GETSET (white) in Lancet 22/06/17

[Dolphin]

The rationale behind GET stems from both a physical and behavioural understanding of CFS/ME. Physical deconditioning, exercise intolerance and avoidance caused by relative inactivity are reversed by gradually and carefully re-introducing regular physical exercise, aiming to return a patient to normal health and ability. This model has been used in previous trials.12,13,16 Exercise also has a role to play in improving the sleep disturbance, mood, and cognitive problems found in people with CFS/ME.15

 

[Dolphin]

The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging. However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients.

 

[Dolphin]

Apart from improvements in CFS/ME and function, a major objective for GET is to undertake the amount of exercise recommended for full health and prevention of disease. The quantity of exercise recommended by the British Association of Sport and Exercise Sciences (2010) and the American College of Sports Medicine (2011) is 30 minute sessions of moderate intensity physical activity at least five times a week.5,6

If this is a major objective, it should probably be used as an outcome measure. I don't recall it ever being used in any GET trials. The poor individual results in the GET group in the PACE trial makes me wonder whether any participants reached this "major objective".
It can be frustrating to see graded exercise therapy programs been described in the literature and probably leading to many professionals believing that at least some participants must be reaching such a level of activity or otherwise they wouldn't be mentioning it.

 

[Dolphin]

1. Individualising treatment
Progress is recommended as 20% increases in duration or intensity once a baseline has been set.

Interesting to see 20%, rather than 10-20%. With a weekly increase of 20%, high values should be reached quickly unless somebody is starting from a very low baseline.

 

[Dolphin]

6. The importance of relying on distance covered, rather than a sense of effort
The sense of effort is not a reliable indication of physiological effort in a patient with CFS/ME. So distance covered in a specific time can replace this, and should be used at the stage of gradually increasing the intensity of exercise/activity.

I don't know what the evidence is for the underlined bit.

 

[Dolphin]

7. The importance of maintaining exercise levels
If the participant reports an increase in fatigue or other symptoms of CFS/ME as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra few days. They should be reminded that each new level will initially feel harder until the body adapts: they are doing an activity they have not done for a while.

It's all easy peasy.

 

[Dolphin]

8. Strategies for planning exercise
When planning the next session of exercise, various means may be used to improve the likelihood of the participant undertaking the next phase of the programme. Motivational techniques commonly used by physiotherapists to improve compliance are considered appropriate, as long as the techniques do not involve CBT. E.g. Motivational interviewing and precise planning, as well as encouraging participation from partners, family and colleagues can be used. E.g. when are you going for a walk? Who with? What time?

More talk of motivational techniques which could lead somebody to do too much/concentrate too much on the exercise program above all else.

 

[Dolphin]

While doing physical activity, participants will have a perception of how hard that exercise feels. This is called a rating of perceived exertion. This feeling reflects how heavy and strenuous the exercise feels to them, combining all sensations and feelings of physical stress, effort, and fatigue. They are supposed to not concern themselves with any one factor such as leg pain or shortness of breath, but try to focus on their total feeling of exertion.

So ignore leg pain. Seems risky.

 

[Dolphin]

The rating of perceive exertion (RPE) (measured using the Borg Scale below35) is not discussed in the GET booklet and therefore is not something you need to discuss with the participant unless they mention it. It is a concept that is important to the participant in their overall success with GES because it is usual for CFS/ME patients to have higher Rating of Perceived Exertion (RPE) than those who do not have CFS.12,26,36 This may be related to sleep disturbance, deconditioning, enhanced interoception (increased awareness of body sensations), or mood disturbance among other reasons.12

No real biological reasons given.

 

[Dolphin]

Considerations for using HRMs [Heart rate monitor]:
 Participants should be advised to wear the HRM only for exercising, and not at other times during the day.

Why?

 

[Dolphin]

Choose your activity: exercise should be:

Relevant: Exercise should relate to an activity you enjoy (e.g. visiting museums / enjoying social outings) or an activity you need to do in your daily life e.g. housework, walking to the tube.

Walking around a museum could involve all sorts of different quantities of activity.

Regular: To make changes and maintain them, exercise needs to be done regularly and fit into your everyday life; it is a long-term lifestyle change – not a ‘quick fix’

Achievable: Be sure that you are not aiming too high and attempting to do exercise that is beyond your current capacity. However, you may well be able to work up to your ‘goal exercise’ (e.g. joining a fitness class/playing football with friends) if you follow the concepts of Graded Exercise Therapy carefully.

