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Kati Debelic
@Katiissick
Sick with myalgic encephalomyelitis since Nov 2008. Tweeting about health care for neglected diseases. #patientexperience #ptexp
Vancouver BCBorn 1969Joined June 2008

Kati Debelic’s Tweets

What a failure of our medical “system” that people go years with PEM/PESE and no one puts the pieces together for them. I can’t even conceive of the othering my patients have to live with daily but I’m reminded every time a patient cries when we simply discuss the science of PEM.
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If applied to the Exercise for CFS review, this new tool would exclude #PACETrial So why is this review still being used to defend a harmful treatment? ; ; ;; ; ; ;
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Even if this tool works, it's pointless unless applied to studies included in published reviews still used to inform patient care For example .@cochranecollab's tinyurl.com/5uahfs9a is the last haven for the #PACETrial and allows the harm to continue onlinelibrary.wiley.com/doi/10.1002/jr
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Hello, #LongCOVID! There's a protest TOMORROW, around rights for people with infection-associated diseases like #MECFS & #LongCOVID! Do you have a heatsink of rage you'd enjoy directing to positive change? See actions you can do FROM HOME, here:
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I urge PA Congresswomen and to meet with these protesters. You’ll be treated with respect and learn about the need for action on Long COVID and Myalgic Encephalomyelitis/chronic fatigue syndrome syndrome and how closely related these conditions are
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Alerting journalists/others to this event tomorrow at 12p at the White House asking for better progress for Long Covid and ME/CFS. It’s not easy for these people to show up to protest, so especially important to take notice of it. twitter.com/MEActNet/statu…
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Maeve would have been 28 today. Her life was taken last year by the cruel disease myalgic encephalomyelitis (ME) which doctors fail or refuse to understand. This picture was taken a decade ago on her 18th birthday ❤️💔
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Medical teaching has been that if an infection is no longer detectable, the person shouldn't still be sick. That was never 100% true. Now, the emergence of #longcovid is making it much harder to dismiss the ongoing symptoms as psychosomatic. #mecfs #medtwitter #chronicillness
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The emergence of long COVID was no surprise to researchers who study the post-viral condition myalgic encephalomyelitis/chronic fatigue syndrome, because the same set of symptoms has arisen after many other viruses. wb.md/3pGX8ud
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On Fathers' Day. To dads with children trapped in the horrific disease called ME/CFS, from dads devoted to finding a cure: We are with you. Every day I wake up thinking this might be the day someone finds the key. We work for the carers as much as for the patients.
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Professor Brian Hughes on Medically Unexplained Symptoms: “It took GPs a median of just 12 seconds to decide that a patient’s symptoms were psychosomatic. In 50% of consultations, GPs had decided that symptoms were psychosomatic before the patients had even started talking.” →
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2/ Feel free to answer one, a few or all questions, I’d be grateful for any feedback. You can feel free to send as DM if you prefer, but answers may inspire many groups to start their own journal club locally, and encourage understanding of #mecfs research
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Less than 1% of people with Long Covid reported improvements with physical activity, whereas nearly 75% report worsening symptoms. So why are there STILL researchers trying to explore physical activity as a genuine treatment? I'd love to see the rationale 🤔
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🚨 A new study once more suggests that physical activity programs are detrimental for most #LongCovid patients (just as they are for #MECFS). 74.84% of patients said it worsened their symptoms. Only 0.84% said that it improved them. mdpi.com/1660-4601/19/9
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And if you appreciate my work, consider making a tax-deductible donation to UC Berkeley this month to support the project, which examines problematic research in ME/CFS, so-called "medically unexplained symptoms" and long Covid: crowdfund.berkeley.edu/project/31347
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Here's my take on this exercise study: virology.ws/2022/04/23/tri
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