May 12, 2022, marks the 30th anniversary of International Awareness Day for Complex Immunological & Neurological Diseases (CIND), and the 10th anniversary of May12.org.
“If a cause and cure are to be found for ME, FM, MCS, GWI, Chronic Lyme Disease and other related C.I.N.D. illnesses in the near future, government and medicine must be made fully aware of their scope and impact.
Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding. To this day, many patients run directly into a medical establishment that, in general, knows very little about these serious threats to human health.
It is therefore crucial that all those affected by the illnesses make their voices heard, especially on May 12th of each year.”
Late ME and Lyme patient and advocate (April 16, 1954 - Sept. 9, 2013)
https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome/in-memoriam-thomas-m-hennessy-jr/
Founder and President of R.E.S.C.I.N.D., Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases).
QUESTIONS:
When was May12.org established?
March 2012, a 501(c)(3) non-profit corporation.
Who was involved in the beginning?
Joni Comstock, and advisor, Thomas Hennessy, Jr.
What was the motivation to start May12?
To raise global awareness and education for complex immunological and neurological diseases (CIND) and to promote education and research for these devastating diseases including, but not limited to the following: myalgic encephalomyelitis, chronic Lyme disease, chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivities, mold/biotoxin illness, and Gulf War Illness.
To help educate and support patients suffering from these debilitating, disabling, and often “invisible” diseases, and help support Thomas Hennessy, Jr. for the 20th Anniversary of May 12 International Awareness Day.
When/why did May12 begin the MEadvocacy project?
Mary Ann Kindel and Joni Comstock, both American patient advocates, launched the project in 2014. According to our mission as an all-volunteer organization, MEadvocacy advocates for recognition, definition and research for myalgic encephalomyelitis.
Here’s the link to the promotional trailer:
https://www.meadvocacy.org/promotional_trailer_m_e_advocacy_org.
Documenting Advocacy and Projects by May12 & MEadvocacy
The following lists some highlights from the last 10 years. This is not a complete list.
2012
Dec 2011 & Jan 2012: May12 helped Thomas Hennessey in Boca Raton, FL with R.E.S.C.I.N.D, Inc., information, papers, mailings, etc.
Jan 26th-28th: May12 attended the Physician’s Round Table Conference at Tampa Westshore Marriott, Tampa, FL
Theme: Connecting the Dots
Subjects: Autism, Lyme, Fibro, CFS, Cavitations, Autoimmune and Neuroimmune Diseases, Black Box for Medical Errors, Morgellons, Alzheimer's, NCS — and more! Met Dr. Judy Mikovits, and others.
Feb: May12 supported, and signed with a volunteer statement on “The Devastation of Lives and Lies: Those with Lyme disease and related chronic infections respond to the Infectious Diseases Society of America's (IDSA's) request for comments."
Mar: Created May12.org Facebook page, May12.org became a nonprofit, supported the 20th Anniversary of May12 International Awareness Day. Had T-shirts designed, sold, shipped & promoted for awareness.
May: May12 hosted a rally outside of the capitol building in Des Moines, IA.
2013
Jan 23-27: May 12 attended the Physician’s Round Table Conference in Tampa, FL with Thomas Hennessy. Networked with the attendees, including Dr. Judy Mikovits, and the Florida Lyme League.
May: May 12 representatives met with Governor Branstad of Iowa to sign the May Awareness proclamation.
Thank you to Judith Weeg, President of Lyme Disease United Coalition (LDUC) in Iowa for making the arrangements. Ms. Weeg, and May12 founder - both contacted Dr. Mariannette Miller-Meeks, Director of the State Health Department in Iowa. She was apprised of the issues of Lyme disease in Iowa.
May: Iowa World-Wide Lyme Protest hosted by May12 with volunteer organizers - Skip Good, and Betty Gordon, Iowa Lyme activist, outside of the Capitol Building in Des Moines, IA.
May: May12 had three representatives attend the Lyme MayDay Protest in Washington, D.C., with video footage briefly included in Under Our Skin 2: Emergence - trailer, and the movie, thanks to Lisa Hilton.
