Fierce Advocacy: International Awareness Day Founder, Tom Hennessy Talks (May 2008)

The CFS/FM support groups perform a lot of vital functions for CFS/FM patients; they provide advice, physician and legal referrals, emotional support and they advocate for change usually on a bare bones budget. Often run by people who themselves have CFS/FM they are the bread and butter of the CFS/FM community…and there is some fear they are fading. Dr. Bell has referred to the diminishing activity of CFS/FM support groups over time – something he thinks has dangerous implications for the CFS/FM movement as a whole.

In this series we asked the leaders of these organizations to tell us about these bedrocks of the ME/CFS community; how they were formed, what issues they are engaged in, what opportunities and pitfalls they are facing, how they are doing and what they believe are the critical issues facing the ME/CFS community.

Tom Hennessy

Tom Hennessy The late 1980’s and early 1990’s were a different era. Chronic fatigue syndrome (ME/CFS) made the cover of Newsweek and major articles appeared in Rolling Stone and major newspapers across the country. CFS support groups sprang up out of nowhere. The first scientific conference on CFS was attended by hundreds of doctors and researchers.

It was a heady time and Tom Hennessey, a former advertising executive with a knack for a bold phrase, stepped up front and center. An ‘in your face’ advocate outraged at the treatment CFS patients were getting Tom would  go on to push the medical establishment’s buttons again and again.

Foreseeing the damage the Chronic Fatigue Syndrome name would wreak he demanded, not asked, that the name be changed. In an attempt to unite CFS patients and give them a voice in government he built a ‘virtual’ lobbying organization called RESCIND. A dynamic figure he played a major role in creating Lobby Day, tabbed May 12th as International Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and called for CFS, GWS and FMS organizations to unite together to fight the destructive myths fobbed on each.  Known as an ‘angry activist’ Tom turned his barbs both at the government agencies and the many aspects of the CFS community he disagreed with.

Tom’s advocacy efforts were , however, cut short. A severe relapse in the early 1990’s left him bedbound and in horrendous pain and needing to safeguard his increasingly precarious health. Over time RESCIND slowly rescinded into the background and Tom’s influence waned. He stated he hasn’t posted to the main CFS message board, Co-Cure, in over five years. When he does attempt to post his often inflammatory and sometimes profane posts are at times rejected.

This was not always an easy interview for Tom or for me; each session brought pain for him and at times anger for me when I happened to step into the heat of his almost biblical blasts. Tom is nothing if not sure in  his beliefs – a surety he still demonstrates with considerable passion. He may or may not be right in his conclusions (or methods) but he had (and still has) a uniquely powerful voice that CFS patients can only rue that  this illness has muffled.

What was your background before you came down with chronic fatigue syndrome (ME/CFS)?

Sales and advertising was my job for two decades. I did a national campaign for Subaru that inspired their “official car of the US ski team” that ran for 17 years. I did a program for Marriott hotels that used a Gold Gambits card to use for discounted rooms and upgrades for frequent guests that is still running 25 years later. I was working on a program for BMW to upgrade their customer service when I got sick. I had seen how the Japanese work up close and personal while living in Japan from 1968 to 1972. My BMW friends laughed at me but the Japanese ate BMW’s and Mercedes lunch for the next 15 years.

What happened when you came down with chronic fatigue syndrome (ME/CFS)?

I was a hard charging, full blown Yuppie when I collapsed 20 years ago this month. Just 4 days after the infamous stock market collapse! I had a pretty severe flu but I was still working 12 hours a day, 7 days a week. I was a BMW sales manager in Marin County, California, just over the Golden Gate Bridge. I was making 6 figures and I had a new BMW company car and I was planning to start a computerized database for people to buy and sell cars, boats, motor home and motorcycles – sort of like a dating service for yuppies involving anything with a motor. I had possible investment bankers, several hundred clients – life was great! Except I had constant sore throats, chronic mono, and I just didn’t feel well. I couldn’t get restful sleep.

