• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

GETSET (white) in Lancet 22/06/17

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Being the pedant I am, a minor correction. Despite what many people say, there were actually 640 participants. The first participant is on row 2 of the spreadsheet, and the last on row 641. Row 1 has the column headings.

There were 641 patients, 'Intention-To-Treat'. Some dropped out early/were not treated, or withdrew consent. ref: The Lancet
 
Last edited:

Dolphin

Senior Member
Messages
17,567
For anyone who doesn't know about this and is interested in the 6-minute walking test, this paper may be of interest:
Beekman E, Mesters I, Gosselink R, et al. The first reference equations for the 6-minute walk distance
over a 10 m course. Thorax. 2014;69(9):867.
 
Messages
2,391
Location
UK
There were 641 patients, 'Intention-To-Treat'. Some dropped out early/were not treated. ref: The Lancet
Yes, think I understand now. Although quite a few dropped out along the way, it looks like one of the APT recruits withdrew their consent at some point, which presumably meant all the data relating to that person had to be purged from the record. Hence APT had data recorded for 159 participants rather than the original 160 recruited. By the look of it the other drop outs didn't actually withdraw consent for their data to be used.
 

Artstu

Senior Member
Messages
279
Location
UK
Actually that is a hell of a walking rate. But ME being what it is, the effects will vary hugely, let alone the PEM that sets in after. I've been looking at a walk my wife and I do with frequent stops (else she couldn't do it), and it comes out at around 1 to 1.5 mph.

You're right it is a hell of a pace, only really possible for me in the freezing winter after a few months build up. I certainly can't do it in this heat.
I've been down at walking at 2 mph or less and only managing a few minutes of walking. I know I'm lucky to have been able to make some good progress.

On topic I went backwards when on a ridiculous GET programme, my therapist was clueless beyond belief.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
DDz0yEsXcAA7LQk.jpg



The above is a slide by White. On what does he base his claim? :confused:
 
Last edited:

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Yes, think I understand now. Although quite a few dropped out along the way, it looks like one of the APT recruits withdrew their consent at some point, which presumably meant all the data relating to that person had to be purged from the record. Hence APT had data recorded for 159 participants rather than the original 160 recruited. By the look of it the other drop outs didn't actually withdraw consent for their data to be used.
There were 641 patients who participated. When one patient later on became aware that the investigators did not disclose their conflicts of interest, she withdrew her consent. Once that happened, all of the trial data had to be recalculated.
 
Last edited:
Messages
2,158
DDz0yEsXcAA7LQk.jpg



The above is a side by White. On what does he base his claim? :confused:

Does anybody know of a published study that shows this.

If his treatment has such great power over patients beliefs, the that is strong evidence that anything they say in questionnaires will reflect those beliefs, so they are likely also to say they are more able to do physical stuff and are less fatigued, even if that's not objectively the case.

In other words the patients are either brainwashed, or, it seems more likely to me, simply saying what the therapist wants them to say.

A very strong argument that such subjective outcome measures are not suitable for clinical trials of this sort of therapy, since all they are measuring is the power of the therapist to get patients to say what the therapist wants them to say.

And of course that's why White and co. have abandoned any objective measures. The whole thing is an exercise in manipulating patients to fill in questionnares 'correctly' to support their crackpot theories.
 
Messages
2,391
Location
UK
DDz0yEsXcAA7LQk.jpg



The above is a slide by White. On what does he base his claim? :confused:
If people's perception of their physical function improvement is wildly and mistakenly over-optimistic compared to their actual improvement, then their perceptions about deconditioning will also be heavily skewed. It's all about perceptions rather than reality. The clue is in the slide: "... believed physical deconditioning was ..."
 
Last edited:

Dolphin

Senior Member
Messages
17,567
Does anybody know of a published study that shows this.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26565/
BMJ. 2001 Feb 17; 322(7283): 387.

PMCID: PMC26565
Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome
Pauline Powell, senior clinical therapist,a Richard P Bentall, professor of experimental clinical psychology,b Fred J Nye, consultant physician,a and Richard H T Edwards, professor of medicinec
 
Messages
2,391
Location
UK
Following on from my earlier post #401, I've been looking a bit more at the disparity between perceived and actual physical function, exemplified by PACE and perpetuated by GETSET and others.

