Reports from participants in GET and CBT trials

[Lucibee]

someone else is also looking (although not sure why only in connection with SW)

Yes - that's specifically for Myhill's MAIMES campaign. Although SW is listed as an SMC doctor, he claims he never saw any patients during the trial (only during recruitment).

I was trying to gather *unsolicited* reports from elsewhere on the net together in one place.

 

[MeSci]

negative consequences of rest

negative consequences of rest?????

 

[Tom Kindlon]

 

[Lucibee]

Thanks @Tom Kindlon - Lois's account was the first one I posted on this thread. She's also been quite active in posting her account elsewhere, and another lengthy account of hers is included in Alem's collection of stories for the tribunal.

 

[Inara]

I was on the PACE trial at Kings, on CBT. But it didn't really work for me, so per the Trial terms, they offered me Pacing instead, but didn't have the staff, so we talked about GET but I was too scared to try it.

https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557#p12993

Um, is it normal to have people switch arms in a trial that tests treatments?

 

[Lucibee]

Um, is it normal to have people switch arms in a trial that tests treatments?

No, it isn't. But who knows what went on at Kings. In another account, someone was told they were in the PACE trial 5 years after it had stopped. To help recruitment, it seems they had to tell people that they would get their preferred treatment as long as they stuck with the allocated one for a bit. It raises the question of whether there were partcipants who were switching txs after 12 weeks or whether they were at least made to wait a year before receiving their chosen tx. MS is quite clear that they muddied things so much that the long term follow-up results are uninterpretable - but did that also happen during the first year as well?

 

[Arnie Pye]

I understand this is a personal testimony - but I don't understand how a therapist can be "fantastic" and "caring" when they didn't help and didn't care enough to find out about ME.

I think I can understand this. If you've been treated like shit for decades because you are assumed to be attention-seeking, malingering, making stuff up etc, then to find a medical professional of any kind who appears to be actually listening, is polite, and appears to be empathetic can be a shock to the system and the patient is likely to feel pathetically grateful. Although not in the context of PACE this has happened to me. Eventually though, I remember being terribly deflated and depressed when I realised that this apparently kind, caring person would or could make no difference to my life and my health.

 

[Lucibee]

but are there any figures for people who tried more than one of the treatments?

If you read the accounts in the pdf (Link to the post with pdf of 19 public statements), participants refer to the trial as "the PACE trials" (plural), implying that they were given the expectation that they would be trying at least 2 treatments. This is not the impression you get from the papers though.

[update: numbers are here...

We do also have anecdotal accounts that APT stopped being offered to those coming back for their 2nd treatment.]

 

[Esther12]

Um, is it normal to have people switch arms in a trial that tests treatments?

It was something that they planned to do with PACE, and from reports from trial participants it seemed that this was an important part of how their convinced people to join the trial. Sounds like it was implemented in a very haphazard way though: "But it didn't really work for me, so per the Trial terms, they offered me Pacing instead, but didn't have the staff, so we talked about GET but I was too scared to try it."

I might be misremembering, but I thought that the PACE researchers tried to argue at some point that their LTFU data indicating people were more likely to chose CBT and GET at the end of the trial was a positive sign for CBT/GET? That never really made sense, and the role of staff in directing patients to particular treatments seemed important, but that some people were being told that they didn't have the staff for post-treatment APT makes that even more of a problem.

 

[arewenearlythereyet]

From another thread...





So far we have too many second-hand accounts. Why are people not coming forward?

It may be that some people don’t want their actual name put on a forum like this?

I had GET and I could argue that the way I was instructed to push through the pain I was experiencing was irresponsible. I can also state that my condition has worsened since having GET, my employer at the time was unhelpful and I had to battle UNUM to get insurance etc. It also ended with discrimination from my employer and my legal insurance refusing to cover me for the tribunal costs. It’s a good illustration of the institutional effects of PACE but does it show harms from GET? It’s possible that others are reticent like me unless they have a cast iron case?

I am now working somewhere else and it took a long time to find a job I could do that was local enough to manage. I’m not about to give that up so revealing my true name is not something I want to do in a public forum. It’s probably something I would be happy doing once retired and my son has gone to college and we know we have enough money to live off of etc ...but until then I need my job. I guess that’s selfish but for me it’s family first all the way.

