Discover and read the best of Twitter Threads about #MAIMES
Most recents (3)
The chronic collaboration has been created in response to the recent refusal of NICE to publish the much awaited ME/CFS guideline. Many #pwME would like to protest this decision along with the years of medical neglect & mistreatment they have faced 1/5
meaction.net/2021/08/19/sig…
meaction.net/2021/08/19/sig…
Due to the psychologisation of #MECFS after the scientifically flawed #PACEtrial, part funded by the #DWP btw. Not only has this caused medical abuse in patients with #ME (#MAIMES) its having a huge impact on the treatment & further investment of many other patient groups 2/5
From people living with #ChronicPain & #MUS to #Fibromyalgia & #LongCovid. There are literally #MillionsMissing globally & thousands of #Disabled #pwME & #SevereME in the UK who are desperate for their voices to be heard, represented, just taken seriously in many cases 3/5
If you or someone else has been harmed by GET please share on here. This is from someone on FB.
"My daughter had GET and her health deteriorated. She needed to use a wheelchair. Didn’t manage school and was unable to complete her education."
#GETstories
#GETharms
#MECFS
"My daughter had GET and her health deteriorated. She needed to use a wheelchair. Didn’t manage school and was unable to complete her education."
#GETstories
#GETharms
#MECFS
Story above continues: "just also like to add that the physiotherapist stopped GET when she saw my daughter deteriorating and the paediatrician agreed with her decision.
#GETstories
#GETharms
#MECFS
#GETstories
#GETharms
#MECFS
We kept activity charts when doing GET and the physiotherapist could see from the charts the harmful impact exercise was having on my daughter. The charts showed a clear pattern which was much easier to visualise than if we had just talked about it"
#GETstories
#GETharms
#MECFS
#GETstories
#GETharms
#MECFS
💥💥💥 BREAKING NEWS! 💥💥💥
There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