Then one day, a fellow salesman offered to pay off a loan to me, by taking me out to dinner. We drank a bunch of margaritas and ate ceviche and raw oysters. I went home to sleep it off – the next morning I couldn’t move. I felt like I had been given a Rodney King style beating the night before. I have hardly gotten out of bed again for the past twenty years. The crippling, burning, searing nerve pain is still my worst symptom but with the exception of raccoon eyes (very black deep circles in my eye sockets) and totally atrophied muscles, I don’t look quite as sick as I claim to be.

You had a real knack of being at the right place and the right time with regards to major events. How did your involvement in chronic fatigue syndrome (ME/CFS) advocacy start?

I had been mostly bedridden for 18 months. I was the only male present at a San Francisco group meeting in 1989. I was asked to be a back up speaker at the very first international “CFS” medical conference held on April 15, 1989. After the scheduled male speaker cancelled only 4 days before the conference I was asked to provide a 15 minute speech on what it is like for a lay person to “have CFS”. I ended up talking before about 600 people including all the top research docs and many press and patient advocates.

I had several flip chart pages..and one was the infamous iceberg with only 5% showing above the waterline. I said that there were probably 250,000 homebound or bed bound people with M.E. and that there were probably 500,000 people who were only able to attend work or school part time.  And that there was the wide part of the iceberg, that was probably 5 to 6 million people who were one viral, bacterial, or physical insult away from complete and crushing disability….. I said ‘at a cost of 35,000 dollar salary per person, since many were nurses or teachers. This disease was costing the US economy approximately $9 billion per year…

(Editor’s note: Fifteen years later a study indicated that Tom was eerily close in his estimates; the direct economic costs due to CFS in the U.S. were estimated to be 9.1 billion dollars a year.)

I gave an “in your face” speech saying that we are SICK, often deathly ill and we are NOT fatigued!” I said, “if you do NOTHING else today, then lock the doors, get together and knock heads and come up with an ACCURATE definition and CHANGE THE GOD DAMN NAME!”. This got a HUGE response, and all the major media ended up interviewing myself and Melinda Paras, a gay, Latino woman who gave an equally moving and riproaring speech.

Many of the docs and organizers felt that Melinda and I stole their show, but we didn’t ask anyone for an interviews. It was the response from the audience that piqued the interest of the reporters from the Wall Street journal, the New York Times, the LA Times, and many local and national TV reporters. We got front page coverage in some of these papers, and my “career” as an ME advocate was off to the races.

The North Carolina group was represented by Ms. Karen Freese, who was their editor. Their little Chronicle was 4 pages of Xeroxed sheets stapled together. She asked me to be a contributing writer or editor, and I told her that I would be bedridden for months JUST from speaking ONE time at the “CFS” conference.

This really was a different era for us with regard to media exposure. We were a hot item and got a lot of press, we made the cover of Newsweek and Rolling Stone had a major article and you showed up several times on Larry King. How did the Larry King show happen?

It turned out that Cheney and Iverson were delayed on a flight. There was a huge thunderstorm in D.C. and the radar was knocked out at least one of the D.C airports. I had called in when they ran the ads about the show, and said “PLEASE do not say it is all stress, all whiney white women, etc. Tammy Haddad, Larry’s executive producer who I later found out had Lyme disease, called me back and asked if I had a book out. And I said, no, but I do have newspaper articles with my pictures on them. She said “fax them in” and 5 hours later I was on the air.

They invited me back six months later for another show. That one was with Alana Stewart, the ex wife of Rod Stewart and George Hamilton. That show got pretty heated when I claimed that “many of our brave veterans are returning with very similar symptoms as all these ‘alleged whiney white women’ who can NOT handle stress!” I went on to say, that “If these highly educated, mostly male, stunningly victorious soldiers who only fought for four days, could come down with this terrible illness, then maybe the NIH and the CDC will be forced to stop telling lies about it.”

I got TONS of mail from all over the world.

You have a very severe problem with pain. In one conversation with Dr. Alexis Shelekoy in the early 1990′s you noted “I feel like someone has twisted every nerve and fiber in body into braids, then beaten to within an inch of my life, all day, every day of my life. it is brutal beyond imagination”. How is your pain now? What can you do to treat it?

