GETSET (white) in Lancet 22/06/17

[Dolphin]

A biased review of the evidence base:

Existing evidence base for GET

GET has been shown to improve muscle strength, cardiovascular endurance, and symptoms in a wide variety of illnesses8. Three systematic reviews have concluded that GET is a promising treatment for outpatients with CFS/ME.9-11 Six randomised controlled trials (RCTs) have found improved fatigue and disability with differing graded exercise programmes compared to no treatment or control treatments.12-17 Three randomised controlled trials of graded exercise suggest that GET improves symptoms or disability more than relaxation or supportive therapy.12,15,16 In the most recent research, the PACE trial (www.pacetrial.org), graded exercise therapy was shown to be more effective in reducing fatigue and improving functioning than specialist medical care alone and adaptive pacing therapy.17

 

[Dolphin]

Engagement

In order to engage the participant in therapy, it is important that you convey to the participant your belief in the reality of their symptoms, distress and disability. You should be able to demonstrate a sound knowledge of CFS/ME should you need to, as participants will generally be well informed about their illness and may have had difficult experiences with other professionals who may have not taken their illness seriously. It is important that you show respect for your patient’s beliefs about the cause(s) of their illness and avoid challenging them as this may sometimes provoke strong emotion and could reduce the likelihood of a good professional relationship being established.

This seems a bit dubious e.g. ethically to encourage professionals to hide their views about the illness from patients.

I recall seeing something similar in CBT manuals by Chalder if I recall correctly.

 

[Dolphin]

Positive reinforcement

It is essential that you demonstrate positive reinforcement when you work with patients. Often, patients may be more inclined to focus on what they have not achieved rather than what they have. It is therefore important that you emphasise and are very positive about what they have achieved. Every session you should positively reinforce all of their achievements.

I could imagine this could bias participants perceptions of whether they are able to do more or not.

Also although they see this as in reinforcements of positive habits, another way of looking at it is it could leave to reinforcement of negative habits e.g. exercising when patients shouldn't.

 

[Dolphin]

Encouraging optimism

Although it is important that you are realistic about the benefits of GES, it is important that you encourage optimism about the progress participants may make with this approach. You can explain the previous positive research findings of GET and that you believe they too can improve.

And presumably not mention negative research findings.

 

[Dolphin]

4. Encourage participant to read the opening sections of the GET booklet (pages 1-6)

Be ready to explain any parts of the theory and models of GET (including reversibility and boom-bust patterns) that participants may ask about and direct them to the appropriate pages of the GET booklet to read before their next session (pages 1-6).

[..]

An over activity/under activity (‘boom or bust’) cycle, the terms used to describe physical activity levels fluctuating over time, is regularly observed in people with CFS. Patients tend to be over-active on their better days which may lead to an increase in symptoms and hence being functionally more restricted in the days/week following. Over activity may lead to an increase in rest and a decrease in fitness and function if prolonged.

If they really think "booming" and doing too much is such a problem, they should be giving patients pedometers/actometers to ensure they don't do too much on a particular day.

Other tools such as heart rate monitors could also be useful.

 

[Dolphin]

4. Encourage participant to read the opening sections of the GET booklet (pages 1-6)

[..]

The main purpose of ensuring the participant understands and is engaging with the GET model is to thereby ensure they understand the multiple ways that exercise can help improve their health and CFS recovery.

Except that GET an exercise doesn't bring about recovery.

The positive influence of exercise upon physical strength, endurance, cardiovascular fitness, mood, cognition, sleep, body image and confidence, immunity, weight loss, and disease prevention can all be emphasised with particular reference to any of these aspects found in the participant’s own presentation. The benefits are explained on page 3 of the GET booklet.

There is not good evidence that exercise in ME/CFS has this effect. I wonder would it be considered ethical or good practice to say this about a drug (or other intervention) if it was known that the particular group had abnormal response to the drug and hence the evidence from healthy people and the like was not necessarily relevant.

