Living An Irony, Still

Living An Irony, Still

By John Herd
June 24, 2012

Many years ago I went to my internist for a routine checkup.

While seated in the waiting room I was asked if I’d be a healthy control for a research study and fill out a questionnaire. I agreed to do so. It was a multi page questionnaire inquiring about how I was feeling. At the time I considered myself to be feeling pretty good.

Life was better than good; I had a great job working as a medical photographer for a highly regarded hospital and a rapidly growing medical illustration freelance business. So too did I have a fun social life, my love of sailing, playing tennis, traveling, etcetera. Life was a blissful roller coaster ride of high energy output. I was thriving.

Part way through the questionnaire was a question asking if I regularly felt fatigued. Well of course I was; I was working around 90+ hours a week and living a non-stop life outside of my work.

Then came the phrase “chronic fatigue syndrome.” My initial thought was, “What the (____) was that. In my work I’d seen thousand of very sick people with horrible diseases; that chronic fatigue syndrome didn’t even sound like a real disease.

A couple years later I was suddenly stricken with severe symptoms that the doctors initially felt might have been caused by a stroke, brain tumor or multiple sclerosis. One side of my body was numb and my brain was so muddled I couldn’t remember my wife’s name and was getting lost in my own home.

I was admitted to the hospital, put on an intensive care floor and proceeded to have days of seemingly around the clock medical tests to try to figure out what was causing my condition.

At one point my internist returned from a trip and took over my care. His name was Anthony Komaroff.

After eight days I was to be discharged from the hospital. Tests had revealed lots of medical abnormalities including encephalitis, white blood cells in my spinal fluid, immune irregularities, and severe cognitive impairments. No definitive diagnosis had been figured out although lots of diseases had been ruled out.

Doctor Komaroff’s verdict was that I had chronic fatigue syndrome but that the diagnosis could be made official until I’d had it for six months. Six months? I couldn’t imagine having the hell I was living with for that long. That was 24 years ago and the years of living with the illness are still clicking by.

It turned out that question I’d filled out years before was part of my being a healthy control in a chronic fatigue syndrome research study. How ironic. At the time I had had no idea that Dr. Komaroff was involved in chronic fatigue syndrome research, nor had I ever heard of the condition.

One thing is clear. I sure hadn’t taken the condition called chronic fatigue syndrome seriously until it pulled the rug out from under my world.

So here we are 24 years later and that ridiculous name is still with us.

Still the health department continues to inadequately address the illness and seemingly still clenches onto flawed negative bias about it. Still there is obscenely little money being spent conducting biologic research on the illness.

Still the public and the media also have blatant misperceptions about the illness.

Still lots of people are contracting chronic fatigue syndrome. And still more and more ‘old timers’ who got the illness in the 80s and 90s are passing away, in many cases for secondary complications.

To use the title of a movie, “Something’s Gotta Give.”

John Herd, 2012
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The Recession And Putting Governing Back In Washington

The Recession And Putting Governing Back In Washington

By John Herd
June 12, 2012

Inertia has a huge influence in economics just as it does upon mass..

When a loaded supertanker makes an emergency stop by throwing the engines from full ahead to full reverse it still takes about 2 miles and 14 minutes before the supertanker will be stopped.

When emergency brakes are applied on a 90 to 120 car freight train going 55 miles per hour it will travel a mile or more before stopping, around 18 football fields.

An 8-car passenger train going 80 miles per hour will take about a mile to stop.

A compact car going 55 miles an hour will take about 200 feet to stop in an emergency under perfect conditions.

My point is that our severe national recession has had an immense amount of inertia and mass. Under the best of circumstances the downward spiral of our recession could not be quickly stopped, let alone turned around. That is under the best of circumstances.

To singularly blame the current presidency for the continuation of the recession is pure naiveté at best. In reality such accusations are nothing more than party politics.

Given the global economy, the interconnected economics of countries and companies, the global recession also continued the downward spiral of our recession. It continues to slow our recovery.

Then we have the US Congress that has seemed unwilling if not incapable of working together to take all possible measures to turn the US recession around. Politics is all about Republicans versus Democrats these days, not necessarily what needs to be attended to.

More specifically a lot of the politics we have seen has been the Republicans being determined to undermine anything the president tries to put forth in the hope doing so will help them defeat the president in the upcoming election.

Republicans, Democrats and just about any media pundit will tell you that a worsening economy, the more people are hurting, the better the chances are of getting a Republican into the White House.

To be fair the Democrats are probably not thrilled about trying to work with uncompromising Republicans either. The party politics has built its own inertia, downward momentum of ineffective if not paralyzed governing effectiveness.