The doctors told me that I was taking MORE pain medicine than a dying cancer patient who’s tumors were crushing his very bones.

I need to take morphine daily to stay alive. For 11 years, I took up to six patches of Fentanyl duragesic patches every three days just to stay alive. The doctors told me that I was taking MORE pain medicine than a dying cancer patient who’s tumors were crushing his very bones.

I asked the doctors and pharmacists, “Do I sound like I am drugged up? Am I not lucid?”, and they replied that I was one of the most articulate patients in their practice and when I was drug tested, it always came back “normal therapeutic levels”. This means that my pain receptors were so inflamed that I really WAS in the excruciating, burning, stinging nerve pain that I claimed to be in.

You had a central hand in creating Lobby Day and you choose May 12th as the day to honor ME/CFS. Tell us how those got started.

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. The reason I wanted a “lobby day” was because I had seen my father getting abused on a daily basis by Congress calling for a “windfall profits’ tax in good time, but NO bailouts in bad times for oil companies.

ONE stroke of the congressional pen could get us millions of dollars of funding…or get us stricken from getting ANY funds for research at NIH. I knew these facts and that is why I pushed for a lobby day since 1988! I wanted to pick a spring or fall day for our “awareness/lobby” day. Most of us really sick ME patients are too ill to leave our homes most days and we just can’t go outside or on a trip to D.C. in the summer or winter months. I also wanted it to be International. May 12th is still bigger overseas than the US.

I wanted to pick a spring or fall day for our “awareness/lobby” day. Most of us really sick ME patients are too ill to leave our homes most days and we just can’t go outside or on a trip to D.C. in the summer or winter months.

After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to look up his hero’s Birthday, and lo and behold, May 12th, was Florence Nightingale’s birthday. She was the founder of the first ever school of nursing, and she fought for 35 years for justice for sick soldiers of the Crimean war. She inspired the Swiss Investment banker Mr. Dunant to found the International Red Cross. He did so in HER honor. At the invocation of the IRC he said, “it was the tremendous work of Ms. Florence Nightingale in the Crimea, that inspired me to found this noble organization”.

She put the first elevator into a hospital, so that badly broken and burned soldiers could be put on stretchers and lifted up to the next level without having their wounds made worse by carrying them up steps. she put the first nursing station in the center of each floor, with cords attached to bells, so that fewer nurses could attend to more of the sick and wounded. The injured were instructed to ring the bell IF they needed help, but to leave the nurses alone, if the patients did NOT need immediate help.

She contracted an M.E. type illness (thought to be brucellosis) at age 35 and she was bedridden for the next 50 years. She still had potentates and kings come to her bed for advice, and to pay her homage. She demanded that the lights be low in her room and ONLY one visitor at a time. I decided that her birthday May 12th would be the day.

This Is the 15th anniversary of May 12th this year. You can find more info at www.rescindinc.org.

You founded RESCIND (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders) in 1992. What was RESCIND about and what happened with that group? 

RESCIND, Inc. was intended to a “virtual” non-profit corporation. People would stay in their own home towns and work to advance our mutual interests in the best way they could. It was designed to be mostly a central web-site/clearing house for information. 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

Sadly, I was too overwhelmed with incoming requests and enthusiasm for both “changing the name of CFS” and getting May 12th off the ground. I pushed too damn hard and collapsed severely in the spring of 1994 after I caught the flu on a flight from Florida. I’ve been disabled and housebound ever since. I’m not alone. Most of the groups that worked on these issues in the 80′s, and 90′s are long gone – all burned out.

The CFS research program was centered, under the leadership of Dr. Straus, in the National Institute of Allergy and Infectious Diseases (NIAID) for many years. It seems like we got off on the wrong foot there – Dr. Straus ended up being no friend to CFS. You met Dr. Straus – what was your recollection of him?

Dr. Strauss called me one afternoon in the spring of 1988 and he was EXTREMELY dismissive and condescending. He started the call of by telling me x that he himself was “very fatigued” from just getting off a plane from Italy where he had been speaking at a conference on AIDS, a REAL disease, (HIS emphasis, not mine). He went on for several minutes about how the newly renamed “CFS” wasn’t even a real disease, and if it was, it would disappear in a few more months, or at the most, a year.

