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The KnoW M.E. Challenge

Gingergrrl

Senior Member
Messages
16,171
For now, not at all. Maybe a footnote? I am going to need a lot more convincing. Maybe a phone call from the SEID Czar? (see p245 of Beyond ME/CFS) This is just unreal.

@OneWaySurvival I wanted to reply to you and couldn't find this thread! I agree that for now, you should not change the name of the challenge and maybe just make a footnote. I agree that this is unreal that we are trying to raise awareness of the name ME and then they officially change the name! What did you mean by (see p245 of Beyond ME/CFS?) Sorry I am slow sometimes :D.
 

OneWaySurvival

Senior Member
Messages
115
Location
USA
@Gingergrrl Oops, I should have just called it the IOM report! But literally, on page 245, it mentions a strategy of appointing a "SEID Czar" to ensure their message gets out to the masses. I thought maybe he/she would call me and ask me to change our challenge to the KnoW SEID Challenge. (kidding)

Uggh. This is making advocacy very difficult!

Do you think patients around the world could rally behind Ramsay's Disease as our own casual name (like Lou Gehrig's to ALS) while the powers that be sort out their ME/SEID/CFS mess? We are discussing this possibility on another thread.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
What did you mean by (see p245 of Beyond ME/CFS?) Sorry I am slow sometimes :D.

Don't worry, you're not all that slow, that's a lot of info packed into a short reference.

This is a reference to the full IOM Report, a shortened version of the title. The full, official title is "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"

On page 245 of this report there's a suggestion to appoint a SEID czar:
Designation of an HHS Point Person
HHS should consider appointing an individual to oversee the dissemination
of the new diagnostic criteria nationwide to health care professionals
(i.e., a “SEID czar” within the department). This person should have access
to the necessary resources and the authority to implement the dissemination
plans for the new criteria and address any questions or concerns that
arise. Having such an individual in place will also help demonstrate HHS’s
responsiveness to this issue.

I do think it's funny that folks would still call any official a "czar." :rolleyes: So, would a woman in this position be a czarina? :p

I've been online too long --- I'm getting a bit silly! o_O

Edit -- I was so long editing this that @OneWaySurvival beat me to the punch. :D
 

Gingergrrl

Senior Member
Messages
16,171
I do think it's funny that folks would still call any official a "czar." :rolleyes: So, would a woman in this position be a czarina? :p

I've been online too long --- I'm getting a bit silly! o_O

Edit -- I was so long editing this that @OneWaySurvival beat me to the punch. :D

Maybe a czarette? I also can't believe they are using that term. This whole thing is very surreal! Thanks to both of you for explaining this and I (obviously!) have not read the report itself yet. Still trying to get through all these threads!
 

Gingergrrl

Senior Member
Messages
16,171
@OneWaySurvival

@Gingergrrl Oops, I should have just called it the IOM report! But literally, on page 245, it mentions a strategy of appointing a "SEID Czar" to ensure their message gets out to the masses. I thought maybe he/she would call me and ask me to change our challenge to the KnoW SEID Challenge. (kidding)

I don't know... you still may be getting a call or a knock at your door from the SEID Czar (or Czarette)... :nervous:

Uggh. This is making advocacy very difficult!

I agree. My family and I were still going to make a video for the challenge but now not sure if we want to try to educate friends & family about the term M.E. if it is never going to be officially used in the U.S. Not sure what to do!

Do you think patients around the world could rally behind Ramsay's Disease as our own casual name (like Lou Gehrig's to ALS) while the powers that be sort out their ME/SEID/CFS mess? We are discussing this possibility on another thread.

I think this is very tricky and even if patients worldwide rallied behind "Ramsay's Disease" (and I am fine with the name personally) would it really do any good if the IOM, U.S. Govt, doctors, insurance companies, pharma, disability, etc, all used a different name? It would be really confusing, more than even now with ME/CFS/SEID. Literally nothing about this illness is easy... :aghhh: