General ME/ICDCFS Quotes

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Sep 14, 2006.

  1. lenasvn

    lenasvn New Member

    General ME/ICD-CFS Quotes

    Up to 1955, recognised M.E. was clearly previously associated with poliomyelitis. The viruses that cause paralytic poliomyelitis are some of the same viruses that cause M.E. But these enteroviruses that are capable of causing paralysis attach to more than one set of tissue receptors. These other receptors are found on different cells in the brain and spine as well as in other body areas. The symptoms described by M.E. sufferers are due to injury to these other cells.

    The Clinical and Scientific Basis of ME/CFS Dr Byron Hyde p. 115

    On the lack of funding given to legitimate M.E. research, Dr Byron Hyde M.D. writes: Without heed, we are sitting on the edge of a cliff, waiting for disaster. For many sufferers of M.E. that disaster is already here, and few are listening.

    The Clinical and Scientific Basis of ME/CFS p. 115

    "The proper term for my selective difficulty in dealing with numbers is "acalculia." But I prefer to believe that I multiply and divide numbers the way a new Chinese immigrant speaks English, as if I’d never really seen the alphabet before, as if I couldn’t quite form the sounds. So I think of my math as having an accent."

    Floyd Skloot: In the Shadow of Memory

    "When syphillis was gravely untreatable, Sir William Osler said, "To understand syphillis is to understand all of medicine." Explains Dr. David Bell, "I cannot think of a better description of CFIDS. Virtually every organ system is involved." Since few doctors ‘understand all of medicine’ these days, CFIDS has been approached from a number of different angles, with specialists entering the labyrinth of illness from all sides."

    Peggy Munson in Stricken: Voices from the Hidden Epidemic of CFS

    "The only doctor supplying real relief from the grueling pain is one who ends it permanently. People with CFIDS need more options. ...CFIDS must be seen simply for what it is: a devestating physical illness that can make the most mentally stable people contemplate suicide....sometimes the grief from my losses is unbearable."

    Peggy Munson in Stricken: Voices from the Hidden Epidemic of CFS

    "I had no idea that my place in epidemiological and cultural history would play a giant role in the was my illness was perceived. I simply collided with a pathogen. In 1992, on a day in May, the sky started spinning"

    Peggy Munson in Stricken: Voices from the Hidden Epidemic of CFS

    "Unfortunately the silence and invisibility of CFIDS patients has effectively been perceived as tacit agreement with the status quo."

    Peggy Munson in Stricken: Voices from the Hidden Epidemic of CFS

    "...And from where does this burnout arise you might ask? Try years of explaining my nvisible symptoms to a society that just didn’t buy it. Basically every day I had to defend my credibility....This took a toll....I have given the "I know I look fine but really I am very, very sick and spend half my existance bedridden" speech literally thousands of times. Each time I hope I get the understanding nod, not the dreaded squinting of disbelieving eyes. Each eye squint cuts away at my self esteem."

    June Stein in Stricken: Voices from the Hidden Epidemic of CFS

    "Most New Age "positive thinking" is just Christian Science-derived denial dressed up in more exotic, and modern, clothing. It’s sexy because they claim they can heal our deepest pain. It sounds too good to be true, and it is."

    Caitlin MacEwan in Stricken: Voices from the Hidden Epidemic of CFS

    Suppose that, in the 'bad old days' before polio vaccination, a parent whose child had died had been told: "She stopped breathing on purpose you know." A public outcry would surely have ensued. And imagine if the next remark had been: "Tell me, did you encourage her in this belief that she couldn't breathe?" The mere idea of such an attitude, quite properly, takes the breath away. Yet children with severe ME, unable to walk or even to eat, are often considered to be shamming and all sorts of bizarre startegies have been used to try to expose this. Some have been left lying on hospital floors in an attempt to make them get up and put themselves to bed; some have been told that their parents do not want them at home until they behave and stop pretending to be ill; some have been refused liquid feeding and starved in an attempt to make them eat when they have lost the ability to swallow. And their parents have been suspected in colluding in, if not causing, a phantom illness. All this is happening because of the tragic conviction that these children are psychologically rather than physically ill. [...] How is it that we could think that pain and severe disability is such a desirable state to be in that thousands of children all over the country would choose, quite independently of one another, to invent it?

