Close this search box.

A Patient’s Reflection: Building a Movement for Action

Tears rolled down my cheek while I watched the movie ‘Unrest’. Mixed emotions of both joy and of deep sadness. I let the tears roll down my cheeks and soon there were drops falling on my shirt. It turned into loud sobs and I could hear myself. Silence for a moment and then the smile emerged again like the sun in the dark gloomy sky.
Tears of joy for the VALIDATION, understanding, and awareness which will lead to funding and bring on research.  The day most of all of us await, a CURE for the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ( ME / CFS) community.  Mixed in are tears of deep-seated pain of the years of living in this non-stop onslaught. There is still darkness in the tunnel and we have to chisel away at the rocks to reach the bright light that awaits us.
What is the movie, ‘Unrest” about and why does is it mean so much to me? It’s a thought-provoking and a meaningful movie about Myalgic Encephalomyelitis or ME / CFS a debilitating illness. Patients are racked with severe fatigue and pain and a large percentage of patients are bedridden, unable to leave their homes or wheelchair bound and not be a part of the working society. It’s beautifully portrayed by a young couple Jen and Omar who are deeply in love but Jen goes through struggles of the illness without validation from the medical community or much hope of a cure.
Seeing the raw portrayal of the story unfold in front of me, brought out the intense pain and loneliness I have felt through this journey of living with ME / CFS. I am lucky to have my family and my loyal loving friends. But one has to realize the willpower and courage one has to amass with the limited precious reserve of energy, so as to be able to go through just a day of this illness. Racking pain, severe fatigue, sleepless nights, fainting, cramping stomach, restless legs, cognitive difficulties and sometimes unable to speak coherently and to top it all, our illness not being validated. A feeling for you to understand just a bit of what we go through is to put yourself in our shoes. It is similar to when you have the flu, the way you feel, weak, low on energy, body aches, headache etc….we experience this on most days.
People see me smiling and do not have an idea of what I go through at home, other than the empathetic exceptions who understand me. I was sad at times without any affirmation and the daily challenges. I had to dig deep down into my well of patience. My spiritual belief has kept me strong and wanting to move on with the love that I have for my family. This flickering hope in my heart that all will be right again. I am grateful to the researchers and the medical community and to the ME / CFS community and families for having to endure this with patience and fortitude, knowing that the rainbow is going smile through the stormy weather and the pot of gold will soon be ours.
People say I have the willpower and courage and admire my positivity. That is true but my fortunate circumstances add to making it a bit easier, a loving family and being able to cover the cost for a good health insurance.  Many others in this ME / CFS community are left to fend for themselves, not able to go out and work, leading a lonely existence and to make it worse, not being understood by their own loved ones. Most of all, I wanted to be a mother and that is what keeps me motivated to get well …the joy and well-being of my children and all the children around who bring out the innocence of life with their fresh enthusiasm.
Today I have this feeling of elation and knowing that this four-letter word HOPE is on the horizon.  Hope that the friends, well-wishers, people globally are watching this Sundance award-winning movie,‘ Unrest’  which is spreading awareness and making this misunderstood illness into an understood and justified one. We have hope that the medical community is listening and open to being educated about the illness and treat us with respect and caring. The days of being told we are lazy and have a psychiatric problem which has caused many ramifications to patients and their families over the years. We know that all of you out there are listening and willing to make a change for the betterment of the ME / CFS patients and won’t dismiss this but act now to spread awareness. It is a real illness!  Our wish is for all the medical schools worldwide to learn about ME / CFS in their curriculum so that the doctors can come together and treat this ailing community.
At this time we are urging and asking each one of you to join the #MILLIONSMISSING activists and supporters to stand together on May 12th, 2018. The Unrest team asks you to check this map of #MillionsMissing registered events and take part in supporting and bringing awareness.  Keep checking for updates.
