General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study
Dr White contacted me to ask that I show the common courtesy of not
releasing any of his statements from our personel correspondence without
asking permission.
I sincerely apologize for my lack of etiquette and I hope my reply to Dr
White makes my position clear.
Dr White.
I beg your pardon for quoting from your personal correspondence. I
thought the statement was general enough that if your papers reflect this
stance, your position on CFS was in the public realm.
I wish I could say I meant no harm, but I have been forced to experience
CFS in a way that brooks no compromise with psychological views or certain
specific recommendations of therapy, and I wish to stop these views and
therapies from being inflicted on myself and others in a similar
condition.
I am not against graded exercise or I wouldn't have undertaken the
proposition myself. But my own experience and that of others I know is
that graded exercise in no way corresponded to an increased ability from
rehabilitation.
The exercise intolerance was totally dictated by the inflammatory response
as modulated by some unknown immunological upregulation.
Trying to overcome this by overexertion and attempting to make progress
through strength of will without taking this factor into account was
devastating. So much so that I feel it is of vital importance that this
inflammatory factor be made the principle issue of investigation and that
GET conducted without knowledge of this is just a shot in the dark.
I remember the story of a schoolgirl with this illness who was forced by
her family to shake off her "negative attitude" and go to school despite
her hysterical sounding insistence that she was deathly tired. The school
called to say that she hadn't shown up for her classes and when they went
to retrace her steps, she was found laying on the sidewalk fast asleep in
the pouring rain. Only then did her family believe her. Trying to
induce someone to shake off their attitude and do GET without realizing
that at any moment someone who had been doing somewhat better could
suddenly lose their capacity again and collapse is like that family
pushing that little girl out in the rain.
We need answers for what is causing that. Not a push in the back to buck
up and show a little more attitude.
-Erik Johnson
___________________________________________________________
Again I make my appeal to Professor Wessely and Dr White that if you
truly consider CFS/ME to be a physiological illness, to act in accordance
with that view and address the immunological abnormalities or recuse
yourselves from this investigation.
Rapid Response:
Prof Wessely, Dr Whites Views - Courtesy
Dr White contacted me to ask that I show the common courtesy of not
releasing any of his statements from our personel correspondence without
asking permission.
I sincerely apologize for my lack of etiquette and I hope my reply to Dr
White makes my position clear.
__________________________________________________________
Dr White.
I beg your pardon for quoting from your personal correspondence. I
thought the statement was general enough that if your papers reflect this
stance, your position on CFS was in the public realm.
I wish I could say I meant no harm, but I have been forced to experience
CFS in a way that brooks no compromise with psychological views or certain
specific recommendations of therapy, and I wish to stop these views and
therapies from being inflicted on myself and others in a similar
condition.
I am not against graded exercise or I wouldn't have undertaken the
proposition myself. But my own experience and that of others I know is
that graded exercise in no way corresponded to an increased ability from
rehabilitation.
The exercise intolerance was totally dictated by the inflammatory response
as modulated by some unknown immunological upregulation.
Trying to overcome this by overexertion and attempting to make progress
through strength of will without taking this factor into account was
devastating. So much so that I feel it is of vital importance that this
inflammatory factor be made the principle issue of investigation and that
GET conducted without knowledge of this is just a shot in the dark.
I remember the story of a schoolgirl with this illness who was forced by
her family to shake off her "negative attitude" and go to school despite
her hysterical sounding insistence that she was deathly tired. The school
called to say that she hadn't shown up for her classes and when they went
to retrace her steps, she was found laying on the sidewalk fast asleep in
the pouring rain. Only then did her family believe her. Trying to
induce someone to shake off their attitude and do GET without realizing
that at any moment someone who had been doing somewhat better could
suddenly lose their capacity again and collapse is like that family
pushing that little girl out in the rain.
We need answers for what is causing that. Not a push in the back to buck
up and show a little more attitude.
-Erik Johnson
___________________________________________________________
Again I make my appeal to Professor Wessely and Dr White that if you
truly consider CFS/ME to be a physiological illness, to act in accordance
with that view and address the immunological abnormalities or recuse
yourselves from this investigation.
Competing interests:
None declared
Competing interests: No competing interests