In a statement, CBC told me: "After reviewing the interview, we concluded that it needed to be re-edited and re-posted to include further context and questions around the procedure and treatment Deacon experienced. That has now been done." Will update the story with this soon.

Our #LongCOVID journalism requires reader support — with your help, we can prepare our non-profit newsroom for whatever 2026 brings. Will you donate today and help us keep this vital work going? the-sick-times.fundjournalism.org/donate/

Day 3 of the @icancmeresearch.bsky.social conference is up as a live thread and now a brief writeup. simonspichak.beehiiv.com/p/day-3-of-t...

Thread for Day 3 of the @icancmeresearch.bsky.social conference. My attempt at simultaneously sharing on X and Bsky.

I'll be back live tweeting/skeeting the @icancmeresearch.bsky.social conference tomorrow. Will try to get it going on BlueSky AND X simultaneously. #ICanCME

I wrote about the approval of Leqembi for Alzheimer's in Canada for Being Patient. Compared to other countries, there's less transparency with the approval process. It took more than 2 years for regulators to decide. beingpatient.com/alzheimers-d...

And coverage for Day 1 of the #ICanCMEConference by the @icancmeresearch.bsky.social. Features a link to my live tweets. simonspichak.beehiiv.com/p/icancme-da...

Covering the @icancmeresearch.bsky.social live over on the other app. Will be posting a brief summary of the day's talks as well. x.com/SpichakSimon...

#ICanCME2025 is happening this week! This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far. And please be patient with us this week if we run into any issues. 🤞💙

I'll be doing asynchronous coverage of the ICanCME Canadian Collaborative Conference on #ME which is going from Nov 4 to 6 this week. Hope to share tweets and short summaries of the talks at the end of the day. icancme.ca/research/202...

Goober is running the bases! ⚾ 🦔

Earlier this week, the CBC broadcast an interview with Gill Deacon, discussing her Long COVID recovery using brain retraining. They didn't tell you the specific brain retraining program, the Lightning Process, has been accused of exploiting patients. simonspichak.beehiiv.com/p/cbc-flagsh... 1/n

Happy to share that I've been selected for the @nationalpress.bsky.social Rare Disease Reporting Fellowship. nationalpress.org/newsfeed/npf...

Story in Being Patient about Alzheimer's disease funding noting the decrease in the funding of number of new projects due, in part, to the number of multiyear funded grants from the National Institute on Aging. beingpatient.com/alzheimers-r...

Review of Charles Piller's book "Doctored" about Alzheimer's disease research. beingpatient.com/doctored-cha... 1/4

Alzheimer's research funding is back. But far fewer projects are getting funding. Thanks @jeremymberg.bsky.social for the insights. beingpatient.com/alzheimers-r...

CBC is platforming unproven pseudoscientific brain retraining programs for #LongCOVID. In reality, some people recover others do not, no matter what they try. This approach lays the blame on patients who don't get better because they're not trying hard enough.

As an overall note, people can say shit that sounds good but do absolutely nothing to improve people's quality of life. Take that into consideration on everything you hear.

For a story in @beingpatient.bsky.social, I'm looking to speak with #neurologists who've had healthy patients come to them because they believed they had Alzheimer's after taking a direct-to-consumer Alzheimer's blood test. DM me or get in touch at simon (at) beingpatient (dot) com

Working on a story for @thesicktimes.org about the quality, utility, and risks of exercise trials in Long COVID (and how often they mention/measure PEM). Looking to speak with anyone that's participated in these trials and experienced PEM/other negative side effects as a result.

Digital Cognitive Tests: How AI Tools Could Transform Alzheimer’s Diagnosis and Care beingpatient.com/digital-cogn... by @spichaksimon.bsky.social @beingpatient.bsky.social #Alzheimers #dementia #AI #ArtificialIntelligence

There's a suite of new AI-powered digital cognitive tests coming to market. The goal: Speed up the assessment and spot people who might benefit from more extensive testing sooner. My latest for @beingpatient.bsky.social beingpatient.com/digital-cogn...

Can antivirals against herpes treat early-stage Alzheimer's? At #AAIC2025, researchers presented data from a clinical trial showing no effect. My latest for @beingpatient.bsky.social beingpatient.com/cold-sore-vi... 1/6

Delayed Disability Benefit Leaves Canadians Struggling, Facing Bank Fees They Can't Afford Customers with TD and BMO are affected but it isn't clear how many or when the situation will be fixed. My reporting on the #CDB delay. simonspichak.beehiiv.com/p/canada-dis...

