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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. Dster


    Thanks Peggy-Sue, your post is extremely good news for me. I have been diagnosed with CFS/ME, but from what I know about myself and from what you have just posted, I am now convinced that I have CFS and not ME. I will be looking into using the Lightning Process hopefully next month and will update the site as to how I get on. Thanks again
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I would say that if she had what most of us understand as ME, for which there is strong and growing evidence of it being an autoimmune disease/diseases with physical causes, it is very unlikely that a psychological treatment could cure it. But as others have said, diagnosing ME is not even a hit-and-miss process, as there is no definitive test, so doctors don't know what they should be hitting, only some of the things they should be ruling out, and even that is done inconsistently.

    I don't think anyone can truthfully and accurately say that their illness is definitely ME, although some of us do as a kind of shorthand. We don't really know what it is, and we don't really know how to diagnose it. But most of us are as sure as we possibly can be that it is physical and not psychiatric and that treatment needs to be physical too. Many of us are finding that physical treatments help (and I don't mean exercise - I mean things like diet, supplements and pacing), and there is a fair amount of evidence to back it up.
    aimossy, Valentijn and rosie26 like this.
  3. peggy-sue


    Dster - do you get PEM?
    That's the bit where you get very ill, with all symptoms flaring, a day or so after you're overdone things?
    MeSci likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    has the lightening process cure some other immune/infectious disease.
    Theres no absolute test for ME, the canadaian consensus criteria is probably the best but misses alot of subset and no physiological tests etc too, but they are looking at adding more diagnostic biomarkers like nk functions etc to confirm the diagnosis. Im just saying that i would be very ify on diagnosis unless some type of immune dysfunction in testing was found. I know this sort of testing is hard to get but t cell testing is available and a dysfunctional test is consistent with cfs/me. SOme also have neutropenia occur in many of their full blood counts. Spontaneous recoveries do happen. Im sorry but after looking into the lightening process a few years ago i just dont believe in it. There has been alot more people from here who havent gotten anything from it compared to those that have been cured by the lightening process. its not that we dont believe you but we question the diagnosis if someone can be cured by the LP.
    taniaaust1, MeSci and Valentijn like this.
  5. ukxmrv

    ukxmrv Senior Member

    I'd love to look at the before and after tests for anyone cured by any method - and I'm not singling out the Lightning Process here. Applies just as well to drugs or other regimes.

    Please share with us the test results that your friend had before the LP so we can all get a clear picture of her recovery.

    I'd also like to know which doctor diagnosed her with ME as in the London area I'm often asked which doctors we have left who can make a ME diagnosis (as per Ramsay) so I can add them to my list.

    A patient with a firm ME diagnosis and lots of test results to share with us would be of great interest.
    taniaaust1 and MeSci like this.
  6. Valentijn

    Valentijn Senior Member

    That is one possiblity - based on the research it is very clear that ME is not psychological, hence there's no rational way for LP or other psychological therapies to cure it. There is also plenty of research showing that these approaches don't work with ME.

    The other possiblity is that she has ME but is in denial. Many psych therapies for ME, especially LP, focus on denying symptoms and/or attributing them to something other than ME, such as catching a cold or being older. This can be compounded by investing a lot of money in a treatment. Even once someone has realized they are still sick, they might be too embarassed to admit they were wrong when they said they were cured.

    It's really just a cleverly marketed form of brain-washing.
    beaker, SOC, peggy-sue and 3 others like this.
  7. Ian

    Ian Senior Member

    I have a family friend who has a spinal condition. He has no feeling in his legs, and often can't move them at all. He was told by doctors it was all in his head, and then fobbed off to the psych crazies. These people are just hopelessly insane.
    taniaaust1, Valentijn and ukxmrv like this.
  8. xks201

    xks201 Senior Member

    I don't personally understands what differentiates a M.E. diagnosis from any other form of fatigue that has been long lasting. I don't understand how people say that someone didn't have ME if they got cured...what do you consider ME? To me it is basically like saying the disease has no cause and is incurable so it is called M.E.. But that's clearly not the case as some people have been cured of chronic fatigue.
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    One thing that differentiates ME from other forms of long lasting fatigue is the long recovery time from exertion. A person with ME feels as bad or worse the day after exertion. Recovery takes from 48 hours to I don't know how long.

