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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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good points about complexity of illness, cfs

Discussion in 'Other Health News and Research' started by xrayspex, Jul 18, 2010.

  1. xrayspex

    xrayspex Senior Member

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    I was trying to better understand the events leading us upto today and just read this and it makes me wonder about the prudence of putting so much hope into the significance of finding thee bug, and what it really means and what does he mean about the implications aids is a bit of a scam how it was handled, even in the end?


    The following book review by Fred A. Cline, Jr. explores parallels between AIDS research and research into Chronic Fatigue Immune Deficiency Syndrome (CFIDS) and exposes the politics behind the reductionist approach taken by the HIV/AIDS establishment.
    BOOK REVIEW

    Johnson, Hillary
    Oslers web; inside the labyrinth of the Chronic Fatigue Syndrome epidemic.
    New York, Crown, 1996. 720 p.

    I have just finished reading the above book, which I recommend to all who would attempt to understand the AIDS epidemic, CFIDS and all the other chronic diseases that plague our society.
    One is, first of all, struck by the contrasts, as well as the similarities, between this book and Peter Duesbergs Inventing the AIDS Virus. [Peter H. Duesberg. Inventing the AIDS Virus. Washington, D.C., Regnery Publishing, 1996. 722 p.] The Kirkus Reviews compares it to And the Band Played On by Randy Shilts, but this is based on the idea that retroviruses cause disease and are contagiousa comparison that could only be made if one were to believe that HIV is the germ that causes AIDS and that CFIDS could be a contagious disease. One of the arguments used by Dr. Duesberg in proving that AIDS could not be caused by a pathogen is that the overwhelming majority of those afflicted with AIDS are men and that germs do not discriminate between the sexes. In the case of CFIDS we have a reversal of this phenomenon, so that most of the cases are women. If logic holds, then CFIDS also should not be caused by an infectious agent. In spite of this obvious biological law, so conditioned are we as a society to attribute all diseases to a germ, the clinicians and researchers (outside of those who steadfastly maintain that CFIDS is a psychiatric disorder) put all of their efforts into finding the bug that caused it. This book is largely the story of that search.
    We are told that the author worked on the book for nine years. In amassing a wealth of material, the author has used the literary technique of shifting from person to person and locale to locale in a roughly chronological manner to make some sense out of this mass of information.
    Sir William Osler (1849-1919), whose name appears in the title and is quoted frequently throughout the book, was a Canadian practitioner who taught medicine...in Canada, the United States, and at the time of his death, England. (p.128). He was a great diagnostician who believed in listening to the patient.
    The story begins with the outbreak centered at North Shore, Lake Tahoe, in 1984. Dan Peterson and Paul Cheney, two young and adventurous internists, who had just set up a practice at Incline Village, Nevada, soon find that their medical practice is dominated by this syndrome. They, both wanting to do the most for their patients, very quickly discover themselves dealing almost exclusively with it to the neglect of their other patients. Many patients can not afford the tests necessary so that they begin to absorb the costs in order to attract patients and thus gather more data on this puzzling disease. Paul Cheney, who also holds a Ph.D. in Physics, would later separate from his partner to establish his own practice in North Carolina, but his interest would not wane, and he would later come to question the whole scientific fix preferred by most researchers and the biomedical establishment. Because they pursued the infectious theory of the disease, they were soon in trouble with their neighbors, who depended upon tourism for a living.
    In pursuing the etiology of this syndrome, the most significant breakthrough came with the tests administered by neuropsychologist Sheila Bastien of Berkeley, Calif. She revealed the disease to be a bona fide brain syndrome in 1986 and...by 1991 had evaluated more than three thousand patients. (p. 550). Other tests, including MRI, BEAM and other high-tech tests, revealed brain abnormalities in almost all of the patients.
    Peterson and Cheney, as well as the patient support groups that sprang up, geared up to find the pathogen creating this brain abnormality. Through pressure put on Congress, a small amount of money was finally appropriated to do research, although most of the money was raised from a few well-to-do individuals. The focus of their research was to attempt to find a retrovirus as the primary cause. A major retroviral researcher, Elaine DeFreitas, did not complete her research because of the lack of money and her own disability caused by an automobile accident. HHV-6 was also considered, but it was never a major contender as the cause. As in AIDS, none of this research has been conclusive. The major difference is in magnitude, so that $35 billion has not been squandered as it has been in AIDS research.
    The money appropriated by Congress was almost entirely misspent in a half-hearted attempt to find an organic cause of the disease. The governments line has been, and continues to be, that propounded by Stephen Straus of the National Institute of Allergy and Infectious Diseases. He maintains that the disease is a psychiatric disorder. The CDC in its early investigations at Lake Tahoe, and later, has also largely followed this line of thought.
    It is interesting to note that the author, while being largely stonewalled by the NIH, was given ready access to the files of the CDC. The CDC comes off as a bungling, self-serving governmental agencynot the sinister generator of nefarious plots as related in the Duesberg book.
    Since CFIDS has not been a reportable disease, it is not exactly known how many victims there are in the U.S. Estimates range from 1-2 million to 10 million. These people (from the index) have the following bizarre symptoms: aching joints, acne, aphasia, ataxia, balance problems, brain damage, cancer, cognitive dysfunction. cold sensitivity, dents in the legs, depression, lack of depth perception, disorientation, dizziness, drug sensitivity, electrical sensations in the teeth, exhaustion/fatigue, fever, loss of fingerprints, flu-like symptoms, focal paresis, hair loss, headaches, severe immune dysfunction, inability to concentrate, IQ loss, light sensitivity, loss of libido, loss of memory, metabolic rate disturbances, insomnia, seizures, a shrinking forearm, etc. In short, their lives become intolerablemany lose their jobs, their marriages, their money, etc. Since it is not a recognizable disability, they seldom get support from their medical or disability insurance. Although the outcome of AIDS is often death, CFIDS victims are subjected to a lifetime of nightmarish existence with little hope for recovery. Many commit suicide.
    Paul Cheney has recently dropped out of the search for a single bug that might cause the disease and has become a medical philosopher and part-time practitioner operating by telephone out of his remote digs on an island off the coast of North Carolina. He refers to this as his virtual clinic. Because his understanding of the syndrome and its importance in relationship to other chronic diseases, I shall quote this section of the book in its entirety. (N.B. I must confess that I have written this largely as a vehicle to get out the message that Paul Cheney gives us. The value of the book to me has been to observe a brilliant mind coming to grips with an almost insoluble problem. He has reached the only conclusion that an honest heart and mind could come up with under the circumstances.)

