Royal School of Medicine CFS Conference tapes now available

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Jun 30, 2008.

  1. Bluebottle

    Bluebottle New Member

    The tapes to the London Royal School of Medicine's Conference on CFS, that only presented the erroneous viewpoint that it is a psychological disorder (it has been classified as a neurological illness by the World health Organisation since 1969) are available here:

    http://meagenda.wordpress.com/

    You will have to register to view them - this takes seconds. The tapes are available because of campaigning individuals with M.E.

    So far I have only watched Simon Wessely's lecture. He states that all CFS patients have been proved to have a pre-existing psychological disorder prior to becoming ill.He does not say where his proof is, but his definition of CFS is certainly not the WHO one.

    He states that he has no sympathy with the campaign to 'push the psychs out of M.E.' Well, he wouldn't have - he's made a huge amount of money from pretending it is a psychological disorder.

    He completely ignores all the careful research that conclusively proves M.E./CFS to be a physical illness.

    A second RSM CFS conference that promotes only the ridiculous viewpoint that it is a psychological disorder, and ignores all the research, is planned for Bristol, UK, in September.
  2. simonedb

    simonedb Member

    I don't even want to look at it, makes me too mad

    do you think it effects many primary care docs opinions in u.s.?
    I know sarnow's book wasnt helpful for me after one of my docs read that........
  3. Bluebottle

    Bluebottle New Member

    I think you people in the US have to be careful that the British psychs, who save the government and insurance companies a fortune over here, do not influence the thinking on CFS in your country. They are immensely powerful.

    Simon Wessely works for the military in both countries , denying the existence of Gulf War Syndrome.
  4. becc

    becc New Member

    I don't have the stomach to watch them either.

    I'm rather confused about what Wessely is saying - do I not have 'CFS' or did I have an unknown, pre-existing mental illness as a very young child? When I first became ill (beginning at around age 12, diagnosed at 14), I was sent to both a psychologist and psychiatrist. Both failed to diagnose any mental illness in me - I was just very sick.

    Could you explain my illness to me, Mr Wessely?

    Or are you finally admitting that what you call 'CFS' bears absolutely no resemblance to ME or CFIDS? Because time and time again, research all over the world has shown no significantly greater prevalence of mental illness in those who suffer these illnesses than any other group of people. Must one now be diagnosed with a mental illness before a diagnosis of 'CFS' can be made?

    I'm worried about the situation in Australia at the moment - many of our ME specialists are retiring and most others will soon be reaching retirement age. There don't appear to be any taking over. We have to make sure Wessely & Co. don't get any footing in this country.
  5. mezombie

    mezombie Member

    Posted by Tom Kindlon on Co-Cure:

    At the RSM conference on CFS in April 2008...Professor Peter Denton White (PDW) (amongst other things), puts forward the argument that the less symptoms a CFS definition has the better, when criticising the CDC 1994 and Canadian definitions.

    Given that PDW has been on other committees regarding preparing and revising the CFS definition, (for example the CDC panel and the Brighton Collaboration), this might not have been the first time he has made this point. Other people may also be making a similar point. So I think it is worthy of highlighting (and challenging).

    To back up the claim, a graph is shown from a study by Prof. Simon Wessely (SW) with the number of CDC symptoms (0-9, chronic fatigue is presumably being counted) on the X-axis, and the score on the Clinical Interview Schedule (CIS) on the Y-axis.

    When highlighting the graph, PDW informs us the audience:
    "you notice a fairly straight line showing the more physical symptoms you have, the more likely you are to meet the criteria for psychiatric distress and psychiatric illness. The cut-off for the CIS for psychiatric morbidity
    is about 12. So once you get above 4 symptoms you can see once you get 5, 6, 7, 8 <emphasis> symptoms as the Canadian criteria suggest, you are more likely to find somebody with a psychiatric disorder and not CFS/ME.
    So I would suggest you do not use the Canadian criteria."

    What the audience is not told is that the CIS-R [R stands for revised - a revised version was designed in 1990 (by Pelosi, a colleague of SW) and given the CDC criteria were published in 1994 it was the version used] measures some of the symptoms of CFS!

