“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.
http://www.c-spanvideo.org/program/Outrage

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
johnherd@johnherd.com

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
johnherd@johnherd.com

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: johnherd@johnherd.com

Posted in Advocacy in general

The Heat Of Medical Politics

The Heat Of Medical Politics


By John Herd
6/23/2011

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

Stepping Into Another’s Shoes

Stepping Into Another’s Shoes

By John Herd
5/25/2011


Imagine for a moment you are not a CFS patient, and you’re not tuned in to Co-Cure, the various CFS related discussion forums or Facebook pages. Imagine yourself maybe being a doctor or or someone else just trying to keep up with a very heavy seemingly never ending work load.

Were you such a person you may likely be aware of most of the big ticket issues pertaining to CFS, but you may not be aware of many of the subtleties and their innuendos. While you’ve probably observed some of the politics surrounding CFS, you’re probably unaware of many of its nuances and historic details.

What you do know is that the politics have gotten so ugly and competitive that you want nothing to do with it. In a perfect world science should be free of politics, but we don’t live in a perfect world. Instead you have chosen a path of trying to avoid the politics and to show that you won’t be party to the nasty competitiveness. This may sound somewhat naive but it is admirable.

You are just trying to doing the best you can at your CFS related work.

One commitment you feel strongly about, as most CFS patients would agree, is that we need many kinds of high caliber research conducted wherever it may come from. We need to unravel the mysteries of CFS biology and bring about the development of more effective treatments.

Advocacy and medical research should be and often are closely tied to one another. Effective advocacy can assist the medical researcher in many ways.

Given that politics is never apt to be eliminated from medical research, effective advocates can in many ways run interference for researchers and cultivate fertile ground from which more research may grow. The skilled advocate is aware of many of the political mine fields that the researcher may not be aware of. Advocacy is political and the skilled advocate understands political tactical strategy. So too is the well informed advocate likely to be far more aware of the detailed broad view of the political landscape than the medical researcher may be.

Given all these factors medical research and advocacy should have a collaborative relationship with one another. They share the same goals. By collaborating they may reach those goals sooner, or at least reduce some of the impediments.

Recently Annette Whittemore released a public statement about the Chase Community Giving program and casting extra votes for the CFIDS Association of America (CAA). She then followed that with another public statement in an effort to explain her reasoning.

Although her statements may have been made with the best of intentions, similar to the example presented in the above paragraphs, her words instead set off a fire storm in the middle of two mine fields simultaneously.

For well over a decade the CAA has had an all too cozy collaborative relationship with the health department. Instead of being strong advocates for the needs of CFS patients the CAA has mostly taken actions to promote and bolster their own organizational economic interests. They have repeatedly betrayed the patient sector as they have acted as a puppet for the health department, most notably for the CDC. They were given many chances to correct their misguided wanderings yet they never did so. In turn the vast majority of the CFS patient and medical sectors came to the conclusion that they could no longer support the CAA. People do not forget betrayal, nor should they.

From time to time the CAA, PANDORA and a few other groups have deceptively called for unity. Sincere unity formed around common goals and actions is something we’d all wish to see. That’s not what their calls for unity are about though. Those organizations insist on being the directors on the stage of CFS advocacy and are adamant about doing things their way. While they speak of unity they will have little or nothing to do with others who have differing views. Collaboration to them means do it our way or don’t be included. Above all else they wish to quell being held accountable for their actions and behavior so they call for unity. It is a sham. People won’t forget this either.

Contracting CFS can imposes immense insults upon virtually every aspect of one’s life, one’s health, education, career, economics, social life, even family life. In most of these cases the calamity is brought about by the illness, leaving previously healthy lives in various stages of ruin. When friends, family, colleagues, doctors, health departments, and some in the media add insult to injury the induced emotional pain can run deep. But aside from friends and family the others are outsiders.

When the betrayal comes from a CFS organization, an organization that had once been thought of as the collective “our organization” the insult seems to plunge much deeper. It is being imposed by ‘one of our own,” an ultimate betrayal. People do not forget betrayal, nor should they.

These are the flames of sentiments that got fanned by Annette Whittemore’s recent statements about casting Chase votes for the CAA and by her then speaking of unity. I believe her words were meant with the best of intentions. I’m sure she did not mean to sound as if she was invalidating the strong and justified sentiments patients have nor the less than stellar history of some of “our organizations.”

Annette knows all too well many of the kinds of insults the illness imposes, she has watched her daughter having to live with them. Annette also knows how ugly CFS politics and competition can get; she’s seen some of the ugliest aimed directly at her, at Judy Mikovits and at the institute.

Annette wants the best for her daughter. She wants her daughter to have a healthy vibrant life again. Those are the sentiments that drive the Whittemores to help their daughter and all patients.

Let us not declare Annette guilty for the prior acts of other organizations. Let’s give her and the institute time to proceed in their efforts. No person and no organization is perfect but WPI may still be the best game in town.


© John Herd, ’11
May be reposted with prior permission
Feel free to respond to me via:

Posted in Advocacy in general, Medical Advocacy, Political Advocacy

Help Where You Need It

Help Where You Need It

Has it been a grueling day, but you have to keep going?

Or did the day start before you were ready for it?

Millions experience Dragging Butt Syndrome (DBS), some continually.

DBS is ergonomically challenging and can be orthopedically debilitating.

After years of emperic research, scientist at the Herdistic Institute have invented a solution.

No longer must you suffer from friction burns on your butt or leave scuff marks across the carpet.

Simply slip on a pair of our patented Asscasters® shorts and you will glide about with ease.


The Herdistic Institute would be delighted to FedEx you a pair of Asscasters® shorts for $29.95 plus shipping and handling.

