MECFS Assist
Becky Luscombe put together this brilliant ME take on the meme flooding the internet as of late. It's spot-on and describes our situation very well to those who still don't get it.  Please remember to give Becky credit if you choose to share the image!


via Phoenix rising, by Cort Johnson
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

The late 1980s and early 1990s 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.

(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

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, 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.

Charitable Trust to Provide No-Cost ME/CFS & FM Services in New Zealand
by Chronic Pain and Fatigue Trust

May 7, 2012

[Ed Note: In particular, this trust's intent to offer no-cost "fieldworkers to provide practical assistance for the severely unwell" should resonate with ME/CFS and FM advocates everywhere this Awareness Day. The Chronic Pain and Fatigue Trust Facebook page is HERE.]

May  7, 2012 NEW ZEALAND:
Fibromyalgia and Chronic Fatigue Syndrome sufferers around the world are looking forward to May 12th 2012 for their international awareness day. The exciting news is that a new charitable trust is launching here in New Zealand on May 10th to provide services for 120,000 - 220,000 people who suffer in this country.

Fibromyalgia (Fibro) and Chronic Fatigue Syndrome (CFS) are extremely debilitating disorders with symptoms such as extreme fatigue (unrelieved by rest), severe headaches, chronic sore throats, body wide muscle pains and spasms, insomnia, severe abdominal pain and nausea.

After 2 years of preparation and building relationships within the health sector, both medical and not for profits, the Chronic Pain and Fatigue Trust is now ready to start providing no cost services to sufferers throughout the country.

Services are aimed at achieving four main priorities;

• Raising awareness and understanding in the community

• Education of medical communities

• Education, self-management and treatment advice and support for those that suffer

• Fieldworkers to provide practical assistance for the severely unwell

The official launch is being held at Rannoch House in Epsom (Thursday 10th May) and is being celebrated by medical professionals, volunteers, other not for profit representatives and local sufferers.

All press are welcome to attend. Canapes and drinks from 6.30 onwards.

Contact Details:
Emma Nielsen
Founder & Chair
Phone 09 282 3865; Cell 021 607 661

SLyme Disease
by Amy Tan + FOLLOW | August 2003

How a speck changed my life forever

I used to brag that I never got sick. I rarely came down with colds or the flu. I had health insurance for catastrophic illness and only used it once, for surgical repair of a broken leg, the result of heli-skiing, the sport of a vigorous and fearless person.

But in 1999, all that changed. I learned what it is like to have a disease with no diagnosis, to be baffled by what insurance covers and what it does not, and to have a mind that can’t think fast enough to know whether a red traffic light means to press on the gas or hit the brakes. I have late-stage neuroborreliosis, otherwise known as Lyme Disease. The neurological part reflects the fact that the bacteria, a spirochete called borrelia burgdorferi, has gone into my brain.

My case is in many ways typical. Like many, I had little awareness of Lyme disease. I did not think about Lyme because I live in California, at least that’s where I file my taxes. For a good long while, it did not seem significant to me or to others that I also have a home in New York and that I spent weekends in upstate New York. Then again, one does not need to live on the east coast to get Lyme. You can go hiking in the woodlands of Mendocino, Sonoma, Santa Cruz, and the Sierra foothills, just to name a few hiking spots Lyme ticks and I are fond of.

But my particular interloper found me at an outdoor wedding on June 1, 1999. We were in Dutchess County, New York, a place that was lushly bucolic–complete with babbling brook and trees, logs to sit on and cool grass for walking barefoot. Dutchess County, I would learn later, also had the most number of cases of Lyme Disease in the country that year. And the particular swath I was in had had ten times the number of cases as the rest of the county.

The day after the wedding, I saw a bright red rash on my shin. I briefly thought about Lyme disease, but the rash lacked the “bull’s-eye” that most infectious disease doctors say is characteristic of Lyme disease. So no worries! My rash had a tiny black speck in the center, what I assumed was a pinprick-sized blood blister, the result of perhaps a spider bite. I avoided scratching it, and thus, I watched that dot grow more rounded. What I was watching, of course, was a nymph tick feeding on my leg and regurgitating bacteria into me. The black dot fell out but the rash grew larger and brighter red. After a month, light red splotches bloomed on my arms.

