#kissMEgoodbye was created by an adorable 9-year-old who wants to help her mom and the estimated 17,000,000 other ME* (also known as ME/CFS) patients around the world to find a cure so she created #kissMEgoodbye
"Hello my name is Nienke!
I have the funniest and sweetest mom in the world!
Unfortunately we rarely get to do fun stuff together.
We can't go shopping together, make day trips or bake cookies and she won't be picking me up at school.
Because my mom has a disease.
She has ME
Myalgic encephalomyelitis. Difficult name right?
It is a severe illness and so far without a cure.
It is a complex chronic disease affecting multiple systems of the body, leaving my mom disabled.
My mom isn't the only one the Netherlands counts approx. 30,000 ME patients and around the globe (it is estimated) 17 million people suffer from ME. Adults and children.
Because of ME/CFS my mom is mostly in bed. If she does a small activity, like for example take a shower she immediately runs out of energy to do other things. People with ME have a poor battery. Healthy people recharge during their sleep, but my moms battery recharges only up to max 5%. This makes us really sad as we would love to do things together.
Doctors abroad are performing research to find a cure, but they hardly get money from the government. That is why I would love for everyone to help by donating money for this research so that my mom and all ME patients around the globe can get cured. Will you help me?
In English they say 'kiss goodbye'
I would like you all to help 'kissMEgoodbye' by making a donation for research for everybody with ME and my dear mom.
Paint your lips in a vivid colour and kiss ME goodbye. If you prefer not to wear lipstick, that's okay.
I would love it, if you would take a selfie of your lipstick coloured kiss lips with the text #KissMeGoodbye on it.
You can share your selfie at the kissMEgoodbye Facebook page and at your personal social media: Facebook, Instagram, Twitter, Snapchat, etc. and you are also welcome to join and help without sharing a selfie.
Thank you and a big kiss from me. Don't forget to invite others to join this challenge!"
We invite you to get involved. DONATE to support ME research, take your own #kissMEgoodbye selfie, post it on your social media and on theFacebook Challenge page, and challenge others to join you.
ME is a disease that can affect anyone - men, women and even children, no matter what their age, social or ethnic background.
ME is an invisible disease.
Victims often go unnoticed by the greater population for the simple reason that 1 in 4 patients is home-bound or bedridden.
There is currently no treatment for ME. After years of suffering, there is finally promising research into ME being done in several countries. There is an urgent need for donations.
Every donation, at every level, will help to fast-track revolutionary research. The money raised by this appeal will help to support the leader in ME research, Open Medicine Foundation's (OMF) End ME/CFS Project.
OMF has an amazing research team, including three Nobel Laureates, six members of the National Academy of Sciences and world-renowned researchers in a variety of fields, all working together to unravel the mystery of ME/CFS.
For more information about this study:
What is ME (ME/CFS myalgic encephalomyelitis/chronic fatigue syndrome)**
ME is a complex disease affecting multiple systems in the body: the brain, immune system, heart and blood circulation, energy and hormone production.
Main symptom of ME: serious physical exhaustion after a relatively small amount of physical or mental activity, after which a long recovery time is usually required.
This is called PEM (Post-Exertional Malaise).
In addition, patients have the following symptoms:
* sleep disturbances
* muscle, joint and nerve pain, often with the loss of strength
* difficulty concentrating, forgetfulness
* sensitivity to light and sound
About two-thirds of patients also suffer from concomitant illnesses such as fibromyalgia or other chronic complex diseases.