When researchers and press offices overhype their findings it can undermine trust and distort expectations for people living with these diseases. A few things I learned as a researcher and now a science journalist. A🧵 1/n

Though blood tests can't predict if a healthy person will get Alzheimer's, many people still want to know their risk. For @beingpatient.bsky.social I covered a recent study that looked at some of the complexity behind learning your risk. 1/n🧵 beingpatient.com/learning-alz...

Welcome to the era of vibes-based medicine! A new study in the Lancet eClinicalMedicine finds that exercise for Long COVID is an effective treatment - and they do that by using studies of people who didn't have Long COVID.

Coca-Cola used to have cocaine. 7-Up's original formula opted for the mood-stabilizing drug lithium. Now the mood-stabilizing drug is back in the news for a different reason - could it slow down Alzheimer's? At @beingpatient.bsky.social we cut through the hype. beingpatient.com/science-behi...

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration. New post at Absolutely Maybe .... 1/2 absolutelymaybe.plos.org/2025/07/31/s... #MECFS

🦔 🛞

🩸There are several dozen blood tests to help diagnose Alzheimer's on the market. When should doctors use them?🩸 At the @alzassociation.bsky.social International Conference, the association presented new guidance. My coverage in @beingpatient.bsky.social beingpatient.com/blood-tests-...

🧠 What have we learned about anti-amyloid drugs for #Alzheimer's since 2023? 🧠 My coverage of the real-world data presented at this year's @alzassociation.bsky.social International Conference (#AAIC2025) in Toronto. Read my coverage @beingpatient.bsky.social beingpatient.com/4-questions-...

My coverage of #AAIC2025 is live now on @beingpatient.bsky.social. What's good for the heart appears to be good for the brain, in this observational study. People taking multiple cardiovascular drugs had slower cognitive decline than those who weren't on any. beingpatient.com/aaic-2025-ca...

Had the privilege of being interviewed on the Still Here by @thesicktimes.org discussing my investigative story on Canada's Long COVID guidelines

What can a spider's brain teach us about Alzheimer's and neurodegenerative disease? One of the more fascinating pieces I had the pleasure of working on for @beingpatient.bsky.social www.beingpatient.com/what-can-spi...

My latest for @thesicktimes.bsky.social!

🧠The U.S.’s 35 Alzheimer’s disease research centers provide resources, and care while advancing research and drug trials. As of May, 13 no longer have federal funding. Teams are “scrambling” to continue their mission. My latest For @beingpatient.bsky.social www.beingpatient.com/alzheimers-d...

Several companies are testing out vaccines to prevent and treat Alzheimer's. For @beingpatient.bsky.social, I wrote about these new vaccines and what makes them different from the previous generation which failed in clinical trials. www.beingpatient.com/precision-pr...

Sometimes Goober likes to scratch himself like a dog 🦔

On March 15th, I gathered alongside a few dozen others in front of Queen's Park for #LongCOVID awareness day, organized by @cancovsoc.bsky.social. My thoughts on this moment and how policymakers are failing disabled Canadians🧵 simonspichak.beehiiv.com/p/a-reflecti...

Heading down for Toronto's #LongCOVID awareness event

Canadian researchers developing recommendations for treating #LongCOVID released these gems: 1. CBT along with pacing to treat post-exertional malaise 2. A 6 minute walk test to evaluate patients, even though it could trigger PEM CC @sunsopeningband.bsky.social @longcovidphysio.bsky.social

Sharing for visibility www.statnews.com/2025/03/03/n... Thank you @statnews.com

Still working on a story for @beingpatient.bsky.social looking at the impact of firings and cuts at the #NIH, #FDA and other agencies on Alzheimer's and dementia. If you've got any information/internal memos/emails you'd like to share -- get in touch on Signal at simonspichak.64

New: Trump-controlled NIH begins targeted purge of LGBTQ+ research. Citing "agency priorities," some grants were terminated on Friday, leaving researchers with uncertain futures. Two researchers share their stories: open.substack.com/pub/insideme...

At least two grants that were previously approved at the #NIH are now being rescinded because of the Diversity, Equity, and Inclusion executive order. These grants fund research looking at Alzheimer's disease risk and caregiving in the LGBTQIA+ population. bsky.app/profile/jace...

Just received notice that our grant was terminated. 5R24AG066599-03 TheRiseRegistry.org

I wrote about the rising levels of microplastics being found in human brains for @beingpatient.bsky.social. While the rise of microplastics is worrying, scientists aren't sure yet how these particles affect our health. www.beingpatient.com/rising-micro...

With the Ontario Provincial election looming - I looked at how the major political parties to assess their policies around disability, COVID and Long COVID. simonspichak.beehiiv.com/p/how-ontari...