Todd is 💯 right! We can’t allow “performative patient engagement” to safeguard egos. Too much time has already been wasted and too much suffering continues to be at stake.
My thought as a clinician and researcher who has collaborated with patients for a long time is patients definitely aren’t leading the work if it’s not safe enough to ‘say it plainly.’ And if it’s not safe enough to ‘say it plainly,’ they may not even be fully informing the work.
You never grasp just how sick someone can become until you witness severe ME/CFS. At my worst I spent a month blindfolded with ear defenders, lying still, able only to sip water and take small amounts of food when I could digest. And others endure way worse.
Severe and very severe ME/CFS patients are the sickest patients I’ve ever seen - even compared to septic transplant or end-stage cancer patients. The unrelenting suffering and lack of research or definitive treatments puts severe ME/CFS on another level. Nothing compares...
Guess I am already retweeting this. It is a scientist’s privilege to be given funds and patient samples to work with. It bears serious responsibility. It necessitates accountability, transparency and receptiveness to argument. Outcomes for patients are the impetus. Not pride.
Mandatory viewing for all medical researchers!!! youtube.com/watch?v=S3SSca…
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Building Gold Standard Patient and Public Involvement - DecodeME...
UC health element (LCWRA) being targeted for "employment support" isn't about "barriers to work" we need to move away from this circular convo & acknowledge that "some people cannot work" & give it equal attention. Its seems to be a bit of a block with many people. #CareNotCuts
This lie about ME services across England being inconsistent needs to be challenge. There are no services for ME/CFS in the country. There are no specialists, no beds, no service for severe patients whatsoever. Most ICBs didn't even respond to government request on what they had
The fundraiser is moving further along, and I want to thank everyone who donated and shared. Please keep pushing a bit more if you safely can. We are almost there! Thank you! 🙏💙
Das Fundraising des Zeit-zum-Hinschauen Teams, das die ME/CFS Spenden Gala organisiert, geht in die Zielgerade. Wer kann und möchte und denkt, dass sie wichtige Arbeit leisten: bitte spendet oder teilt den Aufruf. Jeder Euro zählt und fließt direkt in den Aufbau einer…
Tomorrow marks the start of the Forbes Middle East Healthcare Leaders Summit, presented by PureHealth. On November 18 & 19 at Emirates Palace in Abu Dhabi, the region’s top healthcare experts and changemakers will gather for two days of transformative conversations, innovation…
Upcoming Medicare Changes May Affect Local Gastroenterology Care Starting 2026 #Medicare #Congress #Healthinsurance share.newsbreak.com/fytboh3z
What has helped you the most with #Pots #PosturalOrthostaticTachycardiaSyndrome ? I take Ivabradin 2x5mg daily but it seems like it doesn’t work. I was moderate in summer but now I’m severe again with horrible pots symptoms but same mg as in summer so maybe I need something else?
Missed the 2025 EURETINA conference in Paris earlier this month? Catch the most important announcements and exciting expert insights through our comprehensive coverage from this year's meeting. Read now: hubs.li/Q03TdrXH0 #EURETINA #EyeCare #Retina
ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. meres.uk/apply
Was inactive due to personal health reasons but I am heartbroken to be back to express my deepest condolences over the loss of an incredible human and advocate @leslieleeiii If you can afford to, please donate to his gfm to cover the cost of the funeral gofundme.com/f/lleeiii/cl/o…
British Association of Clinicians in ME/CFS has a new therapy guide. Graded Exercise is out and "Pacing up" is in. No longer treating de-conditioning, now its dysregulation. Similar exercise therapy different naming. The only thing available UK clinics. bacme.info/wp-content/upl…
Imagine that you have a pretty heavy new and chronic illness that has changed every aspect of your life. Now imagine that you have to piece together how it works based solely on the commentary of strangers online. #MEAwareness
Let’s talk about what’s changing—and who’s driving the change. We’re excited to unveil the speaker lineup for this year’s Forbes Middle East Healthcare Leaders Summit, presented by PureHealth, where the future of care takes center stage. Gain expert-led insights on medical…
Still can’t sleep after trying every hack online? It might be your circadian rhythm, your body’s natural clock. Learn how sunlight and smarter habits can help you get a better night's sleep. Join us at Emirates Palace for the Forbes Middle East Healthcare Leaders' Summit,…
New Ron Davis and David Systrom video on OMF talking to the two theories of the disease. Nothing really new from Ron. Systrom finding mitochondria numbers are down in skeletal muscle along with electron chain impairment. youtube.com/watch?v=KILxrv…
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An Interview with Ron Davis, PhD, and David Systrom, MD: Low Oxygen,...
In the ATTAIN-1 phase 3, randomized trial, the use of orforglipron, an oral glucagon-like peptide-1 receptor agonist, led to significant mean body-weight reductions in patients with obesity, as compared with placebo. Full trial results and Research Summary:…
Why Large Language Models Forget the Middle: Uncovering AI’s Hidden Blind Spot buff.ly/P4R022Q v/ @UniteAi #GenerativeAI #AI Cc @DeepLearn007 @EvanKirstel @marcusborba @dinisguarda @BetaMoroney @asokan_telecom @ahier
The wait is almost over. The 4th edition of the Forbes Middle East Healthcare Leaders Summit, presented by PureHealth, is coming to one of Abu Dhabi’s most inspiring venues—Emirates Palace. Join us on November 18 & 19 for two days of transformative conversations, future-focused…
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