There are some really evil people planning nefarious deeds in your name in our nation's capitol. The infamous CFSCC met this week in Washington. On the first day they had two medical doctors who spoke on the subject of medical school education. One doctor had seen a total of ONE ME/CFS in his LIFE in a clinical setting. The other has seen only a handful, but he was great -- his name was Michael Crouch. We are planning to ask him to post his speech on this website.

Dr. Crouch described the severity of the illness quite well by saying "many of these patients can not lift even a toothbrush to their mouths for ten days a time." He also said, "After reading Osler's Web, I can say, that I have never in my entire life, heard of any group ever being treated so badly by the people who were supposed to help, as people with CFS." Just think -- a doctor who only has a handful of patients with CFS, cares enough to read a 714 page book!

The rest of the CFSCC meeting was very disappointing. A lady from the government reported that almost 80% of medical schools had little or no curriculum dedicated to ME/CFS. The CFSCC brain trust patted each other on the back for another job well done, and then adjourned for the day.

Before we left, the attack-dog-in-chief for the CFSCC panel, Ms. Lillian Abbey, wanted to know which doctors where going to present for RESCIND, Inc. the next day. I told her the truth, that I had received input from about a dozen doctors and medical professionals, and more than two dozen more people who offered loads of information regarding important physician education points. And I was still working on the final speech. She then showed me a top secret list of the NEW voices scheduled to speak the next day. Of the ten, 5 had specifically asked myself or Jill McLaughlin to read their testimony or present for them.

I could see trouble coming.

Ms. Abbey, the keeper of the list, who was trying desperately to quell the voice of the REAL people had a look of panic on her face. Dr. Satcher was possibly thinking of actually following the law of the land, by attending the very meeting that he is legally bound to chair. Their was only ONE new committee chartered for ANY the diseases in the country, two years ago, when the CFSCC was put into existence. Then-Ass't. Sec'y for Health Dr. Phil Lee, saw to it that he or his successor would have to chair the meetings.

So, I went home and practiced 5 different speeches, plus put together the top dozen proposals for RESCIND, Inc.'s presentation. I was up until 4:45 AM working on this. When i arrived the next morning, Kim Kenney of the CFIDS Association was standing at the podium saying that the CFIDS Association and herself "were taking the lead on the name change." This is the same organization that tried to push their own moniker on sick people for the past 12 years, and fought tooth and nail to STOP any name change for a decade! Well, they suddenly have a change of heart.

Kenney claimed to have contacted more than `100 people who had an interest in or had shown leadership in changing the name. Of course, she did not contact anyone from RESCIND, MPWCs, or Roger Burns. The ONLY three groups that have taken a lead on a name change for 10 years for me, 7 years for MPWC's and at least 5 for Roger Burns. What a country!!!!!! These CFIDS Association people fought tooth and Nail AGAINST a name change for the past decade. Now they suddenly pull a 180 degree turn. Beware! We really urge you to NOT work with these people until they include ALL interested parties, especially the people who have endured countless arrows in the back to bring the truth to light.

Anyhow, the Pit Bull, Ms. Lillian Abbey came up and told me that "Dr.Satcher [the U.S. Surgeon-General] had decided this morning that NO presentations could be read by anyone but the author of the presentations". The EXACT opposite of what they said the night before. I personally believe this to be NOT just a smoke screen, but a bald faced lie. Dr. Satcher was NOWHERE to be seen, and when he did show up in the afternoon for about 15 minutes, he asked "Where are we?" -- he didn't seem to know what had happened that day.

Jill McLaughlin and Mary Schweitzer got in some good questions to Satcher and he didn't have the answers. Satcher tried to get the CFSCC panel members to answer. The panel members were passing out both NIH an CDC brochures that had NEVER been sent to patient groups for comment that listed the TOTALLY discredited physician's survey of 1989 which estimated that ME/CFS was affecting approximately 4 to 10 per 100,000 people in the US.

I was prepared with a print out of the CDC web page that said the prevalence of ME/CFS among white women in the US was 340 per 100,000, which is almost 100 times greater than their February 1999 brochure was admitting. Dr. Satcher said, "there was NO excuse for inaccurate numbers coming from a government agency", and this would be changed to reflect current numbers. He seemed a bit embarrassed and miffed.

Then Satcher said he had to leave. I met him at the door of the room and showed him both the brand new brochure and the CDC printout I had made the night before from the very CDC site that had said 340 per 100,000. I said, "Excuse me Dr. Satcher, but we are not talking minor discrepancies here, these people are not understating the magnitude of the problem to you by 10%, or 20%, or even 50% or 100%, but by a FACTOR of 100. If the government came out and admitted that AIDS or CANCER had been underestimated by a FACTOR of 100 times less than the amount of real disease, there would be riots in the streets, and AIDS groups would be stoning the building as we speak".