The party politics, all the time the politicians spend mouthing rhetoric in the media, and all the time they spend conducting fund-raising is not going to bring about the kind of economic recovery we want to see, we need to see.

Politics is being put ahead of the well-being of the nation and the people.

It is time all Americans, Republicans, Democrats and Independents alike say enough is enough. We want elected officials to govern.

Maybe we need to take to the streets with this message the same way disenchanted Americans did in the 1960s.

Maybe we need a million person march on Washington, maybe right into the halls of Congress.

Maybe that’s what it will take to put the level of responsible governing we need back into Congress — scaring them so badly that they realize they’d better get back to work in the fashion the public wants them to.

John Herd, 2012
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The IACFS/ME — From Strategic Jitterbugging To Jumping Into A Mosh Pit

The IACFS/ME — From Strategic Jitterbugging To Jumping Into A Mosh Pit

By John Herd
June 3, 2012

The International Association of CFS/ME (IACFS/ME) has struggled to economically survive almost since its inception.

Given their limited economic resources and a seemingly gradual diminishing attendance at their conferences [which translates to income] they’ve needed to do everything they could economically to just get by.

Over the years IACFS/ME Internal politics has triggered considerable turmoil within the organization, which has no doubt also reduced their effectiveness and weakened the organization.

When the organization was originally formed its membership was limited to medical professionals. The choice immediately engendered strong negative sentiments amongst many in the patient/advocacy community. Despite this, the organization’s early conferences in New York, Florida and California were well attended by patients. Getting local doctors to attend was another story; few ever did so the conferences were for all intensive purposes preaching to the choir.

To be fair to some of the past organizational presidents, vice presidents and executive board members, the organization’s weaknesses have not been entirely their fault; as with many organizations there were always more talkers than doers within the IACFS/ME. It’s tough for a few people to effectively run an organization, particularly when they have their own careers, families…

Despite this some of the executive board members hung in for a long time, possibly not because they particularly wanted to but because there were not others willing to pick up the baton. And there was certainly politics involved in this too.

I remember one case of the board being very dramatically divided on who should be the next president. Some members threatened to quit the organization if a proposed person became the next president. That person stepped aside and a new president was chosen the next day. In another case the presidency may have been more a case of anyone who would take on the role.

Aside from some random statements from its various presidents and a very limited number of other cases, the organization has refrained from taking a hand in proactive political advocacy. Given that a strong voiced stance on many matters from the organization would have been helpful, their frequent silence has also not engendered it well with the patient/advocacy sector.

Towards the goal of sustainability, the IACFS/ME has considered many strategies to make itself more applicable to a broader population, thereby potentially increasing its revenues and support. These efforts have not been a strategic waltz but more like an impetuous jitterbug.

One of these steps was to change its name from the American Association of CFS to the International Association of CFS. Then it decided to include fibromyalgia under its umbrella. Another, and I won’t get into the pros or cons of the choice, was to change its name from the IACFS to the IACFS/ME. Now we see it entering into a contractual agreement to produce a “Fatigue” journal.

This last act may lead to the IACFS/ME becoming more relevant to a broader population and medical sector, namely ranging from many illnesses to people who have not gotten a needed java fix. The choice to do this may also have something to do with the organization being lead by a PhD psychologist.

Whatever the reasoning and motivations for this action may have been one thing is clear, it will surely erode a lot of support from the CFS/ME community.

Given this new direction for the IACFS/ME I would propose that the organization drop the names CFS and ME from its name and become the “International Association of Fatigue.”

Oh, and java junkies of the world unite, we’ll have an organization looking out for us. Who knows, maybe even Starbucks might even throw the organization some money.

John Herd, 2012
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Karma Projection — Projecting Yourself Into The Cyclical Flow Of Friendliness

Karma Projection —
Projecting Yourself Into The Cyclical Flow Of Friendliness

By John Herd
January 28, 2012

Karma is a principle of cause and effect, what goes around comes around.

Though its roots come from ancient Indian philosophy similar philosophies can be found in many religions and cultures. Some of us gray-hairs embraced the concept of karma in the counter-culture 60s, not as a religious principle but as a life style philosophy of making the world a better place.

I do not intend to write of morality or religious principles so let’s put those aside and get down to what’s in it for you.

But first it must be noted that in a sense “what’s in it for you” can’t stand alone because it is inextricably interwoven with what’s in it for everyone around us, For now though let’s also put aside what’s in it for others.

I also do not intend to write a preachy discourse on morality, but rather just share some experiential observations of how the daily practice of karma projection can have profound very enjoyable positive impact on one’s life.