    'Fatigue' is probably a poor descriptor for ME. People with ME do not necessarily feel fatigued all of the time (if they are pacing adequately so that they are not in a push/crash cycle).
    taniaaust1 and MeSci like this.
  10. ukxmrv

    ukxmrv Senior Member

    xks201, Dr Ramsay described ME as a characteristically chronic relapsing course, so if a patient has never had a ME diagnosis from an expert does recover it's only logical to ask if they ever had the disease. Dr Ramsay did say that some of his patients recovered and some went into remission so you won't get any argument from me over that part of people's claims.

    He also went on to talk about his patients who did recover and spoke about those who were able to rest getting the best prognosis. So once again I add this to my plausibility test when someone says that they are cured.

    Dr Ramsay said that it was the reaction to a trivial small amount of exercise that his ME patients had that made them different and the extended symptoms and recovery.

    His ME diagnosis was based on a series of things all adding up for what he looked for when diagnosing patients. He was looking for fluctuating symptoms as well and not always TATT as an example.

    We are years after Dr Ramsay's death now with drugs not around at his time so when people who claim that a new thing has cured their symptoms then I listen to them. However I still apply my plausibility tests(s) and ask questions.
    MeSci and heapsreal like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Fatigue maybe just one symptom of me were chronic fatigue is usually just fatigue. ME I think feels sick with headaches muscle aches, cognitive memory recall issues etc. When a diagnostic marker or markers are found and used then it will be easier to distinguish me from other fatigue illnesses. Fatigue is just a symptom shared by many conditions. Pem though is suppose to be alot less common with other illnesses.
    beaker, MeSci, aimossy and 1 other person like this.
  12. xks201

    xks201 Senior Member

    Well Dr. Ramsey's definition seems somewhat of an oxymoron, don't you think? If ME by definition is a disease that is chronically relapsing, then I suppose by definition it is an incurable disease. But that definition is no definition of a disease. That is an extremely broad definition, which I'm afraid has come to throw the wool over practicioner's eyes when it comes to the ostensible hopelessness that this disease provides.

    I'm about to post a thread here on some of my latest findings. As you know I am constantly struggling with identifying the major components of this disease process, so don't take my word as bible - I am simply offering some ideas.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Apart of Ramseys diagnosis was that it was a post infectious illness, so the onset was from some type of viral infection, just this in itself can rule out many cases of just chronic fatigue(although not 100%). Autopsies done at the time of ME patients found abnormalities in the nervous sytem particularly the dorsal root ganglion which i assume can only be shown in autopsies, so the ME definition was to be used by a doctor with a lot of experience with ME. One has to remember this was a time of reduce diagnostic testing and today its still not fabulous for certain illnesses. ME was once a specific illness but it has been muddied down by the outbreaks in the 1980s that they called cfs by the authorities as well as psychobabblers trying to broaden definitions so they could accept patients that ME wasnt intended for. Also this was to help turn ME and cfs into a psychological illness.

    ME is actually inflammation of the muscles , brain and spinal cord which was found in the earlier autopsies and fatigue was just one of the symptoms just like fatigue is a symptom of MS, lupus even heart disease. Chronic fatigue is chronic fatigue with no indications of inflammation of the muscles, brain and spinal cord. If one gets down to the nitty gritty, thats what its about. The lack of research which has been hindered by psychobabblers over the years is why there probably isnt better diagnostic tests and why ME has been lumped together with many different conditions with fatigue as a symptom.
    Wildcat, rosie26, MeSci and 1 other person like this.
  14. Erik Johnson

    Erik Johnson Senior Member

    Station: Cable News Network (CNN)
    Date: Oktober 24, 1999
    Programme: CNN & Time