 

[Dolphin]

Step 3: Decide on a goal and choose exercise/physical activity

Setting meaningful goals is an essential component of GES, in order to help motivate participants and help them appreciate the functional context of exercise in their own lives. Not only do goals provide a clear, functional focus for treatment, but they also lead to a measurable outcome. Specific, behavioural goals that focus upon regular, realistic, functional and enjoyable exercise should be encouraged. A goal for GES should be a clearly observable, behavioural change, not a reduction or absence of symptoms. For example “walking every day for 20 minutes” and “walking outside every day for 2 minutes to and from the bus stop’ are measurable, but “no longer feeling fatigued” is not.

Symptoms are the primary way the body has to communicate problems it may be having. Ignoring them does not seem good. They are also a way the body has of saying whether the fuel tank is at or near empty or not.

Also one could see how goals for individual events like "walking every day for 20 minutes" could lead to activity substitution, where other activities don't get done or are done less. If the aim is for the person to do more activity, the total daily step count would be a better target it would seem.

 

[JaimeS]

Researchers have noticed that some people with CFS/ME may experience changes in how they interpret the messages that the body gives them during physical activity.

Nonsense.

During my exercise testing, the techs told me my perception of effort (they ask you to rate it) was very standard.

Participants are encouraged to see symptoms as temporary and reversible

I can encourage myself to think about my bank account having an extra zero at the end, too. Or, if we're confined to the physical, I can be encouraged to think of my eyes as blue.

A mild and transient increase in symptoms is explained as a normal response to an increase in physical activity.

And this is how they get people to rate themselves as improved without actually improving on any objective measures -- by implying that you should feel as terrible as PEM makes us feel. That PEM is the natural state of things. That needing to be in bed the next day is "mild and transient", so long as you're on your feet the next day, or the day after.

They ought to be ashamed, but I think they're immune.

 

[Karen Kirke]

@Karen Kirke, the interquartile range (IQR) you quoted for the control group (75-570) is actually from the next line in the table for Physical activity (min per week). The correct values for Duration of illness (months) are

GES group: median = 46, IQR = 23-114
Control group: median = 42, IQR = 25-99

I was alerted by the fact that the median did not lie inside the IQR.


@Valentijn, I think this statement is based on the wrong numbers.

You're absolutely right, @BruceInOz, going back to edit my original post now. Sorry for any confusion!

 

[Karen Kirke]

Very weird to use the median instead of the mean. Based on the differences between the interquartile ranges, doesn't it suggest that the mean duration was probably much longer in the control group? Maybe even by a factor of 3-4 times longer?

Sorry for misleading you @Valentijn! My eyes slid down a row when citing the IQR for the control group. I know @BruceInOz has alerted you to this already but just to be sure. I have now edited my original post.

 

[Dolphin]

Spoonseeker blog: Spotlight on GETSET Julie
https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/

http://forums.phoenixrising.me/index.php?threads/spoonseeker-blog-spotlight-on-getset-julie.52616/

 

[JaimeS]

Researchers have noticed

A slipped-in appeal to authority, actually. "Not that we have any data that says so, but we sure have 'noticed'..."

No citation. Presuming it's actually the case that they've heard researchers say so (apart from each other, back and forth) -- we're being asked to value researchers' "opinion" over objectively measured values... so much as perception of effort can be said to be objective. Because they're 'researchers' and therefore are clever / infallible.

It's so swift you almost miss it, but "researchers have noticed" means next to nothing, maybe less than nothing. It's like saying "we have no data, but please take our assumptions as factual".

 

[Dolphin]

Probably a minor point:

Sometimes it is helpful to suggest the exercise is broken up into two separate sessions in the day. This can be useful for someone who finds it difficult to exercise for 20 minutes non-stop. However, each session should not be less than 10 minutes, as 10 minutes is required to make progress.

Yet just 2 paragraphs above this they mentioned exercise that was less than 10 minutes:

Once a daily baseline duration of physical activity can be achieved comfortably (often leading to a reduction in perceived effort), the participant should be encouraged to increase the duration of their daily (5 days per week) exercise. The incremental increases should not be any more than 20%, but the increase should occur at each exercise session that occurs in that week. E.g. a 5-minute walk 5 days per week becomes 6 minutes on all 5 days; a 2-minute bounce on a rebounder 5 days a week becomes a 2.5 mins bounce on 5 days each week, 10 sit-to-stands become 12, 1 minute on the exercise bike becomes 72 seconds.

