interesting clip of what people with ME go through

with additional info on research and the immediacy 

https://www.facebook.com/NathalieHWilliams/videos/10156004031092619/

Jen Brea on ted talks

seeing this bring on a lot of open dialogue where people are posting
they are eager to talk,discuss,be heard, dissect get this on the table

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#

Jen has made a documentary on ME called 'canary in the coal mine'  really for more advancement check her site http://www.jenniferbrea.com

Angela, Kristina's partner answers a few

(Admittingly so it felt a bit awkward addressing the partner who is with someone with ME, i found myself concerned i was undermining the person with the illness, I'm thinking this stemmed from watching family dynamics while the partners went day to day with cancer. emotionally, physically hard, Angela reminds me of what i saw during that time  'you take the good with the bad' )

You were already together when kristina was diagnosed,

from your perspective being in a relationship with someone who has ME

what are some of the adjustments you’ve made together or individually?

We have learned that we now have to plan ahead and we can not be spontaneous like we once were. We have to take each day as it comes. Before she got sick, we were able to just get up and go and do whatever we wanted. Planning is a must because activities she once was able to do with no issue ends up wiping her out for days or weeks. We both had to learn to both be more patient with not only this disease but with each other. 

the severity of symptoms seems to vary  do you and kristina have a system?

considering the  line gets blurred between caretaker and partner how do you

guys keep your ‘viability' rather than the illness consuming the lives in one way or another

like kristina said, “i need to have a purpose”

I don't see it as being a caretaker to Kristina. Our relationship is still equal. We had to learn more patience and understanding. It has definitely tested our relationship and it's been very hard at times. It is very hard to see someone you love who was full of life bedridden and sick most days. It was very hard in the beginning for me when we did not have a diagnosis. Watching someone you love who is clearly ill and not getting any answers is just as frustrating for the person who loves them. If any good came out of this, it did make us stronger as a couple because it showed us that we can weather any storm. I know in my heart if our situation was reversed, she would do the same for me. How we get by day to day and not have this disease become our entire life is to remember we are a couple and try cherish those good days when they come because you need them when there are bad days. 

not knowing you at all so i don’t know any background,

has this given you any spiritual break throughs or breakdowns, realizing some

things in life we thought were so important,really aren’t its a strange cycle really

You realize that you never take a day for granted with a loved one. Life is too short and goes by and in a blink of an eye, everything can change. Especially when you are not prepared. You just take the good with the bad and just keep on keeping on. 

is there any one thing that you would

like to share for other partners that are in a similar situation, from you or what you see

from kristina’s view 

(in my mind i always like people to know they are’t alone there is always a relating story)

Never give up on love. It can be very hard and sometimes even frustrating to see someone that you love so much suffer so bad, especially with a disease that people just don't understand. It's hard to explain this disease to outsiders. True love only comes around once in a lifetime and when you're in it. You are in it for the long haul. You never give up. 

There are times where she gets down about herself for not being able to work or do things like she used to. I have to remind her that she is loved and valued even when she at times feels like this disease has taken everything from her. I let her know as much as I can that the one thing this disease did not take is me. 

Kristina and Angela below

kristina answers 6 questions

what was the cause of your ME?

I was diagnosed by the late Dr. A. Martin Lerner in 2014 after a severe ear infection that required hospitalization. After this infection, I became profoundly ill and bed ridden. After seeing many doctors and being tested from everything from Lupus to Lymphoma, I finally got to Dr. Lerner. He diagnosed me with chronic EBV, CMV and HHV6 viruses. I admired him so much and his passing was a huge loss for all of us with ME/CFS. I try to honor his memory whenever I can because he literally devoted his life to a patient population no one wants. 

what were you doing in life prior?

I was a very driven, career oriented, active person. I was an advertising sales director/manager, I was also studying to become a lawyer. Before this, I also studied to become a chef. I had just gotten married. I loved to travel and was a vibrant and engaged person. 

are there any enlightenments that came with this package?

It was very hard to accept my "new normal". I think for me the biggest loss for me was not being able to work any more. My work and my career was everything to me. When you suffer from this disease, there are many things you have to mourn. I have had to mourn the loss of my former self. I have had to mourn the loss of goals, dreams and plans. I have had to mourn relationships with people who move on because they don't understand or have the time to wait for you. This disease has taken a lot from me and on my worst days it feels like I am in a Dickens novel where I am visited by 3 ghosts and I can see life go on all around me and glimpses of the past and what would have been my future and I am unable to participate in any of it. It's very difficult to watch life moving on without you. I could say my "enlightenment" would be had I known this was going to happen to me.. I would have done even more with my life before I got sick. I am now also trying to find my new purpose in life. I need to have a purpose more than spending my life in pajamas and in bed. I think I am getting close to finding out what that is... I hope anyway. 

what type of medical treatments do you receive from far left to right if any?

Dr. Lerner had me on the most aggressive form on Antiviral therapy there is. I was on Vistide/Cidofivir. This therapy was brutal however, it proved to be the most effective for me. Unfortunately in the middle of treatment (over 6 months of it) my platelet count became dangerously low and Dr. Lerner passed away. This protocol actually gave me some quality of life back but because it's controversial and dangerous; most doctors won't even entertain it. I am now with Dr. Susan Levine in NYC and I am on an aggressive dose of oral antivirals. I am going to be speaking to her about trying LDN. I also have to take pain management for the severe inflammation and pain in my joints and body. Sometimes the antivirals side effects are worse than the actual disease. I am pretty much willing to try whatever it takes to have some sort of normalcy in my life. 

i see a cat picture on your Facebook page  what does your cat think?

That picture is of my precious Gabby. She passed away 2 days after Christmas 2016. Gabby was my "soul cat". When I was in a bad flare or sick, she would never leave my side. She was amazing. I am tearing up as I write this because I miss her and her unconditional love. On days where I would be bedridden, she would snuggle up next to me and just having her near me brought me so much comfort. It was very hard to say good bye to her. But she was sick too and lived to be about 16. She was a good girl. 

(sorry about gabby,she sounded amazing and i totally get the comfort that our creatures bring us)

lastly  what thing do you do in life (could be the smallest tiniest thing) that makes you feel

“oh man I’m alive"

On those rare days where I feel well enough to leave the house.. I make sure I put on make up, try to make my hair look nice, put on a nice outfit. I was quite the fashionista before I got sick. I have a rebelious streak so, there are days where I get defiant with this disease. So, when I do these things for myself it's becauase I still have that hope that one day they will find a better way to manage this disease or even a cure. I dream of returning to my former life. 

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.