FINE trial patient booklet 29/04/05 Pauline Powell

[dave30th]

There was a slide show in which Wearden described the illness as like very bad jet lag.

 

[Sam Carter]

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 I've had a look at Wayback Machine to see if any of the other documents had been archived, but although some were, the links no longer work (as @Esther12 and others noted further back in this thread).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

Sorry @Lucibee, I can't do any better than Michiel and others further back in the thread.

The only documents I can access are the Patient PR Manual and the Physiological Explanation Of Symptoms For CFS Patients.

The Internet Archive has indexed the others but not saved them properly. Very frustrating.

 

[ME/CFS Skeptic]

There is also this document dated 22/07/04 which states:

"There is no disease - you have a right to full health. This is a good news diagnosis. Carefully built up exercise can reverse the condition. Go for 100% recovery."​

Are there other things that are missing, and that should be uploaded?

 

[Lucibee]

There is also this document dated 22/07/04 which states:

"There is no disease - you have a right to full health. This is a good news diagnosis. Carefully built up exercise can reverse the condition. Go for 100% recovery."
Are there other things that are missing, and that should be uploaded?

Yes. Just those two are accessible now. I suspect the 2004 doc is the early version of the longer patient PR manual.

There were also docs on the supportive listening arm of the trial and the training docs etc - but the training schedule at least was pretty well described in the main trial paper.

@rvallee had commented about seeing a page of the early version on Twitter a few days ago. It now seems that this was amongst the files of someone who was likely on the FINE trial itself (and was harmed by it).

I think it's important because it clearly describes the whole "deconditioning theory" in quite a lot of detail, which I haven't really seen before elsewhere.

And bits of the theory do now seem to be popping up in Long Covid clinics.

 

[Sean]

Might be worth archiving important documents on archive.today too. They don't delete anything.

https://en.wikipedia.org/wiki/Archive.today

And of course, keeping copies on your own computer. Basic text, plus a few images, doesn't take up much space.

 

[Lucibee]

Just adding another link I found to the CFS clinic handbook that was produced by Powell for the Liverpool CFS clinic. It seems pretty similar to the FINE trial manual (well I guess it would be!).
It looks like @Esther12 put it there.

https://issuu.com/estherxii/docs/p_powell__liverpool_cfs_centre_patient_handout

 

[InitialConditions]

Just adding another link I found to the CFS clinic handbook that was produced by Powell for the Liverpool CFS clinic. It seems pretty similar to the FINE trial manual (well I guess it would be!).
It looks like @Esther12 put it there.

https://issuu.com/estherxii/docs/p_powell__liverpool_cfs_centre_patient_handout

Does anyone have a copy of this document? The above link won't let me download.

 

[Dolphin]

Does anyone have a copy of this document? The above link won't let me download.

 

[InitialConditions]

Thanks, but I've got that one, @Dolphin, I'm looking for the Liverpool CFS service document mentioned in the previous few posts.

 

[Dolphin]

Thanks, but I've got that one, @Dolphin, I'm looking for the Liverpool CFS service document mentioned in the previous few posts.

https://1drv.ms/b/s!AoHfldspRkWU0osY2PKTtb_kb59YTA?e=7zaWOR

 

[InitialConditions]

https://1drv.ms/b/s!AoHfldspRkWU0osY2PKTtb_kb59YTA?e=7zaWOR

Thank you.

 

[Arvo]

Thank you from me too @Dolphin. I had a screenshot of the first page in my files, hunting down the full document was on my To Do list. Happy to have it now.