If you have any questions email us them at, .Let people know that the ME / CFS community needs to be recognized by the NIH ( National Institute of Health)  and other government agencies around the world so that they take immediate and serious action in providing funds for research.  This is something small to ask for and I urge you again to take a moment to do this on MAY 12th, Saturday 2018.
Our wish is to inform all elementary, middle and high schools to adopt and educate school nurses, board members, teachers and others affiliated with the schools to assist the student and their families. Let’s move forward and bring in the momentum for our voices to be heard as one. Here is a packet for the schools formatted by Open Medicine Foundation, one of the research institutions of ME / CFS located in Los Angeles.  Please print and hand it to your schools and thank you for doing this.
A HOPE that the community leaders will be reached by you, openly discuss and hold forums where Senators, Congress People come on board and validate and send out information to their communities. For the leaders of our political field to be able to send petitions in the U.S. signed by them and their community people to the National Institute of Health and Centers for Disease Control and Prevention, (CDC)  to receive respectable funding rather than a meager $7 per person annually as compared to other illnesses, such as MS receiving $77 per person annually and AIDS receiving $2,471 per person annually.
We urge each one of you to sign this ME Action Petition,( a U.S non-profit)
Please sign the petition to Frank  Collins at the National Institute of Health NIH.
May I ask you to sign the Global ME Petition too.
We call out with  HOPE that large corporations could make charitable contributions to ME / CFS  and the philanthropists would please hear us shout out for much-needed funds for research.If anyone can connect the Unrest team or Open Medicine Foundation with the above, we would be very grateful.
The tears continue trickling down my cheeks as I identify with Jen and the movie as many of us are living with this debilitating and invisible illness.
I have been bedridden, at home for endless months, wheelchair-bound but at times still fortunate to experience some magical moments and wonders of life. It is the most lonely existence as at the end of the day one knows that the next day has no cure in sight. I cry many times in my covers and then gather my inner courage, knowing that I am grateful for the smallest of things as the birds singing and the sun shining.
ME / CFS is an invisible illness and how do we expect all of you to understand what really goes on when we look good. I tend to smile and laugh and enjoy the chances I get to be with friends as that is who I truly am. But the truth is finally out there, portrayed by Jen in the ‘Unrest’.   We enjoy some moments and it escapes us that we are extending ourselves and using up too much of our energy reserves and we feel the aftereffects in many ways.This is called Post Exertional Malaise or PEM. If we go into an anaerobic level which is measured by monitoring our heartbeat via maybe a Fitbit, ( mine is 105 beats per minute) we tend to go into a  ‘Crash” or feel extremely bad for days to come. Those days for me are laying in bed with less sensory input as sound and bright lights, just quiet, and hoping my depleted energy gets restored. For us, as an ME / CFS community, it is very difficult when you feel good for an hour or two, to know that one has to pace and not overextend. But think about it, would you be able to stop dancing, singing, laughing and going out once in awhile?
Please view the link to see the latest findings and research. End ME / CFS Project We request you to be part of spreading awareness and please feel free to donate to OMF. Let’s together END ME / CFS!!!!!!!
Thanks for taking the effort and time to read this and I know that each one of you in your way will step up  to spread awareness, bring funds and send letters, to your medical community, leaders of the community, the NIH, your government agencies in your country  and bring forth the much needed CHANGE. Let’s build MOMENTUM and step forward to find a CURE! Hope to have you participate at #MILLIONSMISSING in your city on May 12th, 2018.
The tears have dried up for today and I am smiling with my eyes lit up with hope and wonder knowing that the TIME IS NOW TO CARRY ON THIS MOMENTUM & UNREST!!!!!!!!!!!!!!!!!!!!
With gratitude to each one of you for taking action.
Submitted to OMF Anonymously 
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

What are the advantages of giving from your Donor Advised Fund (DAF)?

  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
  • Your fund’s investment gains accumulate tax free.
  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.

How do I make a donation through my DAF?

Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

Still can’t find your fund? 

  • Request a grant distribution through your Donor Advised Fund sponsor
  • Be sure to use OMF’s EIN #26-4712664
  • You can also designate OMF as a beneficiary for your Donor Advised Fund
  • Questions? Give us a call at 650-242-8669