Submitted by Niccola Simpson email address niccola1simpson@ecosse.net
May be reposted
I have just received the submission of the ME guidelines to NICE from 
the ME
Association. They claim that they have consulted their members on this,
before submitting their guidelines today which is the last day for
submission to be handed in. If I was not online I would not have known 
about
the NICE guidelines draft. I as a member of the ME Association have not 
been
consulted about this.
The vast majority of the ME Association members are not online, so will 
know
very little or nothing of the NICE draft lines and what is in it and  
AfME
and the other ME charities are no better.
    I have been lucky enough to get a summary of the draft of the NICE
guidelines, and they made my blood run cold. They advocate CBT and GET 
for
everyone who has ME/CFS this includes the severely affected and when a
relapse or an increase of ME/CFS symptoms occur they recommend that the
level of physical exercise is maintained to prevent deconditioning. 
From
personal experience over the last 11 years that I have been ill I have 
tried
to raise my daily physical and mental output, when ME/CFS symptoms 
start to
reappear I have tried to carry on at the level I was at, my symptoms 
got
worse until I was unable to carry out even the most basic of tasks to 
keep
body and soul together, I then had to collected and go and stay at my
mothers so I could be looked after until  could take care of myself 
again,
this took around 3 months.
    Once again the ME Charities have sold the ME community down the 
river
they seem to want to run with the Fox and Hunt with the hounds and the
losers in this game are the people who actually have ME /CFS.
    There has been 8.5 million pounds to set up clinics in England and
Wales, the vast majority of these have been run along the guidelines 
that
this illness is psychosomatic and have used CBT and GET on their 
patients.
The staff running these clinics do not have a full understanding of how 
this
illness works in fact there are very few people in the UK who are 
medically
trained who understand this illness at all.
    There is no diagnostic test for ME/CFS the diagnosis is arrived at 
by
eliminating other illnesses that show some similar symptoms, this means
there is a delay in the diagnosis and in the meantime the patient is 
given
the wrong information, they are told to take more exercise when they 
should
be resting which makes their illness worse. If they rest from day one 
they
stand a chance of recovery; where as if they go back to work or take 
daily
exercise there is  very good chance that they will not recover at all 
and
their illness will get worse.
    The WHO have this illness under the Neurology section of illness, 
this
is due to the many neurological problems that people with ME/CFS have. 
What
is required is proper research into the physical causes of this 
illness,
then patients can receive the correct treatment to help them on the 
road to
recovery.