Thanks for the heads up, featherjack!

I'm there in spirit

I sent a donation and a few of my friends and family did as well. I am there in spirit. I pray great things happen for us.

Pity it took place the day after the first US Presidential debate - sucked all the air out of the room.

Blessing to All.

GREAT idea. First time I heard about it. I'm ALIVE and kicking here in Northern Alberta - no longer invisible! Maybe I will start speaking out more and telling others about my illness. So far, I've pretty well tried to keep it a secret. I think it's because I'm afraid other people will just think I'm feeling sorry for myself. The people I have told don't believe me and just say that I should push myself harder. Of course they believe there is no such thing as CFS, so I must just be depressed. The only people I know (in person) who believed me was my mother who was very close to me and my husband who had to live with me. My father said it wouldn't hurt me at all to go back to work, so he had no empathy at all, although he was a good person. I'm not sure if my son believes me or not but at least he's said nothing negative. He faithfully comes and mows my grass for me and he also told me that he understands that I can no longer cook. So I'm grateful for his understanding. He also knows why I want to sell my house. My son is the greatest blessing I have in my life. I'm so thankful I was able to have a child. I'm very thankful for my friends as well, although they don't believe that CFS is a real illness. My little doggie is a treasure and the sweetest thing in my life. The public does need to be educated though about CFS so that it isn't disbelieved all the time. And Doctors need to get on the ball too. The medical association needs to inform ALL doctors about this illness. I'm really TIRED of so many of them being totally uninformed. The disinformation has to STOP. We all need to do whatever we can to get the word out, so I am going to stop being so secretive, so that I am doing my part too. Thanks for the jolt I needed. It's NOT about me. It's about EVERYONE who has to suffer from from this crazy illness. As brothers and sister, TOGETHER, we CAN get this message out. That's half the battle. I'm trying to remember a bit of poetry. "To strive, to seek, to find and not to yield"?? Does anyone remember how it goes? Love from Cheryl xo

Hey Cheryl,

I'm so glad you felt moved to action! Yes, the ignorance and stigma MUST END. These are some things that I have found to be helpful in getting past the disbelief and disrespect:

1. STOP CALLING IT CFS. Calling it "chronic fatigue syndrome" just feeds the disbelief. It's more like the setup to a mean joke:
"I have chronic fatigue syndrome."
"Really? I'm tired all the time; I must have it too."
Calling it CFS is only a half-step better than calling it "yuppie-flu". It's a real illness with a real name.

2. Learn to pronounce "myalgic encephalomyelitis" (http://bit.ly/2dvLVJ4 - it took me 2-3 weeks, so keep practicing until it rolls off your tongue) and use that term first. I usually say "I have myalgic encephalomyelitis (geshundheit). ME is a neuroimmune disease that involves brain inflammation and immune system compromise. It has robbed me of about 80% of my pre-illness energy level, and now requires 2-5 times as much rest to recover from even minimal exertion. That's exertion of ANY kind, physical, mental and emotional. It's given me difficulties with language, memory, concentration, balance and has impaired my immune system. It's also given me pain, brain fog and difficulty processing input and sometimes inout overload. I can only do or hear one thing at a time, otherwise I lose the whole thread."

3. Draw a distinction between tiredness, which everyone knows, and our fatigue which is so crippling. Here's a comeback to the CFS exchange in #1: "You only know what 'tired' is. ME produces PROFOUND fatigue, exhaustion really, every day. If I exceed my energy envelope (http://bit.ly/2dvNtCZ), it takes days, weeks or months to recover. Most of us never recover from this illness)."
By all means, include other hallmark symptoms or symptoms that trouble you. Just keep it short and calmly assertive. You're stating facts and they remain true even if your listener doesn't believe them. There's no need to get upset about it; people will think what they will and their disbelief doesn't change what's true or diminish you in any way. Practice your 1-2 minute summary so you don't forget it halfway through!

Now if the conversation is still going on, i.e. your listener is open to the radical notion that maybe #ItsNotAllInMyHead, here are some educational resources for you:

4. Get familiar with the Spoons Theory (http://bit.ly/2d6aMm3); sometimes normals can relate to that.

And more resources so you can learn more about our illness:
What is ME? - http://bit.ly/2dVt3oM (UK site)
Trial by Error: Problems with the PACE study that recommends GET and CBT - http://bit.ly/2d6dWGF
QMUL releases the PACE data | #MEAction - http://bit.ly/2dxTBcJ
Solve CFS: Feb. 2015 US Institute of Medicine report - http://bit.ly/2d8u1tw
Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome - http://bit.ly/2cV1wmh

I'm a pretty high-functioning ME patient: I can no longer work, but I can still get out of bed, ride the bus for errands a few times a month and I try to walk at least 1/2-mile every day. What I've found works best for me is a a few things: a positive attitude, gratitude for what I CAN still do and the beauty I see, and acceptance. By acceptance, I mean accepting that I have an orphan disease from which I will probably never recover, BUT that MAYBE I can get a LITTLE better, or at least not get any worse.

I've developed a hyper-awareness of my energy level, stop and rest IMMEDIATELY when I feel myself approaching my limit, and take scheduled rests throughout the day. Sometimes resting means reading, writing or watching videos; others times resting means a 3-12 hour coma-like sleep. Worst is when I can't sleep, but can't move either, when it feels like my skin is just full of lead shot or sand -- way too heavy to even think of moving.

I wish us all Health, Happiness, Love, Light and my Best Wishes,
Jackson

#ThisIsME #ThisIsCFS #ME #CFS #MECFS #myalgicencephalomyelitis

Good old Jack to the rescue. Excellent guidance there.So needed .Hugs brother.

Hugs, Sis. ;-)

Oh, and everyone should feel free to copy/paste this, with attribution, anywhere that occurs to them. I posted it widely; please do the same if you wish.

Hugs All.