Monday, May 11, 2015

Help Fund Research for Awareness Day

May 12th is myalgic encephalomyellitis (ME) awareness day.  ME is a very serious and complex neuro-immune disease which afflicts as many as 17 million people world-wide.  

One way to raise awareness is to help fund research that could lead to a definitive biomarker and a better understanding of the disease, as well as to potential treatments or even a cure.   If you are able, please consider donating to the Open Medicine Foundation's End ME/CFS Project, which aims to conduct the first comprehensive study on those like me who are severely afflicted with the disease and are bedridden and/or housebound.  It has been estimated that we comprise about 25% of the patient population, and yet, we have never been fully studied as a whole.  This new study is therefore very important in terms of understanding the disease and finding answers that could lead to treatment. 

The  Open Medicine Foundation (OMF) states: 
"As part of our End ME/CFS Project, this study will conduct a comprehensive, “Big Data,” analysis on severely ill ME/CFS patients with the goal of finding sensitive  and distinctive molecular biomarker(s). The molecular biomarkers that reflect the symptom mechanism are expected to be strongest in the approximately 25% of ME/CFS patients who have a severe form of the disease and are home-bound or bedbound.
...In addition to increasing the accuracy of diagnosing ME/CFS, a distinctive biomarker that correlates with symptom severity could reveal the disease structure or mechanism."  

The OMF's End ME/CFS Project donation page can be found by clicking the image below:

Donation Page

Another noteworthy fund raising effort has been set up by Tom Whittingham, brother of severely afflicted ME patient and advocate Naomi Whittingham.  Tom has created a beautiful and powerful video (posted below) to help raise awareness about ME, and to appeal for more research funding.  He will be running in the Edinburgh marathon to raise money for ME Research UK.    Please watch and share his video widely.   To visit Tom's JustGiving donation page, click here.

Even if you are unable to donate, you can still help!   Please consider signing this important petition asking that the NIH increase funding for ME and CFS research.  Despite the disease's severity and high prevalence, as well as an estimated economic burden of $20 billion per year, ME/CFS remains among the least funded of all illnesses in the U.S.   The NIH spends only 5 to 6 million dollars each year on the disease, and that amount is estimated to remain the same through 2016.  More money is actually spent studying hay fever each year. Increased funding means more research, more answers, and the possibility of finding a treatment or even a cure.   It will only take a second of your time to sign.    Thank you!

NOTE: An additional, similar petition has just been created by ME Action and can be found here.


  1. Thanks for this and for all you do!

  2. Thank you for sharing this info. I will repost and share on Facebook. ❤

  3. Thanks for posting this, Laurel. Good to hear that there's finally going to be a study focusing on severe ME - it's about time.

    Not up to videos today but I'll make a note to come back and watch Tom's another time.

  4. Great article, it actually ties in pretty well with the multi-national advocacy group we launched today for M.E.

    Why don't you see what we are about and if you agree, feel free to shoot us a private IM. Would love to chat more

  5. Great practical "to do" ideas, thanks Laurel.