    One can score 4 from each symptom.

    So it is not surprising that the more CFS symptoms a patient has (the graph starts at 0 symptoms i.e. includes patients who don't satisfy the CDC criteria or indeed don't even have fatigue), the higher the CIS-R score! Also it wouldn't be that unusual to find a correlation between the number of symptoms a person has, and their score on a question like "Worry about Physical Health" (and probably a few of the other symptoms e.g. irritability).

    So claims like the following: "So once you get above 4 symptoms you can see once you get 5, 6, 7, 8 symptoms as the Canadian criteria suggest, you are more likely to find
    somebody with a psychiatric disorder and not CFS/ME." seem very questionable based in the data presented.

    I'm appending details of the CIS-R questionnaire below.


    Tom Kindlon

    --------------------------------

    http://www.statistics.gov.uk/downloads/theme_health/PMA-AdultFollowup.pdf

    Common mental disorders in the week preceding interview were assessed using the revised version of the Clinical Interview Schedule (CIS-R) (Lewis et al, 1992). The CIS-R can provide data on the prevalence of 14 symptoms, six ICD-10 disorders (depressive episode, phobias, generalised anxiety, panic disorder, obsessive compulsive disorder,
    mixed anxiety and depression), and the distribution of total CIS-R scores, which give an indication of severity of symptoms.

    The CIS-R comprises 14 sections, each covering a particular area of symptoms as follows:

    . Somatic symptoms.
    . Fatigue.
    . Concentration and forgetfulness.
    . Sleep problems.
    . Irritability.
    . Worry about physical health.
    . Depression.
    . Depressive ideas.
    . Worry.
    . Anxiety.
    . Phobias.
    . Panic.
    . Compulsions.
    . Obsessions.

    Each section begins with a number of mandatory filter questions. They establish the existence of a particular symptom in the past month. A positive response leads to a more detailed assessment of the symptom in the past week: frequency, duration, severity, and time since onset. Answers to these questions determine the informant's score on each section. Possible scores range from zero to 4 on
    each section (except the section on depressive ideas,which has a maximum score of 5). The example in Figure 1.2, shows the elements that contribute to the score for Anxiety. Any combination of the elements produce the section score. The elements that contribute to the scores for each of the symptoms can be found in Appendix A of the
    report.

    ---

    The assessment of common mental disorder and alcohol problems

    Appendix A
    A1 Assessment of common mental disorder using the CIS-R

    1. Calculation of CIS-R symptom scores

    Calculation of symptom score for Somatic Symptoms

    Score one for each of:
     Noticed ache or pain/discomfort for four days or more in past seven days
     Ache or pain/discomfort lasted more than three hours on any day in past week/on that day
     Ache or pain/discomfort has been very unpleasant in past week
     Ache or pain/discomfort has bothered you when you were doing something interesting in past week

    Calculation of symptom score for Fatigue
    Score one for each of:
     Felt tired/lacking in energy for four days or more in past seven days
     Felt tired for more than three hours in total on any day in past week
     Felt so tired/lacking in energy that you've had to push yourself to get things done on at least one occasion during past week
     Felt tired/lacking in energy when doing things you enjoy or used to enjoy at least once during past week


    Calculation of symptom score for Concentration and
    forgetfulness
    Score one for each of:
     Noticed problems with concentration/memory for four days or more in past week
     Could not always concentrate on a TV programme, read a newspaper article or talk to someone without mind wandering in past week
     Problems with concentration actually stopped you from getting on with things you used to do or would like to do
     Forgot something important in past seven days


    Calculation of symptom score for Sleep Problems
    Score one for each of:
     Had problems with sleep for four nights or more out of past seven nights
     Spent at least 1/4 hour trying to get to sleep on the night with least sleep in the past week
     Spent three or more hours trying to get to sleep on four nights or more in past week
     Slept for at least 1/4 hour longer than usual sleeping on the night you slept the longest in the past week
     Slept for more than three hours longer than usual on four nights or more in past week