At first glance the subject of karma projection sounds fundamental if not boring, but lets be honest, how many really actively practice friendly karma projection daily and in turn fully experience how profoundly it can change one’s life?

Life’s challenging, it’s hectic, it’s demanding. The necessities of our lives can become akin to railroad tracks that hold us highly focused upon matters at hand. Often we may not even notice other people or things around us.

We pass by neighbors but may rarely talk to them or really know anything about them, let alone the vast majority of other strangers we see all day long. Life tends to become a maze of invisible fences that separate us from one another. It makes the world feel like a less friendly place.

Yet don’t we all want our worlds to feel like more friendly places? Would not the world be better off if everyone practiced trying to make it friendlier? Okay that may be a utopian concept but every little act adds to it, not necessarily in a small way. A mere pebble can start an avalanche. A small daily act can make our day and gradually our individual worlds feel far friendlier, more happy.

Okay, so even this sounds simplistically fundamental, but actively projecting friendly karma projection does very profoundly work. If a friendly gesture brings nothing more than a returned smile it still brightens one’s day. But it often brings far more. All it takes is a friendly comment, caring about people and listening.

I live by this principle and more importantly reap the benefits of it every day. I’ve long said if nice guys finish last then I’m determined to finish last. What’s come of this is that people’s friendliness every day continually surprises and delights me.

Almost wherever I go now, whether it be my favorite cafe, coffee shop, almost any of the area shops, or just out for a walk, I am greeted by people I consider good friends.

Living this way makes me cheerfully greet every new day and have go to bed each night with a smile on my face.

And it adds to my life in other ways too. Meeting people, talking to people, is like going to the library or museum; everyone has an interesting story or viewpoint. Others are constantly expanding my understanding of the world about me.

Although my life may not be all I’d like it to be, because of what I receive from a little friendly karma projection I can’t help but feel fulfilled.

I highly recommend your trying this cyclical flow of friendliness yourself if you’re not already; it’s really not anything particularly special but it is quite wonderful.

John Herd
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Romney — Can We Trust Having A Bully In The White House?

Romney — Can We Trust Having A Bully In The White House?

By John Herd
May 10, 2012

Reading about Romney’s boyhood tormenting of gay classmates in the following article (below) really pissed me off on many levels.

Romney’s defensive statements in the article seem to show that the man is a blatant liar; he claims not to remember the multiple noted incidents yet [amazingly] he does remember that he didn’t know the victims of his abuse seemed to be gay? Give me a break. His selective memory is not believable.

Romney went on to say, “I tell you I certainly don’t believe that I … thought the fella was homosexual. That was the furthest thing from our minds back in the 1960s. That too pins the BS meter at the top of the scale. There is a reason gays were so profoundly in the closet in the 60s; there was huge intolerance of homosexuality back then. That intolerance was deeply rooted in many people’s minds in those years.

I went to a high school in a very affluent town in Massachusetts during the 60s. It’s actually Romney’s home town. Most people in the town back then would have described me as a politically active outspoken radical. I repeatedly took part in demonstrations against the Vietnam war. I also formed a corporation with a friend to help people get to the large anti-Vietnam war demonstration in Washington DC. Such activities were a poke in the eye to students who expected to be drafted and were in favor of the war.

The town was also very politically divided. There was a liberal sector, in part because at the time the town had the highest per capita number of university and college professors of any town in the US. So too did the town have a very conservative sector. Unfortunately the town was home to the extremist politically far right John Birch Society. In those Vietnam war era years the tension between conservative and liberal people there was very palpable.

The day Martin Luther King was assassinated I participated in leading a school walkout in which we planned to all go to local churches to show support for the black community. We had one black student in our school who came from the one black family in our town. This action was more than just distasteful to racially intolerant prejudice people in our town.

Those of us who partook in the walkout were immediately expelled from the school. An open town meeting took place to decide if we should be allowed back to school or remain expelled. When the town selectmen order a policeman to remove a black man who was speaking at a microphone the meeting almost turned into a riot. Due to the political tension and potential bad PR for the town it was finally decided we would be allowed to come back to school.

Being known as a long haired marijuana using hippie also rubbed a lot of people the wrong way despite my working with my parents and other influential people in town to create a drug crisis center and hotline.

Our town was also very economically divided between the haves and the have nots. There were ever present tensions between many students due to the economic differences. I came from an affluent family who lived in one of the most prestigious neighborhoods in our town. In fact I actually attended a very exclusive summer arts program at Cranbrook, the same school where Romney tormented his fellow students. Coming from that kind of affluence also made me unpopular with some of those who were not lucky enough to be as well off.

