In memoriam: Thomas M Hennessy Jr.

September 22, 2013

Gabby (Nielk)  pays her respects to fellow ME patient and staunch advocate Thomas Hennessy Jr. who died earlier this month. Rest in Peace at last, Thomas.

Thomas Hennessy Jr

Thomas M Hennessy Jr
1954-2013

A little over a week ago, on September 9th, the international Neuroimmune Disease (NEID) community was shaken by the news that well known and warmly respected patient advocate Thomas Hennessy Jr. had died.

“A former advertising executive with a knack for a bold phrase,” Tom had kindly granted Phoenix Rising an in-depth interview that we featured again last year, called, “Fierce Advocacy”. He revealed a lot about his inner determination and previous efforts to fight for awareness and recognition of these serious diseases; showing us how committed he was to ensuring changes were made for the better.

Despite his own personal battle with both ME and Lyme for 25 years, Tom became known as someone willing to speak his mind and who had access to the right ears. In the minds of many, he proved to be a patient-advocate-extraordinaire and will be very much missed by our patient community, his family and friends.

I did not know him personally, but our paths crossed two years ago when I became involved in raising awareness for May 12th and was helping a friend with images for her “ME Awareness: Words and Pictures” Facebook page. I found Tom to be a true inspiration and my greatest source of encouragement: a real motivator.

He was devoted to the cause and determined to make a difference in the lives of those who suffer the most.  It is surreal how such an outspoken and dedicated voice has been prematurely extinguished.  Thomas, you will not be forgotten.

Founder of the “May 12th” international movement

He will perhaps most warmly be remembered for the founding of May 12th Awareness Day, which has become a truly international event for our community. Asked about it’s origins, Thomas said:

“I started the concept of Lobby day back in 1988, when I tried to convince Barry Sleight and his wife, Michelle Freeman, to join me and enlist my father, the top Lobbyist for J. Paul Getty in Washington D.C., to work for FREE on our behalf to get Congress involved.”  

International Awareness Day - ME Aareness Pics - FacebookOne reason for raising awareness and keeping up the political pressure was clearly at the front of his mind, as was the dire alternative:

“One stroke of the congressional pen could get us millions of dollars for funding…or get us stricken from getting any funds for research at NIH.”

Why, you might ask, was May 12th chosen as a date? It was to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross, and who was believed to, “have contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden.”

In 1992, Tom also founded the organization RESCIND (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders), its intention was to be a virtual non-profit organization, and it aimed to be a website full of information for people who could not leave their home. He said then of May 12th that:

“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.”

Unfortunately, the RESCIND website has had to close due to lack of funding support.

His passionate entreaties

Tom deplored the name “Chronic Fatigue Syndrome” and, some 24 years ago, in the first formal meeting called to discuss a name-change, he declared:

“There are hundreds of thousands if not millions of Americans and millions more worldwide who are left destitute by these terrible diseases. But you will never get the respect, the research dollars, and the acceptance of your peers until you change this asinine name. We are tired of being sick, not sick of being tired. And if you do nothing else today, change the God damn name!”

He later said of that testimony:

“I explained to that audience back in April 1989, that IF they didn’t change the name that very day, and nip this problem in the bud, it would cause a mess for decades and it has.”

How right he was!

In 2011, Tom also revealed how passionate were his feeling towards the adoption of a better definition for the illness he preferred be named as Myalgic Encephalomyelitis:

“…we need to adopt the Canadian Consensus Definition, by Carruthers et al. TODAY and scrap every other definition in use anywhere in the world. Period! Go with the name Myalgic Encephalomyelitis, which is not a perfect name, but it describes a CIND (Chronic Immunological and Neurological Disease) which has had a WHO classification for 40 years. The Canadian Consensus Definition must be adopted worldwide immediately. All other definitions and names need to become moot-immediately.”

Phone-in memorial – Sunday 29th September

P.A.N.D.O.R.A. is inviting everyone to join them for phone-in memorial for “the father of International May 12 Awareness day for NEIDS” on Sunday September 29th – from 3:00pm until 4:00pm in CDT. The call-in number is 559-726-1300, access meeting code 915440.

Those outside the U.S. may dial in through their computer through the Internet using the Flashphone here. You can also view the details and join the discussion on the phone-in Facebook page here.

Awareness Day NEID - Faebook

ME Awareness: Words and Pictures

“Tom brought his marketing and public relations talents to the advocacy of neuro-endocrine-immune diseases,” said Lori Chapo-Kroger, RN, PANDORA Org President.  “His concept of a lobby and awareness day for these illnesses is now commonly observed by patient advocacy organizations around the world, including our organization.

Tom was one of the firsts, before most scientists, to recognize that Gulf War Illness is similar to ME/CFS. Because of the similarities among the diseases, the necessity to reduce misconceptions, and the call for a stronger activism voice, Tom conceived of advocating for all of these illnesses together, along with fibromyalgia, environmental illness and chronic tick-borne infections. He suffered from quite a few of these ailments for many years.”