 

[Dolphin]

3. Recognise achievements and congratulate efforts
It is essential that you demonstrate positive reinforcement, emphasising and being very positive about what they have achieved and the effort made. At every session you should positively reinforce all of their achievements, however small.

Could encourage people to keep going beyond what they should. Also could encourage them to focus too much on exercise to the detriment of other things in their lives.

 

[Dolphin]

It is normal, and likely, that participants will suffer a setback at some point during their GES programme, for whatever reason.

Possibly an interesting admission.

If the plan has been undertaken carefully, with a low baseline and small increments as planned, it is very unlikely to be the exercise programme that is responsible for their setback. However, it is important to ascertain whether any components of the GES programme may have contributed towards setbacks, and to adapt the plan immediately to avoid difficulties.

I wonder what evidence they have for this "very unlikely" claim.

 

[Dolphin]

A central concept of GET and GES is to maintain exercise as much as possible during a CFS/ME setback. This is to reduce the many negative consequences of rest, and to allow the body to habituate to the increase in activity. If activity and exercise is reduced at this time, the boom/bust cycle continues, and the body is not able to desensitise to the increase in activity: which is, of course, an essential component of a graded increase in exercise and activity.

Bolding and italicsing is theirs.

-----

Although it can be difficult to encourage maintenance of exercise during an increase in symptoms, participants usually are able to understand the reasoning behind this and are often pleased they were able to maintain activity during this time. It is important to explain that although they have an increase in symptoms, ‘hurt does not equal harm’.

Although it might.

 

[Dolphin]

It is important to encourage the participant to find sustainable methods of maintaining exercise, and to support them in solving difficulties they have had in establishing a regular exercise programme. Integrating their exercise into a social or community setting may also be important, e.g. walking with friends, participating in a team sport, joining a local gym or doing an exercise class. If they are keen to aim towards a goal that is beyond their current capability, discuss how they could increase their physical exercise to achieve their plan. For example, if the participant wishes to attend a local kick-boxing class, they will need to build up their aerobic capacity, flexibility and physical strength to be able to achieve an hour of a high intensity activity. You might want to highlight that they should consider how they will exercise during the winter, when they may be less likely to walk outside, or how they might tackle a significant increase in gradient.

I very much doubt somebody with CFS should be considering the underlined types of exercises. I could easily imagine that somebody who is basically recovered a normal life could relapse if they tried to undertake such activities.

 

[Luther Blissett]

"Positive reinforcement

It is essential that you demonstrate positive reinforcement when you work with patients. Often, patients may be more inclined to focus on what they have not achieved rather than what they have. It is therefore important that you emphasise and are very positive about what they have achieved. Every session you should positively reinforce all of their achievements."

I could imagine this could bias participants perceptions of whether they are able to do more or not.

Also although they see this as in reinforcements of positive habits, another way of looking at it is it could leave to reinforcement of negative habits e.g. exercising when patients shouldn't.

This is the view of http://www.humanesociety.org/animals/dogs/tips/dog_training_positive_reinforcement.html :

Be careful that you don't inadvertently use positive reinforcement to reward unwanted behaviors. For example, if you let your dog outside every time he barks at a noise in the neighborhood, you're giving him a reward (access to the yard) for behavior you want to discourage.

By understanding positive reinforcement, you'll see that you're not forever bound to carry a pocketful of goodies. Your dog will soon be working for your verbal praise, because he wants to please you and knows that, occasionally, he'll get a treat, too.

When the Humane Society has more warnings than GET Therapists...

 

[Sean]

They are in the hair-splitting phase.

Next up should be the bargaining phase.

 

[Barry53]

Can someone please point me to the actual SF-36 physical function subscale questionnaire itself. I've scoured the web using its full reference, abbreviated, etc, and none of the hits actually get me to the questionnaire itself, albeit zillions of stuff referencing it. Very frustrating!