All these things put me in the crosshairs of bullies like Romney.

In school and after school I was jumped and beaten up weekly by gangs of kids for my political views, for refusing to stop being friendly to the one black student in our school, for being a hippie and a “druggy,” and for my affluence.

I was beaten unconscious by a room full of kids and might not have survived had a very large friend not wandered into the room. I ended up in the emergency department of a local hospital. Another time I was beaten up on my way home from school. Despite bleeding considerably and unable to walk, no one passing by came to help. I had to crawl over a mile to my home. I had a student threaten to kill me as he chased me with a knife. We later got into a car chase in which he intentionally slammed his car into my stopped car. That kid ended up in jail.

The school officials [who clearly didn’t like me due to what I politically represented] would take no action against the students who committed these various assaults. The school claimed it couldn’t protect me while I was in school.

Those were in some ways tough years; they would have been far tougher had I not felt very secure in my political views and absolutely committed to them.

Although I lived those years with a constant level of fear, I can remember thinking that I was far better off than the students who were constantly bullied because the showed some effeminate traits or were considered less than macho. In the 60s kids like that were tormented continually and ruthlessly.

So for Romney to say, “That [homosexuality] was the furthest thing from our minds back in the 1960s” is an absolute crock. A bully is a bully and there are no worse bullies than homophobic bullies.

Romney’s actions reveal his inner character. Some aspects of a person’s character may transform over time but other aspects don’t. Being inclined to the kind of aggression involved in his noted kinds of bullying are not apt to change over time. How on earth could we trust that kind of bully to sit in the most powerful seat in the country?

Additionally, because a bully has a very broken sense of compassion, and because Romney has repeatedly shown that he lacks a real connection with and possibly compassion for the other 99% of us Americans, how can we possibly trust him to him to act compassionately about matters that may influence our well-being?

More than any other aspect of Romney’s history and political views, learning of this bully aspect of his personality convinces me that we can not allow him to become president.

John Herd

Romney apologizes for hurtful high school pranks

By Sarah Huisenga, Matthew Shelley
May 10, 2012 12:55 PM

(CBS News) OMAHA, Nebraska — Mitt Romney repeatedly apologized Thursday for pranks he played in high school that may have offended or hurt other students, even though he said he does not remember them. The apologies came in a Fox News radio interview that host Brian Kilmeade said was lined up because Romney wanted to discuss a Washington Post story about the incidents.

The Post story led with a vivid description of Romney repeatedly clipping the hair of a young man – presumed to be a homosexual – while other classmates pinned him to the floor, as the victim screamed for help and his eyes filled with tears. “I don’t remember that incident,” Romney told Kilmeade. “I tell you I certainly don’t believe that I … thought the fella was homosexual. That was the furthest thing from our minds back in the 1960s. So that was not the case. But as to pranks that were played back then, I don’t remember them all but again, high school days – if I did stupid things I’m afraid I gotta say sorry for it.”

The Post’s article details Romney’s teen-age years spent at Cranbrook, a prestigious prep school in Michigan, and focuses on the many pranks played by the future presidential contender. Several were harmless but others are remembered as cruel, insensitive or frightening to the victims.

The hair-cutting incident was confirmed by five of Romney’s classmates who described the event as “senseless, stupid, idiotic” and “vicious.” Candy Porter was the victim of a well-known prank in which Romney and his Cranbrook friends posed as cops, complete with fake siren and badges, and pretended to bust some friends and their dates. Porter told the Post she was “terrified.”

Romney was also remembered as having shouted “Atta girl!” when another closeted gay student tried to speak up in the classroom. Romney said he did not recall that incident. “You know there are a lot of times, my guess is at a boys’ school when one of the boys do something and people say ‘hey atta girl,’… I had no idea that he was gay,” Romney explained when asked about the comment. He again apologized for having offended anyone, saying no harm was intended.

When asked if the Post’s article was meant to show that he grew up in an intolerant environment, Romney was quick to say that he did not, and he pointed out that the sexual orientation of the people referenced in the story was not known when they were all in high school. “I had no idea that this person might have been gay,” Romney said, “and the article points out I participated in a lot of hijinks and pranks in high school and some may have gone too far and for that I apologize.”

Romney acknowledged that his propensity for pranks and causing a bit of trouble changed when he met  his future wife, Ann, while he was still in high school.

“There’s no question you know I became a very different person as I meet Ann,” he said. “So I went off and served as a missionary for my church. I mean there are elements in life that change you. I’m a very different person than I was in high school, of course. I’m glad that I learned as much as I did during those high school years.”

