Discussion in 'Advocacy Action Alerts' started by Sly Saint, Oct 1, 2019.
It was rewarding to hear Dr. Bateman acknowledge the improvements in UpToDate's ME/CFS content.
Ouuuu this is good!
Is this something I can read or listen to now that it's past? If so where? (Sorry to ask and not look, my searching abilities are limited right now.)
Thank you to Doctor Bateman for this and all you do!
Good timing to see this now. Tonight laying in bed debating whether to see and how to go about talking to a new potential primary care doctor especially with my records in the computer she'll see that definitely paint a false picture of me and will color her view of me.
Like many of us mistreated and misportrayed, I'm traumatized. I need to figure out how better to go about this, protect myself and to be an advocate too. I look forward to hearing (hopefully reading) what she has to say.
Thank you @Sly Saint for posting this.
It will be posted on their Youtube channel (not there yet)
You should definitely feel proud of that work!
video now on youtube (not sure why it says september?)
Premiered on 7 Oct 2019
I've just watched the talk.
Dr Bateman divided it into 4 topics under the heading 'Barriers to care':
- Ignorance (being uninformed)
- Nature of illness and lack of tools
- Financial constraints
- Immobility and illness severity.
Most of it was pretty obvious things we're all familiar with.
She mentioned information resources of various sorts.
The part I thought was most helpful for patients was about how to make best use of medical consultations and how to communicate with doctors. One example that stuck in my mind: if you have symptoms in a particular part of the body, describe the symptoms - what the symptom feels like - type of pain, weakness, what it stops you being able to do etc. Don't use words like 'inflammation'. That's a diagnosis, not a symptom.
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