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

Posted in Advocacy in general

Missed Opportunity :-)

Missed Opportunity ūüôā

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. ūüôā

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

Posted in Advocacy in general

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

Posted in Uncategorized

“A Time for Outrage!”

“A Time for Outrage!”

By John Herd
October 9, 2011

The word “outrage” has taken on a whole new meaning for me after viewing an interview of author, Stephane Hessel.

Mr. Hessel speaks of outrage in its most positive sense, portraying it to be not necessarily anger, but the driving force behind people trying to make good things happen.

I highly recommend watching the C-SPAN Book TV interview.

In my opinion the interview is an must see video, not because of it’s being a very interesting and inspiring video, which it is, but because it is such a heart warming portrayal of an absolutely charming man.

At 94 years of age Mr. Hessel continues to have a magnificent almost blinding sparkle of charming vibrancy that will warm the heart.

I came away from watching the interview with a rekindled faith in mankind that I’d not so strongly felt since marching at the lead of an anti Vietnam war demonstrations in the late sixties.

Hessel’s words were partially responsible for my feeling that way, but it was also because his book, “A Time for Outrage!” published in various translations has sold many millions of copies worldwide.

The book has for some become an almost iconic symbol for people unwilling to remain silent and inactive about status quo wrongs in the world, about governments’ actions or inactions, about corrupted or broken economic and commercial markets, etc.

Mr Hessel, has lead an amazingly impressive life. He was a French Resistance fighter during World War Two. He worked with de Gaulle, was captured by the Gestapo and waterboarded, and was sent to a concentration camp from which he escaped. After the war Mr Hessel became a diplomat. As a United Nations speechwriter he worked in collaboration with Eleanor Roosevelt on drafting the “United Nations Universal Declaration of Human Rights.”

He is a man for the people.

Mr Hessel’s message is be active, be involved, for constructive active outrage can bring positive change.

That sounds like a dry message, maybe even boring for those who are not politically oriented, but he conveys it in such a delightful endearing way one comes away adoring the man.

Having been an advocate for a particular community for over two decades I wish I could have conveyed the get involved message as eloquently and inspiringly as Mr. Hessel does in the interview.

As a disclaimer, I’ve not yet read his book, but hope to buy it next week because I can’t wait to read it.

But as I stated, it was the man and his heart warming, sometimes playful spirit that incited me to write this article.


John Herd

Posted in Uncategorized

There Are Limits To Forgiving

There Are Limits To Forgiving

By John Herd
October 3, 2011

Today it became public that Annette Whittemore, the head of the Whittemore-Peterson Institute (WPI), has fired Dr. Mikovits.

I feel as if Annette’s latests action has zapped me with a taser.

It’s strange in a sense to be feeling such a reaction because many of us have suspected for some time that the WPI was a sinking ship with immense internal problems.

Annette has over time made an ongoing succession of what have appeared to be very unwise moves.

Many of Annette’s decisions have seemed counter to the best interests of WPI, of science and the best interests of the patients. There has seemed to be plenty of questionable history that’s transpired behind the doors of WPI, none of which I’ll talk about at in this piece. I’ll leave that up to those more directly involved.

So why am I now feeling the level of surprise at what is actually but one more in the succession?

Am I feeling so stunned now because Judy Mikovits’ firing has all the appearance of being the likely final chapter of the WPI story? I don’t think it’s that, although I can’t imagine this not being the very justifiable end of WPI.

Is it the blatancy of firing Judy, because Judy was their scientific director, their lead and primary researcher, and the only ace in their hand? I don’t think so.

My hunch is my being so stunned is not from the singular action of firing Judy, but rather in part that it marks the summit of the long succession of unwise actions that undermined the initial potential of WPI, but more importantly the summit of betrayal of the trust, hope and faith that we patients invested in WPI.

Given CFS history and all we’ve been through, trust, hope and faith are very precious scarce commodities for the CFS patients.

Many of us have given WPI money, but it’s only money.

Many of us have in our own ways have given WPI a lot of our time and energy in the ways we have supported WPI. But it’s only time and energy; we’ll have more time and energy.

But trust, hope and faith are not necessarily always able to be endlessly replenished.

Given what patients have been through and what their days ahead may hold, the amount of trust, hope and faith they have left may be quite finite. The erosion may for some be permanent.

