Dangers of Fad Treatments

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Aug 29, 2006.

  1. karinaxx

    karinaxx New Member

    i know there has been so much written on this topic, but i just want to post that one here, because i think it is so well written and all the new members on board maybe have not heard of this organsiation, which is trying so hard to stop the injustice done to ME/cfids sufferers.
    http://www.meactionuk.org.uk

    Dangers of Fad Treatments
    by Del Kennedy
    It is all too common to hear stories of desperate sufferers trying anything, no matter how bizarre or unlikely, in search of something that will make their lives bearable. And there are all too many practitioners ready to peddle nonsense if it makes them a good living.

    At best, these 'treatments' do nothing at all. At worst, they can do a great deal of harm. I'm sure you will have recognised by now what I'm talking about : 'physicians' pushing quack 'therapies' like Graded Excercise and Cognitive Behaviour Therapy.

    Just take a look at the kind of hocus-pocus that these people are selling :


    " In order to understand CFS we need to take a multi-factorial approach known as the biopsychosocial model...."
    "...perhaps you go out even less because your self-esteem is low or you do not see your friends so much because you have nothing to talk about."


    (A Closer Look At Cognitive Behaviour Therapy,
    by Stephanie C. Jones, October 1999)
    There are several words for this, and the politest one is twaddle. In order to interact with others, one has to be capable of focussing one's mind on their words, expressions and body-language. Most of the time, it is nigh on impossible for an M.E. sufferer to bring his or her mind into focus at all. Consciousness remains somewhere between sleep and wakefulness. When it is possible to focus attention, it is very limited both in scope and in duration. At the best of times, it may be possible to think about one subject, but to switch attention between different things is impossibly confusing, and leads to rapid brain-fag.

    The sort of thought sufferers might manage is linear, erratic in speed, and short-lived. The sort of attention you need in social contexts is very different: you have to respond instantly to prompts from several sources or on several subjects while filtering out all the irrelevant stimuli from the environment. This is exactly what ME sufferers are worst at. If they can manage it at all, it's for half an hour before the fog rolls in again.

    Unable to take the social stage and play their part in the world, ME sufferers face the virtual destruction of their social identities. This is a tormenting handicap in many people's lives, not something to be made light of. But Ms Jones treats ME in these terms :


    For example; if you are lying in bed at night and hear the sound of broken glass outside the back door you may think 'someone is trying to break in the back door'. This thought may make your heart beat faster, your palms sweat, you might hold your breath and feel fearful.
    However, if the automatic thought is "Oh, silly cat, it's jumped on the milk bottles again" your body will not undergo the same physiological changes it did when you thought it was a burglar.

    Once you have identified a negative automatic thought, the next step is to challenge it. This can be done by asking yourself one of a number of questions specifically in relation to that thought. For example. you may think 'Life is going to go on forever like this', so you need to ask yourself 'What evidence do I have that this will happen?'


    Well, for a start, there's the fact that we are reading stuff like this - and secondly, there's the fact of where we are reading it; the article from which this excerpt is taken was published in issue 31 of 'Interaction', the journal of 'Action for ME and Chronic Fatigue' (October 1999). If we have to read stuff like this in the journal of what was originally an activist group, then clearly this nightmare could go on forever.
    Diplomacy and Public Relations are one matter: getting this far off message is quite another. CBT does not need to be promoted to ME sufferers by AfME; it is marketed far more than enough by mainstream medics, usually in combination with 'graded excercise'. Then there's the fact that:


    "mistreatment of ME sufferers can lead to deterioration and even paralysis".

    "Facts and Figures on ME", AfME, 1993/4.
    If you're an ME sufferer or a carer, then you will know just how serious this life-wrecking disease is - and how grave are the issues that it has raised concerning the practice of medicine in our society. If you're not, then read Melvin Ramsay's description of the disease on this website - or just read this:


    "20% of sufferers are permanently disabled and wheelchair or bed bound. 60% never regain full health.

    "Facts and Figures on ME", AfME, 1993/4.

    It is difficult to see how an article that purports to address the treatment or management of such a disease in terms of telling its victims to think: "Oh, silly cat, it's jumped on the milk bottles again" could be interpreted in inoffensive terms. As Ann Crocker wrote in her letter published in the following issue of Interaction:

    "To impy that the physical illness ME can be successfully treated by 'challenging negative thoughts' is an insult to people like my daughter who have been severely affected by the illness for many years and yet still retain a positive and realistic attitude. My daughter's condition deteriorated to an alarming degree after following a CBT & graded excercise approach."