As somebody who was mildly affected for over 4 years including 1 year where I was swimming 1000 m (with breaks) or cycling 6 miles/10km, I think the underlined sort of activities are not suitable to be talked about in connection with CFS as they involve high-intensity activities.

 

[Barry53]

Choose your activity: exercise should be:

Relevant: Exercise should relate to an activity you enjoy (e.g. visiting museums / enjoying social outings) or an activity you need to do in your daily life e.g. housework, walking to the tube.

Walking around a museum could involve all sorts of different quantities of activity.

Especially as many have long steep flights of stairs and others don't. Ditto walking to the tube. Infant school pupils would be able to point this stuff out.

 

[Artstu]

Apart from improvements in CFS/ME and function, a major objective for GET is to undertake the amount of exercise recommended for full health and prevention of disease. The quantity of exercise recommended by the British Association of Sport and Exercise Sciences (2010) and the American College of Sports Medicine (2011) is 30 minute sessions of moderate intensity physical activity at least five times a week.5,6

I can do that with relative ease especially in the cold of winter, I don't get much else done though, and I'm most certainly no where near back to normal health.

1. Individualising treatment
Progress is recommended as 20% increases in duration or intensity once a baseline has been set.

This shows their complete lack of insight into the illness, increases need to be more in the order of 1%. Do the maths on the 20% increase and you're soon into trying to do over an hour in just a few weeks time.

 

[Snow Leopard]

You can give them information on previous research trials of GET for CFS/ME that show increases in physical strength, fitness, and functional capacity, sleep, mood and cognition.

It's a pity no such evidence exists.

Not only did they not check whether their methodology and explanations were plausible to patients before starting, they clearly didn't do a literature review before writing the booklet either.

 

[Artstu]

Especially as many have long steep flights of stairs and others don't. Ditto walking to the tube. Infant school pupils would be able to point this stuff out.

I guess I'm unusual in that I don't find stairs much of an issue. I've not been to any car shows or the like at the NEC since being ill, it would be too much for me. I did use a mobility scooter at Cosford air museum though, I'd have given up a quarter of the way round without it.

 

[Snow Leopard]

This shows their complete lack of insight into the illness, increases need to be more in the order of 1%. Do the maths on the 20% increase and you're soon into trying to do over an hour in just a few weeks time.

To be fair, this is what they said:

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.
The duration of exercise should then be incrementally increased, without an increase in intensity, to 30 minutes. Once the participant is able to achieve 30 minutes of exercise on 5 days out of 7 (even if they are doing some on other days) and is managing this without exacerbating their symptoms, only then should the intensity be increased.
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.

20% per week turns 5 minutes into 30 minutes after 10 weeks. I am however willing to bet no one achieved this rate of increase.

Of course, none of this low intensity stuff will reverse deconditioning (well, this has been shown in healthy people - high intensity activity is needed to increase strength or exercise capacity).

 

[Dolphin]

However, the good news is, that with regular stretching, muscles will become much more supple and this can make them feel more comfortable. Many people with CFS/ME report how much better they feel when stretching regularly.

Over time they will find these stretches will become easier as their flexibility increases.

I'm not sure what the evidence for this is in ME/CFS specifically. I know I developed a tight hamstring after getting ME/CFS. I spent a lot of time stretching it but even over years it didn't seem to make much difference.

 

[JaimeS]

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!

Maybe somebody already answered, but https://nexusipe-resource-exchange.s3.amazonaws.com/SF 36 health questionnaire.pdf

For something like this, try entering :

SF-36 pdf

...as your search-phrase.

 

[Forbin]

Something that strikes me as strange about the SF-36 PF10 is that the possible scores are 0,5,10,15,20...100.
On the 10 questions you get 0 points for "limited a lot," 5 points for "limited a little," and 10 points for "not limited at all." Thus, the lower the score, the more limited you are.

But... is the interval between "not limited at all" and "limited a little" really the equivalent of the interval between "limited a little" and "limited a lot"? It doesn't seem like a very linear scale.

Since the difference between the GES and control groups was equivalent to one interval on one question out of the 10, it would be nice to know if that interval was between none and a little or a little and a lot.

 

[Sean]

I'm not sure what the evidence for this is in ME/CFS specifically. I know I developed a tight hamstring after getting ME/CFS. I spent a lot of time stretching it but even over years it didn't seem to make much difference.

Stretching was one of the first things I tried.

Or, more accurately, it was something that I tried to keep doing, as I had already been doing regular stretching long before getting sick.

Didn't work. Not then, nor at any other time I have tried in the 3 decades years since.

Another little inconvenient fact for the BPS/MUS crowd to ignore.