This picture (from the video clip) in Wash., D.C., with our reps, is used in the trailer & movie mentioned above.
Sept 29: Tribute to Thomas Hennessy, Jr., read by Joni on the telephone memorial service. “Thomas teamed up with and supported May12.org, to carry on his vision: Unite to win this fight together! Strength in numbers!”
2014
Jan: MEadvocacy project started.
Feb: May12 joined Twitter.
Mar: MEadvocacy.org officially launched.
May: May12 met with Governor Branstad in Iowa to declare May Lyme Disease Awareness month and sign the proclamation, the letter was read & hand-delivered to him. We contacted the news media to do the story:
https://www.youtube.com/watch?v=Qzjd229gvhc
May: May12 Iowa Rally & Ride 4 Lyme held at the Capitol Building in Des Moines, IA.
July: May12 supported, and helped admin on Lyme Patients vs CDC: Class Action Suit (14,965 members on the page) with Ross Anderson. We sought an attorney to file an "immediate injunction" to stop the continuation of harm due to the grossly inaccurate two-tier Lyme disease testing.
Graphic, support, and awareness by Luba Williams, page owner of Lyme Disease Posters.
Sept: May12 supported, and was an admin on both the “CDC No More Tiers” group campaign to flood Medwatch (thanks to Creda Perilli) on Facebook, and the Lyme Disease Support in Iowa public page.
Oct: 10th & 11th - May12 supported, attended, and represented at the MayDay Project candlelight vigil, and the protest outside of the annual medical conference organized by the Infectious Diseases Society of America (IDSA) for IDWeek in Philadelphia, PA, we handed out flyers and business cards.
Dec: MEadvocacy & May12 supported the “NIH Pathways To Prevention for ME/CFS Workshop (P2P)” protest organized by Tom Jarrett, family, and friends.
2015
Jan: MEadvocacy hired a PR firm to advocate for those unable to attend.
www.meadvocacy.org/update_national_pr_campaign_for_me_1_15_2014
Feb: MEadvocacy mentioned in the Washington Post article New chronic fatigue syndrome report doesn’t help us. “MEAdvocacy.org, an organization that represents patients, is concerned about the government’s control in defining this disease. We are concerned that IOM criteria are too concentrated on “fatiguing” symptoms, and omit key neuro-endocrine-immune symptoms.” https://www.washingtonpost.com/news/to-your-health/wp/2015/02/25/new-chronic-fatigue-syndrome-report-doesnt-help-us/
Apr: MEadvocacy joined Facebook & Twitter.
May: MEadvocacy organized the "ME Patients Visible at the Capitol Demonstration" in Washington, D.C., led by organizer Susan Kreutzer.
https://www.meadvocacy.org/me_patients_visible_at_the_capitol_pictures_and_videos
https://www.youtube.com/watch?v=3ZfLrHHBAbU
May: May12 founder contacted the whistleblower Judiciary Committees Republican Oversight and Investigation Staff, Senator Joni Ernst, and Senator Grassley’s office via email.
May: MEadvocacy utilized the “One Click politic app” on NationBuilder which provided the community an easy way to send a letter to their member of congress. https://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research
Jun: May12/MEadvocacy representatives attended and supported OccupyTheUSDOJ in Washington, D.C., along with former Pfizer analytical chemist and scientific whistleblower, Kathleen Dickson from ActionLyme, Jerry Seidel from ResearchFraud, and others. May12 founder arranged and attended a meeting with Brian Simonsen, Legislative Correspondent for Senator Joni Ernst from Iowa, lobbied on Capitol Hill, protested outside of the USDOJ & hosted FB online event page.
