Blog: The PACE trial - a complaint.

A blog about personal experience of PACE recommended 'treatments' published earlier this year.

https://mookpixie-chronicills.blogspot.com/2018/03/the-pace-trial-complaint.html

 

A greatly written account from an ME patient about the consequences of the NICE guidelines and the PACE trial. It's infuriating to read, and all very recognisable. How many more patients must suffer??

I can't help but come back to the line from the Hippocratic Oath, “I will utterly reject harm and mischief,” and wonder how those responsible for the PACE trial have been allowed to peddle their lies and mischief for so long, causing great harms to countless people like myself. It is scandalous that they have been able to get away with such behaviour, and indeed have been rewarded for it by the establishment. Lives like my own have been ruined by this travesty. Severely ill people have been maligned and ridiculed by a profession meant to help them. Many sufferers have taken their lives, unable to cope with the debilitating nature of our illness coupled with the devastating affect of being disbelieved about the severity of their suffering. It needs to stop and it is within your power to help make that happen. The PACE trial has been discredited for changing outcomes and fiddling with results, but yet still the findings are influencing the way patients are treated, not just in this country but also around the world.

 

A great blog post, but i do wish people would stop with the factual error of stating that the NICE guideline was based on the results of the PACE trial. It was not. It might be pedantic when it was based on the same treatments from the same authors, but NICE came out in 2007, PACE not till 4yrs later. Unfortunately, although there is much hope for the guideline review, this will be the first NICE guideline review that will take PACE into account, so IMO we'll be lucky if the next review isnt worse than the first.

 

You are right, and wrong. PACE did heavily influence the review of the NICE guidelines in 2011
https://www.s4me.info/threads/perso...in-chief-of-the-lancet.3868/page-9#post-91282

 

Thanks for that @Sly Saint. Happy to be corrected. But I meant the first 'proper'/full review.
I thought the decision in 2011 was that they looked at the issue & decided than no 'proper' review was needed- ie PACE influenced them to determine that no review needed to be made, and to keep them in a category, (I forget what the word used was), something indicating a holding pattern. Am i mistaken about that then?

Edited for typos & clarity

 

I think it is probably fair to say the 2007 review was influenced by the PACE trial. By then PACE was under way and the results had been reliably arranged. The NICE committee was very likely informed that these results were going according to plan, even if recruitment was annoyingly slow. And since in 2011 the result came out very nicely in print the guidelines were informed by that in 2012 - because they would have had to change if the results had mysteriously gone the wrong way.

 

Was 2007 a 'review'? I thought that's when they were first developed ie the very first guideline that NICE did for CFS/ME? Am i mistaken?

I wasnt saying that PACE didnt influence things, or that NICE wasn't privately told that it would back up what it was planning to recommend. Only that statements saying that the 2007 NICE guideline was based on the results of the PACE trial isn't strictly accurate, & i think strict accuracy is good.

The way I often see it presented & seemingly thought of by patients/advocates who are newer (ie post 2007) to the field, is that PACE was published, which led to NICE developing a guideline recommending CBT/GET therapies & that's not chronologically accurate afaik.

It prob doesnt matter anyway. I don't want to derail the thread on what was a very well written blog post/complaint from someone who obviously worked really hard on it & very sick. All power to them, i just being pedantic & nit picky i should crawl back under my rock

 

In my dealings with Healthwise, I found they rejected PACE yet clung to GET/CBT in large part because of NICE.

 

The original article sounds about right to my personal experience. It is essential things like this are written, heard and the what it feels like to have this body and what not enough rest and too much exertion does and feels like as a life is understood.

When I see the video of Clare Gerada with a patient (shared by the MEA a few times on their social media) slyly reply that 'of course exercise and pushing through won't hurt you' that to me feels like that is what influenced by GP at the time. Who contradicted what the consultant they'd sent me off to for a diagnosis had told me (GP had been asked to investigate what caused something else, and there is a long story short of one GP did want to investigate then got switched to another who basically said 'you've got CFS'), told me they don't send to consultant for anything other than diagnosis - even though I was paying it for myself - and so it left me in a gap.

The living hell of trying to work and live under this ideology is about right. And needs to be acknowledged. I want others out there in the world to imagine your body screaming with illness whilst everyone around you gives less than no acknowledgement, adjustment or sympathy. That is the cruellest thing. Making us destroy our bodies

It wasn't until recent times that I read the 2007 guidelines and realised the psychosomatic 'exercise avoidance anxiety' tosh that was behind it.

So I thought it was ONLY as bad for a decade as us being a huge human experiment dumping us in a bucket as the area they no longer treat (all chronic illness chucked in with no investigation). Immoral as that would have been. Imagine my shock when you realise they aren't even writing down the reality of what it did to people. And telling lies about them in their notes to make the reality match what someone upstairs wanted it to be. Lies that wreck lives, rights, self-will of individuals. On top of having wrecked their bodies and their relationship with everyone around them.

I assumed when the GP said you could go to the gym (and eventually when I relapse said 'you were doing too much' they played a huge part in allowing and creating the world around me) and I said is that OK and she replied 'yes it won't do you harm' that answer was based on science and medicine of my condition. At the very least. Safety-first.

That is not an unreasonable assumption. As is candour - and the 2007 was ALL hidden, pushing of CBT was under false guises 'to cope with other people' (I didn't go). Lies, lies and more lies. The only thing they had to check on any treatment was SAFETY and that would be the main question they were getting. Who on earth woudl have run a trial back then on 'lets try counterintuitive' without checking safety and impact. It absolutely sits at the edge and over the line of the hippocratic oath and throwing it out the window.

To me all this is bigger than anyone believing in 'psychosomatic' back then. This mind-body tosh lines only came recently - I think to try and assert either their next part or cover up their nonsense. And yes I've named one name, because back then I don't think most would have read the 2007 and believed it, most would have thought the psychosomatic stuff was nonsense. They pushed a treatment and it was the individual at the top of their own profession giving out pathways and company lines that proliferated it. It's a distraction for the few back then, most it was hierarchy, assumption, following orders and lack of information.

I think now they cling to this only because noone likes to admit they were wrong or face the outcomes of what they played a part in, so these things are cosy comfort blankets. And because of the deliberate stigma-making campaign allowing these now physically damaged 'lots of work, just when we've no resource' people saying we don't deserve in the rationing lottery. And there is where it butts up agains the politics - was this about 'no longer doing chronic illness in the NHS' (which is why I find it unforgivable it was done this way through dodgy guidelines as it also affected access to private) then making us all look like awful people who brought it on ourselves and now we are such wrecks people assume 'there is a story' that has nothing to do with healthcare (if you know what I mean)