Reports from participants in GET and CBT trials

I remember getting a followup questionnaire I think maybe around 2010? But when I've asked Kings for the data, they would only send a diary note of my therapist appointments from the Unit saying the actual data is offsite, so I sent a request to Kings actual data unit and got crickets back...

Just before the Tribuanal that Alem and others did to get the data forthe reanalysis I accidentally spoke to Peter White, I called the number on the Pace web page and got straight through to him. He seemed like a decent chap, was somewhat horrified I had gone severe and the local Unit in Northumberland wouldn't help unless I could get to them (which I couldnt') and told me to contact Trudie Chalder direct as each centre held it's OWN data. But then I got a bit bogged down with other things and never got around to asking again.

I do remember filling in multiple choice questionnaires at the time, and also afterwards one or two, and being slightly bothered I couldn't remember what I'd put last time so had no real idea of my own progress or changes in my attitudes since the last one.

I honestly don't know how many people got a second bite at the cherry. I wanted APT, Alistair Santhouse in the final meeting that I thought was a medical one and he thought was to sign me off, so was a bit muddled, suggested GET very strongly. I persisted with the practice nurse and eventually talked to a Greek named lady, who wrote the GET guide noted above (which I've since found and should scan and upload I think, I say found, no idea where it is right now but it's here somewhere) who said the APT person was off sick so she could offer GET but a very gentle not like PACE sort. but as I said above I was too scared.

Recently now I've moved to Lincs, there's lady OT from teh me/cfs unit here who does house visits. She was very firm at the first meeting she didnt' want to talk about PACE and they don't do PACE related work with patients. She's had to though, cos it's my only experience of treatment and there's a bit of overlap...

 

i'm also no sure when the 10 year anniversary is, start of trial? end of trial? start or end of my participation on it. I vaguely remember filling one in again maybe in 2010? but it's so long ago, and at the time, I didn't know it would matter now! I assumed they knew what they were doing and we'd get answers.... (yeah I know stupid, but I didn't know and their policy of asking participants not to join groups/ look stuff up etc kept me in happy ignorance. I'd still have done the Trial as it was all that was offered on a timely basis. Actual bog standard treatment was a 12mth waiting list, I'd jsut had a year away from work to see if that helped, it didn't, so was low on savings. it is what it is).

 

oh the other thing I forgot is David Tuller spoke to quite a few of the participants in that first trip to the UK in 2014. And I think more since, but like the other lady above, many are still in a position where they need to keep their jobs or have other reasons for not going public. Me going severe in a way that meant I'd lost my career forever (it takes too long to get up to speed again to the level I was at), meant I had no reason not to talk about it.

 

If you started in the trial in 2007, the 2010 questionnaires you filled in would have been for the 2.5 year follow-up. That was published in 2015: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/fulltext

 

A deliberate part of the strategy I would think. Given that treatments were all driven towards modifying participants' subjectivity, and outcomes were measured subjectively, I'm sure they wanted to discourage people doing anything that might influence their perceptions. Another way of looking at it, is they maybe didn't want people accessing sanity checks with the wider community; one of society's implicit peer review mechanisms.

 

oh ok thanks. like I said, I can be quite flakey and also at the time, I had no idea I'd need to remember it all nearly a decade or so later! They ahve had changes of address from me at Kings but I don't remember filling in any other carbon copy checklist type things. Mind you from 2013 I couldn't until about 2015 just physically unable to hold pens and concentrate. So I may well have something I've never opened or opened and ignored.

 

I didn't get the feeling it was to stop me from accessing sanity checks. I think it was a (misplaced) effort to make it, erm can't remember the words for what I mean. David Tuller talks about it, how it's not blind because people know what's happening? a recognition that this was a thing and the best way they could come up with to deal with it? I remember not feeling pressured about it, they said they preferred if I didn't but could if I wanted.

I suspect I went along with it cos work was quite tricky and I didn't have much spare energy and there wasn't any easy parking near where the Camberwell me/cfs group met, and I'd rather go see my friends than strangers. so it was part selfishness on my part.

 

The PACE trialists really don't know what they were doing, do they. It seems like they were trying to impose some form of subjective blinkering, because they couldn't mask the treatments. But removing outside influence is not the point of blinding or placebo control. The trial is to test the trial interventions. If they then seek to control external influences, that trial certainly ceases to "pragmatic" in any way. You cannot call a trial "pragmatic" if you then seek to interfere with participants' behaviour outside that trial. Yet both Wessely and Sharpe have described it as just that. [eta: although I was sure of that, I can't actually find them quoted as saying that, although one of the centre leaders did in the SMC expert reaction.]

@Goblinf - you also described the GET you were offered as a second treatment as being "very gentle not like PACE sort". The PACE authors have always described their version of GET as being very safe, and not like the sort of GET you might receive in a CFS/ME clinic.

But then, of course, they also say that no-one was harmed as a result of the trial...


[eta2: I didn't dream it. SW did alude to it being "pragmatic", and said here: "So patients knew what they were getting. This is what would happen in real life, which is what the PACE trial was trying to recreate."
That, to me, is the description of a pragmatic trial.]