    ANNOUNCER: CNN & TIME. Tonight, "Sick and Tired." It's been called the yuppie
    flu, but it's been anything but a passing fad. It is a major public outcry.
    We all have days when it feels like we just can't roll out of bed. We're
    tired, listless, completely drained. But imagine feeling that way and worse
    day in and day out for weeks, months, and even years.
    JEFF GREENFIELD, HOST: We're talking about chronic fatigue syndrome, the
    mysterious, debilitating illness that first showed up in the mid-1980s. And if
    you thought that this yuppie flu was the invention of hypochondriacs or had
    gone the way of Duran Duran or somehow had been cured, consider this. In the
    United States alone right now, hundreds of thousands of people may be
    struggling with CFS.
    Here's Daryn Kagan.
    DARYN KAGAN, CNN CORRESPONDENT (voice-over): As the 1999 Women's World Cup
    came down to the wire in penalty kicks, another drama was taking place behind
    the scenes.
    MICHELLE AKERS, U.S. WOMEN'S SOCCER TEAM: I'm graying out, and I can't hear,
    and my body's just clenched.
    SPORTS ANNOUNCER: Look at Akers. She leads by example.
    KAGAN: Michelle Akers played 90 minutes in blistering heat, until her body
    gave out.
    SPORTS ANNOUNCER: All eyes are on Michelle Akers.
    AKERS: So they put me on the table and then started trying to get the IVs in.
    KAGAN: Akers' doctors, coaches, and teammates know her symptoms are real, but
    some people think the disease she's recovering from, chronic fatigue syndrome,
    is not.
    (on camera): When you say worst, what does worst feel like for people who
    don't know what that feels like?
    AKERS: It's like just feeling totally empty on the inside. It's like --
    there's no reserve, no energy. It's like a black hole in the very depths of
    your soul.
    (voice-over): For years, CFS has been dismissed by many in the general public,
    the medical profession, even experts at the Federal Centers for Disease
    Control and Prevention. Fifteen years ago, a mysterious illness swept through
    the Alpine resorts and towns near Lake Tahoe. Incline Village, Nevada, was
    ground zero.
    DR. DAN PETERSON, PHYSICIAN: The first ones were isolated cases. A marathon
    runner in town who couldn't run any longer.
    KAGAN: Dr. Dan Peterson is a local physician. He saw the first cases.
    PETERSON: Then we started seeing the clustering with the girls' high school
    basketball team where the entire team became ill -- extremely ill.
    KAGAN: At Tahoe-Truckee High School, dozens of students came down with
    symptoms resembling mononucleosis. So did a third of the teachers.
    JERRY KENNEDY: You're not tired. You're -- it's like the blood's drained out
    of you.
    KAGAN: Like Jerry Kennedy who taught auto mechanics and drafting and his wife
    Janice (ph) who taught English.
    JANICE KENNEDY, FORMER HIGH SCHOOL TEACHER: It's like having bricks piled on
    you. It's as though you're fighting to move at all.
    JERRY KENNEDY: It's the worst feeling I've ever had in my life. I can't
    compare it to anything else that's ever happened to me.
    KAGAN: The number of cases multiplied during the summer of 1985.
    PETERSON: That's when I first thought, well, there's some new contagious
    disease, you know, I mean, there's something in the water, some Typhoid Mary
    had come into the school system and affected the kids and the teachers.
    KAGAN: Besides fatigue, most patients developed a bizarre mental fogginess.
    JERRY KENNEDY: You feel dumb because you can't remember things. You forget
    people's -- you don't even comprehend the names. You lose it.
    JANICE KENNEDY: As an English teacher, I remember one horrible moment when I
    asked myself, "What is a subordinate clause?" I could not remember what a
    subordinate clause was.
    KAGAN: Eventually, more than 250 people living around Lake Tahoe seemed to
    have the illness. For months, Dr. Peterson couldn't persuade anyone to
    investigate. Finally, the CDC agreed to send a two-man team.
    JANICE KENNEDY: They didn't seem to feel that there was an epidemic, and we
    knew there was. It might have been small, but it definitely existed.
    DR. WILLIAM REEVES, CDC EPIDEMIOLOGIST: CDC's study at that time failed to
    identify any evidence that there was an unusual occurrence of a chronically
    fatiguing illness.
    KAGAN: Dr. William Reeves is the CDC epidemiologist now in charge of
    investigating chronic fatigue syndrome. He didn't go to Incline Village, but
    he defends the team that did. He also defends their findings, which are still
    controversial today. REEVES: Using epidemiologic public expertise of the time,
    there was no evidence, clear-cut, replicable evidence that anything unusual is
    happening in that population.
    PETERSON: As I just said right now, I'm right about this. I know that these
    people were well, and now they're sick, and they're staying sick. So I have to
    hang in there and be diligent about it, regardless of what the rest of rest of
