Friday, October 15, 2010

Tom Hennessy's ENTIRE Testimony



Tom Hennessy's (entire) CFSAC Testimony from October 13, 2010

Good Morning, Chairman Snell, Dr. Wanda Jones, members of the CFSAC, The Panel, The listening public, Ladies and Germs,
             Thank you all for your efforts to make this meeting available on the Internet, so that the millions of sick people with these conditions around the world can have some access to see our government in action, or in this case, the LACK of action regarding these brutal illnesses over the past 3 decades. 
                When I asked many of our fellow M.E. and CFS patients if they wanted me to make any specific comments to you at today's meeting, the biggest response I got was "Why Bother?" They said, "We have been telling the truth to this committee and its forerunners for more than 20 years, and NOTHING has changed. So, Why Bother?" The vast majority of sick patients have NO confidence that the HHS Director will ever even READ, let alone implement the recommendations of the CFSAC panel or the patients, who further damaged their health by working for weeks to make a clear, concise and cogent speech to this committee.     
                  For many of us, who are SO sick and SO nauseous and in SO much pain, that simply listening to TV or radio is a painful and disorienting experience. To take the time and energy to condense decades of misery into a 5 minute speech is a Herculean task. To go through all this additional misery and pain, and not even have the HHS Secretary even read or acknowledge their suffering is a very painful and humiliating experience. To go through it for decades while lying in agony in their beds is pure torture. The sheer amount of physical misery we go through on a daily basis is incomprehensible to anyone who hasn't gone through it, let alone the mental misery we all experience every single day. If I could wave a magic wand and give our symptoms to every politician and businessman on this planet for ONE week, there would be Tens of billions of dollars approved for research, by the close of business the very next week. The sheer misery and torture of a severe case of what I refer to as Myalgic Encephalomyelitis is, and I repeat, incomprehensible to those who have not experienced it. 
                       Sad to say, the vast majority of people I heard from do NOT think that anything positive will happen from this meeting, based upon the 30 year or more track record of the NIH, the CDC, the HHS, the AMA, or any other agency charged with the task of trying to help some of the sickest people on the planet get some relief from their daily misery. I am asking you today, to prove them wrong!
                        I know what they are talking about, because for the past 26 years, I have been one of them. On April 15, 1989, at the VERY first International CFS meeting, I was asked to describe in layman's terms what it felt like to have this condition, and I said that "It feels like I have been beaten with pieces of rubber hose from head to toe, 24/7 for the past 2 years! if you 600 doctors in attendance today, do NOTHING else, then put together a correct definition and 'change the God damn name' then you will have accomplished a tremendous achievement. If you DO NOT get rid of the dreaded "F" word right now, here today, before this horrendous so called "Holmes Criteria" gets a foothold worldwide, then you will condemn untold millions of sick people all over the planet to decades of misery, pain, and premature death because of your Incompetence and cowardice!" 
                         There was spontaneous and sustained applause. I was shocked. There were catcalls and whistles. The members of the Press smelled a story and they crowded around Ms. Melinda Paras and myself at the Q and A session to ask what the real symptoms were and how serious this condition really was. I said that I didn't know what caused this disease, but that it had NOTHING in common with any kind of fatigue I have EVER experienced. I said there are more than 6.2 Billion "chronically fatigued" people on this planet today. And only a small fraction will experience the sheer misery of not even being able to walk ten feet from their bed to the toilet. Or to be in SO much pain, that it will take 6 Fentanyl patches, (which are 70 times stronger than Morphine)  to be able to crawl out of bed and cook dinner for your father who is dying from Alzheimers and then cooking a separate meal for your mother who suffers from severe osteoporosis, a 35 year hiatal hernia, and cataracts. 
                         For our government, to embrace the Long Term Insurance business tag line of "Delay, Deny and Hope you DIE!" is just criminal. The stunning incompetence of our medical establishment, and the truly heartless response for at least 3 decades that I know of is no longer just incompetence on a grand scale. I believe it is one of the major medical crimes of the past 40 years! It really is that bad. 