When I told him that I could barely roll over in bed, that I couldn’t often eat solid food, that I often needed to drink through a straw, and that I was too weak to get to the store and purchase the green veggies to make the juice, to drink through that straw….he said, “I don’t have anything to help you with. Sorry, but, hey, GOOD LUCK!” and he hung up on me….

Very early on you were almost prescient about the multidimensional nature of this illness. Most people concentrated on the immune system but you believed it was more complex than that. Tell us about your ‘train track’ theory. 

One rail is the immune system, one rail is the central nervous system. The railroad ties are genetic predisposition, pyschological predisposition, how one handles stress, exposure to viruses, exposure to toxins, diet, sleep, physical insult, death of a family member or close friend.

I said that the train engine is your brain, the train cars are your body. if the train hits an area of track where there are some rotten railroad ties, the train can pass over them, IF it slows down, but if you put some BAD fuel in the train and the engine hiccups or bucks as it passes over the rotten part of the railroad ties, it can buck and derail and that the hardest headed, hardest charging workaholics derail the worst.

I was really struck reading Rik Carlson’s excellent book (We Aren’t in Kansas Anymore) of his accounts of his travails trying to maintain his disability benefits from his insurance company. He succeeded for quite some time but in the end had to face the music and allowed them to buy him out. It’s a dark, dark side of the medical establishment. You also had a difficult time getting disability. 

It took me 2 and 1/2 years to win my SSI disability case. I had to pay a lawyer 4,000 dollars back in 1989. I had a 4 inches thick file of medical records. My two “case workers” from Social security told the judge that “we are here to protect Mr. Hennessy’s rights”, and then they spent the next hour telling the judge that anyone this smart and this organized could not be disabled as I claimed to be and that the judge should deny my claims. They NEVER said this to my face before the court date. I finally won. Three months later I got my first check but it took two years more before I got Medicare.

Ninety percent of CFS patients get rejected the first time. You need strong diaries and consistent medical records to get to stage II. That takes 6 to 9 months, and then 70% get denied. Then stage III is the ALJ or administrative law judge stage. The system is COMPLETELY stacked against us. I have been labeled as “angry” – damn straight – what the average ME/CFS patient has been through is a crime against humanity.

They put people in vans outside of claimant’s houses and if they find them mowing the lawn they take a video and then go to the judge and say “this guy claims to be disabled, but we have tape of him mowing his lawn”. The judge denies the claim and the person runs out of money and then commits suicide. I have seen this dozens of times with my own eyes.

If anything private insurance is an even darker side of the medical establishment. This is an issue you  have a personal experience with and a family connection to.    

The big multinational insurance companies have literally billions of dollars invested in portraying us as mentally ill malingerers who are out to defraud them. Our corrupt congress has allowed big donors to write laws that say “if you are physically ill, they have to pay you disability until you are age 65! – but if you are declared MENTALLY ill, they can either deny your claim completely, or just pay you two years TOTAL, and then they can let you starve to death. Rosalynn Carter, President Jimmy Carter’s wife lobbied for parity between mental and physical illness from the early 1970′s. Ted Kennedy has lobbied for this as well and Hillary Clinton. We STILL don’t have it!

We face an uphill battle – these big insurance companies can not afford to pay us 55% of our former salaries for the next 40 years! THAT is why they are trying to get an internationally recognized neurological Disease Myalgic Encephalomyelitis, which has it’s own WHO code, to be thrown out. To the insurance industry, this is a life and death matter.

Many patients claim that “CFS” is ONLY a physical disease; to the insurance industry, it is ONLY a mental disease. I think it is a system wide, total body, mind and body disease but MONEY talks, and Cort, imagine if you were the CEO of a large insurance company and you had THOUSANDS of claims for long term disability and YOUR bonus depended upon how many claims you could AVOID paying, or EVADE paying! You would look for ways to “delay, deny and hope they die!” – just like these people do.