    Calculation of symptom score for Irritability
    Score one for each of:
     Felt irritable or short tempered/angry on four days or more
     Felt irritable or short tempered/angry for more than one hour on any day in past week
     Felt so irritable or short tempered/angry that you wanted to shout at someone in past week (even if you hadn't actually shouted)
     Had arguments, rows or quarrels or lost your temper with someone in past seven days and felt it was unjustified on at least one occasion


    Calculation of symptom score for Worry about Physical Health

    Score one for each of:
     Worried about physical health/serious physical illness on four days or more in past seven days
     Felt that you had been worrying too much, in view of actual health
     Worrying had been very unpleasant in past week
     Not able to take mind off health worries at least once by doing something else in past week


    Calculation of symptom score for Depression Score one for each of:

     Unable to enjoy or take an interest in things as much as usual in past week
     Felt sad, miserable or depressed/unable to enjoy or take an interest in things on four days or more in past week
     Felt sad, miserable or depressed/unable to enjoy or take an interest in things for more than three hours in total on any day in past week
     When sad, miserable or depressed did not become happier when something nice happened, or when in company


    Calculation of symptom score for Depressive ideas Score one for each of:

     Felt guilty or blamed yourself when things went wrong when it hasn't been your fault at least once in past seven days
     Felt that you are not as good as other people during past week
     Felt hopeless, for instance about your future, during past seven days
     Felt that life isn't worth living in past week
     Thought of killing yourself in past week


    Calculation of symptom score for Worry Score one for each of:
     Been worrying about things other than physical health on four or more days out of past seven days
     Have been worrying too much in view of your circumstances
     Worrying has been very unpleasant in past week
     Have worried for more than three hours in total on any of past seven days


    Calculation of symptom score for Anxiety Score one for each of:
     Felt generally anxious/nervous/tense on four or more of past seven days
     Anxiety/nervousness/tension has been very unpleasant in past week
     When anxious/nervous/tense, have had one or more of following symptoms:
    heart racing or pounding
    hands sweating or shaking
    feeling dizzy
    difficulty getting your breath
    butterflies in your stomach
    dry mouth
    nausea or feeling as though you wanted to vomit
     Felt anxious/nervous/tense for more than three hours in total in any one of past seven days


    Calculation of symptom score for Phobias
    Score one for each of:
     Felt nervous/anxious about (situation/thing)four or more times in past seven days
     On occasions when felt anxious/nervous/tense,had one or more of following symptoms:
    heart racing or pounding
    hands sweating or shaking
    feeling dizzy
    difficulty getting your breath
    butterflies in your stomach
    dry mouth
    nausea or feeling as though you wanted to vomit
     Avoided situation or thing because it would have made you anxious/nervous/tense once or more in past seven days


    Calculation of symptom score for Panic Score one for each of:
     Anxiety or tension got so bad you got in a panic (eg felt that you might collapse or lose control unless you did something about it) once or more in past week
     Feelings of panic have been very unpleasant or unbearable in past week
     This panic/worst of these panics lasted longer than 10 minutes


    Calculation of symptom score for Compulsions
    Score one for each of:
     Found yourself doing things over again (that you had already done) on four days or more in last week
     Have tried to stop repeating behaviour/doing these things over again during past week
     Repeating behaviour/doing these things over again made you upset or annoyed with yourself in past week
     Repeated behaviour three or more times duringpast week


    Calculation of symptom score for Obsessions
    Score one for each of:
     Unpleasant thoughts or ideas kept coming into your mind on four days or more in last week
     Tried to stop thinking any of these thoughts in past week
     Became upset or annoyed with yourself when you have had these thoughts in past week
     Longest episode of having such thoughts was + hour or longer



    2. Calculating total CIS-R scores

    The total CIS-R score used in this report was obtained by summing the symptom scores described above. This total score reflects the overall severity of symptoms of common mental disorders (or neurotic symptoms) and can range from zero to 57. A score of 12 or above is considered ndicative of common mental disorder. The total scores are further grouped into four groups:
    0-5
    6-11
    12-17
    18 and over

  6. Spinetti

    Spinetti New Member

    for wading into the muck and rationally pointing out the built-in bias and circularity of White's "evidence."

