Why We Need to Raise Awareness 

Disease sufferers have different ways they try to raise awareness of their plight.  This is often done by distinct colored ribbons and assigned months when events and activities are geared toward raising awareness for that particular disease. 

Myalgic encephalomyelitis (ME) uses the color blue for the awareness ribbon and the month of May has been assigned as the month of awareness.  All patients suffering from any illness have dire needs for attention, whether for funding for research or for proper care and treatment.  ME patients, because of the history of neglect and malfeasance by the government health agencies, have the added responsibility to testify about their personal stories and about the dismal history of medical abuse. 

In order to be able to affect change, there is a need to explain why that change is needed. The Department of Health and Human Services (HHS) has been guilty in their actions and neglect of an estimated one million U.S. patients suffering for decades, without relief.  The Centers for Disease Control (CDC) is guilty of obscuring the reality of this neuroimmune disease by coining ME with the debasing moniker ‘chronic fatigue syndrome’ (CFS).  The government is guilty of willfully obscuring the disease by creating loose definitions that include patients suffering from idiopathic fatigue or psychiatric diseases.   

The National Institutes of Health (NIH) is guilty of grossly underfunding ME for decades.  ME has been shown to have the lowest quality of life for its patients - lower than multiple sclerosis, congestive heart failure or cancer, yet NIH funding is at the bottom of the list of all diseases!  This malfeasance and abuse needs to be brought to light, shared widely and a great call for change needs to be shouted out. 

It is only when change comes about in the form of restoring the proper historical name ‘myalgic encephalomyelitis’ and the adoption of the ME criteria created by ME experts like the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC), that progress with the disease will begin.  These two steps are needed as a prerequisite to any other actions toward progress.  We have witnessed and suffered from the damage caused by using the wrong name and criteria, such as marginalization, medical neglect, medical abuse and research on the wrong cohort of patients which confuse study results. 

The NIH needs to start funding ME equally to other similarly burdened diseases.  This has been calculated as a minimum of $250 million a year for pure ME research funding.  More federal funding needs to be raised for other projects toward care, education and support for patients - equal to other diseases. (for example HIV/AIDS gets $16 billion discretionary funds on top of their $3 billion for NIH research).

May 12 is Awareness Day for ME 

MEadvocacy is a project of May12.org, whose mission is to “raise global awareness and education for Complex Immunological and Neurological Diseases (CIND)”.  The late patient and staunch advocate, Thomas (Tom) Hennessy Jr, was the founder of the May 12 International Day of Awareness movement. Tom said of the awareness day: “We would all agree to come together at least ONE day a year for May 12th to Lobby Congress and get the word out to the media that these CIND (Chronic Immunological and Neurological Diseases) were costing our economy tens of billions in lost productivity and billions in medical costs.” 

May 12th was chosen 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, she started the world’s first school of nursing. 

Tom fiercely advocated for the name myalgic encephalomyelitis to be used for the disease and for the adoption of criteria created by our experts such as the Canadian Consensus Criteria (CCC).  He understood that it was the government-constructed demeaning name and faulty inclusive criteria that were holding the science back from real advancement, and stunted the much needed relief needed for ME patients worldwide. 

MEadvocacy.org and May 12.org continue this legacy.  Our mission is to get the name, myalgic encephalomyelitis, recognized in the U.S. as it has appeared and been coded for decades at the World Health Organization (WHO). We are fighting for HHS to adopt ME criteria - the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC).  These are the first steps that are needed in order to reinstate the disease to its origins.  It is only with the basis of the rightful name and criteria along with NIH research funding equal to other similarly burdened diseases ($250 million a year), that we have the possibility to solve this disease and bring hope to the millions of sufferers. 

May Events and Activities 

• Use a Profile Overlay: Change your social media profile page with a May awareness overlay. See the easy instructions here.

• Write to Congress: Send an easy one click letter to Congress asking them to direct HHS to: Use the historic name myalgic encephalomyelitis which conforms with the World Health Organization (WHO); adopt criteria created by the medical experts - the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC); fund NIH research commensurate with other similarly burdened diseases - $250 million per year.

• Demonstrate: A #MillionsMissing protest will take place on May 25, 2016 in Washington DC at the Department of Health and Human Services (HHS). There will be simultaneous protests nationwide at HHS regional offices in Atlanta, Boston, Dallas, San Francisco and Seattle, and worldwide protests in Vancouver, Canada, London, England and Australia.  See this link for details and for instructions on how you can participate at the actual or virtual demonstrations.

• Send Awareness to Congress: Purchase a copy of the documentary ‘Forgotten Plague’ and give instructions so that it can be mailed to your Congressional representative.  See here.

• Map the Disease: Place yourself on the disease map for ME and CFS to show graphically how many of us there are. Patients, their family members or friends and organizations can take part in this here.

• Light Up the Night: 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/

• Walk for Awareness: ME/CFS Awareness Walk 2016 - Troy, Michigan (Detroit area), organized by new organization FIND (Foundation for Immunological and Neurological Diseases) contact Frank Plizga at [email protected] - https://goo.gl/EJsiW3. The walk is from noon to 1 pm. So far they have 5 confirmed walkers and 5 conditional. There will be balloons, signs and passouts.

• Blog for Awareness: #May12BlogBomb started and hosted by Sally Burch is an opportunity for anyone to blog and raise awareness about one of the chronic illnesses that Share May 12 Awareness day.  See instructions about how to send in a submission here.

• Sign the Dutch Petition: Add your signature to ‘ME is not MUPS’ (medically unexplained physical symptoms)to tell the Dutch Health Council to replace the committee members who believe that ME is a functional and somatoform illness -  here.

 Links: 

May12.org (US organization) - Awareness events -  http://may12.org/

Link to May12th.org (Canadian organization) 2016 events document:

https://docs.google.com/document/d/1ccLiDiapINpmeTNWfZw-ajuGjVcuY0XWYt2VdtPD8iE/edit

Link to Prohealth article for other May awareness activities:

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=28862