It’s one thing to say insurance companies have an invested interest in making us look like mental cases. It’s quite another to say they’ve manipulated public policy in order to do so. Maybe I’m just naïve in this matter but is there any direct evidence that insurance companies are trying to get myalgic encephalomyelitis reclassified as a mental disorder? 

The insurance industry alone has more than 1,000 registered lobbyists. Congressional staffs are overworked all the time and they are in constant search of campaign money and big corporations are there waiting with big checks and they say “it would be really great if law XYZ had these few paragraphs tucked in there somewhere” and if you get those paragraphs in, there is more money were this comes from….

Sad to say, that is the way of the world these days. I have seen it up close and personal for 35 years so it doesn’t even faze me anymore. As I said my dad was the chief lobbyist for J. Paul Getty for more than a decade. But far too many middle Americans still believe in justice, fairness, equitable treatment. Cort, that hasn’t happened in decades, and sadly, it won’t happen anytime soon.

Congress passes very complex and detailed and verbose laws that are FULL of loopholes that often give the exact opposite effect of the name of the bill being passed. An example is the “clean coal act”. They changed the word “waste” to “fill” to get around EPA laws. if the EPA says that it is immoral to allow big coal companies to blow the top off hundreds of mountains and let all the heavy metals and other ‘waste’ ruin downstream rivers for hundreds of miles leaching toxic heavy metals and poisons into the rivers and drinking water of poor people, then they can’t call it “waste”. The word waste triggers all kinds of inspections and re-inspections and filtration plants, and constant water testing, and restocking rivers from all the fish and wildlife killed. So now it’s called ‘fill’.

You were one of the first advocates to propose that advocates for diseases such as ME/CFS, Gulf War Illness and Multiple Chemical Sensitivity gather under a big tent and marshall their efforts and work together. This makes sense to me; all these diseases need better representation and numbers add up to power but that didn’t go over well. What happened? 

I came up with the crazy idea in 1991 of trying to link up “whiney white women who can’t handle stress”, with some of the most educated, highly trained, completely voluntary, almost all male US forces returning from the first gulf war. These soldiers wanted NOTHING to do with “CFS”. Many people with MCS want NOTHING to do with FMS, or CFS.

All seemed to fear that the other group will get their research money, their press time, their public sympathy, etc. The infighting is vicious and wears good people out. I was not trying to do anything other than link people with CIND (chronic immunological and neurological diseases) for ONE day per year to lobby the press and Congress for more and better research, and fair treatment.

I recently saw an article about Dr Daniel Clauw who used to practice at Georgetown. His article was titled something like “Overlapping conditions of MCS, FMS, GWS and ME/CFS”. This could have been lifted WORD FOR WORD from my website in 1992! I was hammered relentlessly back then for daring to compare and contrast these disorders. So it goes….

You’ve long been one of our most vociferous voices against the name ‘chronic fatigue syndrome’ . In the first international meeting to discuss the name change in 1989 you said “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, 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!”

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. The few ME experts that were on the panel in 1987 refused to sign off on that new definition and were overruled by Strauss and company. Even Tony Komaroff admitted to me after years of my berating him that “Yes, I did vote for the term CFS, Tom, and I have regretted it ever since”.

You like the name myalgic encephalomyelitis and you hate the name chronic fatigue syndrome yet you’re against the proposed name change, ME/CFS by Rich Carson and his backers*. Why is this not a suitable first step toward getting rid of the chronic fatigue syndrome name?

My point is that if you say “ME/CFS”, you KEEP the lousy “CFS” that 90% of patients hate, really despise and then add ME and let the reader chose either -opathy or –it is. The insurance companies will pick -opathy 100% of the time and they will use this to claim we are mentally ill and then use that to deny claims.

 I would hazard a guess that the number of patients receiving disability benefits for myalgic encephalomyelitis in the US is vanishingly small. I believe referring to CFS as ME/CFS would only help them while retaining the benefits that CFS does bring; research and social security benefits.. The Name Change Campaign Advisory Panel – Dr. Cheney, Dr. Komaroff, Dr. Jason, Dr. Bell, Dr. Lapp, Dr. De Meirleir, etc. all champions of CFS patients for many years, and all knowledgeable about insurance issues – were very clear on the need to retain CFS in the name and all recommended using myalgic encephalopathy not myalgic encephalomyelitis??

