What has happened to the Incline Village, Nevada, CFS sufferers?

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Apr 14, 2006.

  1. kholmes

    kholmes New Member

    Back in the eighties, there was a sort of "outbreak" of CFS in Incline Village, Nevada, on the north shores of Lake Tahoe. The story made national news and for me, it was the first I had heard of Chronic Fatigue Syndrome.
    Does anyone know what has happened to these people, whether they have worsened, stayed about the same, or improved, or if there was has been no general trend for the area?

    I remember that after the story, because many of the victims were upper middle class, many journalists and physicians called CFS "the yuppie flu,"--just about the most insulting name I have ever heard for a serious illness. Thank God that since then many more physicians, the CDC, and the NIH, have come to believe that CFS/CFIDS is a real, PHYSICAL illness.

    Kholmes
  2. Sandyz

    Sandyz New Member

    I have wondered the same thing. I would really like to know if these people lived a normal life span and if any of them ever got better. Maybe someone will know something about it.
  3. JenniferAnn539

    JenniferAnn539 New Member

    Good question.
  4. WoodstocksMusic

    WoodstocksMusic New Member

    I found this site along with the following article.

    http://www.orthomed.com/cfids.htm

    STATEMENT ON CFIDS

    Robert F. Cathcart, M. D.

    In retrospect, I saw the first patients with CFIDS in Incline Village about 1978. The epidemic officially started sometime in 1983 in Incline Village. I left Incline Village January 1, 1980 but continued to treat patients for chronic fatigue. My treatment was mainly with massive doses of vitamin C but it also included many other nutrients. The rationale has been that CFIDS is a free radical disease involving damaged mitochondria.

    My suspicion that chronic fatigue was a free radical disease involving mitochondria was because of the beneficial effect of massive doses of vitamin C. I was using the massive doses of vitamin C not for the vitamin C but for the electrons carried by the vitamin C. Ordinarily, when a vitamin C molecule gives up its two extra electrons to scavenge two free radicals, the vitamin C is refueled with two more electrons from the mitochondria. When the mitochondria are damaged and cannot provide the electrons then the spent vitamin C is rapidly irreversibly lost. By giving massive doses of C, this loss is prevented, and the continuing supply of fresh vitamin C substitutes for the inability of the mitochondria to provide the electrons to refuel the spent vitamin C (dehydroascorbate.)

    Not incidentally, a major function of the mitochondria is to provide electrons in the form of ATP to the muscles. Without sufficient ATP to fuel the muscles, fatigue results.

    The mitochondria are damaged by either viruses, bacteria (sometimes cell wall deficient bacteria, L-forms), yeast toxins, sensitivity to chemicals (including some drugs), allergic reactions, etc. Probably, it usually involves two or more of the above. The damaged mitochondria become the major source of free radicals. A free radical cascade results. Fee radicals from a damaged mitochondria damage adjacent mitochondria and cause them to produce more free radicals. A domino effect results. Because all this up-regulates the immune system, various autoimmune phenomena frequently result which may include aching in muscles, trigger points, etc. (fibromyalgia).

    The oral doses of ascorbic acid necessary to substitute for the inability of the mitochondria to supply electrons to refuel the free radical scavengers are at least bowel tolerance doses (see my other papers on this website.) Many patients have found that intravenous ascorbate is effective and necessary from time to time. The main problem has been with insurance not paying for intravenous ascorbate. While there is some expense involved with intravenous ascorbate it has been more effective than that drug costing $15,000 to $19,000 a year. $15,000 of intravenous ascorbate would probably have a chronic fatigue patient dancing a jig.

