Wednesday, March 22, 2017

A Biomarker for Chronic Fatigue Syndrome (ME/CFS)? Immunosignature

 
"It suggested that some sort of core immune reaction was taking place in ME/CFS."

Sign the Petition to keep long-term care

 
Repealing the ACA and slashing Medicaid would leave millions of families unable to afford in-home care.

This plan will make it harder for millions of Americans to afford long-term care -- whether at home or in a nursing home -- and eliminate incentives to keep that care high-quality and community-based. It puts everyone who needs care at risk.

Sunday, March 19, 2017

Getting It Wrong on Chronic Fatigue Syndrome - The New York Times

 
by Julie Rehmeyer and David Tuller
 
Critiquing the PACE trial,
 
"According to a 2015 report from the Institute of Medicine, now the National Academy of Medicine, even minimal activity can cause patients prolonged exhaustion, muscle pain, cognitive problems and more." 

Tuesday, February 14, 2017

30 Years -- Pearl Anniversary

Today marks two important dates – it's exactly 30 years since I got sick, and it's approximately the day I officially cross over into "living on borrowed time".  The day that I reach average life expectancy with this damn disease.
 
And in that 30 years, there has been no treatment found, no cure discovered.  The situation hasn't improved one iota.  Why?  Because the guys in DC who suffer from male pattern baldness give more research money to that than they do to this disease that actually makes life a living hell.  I wish I were joking about that statistic, but I'm not.
 
I've been sick over half my life and there's still not a damn thing they can do to make my life any better.  I can't even get charity help because I have the wrong diagnosis.
 
And then people wonder why I lost my essential optimism?  You can't wake up every day for 30 years saying hopefully "today is the day they're going to find a cure!" and go to bed every night, sighing "not today", without realizing that thinking positive is useless.  It doesn't matter how much I follow the instructions to think positively; if the necessary research isn't being funded, they're not going to find the cure.  It doesn't matter how much I think positively that "today is the day that some friend will get an attack of guilt and offer to help" when 30 years of patiently waiting for my friends to mature enough to think of someone other than themselves has produced zero results.
 
And what little money is allocated to research is often wasted looking into things that have nothing to do with this disease or have already been disproved.  That 105 fever was not psychosomatic.  That blood test 10x normal proves it's not depression.  But, like every disease that affects more women than men, male doctors find it easier to write it off to psychiatric reasons than to figure out what's causing the problem.
 
 

Monday, January 23, 2017

Woo won't cure this

For all of you who've fielded "helpful hints" from uninformed people....

http://modernliberals.com/your-internet-woo-not-cure-medical-problem/

I especially love the arguments from people who insist that something that didn't work for you when you tried it already will work now because this time THEY are the one who suggested it.  Or that it didn't work because you used a reputable, clean American brand, instead of the herbs they're pushing that are imported from a Third World country with no oversight or guarantee of purity.

Laws Chronically Ill Patients Deal With

http://modernliberals.com/stupid-laws-professional-patients-already-deal/