                          Now, Today's topic is DISABILITY. How sick and disabled are we? And how can that be evaluated and documented for Insurance purposes. And what if anything can help these patients return to work as productive members of our society. If the 22,000 or more letters, resumes, phone calls and emails that I have received over the past 25 years is any guide, this patient population is exactly the type of person that wants to return to work! I believe that the compassionate, ethical workaholic is more prone than other populations to come down with these terrible afflictions. We are actually the exact OPPOSITE of malingerers. As one psychiatrist said, "these are the very type of people that others call on a Friday night to come in to work, when others want to go out to a party". (I believe that this was Peter White in the UK who made that statement. But, I have found it to be true). However, there is SOME light at the end of this tunnel. I take the following quote from the opening page of the University of the Pacific's description of their raison D'etre:
              "Despite growing scientific evidence, there has been a strong belief by many physicians, insurers and others that these disorders are psychological. The Pacific Fatigue Lab has developed unique testing protocols that help more accurately assess the physiological status of patients who may be afflicted with fatigue-related disorders. Our goal is to facilitate an understanding of the biological basis for fatigue and provide objectively determined functional evaluations and therapeutic interventions that will improve quality of life for this population".  Stacy Stevens has done 1,000's of single cardiopulmonary exercise tests on chronic fatigue syndrome (ME/CFS) over the years and close to a hundred with the Stevens' Protocol at the Pacific Fatigue Lab. They are the considered the GOLD standard for measuring functional capacity. Whether in Stockton, Ca, Stanford U, Incline Village or Ithaca, New York they see the same general pattern again and again, a unique metabolic dysfunction that characterizes and objectifies the most mystifying symptom in the disease, post exertional malaise. If Anyone looks at the most comprehensive definition of these terrible disorders, the Canadian Case Definition for ME/CFS by Carruthers et al, you will see that the degree of debility varies greatly, but that if you use Koch's postulates that to define an illness or disorder 100% of patients must be afflicted with agent X, We all suffer from P.E.M. or Post exertional Malaise. This Steven's test costs roughly $2,000, but it does not need cutting edge materials or knowledge. You just need to  apply the "Steven's Protocol" and you can verify that we suffer devastating, but reproducible and quantifiable dysfunction in our autonomic nervous system if we attempt a  brief but rigorous exercise protocol for 2 or 3 days in a row.  Even dying Cancer or AIDS patients can return to a baseline level 24 hours after exertion. We can not!
21 years ago, I asked the panel of some 627 doctors and researchers assembled in San Francisco at the Hilton Hotel to find "something, anything, that is quantifiable and reproducible by people who do NOT trust us, and who do not believe we are ill, or who think that we are malingerers".
Since 1995, I felt that the tilt table test done by Drs. Rowe and Calkins at Johns Hopkins in Baltimore, Maryland was the gold standard. In many ways, it still is. I believe, and I have repeated at more than a dozen medical conferences for people who study these conditions that Louis Pasteur was correct when he said, "The antigen is nothing, the terrain is everything!". I believe that we have cases of "Different Insult, same result".
Now, the medical Director of the CAA in Charlotte is Ms. Suzanne Vernon, PhD, who used large computer databases at the CDC to prove my theory. I believe that any type of virus, bacteria, prion, mycoplasma, or more commonly, a group of such toxic 'insults' forces its way across the blood/brain barrier, usually, but not always during a time of great stress, resulting in a dysfunctional autonomic nervous system. I suggest that it is like "stripping the gears on a fine swiss watch". We all have our own brains, and our own exposures to various toxic insults every day. Those of us who have many neurons and synapses firing in our brains are often more intelligent, more creative, and more questioning than the average person. Many of us push ourselves harder than most "thus the derogatory term "yuppie flu" which really had nothing to do with money, but the type of person who pushes themselves beyond their limits during times of high stress.
But now we have both the excellent tilt table test, and the Steven's Protocol that prove that we suffer from P.E.M. They can now prove it to Insurance companies and disability evaluators.
The next big question is "How can we fix it?" I don't know. It will take large amounts of time and money to find that out. But lying to the public and denying the existence of such a brutal group of illnesses for decades will surely not fix the problem.