    the world thinks.
    KAGAN: Over the years, chronic fatigue syndrome has been thought of as a
    trendy illness, the yuppie flu. Sufferers say the official name the CDC gave
    it didn't help.
    JANICE KENNEDY: Ever since they started calling it chronic fatigue syndrome, I
    think every person who has had it, every family member of someone who has it,
    every doctor who is familiar with it hates that name because it seems to
    KAGAN: A diagnostic test for CFS has yet to be developed, but the CDC did come
    up with a definition: debilitating fatigue lasting at least six months, along
    with four of eight other symptoms. They include sore throat, muscle and joint
    pain, short-term memory loss, and an inability to recover from exertion. New
    cases have continued to crop up all over the country. Michelle Akers first
    noticed her symptoms in 1991.
    AKERS: I would go into the shower after training and just cry and cry and cry.
    It was the only place I could go to where no one would see me and just say, "I
    can't do this. I can't do it."
    KAGAN: Akers sidelined herself for almost an entire season in order to
    recover, but when she came back to soccer, she suffered constant relapses.
    Still, she kept the illness secret from her teammates, friends, even her
    family. Finally, in 1996, Akers went public. She wrote an emotional letter to
    Congress describing a day in the life of a typical sufferer.
    AKERS: That was the first time I admitted publicly even to my folks how bad I
    was actually feeling, and I read it to my dad over the phone. I remember my
    dad was just stunned.
    KAGAN: And so were some members of Congress who voted to give millions of
    dollars to the CDC to solve the mystery of chronic fatigue. But less than half
    actually went directly to CFS research. That led to another mystery. What
    happened to the money?
    (on camera): This year, federal investigators found out. The CDC diverted
    between $9 and $13 million dollars, money that Congress had specifically set
    aside to study CFS. Instead, it was spent on other diseases, like polio and
    (voice-over): It was Dr. William Reeves, the head of the government CFS lab
    who helped bring the diversion to light. He says he did so after a superior
    asked him to lie about how much money was going to CFS research.
    REEVES: I felt that the best thing to do was just to report this to Congress,
    and that's when I formally blew the whistle.
    KAGAN: But not before CDC officials gave inaccurate and misleading information
    to Congress about how the money was spent. But why was the money taken from
    CFS in the first place?
    REEVES: It was taken from chronic fatigue syndrome because it was not
    perceived by the people doing it as important as the other ones, not perceived
    as an infectious disease.
    KAGAN: The CDC's current director, Dr. Jeffrey Koplan, says all the missing
    money will be restored over the next four years, and while nobody was fired,
    the division overseeing CFS has been put on probationary status.
    DR. JEFFREY KOPLAN, CDC DIRECTOR: CDC, in regard to chronic fatigue syndrome,
    misspent funds allocated to us for chronic fatigue syndrome, and for that, we
    sincerely apologize to all parties involved and in particular the people and
    their families that suffer from chronic fatigue syndrome.
    REEVES: We were set back. There is no question about that. We were set back
    substantially. Programs suffered because of this. This has probably set us
    back three to five years.
    JERRY KENNEDY: I'm not surprised that the money went someplace else. Somebody
    had the power to move it some other place, some pet project they had, and they
    did it.
    KAGAN: Perhaps the government's premier laboratory didn't make CFS a priority,
    but other researchers have. Dr. Dedra Buchwald, a Harvard-trained physician,
    arrived in Incline Village after the CDC left, and she's been studying CFS
    ever since. She believes she's on the verge of a breakthrough. She's designed
    a unique study using identical twins. She compares sick twins to their healthy
    counterparts, trying to detect differences caused by CFS.
    DR. DEDRA BUCHWALD, CFS RESEARCHER: So they'll put the electrodes on your
    head, and then what they do is -- they'll monitor your brain waves.
    KAGAN: Mary Nelson (ph) and Martha Williams (ph) are the 21st pair of twins to
    take part in Buchwald's study. Martha was an Arkansas state trooper for 20
    years, until a series of worsening symptoms forced her into early retirement.
    I was hurting. It was either the leather gear or the bulletproof vest. The
    boots. Getting in and out of the car. The headaches was from my hat. Or my
    eyes hurt because the sun...
    KAGAN: Mary is a construction worker in Missouri. She's still on the job.
    MARY NELSON, CONSTRUCTION WORKER: Oh, yes. Yes. Anything they've got that
    comes in by delivery, if I'm -- I happen to be at the warehouse, I'm unloading
    it. KAGAN: Researchers aren't supposed to know which twin is sick, but it's