Taken from an article “Chronic Fatigue Activist Dies In Boca Ratonin”, from Boca News Now, September 19, 2013.

Rest in peace at last, Thomas.

Other resources:                                    

Thomas Hennessy Jr. Facebook Memorial Page

Thomas Hennessy Jr. Obituary

Prohealth Article by Erica Verillo

History of May 12th Awareness Day

24 comments

{ 24 comments… read them below or add one }

justinreilly September 23, 2013 at 12:02 am

Thank you Gabby.

My heartfelt condolences to his family on the loss of a true hero in the fight against ME and those who persecute ME patients.

I am very thankful for the gift of the life of Tom Hennesey to this world.

Let us celebrate his life by carrying on his work.

Nielk September 23, 2013 at 6:52 am
justinreilly

Thank you Gabby.

My heartfelt condolences to his family on the loss of a true hero in the fight against ME and those who persecute ME patients.

I am very thankful for the gift of the life of Tom Hennesey to this world.

Let us celebrate his life by carrying on his work.

Thank you, Justinreilly. My thoughts exactly!

Roy S September 23, 2013 at 7:27 am

Thank you, Gabby. I haven't yet been able to find adequate words about this. Tom was a close friend long ago but we hadn't communicated recently. Tom used to call this the "Rodney Dangerfield Disease" which is why I put this picture after one of his posts here.
http://forums.phoenixrising.me/inde…name-change-to-me-cfs.6861/page-2#post-139674

Nielk September 23, 2013 at 7:45 am
Roy S

Thank you, Gabby. I haven't yet been able to find adequate words about this. Tom was a close friend long ago but we hadn't communicated recently. Tom used to call this the "Rodney Dangerfield Disease" which is why I put this picture after one of his posts here.
http://forums.phoenixrising.me/inde…name-change-to-me-cfs.6861/page-2#post-139674

Thank you Roy for this!

SarahLaBelle September 23, 2013 at 9:15 am
Nielk
Roy S

Thank you, Gabby. I haven't yet been able to find adequate words about this. Tom was a close friend long ago but we hadn't communicated recently. Tom used to call this the "Rodney Dangerfield Disease" which is why I put this picture after one of his posts here.
http://forums.phoenixrising.me/inde…name-change-to-me-cfs.6861/page-2#post-139674

Thank you Roy for this!

Roy S, could you make that link so it works?
the … in the middle seem to be a problem, maybe. At any rate, the link goes nowhere for me, even when I am logged in!

The loss of Tom is huge to me though I did not know him personally. From the earliest days of my life with this illness, I was getting my information from Tom Hennessey. Now I learn he was the age of my baby brother, and somehow that makes it even sadder.

Roy S September 23, 2013 at 9:23 am

Hi Sarah,
It's on the second page of this thread if this link works for you:
http://forums.phoenixrising.me/index.php?threads/will-the-caa-support-a-name-change-to-me-cfs.6861/

Roy S September 23, 2013 at 9:30 am

And here is the profile page
where you can access the list of posts:
http://forums.phoenixrising.me/index.php?members/rescindinc.684/

SarahLaBelle September 23, 2013 at 9:53 am
Roy S

Hi Sarah,
It's on the second page of this thread if this link works for you:
http://forums.phoenixrising.me/index.php?threads/will-the-caa-support-a-name-change-to-me-cfs.6861/

Thanks Roy! That link works great.
Great photo of Rodney Dangerfield and No Respect!
Very appropriate.

Sarah

Thomas September 23, 2013 at 10:07 am

How did he die? ME related?

Nielk September 23, 2013 at 12:45 pm
Thomas

How did he die? ME related?

Tom has become another casualty of this serious, complex, misunderstood disease.

Katherine September 23, 2013 at 2:42 pm
Nielk
Thomas

How did he die? ME related?

Tom has become another casualty of this serious, complex, misunderstood disease.

Anyone know exactly what the cause of death was?

Ember September 23, 2013 at 4:26 pm

For those who might want to gratefully listen, Tom's testimony before the “ME Accountability Committee” (aka CFSAC) on May 10, 2011 is recorded here at 6:40 – 6:48:15.

Kina September 23, 2013 at 4:47 pm
Katherine

Anyone know exactly what the cause of death was?

From FaceBook:

My dear friends,
It is with a heavy heart that I share with you that our brother Tommy died this morning. As you know, he has been sick for a long time (more than 25 years!) with an sickness that left him debilitated both physically and mentally. Despite his amazing life force throughout his illness, today he apparently lost his will to fight any longer and took his own life. We believe that he is with my dad and we hope that he has found some measure of the peace that eluded him in the later years of his life. We ask that you pray for him and all of his family as we go through the journey of bringing him home to Maryland and laying him to rest. Please forgive me for sharing this news through email. We talked to many relatives all day and I could not discuss this any more today. My mom is holding up remarkably well and she and my brothers and sister join me in sending our heartfelt gratitude to those of you who offered support to Tommy over the years. I hope you will remember him from happier times. With much sadness,

Mary for the Hennessy Family."

taniaaust1 September 24, 2013 at 1:40 am

Sad, we've lost so many of our amazing advocates over the years, having to fight this horrible illness and also having to fight for justice and for truth to be told around it.