WRONGAMUNDO there Cort. I just explained it to you slowly and in plain English. ME-opathy …WRONG…too damn generic and funds are cut off after two years. BAD idea. Myalgic encephalomyelitis. WHO code for 30 years. Actual neurological illness. We have a petition online with more than 8,000 signatures. I have read tens of thousands of letters from all over the world.

CFS is a pile of crap. It is an artificial construct of some people with tiny brains. It will be looked back upon in history, much like George W. the magnificent, the amiable dunce who currently occupies the White House and CFS does NOT guarantee anyone gets disability. There are only TWO ways you can get social security. You have to be UNABLE to perform any job in the US economy for a minimum of 12 consecutive months OR have an illness that directly leads to your DEATH!

In private disability contracts, there are usually two categories as well; you can either not perform your PAST job for at least 12 consecutive months, or that you are PHYSICALLY disabled and unable to perform any job in the US economy. The big insurance companies do NOT care what the label is. They just don’t want to pay money for decades, when many of us wax and wane with our symptoms. If we were ever paid legitimate benefits, they would go out of business, so they try to paint us as mentally ill malingerers, and the actions of many of us, sure give them LOTS of ammunition to use against us.

Cort it is your newsletter but you could not be more wrong your life depended on it. Please go to my website and scroll down to the M.E. petition and read at least 10 different posts from people who wrote actual paragraphs next to their name. You, Komaroff, Cheney, Bell, all of you have your heads in the sand!

I have been proven correct over time more than almost all of these fools and my friends are dying because of this awful name and if all these $%^%&ing mental midgets change the name to ME/CFS we will no respect from anyone and surely the insurance companies don’t give a shit. They will continue to deny legitimate claims.

You guys are so screwed up. You are like little lobsters sitting in a pot of lukewarm water and the corrupt insurance companies are turning up the heat and the those of us who are smart have been trying to warn you for 20 years!

CFS is already often treated as mental disorder by insurance companies but at least CFS is embedded in the scientific literature and in a Social Security Ruling and in our society. As a disease it’s getting increasingly good press. You’re proposing the name be changed to a condition (nervous system inflammation) the research reflects is not consistently present, that generated almost no research in the fifty years or so it was the name of this disorder and that is perceived in a worse light in Europe than the CFS is in the United State. Yes it has WHO code but that doesn’t seem to have helped much; there’s no essentially no governmental support for non-behavioral research in Europe. So how is changing this diseases name to  myalgic encephalomyelitis going to do any good for anybody?

Cort, here is my answer to the “fair name” plan. M.E. it is does have a WHO code as neurological illness. For “CFS” being embedded in anything…it is embedded in misinformation. And it bastardizes any patient cohort it is involved in, and damages or destroys any data set that is used for alleged scientific purposes.

As one doc said, “CFS” can mean whatever you want it to mean. My personal doc has NOT used the term “CFS” on any medical form for me, In the past 7 years. I am NOT proposing a “name change” per se. what I am saying is what MOST patients and true M.E. docs around the world say. ….”We had a great and accurate definition from dr. Melvin Ramsey decades ago.

“Chronic fatigue” has NEVER gotten good press, and it barely gets any press now, good or bad. It is a terrible name, and I said that the emperor had NO clothes, 20 years ago. And they all know in their hearts that I was telling the truth to the powers that be LONG before any else did.

And we don’t need the term “CFS” now. It messes up everything it touches. And good MRI’s can tell that YES, there are signs of inflammation all over the place. And the fact that there is little or no biological research is a crime against humanity! And the name M.E. it is SOUNDS scary! MS  (multiple sclerosis) was considered the work of the devil and a women’s weak and neurotic mind for at least 150 years!

The current Democratic congress is working towards a parity between mental and physical illnesses, but so far, nothing has passed. As long as current rules apply, mental illnesses get a MAXIMUM of two years lifetime disability. Virtually NO M.E. patient that I know of who has passed 2 years of disability ever works again. So, this current paradigm is often a ticket to homelessness and death for FAR too many of us.

