Invest in ME Statement

Initial Statement on the PACE Trials

 

February 2011

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.

Simple facts:

The Pace Trials cost nearly £5 million pounds of tax payers’ money.

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 management technique. 

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.

This has 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 this study.

The PACE trials are designed, created and performed by those who view ME/CFS as a consequence of wrong illness beliefs or deconditioning.

The PACE trials are bogus science and have no relevance in the treatment of people suffering from myalgic encephalomyelitis.

 

References:

 

 

Postscript:

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.

Conference home page - click here

  

 

Invest in ME

Registered UK Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ, UK

www.investinme.org

The Way Forward for ME - A Case for Clinical Trials

6th International ME/CFS Conference

20th May 2011 Westminster, London

http://tinyurl.com/22kfekc

 

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