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ME/CFS Advocates Making a Difference: Giving Thanks

  [ 7 votes ]   [ 1 Comment ]
By Celeste Cooper • • June 23, 2015

ME/CFS Advocates Making a Difference: Giving Thanks. Image courtesy pixabay
Image courtesy pixabay
Reprinted with the kind permission of Celeste Cooper.

By Celeste Cooper

It’s time to say thank you. Advocates work tirelessly to change the perceptions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

According to the CDC, more than one million Americans have ME/CFS, I happen to be one of them. And while my own advocacy focuses on fibromyalgia and chronic pain, and I write articles on chronic pain for Health Central,  I must support those who carry the torch for ME/CFS. There are correlations between ME/CFS and fibromyalgia, and many of us have been diagnosed with both. Maybe incorrectly, I don’t know. They do share underlying immunological changes, even if chemokines and other neuroimmune markers differ between the two of them. Who knows, maybe having a better understanding of ME/CFS will provide information so we can grasp what is happening with other invisible illnesses. We won’t know any of this without research. This is what our advocates know.

Voices Constantly Running in the Background 
As an RN, I am a member of Medscape, which is an organization for continuing education for physicians and nurses. I receive notification of CME and CEU programs and article updates. For the first time, I am seeing articles on the views of important game players, such as Dr. Komaroff.  There is a drive to educate physicians and nurses on ME/CFS as a biological illness. This wouldn’t be happening without the voices that are constantly running in the background.

Gratitude is Motivating

Many donate their time and talent. But, even if some are paid, money isn’t their driving force; it is passion for the cause. Our words of gratitude motivate them. I know this because of my own advocacy for fibromyalgia and chronic pain. So, please tell them thank you!

If I single out any particular person or group, it is only because I have personal communication with them. It by no means says there aren’t others doing the same for us. You may know someone different than I do who is making a huge impact. Show your support by telling them thank you on Facebook, Google+, or Twitter.

In alphabetical order:

Jeannette Burmeister Attorney, ME activist, and blogger.
On Twitter 

Health Rising. Cort Johnson interprets research and collaborates with many people to improve education and awareness. Health Rising now has forums for ME/CFS and fibromyalgia.
On Twitter

The Massachusetts CFIDS/ME&FM Association. Their mission is “To improve the lives of all people affected by ME/CFS and FM, advancing awareness, care, treatment and research.”

On Facebook – CFS Solutions

ME-CFS Community. A world-wide community for individuals who wish to learn from, and directly communicate with those who are afflicted with ME/CFS.

Open Medicine Foundation. Supporting research and patient engagement for treatments and a cure for Neuro-Immune Diseases
On Twitter 

P.A.N.D.O.R.A  Seeking to alleviate the suffering caused by neuro-endocrine-immune diseases, including ME/CFS, fibromyalgia syndrome, multiple chemical sensitivities / environmental illnesses, chronic Lyme disease and Gulf War illnesses.
On Facebook

ProHealth. Educating patients and providers to improve treatment and awareness, and donating 10% of profits to fund research and patient advocacy. Founder Rich Carson  provides forums on ME/CFS, FM, Lyme’s Disease. and general health, and topic related collaborative news and information on ME/CFS, fibromyalgia, and natural wellness
On Twitter 

Jennie Spotila’s blog, Occupy CFS.  Jennie’s legal savvy holds people accountable.
On Twitter

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Article Comments Post a Comment

Lily Chu, MD
Posted by: siebertesther
Jun 23, 2015
I would add Dr. Lily Chu MD of Mountain View, CA who is herself an ME/CFS patient, to any list of gratitude. Dr. Chu was a member of the IOM committee on ME/CFS, serves on a major advocacy organization board and compassionately supports members of the Bay Area CFS Support Group in California. She serves as part of the effort at Stanford University Medical fighting to solve the mysteries of ME/CFS. She also lobbies Congress. Recently she did a video on PEM for patients and perhaps doctors as well. Thank you Lily for all you manage to do on our behalf.
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