Sunday, October 7, 2012

Letter sent by Susanna Agardy to the Daily Telegraph

Letter sent by Susanna Agardy to the Daily Telegraph, in response to Dr.
Max Pemberton's article, "Why few dare tackle the psychology of ME" (
http://www.telegraph.co.uk/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html)



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 you do not do so because of a surfeit of energy. They will probably have to give up doing something else instead. They 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.
 

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