The day after I was infected, I had another symptom, a very unusual one for me and unusual for anyone in the summer. I had the aches, pain, and fever of the flu. I had not had the flu in about 15 years and was disappointed my record had come to an end. But within a day, I managed to beat it back, and I never developed respiratory symptoms–no stuffy nose or hacking cough. I thought to myself: What a great immune system I have!

More symptoms crept up, which I passed off as related to stress and airline travel–a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder. I was often tired and jittery, but that, I reasoned, was the consequence of an active life and too much coffee. Who was I to complain? I had a wonderful life, a great husband, a lovely home, a successful career.

Then my feet grew tingly and became numb. At my annual checkup, I mentioned this to my doctor. She said I had neuropathy, which is not caused by stress. I related that I had developed a strange rash a few months earlier. Could it be relevant? No, my doctor immediately replied.

Like many chronic Lyme disease patients, I was launched into a medical maze, searching for answers as things worsened. I told my husband that something in my body had broken. It was falling apart. I went to specialist after specialist, and each one found some possible cause within his or her specialty. The weirdest symptom was plunging blood sugar, going down to the 20s and 30s, before bouncing back up to normal. That so alarmed my doctors they hospitalized me. An MRI revealed 14 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time.

A CAT scan showed an incidentaloma on my adrenal gland, a small 2 cm tumor. That could be the reason for the blood sugar plunges, the racing heart, the specialist said. It could be benign–or not. An option was presented: I could have CAT scans every six months, at my expense, since my insurance did not cover preventive care. Or I could have my adrenal gland removed laparoscopically on the premise this was the cause of my symptoms, in which case, insurance would cover everything–all my tests so far, the surgery, the follow-up meds. The surgery was supposed to take an hour and a half. But there were complications. The artery to my spleen was accidentally cut off. In the end, the surgery took five hours. I was put on cortisone and the symptoms abated–but only briefly before they worsened and became bizarre.

Now I had hallucinations, what I later learned from a neurologist were simple partial seizures. I saw people walking into the room, two girls jumping rope, numbers spinning on a lit-up odometer, a fat poodle hanging from the ceiling. They disappeared after a minute or so. After the first hallucination, I did not take the others for anything but a weird brain quirk. Most were fairly entertaining. The ones with sudden putrid rat smells were not. But then there were other, more serious seizures, complex partials with an absence of consciousness. My husband said I acted at times as if I were in a trance, eyes wide open as if scared and unresponsive to people around me. I had no memory whatsoever of those episodes, and in fact, at times, my memory of things that happened just before and just after the seizure had been erased.

By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction. I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery. Thus, my novel-in-progress lay abandoned between feeble attempts to resuscitate it. At times, when asked what I was writing, to my horror, I could not remember, and I would struggle over the next hour trying to recall the faintest details.

I no longer dared get behind the wheel of a car. When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years. Why didn’t that building on the corner look familiar? Why did everything seem as though it were the first time I had been there? I easily became lost in stores, hospitals, hotels, and I would panic, certain I was losing my mind and developing dementia related to early Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone. In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.

Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department, well-known, well respected. I liked them. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease. One doctor, however, gave me a battery of tests, including one called an ELISA. I looked it up and saw it was a screening test for Lyme. There I saw all my symptoms. When the doctor told me the test was negative, I asked him about the accuracy of the test. The doctor said it was impossible for me to get Lyme in California. I said I also lived in New York. He said Lyme was so rare that it was impossible that I had it. In any case, he had not tested me for Lyme, he said. It was the ELISA for another spirochetal infection, syphilis. Wait. He thought I was more likely to have syphilis than Lyme?

I turned to the Internet, which is where doctors believe hypochondriacs catch “terminal” diseases. And there I read more about Lyme, about the inadequacies of the ELISA, especially with late-stage cases, one that is beyond a month since infection. I saw the same rash I had had four years before, read about bizarre symptoms like mine. Further sleuthing gave me the name of a Lyme-literate physician in San Francisco.

