FINE trial patient booklet 29/04/05 Pauline Powell

large donner said:
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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Yes! This.

They absolutely should be held personally accountable. They are qualified health professionals in their own right. That's why they're doing the job. That's why they they get paid.

Often you might find a nurse giving a particular type of injection or treatment. Not because the treatment itself warrants a nurse, but because if things go wrong they need someone qualified to quickly realize it's going south and be able to do something it.

So, if they are administering a treatment, they should be able to see when it isn't going to plan and call a halt, or adjust the treatment plan.

FINE demonstrated how the nurses allowed the brainwashing to override their own critical judgement. If they had sufficient training to deliver the course then they should have had sufficient experience to realize the treatment wasn't appropriate and report that back at the very least. Not take it out in the patients.

So, in my opinion, each therapist, nurse or doctor should be individually accountable.
 
Invisible Woman said:
So, in my opinion, each therapist, nurse or doctor should be individually accountable.
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Yes this was my line of thinking. Is it about time we issued notices on the worst individual culprits and organisations practising this crap. By that I mean the people perhaps just below the BPS crowd?

Also when we come across an individual GP maybe have a standard letter in place making them aware of the major flaws in the model.

For a GP it wouldn't have to be too heavy handed but the purpose would be just to break the link between the BPS crowd and the layers underneath them who have never actually sat and looked at the evidence.

I really think it's time that people became aware that they could be held individually responsible for failings in the future if they have previously been supplied with evidence.

Would there be any benefit of a combined effort from the best ME charities basically pre warning the royal college of GPs for example of the part they are being made to play in all of this.

How could any GP reading this thread about the FINE trial not have alarm bells going of in their head when the basic evidence is put in front of them?
 
large donner said:
For a GP it wouldn't have to be too heavy handed but the purpose would be just to break the link between the BPS crowd and the layers underneath them who have never actually sat and looked at the evidence.

I really think it's time that people became aware that they could be held individually responsible for failings in the future if they have previously been supplied with evidence.
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Absolutely. Not only to make them aware that there are issues with the theory behind the BPS treatment, but also to remove any deniability and leave a paper trail while doing so.

The only worry I have is that some patients are very vulnerable. Their GPs are the gatekeeper to support services and benefits.

If we could somehow have a central service that sent out such letters using signature required service that would help take the vulnerable individual out of the firing line. Especially, if we took the opportunity to send a letter not only to every GP in that practice but in that CCG.
 
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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well, in that or another presentation, CFS was described as comparable to suffering from really bad jet lag--like, really bad.
 
From the induction training pdf:

Please each write for me, individually, a 500-word position piece entitled “Pragmatic Rehabilitation for CFS/ME: what it is and why it works.” Please email to me and I will return it to you with comments. Please reference fully (references don’t count towards word-limit).
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Talk about begging the question...
 
Sean said:
I have never experienced jet lag, but it would have to be pretty bad to compare to ME.

By which I mean fucking horrendous.
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I have had jet lag arrived back in London at 8am and couldn’t stay awake to adapt to local time had to go to bed at 12 noon. I was very sleepy, I didn’t have any body pain or flu like symptoms. Nothing like ME. I possibly had a headache when I woke up at 8pm and was a bit dehydrated.
 
A point has occurred to me about that laughable "use exercise of maximum fatigue". Apologies for returning to the subject but it is probably sensible to pre-empt the obvious purported rebuttal which might be anticipated.

It might be said that we are all, or mostly, long term severe moderate to severe sufferers. The guidance is not meant for the likes of us but for new, mild sufferers. The difficulty that this argument faces is that even when suffering with what is known as "mild" illness the periods of "maximum fatigue" may be more severe than when the condition has more or less stabilised at moderate or severe, with only a gradual further loss of capacity. The "maximum fatigue" passes without any clear effort, other than bed rest, and reasonable normality is resumed, with only a loss of top-end function.

The "mildly" ill may have many days practically comatose, reluctant to get out of bed in case they cannot get back in. This could have been, and probably was, pointed out in 1989. They wouldn't have listened. It did not fit the narrative.

