Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Susanna Agardy's letter to Max Pemberton at the Telegraph

Discussion in 'General ME/CFS News' started by Daisymay, Oct 6, 2012.

  1. Daisymay

    Daisymay Senior Member

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    From Susanna Agardy, with permission to repost. Letter sent to the Daily Telegraph:

    Max,
    You claim that you would 'happily champion (the) cause' of ME patients but you cannot because some of them have threatened you. Unfortunately your sympathy does not come through in your writing, but your gloating and bias do. It is unfortunate indeed that some people react by threatening you, but this is what happens when people are repeatedly needled and invalidated. It is you who started it all off by your sensationalist comments. Doctors who are sympathetic and respectful do not get attacked in this way.

    You are then apparently content to offer your adverse experience as tabloid-fodder, all the while sending out the message that ME should be untouchable, thus continuing the provocation.
    What is your purpose exactly?

    Max, it is unreasonable to expect that repetition of the same behaviour will elicit a different response. Have you considered changing your behaviour? For example, you could start writing, in an accurate and respectful way about the biomedical findings about ME. There are many, and we have not seem them mentioned in the British press for a long time. They demonstrate immune, neurological, cardiac endocrinological, digestive system abnormalities as well as viral and other infections, for a start. You could expect some scepticism at first, because you would need to live down your reputation for hurling provocation, but after a while you would no doubt get a different reaction. Or,as you suggest, you could just stop writing about the topic.

    Please do not drag the Cartesian legacy of the mind-body split into it. For all practical purposes this is a bit of intellectual self-indulgence. It is worse than useless for an ME patient who barely has the energy to put one foot in front of the other. This idea is strongly associated with invalidating the seriousness of the physical illness of ME and for justifying psychiatric control over it. How useful is this to an AIDS patient or someone with appendicitis to which this model must also apply?

    You imply that the Lipkin findings mean that ME is not the result of a biological agent-a point you seem anxious to prove. He said nothing of the sort. He said '...ME/CFS could be reacting abnormally to normal levels of a virus or a virus could kick off a chronic response and then completely disappear -leaving a dysregulated system behind.' He added that ME/CFS is not a psychosomatic disease. It is important to report him correctly.

    Abnormal brain scans also do not mean that a patient necessarily has a psychiatric condition a point you are anxious to push, any more than low blood volume or abnormal immune responses illustrate that point. Please examine your biases.

    ME patients who manage to write to do not do so because of a surfeit of energy. They will probably have to give up doing something else instead. The feel they need to correct misleading information being published about them, just as you anxious to put your own message out. I hope you will stop making the situation for ME worse.
     
    BurnA, leela and Enid like this.
  2. Enid

    Enid Senior Member

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    Thanks dasiymay - and personally "engaging" which is evident in his own outspoken opinions in his writings (though for him usually a rant against somebody or some institution).

    A marvellous letter.
     

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