Thursday, April 12, 2012

April Memos: Bring May Demos!

May is NeuroImmune Disease Awareness Month.

Chronically ill people the world over will push ourselves into painful relapses, preparing for and executing demonstrations to raise awareness of our misunderstood and in many cases underfunded, debilitating diseases.

It'll be great if some healthy people will stand up with us, this year. Who doesn't know someone with one of these diagnoses?
* Addison's * Alzheimers * Autism * Biotoxin * CFS * CRFS *
* Crohn's * Epilepsy * Fibro * GWI * Lou Gehrig's * Hep C *
* Lupus * Lyme * ME * MCS * Mold * MS * Myofascial Pain *
* OI * Parkinson's * POTS * RSD * UC *

This year we celebrate the 20th annual 12 May Awareness Day for ME, uniting with neuro-immune disease patients around the world to promote our events at in hopes that our many events, from a one-person strike:

Rivka Solomon protests for clean blood at Red Cross HQ

even a bed-bound photo demonstration:

Lilan Patri, unable to leave her bed in Berlin, brings the protest home complete with police caution tape.
For an album of 6 photos with captions see here.
to a video on your own or with other NID sufferers:
Giles Meehan produces his ME videos in the UK, and made this one with
contributions from patients around the world.

to a huge Lyme Disease rally in Washington, DC:

Lyme patients and supporters at the White House in May 2011

... can combine to be heard and get some response, like the united chanting of the Whos: We Are Here!

The Whos get by with a little help from a friend in Dr. Seuss's Horton Hears a Who

Please join in. Here are a couple of resources to help you out.

Check the links at to find an event near you. If none of the events listed are near you, keep checking: more are being added within the coming week. Or, if there isn't an event near you, please plan one. It can be as simple and small or as complex and huge as you want.

Here are some pointers for planning, from Rivka Solomon: Rivka's How-To Guide for ME/CFS Demonstrations can also be used to plan demonstrations for Gulf War Illness, Autism, Fibromyalgia, etc., or for all Neuro-Immune diseases, combined. 

Use this Global Event Page on Facebook to hook up with people and events in your area. Folks are sharing artwork to use as banners and in Facebook timeline covers, advice on how to get a government proclamation recognising NIDs, letter templates, and all the frustrations and triumphs of action.

You've got your memo. Bring on a May demo.


  1. Thank you for your great work on this.

  2. Hello, I want to go national with what I consider to be an outrage and theft of life of my family. I have 6 children and am divorced. My ex-husband,myself, and 5/6 children are moderately-severely ill. It started six years ago. Two of us are dying...I have no doubt that we all will within 10yrs. from some unknown autoimmune neuro attacker. I want the world to know!!! Some day they will. This is a new,progressive disease.

  3. Crohn's is spelled that son who is dying, is dying from the progressive neuro-disease 7/8 of us have. He has cancer in his colon one tumor the size of a baseball, the others the size of golf balls. He lives in New York, NY, and was turned away from the TOP GI doctor there for having Medicare....thank to Dr H.

  4. That's terrible, angelskissus, and I hope you can get the word out some more, whether by blogging or demonstrating or in videos or letters ... so many patients are trying to be heard so maybe you can find or create an event near you to help amplify our voices by uniting them.