    During the two years since the CDC had publicized its failure to replicate DeFreitas experiments, Cheneys fascination with the triggerthe viral agent that caused the diseasehad begun to wane. One of those who had influenced his thinking was Jeffrey Bland, a nutritional biochemist who had been a senior researcher at the Linus Pauling Institute and was the author of several books on nutrition. Bland decried what he described as the "post-Renaissance reductionism of modern medicine," the notion that all diseases can be reduced to a single-point causea toxin or a microbe. Some diseases did not; instead, they fell into a complex matrix of predisposing genetics, environment, and myriad other elements.
    "Were all unique," Cheney said. "If you give agent X to ten people, will they all get the same disease? No. HIV is a reductionist model that has failed." Cheney was convinced that the reductionist model ultimately would fail chronic fatigue syndrome sufferers, too.
    "The way for me to have made a breakthrough with the CDC would have been to present them with a bugto define for them a reductionist course. And if Elaine or Michael Holmes or whoever has the bug were to present it to them, the finding would galvanize the agency, but [CFS] would go the way of AIDS." he continued, in a reference to medicines failure to cure or even dramatically medicate the fatal disease despite the presence of a bug and a multibillion-dollar research effort. "Whatever the mechanism of CFIDS, it becomes VERY complex. Reductionism wont help the patient once the patient is ill. Without a tremendous advance in our ability to kill viruses, we have to start thinking about the PROCESS of illness."
    The process of CFS was like falling dominoes, or the chain reaction of nuclear fission. Once the slide began, Cheney increasingly believed, the instigator was irrelevant to the outcome, which was inevitably a momentous and intricate constellation of "multiple injuries" to the body. "All great avalanches start with something very small," he said. "It is not unlike the theory of chaos in which a butterfly flaps its wings in Japan and starts a hurricane in Florida. It becomes like a snowball going downhill. One doesnt necessarily care what the little pea was that caused all this shit. You can find the pea, but what do you think that is going to do? NOTHING.
    "These patients," Cheney continued after a pause, "are like a ship sitting in the water. And below the waterline the ship is full of holes and theyre sinking. You keep plugging holes, but theyre still sinking. Sometimes you do exactly the right thing, but you dont know it, because this disease is a MULTIPLE injurythere are MANY injuries. If I disregulate your immune system, and that disregulates your brain and injures it, and the injured brain now makes hormones that become toxic to you, which further injure you so that your natural killer cells drop and allow the reactivation of viruses you caught in childhood, which further injure youwe now have about seven holes below the waterline. Systems break down, problems beget problems. There are secondary, tertiary and "quartiary" issues. After a while, what is wrong with you is more important than what started the avalanche."
    Looking back upon his own and his collaborators long search for the cause, the doctor noted, "We went through this rising tide of "science will prevail." But we need a new way of thinking. This disease is made up of complex networks of interacting systems. One should never give up looking for the bug, becausewho knows?it might exist. But we may never find the bug. And even if we find it we may never be able to do anything with it. "Reyes syndrome," he added in a reference to the deadly childrens disease that could be triggered by the administration of aspirin during fever, "is caused by chicken pox. But you cant cure Reyes by killing chicken pox. The issue of causality might be important in PREVENTING CFS, but it wont help you once you get the disease."

