International Awareness Day for Myalgic Encephalomyelitis

Posted on Facebook:

Today is International Awareness Day for Myalgic Encephalomyelitis (ME/CFS) and this is my small effort to educate and contribute to a larger understanding of this disease. Like I said last year, there’s not much point in continuously sharing information within the patient community, since we know the hardships all too well, so I’m asking my healthy friends to take a minute to learn a bit more about this debilitating neuroimmune condition. Only with awareness can the tides change.

Like many illnesses, there is a large range of disability. Some people can hold jobs, while the severe end of the spectrum is horrific incapacitation*. Unlike other illnesses, however, there is virtually no budget for research (male pattern baldness has 6 times the funds devoted to discovering treatments, according to Dr. Klimas).

274c75c7-e926-442c-947c-68e020e95d2b-1-1In my own case, I have made a lot of improvement since starting immunoglobulin infusions 7 months ago. Facebook reminds me that this time last year I was bedbound, in pain, with flu-like symptoms, which still happens, but with much less frequency. Things are more stable, payback isn’t as vicious. I still use a mobility scooter in the dog park, but I have more than doubled my daily steps and I’m able to do more. Today I went to the bank. ūüôā

More information:

Jen Brea on TED Blog
Occupy CFS: Very Very Aware
Learning to Live With ME/CFS: Today is International ME/CFS Awareness Day

How you can help:

On May 26th, MEAction has organised the #MillionsMissing project, which will take place in multiple cities across the world, with a coordinated campaign of demonstrations and demands. Learn how you can support it here.

Sign this petition to increase funding to find a cure.

There is very little funding for research for treatments, so, if you have the inclination and means, donations are sorely needed:

U.S: Open Medicine Foundation
U.K: Invest in ME

In the U.S:
Tell Congress to Increase Funding for ME Research.
Send your congressional rep Llewellyn King’s article on The Hill’s “Congress Blog”.
Buy a “Congressional pack“.

*More info on severe M.E.:
Severe M.E. and Invisible Illness Video
JK Rowbory: All the things that you never wanted to know about my life with an acute chronic illness

ME/CFS Alert videos ~ I think you should watch them!

Friends and Family, I watched the following ME/CFS Alert videos today and I highly recommend them for anyone who is interested in learning or understanding more about this disease. They are only about 10 minutes long.

The first video is an interview with¬†Dr. Staci Stevens, exercise physiologist at the Workwell Foundation¬†(formerly¬†the Pacific Fatigue Lab). She explains post-exertional malaise ~ in my opinion, the number one most debilitating and cruel symptom of this disease ~ from a clinician’s point of view. Here is an article by Cort Johnson about Dr. Stevens’s protocol, which uses empirical testing to establish the (very low) anaerobic thresholds of ME patients. Cort says, “So emerged the ‚ÄėStevens Protocol‚Äô ‚Äď the¬† only test that actually documents post-exertional¬† fatigue, and documents it so well that failing the test is virtually a slam-dunk for a disability evaluation.”

This interview with Dr.¬†Kenny de Merlier, an ME/CFS expert from Belgium, is very interesting (it is listed as Episode 42, but when the video actually starts playing, it says Episode 41, fyi). Dr. de Merlier believes that in¬†every case of ME, an infectious disease triggers an autoimmune response. I, for one, have great faith in his knowledge and the work he does. Again, I encourage everyone to watch this interview (and Episode 43, which is also with Dr. de Merlier) to get a better understanding of this baffling illness from a clinician’s viewpoint.

Here is an interview with Dr. Dan Peterson, one of the world’s foremost experts in ME/CFS. Dr. Peterson has been seeing patients for 25 years and now heads Simmeron Research in Incline Village, Nevada. The depressing reality here is he says, in his 25-year career, he has never seen a full and total recovery, he doubts he will ever see a cure, and getting¬†governmental monetary funding or political support¬†for Ampligen¬†research/treatment¬†has been “an exercise in futility” (also, he says many of his patients have developed lymphoma, which in itself is scary).

While you’re at it, you might as well watch this video interview with a patient of Dr. Peterson. She¬†has been sick for 25 years and is now on Ampligen.

Thanks for taking the time to educate yourselves.