    Like others above, I find the psycho-babblers too maddening and offensive to even read. But, their undeserved prominence requires refutation in their own terms.

    It's a dirty job, but somebody has to do it.

    Thanks for the post, Mezombie!


  7. Bluebottle

    Bluebottle New Member

    Of course we worry about our health, we are seriously ill & the medical profession here just sneers at us and tells us it's all in our heads!
  8. mezombie

    mezombie Member

    Posted by Elaine English on Co-Cure:

    Further to Tom Kindlon's post: "Challenging the argument (from Peter White (and others?)) that: having more symptoms in a definition isn't a good method of defining CFS (and hence in particular the Canadian criteria are bad)

    It is not difficult to show how facile Peter White's argument that once you get above 4 symptoms, ".you are more likely to find somebody with a psychiatric disorder and not CFS/ME. So I would suggest you do not use the
    Canadian criteria."

    On my bookshelf I have a copy of The British Medical Association Complete Family Health Guide. Quote from the foreward, ".the Complete Family Health Guide is based on advice from a panel of medical consultants chosen by the
    BMA, and their experience provides an unrivalled assurance of quality and reliability."

    Looking up the section on hormones and metabolism there are a variety of illnesses which have a considerable number of symptoms; to take one example hyperthyroidism, under the section WHAT ARE THE SYMPTOMS? the list is as
    follows:

    Weight loss despite increased appetite and food consumption.
    Rapid heartbeat, which is sometimes also irregular.
    Tremor (persistent trembling) affecting the hands
    Warm moist skin as a result of excessive sweating
    Intolerance to heat
    Anxiety and insomnia
    Frequent bowel movements
    Swelling in the neck caused by an enlarged thyroid (see Goitre)
    Muscle weakness
    In women irregular menstruation

    Which by my count is 10 symptoms.

    Other examples include Cushing's Syndrome, which lists 11 symptoms including depression and mood swings.

    Chronic kidney failure lists 8 symptoms plus a number of complications.

    Measles lists 6 symptoms plus complications

    HIV infection and AIDS lists 13 possible symptoms

    Toxoplasmosis lists 7 possible symptoms

    Heat exhaustion lists 9 possible symptoms

    Osteoarthritis lists 6 symptoms

    Chronic heart failure lists 6 symptoms

    Chronic myeloid leaukaemia lists 7 symptoms

    Scleroderma lists 7 symptoms

    Sleep apnoea lists 8 symptoms

    Asthma lists 7 symptoms plus 4 additional symptoms if the asthma becomes severe

    This is a sample, there other illnesses with more than five symptoms, but I think all that this shows is that the more complicated the illness the more symptoms the person is likely to exhibit!

    Maybe the BMA should stop producing such guides, or cut down the number of symptoms it lists for illnesses, in case the outcome is someone with a long term condition who doesn't respond to psychiatric treatment!

    Regards
    Elaine English

  9. I've watched most of them except where GP's are concerned, and I couldn't be bothered with the CBT talk considering I already know what it entails.

    I've found aspects of the talks interesting, others left me feeling pretty gloomy, others slightly perplexed. I've not got an extensive understanding of the research literature, however I do have some knowledge to pick out debatable points, such as the role of psychological stress. To my understanding the Dubbo study refuted this in cases of a post-viral nature -but this is one study, albeit an intensive one.

    I'd encourage anyone who feels indignant about the conference to watch some of the webcasts, I was disappointed in pathophysiology, I like most people would have liked to see someone like Dr Kerr there, but this wasn't stricttly a biomedical conference, it was mainly aimed at primary care.

    In defence of Prof. White the point he made about broader diagnosis he also emphasised the need to subtype, in contrast to what Wessely believed -according to White.

    I'd encourage anyone who feels indignant about the conference to watch some of the webcasts though, they aren't a complete waste of time.
    [This Message was Edited on 07/04/2008]