It seems that there was never any serious attempt to distinguish such cases from those who might benefit from exercise at time of maximum fatigue, if, indeed, anyone ever did.
 
chrisb said:
It seems that there was never any serious attempt to distinguish such cases from those who might benefit from exercise at time of maximum fatigue, if, indeed, anyone ever did.
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Exactly. That lack of effort to distinguish between patients who might benefit and those who do not demonstrates the cavalier attitude to the potential for harm to be caused.

Also, unless I'm mistaken, drugs trials not only look at harms but at responders vs non responders and this analysis gives more in-depth information into the disease in question and how the drug actually works. Psych trials can't be bothered & they get away with it.

There is a good reason for the BPS mob not to look at this information - ignoring it gives a false economy of scale for treatment and inflates perceived demand for their services. I'm not saying this was their motive, just that it could be seen that way.

NICE are supposed to guard against public funds being squandered this way.

The system to date has been either far too cozy or is simply broken.
 
Long time ago I heard the 'fatigue' with ME/CFS described as akin to what a marathon runner experiences when they "hit the wall". Except pwME experience it far, far more frequently, triggered by far, far lower levels of everyday activity. This seemed to fit with what I observed in my wife. It also seems to fit with the suggestions that pwME switch from aerobic to anaerobic respiration much earlier than healthy people do.
 
Purely from my personal point of view -

Barry said:
Long time ago I heard the 'fatigue' with ME/CFS described as akin to what a marathon runner experiences when they "hit the wall".
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Except it isn't. Unless you are actually suffering from fatigue.

I have never run a marathon. I have participated in 24 hour sports marathons with about a 2.5 mile walk there and another 2.5 miles back. I was a fit healthy teen. At the end I was knackered, probably a bit dehydrated and I could barely lift my legs. I didn't feel great but I didn't feel ill. A square meal, shower and a couple of hours sleep and off I went to a party.

From my perspective the attempts to describe how fatigued we feel will always fail because fatigue and feeling extremely ill are not the same.

You know when they ask that "when did you stop beating your wife?" as a leading question ? Well this to me is like being asked to describe how good it feels to stop beating up your wife.....
 
Invisible Woman said:
From my perspective the attempts to describe how fatigued we feel will always fail because fatigue and feeling extremely ill are not the same.
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This.
I've just given up trying to go on & on & on, to people that feeling fatigue, no matter how profound that fatigue is, is not the same as feeling ill. They cant hear it, I've given up. And now vast numbers of patients are using the f word too... it's like the battle is lost. Despite the fact that for about 15yrs the people close to me knew it wasn't fatigue, used to even correct others... now they ask me 'how's the fatigue today'... it's like the drip drip drip of CF & CFS terminology everywhere has hypnotised them over the last few yrs, & now when I correct them they say 'yes I know but'.... if they *knew* they wouldn't say it would they.

I do understand though that for some patients with this dx who fit the ICC/CCC would still say the
f-word describes their experience well. <shrugs>
 
Hitting the wall is when runners suddenly and without warning can no longer move, though the term may have been loosened in speech over the years. Some runners never experience it.

It has always sounded very like the sudden stops I have which feel as if I have run out of battery. A few minutes then I can go again.

Not my only symptom but frequent.
 
Just wondering... I've had a look at Wayback Machine to see if any of the other documents had been archived, but although some were, the links no longer work (as @Esther12 and others noted further back in this thread).

They're here, if anyone's interested: https://web.archive.org/web/*/http://www.fine-trial.net/downloads/* but those archived in 2016 seem to be borked.

@Sam Carter - did you have any better luck with these? You seem to be mentioned in the FINE trial wiki... https://me-pedia.org/wiki/FINE_trial
 
Lucibee said:
Just wondering... I've had a look at Wayback Machine to see if any of the other documents had been archived, but although some were, the links no longer work (as @Esther12 and others noted further back in this thread).

They're here, if anyone's interested: https://web.archive.org/web/*/http://www.fine-trial.net/downloads/* but those archived in 2016 seem to be borked.

@Sam Carter - did you have any better luck with these? You seem to be mentioned in the FINE trial wiki... https://me-pedia.org/wiki/FINE_trial
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Is this the patient booklet that you mean or were there others?

https://web.archive.org/web/2014081...et/downloads/Patient PR Manual ver9 Apr05.pdf
 
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