CDC Stalling and Diverting Funds for ME/CFS Research

Dr Vincent Rocanilla is a colleague of Dr Ian Lipkin at Columbia University.

They have research ready to promote and no funding. They are crowdfunding to hasten accessibility to patients and doctors (and the evil pharma - keep an eye on how this plays out but first watch the movies: Dallas Buyers Club and Constant Gardner.

Please support Dr Lipken's research and send a strong message to politicians and pharma that we CAN go around them. Your financial support does that. Here's the link: 

http://www.microbediscovery.org/

Even as all this happens I fight to find a doctor who knows anything about my illness. The only doctor in Florida, Dr Nancy Klimas, at Nova Southeastern, doesn't accept my federal Blue Criss insurance, has a 200 person wait list And will cost me out of pocket up front between $1800 and $300 cold, hard cash that I don't have. Double that for my husband who also has the illness - onset 3 yrs ago.

Verified test results:

Low IGg immune system factor

High blood titers on all herpes viruses except one

Confirmed diagnosis of Disseminated Herpes Simplex 1 in my lungs from a bronchoscope 

4 sleep studies over 8 years that show zero stage 3 and 4 sleep - so no cell repair hormone HGH

Confirmed irregular heartbeat

Severe multiple chemical sensitivity

I have 100% of the recognized symptoms, the best insurance money can buy and yet I still don't have an officially recognized illness.

I have all this now and still have no diagnosis that is recognized by my doctors or insurance. Do you know in the US it is illegal to name an illness that doesn't have a drug to treat it?! Is that backwards?!

Bruno Irvine Hand Off To Bruno Mars via the song "Natalie"

From 2 weeks after my adorable, little 14 year old dog Bruno passed I have awakened every morning to the song 'Natalie' by Bruno Mars as my ear worm. Long before I knew the lyrics I would surface awake with NATALEEE screaming me awake. This is weird too because the ME/CFS coming awake period transition is usually this: "Holy Fuck I hurt. I'm too tired to wake up. What fuckin time is it cuz I feel like I haven't slept at all and that truck hit me again during the night." So having Bruno Mars singing 'Natalie' to accompany that - well let's just say it made it a lot easier to take. Here they are doing the live version which I can't get enough of.

I was only familiar with 3 of his songs and one performance at the Oscar's. But when I researched how this seemingly 'new' performer had skyrocketed to get in on the SuperBowl I found there was no skyrocket. This kid had been honing his craft since age 6 in Hawaii playing Elvis in his family's entertainment act.

And somehow this made it so that I could wake up every day and still think and say the name Bruno. The name that was as much a part of my life as breathing. No move made for 14 years without considering him. It was an intimate dance with a 100% committed tiny protector and healer. 

I don't want to minimize grief here at Bruno Mars' expense. His mother passed unexpectedly last year. She was just 3 years older than me and he is younger than my kids. I know how I felt when my mom passed and I had a lot more time with mine than he did and it was rough.

I think it makes his performances even more incredible to me. It's helped me immensely to see him giving back and really going all out in his performances. I've never been able to sing when I'm sad so it makes it even more amazing to me.

Truly I have old lady crushes on his whole brand when they do the little Natalie dance. One day I will be well enough to try to imitate that.

Here's a pic of the dudes at work...or is that play? I'm thinking play?

For now I spend several hours each morning humming or singing a hatcheted up rendition in my voice that can't come close to the notes or the body that hurts too much to do the moves.

Bruno dog I miss you beyond measure. The world seems less without you.

Bruno Mars I am SO sorry about the passing of your mom. That's one mountain of grief to set aside to perform. I hope it helps that you are truly making a positive influence out here. That effort means something. And the same goes for your bro and your sisters.  Your mama is proud of you guys.

Here's a video of my little dog Bruno playing with our cat Dave in our condo in Colorado prior to going on the road in the RV:

http://youtu.be/9LtlZEHNVf8

I miss our inter-species family but what an awesome ride it was. I will see you both on the Rainbow Bridge.

Peace be with you and all that jazz,,,,,

Chardale Irvine suffers from Myalgic Encephalomylitis commonly known as ME/CFS. She was struck down at the age of 35 with this illness which the US Government and Pharmaceuticals have minimized, trivialized and made a blatant move in 1990 to divert research funding, change case definitions from a physical illness to a psychosomatic mental illness and smear to ruin the reputations of any doctors or researchers who dared to pursue study or treatment.

To date it still is not recognized as a real illness, there are no specialists and treatment is not covered by insurance.

Please support Dr Ian Lipkin from Columbia University to promote his research so that treatment for ME/CFS can be mainstreamed. He is crowdfunding because there are no grants but he needs funds to promote it through trials. Every penny counts!!! 

http://www.microbediscovery.org/

If you wonder about the abuses that are imposed on people by pharma I suggest watching the movies 'Dallas Buyers Club' and 'Constant Gardner' in quick succession. You will be changed.

Thank you for your support.

Char

Of Seemingly Endless Grief - The Bruno Handoff

On December 7, 2013 my little dog Bruno passed on here in Florida while I was in Utah trying to help my son Adam find his feet again after the stress of having his daughter Cadence taken 10 months earlier. 

It was a difficult trip with a difficult goal that didn't play out quite the way we planned but in the end it got Adam back in play fighting the courts for his daughter.

I faced brutal criticism from my family while there and afterwards. Three people expressed their condolences. Otherwise there was silence. And the wash of guilt for not being there with Bruno in the end, after 14 years of his undying, hyperfocused attention and an energy field as big as a room. 

