The PACE Trials have recently been published and demonstrate clearly
what is wrong with the present way that vested interests have
manipulated the establishment view about myalgic encephalomyelitis
(ME/CFS) and forced tens of thousands of patients and their families to
live in a continual state where no proper research is sanctioned, good
science is denied and where pointless and biased studies are funded by a
system which denies human rights.
The Pace Trials cost nearly £5 million pounds of tax
Patients were opposed to the trials right from the start
due to patient selection criteria - save from two unrepresentative
organisations who have taken money from the government in order to
accept their policies toward ME.
ME is a distinct
neurological illness and has been classified as such since the 1969 by
the WHO in ICD10-G93.3. Fatigue Syndrome has its own
classification in F48.
It is in none of the patient groups’ interest in
mixing these patient cohorts and trying to find a one size fits all
The purpose of any medical
research should be the benefit of the patients and the PACE trials do
not benefit ME patients but rather known vested interests who control
what the media publish and what the Medical Research Council fund in
relation to ME/CFS.
In recent years Invest in ME has been contacted more and
more by patients or their carers asking for advice as the NICE
guidelines recommendation of using CBT and GET has been forced upon them and
patients have been bullied into activities beyond their limits.
led to some severe consequences such as suicide attempts but parents of
children in such cases are often afraid of complaining due to fear of their
children being taken into care.
We fear this is going to get worse now
after these PACE trial results are being taken at face value.
How ironic it is that the Department of Health and the
UK National Blood Services permanently prohibit people with ME/CFS from donating blood - their reasoning being that ME/CFS is a relapsing condition and this was to protect the health of patients.
Yet now the message to
the healthcare professionals from the PACE trials is that graded excercise and cognitive behaviour therapy
are helpful - thus forcing vulnerable and
physically ill people to risk further damage to their health.
By any measure the PACE trials are flawed and are not
the result of proper research. Using diagnostic
criteria which do not define patients with ME/CFS and which exclude
people with neurological disorders means that patients participating in
these trials were of a
heterogeneous variety – thus making the results completely
irrelevant. This nullifies all of
PACE trials are designed, created and performed by those who view ME/CFS
as a consequence of wrong illness beliefs or deconditioning.
trials are bogus science and have no relevance in the treatment of
people suffering from myalgic encephalomyelitis.
The theme for the 6th Invest in ME International ME/CFS Conference 2011
on 20th May in London is The Way Forward for ME - A Case for Clinical
Trials. It reflects
our view that translational biomedical research is perhaps the best way
forward now – allowing patients to participate in research and to have
treatments used/developed which can be passed on quickly and safely to allow patients
to reclaim their lives back.
home page -
Invest in ME
Registered UK Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ,
The Way Forward for ME - A Case for Clinical Trials
6th International ME/CFS Conference
20th May 2011 Westminster, London