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Learning to See

By John Herd


Learning to see? That sounds strange; of course most of us, we lucky ones, see all the time. But how much do we really see? Our eyes are seeing, but what of our minds, and in turn our hearts?

The brain is an incredible filtering system. Our eyes, ears, noses, nerves, and taste buds continually send messages to our brains. If our minds were aware of all that sensory input we’d have so much information overload we couldn’t function. It would be akin to a massive Internet denial-of-service cyber attack in which we couldn’t focus upon matters at hand.

Despite the brain’s amazing filtering capabilities, our cognizant minds are still to varying degrees overloaded all the time. Daily aspects of our lives, tasks we need to attend to, worries, joys, intrusive sensory distractions… it all keeps our brains functioning at full throttle all the time we’re awake, and to a lesser degree even when we are asleep.

Something’s got to give. One of those things is how much is about us that we don’t notice.

Granted there are many things we probably don’t want to or need to notice. But so too do we miss out on seeing a lot of the wonderful things that are all about us, beauty, interesting things, funny things… all sorts of stuff that could bring additional pleasures to our worlds if noticed them. Becoming more aware of those pleasurable things can greatly influence our overall impressions of our worlds, our lives and our moods.

All of this sounds very rudimentary but that’s what is so deceptive about it. The more one exercises intentionally looking, taking the time and effort to look, the more one sees. It’s like working out on an exercise machine; the more you do it not only does it become easier but the motions involved and the level of exertion increasingly feels more natural. It’s basically practicing a new habit until it becomes instinctive.

Although I had been a professional photographer, years away from it and years of living under the continual requirements of my daily life had distracted me from being a habituated observer. At a point in which I was making some major changes in my life I became aware that something was missing. I knew I wanted to focus on exercising my creative abilities more but I wasn’t sure in what direction. Then one day I thought of taking photographs with the camera in my cell phone.

I liked the idea because of the limitations that cell phone cameras impose. Not having a telephoto lens translates to having to get close to subjects of interest, often very close if one wants a really good picture. I don’t know about all cell phone cameras but many have a little bit sketchy auto focus. Getting around this often also requires getting close so background details don’t fool the focus. But I’ve always liked the world of close, the world of the small. As a medical/scientific photographer much of what I had to photograph was from the world of the small, often the very very small. I had learned that the world of small had all sorts of wondrous things to see if one got close enough.

When on the prowl for things to photograph I have had to look closely at things, often down on my knees and inches away from my subjects. To capture the unusual I began to enjoy looking at things from perspectives that others might not look from. Even something as simple as looking up, sometimes getting down very low and looking up, yields images of things that others might not see. Capturing other kinds of subjects demands always being prepared, constantly scanning the surroundings and being ready to click in a split second. For in the realm of the world in motion getting the picture all too often demands reacting instantly or missing the picture.

What I found over time was that the level of observational vigilance did become habitual, but it also bestowed upon me a gift of something far more precious. Increasingly with each passing day and with each new beautiful and/or interesting thing I found to photograph, the more I realized there was beauty and fascinating things all about me.

It’s not that my immediate world is all that beautiful. It’s not. It’s a very urban setting with lots of apartment buildings, stores and two shopping malls. A casual observer passing through would probably not notice anything remarkably attractive or interesting at first glance.

That was part of the challenge I liked, to excavate the out of the seemingly mundane things of beauty and interest. Since starting the project about 8 months ago I’ve photographed several hundred images of things I’ve found. Each day I have gone out to photographed my world and then have shared 4 or 5 of my discoveries on-line.

By being more observant and finding new beauty to photograph every day, the project gave me a whole new appreciation for my world, and in turn an additional level of happiness. I felt happily more a part of my surroundings and visa versa. Each daily quest has provided me new moments of delight as I have come upon new subjects.

On one gray overcast morning I am sure many people looked outside and thought “what a gloomy day.” The air was heavy with moisture, there was no sunshine, no blue sky, and even the birds were silent. It looked and felt as if rain was going to break loose from the sky at any moment. I pulled on my raincoat, my rubber boots, donned my hat, and headed out.

As I was walking along I came upon a low shrub topped with several delicate spider webs. I stopped and looked closer. Suspended upon the webs were hundreds of tiny dewdrops. Because of the day’s soft gray light the spider webs were almost invisible. The dewdrops looked like dazzling crystal orbs magically suspended in air.

