FINE trial patient booklet 29/04/05 Pauline Powell

https://web.archive.org/web/20140811161130/http://www.fine-trial.net/downloads/Patient PR Manual ver9 Apr05.pdf

I saw that this was off-line, but found an archived version so thought I'd post it here for anyone googling for it. It's a pretty annoying document, and those new to looking at CFS research might be interested to read through.

The FINE trial reported null results for its primary outcome, but the FINE researchers went on to produce guidance for RCGP training on ME/CFS despite this, largely just repeating their own failed approach, combined with that seen from CBT/GET in the PACE trial. Tuller writes about this training here: http://www.virology.ws/2019/01/28/t...roubling-claim-in-parliamentary-debate-on-me/

Tuller's first blog on FINE:

http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/

I think that FINE is the second largest trial on the Cochrane Exercise review, and Caroline Struther's complaint to Cochrane says this about it:

http://www.virology.ws/2019/02/20/t...-update-and-caroline-struthers-latest-letter/

 

A bit of a non sequitur, but I recall being so disappointed at not being assigned to an active treatment arm when participating in the FINE trial. How naive I was. In retrospect I was better off being in a 'no treatment' control. (Although then living in Sheffield I was recruited in a final push when they were struggling to find enough subjects and expanded their catchment area.)

At the time I was so desperate for any treatment at all, I did not care what form it took, I was willing to sign up for any research trial going. Perhaps it is sad that now the reverse applies, I am extremely suspicious of any research and would want chapter and verse before even considering signing up. The BPSers have a lot to answer for and one wonders if this may have introduced an inevitable sampling bias to any new research.

 

I find that the quotes by Caroline Struther's ("every exercise is strengthening your body”, “there is no disease” etc.) are not in this document, but in this one:
https://web.archive.org/web/2014081...al.net/downloads/CFS patient presentation.pdf

Can someone give some background what this document is? David Tuller explained it was a 2004 presentation about pragmatic rehabilitation, that was available on the FINE website. Was it something that patients read or were it instructions for therapists?

 

Every time I open a FIEN document a new annoying thing pops out, eg:

"Read the patient manual.
Recovery depends on
1. Your ability to gradually build up exercise.
2. Your understanding of what predisposes and perpetuates CFS."

So you'd really better accept what they claim predisposes and perpetuates CFS!

It looks like it's a guide for a presentation to patients? It's not entirely clear. A shame the FINE site is down.

 

The amount of made-up BS in the patient presentation is too damn high.

"Rousing reassurance" consists of inventing a fictitious explanation to compensate a hypochondriac state. This is the basis of NHS GP training. Outrageous. Forget body clocks, the problem here is a fatally broken moral compass. You can't just make up an explanation and build an entire system of guidelines and services around this fictitious explanations. This is completely insane.

 

Every time I open a FINE document...

I was just getting annoyed at this bit:

"you cannot relapse because you now know how to combat it.

You understand what happened to your body during CFS and why a controlled graduated activity plan and regular night-only sleep pattern was necessary.

You will know what to do in future during times of great stress or serious physical illness, when you may feel symptoms similar to those of CFS.

Your understanding of CFS is your ultimate weapon against it and prevents any possibility of relapse."

I came here to see if anyone had posted this document, and saw that I had after finding another annoying bit previously and then forgot all about it. My brain is actively rejecting PACE/FINE info at this point and I now post things just in the hope that other people will remember them when/if they're useful!

I also found some notes indicating that this FINE document was pretty irritating:

http://www.fine-trial.net/downloads/PR induction and training (all).pdf

Unfortunately, the archive link seems broken:

https://web.archive.org/web/2016070...downloads/PR induction and training (all).pdf

Anyone else able to access it?

 

Only found these archived presentation slides:
https://www.yumpu.com/en/document/view/37474074/pr-induction-and-training-all

It's "A brief introduction to chronic fatigue syndrome" for the "Fine trial therapists induction day"

And an old thread on PR
https://forums.phoenixrising.me/threads/fine-trial-nurse-training-materials.26535/

@Dolphin

 

That seems to be what it was meant for -- note how "they" is used at one point:

Two options? The whole document looks to me like a parody from the beginning:

Some pages later:

Of course, "another important factor is PERSONALITY STYLE".

 

It does make you wonder what illness the people had who were being seen. It seems to bear no resemblance to anything we have. " Use exercise at the time of maximum fatigue". For Heaven's sake.

 

Yep. A sure prescription for a trip to A&E for most of us. I literally cannot be trusted not to injure myself with the most innocuous of household items when I start to hit a slump. Even the b@@dy walls become a hazzard!

 

Also doing a puzzle -

Have they ever met an ME patient? There you are losing the ability to speak, but sure yeah....Fill in an application form for MENSA while you're at it.

 

FFS!! how could they still be getting away with making claims like that.

 

I suppose that at times of maximum fatigue one could practise rolling one's eyes. Would that count?

 

Its also amazing that they seem to have never heard of neurological fatigue from illnesses like brain trauma, MS, stroke etc.

It always baffles me when any medical person acts as if they don't know about neurological fatigue as if its some mystery yet to be described in medicine.

Yet they have a cohort sitting in front of them presumably whereby they probably don't care or don't know what each individual has had ruled in or ruled out, what they may have yet to be diagnosed, what we don't know how to test for etc etc.

And here they are making bold unsubstantiated claims of causation and recovery based on a null trial based on zero prior supporting evidence and then zero supporting evidence from after the trial.

Unbefuckinglievable!!

I really wonder at what point anyone using this rhetoric in practice has to be held responsible themselves without a string of disclaimers back to the original culprits who seem to be able to get away with claiming evidence based treatments yet have zero supporting evidence to back their claims.

 

At the time of maximum fatigue I'm barely conscious.

 

I can't describe how I feel at maximum fatigue for the simple reason that I know it is passing when I start to think again. I don't think I am unconscious, but I am not consciously aware of my surroundings. It is not particularly unpleasant for the same reason.

Of course, times of maximum pain - I do have words for that ....

 

I am not sure what would happen if I tried to stand up. I think I would succeed but could risk an immediate fall due to poor orthostatic compensation and low strength. I certainly would not have good control over my body. I would (I think) adjust after some time but feel rather unwell, and after the activity crash even harder. They think I should be going jogging.

This was clearly written by someone who thinks they have some idea about this illness but is actually so out of touch with the subject matter that they don't realize how out of touch they are. The blind wanting to explain colors to the seeing.

 

The nonsense of such a statement is that its neither good news or bad news it just leaves an unknown which actually is potentially bad news as much as "good news".

Imagine if people were dropping dead from coronavirus and we didn't know how to test for it. Would that be good news as we didn't know the cause?

When people were dying from AIDS and they were yet to discover HIV was that good news?

Before we had MRIs to diagnose MS was that good news?

When we didn't know what epilepsy was and had no treatment for it was that good news?

We don't have a test for autism, is that good news?

Fucking idiots!!!