Dr. Satcher then glared at his handler, Art Lawrence, and said "Were you aware of this?" in a very direct and sharp, and quite angry tone. Dear old Art looked like a kid who's puppy had crapped all over Grandmom's favorite Persian rug. He looked petrified. Art said, "I ... uh ... no ... uuuuh ... I ... uh, noo ,uh ..." Dr. Satcher turned to me and said, "Thank you for bringing this to my attention" and turned on his heel and walked out of the room. As he left, I said, "That is just the TIP of the iceberg."

There is MUCH more to be reported about what happened at this meeting, and I will write more later.

TMH
for RESCIND, Inc.

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Testimony of Tom Hennessy
before the CFSCC

Physician Education: The NEW Good Samaritan story

Surgeon General Satcher, Members of the Committee, Ladies and Gentlemen:

Everyone wants to get positive reinforcement. Everyone wants to get a good report card. After 12 years in the trenches fighting one of the most vicious illnesses known to mankind, fighting each and every day to live another day in abject misery, often unable to "lift a toothbrush to our mouths for ten days at a time" (Dr. Michael Crouch, 4/21/99), fighting for just benefits for fair insurance treatments, for Medicare to help with prohibitively expensive medicines, fighting ignorant and often abrasive social security staffers, fighting "deep throats" high up in the Social Security system for supplying slanderous, and libelous comments to the editorial board of the Wall Street Journal, and fighting hired gun "so-called independent" medical examiners, who are paid bonuses by Insurance companies to deny claims, we would like to be more positive. But with any semblance of integrity, we cannot. In fact, we cannot compliment this CFSCC group on hardly anything.

Here we are, two years into the term of a committee that patients have been calling for the past decade, a bridge between desperate patients hungry for even a morsel of hope, and an ignorant, and arrogant bunch of bureaucrats who are anything but faithful to the very tenets in the CDC Mission statement. What has been accomplished so far? By most reasonable people's accounts, Not MUCH!! A satellite conference that was started long before this committee was finalized, that one speaker yesterday said was attended by approximately 2 health care providers on average at 70 odd sites around the country.

So what does the brain trust decide should be done? "Let's get NEW voices involved." Let's get a new bunch of patients to tell us how physicians should be educated. This suggestion is ludicrous on its face.

The problem is NOT the need for "new" voices, It is that they have not listened to the "OLD" voices for the past 15 years. If you did not hear one more new voice for the next decade, but just acted on the will of the people, as expressed repeatedly and passionately for the past decade and a half, we would be much further along. Unfortunately, "the political reality is that the system believes it can resist the opinion and the desire of the American people." -President Bill Clinton, 4/9/99

But the millions of people who suffer from these brutal diseases throughout the world, are nothing if not resilient. We will survive and eventually we will prevail.

So, on to today's topic: "physician Education". Going back to basics, we would like to address the who, what, when, where, why, and how of physician education.

Who should teach doctors how to diagnose and treat these illnesses? We think it should be the medical associations, the medical schools, and the government agencies -- AND the patients.

So we went back to the mission statement of the CDC. It reads like this: "To promote health and quality of life by preventing and controlling disease, injury, and disability."

Now, 15 years into the most recent ME/CFS epidemic, the CDC and its staff have failed miserably on almost all accounts. The Man responsible for the most accurate reading of the symptoms of this disease to date, Dr. Melvin Ramsey has said (30 years ago): "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time a patient persists if physical effort after its onset; Put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis: However those who get early detection and enforced bed rest at the onset have the best prognosis."

Yet, our government does not even count people until they meet their putative research case definition, which is 50% reduced in daily activities for at least 6 consecutive months. If you used the same restrictive and fallacious criteria for cancer or AIDS, most people would be DEAD before they ever met the criteria for having the disease. So, our leaders are telling us the exact opposite of what we should be doing to return to health and once again becoming productive members of society.

Should we be surprised? Not really. Just look at Heart Disease, the number one killer in America, there were 481,000 deaths from heart attacks last year, almost half, approximately 250,000 died within ONE hour of their first symptoms. So waiting for an illness with obvious cardiac involvement to disable a previously vigorous man, woman or child to less than 50 % of their premorbid activity for six consecutive months is unproductive in the extreme.

So, WHO should we listen to? At RESCIND, Inc., we suggest giving everyone equal voice and equal weight. Dr.Carol Jessop, who documented even the most minute details of 1,600 women with ME/CFS like illness in the mid 1980's in the San Francisco Bay area, stated at the first National Conference on CFS back on April 15, 1989, "Everything I know about this illness, I have learned from my patients." Hippocrates made a similar comment 2,000 years ago.

Yet in the past two weeks, I have had two telephone conversations with Ms. Lillian Abbey, representing this committee, and two e-mails, plus a conversation yesterday in which she said, "Under no circumstances are you going to be allowed to speak for RESCIND, Inc. at the next meeting. We want 'new' voices at this meeting." They have not listened to one word from the patients in the two years they are in existence and they are trying to "fix" the presentations so that they can line up people to suck up to them, rather than criticize them like they so richly deserve. We have contacted You, Dr. Satcher, and have constantly been referred back to this committee. Then why do we have to be hassled 5 times in two weeks on who will speak for an International Group that gets more than 1,000 "hits" per week on our website, more than 400 e-mails per week, and hundreds of letters and telephone calls as well. Practically half the speakers today, have asked us to present for them, because they were too sick or too poor to attend. All this for 5 measly minutes. If you people had half a brain, you would be begging us for information at every turn.

