FINE trial patient booklet 29/04/05 Pauline Powell

Esther12

Esther12

Senior Member (Voting Rights)
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I saw that this was off-line, but found an archived version so thought I'd post it here for anyone googling for it.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:

It seems that such problems did not just afflict PACE, the largest study included in the Larun review. For example, the second largest trial, FINE, made use of what was described as “Rousing Reassurance”. This involved telling patients things such as “every exercise is strengthening your body”, “there is no disease” and “from the moment you walk out of this room your recovery is beginning”.

As well as potentially biasing participants’ self-report outcomes, such reassurance also seems likely to affect how staff viewed participants. There are indications that this has happened, such as a paper from the FINE trial which quotes a supervisor saying: “There have been one or two times where I have been worried because they have got angry at the patients…that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over… there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know ,“The bastards don’t want to get better””

By promoting unduly positive views of the quality of research like PACE, and the benefits of exercise therapy for CFS patients, Cochrane risks playing a role in biasing the way society responds to an entire patient population.
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http://www.virology.ws/2019/02/20/t...-update-and-caroline-struthers-latest-letter/
 
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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?
 
Michiel Tack said:
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/20140811161130/http://www.fine-trial.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?
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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.
 
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Michiel Tack said:
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/20140811161130/http://www.fine-trial.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?
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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.
 
Esther12 said:
Every time I open a FINE 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.
Click to expand...

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?
 
Esther12 said:
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/20160702044337/http://www.fine-trial.net/downloads/PR induction and training (all).pdf

Anyone else able to access it?
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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
 
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Attachments

Michiel Tack said:
https://web.archive.org/web/20140811161130/http://www.fine-trial.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?
Click to expand...

Esther12 said:
It looks like it's a guide for a presentation to patients? It's not entirely clear.
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That seems to be what it was meant for -- note how "they" is used at one point:

Explore sleep pattern. If they sleep during the day there are two options.

Stop daytime sleep.
Using exercise at the time of maximum fatigue
Using distraction techniques Eg. Puzzles, pottering around the house, go outside, sit in the fresh air and daylight.
Being overactive in the morning means you’re more likely to want to sleep in the afternoon.
Spread activities over the whole day
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Two options? The whole document looks to me like a parody from the beginning:

Researchers were looking for signs of :
Persistent virus
Disease
Damage
Chemical imbalance

The good news is that they did not find any evidence of any of these.
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However, they did find that in patients with CFS there are fewer powerhouses in the muscles.

These powerhouses are called mitochondria, which you don’t need to remember.

What would be useful for you to understand is that these powerhouses are the tiny parts of the cell that produce energy.
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There is reduced energy metabolism in muscles. It’s as though muscles have a slightly flat battery.

It’s difficult for CFS patients to be as physically active for as long.

This is a very physical condition.

But, it is reversible.
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Some pages later:

THE FIRST SOURCE OF ABNORMAL FATIGUE IN CFS COMES FROM DISTURBED SLEEP & FATIGUE RHYTHMS AND WITH THE OTHER RHYTHMS AFFECTED, IT IS DIFFICULT TO MAINTAIN NORMAL DAILY ROUTINE ACTIVITIES
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This deconditioning is 2nd SOURCE OF FATIGUE in CFS (DRAW ARROW) and causes other intense symptoms: dizziness, palpitations, excessive sweating, and nausea.

Also, muscles unaccustomed to regular exercise are predisposed to muscle ache, pain, stiffness and swelling 24 to 48 hrs afterwards. This is called Delayed Onset Muscle Soreness (DOMS).
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I haven’t got a problem with my body clock. ( Put hand over ‘body clock’ ) However, if I hadn’t been exercising regularly and then did a workout I would experience this DOMS: I would have muscle aches, stiffness and maybe feel fluey 24-48 hours afterwards.
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It’s the same for CFS patients. If the CFS patient does anything over and above their usual activities they will experience DOMS and the symptoms of deconditioning in addition to the abnormal fatigue from the body clock.
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Of course, "another important factor is PERSONALITY STYLE".

Patients who get CFS tend to be doers, achievers, conscientious, good listeners, have many commitments and don’t like being ill.
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These sort of people may be under pressure from others: work/family commitments or themselves to return to previous commitmentstoo soon. If they return before :

1.Recovering from illness.
2.Resynchronising body rhythms.
3.Regaining full fitness.

they will be symptomatic.

To cope with the challenge of work / previous commitments there will be increased nervous system arousal and adrenaline. This causes more symptoms: dizziness, fatigue, muscle ache
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chrisb said:
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.
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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!
 
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.

Researchers were looking for signs of :
Persistent virus
Disease
Damage
Chemical imbalance

The good news is that they did not find any evidence of any of these.
Click to expand...

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.
 
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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.
 
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Researchers were looking for signs of :
Persistent virus
Disease
Damage
Chemical imbalance

The good news is that they did not find any evidence of any of these.
Click to expand...

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!!!
 
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