christina a few details in whats going on in her life

a few videos with christina talking about her life before ME and where she is now, even a trip to see if environment can change symptoms

 asked her to repeat what she said off camera, so i could write it here

"one set of dr.s thinks  mold was a triggering factor, the other set of dr.s say viral infections damaged mitochondrial  muscle damage"

 so you guys i don't know why camera blurs in and out 
just pretend you are there in conversation we had a few technical
difficulties but i think it all worked out 

Sandy, after all said and done still has hope

this is sandy, i asked her for a Skype interview

she said she is too ill right now,

she was so kind, apologizing that she

was too overwhelmed looking for medical

treatments over the holidays.  sandy said to use

any of the words we had on messenger

"Yea, ME is like the body breaks down and goes to a near death state but refuses to die and everyone is different in how sick they are and what symptoms they have and what helps them. I have been sick for 9 years, but wasn't exactly well before that either, so it's hard to say where the line of sickness starts and health ends. And mine started out very strangely, with a rare and disabling eye condition, and didn't morph into ME until years later. Figuring out the next move is hard. I feel like when you reach a certain severity, it's all about day to day survival...trying to plan a next move is nearly impossible."

below is sandy's husband along with her words

I didn't sleep last night, again. Not one minute. This is not uncommon for me, despite the fistful of medications, herbs, supplements, teas, and practices. My heart raced, hot and cold sweats, untouchable widespread pain, along with dozens upon dozens of other unbearable symptoms.

This afternoon, when I was finally able to reach for my phone, I realized that today was the global protest for ME. My husband had attended the protest. I had no idea he was going to until I saw this pic he texted me. In that poster is Ron Davis, world famous Stanford geneticist who had been named one of our greatest inventors, along with the likes of Elon Musk. And yet, he struggles to get federal funding to study the disease that is killing his son, instead relying on private donations.

I was beyond moved. And then I cried.

I cried because the afflicted aren't the only ones missing from their lives. Our caregivers are missing, too. My husband looks tired because he doesn't sleep much either - between work and care taking, there is little time for him to do much else. He's healthy, but like all other caregivers and scientists and doctors and advocates devoted to this cause, he is missing, too. He has missed exciting career opportunities because it would require too much time away, countless family and social events, travel, sporting events, his hobbies of golf and basketball league, along with all the things we said we would do together.

Awareness, understanding, equality, and funding is missing and desperately needed.

Check out #millionsmissing for list of protest demands.

lugus apparently her new career is being a weather channel operator

an interview/conversation about the weather

 which thankfully leads into one factor of ME sufferers

 and how they are affected by temperatures.

talking with whitney via Skype

whitney tells us about the beginnings of getting

sick, giving us indications of who she was before

and how she's managed in survival mode

and somehow grown from what i hear in this conversation

honestly just scratching the surface

do i really understand ME?

Myalgic Encephalomyelitis 
  

the answer is no...
they seem to tie it in with chronic fatigue syndrome, i hear others
mention lyme disease,mold toxins, mercury fillings being removed unsafely,environment,traveling to india and coming down with 'flu'
like symptoms.   

i met a woman with ME named lugus I'm guessing 3 years ago 
the story is way too long to start with, so pieces here and there
will be woven in.  as for me jill emery i was a musician for many years  still an artist/painter i have my work on etsy thats where i met lugus, she was selling her gemstone energy infused bracelets.

we would get to talking  I'm in california she is in toronto
our conversations would lead us on many tangents from bob dylan, movies,spiritual climates,healthy food options to making up scenarios like we were trying to 
write bits for our own comedy.

Her story would unfold in front of a very inquisitive me not necessarily absorbing the information, it was more like i would see her living it that's  where i would grasp and learn or unravel this baffling auto immune disorder? is neuro supposed to be in there too?  

lugus       jill

this is a pic from the 2nd time i visited her

she has been bedridden for 13 years, 

she was a buddhist nun at a monastery, she is an herbalist

and did much traveling,worked at a natural food co-op for many years until she would collapse.

 i just didn't want to see her as 

a person who is not well but I've seen her through seizures,not being able to move,speak,eat much.   I've also got the feeling from 

others who suffer with this of varying degrees, almost just written off by most

as lost causes, while others have stayed by the sides of unbelievable circumstances.

 finding a dr. who has the knowledge or being able

to afford or get to one seems next to impossible.  

hoping in the words here this can create a better understanding or even bringing awareness

the trials they have to endure,  to their lives with families,losses of jobs to plain ol survival. going outside of this with what they love, things that keep them alive.