 

Maybe I don't mean 'blind'. I'm not confident I know what I mean. But yes my understanding was to limit outside influences that might change how I saw the treatment and/or my progress. At least that's how I think of it now, I'd have to look at my notes from the time for if that was true back then (if I noted anything, sometimes I did sometiems I didnt' but I did note stuff down in 2008/9 when it hadn't worked and I was very disappointed and cross).

For theGET woman, I'm not sure I was clear. What she was saying was she normally offers GET and there'd be GET elements cos there is with pacing, but she'd do it at my own pace and not pushing my boundaries of what I felt was safe. I do know I have notes of those converstaions cos I wrote them down at the time. but with the house is hte current statte of disarray, no idea where they are. In about 6 months the adaptations will be done, downstairs belongings will be back downstairs and upstairs belongings (pace papers included) will no longer be buried and i'll be able to find them. She was offering me pacing within a GET framework I think. Super slow GET not being pushed further than I wanted to go I suppose. Which from what I hear isn't normal with GET that insists you keep going even if you think you shouldn't... Anyway my ability to work was at stake so I said no thanks.

They did try and get me pacing help from Barts, but Barts annoyingly said that I'd have to go on a 12month waiting list, no queue jumping (even though I think Kings people told me Barts had spaces, Barts didn't want queuejumpers but I may have hallucinated that, I'd need to see my notes. I do hallucinate stuff all the time and don't trust my memory). And I moved out of London before I got to the top of the Barts queue.

And that was the last help I had. No help when I went severe cos Northumberland me/cfs nhs in newcastle would only help if I could turn up to them (too far to travel safely for me, would need stretcher transport and stretcher waiting and then wouldn't be able to function for the appointment) and anyway they only did diagnosis and I already had one, so that was that. My gp tried hard to argue with them even phone convo but they said no. I find that weird cos there was treatment offeered to some people, I had a friend in Liverpool who used to go see Julia newton but newton wasn't in the same dept? anyway I was too unwell to work it out.

Then I moved to Lincolnshire and their me/cfs unit does home visits Yay them!!!!she comes every month. we're working on my sleep hygiene and learning how to rest properly. no time limit to it apparently, it's for as long as is needed that they can help. she's an ot so no pyschobabble from her.

 

also today the OMF have released paper about potential blood test. tiny first step but hopefully eventually a blood test for the illness which kicks the psychobabble into the long grass in due course. though to be fair everyone at kings said I was genuinely physically unwell. they had no magic bullet but should be able to help me manage my symptoms to do more. *hollow laughter* turned out managing my symptoms involved giving up everything but part time work. then going severe was giving up everything except food and water in one end and waste out the othr for a while, and some people ahve it so much worse and more severe for a hell of a lot longer.

 

It’s great that the Lincolnshire ME/CFS unit does home visits and that you sound to be happy with the support you are getting from them so far. That is encouraging to hear! However, on their webpage they say that they use a “10 week group rehabilitation programme” which gives me great cause for concern. I’d advise you to tread carefully with them! Also, I’ve heard many ME/CFS patients say that sleep hygiene made them worse, especially when it involved restricting daytime sleeping. It certainly never did me any good. I’d hate to hear that you had been made worse by further bad medical advice after all you that you’ve been through already with the PACE trial.

http://www.lpft.nhs.uk/our-services...al-health-services/lincolnshire-cfsme-service

As far as I’m aware all the NHS specialist ME/CFS services are using the standard NICE recommended treatments (CBT & GET). Which is a terrible situation for PWME in the UK and why we urgently need the guidelines to be updated.

 

Yes the 10 week thing worried me too. But that's for people who can get to them. For home visits, they come (for me anyway) monthly (as appropriate) for as long as what we are doing is helping. At the moment my sleep hygiene is aiming to be off computer by 11 and asleep by 12. oops it's nearly 2am... arghhh. logging off now... She wants me to restrict naps in teh day but told her that's not happening until nighttime is sorte dout.

 

My wife has mild/moderate ME, and has learned to pace herself well. Although she does nap in the day she tries to avoid doing so too near to bedtime, because her nighttime sleep can be quite fitful. But how that would apply to someone with severe MS I don't know.

 

Posts have been moved from Guardian: George Monbiot 'Apparently just by talking about it, I’m super-spreading long Covid', April 2021 - Discusses ME/CFS and PACE

It appears that in the U.K., they’ve forgotten their duty of candour when it comes to M.E patients. They never told me before I went on the trial that I could be harmed. Infact I remember specifically it saying something like, you have nothing to lose and everything to gain.

 

There must be a way of getting this recorded - why is it so hard though? I’m genuinely asking because if we can record adverse effects for vaccines and medications, why not for this?

I remember for the trial I was on, when I told them I felt much worse etc, they just wrote back saying to continue with the techniques I had learned. It’s very doubtful they recorded any harms as they didn’t think of it as a harm, just a setback or me not applying the techniques. So maybe what’s stopping them is that the clinicians involved decided it wasn’t harm.

 

Duty of Candor didn't exist before 2015. AvMa fought long and hard to achieve it.

 

Yes the trial I was on was after 2015.