As a valued customer, we would also like to offer you our rechargeable JATO (jet-fuel assisted take off) Asscasters® shorts accessory lifting system for a mere additional charge of $99.95 plus shipping and handling.

The Asscasters® JATO canisters will help you get off the floor on those days when gravity feels too strong.

And if you order today we will give you a second set of Asscasters® JATO canisters absolutely free.

CAUTION: Asscasters® shorts are not recommended for use on steep inclines.


Sincerely,

The Sales Division
Herdistic Institute


© John Herd, ’11

May be reposted with prior permission
Feel free to respond to me via:
Johnherd@johnherd.com

Posted in Uncategorized

Herdism For The Day

Herdism For The Day


When Stephen Hawking was asked about the joys of scientific discovery he said,

“I wouldn’t compare it to sex, but it lasts longer.”

Apparently he wasn’t talking about when you are screwed by poorly conducted science.



ADDENDUM

If needed CFS science were equated with sex,
I’d have never imagined the foreplay could last so long.


© John Herd, ’11

May be reposted with prior permission
Feel free to respond to me via:
Johnherd@johnherd.com

Posted in Advocacy in general, Medical Advocacy, Medical research, Political Advocacy

NIH’s CFS Theme Song

NIH’s CFS Theme Song

To the tune of Simon & Garfunkel’s
Fifty Ninth Street Bridge song (Feeling Groovy)
———————Slow down, a crawl’s too fast
We gotta make this saga last

Slow down, a crawl’s too fast
For now let’s just repeat the past

Just passing the buck, and feelin’ groovy

Hello patients, what cha know?
That’s too much, we must move slow

Hello patients, what cha know?
That’s anecdotal, leave it to a pro

Got no deeds to do, no promises to keep
But don’t think we are asleep

There’s just no money, but we’re feeling groovy

Note: This in not to say that there are not individuals within DHHS that have strived to help us. They deserve credit where credit is due.

© John Herd, ’11
May be reposted with prior permission
Feel free to respond to me via:
johnherd@johnherd.com

Posted in Advocacy in general, Political Advocacy

The Elimination of Bin Laden — Cause For Celebration?

The following is not about CFS, but I felt moved to speak about it.

The Elimination of Bin Laden — Cause For Celebration?

By John Herd
May 2, 2011

Last night I learned that a US special forces team had killed Osama Bin Laden. When I turned on the television to get more details the news stations were showing impromptu celebrations at ground zero, in front of the White House and elsewhere. I immediately had very mixed feelings about about the celebratory events I was seeing.

I’d not hesitate to say that Bin Laden needed to be taken out, but it seems to me inappropriate to celebrate. The taking of an individual’s life, any individual’s life, is a solemn matter even if their elimination is very justified.

My immediate concern as I watched the television was that the killing of Bin Laden could potentially could trigger al-Qaeda or other radical groups to launch reprisal attacks upon the public. If the figurehead of any movement were killed the followers of the movement would be apt to rise up in some fashion. Why should we think it’s any different with al-Qaeda and other radical Muslim groups?


If such groups were to launch some kind of major retaliatory terrorist attacks all those celebrations in the streets would look very premature to say the least.

If the world could somehow accomplish establishment of a peace treaty agreement with global terrorists then I’d dance in the streets.


But as long as terrorism is such a global threat to so many people, I don’t feel celebrations are called for. The celebrations themselves could quite possibly contribute to provoking yet more terrorism.


© John Herd, ’11

May be reposted with prior permission
Feel free to respond to me via:
Johnherd@johnherd.com

Posted in Uncategorized

The Japanese Culture — Simply Amazing

The Japanese Culture — Simply Amazing


By John Herd
March 15, 2011 

I went to the Itsuki Restaurant for lunch today. It is a neighborhood Japanese restaurant. But I really went to tell the people there that I hoped their families in Japan were all okay. Yumie, a charming you waitress there, greeted me with the same enchanting smile and “how are you” that she always does.

I told here that I was very concerned for any family she and her husband may have in Japan and said I hoped they were okay. In a seemingly understated and yet positive way, still with the smile on her face, Yumie said she and her husband do have family there, that they all have lost their homes, and have now food, water or utilities. Then she added that they will be okay though. I told her that they will be in my thoughts and hopes.

When my food was ready I brought it home and began eating it. As I sat there I couldn’t help thinking that despite my having to be very careful with my limited fixed income, I had so much more than all the untold thousands of Japanese going through the horrors of the disaster. I could not keep eating. I had to do something.

I headed to an ATM machine and withdrew $100 from my already pretty depleted funds for this month. Then I headed back to the Itsuki Restaurant. I told Yumie that I wanted to help someone in Japan, someone, anyone in her family. I also explained that if I just made a contribution to an aid charity only a portion of the funds would ever get to actually helping someone; the rest would go to the charity’s administrative expenses.

When I put the $100 in her hand she acted as if she didn’t quite know if she should take it. Then she said she needed to talk to her husband about it, a gentleman who is a chef at the restaurant. They spoken for a minute and then she came back to me.

Yumie said to me that their families would be okay, but they knew someone in japan that was a lot worse off and they’d like to give that person the money. Keep in mind that Yumie’s relatives had lost their homes and had neither food or water.

That degree of generosity on their part, and the amazing example of the concern for societal collective well being apparently over individual priority more than moved me. Every time I thought of it throughout the rest of the day moved me almost to tears. It was a morality lesson I will forever carry with me. It’s a lesson we can all learn from.

 

© John Herd, ’11
May be reposted with prior permission
Feel free to respond to me via:
Johnherd@johnherd.com
Posted in Uncategorized