Now, I do want to publicly thank Dr. Judy Mikovits and the team at WPI. Dr. Sheila Bastien and Dr. Dan Peterson were able to do the proper testing to prove my illness to the Social Security Judge some 2 decades ago. But, sadly, even though I have been to many of the top doctors in this country, I am still in excruciating nerve and muscle pain 24/7 and I am unable to even care for myself, let alone a family. As Dr. Nancy Klimas, of the University of Miami HIV and ME/CFS center said last year, "I have treated thousands of HIV and ME/CFS patients over the past 2 decades, and today, If I had to choose one or the other, I would rather contract HIV than ME/CFS. Most of my AIDS patients are hale and hearty, whereas most of my ME/CFS patients are very sick".  
I would ask the audience for a brief applause to thank both Dr. Klimas and Professor Lenny Jason, both of whom have spent the vast majority of their professional careers devoted to easing the misery and pain of this patient population. They have fought against incredible odds, and at great personal and professional expense to serve their patients and to serve on this committee. Thank you Nancy and Lenny!  
Back to Bidness! It is 30 years on that I know of, and for many patients, things are worse than ever. The so called "Reeves empirical definition of 2005" has made a bad situation worse. It is worse than worthless. The Holmes and Fukuda criteria were a complete joke to most medical researchers, and they were a cruel hoax for us patients.  Supposedly, they were designed for research purposes, not for clinicians. But, they were used as clinical definitions from day one! YOU people represent the US government and the top of the medical pyramid in this country. IF YOU don't know what the heck you are talking about after at least 30 years in, then how do you expect overworked, front line GP's to know what to do with this epidemic.  
When I first fell Ill, the expert at NIH was Dr. Stephen Strauss. He told me that what I suffered from wasn't real. He said that it didn't exist and if it did, it wasn't serious, and it would be gone in six months. 24 years later, I still can barely get out of bed to use the toilet.
Today's topic at the CFSAC is about disability. Employers and LTD companies are only concerned about two things: Can you WORK and pay taxes, or attend school and pass your courses. They want to know two things: can we perform our usual job or profession. Or can we perform ANY job in the US economy. They want us OFF their books. Period! And because there are now so many of us, with various ailments and various disabilities under a similar umbrella, they want to get us off their books by ANY means necessary, legal or otherwise.  Many of my friends and colleagues are like me. Unable to care for ourselves, let alone someone else. We are not just disabled. We are SICK! I am very ILL. I feel like I have the flu from Hell every day of the week for 2 and a ½  decades. I was a 7 day a week worker all my life. Very active. 10 or 12 hour work days. many outside activities. In one night, I ate some raw shellfish, and BOOM! my life was destroyed. OVERNIGHT. Now, I have not been able to work 1 full day in 24 years!
Sadly, my case is not abnormal. due to early activism and media appearances, people wrote to me from all over the world. They kept saying "The doctor says all my tests are in the normal range!" so, I saw "your doctor is doing the wrong tests!"      
Right, now, we are lucky to have the chairman of this committee, Professor Christopher Snell right here in our midst. He works with a Ms. Stacy Stevens out at the University of the Pacific who designed the protocol I described to you earlier. They have a test that costs about $2,000. It can demonstrate beyond the shadow of a doubt that people who REALLY DO HAVE this condition (which I call Myalgic Encephalomyelitis) and who suffer from what we called PEM or Post Exertional Malaise! Most of us can not do any extensive exercise at any time. But ALL of us can not do strenuous exercise two or three days in a row! If your meeting today is about disability and how do you define it and how do you document it? how can you verify the disability that these patients claim they have. I say Give them the Stacy Stevens exercise tolerance test 3 days in a row. I will wager that IF these patients suffer from what I call M.E. This test will put them flat on their backs for at least a month. Other speakers will speak about other topics, but this is how you can document our disability.
Where do we go from HERE? Smarter minds than mine will have to figure that out! I will finish with the same line that I did 21 years ago. The late, great Sam Rayburn said, "Any jackass can kick a barn down, but it takes a damn fine carpenter to build one. We need YOU to be those damn fine carpenters to help rebuild what is left of our lives. Thank you for your time!
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