IOM Report On ME/CFS To Be Released

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: IOM Report On ME/CFS To Be Released

Post by ChronicLyme19 » Mon 16 Feb 2015 2:35

duncan wrote:I fear we must move beyond symptoms.
Don't get me wrong, I totally agree we need to move beyond just symptom tracking, but we're not even using what we currently do have to the best of our ability.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: IOM Report On ME/CFS To Be Released

Post by velvetmagnetta » Tue 17 Feb 2015 1:01

What was wrong with calling it ME?

SEID is a terrible name! It's even worse than Chronic Fatigue Syndrome. Systemic Exertion Intolerance Disease (SEID) sounds contrived, hard to remember, and it sounds like you just don't feel like exerting yourself or something. I've known people with ME (at the time it was called CFS) and they are not well. That kind of fatigue needs a different name beyond the word "fatigue".

How could all those minds decide on such a bad name?

What was wrong with ME? We should all just keep calling it ME. Forget CFS. Forget SEID. It is Myalgic Encephalomyelitis, dammit, and if doctors can't see the inflammation, they're not using the right equipment!

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: IOM Report On ME/CFS To Be Released

Post by duncan » Tue 17 Feb 2015 12:12

There are many who would agree with you, VM. And there is an entire set of Guidelines, authored and signed by about 30 international ME experts, that was released two or three years ago, which also suggests embracing the name ME.

But government agencies like the NHS and CDC have chosen mostly to ignore these ICC Guidelines. Indeed, when the CDC/NIH hired the IOM to come up with a new name and definition, many ME/CFS experts opposed the move, and signed a formal letter of protest.

So, yeah, a lot of patients prefer the name ME. Lots of experts, too.

One compromise might have been "Ramsay's Disease", named for the individual who is generally credited with identifying the disease in the U.K. back in the '50's.

But, the IOM settled on SEID.

Whether that name will take hold remains to be seen.

Diagnostically, some are already complaining the IOM's solution does little to undo the damage and confusion spawned by vague CFS definitions created and endorsed by the CDC for 30 years.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: IOM Report On ME/CFS To Be Released

Post by velvetmagnetta » Tue 17 Feb 2015 14:34

Hi all!

While I was looking up all these terms associated with ME and Lyme - like orthostatic intolerance (OI) and post-exertional malaise (PEM), I found this awesome explanation of postural orthostatic tachycardia syndrome (POTS):


Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, and the Autonomic Nervous System
https://www.youtube.com/watch?v=faScrmgKcWg

It is a 2 hour long video with charts and graphs and beautifully clear images of pretty much all aspects of POTS and the causes behind it and just pretty much everything you ever wanted to know about POTS..and then some! But it is presented in such a clear and easy to understand manner by a professor of biology. Here is the description from YouTube:
What is postural orthostatic tachycardia syndrome (POTS)? What are its signs and symptoms and what are the mechanisms by which all body systems are affected? How does the autonomic nervous system normally function? What is the etiology, or cause, of dysautonomia? How is it diagnosed? Can it be treated? Join professor Carrie on a journey through the autonomic nervous system and develop a deeper understanding of autonomic function in general, and POTS in particular. This lecture is presented at the college level and is meant to be accessible for patients, family members, students, and medical professionals.
It is going to take me a while to get through the whole two hours, but man, is it worth it!

Come nerd-out with me! :geek:

Enjoy!

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