– First - I am NOT holding my breath about the report IOM will produce. I have
significant concerns about the process and what may come out of it. –
On a different IOM note - in more than one place I have seen criticisms of the patient/advocate panel at the May 5th IOM meeting for telling illness stories 'yet again when they've been told so many times before.'
But it is important to note that the IOM agenda listed the focus of the patient/advocate panel as
“
Patient and Advocate Panel: Challenges of ME/CFS patients when interacting with the health care system” (
http://www.iom.edu/~/media/Files/Activity Files/Disease/MECFS/Open Session Agenda_04 17 14.pdf )
Each of us has had (far too many awful) encounters with the healthcare system. If providing specific input about some of our experiences to the IOM committee can help break that cycle, I think that could help us all.
Additionally IOM provided the following questions to panel participants
:
“Ø Please tell us about your (or your family member’s) experiences in seeking for care for ME/CFS.
- What symptoms brought you to your healthcare provider?
- What type of healthcare provider diagnosed you?
- How long did it take to get diagnosed?
- What types of obstacles did you encounter in getting a diagnosis?
- How have your symptoms changed over time?
Ø In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?”
So my presentation addressed
onset and what took us to the healthcare provider (symptoms)
baseline
cognitive impairment and post-exertional collapse (post-exertional malaise)
obstacles
symptoms 2014
healthcare providers NEED to know
I wove the thread of cognitive impairment and post-exertional collapse (aka PEM) through my presentation to demonstrate that I think that as a first step healthcare providers NEED to know that cognitive impairment is debilitating, frightening, and frustrating and that they NEED to know that post-exertional collapse is debilitating, pervasive and can be triggered by cognitive and/or physical exertion.
Yes. I n my presentation I told yet another patient story, yet another time. I did so while trying to answer their questions so that I know they have been given at least some accurate information (since I don't know what material they are reading as part of their literature review).