Social security rulings don’t meant shit. Each case is decided on the merits. SS disability is ONLY paid, if you can not perform ANY job in the US economy for one consecutive year, OR you must have a disability that will directly lead to your death. You can look It up!

We’re going to have to disagree on several things, the importance of the 1999 Social Security ruling, whether or not CFS is getting better press, whether MRI’s have shown inflammation consistent.ly, and whether or not ME/CFS is a better name than CFS but let’s move on. Since we began this interview I heard you were doing better. What’s going on and do you have any plans for RESCIND?

It’s been a brutal 30 years. I started getting double vision back in senior year in college. I was a work hard, party hard kind of guy. I had been bitten by close to 80 fleas in the very first week of senior year – our band had a beach house right on the New England waterfront. It turns out that I contracted what is now called Lyme disease right back then. But no one knew what it was. It seems that “chronic Lyme disease” is really the product of a secret biological weapons program, that got out of control. It turns out that I am positive for babesia, bartonella, lyme burgdorferi, cat scratch fever, as well as heavy metal poisoning, chronic mercury poisoning. severe obstructive sleep apnea, severe neurally mediated hypotension, severe fibromyalgia syndrome and a few other medical conditions.Seven years ago, I found Dr. Alan R. Vinitsky. He has worked slowly and meticulously, month by month to strip away my old mercury fillings, he has gotten me to take clay baths for two years, once a week to leech out old bits of heavy metals in my tissues from my days cleaning oil tankers in the  Merchant Marines.

As I told you, my dad was the chief lobbyist for Getty Oil companies worldwide, for the last 10 years of his Getty career. Anywho being the oldest son of this workaholic, I wanted to earn my college tuition. If I worked on a competitors ship I was “allowed” to work the dirtiest job on the ship…since I was one of the “bosses” kids, I got the worst jobs, one of which was cleaning out the bilges an boilers of supertankers…WHILE they were underway.

This got minute specks of black and grey heavy soot and metals into my lungs and then I would take a shower after my shift and I would have black film coming out of my nose, and out of my armpits. (much like a coal miner). It was AWFUL work,. but it paid $17.50 an hour when the minimum wage was less than 2 bucks. In retrospect, I wish I hadn’t taken that job  but I did .and i was able to pay my way through college, and not burden my parents with further debt.

About 8 months ago, I was able to start walking a mile a day. …I began to do light stretching … This time, the Ambien worked and I began to get restorative sleep for the first time in 30 years!

I worked my ass off, 7 days a week, 14 hours a day for the next 15 years! I worked TOO hard. and then I partied too hard and with the tiny bits of black metal in my body from the nasty jobs on the oil tankers, and too many bad fillings in my teeth, and four separate types of bacterial infections from my encounter with fleas I was a sitting duck for some other type of insult. and for me, it was the neurotoxins in the raw oysters on the night of October 23, 1987.. As I described to you in my train track analogy, the toxic raw oysters, were probably the last straw that broke the camel’s back.

But, once a week, magnetic clay baths, in pretty warm water, left a black film around the tub, that looked a LOT like the black film that was on my armpits and nose back in my oil tanker days.

I also am taking Chinese herbs, and low dose antibiotics and anti malarial drugs. About 8 months ago, I was able to start walking a mile a day. I got up to one mile in the am and one in the pm…..I began to do light stretching and my doctor gave me an Rx for Ambien for occasional use for re-regulating my sleep. This time, the Ambien worked and I began to get restorative sleep for the first time in 30 years! I wear a chin strap made of neoprene at night…..and I sleep MUCH better now. I go to sleep around 10 pm and I wake up at 6 pm. for 20 years I could only wake up at 6pm and go to bed at 6 am.

I am now working to Revive May 12th, and RESCIND, Inc. and we are working to make our website a portal for advertisers. So, I am quite busy. I don’t plan to be too much of a thorn in the side of the NIH and the CDC, but I will still speak out, when I see blatant injustice.

