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Millions Missing Coverage

Never Give Up

Collecting improvements, until there's a cure.
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The millions missing articles have begun.

http://www.mercurynews.com/opinion/...ndrome-victims-2-1-million?source=infinite-up

Anyone care to respond to this comment, @Sasha?

""My daughter, age 21, and the other 2.5 million Americans suffering from the neuro-immune disorder called M.E./CFS (myalgic encephalomyelitis/chronic fatigue syndrome), have an abundance of grit."
I have no doubt this parent is telling us what difficulties his daughter has..However, how does he kNOW she has an immune disorder..what physical evidence is there? In what way is society at large supposed to rally behind something for which there is a "diagnosis"...but not a cure. Just what are "we" supposed to do for these people? What is it we are going to be "educated" about?"
 

Sasha

Fine, thank you
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The millions missing articles have begun.

http://www.mercurynews.com/opinion/...ndrome-victims-2-1-million?source=infinite-up

Anyone care to respond to this comment, @Sasha?
Anyone/everyone can respond to these comments - or, better still, talk over their heads to reasonable people.

Think about what ACTION we want - donations to END ME/CFS, signatures to @marygelpi's petition...

Here's my article on how to do it:

http://phoenixrising.me/how-to-comment-on-online-news-stories

I'm not doing too well today so not going to be able to do any of this myself.
 
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""My daughter, age 21, and the other 2.5 million Americans suffering from the neuro-immune disorder called M.E./CFS (myalgic encephalomyelitis/chronic fatigue syndrome), have an abundance of grit."
I have no doubt this parent is telling us what difficulties his daughter has..However, how does he kNOW she has an immune disorder..what physical evidence is there? In what way is society at large supposed to rally behind something for which there is a "diagnosis"...but not a cure. Just what are "we" supposed to do for these people? What is it we are going to be "educated" about?"[/QUOTE]



We KNOW his daughter has a neuroimmune disorder because the specialists and virologists and scientists who have been working on ME/CFS for decades have designated it as that. I'm surprised to hear you question why "society at large" should rally behind a disease with no cure. That's the whole point. That's EXACTLY why we rally behind a disease and pour research funding into it, so that we can find treatments and an eventual cure. The burden of the disease far outweighs the money we are putting into curing it. (Billions lost every year in US due to loss of productivity, i.e.. People having to leave work because they are too sick) I don't remember hearing anyone say "why would we pour money into cancer research? There's no cure!" Same for malaria. Or the Zika virus. Or basically all infectious diseases of which the NIH is still urgently researching. Not having a great understanding for the disease is no reason not to dive in deeper to find its cause. Our lacking knowledge is a direct result of exactly what we're asking for: research funding. Because there has been so little, there has been an insane lack of progress the last THREE decades, and so we're finally rallying together to try to change that. We are sick people who actually want to get back to work, to our families, to our life before illness. I hope you can understand that.. It's been hard being sick since age nine and having zero hope of a cure because the gov't has chosen not to show interest in my disease. Does that make sense?
 

Sushi

Moderation Resource Albuquerque
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STAT is a health and science publication of the Boston Globe newspaper.
Tethered to my bed, I’m still fighting the stigma around misnamed ‘chronic fatigue’
By RIVKA SOLOMON
MAY 24, 2016

It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t. Decades later, I’m still living with bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon both my career in international relations and my social life....
Rivka is a member here--RivkaRivka.
 
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@Rivka
Dude, that article was great. Thank you for writing it and helping shed some light. Just the fact that your two other roommates recovered but for you it triggered something major, I don't know, it seems to say something about possible genetic predispositions for it. Otherwise, all three of you would be in your state, you know?

Also, I commented and I admit, I kind of fed the troll. I just couldn't allow her ridiculous comment to sit there unresponded to after such an awesome piece. So I responded.. But I helped inform her and used some of @sashas tactics! I know it's not going to change her mind but I couldn't help it, I'm so sick of comments like that.

Anyway, GREAT JOB! it was really well done.
 
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Disabled former teacher campaigns for disease research
By Naomi Whidden


Posted May. 23, 2016 at 7:00 AM

A local mother and former high school teacher is rallying support in the state capital this week as part of a national campaign calling for more government research for a debilitating chronic disease.Lauren Saikkonen is a disabled resident in Jacksonville, and recently became interested in raising awareness and support for Myalgic Encephalomyelitis (ME), or more commonly known as Chronic Fatigue Syndrome (CFS), after she was diagnosed with the illness six years ago at age 26....
http://www.jdnews.com/news/20160523/disabled-former-teacher-campaigns-for-disease-research
 
Last edited by a moderator:

Sushi

Moderation Resource Albuquerque
Messages
18,621
Likes
30,746
Location
Albuquerque
STAT is a health and science publication of the Boston Globe newspaper.
Tethered to my bed, I’m still fighting the stigma around misnamed ‘chronic fatigue’
By RIVKA SOLOMON
MAY 24, 2016

It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t. Decades later, I’m still living with bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon both my career in international relations and my social life....
Rivka is a member here--RivkaRivka.
This has been reprinted in Business Insider. @RivkaRivka