to gather information that might help other people suffering from Long COVID. I genuinely hoped my pre- and post-treatment testing would help validate the program. Being transparent when the results do not support what I hoped to find is part of that responsibility too. Meanwhile, Greg is still unemployed following the layoffs that affected him and his team. He is looking for work every day—networking, contacting leads, applying, and doing everything he can to find the right opportunity. It has made an already difficult financial situation even harder. I know these are difficult economic times for so many people. I never take a donation, share, message, prayer, or offer of help for granted. We are deeply grateful. I certainly don't want anyone to suffer hardship because of me. If anyone has unused airline miles or travel points and would be willing to use them toward one of my medical trips, that could also be tremendously helpful as travel to specialists continues. For anyone who prefers Venmo: @april-amber-theisen Go Fund Me: gofundme.com/f/help-april-ac… gofund.me/b7f2c2cb6 Thank you for continuing to stand beside our family. I am still searching for answers, still following the data—even when it isn't the answer I hoped for—and still hoping that some combination of science, persistence and time will give me more of my life back. @TheRebelPatient @DrMaryBowden @Burning_mama47 @kelseyshields08 @evanfgeorge @EdogawaPatients @KenCaptn20114

Well, if we must have a BC election, the first priority is to get @Emily_Lowan a seat. She's the only real opposition to corporate capture in BC, which both the BC NDP and the right-wing (whatever their damn party is going to be) are willing participants in. #bcpoli

With this - and every fall/winter relapse - the underlying issue is immune dysfunction and specifically immune activation. I’ve tried pretty much everything (and some things help), but has anyone found anything effective in calming down an overactive immune system in ME? Thx

Any women with Long Covid who have high dimer and are on HRT for symptoms of menopause? I’m trying to get my gyne to prescribe it; no go so far.

Québec City, Canada 🍁🇨🇦

A message from Christina Applegate 😷

RT @Rocket57: This is really good. Well done @Mark_Ungrin

She said she wanted the second line of her obituary to acknowledge her role as a shop steward for SAG-AFTRA, the union that represents NPR's editorial workers. She wanted the line to say that her "proudest achievement" was helping convince NPR to increase its paid parental leave.

Chantal Hébert: "In this country, we tend to go in cycles—10 years of progressive Liberals, then Conservatives. We were due for a change in the cycle. The only thing that happened is that that change in the cycle towards a more conservative government happened with a Liberal PM."

“Unfortunately, when Covid hit, there was very little attention paid to aerosol transmission as a means of Covid infecting from one person to another,” Ungrin said. “Warnings were provided by scientists, engineers, occupational health and safety...(1/🧵) ctvnews.ca/calgary/article/o…

Proper sequence of greetings demonstrated by the finance minister of Canada 🐱

Went out in the kayak for 1/2 hr today. I tried to take it easy. Once I got in I realllllly wanted to just paddle as fast and as far as I could, but I stuck to the shore and tried to keep HR low. Being in the kayak - even briefly - is way better than not. Take that Long Covid!

I finished my 20th day of Paxlovid on Sept 15th. Tested negative on 16th. But I'm rebounding and tested positive today 9/18. I'm symptomatic and getting worse. I am immune deficient, so there's no reason to believe my immune system will fight back. I have 10 days of Paxlovid left and a 5 day course of Xocova/ensitrelvir. I've never tried Xocova. I have been taking Thymosin alpha 1 every 3 days. What should I do? 🤒

Manitoba, you’ve changed your clocks for the last time. We are just going to stay on summer time a.k.a. Central Daylight Time, a.k.a. The time it is right now. What does this mean for Manitobans? No more changing clocks twice a year. More evening daylight in summer time. More light for your drive home from work in the winter. Less disruptions to sleep and routines. No more springing forward or falling back. So this November 1st, the times they will NOT be a changin’.

I am trying to find a place to live with another covid safe, still masking person. My dm’s are open.

Just realized this “associate member” status also gives the UK a way to re-enter the EU in a way that might be less embarrassing.