I was a participant on the PACE Trial, at King's randomised onto the CBT strand.
I had initially been significantly affected by ME/CFS back in 2001 when exhaustion had prevented me from being promoted and led to me working as a part time consultant thereafter.
I took the whole of 2006 as a sabbatical. This proved ineffective and led to my referral for investigations. By the time I reached King's CFS Unit I was desperate. Trudy Chalder was the first person to acknowledge I was ill and offered me hope.
The Trial was presented as a way to help others and myself: there would be no magic bullet but I should be able to stabilise and improve my activity level as a moderately affected person.
What happened? I gave up everything outside work and cut my work hours. My repeat six minute walking test acheived around half the distance of the initial one. I never reached a baseline but the grinding exhaustion eased slightly. In 2013 other medical issues pushed me into being severely affected (cont).
(cont2) One day I was unable to drive, then to climb stairs. Then unable to get and drink a glass of water, I could only crawl. That 'descent' was terrifying. It wasn't a relapse. I'd never experienced anything like it. I'd been told the illness wasn't progressive, I couldn't possibly end up in a wheelchair (my biggest fear back in 2007).
None of the techniques for CBT that I'd continued to use since the PACE Trial worked. My GP could only offer me painkillers and anti depressants. There is NO treatment. NO cure. Since then basic old fashioned convalesence has me staggering around cruising the furniture, able to use the internet, but housebound and
On balance I went into the Trial hoping for a cure, hoping my participation would help others. The CBT has helped me cope with the shock of being ill, taught me to be patient with the convalescence, helped me with the grief of becoming someone else, lesser, virtually non-existant. But no more than that. (cont)
(cont3) And my feelings on the PACE Trial? Honestly, if biomedical research came along that had a success rate for recovery of under 10%? I'd be thrilled for the 10% it helped!
So why am I not thrilled by the 10% results of the PACE Trial? Because the goalposts were moved. Maybe for good reasons, maybe not. I'm not a scientist, I don't want to know the ins and outs, I just want to be fixed. I want everyone carrying the ME/CFS label to be fixed. I want my life back, I want to be able to just walk to the loo without wondering if I'm wearing enough clothes to get there and back without turning into a block of ice lying on the floor until my energy trickles back half way. I want to be able to work. I want to be able to go to the corner shop, to the end of my (tiny) garden, to not have the half mile to my parents' house feel like it's on the moon.
In that context - as a PACE Trial participant there's a couple of things I want: (cont)
(cont4)
What do I want from the PACE Trial?
1. I want the data they hold to be rerun using the original protocols (wrong word?). To see how the numbers would crunch if they hadn't moved the goals half way through. The data was consistently collected all the way through. It's how it was handled afterwards that changed. If you don't understand that, have a look at David Tuller's work referred to above.
2. I want the data underlying the papers published in reputable journals to be released so that professionals can objectively assess if it holds up. I want to be able to trust the results published. There are significant factual issues with the way the results have been presented (again see David Tuller).
3. I want the objective data, the walking and the stairs and the monitor as well as the 'how do you feel' data collected, suitably anonymised, released for other researchers to use. It's valid. It exists. There's so little research money, let's not waste what's already been spent!
(cont 5) There's probably other things I want. But writing this has used up all the energy I own today. I'm having trouble staying awake now. I hope the glimpse into how one of the 640 odd patient's lives has turned out adds a bit of humanity to the debate. We are people. People who are ill. Not just lazy or deconditioned. What we need is less arguing, and more best practice and professionality from those who are supposed to be fixing us!
Thankyou.