    Jane Colby in ME: The New Plague (p22)

    Right back in 1970, it was shown by Gatmaitan, Chason and Lerner that when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented. In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with ME.

    Jane Colby in ME: The New Plague (p35)

    'Fatigue' is the wrong word. Fatigue is a silly word.

    Dr Elizabeth Dowsett in ME: The New Plague (p167)

    [There] are deaths from ME. The point is that people dissociate these. There are cardiac deaths, there are brain deaths, there are tumour deaths, there are liver deaths, all kinds of deaths. They never get realted to ME in any statistics but death certificates are erronous today because so few post mortems are being done. One of the reasons is that people are afraid of legislation if an error is made.

    Dr Elizabeth Dowsett in ME: The New Plague (p172)

    "I have no doubt that any physician that does listen carefully will be convinced of the specificity of the symptoms of this syndrome very quickly. But a physician who spends only five minutes per visit will not perceive this pattern of symptoms, even after examining a hundred patients with CFIDS."

    Dr David Bell MD: A Doctor’s Guide to CFIDS

    "It is ironic that in this day of specialists, the generalists have been the only group of physicans able to recognise the spectrum of symptoms in CFIDS as a specific syndrome. But in our era of technology, it is rare for specialists to listen to generalists."

    Dr David Bell MD: A Doctor’s Guide to CFIDS

    "Stress aggravates symptoms but does not cause them, a condition no different in CFIDS from that in other illnesses. Walking on a twisted ankle may aggravate the pain but did not cause the twisted ankle originally."

    Dr David Bell MD: A Doctor’s Guide to CFIDS

    "A recent study followed a group of patients with glandular fever for six months from the time they became ill. It was found that social adversity in the six months prior to illness onset was not associated with the subsequent development of CFS (diagnosed six months after illness onset in those who remained unwell). Stress is not responsible for the symptoms of CFS; it does not cause CFS. When someone has CFS, removal of any stress does not remove the illness, although it may help with management."

    Victorian CFS/ME society

    "It is well-established that the mere fact of knowing what hurts you has an inherent curative value"

    Hans Selye M.D.

    "In nearly every patient there are signs of disease of the central nervous system"

    A New Clinical Entity? Editorial: Lancet 26 May 1956

    "For the patients, there is no question that the illness exists. For the physicians who see these patients, the similarities among them allow ready identification of a distinct clinical illness. For those who scoff at this concept, one can only query as to what happened to their curiosity and their ability to listen to their patients"

    James F Jones: Physician, National Jewish Centre for Immunology, Denver, Colorado: Statement to the House Appropriations Subcommittee, 25th April 1989; published in CFIDS Chronicle, Spring 1989 pp 28-30)

    "It is a real organic problem and people who have it don't need the additional stress of hearing doctors tell them they are crazy"

    (John Esdale, Rheumatologist, Montreal General Hospital; Chronic Fatigue Syndrome wreaks havoc with victims' lives: The Gazette (Montreal, Canada) 15th November 1988; reported in CFIDS Chronicle, Spring 1989, p 79)

    "The crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states"

    Dr Melvin Ramsay, President, UK ME Association. ME Association Newsletter, Winter 1989: 20-21)

    "A news release in the July 4 packet confused chronic fatigue with chronic fatigue syndrome; the two are not the same. We regret the error and any confusion it may have caused"

    John Hammarley: AMA Science News Editor, JAMA 1990

    "The NK (natural killer) cell is a very critical cell in (ME)CFS because it is clearly negatively impacted. The most compelling finding was that the NK cell cytotoxicity in (ME)CFS was as low as we have ever seen it in any disease. This is very, very significant data. (In (ME)CFS) the actual function was very, very low --- 9% cytotoxicity: the mean for the controls was 25, In early HIV and even well into ARC (AIDS related complex, which often precedes the fully developed condition), NK cytotoxicity might be around 13 or 14 percent. (ME)CFS patients represent the lowest cytotoxicity of all populations we've studied"

