Saturday, March 7, 2015

One of Simmaron's 2 spinal fluid studies was published yesterday

One of Simmaron's 2 spinal fluid studies was published yesterday, showing a significant decrease in the cytokine IL-10 in spinal fluid of ME/CFS patients versus healthy controls. IL-10 moderates inflammation and autoimmune responses. The study was led by Dr. Sonya Marshall-Gradisnik of Griffith University in Australia and Dr. Daniel Peterson in Nevada. Please support Simmaron so we can keep the science coming!

http://www.hindawi.com/journals/mi/2015/929720/

The Reality of Chronic Fatigue Syndrome - NYTimes.com

Friday, March 6, 2015

SEID on Dr. Oz

Granted, Oz's audience is mostly female, but he's giving the wrong impression by repeatedly stressing that this is a disease that affects "millions of women" -- not "men and women".  Oz spent a scant 10 minutes on the topic, when we know it warrants a full hour (and then some).
 
Dr. Jennifer Caudell, who I'd not heard of before this week, got the name wrong, calling it Systemic Exertion Intolerance Disorder, when we've finally gotten IOM to upgrade us to a disease, but did stress "it's real, it is not fake, it is not made up."
 
Now we have criteria for diagnosing it.  (Actually, we've had diagnostic criteria for decades.....)  There are 5 questions to ask, and if you say Yes to 4 of them, you have SEID:
-- profound unexplained fatigue for 6 months
-- simple things exhaust you, like climbing one flight of stairs
-- unrefreshing sleep
-- brain fog
-- standing makes you worse
 
Rose, a patient, "nobody believed me", they thought she was crazy, and eventually she also thought she was just crazy, the doctors only wanted to give her anti-anxiety meds.  "Now I feel validated."
 
Researcher Dr. Ian Lipkin noted they've been at it since 1997, and most patients are not diagnosed for several years.  They're looking for biomarkers, unequivocal proof of ME/CFS/SEID (he used all three names), insight into why people are sick, and have come up with the idea of infections triggering something in the immune system.  Cytokines make you feel ill.  His group is looking in the blood, the mouth, the lower gastrointestinal tract for viruses.
 
Oz said what we've known all along, "women are often ignored".
 
Caudell explained that stress and anxiety comes with the condition (a result, not a cause, of being so sick and not believed).  She treats her patients with pacing -- a Not To Do List -- telling them to slow down and only select the three top things to do each day, not worry about the rest.  The best you can do is to manage the symptoms.
 
No, this was not even close to the best show Oz could have done on the subject.  Still, it could have been worse.
 
We should thank him for discussing SEID, while simultaneously telling him what could have been done better.

Thursday, March 5, 2015

Hidden Disability logo

 
 
 
The best I can do for everyone is to provide the file be email, if you write to hiddendisability@rogers.com. You will have to find a way to get the cards printed, either locally near you or online. Or, you can print at hone if you have the right equipment.
 
 
Me here: I would love to have this as a pin or even a T-shirt, if someone wants to set it up via Cafe Press or something similar.

Wednesday, March 4, 2015

Dr. Oz will be talking about SEID this Thursday

Dr. Oz will be talking about SEID this Thursday. Check your local listings for times in your area:

A Biological Basis for Chronic-Fatigue Syndrome - The Atlantic

 

 In a study published last week in the journal Science Advances, researchers found that people with chronic-fatigue syndrome showed measurable differences in their immune systems, a discovery that may enable doctors to diagnose the disease more quickly down the road—and one that sheds more light on its still-mysterious biological origins.

"It's been a highly stigmatized disorder. There's been many naysayers that don't even believe it's a biological disorder," said Mady Hornig, the lead researcher and a professor of epidemiology at Columbia University's Mailman School of Public Health.

... The paper is the second in recent months to describe physical differences linked to the disease: In October, researchers at Stanford University observed differences in the white matter of the brains of patients with chronic-fatigue syndrome, a finding that Drew Foster described in The Atlantic as "a social-legitimacy jackpot."

...  the National Institutes of Health have budgeted $5 million for research into chronic-fatigue syndrome for 2015, one of the smallest amounts on its itemized list of projected spending. (For context, headaches were allotted $24 million, and multiple sclerosis $103 million.) 

 

Happy Anniversary to me

27 years ago today, I got a diagnosis from an Ivy League doctor who assured me that "it has a name" and that he and other great minds were researching this disease.  I expected a treatment to be available in 5 years and a cure in 10.

So, here we are nearly 3 decades later, and finally there's something that looks like forward progress, including the information that the early years of the disease look very different from the later years. Any hope for an "easy cure" is gone – I've been sick a lot longer than the 5-year cutoff that researchers have been finding.  At this point, all I can hope for is that a new name finally gives it enough credibility that I can qualify for some sort of assistance, primarily volunteer drivers and cleaners who are trained to work with the disabled and not make things worse by creating heavy boxes "for you to put away!" that are placed in front of the doors and drawers I would have to open in order to put those things away.
Had Dr. Israel told me that I'd be waiting this long and still no treatment available other than palliative pain pills, I would not have been so excited when I called my uncle's birthday party that afternoon to announce that I finally had a diagnosis.  I know now that it's just another of those innumerable frustrating times where something desirable is dangled in front of me and then yanked away – a sadistic game to play.  It wasn't really good news that it had a name ... just the start of a long painful unproductive experience.