    Ascorbate is not usually a cure for CFIDS but in patients who tolerate massive doses orally (almost everyone tolerates IV ascorbate), it ameliorates the disease better than other treatments. This more effective amelioration is because replacing the mitochondria function of providing the electrons for free radical scavenging gets more at the basic pathological processes in the disease and it helps protect the mitochondria so they can try to repair themselves. The disinterest in the use of ascorbate is hard to understand and it has contributed to not discovering basic causes of the disease. I doubt that short of killing a virus that may be the cause of many cases that there will be found a more effective method of ameliorating the symptoms of the disease.
  5. WoodstocksMusic

    WoodstocksMusic New Member

    Editorial
    What causes chronic fatigue syndrome?
    Infections, physical inactivity, and enhanced interoception may all play a part


    Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is an illness of unknown nature and cause, but most medical authorities now accept its existence.1-3 Research about its cause has been hampered by the absence of a biological marker, the heterogeneous nature of the illness, and difficulties in differentiating cause from effect.2 3 Yet, some progress has been made, particularly when causes are divided into predisposing, triggering, and maintaining factors.

    Women get chronic fatigue syndrome more commonly than men for unknown reasons, although increasing evidence suggests a genetic influence on the illness.1 3 Premorbid mood disorders are replicated risk markers for chronic fatigue syndrome;1 3 the risks may be inflated by shared symptoms or they may be markers for those patients with comorbid mood disorders.1 3-5 Another replicated premorbid risk marker is increased consulting of a doctor for minor illnesses up to 15 years before diagnosis,w1 w2 suggesting a general vulnerability for either ill health or seeking health care, the latter possibly being mediated by comorbid anxiety.4

    Certain infectious illnesses, such as Epstein-Barr virus, Q fever, and viral meningitis, can trigger chronic fatigue syndrome;w3-w8 common upper respiratory infections do not.w3 w9 Little evidence exists of persistent infection in patients with chronic fatigue syndrome.w10 An immune cause has not been established,6 although preliminary research suggests that immune responses to exercise in these patients may be abnormal.w11 The symptoms of chronic fatigue syndrome are similar to the symptoms and consequent behaviour of people with acute infection.2 w12 A low cortisol level has repeatedly been found to be associated with chronic fatigue syndrome, and recent research suggests this may be secondary to the physical inactivity and sleep disturbance found with long standing chronic fatigue syndrome.7 w13 Illness maintaining factors may include illness beliefs that encourage avoidant coping.w14 w15

    Viner and Hotopf publish in this issue a 30 year cohort study of 16 567 babies born in 1970 (p 941), in which they report childhood predictions of self reported chronic fatigue syndrome and myalgic encephalomyelitis developing in adulthood.8 Their most important findings were that chronic fatigue syndrome was predicted by having a disabling illness in childhood and never or hardly ever doing sport out of school at age 10. Premorbid psychological distress in either the mother or the child did not predict the illness.

    Previous healthcare attendance for ill health does seem to predict corroborated chronic fatigue syndrome.w1 w2 Physical ill health in childhood seems to predispose to medically unexplained ill health in adulthood generally only when the childhood diagnosis is uncertain rather than established.w16 Neither the mother's nor the child's or adolescent's psychological distress predicted chronic fatigue syndrome, a finding that contrasts with most studies of both children and adults developing the illness.w17 w18 Data from Viner and Hotopf's study may be more reliable, having been gathered contemporaneously. We need to learn how certain childhood illnesses predispose people to later chronic fatigue syndrome.

    The novel finding was that 10 year old children who were reported by their mothers to "never or hardly ever" play sport in their spare time had twice the risk of chronic fatigue syndrome in adulthood. In contrast, school sport had no effect; this might be explained by the compulsory nature of some school sport. Although statistically significant being more sedentary was not a strong risk marker, since 84% of those who later developed chronic fatigue syndrome were not sedentary, although relying on self reports of chronic fatigue syndrome might have weakened predictions by including misdiagnoses.

    If the finding was not a chance one, could being sedentary itself predispose people to chronic fatigue syndrome, or is being sedentary a marker for something else? We know that ambulant patients with chronic fatigue syndrome are at least as physically deconditioned as sedentary but healthy people, even though studies have excluded the most physically disabled patients because of the difficulty in measuring their fitness.9 Lack of fitness and inactivity consistently predicted the later development of chronic fatigue syndrome after infectious mononucleosis,5 w19 suggesting that either premorbid or early deconditioning is a risk factor in some patients. Getting fitter is not necessary to feel better after a graded exercise programme,9 so is there another explanation?