I think when people do decide to make a statement using their name and almost give their blessing for their story to be told, it’s a big step and you want to be sure that you are not going to be misrepresented etc.

Perhaps there are a lot of people that feel the same as me ?

The other point I suppose is that forums like these only represent a small amount of people that could come forward.

 

[Esther12]

Just saw this one:

Author: Alison Hughes
Comment:
I was on a PACE trial in our area for a year and the pressure to say I was doing better at the end was huge. I was taken right back to doing nothing and then gradually got to the stage I was before the trial but had less crashes. However, my life had stopped, the limits they put on you were not realistic and as soon as I had a visitor or bad news or basic stress I was a mess again.
I am so lucky my husband supports me as I could never be taken seriously by the doctor let alone the Government, it would be impossible to work, I would be sacked within a week, my head is a mess and I would be useless. This article has made me feel less of a failure, thank you.

https://www.statnews.com/2016/09/21...e-pace-trial/comment-page-15/#comment-1240803

 

[Jonathan Edwards]

THE PRESSURE TO SAY I WAS DOING BETTER WAS HUGE.

And Cochrane assessed the likelihood of bias as low.

One of the things I learnt doing muticentre trials is that you have to assume all the people in the other centres have the intellectual rigour of the Marx Brothers (without the wit). I am minded of 'the party in the first part...

A Night at the Opera.

 

[Woolie]

Just saw this one:

Author: Alison Hughes
Comment:
I was on a PACE trial in our area for a year and the pressure to say I was doing better at the end was huge. I was taken right back to doing nothing and then gradually got to the stage I was before the trial but had less crashes. However, my life had stopped, the limits they put on you were not realistic and as soon as I had a visitor or bad news or basic stress I was a mess again.
I am so lucky my husband supports me as I could never be taken seriously by the doctor let alone the Government, it would be impossible to work, I would be sacked within a week, my head is a mess and I would be useless. This article has made me feel less of a failure, thank you.

https://www.statnews.com/2016/09/21...e-pace-trial/comment-page-15/#comment-1240803

This reads as though the person might have been in the APT/Adaptive Pacing Therapy arm (bolding mine).

 

[Lucibee]

This reads as though the person might have been in the APT/Adaptive Pacing Therapy arm (bolding mine).

Maybe someone should ask?

[ETA: In particular, when, where, which group?]

 

[Esther12]

This reads as though the person might have been in the APT/Adaptive Pacing Therapy arm (bolding mine).

Could be, but it also sounded to me like CBT and GET could be quite imposing with maintaining steady levels of activity to avoid 'boom and bust', etc. All these sorts of behavioural interventions seem controlling of people in a way that I think could feel restrictive.

Who knows? She could even be mistaken about having been in 'PACE'. I think that some clinics talked to patients about using 'PACE' interventions in a way that meant some people now vaguely think they were part of the trial when they were not, and it's always best to be a bit cautious with claims we see on the internet.

 

[Sly Saint]

A comment under the Hilda Bastian blog:

Lois Addy
February 9, 2019 at 12:14 pm


very interesting thankyou. It’s good to have ‘outsiders’ consider what’s happened and how it happened in a balanced way that considers the issues with an open mind.

I was on the Pace Trial allocated to cbt. I had Post extertional malaise before starting pace, BUT didnt’ understand that it existed nor that I had it until on the Trial.
I do remember them saying that if I wasn’t already involved in me/cfs groups pre trial not to join until after the trial, I can’t remember why, it’s so long ago, but I think something to do with trying to keep my knowledge level consistent through the trial? seemed reasonable to me, albeit somewhat inconvenient atthe time as I’d intended to join the local group around the same time. For me, I wasn’t even convinced I was unwell nor that me/cfs existed (despite having to work part time since 2001 because of it) right through til I went severe in 2013.
So I think one aspect that’s not been explored so much is the participant’s ignorance. I ended up on the trial cos my gp told me to google my symptoms and see what it most resembled and he’d refer me on that basis, I went back with well it seems to be this me/cfs but not sure, so he sent me to neurology to get known physical issues excluded, then I ended up at Trudie Chalder’s clinic at kings crying in her office cos I was desperate as it was preventing me from my ability to work and I could see myself homeless and penniless in pretty short order.
So to me, they said there wasn’t a magic bullet but they hoped they’d be able to help me do more by the end of it. But in reality I ended up doing far less, but it didn’t hurt so much symptomwise. And I was hugely disappionted.

