KirstyMar 2

I have many friends who live with #EDS #POTS #MCAS #Hypermobility #Hypermobileehlersdanlossyndrome and related #ChronicIllness conditions.
The conditions are not easy to live with.

News like this does not help 😣
https://www.rnz.co.nz/news/in-depth/588334/official-advice-about-ehlers-danlos-syndromes-and-hypermobility-spectrum-disorder-labelled-incredibly-damaging

Official advice about Ehlers-Danlos syndromes and hypermobility spectrum disorder labelled ‘incredibly damaging’

Doctors are divided over treatment for a rare disorder, but some living with it say the official advice is misleading.

RNZ
Show threadKirsty

They have responded to public outcry 👍

Health New Zealand has removed controversial recommendations that people suffering from a rare connective tissue disorder not be given certain treatments.
It follows criticism from patients and advocacy groups.

https://www.rnz.co.nz/news/national/588410/health-new-zealand-removes-some-new-advice-about-ehlers-danlos-syndromes-and-hypermobility-spectrum-disorder

#EDS #POTS #MCAS #Hypermobility #Hypermobileehlersdanlossyndrome #ChronicIllness
see above post

Health New Zealand removes some new advice about Ehlers-Danlos syndromes and hypermobility spectrum disorder

The new guidance published last week, and described as a review of current evidence, has been criticised by patients and advocacy groups.

RNZ
Mar 2 at 7:03amWeb
Show threadStrfnurfnMar 2
@AdminKirsty Wild that they just completely excluded hEDS! You have to wonder if an LLM was involved...