GETSET - Graded Exercise Therapy guided Self-hElp Treatment (GETSET)

Valentijn

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Bizarre. The "benefits" of exercise which they list have not been reported in ME patients, nor even as a result of GET in non-ME patients. It's the benefits of exercise in healthy people :confused:

It's a bit funny where they say how safe GET is ... and then discuss how if it made you sicker in the past, it's because you did it wrong. It's going to sound pretty crap, even for someone who hasn't been harmed by GET yet.

The underlying theory is given as deconditioning. I'm pretty sure there's 0 evidence of that, and even the PACE authors have reluctantly shuffled away from that claim while muttering incoherently under their breath.


Research shows that fitness and strength can be increased by gently re-introducing regular physical activity at a low level and gradually building this up over time - in other words using a GET programme.
"In other words" this has never been shown to happen in ME patients, with a GET program or anything else. But they're happy to extrapolate that very ill people will react exactly as healthy people do to reconditioning, despite the research showing otherwise.

There's also no mention of the use of heart rate monitors, despite that NICE says they should be incorporated into a GET program for ME patients. Their only mention of heart rate is that it's normal for it to be elevated - but they don't say how elevated it should be from, for example, standing up for two minutes.


If your setback is not CFS/ME related, in other words you have picked up an infection, you should reduce the amount of exercise you do, or even stop altogether for a short while, before returning to your GET programme.

If your setback is CFS/ME related then you should try and continue exercising at your current level to the best of your ability.
So symptoms of a "real" illness like a cold can be a reason to ease off. But we should push through the presumed imaginary ME symptoms. These quack fucktards seem bound and determined to make their ME patients as sick as possible, and to completely ignore as much as possible about the disease. I hope they get sued for the damage they do, and lose their medical licenses.

Honestly, this is one of the worst guidelines I've ever read, even from the psychobabbler crowd. They ignore everything about ME, including a lot of biomedical research, and even make NICE look good by comparison. If someone considers themself enough of an expert to produce a treatment guide, they are damned well beholden to examine all of the evidence, not cherry pick, spin, and hype data and hypotheses which support their ridiculous beliefs.

I think there are good grounds to officially object to this tripe, since they are ignoring and even contradicting the very basic safety measures built into GET as described by NICE. It's just inexcusable.
 

Valentijn

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To give "credit" where it is due:
This GET guide was written by Nathan Butler, Nicola Dyer, Christina Michailidou, Sheena Spence, Rebecca van Klinken, Laura Butler, Victoria Johnson, Catherine Simpson and Tracey Turner.

The authors work as GET therapists in the following trusts:
Barts and The London NHS Trust
East London NHS Foundation Trust
Oxford Radcliffe Hospitals NHS Trust
NHS Lothian
South London and Maudsley NHS Trust
The Royal Free and Hampstead NHS Trust
North Bristol NHS Trust

Edited by Dr Lucy Clark, Barts and The London School of Medicine and Dentistry

Acknowledgements
With thanks for the help of the following people:
Professor Peter D. White
Sarah Cunningham
Jessica Bavinton
 

Esther12

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Bizarre. The "benefits" of exercise which they list have not been reported in ME patients, nor even as a result of GET in non-ME patients. It's the benefits of exercise in healthy people :confused:
It stood out to me that they were being a bit tricky with that. No citations, and less than clear when they were talking about research findings for CFS, and then for healthy people.
 

Daisymay

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The leaflet is.....well words fail me...at least words I could put up on PR!

At what point does it become criminal for doctors/GET therapists to ignore all the scientific biomedical evidence and diagnostic criteria and come out with this potentially dangerous garbage?

It is really inexcusable, in my opinion it's professional, institutional negligence and abuse.
 

worldbackwards

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And, at two years, it's officially all been a waste if time anyway! You've got the same level of health as if you did nothing for two years! :eek:
The positive effects of GET can last at least two years (or even longer – no studies have tested this yet) and success will give you a greater chance of controlling your symptoms rather than CFS/ ME controlling you.
Or alternatively, do bugger all and it'll be exactly the same. Where's my leaflet?
 

Bob

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via @Tom Kindlon

GETSET trial protocol
June 2016.

(It's free to access and download at the moment.)


