cppedsa.bsky.social
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians about the Ehlers-Danlos Syndromes and related conditions.
https://chronicpainpartners.com
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We just learned it's also possible to get a virtual viewing ticket for $50 for those who can swing it.
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We're excited!
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Awesome! Thanks for caring about the needs of hypermobile patients. The more the merrier!
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Same experience. Hopefully my new doctor may be more open to it. I've wanted to try it for over ten years!
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Right? Nice to know about alternatives that might work for our pain.
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Cheers
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That wouldn't surprise us. It's not 1:1, but there is a statistically significant co-occurrence.
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You're welcome!
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I've worked with autistic folk for 18 years and I've seen so many that obviously have hupermobilty, and it isn't taken into consideration. The pain can really impact mental health and behaviour. I'm so glad this work is being done!
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Thank you! That's why we started this series. One of our team is co-authoring a book on the co-occurrence as we speak too.
It's time to see the whole health picture for our neurodivergent kin.
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So glad you liked it! And we agree, so many health issues for autistic folks of all levels and experiences are overlooked. We hope this helps.
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2/
“Study Finds No Causal Link Between Depression And Chronic Fatigue Syndrome: Recent genetic analysis reveals major depressive disorder does not cause myalgic encephalomyelitis/chronic fatigue syndrome”
evrimagaci.org/tpg/study-fi...
#MEcfs #CFS
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Glad to hear. It's on my "want to read" list - Jan.
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You might check with the Ehlers-Danlos Society then. Sorry.
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Dr Pradeep Chopra said they do help at one of the past EDS conferences. Sorry, not sure exactly which one. (2015? 2017?)
They allow us to stay mobile despite EDS.
You can access all after 2017 here:
www.ehlers-danlos.com/past-events/