Bearing in mind PACE set the bar for improvement at a 50% increase in perceived physical function (as per the SF-36 PF sub-scale), if you look at the highlighted figures below extracted from the FOI-released PACE trial data, you can see that with the bar at 50% improvement, the number of participants who perceived their physical function to have improved >= 50% at 52 weeks compared to baseline, was much higher than the 6 minute walking test indicated.

upload_2017-7-9_11-38-31.png


Interestingly if you increase the bar to 100% improvement, the disparity between perceived and actual PF for numbers of CBT and GET participants becomes increasingly disproportionate, albeit the numbers for actual PF are getting statistically small by then (and are less than for APT or SMC):-

upload_2017-7-9_11-48-54.png


With the rider that, as @Snow Leopard indicated, the 6mwt is itself unlikely to be wholly objective either.
 
Last edited:
Messages
54
You can get the details from this ME Analysis video:

The 10 activities of sf-36 are: 1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports. 2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf. 3.Lifting or carrying groceries. 4.Climbing several flights of stairs. 5.Climbing one flight of stairs. 6.Bending, kneeling or stooping. 7.Walking more than a mile. 8.Walking several blocks. 9.Walking one block. 10.Bathing or dressing yourself.
Thanks so much for posting this video on the forum. Reading medical research discussions are so exhausting and drains my energy. I finally understand the issues.
 
Messages
2,125
Wasn't sure where to post this.
Just been reading thro the BACME guide for severe CFS/ME:

"
6.2 PROM (Patient reported outcome measure)

Since 2006, PROMs used in the majority of adult CFS/ME services in England have been the
Minimum Dataset agreed by the services across England, The baseline measures are
Hospital Anxiety and Depression scale (HADS), Chalder fatigue scale, Pain Visual Analogue
scale, Physical Function SF36, Self Efficacy Scale, EQ-5D, Epworth Sleepiness Scale. All
baseline measure are repeated at follow-up, with the addition of the Clinical Global
Impression of Change. These are used at before treatment (baseline) and at follow-up.
With cessation of National Outcomes Database service, some services are reviewing the
PROMs they use.

Some services reported using additional questionnaires including
- Work and Social Adjustment Scale
- Pittsburgh Sleep Index
Services reported a range of strategies to make it easier for severely affected patients to
complete questionnaires including allowing patients to complete the questionnaires over
several weeks, rather than on the same day and assistance from therapist or carer (for
example, to read out questions and to write down answers).

6.3 CROM (Clinician reported outcome measure)
There is a CROM developed in rehabilitation settings (TOMS : Therapy outcome measure
Therapy Outcome Measures for Rehabilitation Professionals 3rd ed Pam Enderby and
Alexandra John. J&R Press) allows clinicians to describe relative abilities and difficulties
of a patient/client in the four domains of impairment, activity, participation and
wellbeing in order to monitor changes over time. This allows for an assessment of change
in function and role, without significant burden on answering questions on the part of the
patient. It is a measure that can also be used in collaboration with the patient.
There is a new version of TOM specific to patients with CFS/ME in preparation at present."

Anyone know anything about the 'new version',( or even the old version for that matter )?
 

Jo Best

Senior Member
Messages
1,032
Following the link in the tweet below:
http://institute.swissre.com/events/Insurance_Medicine_Summit_2017.html#tab_5
Peter White
Professor Emeritus in Psychological Medicine at BARTS and the London School of Medicine, and Chief Medical Officer, Swiss Re

Peter White is Professor Emeritus of Psychological Medicine at Barts and the London Medical School and a CMO at Swiss Re Life and Health in London, advising on psychiatric conditions and functional somatic syndromes. He has recently retired as a consultant liaison (general hospital) psychiatrist at Bart’s hospital, and led the chronic fatigue syndrome (CFS) service there.

He has always been interested in illnesses affecting both mind and body and understanding the links between both. His research has focused particularly on the aetiology and treatment of chronic fatigue syndrome (CFS), helping to establish the place of rehabilitative treatments such as cognitive behaviour therapy and graded exercise therapy. His most recent trial was published in The Lancet this year, which showed that guided self-help, based on graded exercise rehabilitation, is safe and moderately effective in reducing fatigue in patients with CFS, when added to specialist medical care, compared to specialist medical care alone.

 

Jo Best

Senior Member
Messages
1,032
Messages
2,391
Location
UK
How come this link now takes us to the 22 July issue of the Lancet, even though the paper was originally published in the Lancet 22 June, and this thread was originally started 23 June? And the link still nontheless shows it as being published 22 June. I'm confused - how does this work? Is it differences between online and printed editions?