My Lyme doctor considered the history of my rash, the summertime flu, the migrating aches and neuropathy, the insomnia and fatigue. He thought lesions in my brain were significant in light of my neurological symptoms. He saw on previous tests that I had some interesting changes in my immune system. He ordered a complete battery of tests from IGeneX, a lab specializing in tick-borne illnesses, to check for not only Lyme disease, but its common co-infections, ehrlichia, babesia, bartonella, all of which can be carried by the same tick that gives you Lyme. Two weeks later, I learned I was positive for Lyme on the Western Blot, as well as on the PCR, (polymerase chain reaction) which can help detect actual DNA “debris” of the tick. My doctor told me that the tests only confirmed what he already knew.

Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. There is much more to be done before the tests can be considered reliable in every lab across the country. Unfortunately, most doctors still go by the old and unreliable standard: that Lyme is rare and exists only on the East Coast, that a bull’s eye rash and fever must be present, that you are tested first with an ELISA, which is considered a false positive if you had no bull’s eye. If you did have the bull’s eye, you must then get a positive Western Blot. That will get you about two weeks of antibiotics. Further insurance coverage of treatment and medications is denied. That is the standard recipe that has destroyed many lives.

Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction, which serves as a second confirmation of a spirochetal bacteria infection. A month later, the joint and muscle pain eased up somewhat. Two months, and some of the fog finally lifted, and I frantically wrote for long days, fearful that the curtain would come down again. After six months, I had less muscle stiffness or no joint pain remaining. After two years, I felt I was back to feeling well.

Today, I can once again write fiction, speak at conferences without notes, and walk in my neighborhood alone and without anxiety and panic. I can follow conversations, understand ironies, and tell jokes. I’ve been under treatment since 2003 and consider myself healthy, if healthy means having your life back in all the ways that matter. I still have neuropathy–numbness in my feet, which causes some balance problems. And I have epilepsy for life, due to the 16 lesions in my brain. Yep, 16 and not 14. I added a couple between the first MRI and the MRI done after I was diagnosed, during that period when the bacteria were happily munching on my neural tissue. I also have a sleep disorder that could have me nodding off even when talking and standing on my feet.

I must now take seizure medication for life, as well as medication to keep me awake. Those cost about $2000 a month, most of which is covered by insurance. Insurance will not cover my antibiotics, which I still take. When I've gone off antibiotics, the problems come marching back, one by one, the flu-like symptoms, the headaches, the arthritis. I think about four and a half years of lost time, of pain and panic. I think about our health care crisis. I think how a Lyme-literate physician and about $50 worth of antibiotics early on would have taken care of my disease. None of those other tests--the multiple MRIs, the CAT scans, the 5 hour surgery, the 10 specialists, the lifetime of meds, the required yearly visits to my neurologist–none of those costs would have been necessary. Because of ignorance, I am a burden on the medical care system.

My disease is managed, but I am not cured. Borrelia is a wily spirochete and it, finally, has an identified genotype. And so now we know that with each replication cycle, there are changes to its phenotype here and there. We know that the bacteria can go into different forms, become wolves in sheeps clothing, and evade detection and antibiotics. When I say "we know," I mean, of course, those doctors who are literate on Lyme disease, who don't cling to the notion that Lyme is rare or that the ELISA is accurate no matter how long you've been infected, who don't think that one size of antibiotic fits all.

By “we,” I also mean those who have persistent Lyme and know the enemy still within us. I am aware that the bacteria in me could one day run rampant and that my illness could progress and leave me disabled once again, unable to read, write, think, or walk. It is the reason I am building a house for the future, which will be completely accessible, with wide doorways, handrails, an elevator, level entries and exits to outdoor areas, a roll-in shower, a walk-in bathtub, lower-height counters, and a whole host of other preparations most people would never think would be necessary.

As a patient with persistent Lyme disease, I have joined a club of people with a stigmatized illness, one many doctors do not want to treat. I am lucky to have a doctor who is willing to provide open-ended treatment. I am lucky I have insurance. Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives.

I now know the greatest harm borrelia has caused. It is ignorance. That ignorance is destroying more and more people as an epidemic grows. Lyme disease is now the fastest-growing vector-born disease in the country. Much more is needed to know how to diagnose it and how to treat it.