    If, indeed, the government and the biomedical establishment are oriented toward a reductionist approach to disease, why then did they invent the AIDS virus (as Peter Duesberg and others contend) in the case of AIDS and have not even recognized that CFIDS is a legitimate disease? I seriously doubt they would have accepted the bug as Dr. Cheney believes had he and his friends discovered it.
    After reading these two books, it is abundantly clear to me that ALL grant decisions and monies appropriated by Congress are politically inspired. In the case of AIDS, the CDC was on the right track in recognizing it to be the result of lifestyle and drugs in the gay community. In 1984, however, as related in Inventing the AIDS Virus, they announced that they had found the probable cause of AIDS in HTLV-III and the rest of it is history. It soon became dogma. What are the political reasons for this? One can see that there was clearly an element that wanted to control sexuality in our society, especially gay sexuality, as they considered it immoral and possibly a threat through contagion, to the whole population. ACT UP, through its obstreperous tactics, embarrassed the Reagan administration. By giving them a disease and a drug, they won over many gays and quieted the activism. (As it turned out the drug, AZT, actually ended up CREATING the disease that it was supposed to alleviate. This can only be considered diabolical.) Thousands of top scientists were also suddenly back in business after having been put out of business by the end of the cancer war. These and other elements were thus benefited, and even the gay community was brainwashed into believing in the 100% fatal virus, thus shutting them up and winning many votes from that quarter.
    So what is the reason for NOT wanting to find a viral cause for CFIDS when they so easily invented one for AIDS? Again, it is a political decision. As with the Gulf War Syndrome, etc. there were no political benefits to be accrued from inventing a pathogen. Furthermore, there was no longer a necessity for further deception since AIDS was greasing the wheels of science, governmental agencies, the pharmaceutical companies, etc. There was no need for it, and, on the contrary, to have recognized CFIDS as an organic disease would have bankrupted the disability program of Social Security as well as many private insurance programs. Full-blown CFIDS is a totally disabling disease with average age at onset thought to be about 37-38 and the patients do not die. If they do not commit suicide, they face a lifetime of disability payments. Also, since these patients are extremely allergic to most drugs (as AIDS patients are not) there are few benefits that could accrue to the pharmaceutical companies.
    My conclusion is that the two booksInventing the AIDS Virus and Oslers Webare both reporting what is taking place in our society, although, on the surface, they seem to contradict one another.
    All of this points up the fact that we are not dealing adequately with our chronically ill, so that they are a growing probleman enormous problem! Alzheimers disease is also a disease of the brain, as we all know. Around 4 million people suffer from this disease and also need intensive care for a protracted period of timeuntil their ultimate demise. Because they are largely older people (most of whom are organized and therefore have political clout) they have not been neglected as have the younger CFIDS sufferers. This appears to me to be a monstrous case of triage driven by political expediency.
    Sooner than later, I hope, we will, as Dr. Cheney did, chuck the reductionist approach and begin to look at the whole picture. We can do that now because modern technology assists us in that process. I do not pretend to know the answer, if, indeed, there is one answer, but it is obvious to me that people are getting sick on a mass scale, just as our environment is suffering from pollution and also dying. Ultimately we, as part of nature, will die along with nature, unless we give up our myopic ways and come to terms with real problems instead of relying upon temporary political solutions arrived at through artifice, manipulation of the public, and yielding to misguided pressure groups.

    Fred Cline, San Francisco
    Wednesday, June 12, 1996
     
  2. Mithriel

    Mithriel Senior Member

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    I don't who Fred Cline is, but he has been proved wrong. HIV does cause AIDS; if you don't get the bug, you don't get the disease.

    XMRV has been accepted as a very likely cause of ME by many of us, not because we are desperate for any solution but because it explains so many of the complex symptomology.

    The biology of XMRV means that it can cause a cascade of problems but it is the initial instigator. HIV does the same in AIDS. It is the doorkeeper which opens up the body to a flood of other problems and infections.

    ME was first identified in epidemics so it must be infectious. The myth that it is not was spread by the CDC as part of their attempts to trivialise the illness their first step being to refuse to call it ME but to give it the ludicrous name of CFS.

    Cheney has been a good friend to CFS but he changes his theories all the time. He is trying to find a cause and to help us but it is very confusing.

    There are lots of authoritative sources for the history of ME and CFS.

    Mithriel
     
  3. xrayspex

    xrayspex Senior Member

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    Mithriel
    oh yea I get that about HIV and aids, what I don't get is this review must have been written in 96, so I am not sure what he is alluding to, the politics of his statements along with Cheneys' comments though, do make me think there is a bigger way to look at all of this, even if one bug does have a lot to do with something.....I get sick just from taking one drop of wormwood or minute amount of artesenuate.....can only imagine what taking an antiviral all the time would do to me, sigh
     

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