A little later while having a cappuccino at the local coffee shop a brief rain fell. By the time I was done and ready to head home the rain had passed, leaving behind puddles everywhere. As I walked across a parking lot I came upon a puddle reflecting the world above. I stopped, moved around it and squatted down looking at the surrealistic reflections of nearby trees. It was beautiful. While shooting several photographs, unknowingly a silent hybrid car approached from behind me. No doubt the passengers wondered about the person blocking their way as he remained squatted down in the middle of the parking lot. I was in bliss as they were probably feeling impatient. I moved as soon as I realized they were there.

My day had been the antithesis of gloomy; I had found splendor in my world. Had I gone to the MET I wouldn’t have seen anything more beautiful than my discoveries of the day. All this from just looking.

For me this is a hobby and a way of life. But it’s not anything particularly special. Anyone can do it and anyone can reap the same rewards of seeing the beauty about them. It just takes practice. That’s why I have written this piece. I encourage you all to try it.

© John Herd, ’12
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A Bumpy Road Or A Seismic Cataclysm That Has Tainted CFS Science And The CFS Community — We Need To Get To The Bottom Of It

A Bumpy Road Or A  Seismic Cataclysm That Has Tainted CFS Science And The CFS Community — We Need To Get To The Bottom Of It

By John Herd
January 28, 2012

In the perfect world science should be pure. The scientific process of validation should drive science forward, or if necessary get it back on track if it wanders astray.

That’s in the perfect world, how people would like it to be.

But we do not live in a utopian world; sometimes secondary factors impede or even corrupt science.

Do we want to see science tangled in the courts? Very often the answer is no for many reasons.

For one, the public gets a bad taste when science leaves the research and clinical labs and sinks into the courts. Additionally, the judicial process may cast a legal judgment as opposed to a scientific judgment.

Sometimes judicial ‘judgement’ does not even mean justice. Sometimes it merely reflects who has the most money for litigation and/or the best lawyers. It’s not necessarily the best scientific course of action or even the fairest way to go.

In the case of medical research, there are other well established avenues for resolving many kinds of problems related to medical research and those conducting it.

Institutional review boards (IRBs) are responsible and required to monitor medical research involving humans. IRBs were created to monitor medical research and address research abuses and ethical problems if they should arise. In the case of medical research at or affiliated to an academic institution, assuring research integrity and that of parties conducting research is a required function of the IRBs.

The Whittemore Peterson Institute (WPI) had to have an IRB before conducting its research and before receiving government grants. The management of IRBs at the University of Nevada [where WPI resides] is handled by the Office of Human Research Protection. Unless WPI used an independent IRB I presume the university’s IRB would be well equipped to investigate possible irregularities that we’ve seen discussed on the Internet.

Within the Department of Health and Human Services (DHHS) there is the Office for Research Integrity which assists institutions investigate matters pertaining to medical research. They can launch their own investigations and also have many capabilities for assisting institutional IRBs in their investigations.

Might the DHHS Division of Grants Compliance and Oversight, the Office of Policy for Extramural Research Administration and the Office of Extramural Research also have authority and to investigate matters pertaining to the NIH grant that was awarded to WPI?

These are bodies far better equipped than the judicial system to investigate irregularities pertaining to medical research and the institutions conducting it. They have the expertise to do so, and unlike the judicial system they do so from and independent and therefore less biased position.

So what of all the problems that have percolated up within WPI?

When a pattern of problem after problem arise in an organization, and they’re always being blamed on ‘the other people,’ one has to pause and think maybe the problems are rooted not in the others but in the organization itself.

The Whittemore Peterson Institute (WPI) has had a very significant history of “the doctors who didn’t,” that didn’t work out.

Dr. Daniel Peterson, one of the institute’s founders and its medical director, left WPI under contentious circumstances.

Dr. Jamie Deckoff-Jones, the director of clinical services, separated from WPI again under what again appeared to have been troublesome circumstances.

And then Dr. Judy Mikovits, the research director separated from WPI. To call that separation “contentious circumstances” would be a gross understatement; WPI lashed out at her with a flurry of criminal and civil legal actions.

Were these legal actions merely to get back data that WPI claims ownership of, or was their strategy to silence Dr. Mikovits from disclosing serious management, research and other more serious problems within the institute?

If WPI were [as they claim] first and foremost interested in the patients, would they not want to share research data reportedly in some of the infamous research notebooks mentioned in the legal actions? By sharing the information could not other investigators possibly also help move the science ahead? Sorry but WPI’s stated reasons for the scope of their legal actions does not in my opinion cut it.

And why is WPI going after Dr. Mikovits for damages in their civil lawsuit? Is this a legal shell game strategy to distract the public from thinking, realizing, that the damages hinted about in the lawsuits may be a long succession of WPI self-inflicted damages not by Dr. Mikovits but by themselves?