    Patients with chronic fatigue syndrome perceive activity as more of an effort than healthy controls and underestimate their cognitive and physical abilities, while being more aware of their internal physiological state, a phenomenon called interoception.1 3 9 10 w2 w15 w20-22 How might this be related to being sedentary or having a disabling illness in childhood? Inactivity increases perception of effort with exercise, through both physiological deconditioning and the related cognitive, emotional, and sleep disturbance from being sedentary.11 w23 w24 This may enhance or sensitise interoception, perhaps in a similar way to that hypothesised in the related disorder of fibromyalgia.w25 The corollary is that this enhanced bodily awareness or interoception may itself cause sedentary behaviour. When an appropriate trigger supervenes in later life, enhanced interoception may predispose some people to chronic fatigue syndrome.5 Trials of prevention are required to test this idea.11 w26 Treatments that "reprogramme" interoception and increased activity, such as graded exercise therapy and cognitive behaviour therapy, seem to help most patients.12

    Peter D White, professor of psychological medicine

    Barts and the London, Queen Mary School of Medicine and Dentistry, St Bartholomew's Hospital, London EC1A 7BE (p.d.white@qmul.ac.uk)
  6. rockgor

    rockgor Well-Known Member

    "I REMEMBER ME" interviewed some of these women. They were glad to see there was some recognition that they had a disease rather than some kind of mass hysteria phenomenon.
  7. matthewson

    matthewson New Member

    I had never heard the word interoception before and I ended up looking it up and learned something new. Even if you don't agree with the article, that is some of the hypothesis that is being thrown around, especially in the UK. As far as I'm concerned, any knowledge is good knowledge. But, that may be the science side coming out in me. Even if you don't agree with it, doesn't knowing where the other side is coming from help that much more?

    What I did learn, and it was fascinating, is that there are people who are way more aware of their bodily functions, including heartbeat than others. And I have found that to be true, especially my dad. He is aware of any little change at all. And then he dwells on it! Did I inherit that trait? Well, I would say to some extent. Not as bad as he is, but it is there. Is that why I have FMS, could be? I don't really care, as long as SOMEONE is doing research into these DD. Is that why behavioral therapy helps some people?

    Look at a lot of the posts on this board. There definately is a majority of empaths here. Could it be that they do feel emotions more than most. And look at all the posts of people worrying about every test result, every new symptom, mercury, toxins, chem trails even! Are we just the type of people that these DD strike?

    And, I am not any different. If you look in my bio, I explain about how I developed FMS. In there I mentioned my bout with thrush. I really should take that out now, as I really don't think I ever had a candida infection, I think I was just looking at my tongue and seeing white and THINKING it was candida. I have the advantage of being able to check on these things with working in a lab, and when I went back to work, I LOOKED at a stained slide of some crud taken off my tongue and guess what! NO YEAST. Your tongue can be white for a number of reasons. I also talked the micro lab into doing a culture and guess what again. NO CANDIDA!

    What I am trying to say in a convoluted way, is that maybe there is a psychological component to these illnesses. I'm not saying that that is all there is though. There is definately something going on physically, but why do most people get mono, amalgam fillings, mycoplasma infections, flu-shots, etc... and DON'T end up with these DD? THATS what I want to know, psychological, genetics, or WHAT.

    Well, I guess I am out of steam now and most of you are probably saying Thank, God! But, I just want you all to think about some of these things and wonder if we have really worried ourselves into these sicknesses.

    Take care, Sally
  8. elsa

    elsa New Member

    Thank you for posting the information. I read through both with interest.

    Mr White is a tad bit dangerous in my thinking .... 1/3rth of the way through I suspected he was from the UK.

