Saturday, October 27, 2012

Check out Chronically Screwed.


When I seem bitter, insulted and angered by the suggestion of CFS/ME being a mental illness, it is not because I don't believe that mental illness is a "real" illness.


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My sentiments exactly.  Several people close to me have depression and other mental illnesses.  Anti-depressants work fine for them.  They just make me sicker because I don't have depression. 

For example, cortisol levels are off in one direction for depression and the opposite direction for CFS.  Treating my cortisol level with something intended for depression will simply send it further out of whack.

Exercise will make those with depression feel better; it'll make a person with CFS feel worse.  When I took my doctor's advice to take a walk every day, every day I collapsed into bed longer after that walk, until one day I couldn't stand up at all -- I'd run myself into energy bankruptcy, and crumpled to the floor when I tried to get out of bed.  You'll never find a depressed person crawling to the bathroom because they can't stand; most CFS patients have that experience at least once.

Continuing to class CFS as a "mental illness" allows them to avoid doing the research into physical causes that would find the proper and appropriate treatments that would get us back to work.  Because we can't work while extremely sick, that provides further support for the misguided argument that we are "lazy".  I know lazy people -- they won't get off the couch.  They definitely won't get up and do things that push them to the point of collapse.  I used to clean till I collapsed, till I read a few things about CFS that scared me -- long-term physical consequences of overdoing.  Now I keep my enthusiasm under control; I do what I can, but I don't push it.  As a result, my health has been steadily improving instead of going further downhill.

ME, CFS, & Fibro Patients Against Psychological Profiling

New FB group! ME/CFS/Fibro Patients Against Psychological Profiling

Please share this far and wide! I just started this group on Facebook, and I hope you'll all join. Share this far and wide with your friends.
Here's the group description:

Let's create a safe place where people who are experiencing stigma and discrimination can get together and share our stories, talk about current advances in physical research, and plot the occasional internet petition or campaign to end stigma. Let's raise public awareness and demand drug trials and research, and explore new treatments and home remedies together. Please share this page far and wide and add everyone you know who is tired of being treated as if neuro-immune disease is "all in our heads!"

The page is a Closed Public group, so anyone can join, but people viewing the page cannot see the posts until they become a member. This way we can talk openly about our social experiences without worry about repercussions.

Please share this far and wide!


ME, CFS, & Fibro Patients Against Psychological Profiling

The Ricki Lake Show - Tips To Treating Migraines, Fibromyalgia, and

Dr. Teitelbaum was on with Ricki Lake yesterday.  Now, you all know I take issue with some of Dr. T's suggestions for CFS -- if it goes away when you exercise, it's NOT CFS -- but this was some good information about fibro.  I've heard first-hand from a number of people that Ribose/Corvalen works for CFS and fibro patients.

3 Reasons You Should Not Blog

Thursday, October 25, 2012

From Skepticism to Science / After 20 years, chronic fatigue syndro

"When we get sick with a flu, the fever, achiness and fatigue are not caused by the virus itself but by the immune response, the chemicals released to fight infection. Perhaps Jessop's patients had an immune system stuck in the "on" position, creating persistent flulike symptoms. But what virus was causing the disruption?"

Read more:

Wednesday, October 24, 2012

Vermont Scholarship Program

Could we share Vermont's Scholarship initiative with your other on-line activist groups?



Tuesday, October 23, 2012

Article in Today's NYTimes

This appeared today (10/23/12) in the New York Times. It has very positive implications for those with ME/CFS and many other chronic debilitaing diseases who need long-term care.

"Tens of thousands of people with chronic conditions and disabilities may find it easier to qualify for Medicare coverage of potentially costly home health care, skilled nursing home stays and outpatient therapy under policy changes planned by the Obama administration.

"In a proposed settlement of a nationwide class-action lawsuit, the administration has agreed to scrap a decades-old practice that required many beneficiaries to show a likelihood of medical or functional improvement before Mediare would pay for skilled nursing and therapy services."

Full article here:

Billie Moore

Sunday, October 21, 2012

R.I.P. Daddy

My beloved Daddy passed peacefully at 1:45 AM, Sunday, October 21, 2012
Known for his humor, gregariousness, strength, and kindness, he truly was my hero, and not just as a little girl.
Love, Daddy's Little Princess