In the meantime, my advice to friends and family is to be aware and to be informed. Realize that Lyme disease has been reported in every state in the United State, in Europe, in Asia, every continent except Antarctica. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as confirmed cases. Some Lyme researchers believe the numbers are much, much higher.


How To Avoid Getting Lyme Ticked

In 1975, Lyme Disease was named after the town of Lyme in Connecticut. People then thought it was a local disease, as if the bacteria resided only there. Today, you could nickname that bacteria after thousands of cities. Where I live, “there is no Lyme”–or so most people would say if you asked. I know otherwise. A friend biked up to the top of Hawk Hill, sat on a wooden log, and picked up a tick. He was positive for Lyme disease. Reporting of Lyme is incomplete, so if you are relying on reports, you are relying on unreliability.

I have found a way to better judge if Lyme is in the area: ask a veterinarian. They know more about Lyme than most doctors I’ve met. If they test for Lyme, they test for co-infections, knowing there is a 50% chance the dog will have at least one co-infection You can also ask people whose dogs run about in the fields and the woods. A couple I met recently said their dogs had both had it repeatedly. Another dog was untreated and died. They feared a neighbor had it as well.

If you are going into an area with deer use insect repellent, one that lasts for, say, 12 hours, and with 30% DEET. UltraThon is a good choice. By the way, 100% DEET does not mean it’s more effective, especially, if it wears off after two hours.

When going into tick country, spray your clothes a few days before with Permethrin. Wear light-colored pants to better see if ticks have glommed onto you for a ride and a snack.

Don’t lean against a tree trunk, marveling how you are one with nature. Nature may be a tick. Don’t sit on logs, wooden benches, stone walls or the ground in tick-infested areas. Ticks love wood surfaces even more than leafy ones. Recognize that Lyme ticks don’t wait until summer to be active. Know where Lyme ticks can hide on you, and sometimes these are not the obvious places you would look. They might be under armpits or the backs of knees, or even in the groin area. And if you are bitten by a tick, save it and send it to be tested. Some say you don’t have worry unless the tick was attached for over 24 or 48 hours. But how do know when the tick first attached itself to you? And why is it that my tick caused me to be sick less than 24 hours later? If you don’t see a bull’s eye around your rash, realize that about 50% of the people diagnosed with Lyme never saw the tick, and over 50% of those who actually had the rash did not see a bull’s eye.

Before you set out to be tested, be aware that the guidelines set by the Infectious Diseases Society of America are those that have left many misdiagnosed and untreated. For an eye-opening view on the politics of Lyme disease and its effect on real and very sick people, go see the film “Under Our Skin,” an award-winning documentary that is as suspenseful as a murder mystery. If you suspect you have been infected, go see a Lyme-literate physician, for example, a member of the International Lyme and Associated Diseases Society, Don’t be put off if your regular doctor raises a skeptical eyebrow. Go to a doctor who will give you the more reliable test, a Western Blot, preferably by a lab like IGeneX.

I wish I knew ten years ago all of the things I’ve just mentioned. If I had, I might have avoided getting bitten. I would not have let a treatable disease turn into a permanent, disabling, and life-changing one.

Be knowledgeable. And if you know someone with Lyme disease, be compassionate.


Please read and help if able. News from Denmark: Danish Board of Health threatens to commit seriously ill ME-patient to a psychiatric hospital. The Danish Board of Health says that the diagnosis of ME is the same as insanity and wants to forcibly remove a 23-year old woman, Karina, from her family home. This could happen as soon as May 2nd. Karina is totally bed-bound, is extremely light and sound sensitive and is too weak to talk. She is so extremely ill that there is a real chance that a move could be fatal. Karina’s parents have been trying to get permission to set up an IV at home to help keep Karina alive, but instead the health department decided that Karina is mentally ill and should be removed. The family has been repeatedly told by Danish doctors that the diagnosis of ME is not recognized. “They do not understand how sick an ME-patient can be with this disease and their ignorance can now have fatal consequences for Karina, “says Rebecca Hansen, Chairman of the ME Association in Denmark. Please help us by spreading this story on-line and to the media. We would like to get journalists interested in writing about it. 