What annoys me is the way that my data and that of the other participants was twisted to fit their narratives, I joined the trial because I thought well it may help others and if it doesn’t work they offered me the therapy of my choice afterwards (didn’t happen cos the pacing therapist was off sick) and it cut out the waiting list. So a mix of personal gain with a side of potentially helping others.

I don’t understand why the BMA opinion piece about latest report from the HRA about whether or not the trail protocols were changed correctly or not seems to think that following set procedures absolves the pace researchers from responsibility. it doesn’t. throughout history people have followed set procedures to do great evil. jsut cos it’s not illegal doesn’t mean it’s right. and THAT is something the entrenched researchers are refusing to recognise, the MORALITY of changing the criteria for recovery to lower than that for entry, is totally unsustainable as a position for research that purports to find ways to cure people.

 

[Goblinf]

Hello. I'm Lois/ Goblinff/ Goblinf, varients thereof. A PACE Trial participant on CBT arm at Kings under Trudi Chalder with a therapist called Brendon (can't remember his surname).

I found this thread by accident because what I've said is in it. So it seemed like a good idea to register and turn up in case there was anything anyone wanted to know.

Personally speaking I went on the Trial because it got me treatment quickest, I was offered the 'carrot' as that guy posted above said of an alternative treatment afterwards if the one I was allocated onto didn't work for me, and because it was a way of contributing to people who were also unwell with the illness.

To be totally clear, the carrot offer was OUTSIDE the Trial. After you had been signed off, you wouldn't have to go on a waiting list, the existing therapists for the Trial would have space for you to try one of the other arms if you felt it would help. As is noted above I was offered GET done in the APT style but I was too frightened of the potential effect on my ability to work. I didn't ask at the time whether this 'carrot' treatment would be data that the Unit would use for the Trial or otherwise, I didn't really care about the data so much, all I cared about was at first, getting my life back and at the end, keeping the little life I had retained. The internet existed yes, but not in the form it does today, or if it did, I wasn't looking at those bits of it, the information we have now wasn't so widely available. I'm not sure I was even a member of AFME or MEA back then. I do remember printing out the entirety of the Kings ME/CFS site for my parents to read and that's where I go my information about the illness primarily.

I was working at the time for Clifford Chance (global law firm) back office on the tax side, on a weekly contract and my boss (who is now a Trustee of The ME Trust, Philip Courtney) couldn't give me any help from CC as I wasn't on their payroll, but, very kindly made me go part time and gave me the time I needed for the Trial (what I didn't know at hte time was he'd been friends with Hannah Clifton for a very long time so knew I had me/cfs way before I understood myself). I was a chartered tax adviser dealing with personal tax, partnerships, trusts & estates on a contract basis and desperate to keep working. It was only in 2013 when I suddenly became severely unwell in a matter of weeks (about 2-3 were sudden with months before where I didn't realise it was looming and months afterwards when it just kept getting worse) that the 'tools' for trying to stabilise that I'd got from the PACE Trial failed me utterly. I spent the whole year in tears of terror.

I think it was in 2014 that possibly Tom Kindlon posted about on Facebook about a journalist wanting to talk to Pace Trial participants. If I had not been severe with absolutely no future ahead of me, I wouldn't have responded.

I had spend a decade NOT talking about my me/cfs - for most of my contracts I'd go for an interview, get the job but have to go to Rood Lane medical centre for a health check. Back in 2000 at Arthur Andersen (where I had a work based exhaustion collapse of health) they'd rated me a D I think (they usually only took A or B) but wanted me as an experienced hire. Since the Pace Trial in 2007 I'd not mentioned it to Rood Lane (different doctors each time, but Rood Lane seemed to have the market cornered in health checks for the accountancy firms/law firms/banks I worked for. The very last contract I did over the winter of 2011/2012 I'd not worked since 2009 because of the recession, and did tell Rood Lane about the ME/CFS and that I might not be able to last the 6 months without destabilising so maybe I shouldn't take the contract. Surprisingly he was quite sanguine about it and said he'd clear me anyway because I can work right now, and advised if I did struggle, to cut my hours or cut the contract, the firm would survive. In the event I did make it to the end of the contract but I think it was a slow decline to the crisis of 2013.