    pretty obvious. Martha's symptoms - fatigue, muscle pain, difficulty thinking
    and sleeping -- are familiar indicators of CFS.
    WILLIAMS: Your legs hurt. It feels like you're walking on needles. In the
    night while you're trying to sleep, you wake up, and it's hard to describe to
    someone, but it's like your arms and your legs are asleep, or they're numb but
    they hurt.
    CFS RESEARCHER: Here we go. Just stare at that thing, and if you have to
    blink, blink all at once, get it over with.
    KAGAN: For an entire week, the twins were put through a battery of tests,
    tests to measure exercise tolerance, memory and thought processing, sleep
    disturbances, and blood hormone levels.
    BUCHWALD: What we thought was that there would very substantial differences
    between the healthy twin and the sick twin.
    KAGAN: But there wasn't. Both twins performed low on many of the tests.
    Buchwald believes it's because both twins have a genetic predisposition to
    BUCHWALD: Right now, our thinking is just that there is a group of people that
    are vulnerable or that are likely to be vulnerable to get CFS.
    KAGAN: Buchwald's study presents a new option, that hereditary plays a major
    role in chronic fatigue.
    BUCHWALD: Most people who have that predisposition will never get chronic
    fatigue syndrome, but for an unfortunate few, they will be exposed to some
    series of triggers or trigger, which could be anything from an infectious
    illness to an episode of depression or a motor- vehicle accident, that will
    trigger this chronic fatigue syndrome.
    KAGAN: Meanwhile, the Centers for Disease Control is still trying to catch up.
    KOPLAN: We're looking at what we have now, what resources we have in terms of
    people and laboratory techniques, what studies need to be done, who else we
    need to involve from outside in giving us more information. So we're trying to
    set a forward course in saying how can we make a difference with this disease.
    KAGAN: They're starting with a new national head count. As recently as two
    years ago, the CDC believed only 10,000 Americans had the illness. Now the CDC
    says, based on a study in Wichita, Kansas, that number is actually 40 times
    higher. Today, the CDC estimates 400,000 Americans over age 18 have active
    REEVES: This is a major public health problem, and as I said, in Wichita at
    least, this is about a quarter the number of people that have -- women that
    have breast cancer, and it's about four times more than the number of women
    that have cervical cancer.
    KAGAN: But 15 years after the outbreak of CFS in Incline Village, Nevada, the
    man who first identified the illness expected to be further along.
    PETERSON: I mean, the CDC is still counting heads, still saying this disease
    exists, and here are the numbers. Well, we -- I never expected to be here
    still quandering (ph) this problem 15 years later. I really didn't.
    KAGAN: Recently, Peterson did his own follow-up of 180 of his original
    PETERSON: About 30 percent of them are still severely disabled. The remainder
    have had substantial or at least partial improvements.
    KAGAN: And how many are completely recovered?
    PETERSON: None.
    GracieJ and peggy-sue like this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    You made me think then - what does 'chronic' mean? Does it necessarily mean incurable?

    This definition seems to say not necessarily:

  16. peggy-sue


    I have issues with the use of "relapsing" - that implies there are times of normal functioning.
    10 years in, I'm still waiting for anything approaching normal functioning, even for a couple of hours.
    rosie26 likes this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    relapsing and remmitting should have a meaning at the bottom of the definition saying that the depth of shit we are in varies from either day to day or month to month etc so we are always in the shit but the depth varies.;)
  18. Erik Johnson

    Erik Johnson Senior Member

    "The crucial differentiation between ME and other forms of postiviral fatigue syndrome lies in the striking variability of the symptoms not only in the couirse 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)
    ukxmrv likes this.
  19. xks201

    xks201 Senior Member

    Chronic describes a condition and has nothing to do with whether or not it is incurable. Chronic simply means whatever disease has been happening has been happening for a long time consistently in comparison to acute which is more of a mild and recent or sporadic appearance of disease symptoms. Definitions are everything......
  20. xks201

    xks201 Senior Member

    If only all cases of chronic fatigue/ME were of viral nature. I don't think anyone has proven that. lol Therefore that cannot be the definition. One doctor showed that a bacterial infection could reproduce CFS in all of his employees and it was reversed upon intensive antibiotic therapy.

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