Rebecca Hansen can be contacted at

Multiple Chemical Sensitivity caused by hypersensitivity of the brain

Written by Matthew Hogg BSc (Hons)   

Thursday, 19 April 2012 11:54

New research into multiple chemical sensitivity shows that the brains of sufferers respond more easily and more strongly to stimuli than those of healthy individuals, supporting the 'central sensitization' theory as an explanation for the illness.

Multiple Chemical Sensitivity (MCS) is a
chronic condition in which those affected experience an array of non-specific symptoms including headaches, fatigue, weakness, dizziness, cognitive dysfunction, and a general feeling of being unwell, when exposed to minute amounts of chemical triggers such as synthetic fragrances and industrial pollution.

The few scientists and physicians who have been actively investigating this disabling and increasingly common condition over the past few decades have long suspected that an initial sensitization of the brain might result in neurons subsequently firing when exposed to levels of stimuli that would normally be ignored. This would translate into someone affected by MCS having an unusually high level of brain activity when exposed to triggering chemicals and experiencing a host of neurologically-based symptoms such as those mentioned previously.
Now, investigators from The Danish Research Centre for Chemical Sensitivities at Copenhagen University Hospital, Denmark, have shown this is indeed the case by comparing MCS patients to healthy volunteers using a comprehensive set of measures, referred to inclusively as quantitative sensory testing (QST), to assess brain sensitivity and activity. 

The study involved 15 MCS patients without any comorbid overlapping condition (e.g. fibromyalgia, chronic fatigue syndrome) and 15 healthy individuals matched for factors such as sex and age.

The researchers used injections of capsaicin as a stimulatory challenge in order to study the responses of all participants, both those who suffered from MCS and those who didn't. Capsaicin is a chemical found in chili peppers that is an irritant and is responsible for the sensations of burning, and even pain, experienced when spicy foods are consumed.

Other stimuli such as pressure and heat were also used to measure pain thresholds in all participants.
It was found that MCS patients experienced a significantly greater degree of pain as a result of the capsaicin challenge compared to their healthy counterparts.
Several other measures were also consistently higher in the MCS patients although no difference in pain thresholds for pressure or heat were found.
The investigators concluded that: "Increased capsaicin-induced secondary punctate hyperalgesia was demonstrated in MCS patients without comorbid, overlapping disorders, suggesting facilitated central sensitization in MCS."
Essentially what they are saying here is that MCS patients' brains are more active than those of healthy individuals when exposed to external stimuli. Their study therefore validates MCS as a genuine physical illness and points to hypersensitivity of the brain to chemicals as the major mechanism behind symptoms experienced. 

Source: Tran MT Arendt-Nielsen L Kupers R Elberling J (2012) Multiple chemical sensitivity: On the scent of central sensitization International Journal of Hygiene and Environmental Health
Fear-free healthcare
via Matthew Smith At Indigo Jo Blogs
15th April, 2012 Indigo Jo

Recently the ME community online had to deal with the sad news of three deaths, including one of its best-known and most loved activists, Emily Collingridge (right). There were also two inquests which reported in the last couple of months, those of Lois Owen who died in 2009 and Victoria Webster who died last year. All had very severe ME and, it appears, died of its complications (the immediate cause of Emily’s death will not be known until the inquest is heard later in the year). A major cause of Emily’s final deterioration was a hospital admission in late 2009, following a period in which her condition had improved somewhat; the environment in the hospital was clearly very unsuited to someone who was highly sensitive to light and sound and needed a low-stimulation environment. A further problem with British hospitals has to do with the medical and nursing professions: the fact that there is a substantial number of people with in it who are uncaring, dismissive or abusive and it has led to many people with chronic illnesses becoming fearful or even phobic of hospitals. This simply should not be the case.

Last year, there was a book published by Jessica Kingsley Publishers titled How We Treat the Sick by Michael Mandelstam, which exposed abuse and malpractice in British hospitals. It was an excellent exposé of how hospitals treated elderly patients with a little bit of content related to younger disabled people, but it does not cover the NHS’s treatment of the chronically ill very much if at all. The journalist Christina Patterson has had a series of articles ([1], [2], [3], [4], [5]) published in the Independent this past week, her interest in the subject having been sparked by receiving inadequate care from nurses after treatment for cancer, which she spoke about in a Radio 4 broadcast. She concentrates on the quality of nursing and on what can be done to improve it, but also does not cover those who are subject to repeated, sometimes lengthy, hospitalisations, who see a variety of qualities of care depending on when they are admitted and in what circumstances.