13 comments

{ 11 comments… read them below or add one }

Nita Thatcher September 11, 2013 at 3:11 pm

Rest in peace, my friend. You will always remain on our list of fierce warriors who fought for all of us.

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neelu September 11, 2013 at 4:38 pm

The ME and Lyme community have lost a brilliant advocate, but I hope the legacy of articles and interviews such as this live on for a long time.

The article suggests Thomas’ health began to look up with treatment- does anyone know what went wrong in the run up to his death? Did he experience any relapse or deterioration after the 2008 treatment?

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Bam Carle September 13, 2013 at 4:07 pm

Neelu: that’s what I’d like to know, without being a “nosy, busy-body” type. But I imagine a lot of his friends also are suffering from the same or similar health issues as Thomas did, myself included. Fibromyalgia was finally diagnosed for me, in addition to chronic EBV, which I got in college and was stunned to learn that Mono can be dormant for 25 years and can then come back.
RIP, Thomas. You will be sorely missed.

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donna kuhn September 11, 2013 at 5:04 pm

rip

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Shane Carlson September 11, 2013 at 9:01 pm

A very sad day. Tom’s fight is over but the example he set should never be forgotten.

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Blair Miller September 12, 2013 at 11:29 am

Tom was in. A horrific car accident in Boca Raton Fl driving to the emergency room back in 2007/8.I was introduced to T by Marly Silverman we became close friends. Despite my health having” ME”severe fibro ddd etc I would visit Tom in the nursing home he was living in at the time I drove him to dr apts. Waited while he had hand surgery. We would spend countless hours discussing Health issues.our mutual love of music & more. I do know how he passed. It is on Facebook & the newspaper here in Boca Raton. He simply couldn’t take the torment of pain. I’ll miss him greatly

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Bam Carle September 13, 2013 at 4:08 pm

Thank you, Blair.

Sue Marie September 12, 2013 at 5:57 pm

I had a couple of CFS newsletters who mentioned this man and I had to see what he was all about.
A true inspiration that will be sadly missed.

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Jim O September 23, 2013 at 12:25 pm

I knew Tom from 1972 until his death. We shared a dorm and a house in our college days and traveled together across country. I can tell you that this man was brimming with ambition, grand dreams, high energy and a hilarious sense of humor. He had great and positive vision of the future and the intelligence, courage and personal ability to achieve it. If he had not been waylaid by ME and its associated disorders, I am confident that he would have been living on the beach in Malibu and flying his own jet. He was genuine, generous and one-of-a-kind. My prayers go out to his family and his wide circles of friends, fans and admirers. He has earned his peace.

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SanDiego#1 September 30, 2013 at 3:59 pm

As I have said in previous comments- I did not know Tom. WHAT AN ORIGINAL !!!!!
We have so many people that have this illness.
Sorry but I cannot let the Dr.that specialize in ME get away from the wrath.
They make themselves nonaccessable because of their fees and most will not bring anyone else into their practice and teach them-Don’t want to lose that dollar.
I have had 2 prominent ME Dr. tell me they refuse to train another Dr. to take over or join their practice WHEN THEY HAVE DONE THE RESEARCH. How selfish can anyone be. Think how many of us including Tom may could have been seen and helped. MANY ALSO DO NOT TAKE INSURANCE .IT IS A GROUP DEFAULT PROGRAM!!!!!!
REST IN PEACE TOM.
“SOME PEOPLE DIE WITH THEIR MUSIC STILL IN THEM”.

SAN DIEGO #1

THE AVERAGE PERSON WITH THIS DISEASE CAN’T AFFORD ANY OF THEM

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Izola August 6, 2014 at 12:59 am

Tom: You are so very missed. May your spirit sail freely the universe. Thank you for your passion and prescience.

So, when ARE we going to CHANGE THE GOD DAMN NAME!” and get our experts to bring in associates and train them. When will they have a system to treat some of us by accepting our insurance when we have no riches (Thank you Dr. Chia, you already do.)
Stand Up, Stand Up. We need to refer back to Tom for wisdom and strength on occasion.

THANK YOU ALL YOU WARRIOR/ADVOCATES THANK YOU TOM

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