Reanalysis of Pace Data

Today a paper has been published in BMC Psychology. HERE.

It has been summarised here by Simon McGrath HERE.

And this is how I feel about it.

Having been worsening moderate at the time I was on the PACE Trial in 2007 and then going severe in 2013 (nothing to do with the PACE Trial) - there is a glimmer of light on my horizon, I can stagger around the house, my brain has come back a lot, I've been assessed as needing an electric power wheelchair and I'm hoping to be referred to the local me/cfs unit who do home visits (yay them!) for help and brain picking on my various symptoms. So that's all good. But by my standards of 2007 when I could still work parttime (albeit not do anything else) I know that person I was, wouldn't be considering those to be glimmers of hope so much as signs of how far my health has collapsed.

Anyway, this is the comment I posted on Simon's analysis.

Feel free to share it:


well those results make more sense to me! I was on the CBT of Pace Trial starting early 2007 at Kings;  they said there wasn't a magic bullet but they hoped I'd be able to do more by the end. I worked really hard at it and by the end, the therapist wrote to my gp he was someone bewildered and annoyed (my paraphrase) that this hadn't happened.

during hte period from winter 2005 (as a result of being told by a gp in 2004 to sleep less and exercise more, which sounded like an excellent plan as I loved exercise I bought a bike and commuted a couple of miles each way to work and back - I increasingly had time off sick with tonsil issues and lost my job as a result of that. I never worked full time again), my moderate me/cfs was getting worse. The CBT, by dint of us getting stuck at the bit of the Manual that was about creating a baseline (it was only during the recession 2010+ when there was no work available for a contractor with variable health that I realised trying to work was above my baseline back in 2007/08), managed to slow down the decline in health with the me/cfs, that and going from a 50 hour week to a 25 hour week at work. So I no longer had the lead carapace of fatigue a minute or so after waking. BUT my walking test, at the end I managed to do half the distance as at the beginning in the same amount of time, and the same with the up down step test. I also gave up skiing, swimming, walking for pleasure, going to church, going out with friends, cooking and working full time.

So for me, the idea that the fatigue improved but function didn't. Yes, that's totally spot on. And it's always puzzled me how my experience wasn't reflected in the overall results - particularly as the Unit implied that I was one of the few who carried on working and was therefore something of a 'poster girl' in a way.

Whilst i'm only ONE person out of the hundreds at a variety of different centres. Finally, the results make sense on the original protocols.

One other thought is that i was told at the beginning that if I didn't improve on the allocated arm, I could choose one of the other arms at the end. I chose pacing. but they didnt' have anyone to deliver it. they tried to get me to do a pacing form of get, but I was too scared. I wonder if that offer at the beginning was (a) actually translated into treatment at the end for many of the participants and (b) whether those who did take it up are a subset that can be analysed? Or maybe they did... I am not at all understanding the ins and outs.

When I went severe in 2013, living in Northumberland by then, there was no provision by the me/cfs unit to help people who had already been diagnosed and couldn't get there. So for lack of anything else, I picked up the manual. and tried to follow it. the sleep hygiene and boom and bust elements did work to stabilise me again, but again, it was by dint of reducing what I do to well frankly food and water in one end and out of the other for a year, slowly building to being able to hold my head up by myself and sit up in bed in year two, and finally going from crawling to staggering in years 3 & 4. And that was all down to giving stuff up. Which is not what the CBT itself was mostly about I think?

The one thing that the CBT on Pace gave me was this
'think about how to do things differently'

it has helped me cope with the grief of losing myself, my sense of self worth, the person I was with my career and interests and friends. It has helped me scrape together a modicum of quality of life. admittedly not one I would have recognised back in 2007 when I was terrified of jsut getting worse bit by bit and ending up in a wheelchair (now I yearn to be well enough to use a wheelchair snort). but from where I am now, there's some quality, compared to before.

So. for me, I have mixed feelings. Mostly though, I genuinely don't understand why a medical trial that was to find out if these worked, was presented afterwards as a viable cure. When it obviously wasn't. Even with the change in protocol.

If only they'd presented it as a stopgap way of maybe alleviating the worst symptoms by being consistent in using energy and doing less (which is what I did in my CBT) consistently, or merely as a way to cope mentally with the horror of your life slipping away before your eyes, then maybe, just maybe, they would have been acting as 'best industry practice' researchers. As it is, as a DIRECT result of their misguided/ accidental attempts to appear more successful than they were, a great deal of anguish and harm has been caused globally by the poor implementation of strategies that will never ever produce the vaunted results. And, sadly, they have blood on their hands for that mistake. They also have blood on their hands for not, in the face of overwhelming factual evidence, saying, ok, sorry we misstepped, let's make it right, let's analyse it according to the protocol and see what it really tells us, which is that with CBT people were less fatigued but lost function, and with GET people had more function (and presumably more fatigue). For me, as a long standing (im)patient with this illness, you know what that tells me? to look at the elements of CBT and GET more closely and find out if a balance can be found where people both increase function and decrease fatigue. As a layperson and from personal experience - that lies in doing less, resting more between activities and living within your energy envelope. Oh wait, isn't that what the patient community has said all along? Well yes. Unfortunately, that sort of pacing ISN'T what hte protocols tested. It was some never seen in real life thing called APT.

I am so sad that the reasearchers, nurses, therapists and statisticians who genuinely undertook this wanting to help us (possibly from the vantage point of high on their hobby horse but nevertheless) have found themselves in a maelstrom of accusation and finger pointing, deservedly as far as protocol changes go as far as I can tell, and also deservedly as far as their attitudes to the patient community and anyone who doesn't hold the same opinion (everyone is entitled to their own opinion but not their own facts) but above all, that their work and good intentions have caused so much harm and anguish to those they sought to help.  As individuals all those I've ever spoken to or met who were part of PACE were genuinely concerned about my health and whether I was getting help or not. In fact Kings me/cfs unit were the first people to say it's ok, it's real, you are genuinely unwell, you aren't imagining it. And for me it's not just about a fundamentally flawed trial, it's about careers broken and lost (both patients and professionals involved in the strange way the trial results were presented) but above all, lives, patient lives lost. I am so very very fed up of seeing yet another fb post for an me/cfs person who has lost their battle with other conditions, with that illness or from suicide because they just can't go on, they have no hope.

And above all, that's what the false presentation of the Pace findings did - gave hope that was an unrealistic expectation and then stole it away - that presentation sets up EVERY SINGLE PATIENT who followed the protocol on the trial (acceptable because that was about finding out if it worked or not) and subsequently who  takes the treatments as that's all that is available, on the false premise that they will fix us (which is unforgiveable) to FAIL. Setting them up to fail at a time when they are frightened, alone and often with looming financial crises as they can no longer work. Until you've been through it, you have NO idea how terrifying it is to have pain that you are not sure if it's real, to be debilitated by it, to wonder if you are making it up, if you are just being a wuss and if you could just man up you could get over it, but above all, not knowing every time you try and move or even think, whether or not your mind and body will follow instructions. I've still not got over that terror, even though mostly my body is almost reliable these days. And it's that lack of understanding of the fear caused by the illness, by the reaction of friends and family, of the general public, of health professionals that you can't rely on your own body, but you can rely on it getting worse if you try too hard, that is the real root of the rot that the appallingly presented PACE results has as it's legacy.

I'm pretty sure that's NOT what the PACE researchers ever intended. But it IS the consequence of their mistaken attempts to gild the lily with the results.