https://www.meadvocacy.org/press_release_disabled_chronically_ill_occupy_us_dept_of_justice
https://www.meadvocacy.org/_update_on_usdoj_protest_by_may12_org
2016
MEadvocacy published multiple blogs throughout the year expressing concerns about the NIH intramural study starting with the “NIH Clinical Study: A Case of Continued Institutional Bias“. https://www.meadvocacy.org/nih_clinical_study_a_case_of_continued_institutional_bias
Feb: MEadvocacy hosts a Guest blog by Maryann Spurgin - reprint of her book review about “New Age "Science" or Pseudoscience: A Review of Mark Demitrack's and Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment - https://www.meadvocacy.org/a_blast_from_the_past_a_review_by_maryann_spurgin_ph_d
Mar: MEadvocacy’s volunteer, Joni Comstock, on the NIH ME/CFS advocacy conference call, made a public comment regarding the issues with the intramural study for ME/CFS - https://www.nih.gov/nih-me/cfs-advocacy-call
Mar: MEadvocacy along with advocate, Eileen Holderman, spent many combined hours on their blog, "NIH Sidesteps Critical Problems with the ME/CFS Study" "MEadvocacy sent a petition to NIH to cancel and restart the NIH Intramural Study on ME/CFS because of the many significant problems with the study’s design and protocol and lack of myalgic encephalomyelitis (ME) stakeholders’ input."
May: May12 volunteers along with Arlen Burroughs, a software engineering student, developed and hosted an easy way to spread awareness across social media with a May awareness overlay for your Facebook, Twitter or other social media profile photo.
Jun: MEadvocacy sent submissions to congressional appropriations committees asking for proper recognition of ME and sufficient funding for research.
https://www.meadvocacy.org/meadvocacy_reaches_members_of_congress
Oct: MEadvocacy volunteers created the “ME ICC Questionnaire” to help patients determine if they may fit the ICC criteria. https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636
2017
Jan 19: May12 founder filed a complaint with the Iowa Attorney General, Tom Miller, regarding Lyme disease, leaving and sharing templates on both LinkedIn and Facebook for others to use.
May: MEadvocacy published MAY12 International Awareness Day- 25TH Anniversary blog
Jun: May12 founder sent emails, made telephone calls to arrange a meeting with Senator Grassley (Chair of the Senate Judiciary Committee) office, and Joni Comstock attended remotely via phone, speaking at the meeting, along with representatives of TruthCures/SASH physically in attendance.
https://www.meadvocacy.org/truthcures_lobbies_dc_to_meet_senate_judiciary
Sep: MEadvocacy raised awareness about concerns that CDC’s website update for “ME/CFS” is inadequate for ME. (Website has changed very little since then despite these objections.) See “CDC’s Website Revision is no Reason for Celebration” https://www.meadvocacy.org/cdc_s_website_revision_is_no_reason_for_celebration
2018
Jan: MEadvocacy reported on their testimony at the CFS Advisory Committee (CFSAC) meeting held in December 2017. It was noted by many during the meeting that there is a lack of urgency, faulty and harmful information on CDC website, previous CFSAC recommendations have not been fulfilled, patients still face dire circumstances of being denied disability and patients are dying while waiting for treatment. (Sadly, this situation continues today.) https://www.meadvocacy.org/testifying_at_cfsac_dec_2017_and_looking_for_changes_in_2018
Jan: MEadvocacy’s blog “MEadvocacy’s comment to NINDS/CDC CDES Draft” shared concerns that the process doesn’t recognize the importance of diagnosing patients using the expert International Consensus Criteria (ICC) to select patients for research. Explained the dangers of using broad criteria that have historically impeded progress in researching ME.
https://www.meadvocacy.org/meadvocacy_s_comment_to_ninds_cdc_cdes_draft_see_what_you_can_do
Mar: May12 founder, Joni Comstock, in communication via LinkedIn with Captain Richard Henry, Deputy Director, Blood & Tissue Policy & Programs at U.S. Dept. of Health & Human Services, in private dm’s over the Lyme debacle, sending him valid scientific evidence and asking him, “What is the cure for this?” to which he responded, “The cure would likely require the type of efforts HIV has been given for 35 years (vast resources).”
Jul: MEadvocacy promoted the newly created petition “#PwME4ICC Demand US Health Agencies Recognize ME as a Defined by ICC”
https://www.meadvocacy.org/sign_petition_pwme4icc. (Petition is still active.)
