Monday, 19 January 2015

Tom Kindlon puts PACE in its place!

Irish advocate Tom Kindlon has looked closely at the PACE related papers published to date.

He says he finds it difficult to comprehend the glaring errors in PACE methodology and interpretation that remain largely unchallenged.  Also, he questions the fact that many of the outcomes in the published protocol have never been published or released.  

Consequently Tom has made it a personal crusade to ensure these faults are not swept to one side.

In a Rapid Response letter to the BMJ published today, Tom made some astute observations - indeed the title of the letter itself tells much:  

The letter can be read in full here:
Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial

And it is worth reading, because Tom is not afraid to explain where PACE becomes unreliable.  For example:

"A PACE Trial manual itself says "the essence of CBT is helping the participant to change their interpretation of symptoms": this could lead to altered or biased fatigue scores, one of the two primary outcome measures."

Nor was he shy to mention where some of the PACE trial funding originated: The UK Department of Work and Pensions!

Tom goes on to decry the woefully small improvements observed in the six minute walking test, and to point out that the original model for the study said there was no reason participants should not return to full functioning!

The PACE treatments obviously failed on that account, because as Tom notes after treatment the "distance walked remained comparable to people with many serious conditions, and considerably worse than the distance walked by healthy elderly adults".

Hardly "recovery"!

Tom's final conclusion puts PACE firmly in its place as he says:

"Probably the main contribution of the PACE Trial has been to add to a growing body of evidence that while CBT and GET for CFS have resulted in some changes on subjective measures, they haven't lead to improvements on objective measures."

Like Tom, I too am mystified by the blinkered attitude towards the conclusions of the PACE trial papers.  However I would like to commend Tom on the substantial work he has done over the years pointing out the errors and holding researchers to account when their interpretations are suspect.

Indeed Tom's whole life has been dramatically affected by ME, as his bio below demonstrates:

Tom Kindlon Bio:

Tom Kindlon is an M.E. patient and activist from Ireland. He has had M.E. since he was 16. Initially mildly ill, he blames becoming severely and chronically ill with M.E. on a late diagnosis and following advice to exercise. He had completed two years of Mathematics in Trinity College, Dublin when his health deteriorated. Initially he took a year out but his health never recovered.

He has now been severely affected 20.5 years and has spent most of his energy in the last 19 years on M.E. matters. He has helped run the Irish ME/CFS Association during that period.

For the last decade or so, he has been following the published literature on ME and CFS. Noticing that a lot of questionable material was not been challenged, he started writing to medical journals. He has had 17 letters published in various journals including the Lancet and the BMJ, along with 100 or so e-letters.

He also had a paper published in 2011, "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" 

Here are some of his links:
Facebook account on M.E
PubMed Commons (for most of his e-letters)
ResearchGate (details on all his publications)

Further Information:

Tom's letter today is a Rapid Response to the BMJ Research News  coverage of the Lancet paper: "Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial". 

Some of the recent media reports surrounding this issue can be seen here.

A few more quotes from Tom's rapid response to the BMJ:

1 comment:

  1. I'm delighted to have found your blog. I am a disabled mum with many health issues and needed a bit of reality and information. Thank you, J9 x