Articles on the release of the IOM report

ahimsa

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I liked this bit at the end of the Al Jazeera America article:
The report’s million-dollar price tag can seem quite high if you consider that annual federal funding for CFS is about $5 million. In 2014 the disease ranked near the bottom of a list of 244 research areas and diseases funded by the National Institutes for Health — right below hay fever, which received $6 million.
I think most patients will agree that "WE NEED MORE FUNDING" is an important message! And this gets the message across pretty well.

(Note to mods - was not sure where to put this comment, feel free to move it if should be somewhere else)
 

Ecoclimber

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At least in many of the articles concerning the IOM report in the major news outlets, they did a nice feature workup on Laura Hillenbrand with ME/CFS legitimizing our disease. She is famous, everyone respects her as a leading author with regards to her bestsellers status and the movie productions that are based on her books. Not every bestselling author has a movie made from their books. Incorporating her condition in their articles gave it a celebrity status that will not be easy to dismiss and will be picked up hopefully by other media groups!.
 
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Helen

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RL_sparky

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“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives,” said Dr.Jose Montoya, an infectious disease specialist who helped establish a chronic fatigue syndrome team atStanford Universitya decade ago. “For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words.”

http://www.sfgate.com/health/article/Fatigue-syndrome-validated-by-influential-group-6074054.php

Plus a comment from one of our members:
"Susan Kreutzer, a Danville resident with the syndrome, said she’s not enthusiastic about the proposed new name and hasn’t had time yet to read and digest the full report. But in a way, she said, the content of the report doesn’t matter as long as it leads to more funding for research and support for patients".
“What I want to see is someone in Congress get pretty riled up by this report — have them see how many people are affected, how these people are really ill, how they’ve been mistreated,” Kreutzer said. “I’d just like to light a fire. I don’t know if this report will do that, but I suppose it gives us some ammunition.”
 
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Iquitos

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Just to add, I don't much like the name but having the word disease in it is so much better than syndrome. It warms my heart to see so many articles published on one day.
Yes, it's amazing how public service announcements to educate the public CAN be done, if only the government organization WANTS to educate the public. This is something the CDC could have done 30 years ago but chose to obfuscate instead. I just hope we can keep up the momentum, that this isn't just our 15" of fame.
 

Sidereal

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I wouldn't call them "bad" for the most part. Just a bunch of idiots whose food intolerances and thyroid problems were misdiagnosed, so are certain that they know the "cure" for SEID.
To be honest, those are my least favourite comments. There are some people out there who spam every article on ME/SEID with their bitter tale of woe of misdiagnosis. Some post the same comment over and over again; I can recite their medical history from memory at this point. Then there's the "IT'S ALL LYME DISEASE!!!" brigade.

I do feel sorry for people who were misdiagnosed and suffered without adequate treatment for years but posting your heroic story of overcoming hypothyroidism or celiac disease or whatever just serves to strengthen the perception amongst skeptical physicians and the lay public that this is a trash heap diagnosis - where people are merely "parked" as they await a real diagnosis - as opposed to a bona fide disease.
 

Sing

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To be honest, those are my least favourite comments. There are some people out there who spam every article on ME/SEID with their bitter tale of woe of misdiagnosis. Some post the same comment over and over again; I can recite their medical history from memory at this point. Then there's the "IT'S ALL LYME DISEASE!!!" brigade.

I do feel sorry for people who were misdiagnosed and suffered without adequate treatment for years but posting your heroic story of overcoming hypothyroidism or celiac disease or whatever just serves to strengthen the perception amongst skeptical physicians and the lay public that this is a trash heap diagnosis - where people are merely "parked" as they await a real diagnosis - as opposed to a bona fide disease.
I couldn't agree with you more! Some people I meet do the same thing in a storm of reaction, projection and misinformation. One of them is even a close family member! What is it about our type of illness which seems so utterly intolerable to some people? I got completely sick of the "It's all Lyme disease" (thyroid, B-12 deficiency, gluten intolerance,) crowd too. Trying to reason with these people is usually hopeless, though there do seem to be a few who are teachable. But with most of them, I immediately shut the topic off, and in many cases have to keep my distance afterwards.
 
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