    Why dangerous? He opens by saying that CFS is a real physical illness according to a large number of physicians.

    Soon afterwards he starts building his case for the less expensive to the state graded exercise & cognitive behavioral therapy as treatment due to the psychological factors causing CFS.

    I did not like his inference of sedentary lifestyle making CFS a "learned behavior" illness.

    Let me explain my thinking .... The thought that once you get CFS, you are making yourself worse or inable to improve because of the learned sedentary behavior of patients with CFS is in support of the "Wessley School" psychiatry power brokers.


    Also, I had to laugh when the topic of sedentary lifestyle was seriously discussed as a predisposing factor. I honestly thought the man and his cronies would hate to see me coming ..... I would blow their theories clean out of the water.

    My life ='s nothing but movement and physical activity ... including the all important childhood - adolescent years in his studies.

    What would he do with a CFS/FMS patient who was a Jr. Olympic team member involved with all the training that goes along with the position?

    Plus, I didn't slow down once becoming an adult, but continued on to become a professional in my athletic field. Comparatively speaking, I didn't slow down to the degree he is referencing once I became ill.

    I'm certain this group already has ready made responses to individuals like me who are theory busters to their cause .... Probably some other form of psyc disorder. Others who have studied this in more detail can talk more about it then I can.

    I didn't notice the date on the paper. I have often wondered lately with all the research studies flooding the healthcare community about CFS/FMS's physiologic orgin, how the Psychiatrists of the UK are supporting their arguements in favor of "it's real, but all in your head" theory.

    As I understand this particular situation ... CFS/ME UK patients represent a huge Financial and Political Power base ......... You convince the purse string holders of your theory and promise to get them off state support and back to work for little treatment cost and that purse string holder (and all his buddies) are going to LOVE you.

    Just not right.

    The first article concerning mitochondria damage and high dose vitamin C was right on target. I would think the second article individuals would "hang their head in shame" if they were not so power hungry and desirous of controlling the huge CFS/FMS/ME population.

    Very interesting food for thought. Never hurts to exercise my brain from time to time. Thank you for posting and putting up with my reaction turned rant after reading it.

    Take care,

    Elsa



    [This Message was Edited on 04/15/2006]
  9. Paracelsus

    Paracelsus New Member

    ...for adding Dr. Cathcart's ascorbate paper to this thread.

    Dr. Cathcart was a true medical pioneer. He discovered that Vitamin C (ascorbic acid, ascorbate) was a powerful viricide as well as antioxidant par excellence.

    During a polio epidemic in the '50's he used C to stop polio from progressing to paralysis in many of his patients.

    Orthodox medicine turned a blind eye then-- if they had listened to the good doctor many polio victims may have been saved a lifetime of misery.

    Dr. Cathcart advocated massive doses of C to treat many kinds of viral diseases-- hence his treatment of EBV and CFS with ascorbate. EBV in his experience required virtually the highest mass dose of C to control. Thus he surmised that EBV viral toxins are highly toxic to those precious little powerhouses in our cells called mitochondria.

    Mainstream medicine has managed to ignore his life's work with C with aplomb.
    [This Message was Edited on 04/15/2006]
  10. Mikie

    Mikie Moderator

    I feel better when supplementing with vitamin C. I typically only use one tablet in addition to my multi, but when I feel sick, I take it all day long and I feel better. Perhaps I need to increase the dose all the time.

    When I read Dr. St. Amand's book on the Guai treatment, I learned about the Krebs Cycle. It is a very intricate and delicate mitochondrial process with many steps involving chemicals and an electron to transform these chemicals into ATP, which is the fuel of our body's energy. If the antioxidant properties of vitamin C can enhance this process, we should feel better. I supplement with other antioxidants too, but vitamin C is the only one to which I have reacted so positively.

    Thanks for the article.