We patients only have partial symptom relief from the medical treatments available. Trust hope and faith are far more precious than any of those treatments because they keep us alive, they keep us going.

Annette’s betrayal of our trust, hope and faith with her actions has betrayed the most precious thing we have.

I’m a very forgiving person, possibly to a fault, but I can not forgive for WPI has inflicted upon the patients and the science we rely upon.

John Herd

Posted in Uncategorized
Stepping Out

By John Herd
July 10, 2011

Hearing thousands of voices, each whispering silent sufferings from behind closed door

Voices of desperations, losses and anguish, devastations to the core

Then further demoralized by promulgated pseudo scientific folk lore

I shared resources, gave patients support, disseminating related news

Promoted increased research, one step forward, then two steps we lose

Tied to impose accountability upon a governmental ruse

Done this, done that, everything I could

On the phone, in letters, and before microphones I stood

Sat on committees that would make headway, knock on wood

Yet here we are today and so little has changed

By the government and some organization patients have been shortchanged

If anything the political landscape seems even more deranged

Some claiming to be advocates building Internet domains

Spinning wheels endlessly, developing ineffective campaigns

But dare one speak honestly, and one receives heated disdains

Others presenting revisionist histories and spinning the truth

The Internet’s full of people acting so uncouth

Forcing anyone seeking unbiased accuracy to become a sleuth

Endless dialogs on the Internet, repeated again and again

Escalating contentious skirmishes, a despicable playpen

Oh for the days when we had only the pen

Meanwhile those trying to do good advocacy do not seem to last

As they grow weary of contending with a gladiatorial cast

The hostilities cause the sincere to burn out so fast

I’ve given more than two decades, it’s time I bow out

For despite still caring deeply… Will it ever change? I doubt.

So this John Herd, aside from maybe an occasional blog post, for now over and out.

¬© John Herd, ’11

May be reposted with prior permission

Feel free to respond to me via:

Posted in Advocacy in general

The Heat Of Medical Politics

The Heat Of Medical Politics

By John Herd

Author’s note:¬†Having worked in an allied medical research career working with researchers, clinicians and hospital administrators I’ve seen a great deal of medical politics at play. It is from those¬†observations garnered by those¬†experience that I write the following. It is from the perspective of being a CFS patient that I wish to see any and all sound research move forward, possibly to lead to better medical treatments. And it is from just being a caring human being that I am saddened by amount of malicious medical politics we see in the CFS medical arena.

The fires [heat] of medical research politics are often stoked by competition for potential economic revenues, thirst for professional recognition, secondary politics and economics, print space in medical journals, and occasionally a heavy dose of unbridled professional ego.

Competition can be constructive and necessary, as it can be an important driving force in moving science forward.

When the medical competition becomes corrupted with tainted information and bias, some embrace the notion that an Alan Greenspan hands off approach of institutional self-regulation will bring about the truth in the end, that science will prove science.

That’s not always the case.

Sometimes corrupted competition hinders the advancement of research and in turn scientific understanding.

Another ugly side of such competition is that it sometimes metastasizes into not just attacks upon the central science at hand, but very personalized attacks upon the professional caliber and even personal character of people involved.

When such tactics are unjustly employed it can tragically be a career ender and scientific advancement stopper.

Economic and organizational resources to push the science forward, to validating the science, will sometimes also vindicate the scientist who has been wrongly attacked.

In the meantime though, it takes immensely strong inner character to endure the heat of such public character assassination.

During such times when the attacks feel all too personal, it’s important to separate the ugly stuff happening in the professional arena from¬†the scientist’s private personal world. It’s important to to realize the attacks may be more a reflection upon whence they come.

In terms of what we are seeing in the contentious politics about XMRV and the Whittemore Peterson Institute’s research, and however the¬†science and politics resolves itself, I believe we [the patient sector] need to get one resounding message out.

Judy Mikovits and Annette Whittemore care deeply about patients and patients’ well-being. They are caring and well intentioned people who¬†deserves our support and recognition for their attempts to help us.

That may not be enough to offset the emotional anguish induced by all the heat in scientific arena, but I hope it helps them get through it, to get beyond it.

© John Herd, 2011

May be reposted with prior permission
Feel free to respond to me via:
Posted in Medical Advocacy, Medical research, Political Advocacy