Graded Exercise Therapy Guided Self-Help Trial for Patients with Chronic Fatigue Syndrome (GETSET): Protocol for a Randomized Controlled Trial and Interview Study
Clark LV, McCrone P, Ridge D, Cheshire A, Vergara-Williamson M, Pesola F, White PD.
JMIR Res Protoc 2016;5:e70
DOI: 10.2196/resprot.5395
http://www.researchprotocols.org/2016/2/e70/

ABSTRACT

Background: Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is characterized by chronic disabling fatigue and other symptoms, which are not explained by an alternative diagnosis. Previous trials have suggested that graded exercise therapy (GET) is an effective and safe treatment. GET itself is therapist-intensive with limited availability.

Objective: While guided self-help based on cognitive behavior therapy appears helpful to patients, Guided graded Exercise Self-help (GES) is yet to be tested.

Methods: This pragmatic randomized controlled trial is set within 2 specialist CFS/ME services in the South of England. Adults attending secondary care clinics with National Institute for Health and Clinical Excellence (NICE)-defined CFS/ME (N=218) will be randomly allocated to specialist medical care (SMC) or SMC plus GES while on a waiting list for therapist-delivered rehabilitation. GES will consist of a structured booklet describing a 6-step graded exercise program, supported by up to 4 face-to-face/telephone/Skype™ consultations with a GES-trained physiotherapist (no more than 90 minutes in total) over 8 weeks. The primary outcomes at 12-weeks after randomization will be physical function (SF-36 physical functioning subscale) and fatigue (Chalder Fatigue Questionnaire). Secondary outcomes will include healthcare costs, adverse outcomes, and self-rated global impression change scores. We will follow up all participants until 1 year after randomization. We will also undertake qualitative interviews of a sample of participants who received GES, looking at perceptions and experiences of those who improved and worsened.

Results: The project was funded in 2011 and enrolment was completed in December 2014, with follow-up completed in March 2016. Data analysis is currently underway and the first results are expected to be submitted soon.

Conclusions: This study will indicate whether adding GES to SMC will benefit patients who often spend many months waiting for rehabilitative therapy with little or no improvement being made during that time. The study will indicate whether this type of guided self-management is cost-effective and safe. If this trial shows GES to be acceptable, safe, and comparatively effective, the GES booklet could be made available on the Internet as a practitioner and therapist resource for clinics to recommend, with the caveat that patients also be supported with guidance from a trained physiotherapist. The pragmatic approach in this trial means that GES findings will be generalizable to usual National Health Service (NHS) practice.
Trial Registration: International Standard Randomized Controlled Trial Number (ISRTCTN): 22975026; http://www.isrctn.com/ISRCTN22975026 (Archived by WebCite at http://www.webcitation.org/6gBK00CUX)
 
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Bob

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Trial Protocol said:
Results: The project was funded in 2011 and enrolment was completed in December 2014, with follow-up completed in March 2016. Data analysis is currently underway and the first results are expected to be submitted soon.
So it's a post-hoc protocol? It's definitely not a pre-specified analysis plan! That's a good start!
 

Bob

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Trial Protocol said:
Adults attending secondary care clinics with National Institute for Health and Clinical Excellence (NICE)-defined CFS/ME (N=218) will be randomly allocated to specialist medical care (SMC) or SMC plus GES while on a waiting list for therapist-delivered rehabilitation.
Trial Protocol said:
All participants will be on a waiting list for therapist-delivered treatment. Standard medical care (SMC) will be compared with SMC plus GES.
Trial Protocol said:
Standard Medical Care (SMC)
Participants will be informed at the end of their assessment appointment that they have been allocated to SMC and that they should follow the advice of their GP and specialist doctor as usual. They will not have access to the self-help booklet used in the trial. As per usual, specialist doctors will prescribe or advise regarding medication as indicated for symptomatic treatment of associated symptoms (eg, insomnia and pain) and comorbid conditions (eg, depressive illness). These patients will start the therapy to which they have been referred after the endpoint of the trial at 12 weeks or more after randomization, when it becomes available. After completion of trial participation, these patients will also receive a copy of the GES booklet.
 

Marky90

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Thanks.

I find it ridicilous, they should simply have had a control group. SMC was just a potential source of spin.
 

Bob

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If you compare the details of SMC (which are practically non-existent) in the protocol, with the plentiful details of GES, for which there is considerable input from a therapist, it's very clear that SMC-alone is not an adequate control and that the trial is biased in favour of a positive response rate for the patients receiving GES. Not to mention the post-hockery of the entire protocol.
 
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