    Nancy Klimas, Professor of Medicine, University of Miami School of Medicine; Director of Immunology; Director of AIDS research and Director of the Allergy Clinic at Miami. Presentation: Immunological Markers in MECFS. The CFIDS Association Research Conference, November 1990, Charlotte, North Carolina. Reported in CFIDS Chronicle, Spring 1991; pp 47-50)

    "A patient examined in the morning might have nystagmus, which would disappear at midday, recur later, disappear later and recur the next day"

    A. Jain: Clinical Observations of Central Nervous System Dysfunction in Post-Infectious Acute Onset ME/CFS. In: The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome ed: BM Hyde, J Goldstein, P Levine pub: The Nightingale Research Foundation, Ottawa, Canada 1992)

    "CFIDS has an organic basis; it is not a psychiatric illness. Our Surveillance Study does not support the notion that (ME)CFS is a psychiatric illness, and in fact, suggests that it has an organic basis"

    Dr Walter Gunn, Principal Investigator of (ME)CFS studies at CDC: CFIDS Chronicle, February 1992, page 1)

    "The performance of the CFIDS patients was sevenfold times worse than either the control or the depressed group. These results indicated the memory deficit in CFIDS patients was more severe than assumed by CDC criteria. A pattern emerged .supporting neurological compromise in CFIDS"

    Curt Sandman, Professor of Psychiatry and Human Behaviour, University of California School of Medicine: Memory deficits associated with chronic fatigue immune dysfunction syndrome: Biol Psych 1993:33:618-623

    "The worst cases have both an MS-like and an AIDS-like clinical appearance. The most difficult thing to treat is the severe pain. Most have abnormal neurological examination. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self"

    Paul Cheney, Professor of Medicine, Capital University, USA: Testimony Before the FDA Scientific Advisory Committee, 18 February 1993

    "The spectrum of illnesses associated with a dysregulated immune system must now include (ME)CFS"

    Paul H Levine, Research Professor of Epidemiology and Biostatistics, George Washington University, Washington DC: Summary and Perspective: Epidemiology of (ME) Chronic Fatigue Syndrome: Clin Inf Dis 1994:18: (Suppl 1):S57-S60)

    "Abnormalities of immune function, hypothalamic and pituitary function, neurotransmitter regulation and cerebral perfusion have been found in patients with (ME/CFS). Recent research has yielded remarkable data. The symptoms of (ME)CFS have long been viewed as a neurologic pattern, as confirmed by other names such as myalgic encephalomyelitis. A link is being forged between the symptoms pattern of (ME)CFS and objective evidence of central nervous system dysfunction. The view that (ME)CFS is a primary emotional illness has been undermined by recent research"

    Dr David S Bell: Instructor in Paediatrics, Harvard Medical School: Chronic Fatigue Syndrome update: Findings now point to CNS involvement: PostgraduateMedicine 1994:98:6:73-81)

    "In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages"

    Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

    "I take great issue with the current recommendations that no additional testing should ever be done. I believe there are indications for more advanced testing"

    Dr Daniel Peterson: [a Diplomate of the American Board of Internal Medicine who first identified CFIDS during an outbreak in Incline Village, Nevada, in1984] JCFS 1995: 1:3-4:123-125). At the Second World Congress on ME/CFS and related disorders, held in Brussels in September 1999, Peterson said he was amazed at the misconceptions that existed about ME/CFS; he said that ten years ago, he believed ME/CFS would be resolved by science; he had now changed his mind and believed it could only be resolved by politics)

    "The most seriously affected individuals may be bed-ridden most or all of the time and can do little or nothing for themselves. Recent research has made it clear that the view that there were no specific changes demonstrable in patients with ME/CFS has become untenable"

    Dr Derek Pheby: Director, Cancer Epidemiology Research Unit, Bristol University: CFS: A Challenge to the Clinical Professions. Physiotherapy 1997:83:2:53-56

    "The signal abnormalities in ME/CFS patients most closely resemble those seen in AIDS encephalopathy. Patients often experience rejection by family, friends and physicians. The illness is hardly 'imaginary' "

    Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: Clinical Crossroads: Conference Report: JAMA 1997:278:14:1179-1185

    "The most important thing is not to have (patients) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA"

    Paul Cheney, Professor of Medicine, Capital University, USA: Presentation in Orlando, Florida, February 1999 at the International Congress of Bioenergetic Medicine

    "In summary, there is now considerable evidence of an underlying biological process in most patients (which) is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest"

    Anthony Komaroff: Assistant Professor of Medicine, Harvard Medical School: Editorial: Am J Med 2000:108:2:169-171

    "In ME, there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may affect the myocardium"

    Dr John Richardson: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies. The Haworth Press Inc, New York, 2001

    "There is considerable evidence already that the immune system is in a state of chronic activation in many patients with (ME)CFS"

    Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: American Medical Association Statement, Co-Cure, 17 July 2001

    "New Survey reveals Chronic Fatigue Syndrome (ME) is as disabling or debilitating as lupus, multiple sclerosis and rheumatoid arthritis. Many medical professionals are acknowledging it as a seriously disabling condition. Three quarters of medical professionals responding to the survey believe that (ME)CFS, also known as CFIDS, is as or more disabling than other chronic diseases"

    Press Release, CFIDS Association of America, 15th November 2001

    "Inferring an overlap of "fatiguing illnesses" and ME/CFS is to lead science away from finding the etiology of ME/CFS, better understanding the physiology of the illness, and finding effective treatments."

    John Herd on Co-Cure 26th September 2004

    "The prominent association of fatigue with psychiatric disorders has greatly contributed to the erroneous psychological attributions of the illness, much to the detriment of patients. This has led to the trivialization of the illness as little more than a manageable, unexplained fatigue state (rather than the prominent more specific - and debilitating - neurological features of M.E), and the misperception that it may be treatable by little more than counseling, OTC medications, antidepressants and lifestyle changes."

    Jill McLaughlin on Co-Cure 22nd September 2004

    "I would like you to take a moment to look at the big picture. If this committee thinks its Charter is to look at any disease that has fatigue as one of its symptoms, then you will not finish in any relative timeline. I understand that you are called upon to look at CFS. CFS was called ME until 1988, when some in the US changed it to CFS. Currently the US is way behind other technologically developed countries in the terminology, official criteria and research efforts for ME/CFS. Why is this? It is because you continue to focus on the word Fatigue. It has been said many thousand times that Fatigue is NOT a medical term."

    Beverly Bugos, PhD: Testimony Presented to the CFSAC at the September 27, 2004 Meeting (Co-Cure 29th September 2004)

    Recently an international panel of experts, under the auspices of HealthCanada, developed a Clinical Consensus Definition (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols, Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003.) This definition is far superior to the various other CFS definitions and has been welcomed internationally. It includes the hallmark features of M.E. (optional in the CFS definition) and neurological and cardiovascular symptoms which more accurately represent the true symptomatology and manifestations of the illness than other current (fatigue based) definitions. This represents the current best practice guidelines for treating and managing M.E./CFS.

    Jill McLaughlin on Co-Cure 22nd September 2004

    "What physical illness is treated by "Behavior Therapy"? Only Myalgic Encephalomyeltis as far as I know. But why? First, it is a repeated lie. Behavior Therapy does not reduce M/E. severity or symptoms. It is an ineffective and fraudulent therapy for M.E. It basically is just telling the patients not to over-exert themselves - which is common sense any good physician would tell an M.E. patient (assuming the physician is familiar with M.E.)

    Who benefits by continually promoting the lie that Behavior Therapy is an effective treatment for M.E.? The psychiatric community that makes profits by giving this bogus treatment to M.E. patients. Charlatans and quacks. And the Government and insurance companies, who rather falsely portray M.E. as a psychiatric or psychological problem - to avoid paying disability benefits...or to pay less in disability benefits."

    Mike Lawson on One Click 7th October 2004

    "Yet in spite of the dire warnings about changing the name and litany of reasons why we can't or shouldn't, we are hearing that patients are more firm in their resolve that they cannot get respect, understanding, and support for research funding until the word "fatigue" is removed.