Might WPI’s seemingly rabid determination to get the noted research notebooks back without sharing what was in them only or merely a case of their wanting back the data they viewed as theirs alone, or might they have also been concerned what was in them that may have reveled deeper problems within the organization?

We’ve seen WPI mount a vicious legal fight to get not just all of Dr. Mikovits’ business email but also her personal email. WPI has been ardent about keeping inside matters inside, in essence gagging Dr. Mikovits from speaking of what went on within WPI.

When one sees such an over the top frenzied activity to squelch the release of any and all internal data, it quite logically makes one think, what are they trying to hide? Was there something far more important than merely research data in ‘the notebooks,’ possibly information that would have been self-incriminating for WPI?

There have been many innuendos circulated on the Internet for a long time of WPI’s questionable business and financial dealings, including talk of misappropriation of funds, possibly even government grant funds. While such talk isn’t confirmed fact, the line “where there’s smoke there’s fire” comes to mind.

But there’s not just a fire; there’s now a fire storm. The Whittemore’s Wingfield company business partners have now filed lawsuit against them, claiming that the Whittemores “embezzled [many] millions of dollars.” They claim that the financial records which Whittemore supposedly managed were laced with problems. The partners claim Whittemore embezzled a huge amount of funds for not just a wide range of personal uses but also “to benefit his company the Whittemore Peterson Institute.”(1)

When we hear such charges of “fraud, deception and malfeasance”(1) being conducted by the Whittemores, even in association with Whittemore Peterson Institute, how likely is it that that river flows in two directions, that there hasn’t been such wrong doing inside the institute also? Aren’t the phrase ‘business records’ and ‘notebooks’ pretty interchangeable?

And that fire storm keeps growing. The judge hearing the WPI/Mikovits court case supposedly has had a long close relationship with Harvey Whittemore; just do a Google search of the judge’s name with Whittemore’s and see what comes up. It’s not surprising that in a state where the Whittemores have had such strong political and financial clout that the tentacles of corruption could reach into the judicial system as well. Power corrupts. Should not a judge in such a position have removed himself from such a case? Clearly these cases should be put on hold until proper independent authorities can conduct thorough investigations.

In the world of public relations appearance is everything. It’s very convenient to accuse/blame Dr. Mikovits for “damages” WPI has supposedly experienced. Many if not most of those damages may not have had anything to do with Dr. Mikovits.

For years now we well informed patient advocates have seen public statements coming from WPI and statements made in television interviews which have in our eyes seemed to be not just questionable political spin but flagrant contradictions to matters as we’ve seen them.

WPI’s public relations efforts have in our our opinion been a repetition of contradictory damage control efforts coming from an organization that has made one misstep after another.

Given WPI’s very problematic history, is this the type of organization we trust to conducting medical research with the limited funds we have? Is this the type of organization we trust to to represent us on the medical and research stage? And given the ever increasing history of problems for WPI, would you really want to go to the institute for clinical care?

WPI minimized the ugly chapter of differences with Dr. Mikovits and the legal actions as “a bump in the road.” If these matters have been merely a bump in the road, the institute better get a Humvee to navigate whatever lays ahead. For I can’t imagine any doctors, patients, institutions, or philanthropist wanting future involvement with WPI given their track record.

I for one would like to see WPI open all their files to independent investigation of how they have functioned so we may eventually know the truth rather than it remaining behind a he said she said status, or continuing to be totally hidden behind PR spin.

It’s not just about WPI’s activities pertaining to Dr. Mikovits; it’s about the whole succession of events that have eroded the public’s good will, support and trust.

(1) Lawsuit claims Harvey Whittemore embezzled millions of dollars from former business partners, Reno Gazette-Journal, Jan. 27, 2012

John Herd

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Personal Opinion about the Whittemore Peterson Institute

Personal Opinion about the Whittemore Peterson Institute

By John Herd
December 3, 2011

Early on I had felt very enthusiastic about the Whittemore Peterson Institute (WPI).

Having had quite a bit of experience in the medical research realm, in CFS advocacy, etcetera, I thought I could possibly help WPI as an independent advocate. I stuck my neck pretty far out publicly supporting and promoting them because I thought they had a lot of potential. When I saw them making some [in my opinion] poor choices I offered them my assistance. They did not take me up on it which was okay. Later on I became very thankful they hadn’t.

Sadly, I watched them continuing to make one strategic and/or PR blunder after another. Finally I decided that I could not support them any longer because I felt their actions were increasingly hurting the CFS community more and more.

As a past advocate who singularly cares about the patient sector I felt obligated to say something.