Why does one organization have a monopoly on the positions on the committee, when the Federal guidelines call for "balanced" membership. Newcomers might not notice, but the most vocal advocate for patient's rights on this committee is not here. Ms. Kristin Thorson resigned in disgust, rather than continue this "charade." Her resignation letter is attached. IT must be entered into the minutes, in its entirety. It should be read by any and all people interested in the truth.

WHAT should the physicians be taught to teach others about this pandemic? RESCIND, Inc. once again says "listen to the people." We asked our members and got dozens of opinions. We brought about a dozen samples of the material sent to us in the past month on places that physicians need to be educated. The MPWC's are a group of medical professionals with ME/CFS and they are just what they claim to be, a group of people with medical degrees who also have these illnesses. They should have a permanent seat on this panel and should be part of every presentation to Secretary Shalala as described in the Charter of this very committee. Has this committee, ever, in the past two years made a report to Secty. Shalala? If so, has it been made available to the public? What about the yearly action plans called for by Congress?

Then there needs to be a mechanism for Doctors who treat patients and patients who try different treatment modalities to put up information on the Internet, where people can download the information to try with their own patients. Dr. George Curlin has been agreeable on that front. We asked for an Internet presence for the CDC and the NIH back in 1994 and he listened and helped implement the current information. We thank him for that.

When should the physicians be educated? Yesterday!!!! The slothlike behavior of our government agencies is bordering on the criminal. A decade ago last week, I was asked to describe one person's "Living Hell" with this disease to the aforementioned conference in San Francisco, Dr. Phil Lee was the chairman of the San Francisco medical board at the time, and Dr. Tony Komaroff was the lead doctor. I said, we needed help immediately. I had been very sick and bedridden for a year and a half at that time, and I did not have rent for the next month. I stated that "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!" There was thunderous applause. Dr. Komaroff stood up and said, "You have just seen a Hall of Fame pitcher throwing strike outs in the World Series." But NOTHING was acted upon. It is a decade later almost to the day, and very little has changed.

We need doctors to take accurate and adequate histories. Without uniform markers, a patient's history is critical in every stage from diagnosis, to treatment, to help with disability forms, for back up for Social Security disability and for any chance for recovery. But with the average HMO visit lasting 7 minutes, this will never happen.

We need a "Rapid Response Team" to respond to the drivel put out by major news organizations. We need to locate, fire, and prosecute the people in the Social Security system who fed these malicious lies to the Wall Street Journal for their editorial of December 23, 1998.

We need consistent guidelines for dealing with disability insurance for both the private and public disability.

WHY do we need to do this? There is NO one, new and unique agent that causes all this misery. Many bright people in many countries have looked long and hard for a mysterious "agent". It is our contention that ANY virus or bacteria can trigger this condition in predisposed people. We said this TEN years ago. Tony Komaroff at the time said we were on the right track. But a decade longer virtually no one is looking at the obvious overlaps between MCSS, FMS, MPS, GWS and ME/CFS.

Where do we need this all to happen? EVERYWHERE! We need to get accurate information that we ALL agree on---- patients, Doctors and researchers posted on the net. WE ALL need to be included in the brochures that are mailed out to the masses. If we don't ALL agree, the brochures must not be printed! IT is that simple. We need a PSA by top officials of the government and respected members of the medical community like Dr. Lee or Dr. C. Everett Koop with voice-overs, symptoms, a 1-800 number and a P.O. Box number for more information.

We suggest that Dr. Phil Lee be brought back in as a consultant twice a year to help act as a liaison to the patient community, because there is NO trust between this committee and MOST of the patients in this country.

HOW can this be accomplished? By requesting information. We have volumes of it. Why do the members of the government try to run from the people, To deny the great information that we can provide? It boggles the mind. We didn't start to get anyone in trouble. All we wanted was to get better, to return to a normal, healthy life. We have been almost universally treated like pariahs, like lazy malingerers, like con-men and women, like grifters, like a bunch of meretricious valetudinarians. The facts could not be farther from the truth.

Five years ago, I stated at a CDC conference on these illnesses that "YOU can't handle the truth!" This is more true now, than ever before. With serious malfeasance of millions of dollars by members of this committee, all the while friends of ours dying horrific, brutal deaths, stripped of their dignity, and any rights to life, Liberty and the pursuit of Happiness. This is criminal behavior.

I urge you Dr. Satcher, to wipe the blood off your own hands and clean house. The very lives of more than a quarter of a million Brave Gulf War Veterans depends on it. And Millions of other Americans who are mistreated, undertreated, or not treated at all.

We want the Good Samaritan story to have a happy ending. You have a chance to make it happen. You can remain part of the problem or you can pick yourself up, dust yourself off, contact the real fighters in this battle and get down to the hard work that needs to be done. The choice is yours and yours alone!.

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