Aug: MEadvocacy raised awareness about the importance of recognizing Severe ME day in the “Severe ME Day 8th August, 2018: Understanding & Awareness” blog with artwork and information referencing UK ME advocate Greg Crowhurst’s work at www.Stonebird.co.uk. https://www.meadvocacy.org/severe_me_day_2018.
Sep: MEadvocacy wrote about the unexpected dissolution of the CFSAC by US Health and Human Services (HHS). This avenue for patients' voices to be heard was silenced abruptly after 15 years. NOTE: There is still no advisory committee for CFS or ME which has blocked the ability for patients to voice concerns to HHS.
Oct & Nov: On very short notice, MEadvocacy responded with three blogs and submission to the US ICD-10-CM coding by the Coordination and Maintenance committee who proposed placing Systemic Exertion Intolerance Disease (SEID) and Chronic Fatigue Syndrome (CFS) in the same ICD heading under Brain Disorders with myalgic encephalomyelitis. A special thank you to consultant Jerrold Spinhirne for assistance in that submission.
2019
Mar: MEadvocacy.org revitalized its website. Thanks to all the generous donors who helped make this happen as well as Olga Pinsky who was instrumental in volunteering to help coordinate this project.
Mar: Educational blog about the importance of using the ICC instead of vague criteria brings more awareness to the community about the danger of the growing use of the systemic exertion intolerance disease (SEID) criteria. This blog, “SEID is killing ME”, raises awareness about how the ME/CFS label no longer applies to the Canadian Consensus Criteria (CCC) but instead is now defined by the IOM’s SEID criteria. https://www.meadvocacy.org/seid_is_killing_me
NOTE: As of this writing almost all references to ME/CFS refer back to the IOM/NAM report and are not refering to the CCC.
May: MEadvocacy volunteer, Colleen Steckel, reported on her interview about MEadvocacy with Llewellyn King as well as what she learned at the NIH conference in the blog “Advocating for ME-ICC in Washington, DC”. https://www.meadvocacy.org/advocating_for_me_icc_in_washington_dc
Jul: “MEActivists meet with HHS - Calls to Action” blog described Eileen Holderman and Gabby Klein’s meeting with Senior Advisor of the Office of Intergovernmental and External Affairs of the Dept of the Health and Human Services to discuss the request in the Open Letter to Secretary Azar and to deliver the #PwME4ICC petition. https://www.meadvocacy.org/me_activists_meet_with_hhs_calls_to_action
2020
May12 volunteer board members spent a large number of combined hours upgrading their website behind the scenes. Adding on substantial targeted science, history, resources, and facts.
May: May12.org launched its revitalized website for the 28th Anniversary of International Day Awareness Day.
https://www.may12.org/revitalization_of_may12_org_website
Volunteers focused most of their time on the Lyme Resources page, including the science on OspA, immunosuppression, persistence, and a Proposed 3rd Definition by May12.
Jun: May12 submitted a written statement to The Tick-Borne Disease Working Group (TBDWG) which was published in July on hhs.gov.
https://globalscience.home.blog/2020/09/11/the-following-comments-are-provided-on-behalf-of-our-organization-may12-org/
Aug: Severe ME Day blog, “Severe ME Day - August 8, 2020: Desperate Plight Continues in Darkened Rooms” raised awareness for those most severely affected. https://www.meadvocacy.org/severe_me_day_august_8_2020_desperate_plight_continues_in_darkened_rooms
2021
With all the confusion of the “pandemic”, as well as a decline in the health of our volunteers, led to a slowing down in blog writing. Many volunteers still continued to raise awareness on social media by utilizing the resources on the websites.
May: For May awareness, the committee put together a blog to share “Anne’s Journey of Survival, Perseverance and Hope with 30 years of ME”.
Anne LiConti’s personal story offered insight into the importance of getting thoroughly screened, including for dysautonomia. Her journey is an example of how there may be treatments that significantly improve the quality of life even for those ill for a long period of time. https://www.meadvocacy.org/anne_s_journey_of_survival_perseverance_and_hope_with_30_years_of_me
To see the index to find links to all the blogs on MEadvocacy’s website go to: https://www.meadvocacy.org/blog_index.