    Love, Mikie
  11. spacee

    spacee Member

    About 15 years ago, a friend was in touch with someone in the Incline Village Support group. AT THAT TIME....It was 1/3, 1/3, 1/3. One third improved enough to work, one third showed gradual improvement (but not enough to work) and 1/3 got worse.

    That is all I know....Hugs, Spacee
  12. kholmes

    kholmes New Member

    And thanks for the stats, Spacee.

    The Cathcart article was especially interesting to me.
    There's a good book called THE CANARY AND CHRONIC FATIGUE by a Dr. Majid Ali, from about ten years ago, that puts forth a similar theory of CFS: a viral beginning and oxidative stress. I don't remember him going into detail about mitochondrial damage. But like many other physicians, he recommends a healthy dose of antioxidants. I take 200 mg. of COQ10, a good food-based multivitamin, and a teaspoon of vitamin C crystals in water every day.

    Dr. Petrovic in South Africa has actually claimed to "cure" people with CFS using very high doses of antioxidants and vitamins (a claim about which I'm very skeptical), but the theory is a good one.

    A number of physicians have also been suggesting we take D Ribose and L Carnitine to aid in cellular ATP production. I'd be curious to know if anyone has tried this protocol.
    Kholmes
  13. slowdreamer

    slowdreamer New Member

    Do you think we should eat flowers or stick to the traditional mode of vegetables only.
    What would happen if the moon was square I wonder.
    Would anyone else like to talk about turnips.They are easy to grow and good for you. if you eat them immediately they repair much damage in your body.
    Turnips are a closed cirlce which reminds me of something else..nice and certain.
    By sticking up for my beliefs derived from 14 yrs in the cfs culture I find myself mildly ridiculed...
    I lie on my bed because I am too weak to overcome my negative attitudes. This is what they are saying folks.
    I know of a child who ended up in a wheelchair because he was forced to exercise in accordanc e with White's Philosophy.I am unable to have an intellectual discussion about abuse.
    Sorry Matthewson I have a Comparitive Literature degree so can't accept your criticism.
    Plead guilty to a messed up brain after 14 yrs of frustration and i wont bore you with the details but I find it highly offensive that you are suggesting that we are sick because we are overly observant and concerned about our bodies..I think the other word is hypochondria...If you are going to say that what hope is there...everone who is ill and trying to recover begins to study their bodies...the acute observers with discipine are perhaps the ones who recover but by giving away our power to these medical experts well we are all up the proverbial.
    This is just one of my many humble opinions expressed in rage because I wonder what sort of support group this is..Only if i am a nice girl apparently no strong opinions
    Well people get told their illness is in their heads, they sink into depression and some suicide..Ask any support group convenor.
    I do not apologize for my passion although my upset causes this to be a rather raw and unsubtle rave.Bring in the blessed Jokers.If they knock me off here no worries, just Good luck all and remember THE DESIDERATA
    tHINK WILL GO AND LISTEN TO MY GOOD MATE GARRISON KEILOR
    [This Message was Edited on 04/16/2006]
    [This Message was Edited on 04/16/2006]
  14. WoodstocksMusic

    WoodstocksMusic New Member

    I too feel best when I am getting sleep (Ambien worked for about 4 years but finally when I reached 15mg per night I switched to 3 mg of Lunesta and that worked) I even got better to the point that I came off all sleep and prescription meds for 13 months but just went back onto lunesta because my insomnia was back in full force.

    My point was I feel best when getting sleep and taking a multivitamin extra magnesium and 1000mg vitamin C.

    I have tried every thing and after 5 years of searching (Neurontin, Hydrocodone, Ambien, Prozac, Lunesta....many others my fuddled brain can not recall at the moment) but the best my body felt was simply using a sleep med and taking multi-vitamin and magnesium and vit C...

    So I come to the conclusion that for me I need sleep, exercise, extra vitamins and pain meds as needed to keep me moving....as the exercise (house cleaning counts as exercise in my book!) increases the pain meds slowly decreased and the sleep got better to the point I was able to come off prescription meds alltogether!

    Different things work for different folks!