, 7 tweets, 6 min read Read on Twitter
1/ I am one of the admins of a caregivers facebook page. I'd like to help others find the info they need to be good caregivers. I am not slanting this toward anything specific, though I am clustering around: #EDS, #EhlersDanlos #ME #CFS #Fibromyalgia #Fibro
2/ I know some of you are: patient, caregiver or both. I'd love to hear the thoughts/advice you'd give a caregiver (please be clear about your role if you are comfortable doing so). Also, if you have websites you think are great too please share - some are listed below.
3/ @JanetDafoe I know has given a lecture and it is captured in this video. Maybe there are other resources you'd like to share?
4/ The Ehlers Danlos Society has this web page with 5 general tips (substitute #EDS for any other condition and I think they apply widely) ehlers-danlos.com/caring-for-som…
5/ Chronic Pain Partners offers a unique view in "A Not-To-Do List For Caregivers of Those With Ehlers-Danlos Syndrome" but again NONE are specific to #EDS and would apply equally well to #ME #CFS #Fibro chronicpainpartners.com/a-not-to-do-li…
6/ @ClevelandClinic has a general list on their webpage called "How to be a Great Caregiver to someone with a chronic illness" that applies to any chronic illness such as #EDS #ME #CFS #Fibro
@ClevelandClinic Also any RTs of the top item in this thread would be appreciated, in hopes of including those who aren't in my circle
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