    Many STILL do not believe it is a "real" illness. Why should they – fatigue isn't an illness, it is a symptom -- as well as a normal physiological state.

    Beyond the doomsday language about name changes, Hysterical Paralysis (Multiple Sclerosis), Mongolian Idiot Syndrome (Downs Syndrome), and Gay Related Immune Dysfunction (AIDS), all needed a name change before they were accepted, respected, and funded adequately.

    It is not that people are stupid or uncaring. It is not that they do not care, they do not understand. I know for a fact that if I had not experienced the illness firsthand and learned about it, with what has been in the media and "out there" in general, I would believe what most people do.

    Even saying the illness is serious and debilitating is insufficient - so is mental illness. And truth of the matter it is, it is "fatigue" that has caused the psychiatric overlay and wasted a disproportionate amount of our meager funds studying the efficacy of psychotherapy rather than trying to find viable treatments.

    The fatigue model has failed and should not be accepted as a name or the basis for studying the illness. How much insight into the cause or pathophysiology of any illness would be gained by comparing it to any other condition which also shared one symptom.

    Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.

    And wait for the science? There will not likely ever be a marker for fatigue. The discovery of a diagnostic marker may take decades (similar to the numerous other diseases still waiting for definitive markers), especially given current pathetic CFS funding levels.The definition of insanity is doing the same thing and expecting different results.

    Meanwhile will look forward to the day where we no longer have to keep repeating the same things over and over to those who appear to be neither influenced by evidence nor swayed by logic. Meanwhile we will continue to listen to patients and do what it takes to overcome these hurdles and put even awareness back on the right track."

    Jill McLaughlin Executive Director National CFIDS Foundation, Thursday, 13 May 2004

    "CFS" has got doctors completely bamboozled because they don't seem to recognize that "Syndrome" is a fairly important word. Have you asked doctors what "syndrome" means? I have, and many don't know - pretty scary.

    Erik Johnson

    The scariest thing is that there is no end, no limit. Cindy Duehring, co founder of the Chemical Injury Information Network reached a point where the sound of her own voice would trigger seizures.

    Unbelievable enough that such things can happen. Ungodly that people you thought you knew, thought you could trust, your friends, your family, your kith and kin, your doctors, everyone... can watch you tumbling down the stairs into Hell and call you a liar every jagged step of the way. I've learned so much that I never wanted to know. When I heard people speak of a "dehumanizing illness", I thought that meant that sick people were treated so badly that they no longer felt like they were part of the human race.

    Not at all.

    I know now that this means that humans treat sick people with such inhumanity that it is THEY who dehumanize themselves.

    Erik Johnson

    I STRONGLY SUPPORT the use of "ME ICD CFS" as a means to FORCE these "fatiguers" to MAKE A CHOICE AS TO WHICH SIDE THEY ARE ON.

    As I've said many times, I cannot say "CFS" doesn't exist, since it already happened and this cannot be changed. But it IS possible to use an identifier to make damn sure what kind of "CFS" we are talking about.

    Winning the war will be far more difficult if the soldier that is supposed to be watching your backside is a psychologizer sympathizer. I think it is possible to neutralize the fatigue faction by moving forward with elements that consist of ONLY THOSE WHO MAKE THEIR POSITION CLEAR.

    The "ICD" can accomplish this.

    Erik Johnson

    "Tough it out"
    "Don't be a whiner"
    "Cut out the self pity"
    "You called this illness into your own life to be taught a lesson"
    "Use the power of the mind to create wellness"
    "Your reality is what you think it is"
    "Be strong - Like me"
    "What? Dead? Well, he should have tried to get medical help sooner!"

    Erik Johnson

  2. phoenixrising2

    phoenixrising2 New Member

    Thank you for putting all of this together. It took me awhile to read. I know it took you a good while to post it.

    I've read most of it before, but to have it all together in one place!

    I'm with Erik Johnson,"It IS possible to use an identifier to make damn sure what kind of "CFS" we are talking about."

  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

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