I became interested in this as a result of hearing the story about Lynn Gilderdale in 2010; she had suffered from very severe ME (myalgic encephalomyelitis) from 1992 until her death by morphine overdose in 2008. She was entirely bedridden, was unable to speak or swallow, was in terrible pain (hence the morphine) and suffered persistent nausea, had osteoporosis and various endocrine disorders, and also had a drastically impaired memory, although this improved in the last five years or so. She required between 50 and 60 admissions to hospital, during which her mother remained with her, partly because she was terrified of hospitals as a result of traumatic, abusive experiences during two admissions in mid-1992, and partly because her mother needed to interpret the hand-signs she used to communicate (patients, including adults, often need a relative with them when in hospital for interpretation or advocacy purposes, but some staff fail to understand or accept this, as a senior nurse in Cambridge demonstrated very brutally to someone I know the night before I wrote this).

The main problem for Lynn, and many other severely-affected ME patients, was the widespread view in the medical profession that ME did not exist, or was a misnomer for a psychological or behavioural disorder, or was at worst a mild fatigue syndrome which could not possibly be as severe as Lynn’s condition. A well-known ME specialist diagnosed her with “hysteria” and handed her over to a psychiatrist, saying he had never seen anyone that ill or anyone fitting like Lynn did; a consultant on a psychiatric ward at Guy’s hospital lied to the Gilderdales that he believed ME was a physical disease, but did nothing to treat it and allowed Lynn to be abused by patients and staff. There were serious failures on subsequent occasions when she was admitted, including one where a surgeon who had performed a Hickman line replacement did not believe her when she indicated that she was in distress after the procedure; it turned out he had punctured her lung, turning what should have been a minor procedure into a life-threatening emergency which put her on life support, and resulted in a three-month hospital stay. On another occasion, who was immune-compromised and very sensitive to light and sound, was refused a side room because “protocol had changed” and had to stay on a main ward during an outbreak of a vomiting and diarrhoea bug.

Lynn was not alone in suffering such appalling treatment, and ME is not the only condition whose sufferers are affected in this way. The most vulnerable are those with rare or poorly-understood chronic conditions or those with controversies attached to them, like ME. While being wary or afraid is hospitals is not uncommon (they are, after all, places where people die), an awful lot of people with chronic disabling conditions have had repeated traumatic experiences and are afraid or even phobic of hospitals. I have a number of acquaintances with the connective tissue disorder Ehlers-Danlos syndrome (EDS), also known as Hypermobility Syndrome, the most obvious symptom of which is weak, hypermobile joints which dislocate easily. The most severely affected require full-time wheelchair use, tube feeding due to gastroparesis, and sometimes mechanical ventilation; some have lost their ability to speak and others have developed paralysis because a collapsing spine injures their spinal cord. A great many of those I know had difficulty getting diagnosed, and a long period in which many doctors suggested that their problems were “in their heads” and treated them with disdain and disbelief led to a permanent fear of hospitals, often leading to a dangerous reluctance to go to hospital, or stay there, in critical situations; the misdiagnosis can also lead to critical situations that would not otherwise have happened. A friend of mine recently wrote an article about her 13-year-long struggle to get her condition (which turned out to be EDS) recognised, during which she was referred to a team in London which is notorious for promoting psychological explanations for demonstrable physical conditions, and told to ignore her symptoms and not to associate with disabled people online or in person as it would make it look like she was “learning to be disabled”. She also noted that many doctors did not understand the difference between genuine conversion disorder (which the patient has no control over) and malingering.

