The third (second open) IOM meeting May 5th

Cheshire

Cheshire

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Watching too. But I'm going to sleep, english with japanese accent is just too much for my brain!!
 
Nielk

Nielk

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This whole meeting just seems to me as a fill in - a puppet meeting to waste time just so that they can claim an open meeting with patient participation. Now they can check that off their list.
 
SOC

SOC

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Nielk said:
This whole meeting just seems to me as a fill in - a puppet meeting to waste time just so that they can claim an open meeting with patient participation. Now they can check that off their list.
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So did any patients actually participate -- as in talk to the panel? Or did we just get to "participate" by listening?
 
Nielk

Nielk

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SOC said:
So did any patients actually participate -- as in talk to the panel? Or did we just get to "participate" by listening?
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There was a panel of four. Two patients and two carers who each spoke for fifteen minutes. They also answered questions.
 
SOC

SOC

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Nielk said:
There was a panel of four. Two patients and two caters who each spoke for fifteen minutes. They also answered questions.
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Did they say anything helpful? Did they educate anyone? (Sorry, I was working through most of the meeting and missed it)
 
Nielk

Nielk

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SOC said:
Did they say anything helpful? Did they educate anyone? (Sorry, I was working through most of the meeting and missed it)
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Some were better than others. They gave a good account of what it's like living with this beast and the difficulties with finding diagnoses and knowledgeable experts.
 
Nielk

Nielk

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I was disappointed with the answered to what we should name the disease. I was very frustrated with the list opportunity to drive the point that we need a strict definition.
 
U

Undisclosed

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SOC said:
Care to extrapolate? :) Or do I mean explicate? o_O
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Well I guess it's the caliber of the presenters. We have some huge heavy hitters on our side, yet they had lightweight presenters that said nothing but the obvious. I appreciated the patients/caregivers that got up and told their stories but this has been done ad nauseum and really in the end doesn't seem to have any effect. It's a clusterflock. :confused:
 
D

Denise

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Kina said:
Well I guess it's the caliber of the presenters. We have some huge heavy hitters on our side, yet they had lightweight presenters that said nothing but the obvious. I appreciated the patients/caregivers that got up and told their stories but this has been done ad nauseum and really in the end doesn't seem to have any effect. It's a clusterflock. :confused:
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– 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).
 
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