13. PACE Trial complaints procedure

A few years ago a Scottish primary school teacher became headline news, joined by an English vicar a few years later, because she told a class of nine year olds that Santa wasn't real. The vicar, in his Christmas address to a school assembly, added the grisly legend of St Nicholas rescuing three children who had been killed by a butcher and placed in a barrel to be pickled and sold as ham!

What a nightmare! Doing a teaching job well for years - I knew the teacher: she was excellent and much loved as a P1 teacher to one of my children - and finishing your career as headline news in the local papers for an off-guard comment during the ever-hectic and increasingly frantic run up to Christmas. Parents were reported as saying their precious little pumpkins had been traumatised. Children gushed histrionically at their parents. 'You lied to me. Never again in my life will I trust you.' It's harsh that this teacher, being accountable for her actions, received such a public grilling and a quick retirement. Everyone who works in education, health, social care or the church knows that they have to be accountable for their words and actions at work and many teachers or vicars reading this (are there any?) might say, 'There but for the grace of God ...'

This is why I am so surprised that the researchers of the PACE Trial seem NOT to be accountable for their work when it is very publicly being ... at the very least queried ... but more accurately ... complained about vociferously.

Do research establishments like QMUL not have a complaints' procedure? It's not just one person complaining for example that the trial's researchers have connections to the Dept. for Work and Pensions or that a patient could enter the trial with a score of 60 that marked them as disabled then end up with the same score and be marked cured.

There is a queue of complaining people that stretches further than most ME sufferers can walk. More than forty highly-regarded doctors, scientists, researchers from around the world have written to the Lancet to request clarity and transparency of PACE's research methods, ME charities have joined in and on social media the queue is lengthening daily with ME sufferers voicing complaint.

"The best research evidence is usually found in clinically relevant research that has been conducted using sound methodology." (Sackett D, 2002)

All that people are seeking is reassurance that this research has been conducted using sound methodology. It is really very important because this research is the evidence-base on which ME treatment will continue to be based for years to come in the UK and abroad. This research is the evidence that feeds the NICE Guidelines, The Cochrane Report and that makes MECFS clinic staff able to say 'Research proves Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy) are the most effective treatments for MECFS' (while patients say GET worsens the condition). That makes CFS clinic staff securely accountable for offering these treatments and above complaint. This evidence will provide information about how GET and CBT can improve functioning of people with MECFS to the department that deals with benefits and pensions thus continuing to deny sufferers the care and benefits that they not only deserve but are vital. PACE could pave the way for further UK (and USA?) funds being diverted from biomedical research into more of the same psychological studies.

The evidence-base is the rock upon which treatments are built. Very, very important! We all want to know that The PACE trial is built on solid rock and not sinking sand.


(Over my word limit today - 600+ words - but it's the most important issue for MECFS sufferers at the moment)