Condolences to his family.

Ecoclimber September 25, 2013 at 5:22 am

You gave a good fight for the cause Tom. Your work will always be remembered by many. I dedicate this song to you for giving so much to others.
By Eva Cassidy
https://tinyurl.com/lkxtwd5

Eco

Thomas September 29, 2013 at 9:59 am
Nielk
Thomas

How did he die? ME related?

Tom has become another casualty of this serious, complex, misunderstood disease.

Um thanks, but can anyone be a little more specific.

Thomas September 29, 2013 at 10:02 am
Katherine
Nielk
Thomas

How did he die? ME related?

Tom has become another casualty of this serious, complex, misunderstood disease.

Anyone know exactly what the cause of death was?

from @Neilk 's non-specific answer it sounds like he killed himself. Unless someone can chime in with more accurate information.

Nielk September 29, 2013 at 10:10 am
Thomas

from @Neilk 's non-specific answer it sounds like he killed himself. Unless someone can chime in with more accurate information.

This is a quote from his sister Mary on the day he died. "Despite his amazing life force throughout his illness, today he apparently lost his will to fight any longer and took his own life. "

Nielk September 29, 2013 at 10:13 am

A reminder about the PANDORA sponsored call in memorial.
on Sunday September 29th – from 3:00pm until 4:00pm in CDT. The call-in number is 559-726-1300, access meeting code 915440.

peggy-sue September 29, 2013 at 10:13 am

The statement from his family on Facebook was posted by Kina, just a couple of threads up. The information is there.

vixbright October 1, 2013 at 5:27 am

When did suicide become politically incorrect? And, especially in this case, why? Mr Hennessy had a strength of character and purpose that lifts him above most. His tireless effort in trying to forward this "unpopular" cause was truly noble. Masking the fact that he chose to take his own life rather than live so sick diminishes his life's efforts — by denying, yet again, the truly deadly nature of this awful illness. I think he was a brave and remarkable human being. His final act underscores this. RIP. ps: I am raising this as a general question, not targeting any particular person or persons.

peggy-sue October 1, 2013 at 5:40 am

This is a Memorial thread for Tom Hennessy, not a discussion of his intimate personal details.

Please, would a kind moderator tidy it up a little, so that proper respect is shown throughout?

Kina October 1, 2013 at 10:08 am
peggy-sue

This is a Memorial thread for Tom Hennessy, not a discussion of his intimate personal details.

Please, would a kind moderator tidy it up a little, so that proper respect is shown throughout?

I am not sure there has been a discussion of intimate personal details or any lack of respect on this thread.

Again:

My dear friends,
It is with a heavy heart that I share with you that our brother Tommy died this morning. As you know, he has been sick for a long time (more than 25 years!) with an sickness that left him debilitated both physically and mentally. Despite his amazing life force throughout his illness, today he apparently lost his will to fight any longer and took his own life. We believe that he is with my dad and we hope that he has found some measure of the peace that eluded him in the later years of his life. We ask that you pray for him and all of his family as we go through the journey of bringing him home to Maryland and laying him to rest. Please forgive me for sharing this news through email. We talked to many relatives all day and I could not discuss this any more today. My mom is holding up remarkably well and she and my brothers and sister join me in sending our heartfelt gratitude to those of you who offered support to Tommy over the years. I hope you will remember him from happier times. With much sadness,

Mary for the Hennessy Family."

A member asked about Tom Henessy’s death. I posted the FB post as an answer. The post came from somebody posting for the family.

Suicide carries a huge amount of stigma and sometimes people don't like to talk about it. We are taught by our families, the church, society etc that suicide is a shameful, weak, and selfish thing to do. Did any of the patients with ME who have died via committing suicide (and devastatingly enough I can think of quite a few) have any of these qualities. Think about this. Who of the people with ME that have committed suicide have been regarded as anything less than heroes or fighters. They were not weak or selfish. They struggled for years with an illness with no respite from it and in the end simply desired peace. Desiring peace is not shameful. People who eventually lost the battle in the end did so not because a weakness of character but because society, family, and the medical system failed them miserably.

In the end, what did Tom Hennessy die of — ME. He now rests in peace.

Please note, these are my own very personal thoughts and come from a very deep place. Let's leave this thread as a memorial for Tom and if anybody wishes to discuss suicide and ME, please start a new thread.

Kina.

Firestormm October 3, 2013 at 1:23 am

Published on 2 Oct 2013
After suffering from complex immunological and neurological diseases for decades, Tom died on Sept. 9, 2013. In this video, we pay tribute to the great contribution he made in neuro-endocrine-immune disease advocacy. He and others left us a heritage and an example to follow.
PANDORA

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