Any campaign to improve nursing care and conditions in hospital is incomplete if it does not mention the terrible toll it takes on people with rare and chronic conditions. People have died, people have had their health permanently ruined, others have acted in ways that harmed themselves because of wrong advice or fear of doctors, nurses or hospitals, and others have committed suicide, wholly or partly because of trauma from medical abuse. The people who are campaigning on NHS standards should talk to some of the people affected by this and include it in their campaign. The charities concerned with these conditions, such as the ME Association and Hypermobility Syndrome Association, should also make campaigning for improved hospital conditions and against abuse a major priority. Major demands of the campaign should include:
  • Appropriate units for patients whose conditions require a low-stimulation environment, whether in terms of noise, light, chemicals or anything else. This should include separate units in major hospitals; such patients should have priority for side rooms in others.
  • Less credence should be given to psychological explanations for physical symptoms when a particular group of doctors cannot explain them; a diagnosis of hysteria or conversion disorder could lead to prejudice against them whatever they present with in the future.
  • Patients’ knowledge of their condition, and of what works and what does not in their experience, must be respected.
  • Staff should act rationally and not capriciously, share relevant information with each other and not act against each other, such that a decision taken by one team should not be countermanded by another with an excuse like “Dr so-and-so is not here now”.
  • Patients should have the right to have a relative stay with them if necessary.
  • Charities should act in the interests of those they purport to represent, and not endorse harmful advice from “on high” or useless research
  • Medical students must be educated about “rare” disorders like EDS, such that they could spot it, even if they lack the resources to treat it (or its complications) adequately. This is vital to ensure that, for example, parents do not face wrongful accusations of harming their children when they present with injuries or other complications from the condition.
  • There must be a robust complaints procedure so that staff who lie to patients or their guardians or are cruel or dismissive are subject to appropriate sanction, or dismissed
  • Medical and nursing students must be educated about the rights of their patients to be treated with respect, believed about their symptoms and concerns, not subject to cruelty of any kind, and not made to fear hospitals, medical staff or medical treatment in the future.
  • All the demands related to improving care for the elderly and others with disabilities, such as those related to toileting and feeding, apply to this group of patients equally.
Hospitals, clinics and other medical facilities should be fear-free for patients as far as the behaviour of the staff is concerned — the kind of behaviour my friends tell me they have witnessed from doctors and nurses (and members of related professions, including a particularly unpleasant tale one of my friends told me about an optician) would get a minimum-wage shop assistant sacked. There must be no excuse for highly-paid professionals to behave in a way that would be unacceptable for a much less skilled, and less well-paid, worker. There needs to be a concerted campaign for fear-free healthcare, care that does not worsen anyone’s condition and does not leave people who will need to use the health services on a regular basis traumatised and fearful to do so.

“Fear-free Healthcare” was originally published on Indigo Jo Blogs — — on 15th April 2012. Republished from Indigo Jo Blogs with permission from Matthew J Smith, author. All rights reserved.

ME Campaign to Create A Centre of Excellence in UK

'Let’s Do It For ME Campaign' is a patient supported initiative to create a Centre of Excellence in Norwich, UK. After just a couple of months, they are a third of the way to their goal of  £100,000. Check it out here:

Unstable at the Core? New Study Looks at ‘Genomic Instability’
via Phoenix Rising

The new National CFIDS Foundation study will determine if something called ‘genomic instability’ contributes to chronic fatigue syndrome. Dr. Henry Heng found surprisingly high levels of significant chromosome alterations in a set of Gulf War Syndrome patients and now he’ll be looking in ME/CFS patients. Get the scoop on this intriguing research in this Phoenix Rising blog.

BMC Med Educ. 2012 Apr 3;12(1):19. [Epub ahead of print]
Do you think it’s a disease? A survey of medical students. Erueti C, Glasziou PDel Mar CVan Driel ML.

Almost 200 medical students at Bond University in Australia were polled as to whether chronic fatigue syndrome is a disease or not. (Disease: “an unhealthy state of body or mind: a disorder, illness or ailment with distinctive symptoms, caused eg by infection”)

Surprisingly 75% of them thought it was a disease. That was in contrast to a study which found that 21% of doctors thought ME/CFS was all in the patients head, 29% who weren’t sure and 50% who disagreed with that statement. Interestingly, the authors noted that 30 years ago there was controversy over whether depression was a disease. Maybe the next group of physicians and researchers will be a bit more enlightened than than the last.