    Personally, I find it very hard to understand why 'Action for ME and Chronic Fatigue' are prepared to even risk insulting ME sufferers and demoralising their carers in this way. They didn't start out like this. The ME Action Campaign was the first ME activist group in the world, and Claire Francis inspired us all with the strength and courage of her address in Issue 1 of Interaction (Winter 1988). Here are some excerpts from that landmark publication :


    "... most likely, you will end up with the one speciality which, though wrapped up in pseudo-scientific jargon, requires no scientific proof whatsoever to 'prove' its cause. It is the dustbin of modern medicine. It is, of course, psychiatry... Here are people with the power to decide that a child with M.E. "doesn't want to get well" or "is overly-dependent on his mother and is trying to maintain her affection by staying ill". The Orwellian overtones of these sorts of pronouncements takes one's breath away."
    "Underlying this willingness of some members of the medical profession to dump you in the psychiatric dustbin is something very sinister. It is the belief that any illness with the slightest "mental" symptoms must be psychiatric in origin."

    "If ever there was a case of the egg being put before the chicken, this is it."

    ..............

    "At the moment there is a polite but ruthless battle raging between the believers in M.E. as an organic disease (virologists and immunologists) and the psychiatrists."

    ..............

    "No campaign was ever easy, and ours is no exception. We face a long uphill struggle against ignorance and inertia. For most sufferers this struggle is utterly bewildering. How can it be so hard for such an obviously devastating illness to gain recognition? Why are we openly disbelieved?"

    "To be disbelieved is bad enough, to be misdiagnosed as neurotic is worse, but to find ourselves virtual outcasts, denied benefits, sick leave and support can be totally devastating."

    .............

    "It took ten years for the world to take Aids seriously. Our cross - the stigma of mental illness - is just as great a cross to bear, but we too will break through. And here at the Campaign we intend to make sure it takes a great deal less than ten years to get action and recognition for M.E."

    ..............

    "I am proud to stand - or should I say, flop - beside you all on the barricades."



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    Whatever happenned to that spirit ?

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  2. TeaBisqit

    TeaBisqit Member

    I tried a "fad" kind of treatment about nine months ago. It was different salts. Supposed to have special vitamins, minerals and properties because many of the salts come from strange parts of the world. I tried this Pink Himalayan salt. I cannot tell you how sick it made me. And I only had like a quarter teaspoon for maybe two to three days. The pain in my body was unbearable, like I had some kind of metal poisoning, which I might have because it's high in copper, among other things, many of which are poisonous and radioactive. It even has arsenic in it. I didn't know the ingredients until after I took it and my friends made me look them up because I was that ill from it. We were all shocked at what was in there. The pain lasted one to two weeks. And I was very lucky it got out of my system. But I had taken it in desperation. It was a last attempt to try anything to rid myself of this illness. No one understands that in my life. They don't get that I would do anything it took to get this out of my body, including poisoning myself with that stuff if it had meant it would have killed the disease. We do get desperate. You just get to a point where you have to try. And unfortunately, it never works, and you only make yourself sicker and if you're lucky you don't die from whatever you tried. People with our illness need other options. We need real treatments that do work.
  3. Mikie

    Mikie Moderator

    That said, however, it can be very helpful in reducing our anxiety and fears. Early on in my grief therapy after diagnosis, I read an article on CBT. I realized I had been catastrophizing. I would let every little fear build in my mind to an anxiety attack. CBT helped me greatly to identify the beginning of such thinking patterns and to stop them right away.

    Even though this helped, I did continue to have anxiety and panic attacks. They were physical in nature and it took Klonopin to stop them. Still, without the CBT, I would likely have continued to have anxiety despite the Klonopin. Also, it helped to rule out cognitive behavior as the only cause of my anxiety.

    Thanks for the article. As more and more research provides physical evidence for our illnesses, I think people will stop trying to pursuade others that our illnesses are all in our heads.

    Love, Mikie
  4. rockgor

    rockgor Well-Known Member

    But it's for depression, not CFS or FM.

    However, more than half of CFS patients develope major depression during the course of the illness.* Those people may find cognitive therapy helpful.





    *Encounters w/ the Invisible, Nancy Klimas, M.D.
  5. morningsonshine

    morningsonshine New Member

    The one time i tried a theripist, I had to drive 50 miles to town, climb two flights of steps to get there, which was causing major "panic attacks" .

    At the time i was so weak and depleted and just wanting someone to listen and take me real.

    Wanted mostly to dig into my past, not how this illness was effecting my life, and how to deal with it.

    And finally when i brought up my illness, asked me,

    "What are you getting out of this illness?"

    WHAT??!!! A bill from you!!
    Once again patient must some how be at fault!
    I'll stick with my bible and prayer thank you.