May 12, 2017 International Awareness Day- 25th Anniversary!

This year marks the 25th anniversary since the late patient and staunch advocate, Thomas (Tom) Hennessy Jr,  designated May 12th as the international awareness day.

May 12 was chosen as International Awareness Day for Complex Immunological and Neurological Diseases (C.I.N.D.) since 1992.

The diseases included in C.I.N.D., such as myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), chronic Lyme disease (CLD), fibromyalgia (FM), Gulf War illness (GWI), mold/biotoxin illness, multiple chemical sensitivity (MCS) and now includes post-sepsis syndrome.
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Tom designated May 12 as the special day to memorialize the birthdate of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing CIND-like illness and became chronically ill. She spent the last 50 years of her life virtually bedridden, and despite being severely debilitated, started the world’s first school of nursing.

 

Patients suffering from misunderstood and neglected diseases, such as the CIND diseases (many similar to Post-sepsis syndrome, Google it and read the symptoms), have an added urgency to educate about the disease and raise awareness of the needs of its millions of sufferers.  Patients suffering from debilitating neuro-immune disease have an added challenge of educating about the different "labels", name and definition of the disease.

 

Tom Hennessy understood that it was the government-constructed demeaning names and faulty criteria that were holding back good science which was the cause of too many early deaths and prolonged suffering for millions of patients worldwide. We deserve vindication, validation, funding, proper treatment and a cure.

 

Social Media Profile Picture Overlays - Easy Way to Create May Awareness for ME, CFS, Lyme, GWI, FM and MCS. 
There are four easy steps:

1. upload your profile photo or use your Facebook profile picture

2. Select the overlay you desire

3. Download the result to your computer

4. Upload the result to any platform where you want to raise awareness 

http://arlenburroughs.com/extras/may12overlay/make_overlay.php

For more information, please see:

http://www.meadvocacy.org/easy_way_to_create_may_awareness

 

CHRONIC LYME DISEASE (CLD) 
 

Lyme disease or neuroborreliosis has left millions of people to suffer in isolation with an AIDS-like illness similar to post-sepsis. Victims are frequently misdiagnosed or denied any diagnosis at all.

The only CDC-sanctioned Lyme disease testing is ANTIBODY based. People whose immune systems are destroyed (immunosuppression) don't produce the required antibodies to get a positive test. The “Dearborn” case definition was put in place in 1994, when the now-failed Lyme vaccine, LYMErix was in the trial stage and it became known that the antigen used (a highly acylated lipoprotein, TLR2/1 agonist; triacylated, that's also shed by the organisms that cause Lyme disease) was causing adverse events that looked exactly like what we know as "chronic Lyme disease" or "post-treatment Lyme disease syndrome”.
 

The one priority needed in order to open up the floodgates so all Lyme victims may receive proper recognition, their disability payments, and correct treatment:

Removal of the falsified Lyme disease case definition- aka Dearborn (1994), and then the fraudulent two tier Lyme testing (which misses approximately 85% of neurological Lyme patients) would be eliminated.
 

www.TruthCures.org is demanding a prosecution.

 

Worldwide May Awareness 2017


Event list courtesy of May12th.org (Canadian site)

https://docs.google.com/document/d/18_89C2UgsdbxepWto61VnpVS2pW9gL0dZhF0rgFe3Kk/edit
 

Lyme Events List - 

What Is Lyme Disease Website

https://www.facebook.com/groups/716124845131333/

 

ME/CFS Events List - 

May12th.org (Canadian site)

http://www.may12th.org/information/

https://www.facebook.com/events/1582469145340572/

 

 

United States (US)

 

USA May 12 MECFS Awareness Day Light Up the Night Campaign

https://www.facebook.com/events/1514264558796071/

https://www.youtube.com/watch?v=O4Bzevj6WGA&feature=youtu.be

https://www.facebook.com/USALightUptheNightMay12/

 

Australia

 

Canada

 

Italy

 

Japan

 

Northern Ireland

 

Netherlands

 

Republic of Ireland

 

South Africa

 

Sweden

 

 

 

 

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M.E. Advocacy - A project of May12.org

Your source for advocacy information and actions for ME and CFS

Please Join Us

WE firmly believe that: AWARENESS, IDENTIFICATION, ACKNOWLEDGEMENT, EDUCATION, PREVENTION, more RESEARCH and a CURE are crucial!
We MUST reach "the tipping point" to get the majority of PEOPLE on board with our AWARENESS CAMPAIGN!

NO ONE ELSE should have to suffer with these wretched NON DISCRIMINATORY DISEASES.

Protect the children.

The entire month of May is now dedicated as AWARENESS month for those who suffer from CIND's.
*Including Myalgic Encephalomyelitis (ME) & chronic Lyme Disease (CLD).

Some ways of promoting Awareness Day is to phone, e-mail, and/or fax to politicians, news media and public health officials.

We should plan a coordinated RALLY/ ACTIONS in many locations ALL over the World and invite the news media!

Let's take this a step further & INVITE:

The Girl Scouts, Boy Scouts, Legions, Universities, Colleges, schools, International or American Camp(ing) Associations, Attorneys, Veterans, Veterinarians, Pharmacists, doctors, nurses, cosmetologists, barbers, teachers, students, physical trainers, blood banks, etc..

ACTION/RALLY/ PROTESTS at the following:

  • government health offices
  • major cities, state capitols, provinces, regions
  • hospitals, clinics, malls, farmer's market,
  • protest from bed if necessary, even if the protest is only one person
  • on-line by recording and putting the video on YouTube

That way we make a huge splash.

First day local (either May 10, or May 11th ~or whatever day is best for your location!) ~ in person, and the second day global and on the internet!

Using visual aids like:

  • Picket signs, brochures
  • wearing t-shirts, buttons or ribbons
  • wearing prison clothes (trapped in our own bodies with shackles)
  • canes, walkers, wheelchairs, motor scooters
  • beds, blankets, pillows, sunglasses, ice packs, heating pads
  • sacks with our meds & supplements, side walk chalk outlines, or a casket (with names of those deceased)
  • mannequins (for those who are unable to attend, with attached picture/statement of someone who is bedbound/housebound & can't make it)
  • tent or cardboard box house (for those who lost their home due to illness)
  • human hamster ball (like living life in a bubble)
  • tie ribbons to visible trees, mailboxes or doors
  • yard signs, wristbands
  • carry ketchup in ziplock baggies to simulate BLOOD & ANYTHING else we can DO to GET THE WORLD's ATTENTION!!!!