It’s important to note I never took sides on the conflict between Judy Mikovits and WPI, but rather only commented about how WPI actions were (a) hurting the CFS community, and (b) that WPI had let down the patients who had invested their hope, faith and dollars in WPI. I felt both to be unforgivable.

As I’ve stated earlier, it then got personal when I got that unsolicited email from WPI’s law firm.

There seems to be in my opinion a perpetual pattern of WPI ignoring other’s sound advice, instead taking actions that further damage their organization, the field of CFS research and the overall CFS community.

WPI now seems tragically to represent little more than a blight of potential and opportunity lost. I do not see how they can survive. Given what I believe to be their destructive and self-destructive activities, the future likelihood of WPI remain open seems unlikely, unless the Whittemore family keeps infusing it with funds. Given WPI’s track record I can’t imagine any sound doctor wanting to work with them, any institution feeling comfortable giving them a grant, or any informed person wanting to give them a donation.

To all in the CFS community, I now realize the faith I placed in the WPI administration was a mistake, as was all the public support I gave them. For that I apologize to the CFS community.

John Herd

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Missed Opportunity :-)

Missed Opportunity 🙂

By John Herd
December 2, 1011

Disclaimer: This is actually a satirical picture of me.

The Whittemore Peterson Institute (WPI) and their law firms blew it; instead of a law firm contacting me they should have sent a hit man because WPI used to be named in my will as a significant beneficiary.

If I had been knocked off not only would I have been shut up, but WPI could have gotten a significant infusion of funds. No longer though, I have changed my will. 🙂

Long ago I contacted the WPI office to get needed information for naming them in my will. I informed the WPI official about what I was doing, an action that could have represented a very sizable amount of money. To my surprise I never received any kind of official thank you. Talk about poor PR and something slipping between the cracks.

John Herd

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The Business of Medical Research

The Business of Medical Research

By John Herd
November 30, 2011

Medical research is more far than science for the sake of science, and far more than science for the sake of helping the ill. It is big business, very very big business.

Researchers and the institutions they work for, whether that be universities, hospitals, private or non-profit organizations all use employee/employer contractual agreements.

Such contracts cover ownership of proprietary information, use of such information, possible income sharing from derived information, confidentiality, etcetera.

Use of such contractual agreements are standard operating procedure because medical research is such big business and potentially big money.

Fortunes are made and lost on the stage of Medical research, as are the reputations and professional standings of both researchers and institutions.

As a side note, these factors frequently also induce a great deal of competition and politics, thereby making such contractual agreements all the more important.

When a researcher accepts employment at institution they’re not taking a minimum wage job flipping hamburgers on a grill; they’re entering into a well salaried and potentially lucrative position.

As such any researcher with the slightest bit of savvy makes sure they have a thorough understanding of their contractual standing with the institution. Use of legal counsel is often involved in this because so much is potentially on the line.

The institutions whether they be non-profits, private organizations, hospitals, universities… are all businesses, and as such economic factors are always paid attention to. This is essential for their sustained survival let alone growth. That’s the only way they can carry on their work.

Throughout my career of working with medical researchers I was called in to document new discoveries, new techniques, etcetera. Doing so was very often done long before such information was presented to conferences or medical journals.

Much of the work I was hired for was done to help document and establish evidence of ownership of the proprietary information. In turn the investigators and institutions often went to the patent office long before they present at the podium or in a journal.

There’s nothing wrong with any of this; it’s just how the industry works. All these factors are part of what drives, what motivates the the forward progression of science.

On many levels conducting medical research is an investment for both the institution and the researcher. If important advancements are made all parties including the public gain from it.

It would be incredible, astonishing, if there were not such contractual agreements used at the Whittemore Peterson Institute (WPI), and understood by all parties involved.

We outside observers don’t know and may never know what those contractual agreements stipulated. Speculation does not clarify anything.

If though contractual agreements were broken by any of the parties involved there’s cause and effect, ramifications.

What’s sad is that while all the legal/judicial fighting is going on we all lose out. Dr. Mikovits loses out, WPI loses out, and we the public who may benefit from scientific advancements lose out.

Because of this, and because of all legal/judicial actions being taken by WPI, I have a hard time believing it when WPI now states, “…Our commitment is to the patients first.” It’s about business.

If it were truly about “patients first” the information in those research notebooks and all discoveries made at WPI would be openly shared with other researchers and organizations conducting CFS research.

Of course that would be in a utopian world, but please don’t expect me to believe shallow public relations spin. It’s about business, even if all parties involved also care deeply about patients also.

John Herd

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