In any event, there was no point in my life up to me going severe in 2013 in which saying I had me/cfs to anyone outside immediate family & friends (and trusted recruitment agents I'd been working with for years) was going to happen. ME/CFS makes you unreliable at work. You lose your job, either you walk (stagger away) or you are let go. The tax world is small, I was relatively well known and needed to guard that reputation to get work. I'd seen people give informal ad hoc references over the phone critical of perfectly good people who then didn't get the job, you can't control what random managers etc say to their mates, only what HR says in formal references.

However by 2013 all that was gone and I was facing the abyss of disconnect of not having a clue who I was and couldn't face the idea of the next hour never mind a week, month or year ahead. So in 2014 I thought yeah I'll talk to a journalist why bother hiding it any more it can't be hidden, so I talked to David Tuller for a whole weekend, he also talked to my family.

I think it's fair to say I had NO idea at all of the issues David was raising as problems with the Trial, I had no conception of how the Trial had affected treatment and attitudes globally, all I knew was that what I was reading in the AFME/MEA magazines and online articles about PACE Trial results didn't reflect my experiences at all. I assumed I was an oddity or outlier somewhere.

I had also totally forgotten how angry and let down I felt by the Kings team (my family remembered) - they didn't give me the promised medical review, and I tried so damn hard to do everything they suggested but ended up doing less albeit with less unpleasant symptoms.

When I realised what David was saying, and from 2014/2015 began to be online more as my brain returned, I thought about it and decided to be open about my experiences of the Trial, because I had nothing to lose personally, I wasn't going to work ever again in that field, and my nebulous ideas of the Trial having some public good had turned out to be mistaken.

I think David was originally thinking of writing a book with the experiences/information of the PACE Trial participants he met and has met since, but I think (and I may be wrong) that in a sense things have moved on since. He started the investigation into the PACE Trial but has found so much else wrong stemming from it and other things that there's a different picture for him. I am paraphrasing there some half remembered talking with him on messenger since so apologies if I'm being inaccurate.

Anyway, I've no idea what I've said in the past/ missed out/ got wrong/ forgotten/ been flakey on, and the house is currently in a state of disarray as I try to organise the Disabled Facilities Grant and funds from family to make downstairs wheel friendly so I have no real idea where any of the paperwork is, but am happy to answer whatever questions you have to the extent of my ability.

 

[ME/CFS Skeptic]

Thanks for sharing your thoughts and experiences @Goblinf !

 

[Barry]

From @Goblinf's comments posted by @Sly Saint:

I ended up on the trial cos my gp told me to google my symptoms and see what it most resembled and he’d refer me on that basis

... good grief!

I don’t understand why the BMA opinion piece about latest report from the HRA about whether or not the trail protocols were changed correctly or not seems to think that following set procedures absolves the pace researchers from responsibility. it doesn’t. throughout history people have followed set procedures to do great evil. jsut cos it’s not illegal doesn’t mean it’s right. and THAT is something the entrenched researchers are refusing to recognise, the MORALITY of changing the criteria for recovery to lower than that for entry, is totally unsustainable as a position for research that purports to find ways to cure people.

Spot on.

 

[rvallee]

I was offered the 'carrot' as that guy posted above said of an alternative treatment afterwards if the one I was allocated onto didn't work for me

This has been hinted at several times and it's good to have confirmation. I wonder how many participants were offered that. It's even in the "justification" for the lack of sustained effect at long-term follow-up that many of those participants probably had one of the other treatments, which obviously disqualifies any interpretation of the results as fanciful.

Which all leads to the obvious question: how can there be long-term follow-up if many participants ended up doing more than one of the treatments? How can there be any follow-up at all? One of the reasons why some of the trial data are being kept hidden is that there allegedly are plans for future publications, something that is obviously irrelevant given that there is no meaningful longer-term follow-up possible given this.

This is just one of many fatal errors in the trial and it probably deserves more attention.