Bruno was a Yorkie-Pom-Hairless Chinese created. 

A Gypsy Girl: What Would I Say To Myself Age 1-5

Age 1:

Where was I? Orem, UT

Your mom and dad will always be sad that your brother Maury died of SIDS on March 6 at the age of 13 months when you were 6 weeks old. Hang on. With a bit of time they will be back on track. After you get your tonsils out next year you won't be sick nearly as much. You are tiny and frail now but you will grow to be strong and tall.

Age 2: 

Where was I? Provo, UT and Dutch John, UT (where my dad helped build the Flaming Gorge Dam)

See that little baby girl in the crib right there? She will be your closest and bestest friend forever and ever. You will save her from drowning when she's 3 and you will try to cut her leg off by throwing her in the river showing off for boys when she is in the 4th grade. When you're 53 she will still be your best friend and best ally. Her name is Sherone.

Age 3: 

Where was I: Not a clue

I got nothin' except get lots of rest because the next few years you're going to get yourself in lots of painful pickles.

Age 4: 

Where was I? Payson, UT 

Don't run in front of a bike while someone is riding. When they run you over it will hurt like hell even if your brother gets a whooping. Don't stand near anyone swinging a sickle (sling blade - is there a reason that's one of my favorite movies?) cutting weeds because it will leave a painful gash and big lifetime scar when they hit you in the leg even if your brother gets a whooping for hitting you. Sadly not every landlord will give you Lifesavers when he comes to collect the rent. You will not live in that spider infested house much longer. Your constant nosebleeds will soon stop. That roseola virus you have this year is coming back to haunt you at age 35 and on by setting the stage for you to get ME/CFS. You won't be a morning person ever again after this year. You'll also never 'have' to nap again.

Age 5:

Where was I? Linden, UT and Modesto, CA

If you melt the toes of your snow boots in the campfire trying to warm your feet you won't get new boots. Your brother will never trust you after the third strike of running the iron up his arm. Sherone will save you from your first whooping by getting blamed for exploding the lightbulbs from spitting on them.

You will never find another kid like Julie who likes to perpetually spin on the monkey bar as much as you do. There is not one other person in the world who will ever beat your 100 spins in a row record or sport that awesome callous on the back of your right knee like that.

That batmobile in Modesto was probably NOT the real batmobile. 

You will someday love and crave those dreadful avocados. 

Someday wearing that Autumn Leaf Girl costume that your mom made will be a fond memory.

Sorry to say it but this will be the funniest Christmas ever. 


My sister Sherone Taylor blogs about the beauty and basics of life at www.annapearlsattic.blogspot.com

Kim's Upset Tummy Remedy

Funny story here: our dog walker in New Smyrna Beach, Kim recommended this for our dog Bruno after he had a run in with a heart worm med that messed him up. He had diarrhea for too long. He hated this but Walt and I fell in love with it for desserts or snacks or...when our own tummies or guys are acting up. 

And it tastes yummy too!

1 cup plain yogurt with active cultures

3 cloves chopped garlic 

2 tablespoons coconut oil, grapeseed oil or olive oil

1 tsp real vanilla

Raw honey to taste

Add yogurt and vanilla to a large soup sized bowl.

Sauté the garlic in the oil over medium heat stirring til it just starts turning brown. Scoop garlic into yogurt mixture to cool it and stop it from cooking anymore. Stir well and add honey to taste. Serve immediately. 

Chardale's Golden Milk for Pain

I've seen these recipes floating around and they've always been made with coconut milk and I'm allergic to coconut so I never made it.  But today a front came through and I was hurting so I got desperate. My meds do nothing to touch the barometric pressure pain but this really seemed to help - with my own adaptations of course. If you aren't allergic to coconut I highly recommend using it because it has awesome healing qualities.

The great thing about this is that it tastes really good! Like dessert even!

Chardale's Golden Milk

1/4 c water

1/2 tsp turmeric

1/8 tsp black pepper

1/2 tsp cinnamon

1/2 tsp ground ginger
(You can increase the turmeric and ginger if your taste buds can handle it)

1 tsp coconut oil, grapeseed oil or olive oil

1 tsp vanilla

4 cups coconut milk, rice milk, protein powder plus water, goat milk - or regular dairy milk (run, run the other way)

Raw honey to taste

In saucepan heat water, turmeric, pepper, cinnamon and ginger over high heat to bring to a quick boil while stirring constantly. At boil turn to medium and keep stirring until it thickens. Remove from heat.

Pour 'milk' in a little at a time stirring constantly. Add oil, vanilla and honey to taste. Heat over low heat while stirring to get to drinking temp.

This is great for pain and inflammation and a great way to get medicinal herbs in the not so enthusiast naturalists and/or kids. 

Give this a try and then post a comment to let me know how/if it worked for you or what modifications you tried/use.

Thank you!

Gypsy Char

Chardale's Jungle Juice for Colds & Flu

In pint jar mix:

1 cup raw honey

3/4 cup apple cider vinegar

2 heaping tsp ground cinnamon

1/2 tsp ground ginger

1/2 tsp turmeric

1/8 tsp cayenne pepper - more if you can tolerate. 

1/4 tsp ground sage

Put lid on and shake til dissolved. Take 3-4 tablespoons or half a shot glass every 2 hrs.

Good for pain, inflammation, sinus issues. Be ready! It has a bite and gets a little gelatinous so shake it really well. Hubby Walt swears by this stuff.