2022
30th Anniversary of May12 International Awareness Day and the 10th Anniversary of www.May12.org.
The Challenges Faced
Gathering unbiased, substantive science that researches immune deficiency, reactivated viruses and opportunistic infections from which patients suffer.
Trying to help patients, caregivers, and the research and medical communities understand the importance of an accurate disease definition, criteria and testing for proper diagnosis, treatment, and to clearly show how necessary they are for accurate, more substantive research. To help patients, their caregivers and the public understand how the government drastically underfunds research and health services for neuroimmune diseases; and prejudicially controls the type of research being performed where historically most of the money has been allocated to psychosomatic type studies and funneled away from biomedical studies.
In an effort to face these challenges we contacted governors to have May Awareness proclamations signed, along with giving them information and pamphlets. We sent complaints to Federal and State Attorney Generals. We also contacted multiple parties including attorneys, doctors, nurses, pharmacists, scientists, researchers, hospital CEOs, public health departments and US government officials at HHS, CDC, and NIH.
Volunteers also reached out to journalists, media outlets, authors; gave speeches at continued education classes for state licenses, protested outside of Infectious Diseases Society of America (IDSA), the US Dept of Justice, and Capitol buildings.
We networked via social media including Facebook, Youtube, Twitter, Instagram, Pinterest, LinkedIn, Academia.edu, Telegram, etc. Many members also advocated on various forums.
We supported many projects and awareness/educational events that included: letters to officials, ActUp4ME, ActUp4Lyme, ME Chili challenge, thunderclaps, Light Up the Night, and more.
The following are petitions that our organizations have supported, shared, and encouraged others to sign over the years:
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Calling for a Congressional investigation of the CDC, IDSA and ALDF -- petition started by Carl Tuttle with over 98,100 signatures.
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf
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#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC – petition started by Gabby Klein.
https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now/u/24823089
IN GRATITUDE
In honor, memory, and appreciation of all those past and current volunteers who have helped May12.org and MEadvocacy.org over the last decade. Thank you!
Thank you to Tom C., and Tracey S. for sharing their personal stories on our website. The experience of the patients has always been an important part of raising awareness.
We want to sincerely and deeply thank all of you who have visited our websites, shared and commented on our social media posts, and provided donations.
We would like to give special recognition to Arlen Burroughs, Eileen Holderman, Susan Kreutzer, Creda Perilli, Olga Pinsky, Kathryn Stephens, Mike Stone, Skip Good, and David Steckel.
FUTURE PLANS
We have enough funding to maintain our websites for www.May12.org and www.MEadvocacy.org for at least another year.
Many of the blogs continue to be timely as so little has changed in US policy. We hope everyone will continue to utilize the information in these blogs as well as the important materials.
Please review our resource pages for helpful and informative information to share on social media:
https://www.may12.org/resources
https://www.meadvocacy.org/resources
As can be seen by the sheer amount of advocacy efforts put in by all who offered their time and energy as volunteers, much has been accomplished as a labor of love.
For those looking for further information about myalgic encephalomyelitis, please join ME International: ME International is an all-volunteer organization with a similar but expanded global mission which is to make sure ME is recognized as a distinct disease. ME International’s mission is to educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, organizations, family and friends.
We don’t know what the future holds, but we hope there will be a breakthrough in the stranglehold of biased governments, medical and science communities.
Our goal has always been to bring forth progress in proper funding, research, criteria, testing, and treatment for patients with neuroimmune diseases. This would significantly result in a better quality of life, saving lives; reducing disability, pain and suffering.
We hope our websites continue to be a stronghold against the systemic bias and an ongoing resource to connect and empower patients, advocates, and influence medical professionals and the public to create a better future.
Sincerely,
May12.org Board of Directors
Joni Comstock, Rory James, Tracey Smith, Lea Wolven
and
MEadvocacy.org Advisory Committee
Joni Comstock, Gabby Klein, Tracey Smith, Colleen Steckel
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