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Contribute Evidence for NICE consultation

Messages
15,786
I looked a bit into NICE evidence for GET some time ago, and here's my notes:

Main: https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-196524109

Evidence: https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-appendix-1-196524110
Includes validity scores

CBT
p54-56
Deale 1997 & Followup, Lloyd 1993, Sharpe 1998, Prins 2001, Whitehead 2002, Cox 2002 x2, Friedberg 1994, Taylor 2004

GET
p57-59
Fulcher 1997 (1++) - 66 patients, Oxford, 2.7 years ill, 12 weeks GET v flexibility, GET 50% max heart rate
Moss-Morris 2005 (1+) - 49 patients, Fukuda, 12 weeks CBT/GET v SMC, GET group 2.26 years ill & control group 5 years ill, P-values > 0.01
Powell 2001 (1++) - 148 patients, Oxford, 48 months ill, 3 types of GET + 1 control
Powell 2004 (1++) - 2 year followup - controls had crossed-over, no longer controlled?
Wallman 2004 (1-) - 61 patients, Fukuda, unknown illness duration, GET + Pacing v controls, 6 with MDD, reduced exercise if relapse, objective outcomes compared within groups instead of with controls
Wearden 1998 (1++) - 136 patients, Oxford, 28 months ill, fluoxetine or HR-based GET, 40 drop outs with 11 due to adverse events

NICE GET comments: http://forums.phoenixrising.me/inde...-a-rct-burgess-et-al.14222/page-2#post-235243

Data extraction tables for CBT/GET
p275-317

Randomized Controlled Trials (includes objectivity)
p437-439

Controlled Trials (includes objectivity)
p440-441

Discussion & Comments: http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/
Comments: http://forums.phoenixrising.me/inde...tes-to-michael-rawlins-chairman-of-nice.2479/
Comments: http://forums.phoenixrising.me/inde...sion-margaret-williams-31st-august-2010.6090/
Comments: http://forums.phoenixrising.me/inde...ate-nice-cfs-me-evidence-base-laid-bare.7071/
Comments: http://www.angliameaction.org.uk/docs/nice-rcts.pdf
Comments: http://www.angliameaction.org.uk/NICEJRdocs/Neil_Abbot_MERUK_WS.pdf

Do Not Do: At and linked under http://www.nice.org.uk/donotdo/mono...tigue-syndromemyalgic-encephalomyelitis-cfsme

Validity Score: 0-20
"Only one trial used a sample size calculation" yet many are "good" for that in table p437
 
Messages
2,125
(in terms of being off the static list)
I don't think you need to worry about that too much...............they are proposing ME/CFS be removed from the static list because of 'upcoming research' where they cite FITNET as an example..........and we have seen that what EC wants, EC gets.
If ultimately they refuse to review the guidelines they will use removal from the static list as a means of 'showing goodwill/that they are listening to patients etc'. This will in turn be heralded by AfME as a 'victory' and it'll be back to 'business as usual'.......
(at least that is my prediction:cautious:).
 

Cinders66

Senior Member
Messages
494
I think CDC dropped CBT & GET recommendations because of concerns of how Oxford based research papers could be assumed to apply to the more accepted definitions of ME/CFS? Isn't the uk problem the contentment with a broad umbrella and then, as AFME woukd say there is evidence to support that management interventions aid some under that umbrella? If NICE were forced to recognise that Oxford fatigue is likely very different to illness defined by pain or immune symptoms or PEM etc and that Oxford based research should be ignored then wouldn't the evidence base supporting GET be poor as the Americans found? How come despite the PACE trial - largest ever trial/supposed gold standard and spin results etc - the Americans seem unimpressed but NICE unmoved?
 
Messages
2,125
I can't remember the reason we don't think the Adaptive Pacing in PACE resembles our normal pacing. Too structured?
See page 5 on this
http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787

"
The PACE
trial APT manual, however, describes an exten-
sive Occupational Therapy intervention that
includes pacing, but also encompasses relaxa-
tion techniques, sleep management, body
mechanics, ergonomics, problem-solving and
advice for carers (Cox et al, 2004). It is this
wide-ranging intervention devised for PACE,
Adaptive Pacing Therapy, that was found inef-
fective in the PACE trial. Critics have pointed
out differences between pacing and APT
(Goudsmit et al., 2012: 1144; Jason, 2017: 1–3),
which could account for APT having been
found ineffective in PACE (White et al., 2011)"
 

MEMum

Senior Member
Messages
440
There is quite a bit about pacing in Karen D Kirke's recent JHP article
http://journals.sagepub.com/doi/full/10.1177/1359105317703787.

Karen also makes the useful comment that PACE did not report the proportion of people already using pacing as a management tool in any of the trial arms, either at onset or end of the trial. Given that many people with ME already used pacing (she cites refs) this could distort the reported results.

Also, from the File on 4 programme, near the end, Professor Mark Baker (Director of the Centre for Clinical Practice at the National Institute for Health and Care Excellence - NICE) says, (or possibly is quoted as) "New information is being seriously considered".
This what I jotted down in my notes. Am on holiday at the moment and WiFi is not good enough to download the program, but it is very near the end.
Given that the release of the raw data from PACE and its subsequent reanalysis which makes "the findings unreliable" are mentioned in the program, then surely they should be looking at PACE errors.

You are all doing a great job with this. Many Thanks
 
Messages
2,125
For me, one of the most damning things is that although PACE and their supporters repeatedly say there is no evidence of harm caused by GET, as Karen has pointed out:
"
In three large
surveys, GET consistently ranked highly for
harm, meaning that a higher proportion of
patients reported that their symptoms worsened
with GET than with other approaches. GET
ranked 2nd most harmful of 20 therapies, 1st of
25 and 1st of 15 (Action for ME, 2014: 19; The
ME Association, 2010: 10; Action for ME,
2008: 13, respectively)."

Which means not only did the PACE authors ignore this but NICE did as well.
How on earth can they justify inflicting a therapy on all mild and moderate patients that has been reported several times as being harmful?

eta: this plus two other things would be my main points.
Both these two are posted on the Mental Elf thread:
""CBT may be helpful for people by changing negative thoughts around being ill and help them cope that way.
But CBT for PACE was not doing that. It was basically an illness aversion therapy that told people if they changed their illness beliefs they will recover."

and lastly
"The PACE authors hypothesise a very clear cause of the condition, in the combination of deconditioning and activity avoidance. This hypothesis is testable. When the evidence does not support it (which it doesn’t), it should be rejected."
 

MEMum

Senior Member
Messages
440
Prof Mella said that their CycloME pilot trial finishes in July. As it is unblinded results should be out soon, and before end of Oct when RituxME will be unblinded and they will begin that analysis.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Has anyone here done philosophy of science stuff? I have rusty 1st year undergrad knowledge I think could be used but want to sound out someone knowledgeable