Re-framing GET as pacing, or vice-versa

So, I encountered something unusual and was wondering if anyone else had as well.

I was talking to someone from Australia who has a sleep disorder, and she was talking about graded exercise therapy that she'd been given for her issue. I started to protest that GET doesn't work in all conditions, etc etc, when she said:

"I don't see what's wrong with working within your energy envelope, just being active when you're able."

Me: "You mean pacing."

Her: "Graded exercise therapy."

Me: "Graded implies going up over time -- as a word, that's what graded means."

Her: "No, you don't push to go beyond what you can do with graded exercise." She went on to describe pacing in more detail.

Huh.

So, has anyone else noted clinicians calling what they're offering "graded exercise therapy" but actually using pacing instead?

1) Maybe the news is making a dent?

2) Maybe clinicians see that pushing people past what they say they can do is not, in fact, beneficial, and change their practice accordingly, regardless of what guidelines say?

3) It may be helpful from now on to explain what you mean by GET, because apparently at least some Australian patients (with other disorders) have been given pacing advice and not GET as we know it.

4) Perhaps this is merely the way "GET" is used in other disorders, since ME patients are, you know, exercise-averse / phobic, so obviously when we say they've done all we can do, we don't really MEAN it. People with other disorders are just as clearly telling the truth when they say they've reached their limits.

Pure bias as a cause is pretty disheartening but that could also be the case.

So, an FYI and I'm also wondering if anybody else has experienced GET framed as pacing, or told they'd be pacing when in fact it's GET.

 

Anecdotally, it's perfectly possible to go along to one of the few remaining CFS/ME clinic, as they are called, here in the UK and receive either PACE-style GET, pacing-but-called-GET, or actual pacing, almost seemingly at random. So it's no surprise to hear that the same can be happening elsewhere.

 

Why call it GET then? Why not just call it activity management?

 

In regard to the UK, it's because they can then say that they are following the appropriate treatment guidelines.

 

Or pacing!

Good to know for purposes of advocacy that this is happening. People may not understand our objections to GET if it was pacing-but-called-GET that they personally experienced (or that, as a clinician, they personally use).

Thanks, everyone.

 

1. Maybe it's just the 'GET' word dropping into more vernacular usage. Like Hoover for vacuum cleaner.
2. Maybe some savvy clinicians are doing what they know is best for patients, but having to look like they are administering GET?
3. Maybe some clinicians don't have a clue what they are doing.
4. Maybe ...

 

The most common suggestion from doctors I've seen in Australia is for me to exercise in a pool. Like people with arthritis and injuries. Then I have to explain why that won't work for me.

In my experience doctors I've seen in Australia (apart from at the CFS Discovery Clinic) are particularly ill informed about ME/CFS. I have never heard them refer to GET or CBT as we know it. In fact I've never had any useful advice from doctors here about ME/CFS. And not one of them has shown any interest in reading the International Consensus Primers I've handed them.

Patient forums like this have been my "go to" source of information.

 

I believe it's all in the big ugly bag of water-muddying terminology that hijacks terms and turns them on their head so that nobody knows, or only thinks they know, what anybody else is talking about.

 

From my perspective, it could be a sneaky attempt to salvage the PACE study by making it seem like the Graded Exercise Therapy that was studied and that has been imposed on patients worldwide was actually “pacing”. By doing so, it invalidates many of the arguments raised by patients, advocates and well-respected ME researchers.

Thus, with enough time to rewrite history, PACE researchers and proponents will become the heroes they have always claimed themselves to be.

 

It seems to be common in both the UK and Australia for doctors and medical staff to use terms like graded exercise or Pacing or GET or CBT or activity management and these can have completely different meaning from the other.

New patients don't understand that the advice they are getting is so loosely and arbitrarily named with little agreement between doctors and clinics as to what the terms mean.

When patients started describing and talking about pacing it was as a reaction to the graded exercise programs that we had been told would cure us but instead left us more disabled.

I became very suspicious when doctors who had been pushing GET changed to talking about other forms of exercise therapy and then pacing.

Something I have come across is for patients to be taught what sounds like Pacing (energy envelope, PEM etc) but then for them to be encouraged to increase the formal exercise part. A patient told me about having to cut down their activity to achieve a baseline and then "when they were in their envelope" to increase physical walking. This was to be done instead of the other activities she would normally do.

The "pushing" being the salient point. The GET course I was first on was a "push through your limits and ignore your symptoms". The second called ET was to exercise "within your limits" but they didn't really understand a patients limits could change each day or week. Once the Therapist had decided what your limits were i.e. your envelope this was fixed and you had to exercise to this.

I think that the conversation with the patient needs some further questions to determine what is really happening. Are they really "being active when they are able" or in their envelope or are they really being encouraged to do some form of more formal exercise and haven't twigged?

It's always felt strange to me that a doctor would tell me to walk and be "active" within my "limits" when brushing my hair or bathing or cooking a meal would be more practical in my life. I wonder if this is what this patient has been told?

 

I had graded exercise therapy in 2014 from a UK NHS CFS clinic. This started off as pacing (butbcalled GET) and the OH advised me to take it slow doing a little extra every day or week, moving from a very gentle walk for 2 minutes to a brisk walk for 20 minutes. They always advised going slow and doing this below my energy envelope. They said the long term goal was to be able to jog for 20 minutes.

The first 3 months going from 2 minutes to 20 minutes gentle walking was fine and the pacing and focussing on symptoms was fine ...I was never pressurised to do any more than my body could take , but there was an expectation that I would eventually be running. Problem was when I did 2 minutes running I would crash and have to go back to walking. I reached a plateau and I kept the walking up but never did running since it didnt work. I was discharged from the clinic after a year and so they may think I might be running by now for all I know ...important thing is I have it on record that I have done GET and no one has challenged it so far (apart from me I mean when I realised the walking was using up valuable energy I could be using elsewhere and probably wasn’t a good idea after I deteriorated)


So I think in my case the clinic was just really going through the motions but didn’t really know what to do when I couldn’t “improve” beyond gentle walking ...e.g when I complained of joint pain in my hips, they advised getting new trainers

 

Or else the therapist IS doing CBT but thinks that it would be counter-productive to reveal this fact to the patient.

 

It very likely was, at least in many cases, because if the GET patients, as a group, had genuinely increased their activity levels , it should have shown up in the form of improved fitness one year later. But in fact, the GET group was not significantly different from the control group on that measure.

 

Best as I know, this term was devised by Dr. Leonard Jason specifically for M.E.
http://me-pedia.org/wiki/Energy_Envelope_Theory

+1 million

 

You may be overthinking this.

I would assume this is mostly just a misunderstanding on part of some people pushing GET because they somehow assume that while you do more and more, it also inherently encompasses never doing too much - never mind that how much is feasible is never figured out. You're just supposed to magically know. If you're like some of us and have to choose between brushing your teeth and making yourself something to eat for the day this obviously doesn't work, but the people who shill the GETs of this world don't seem to be bothered by that. I remember one guy when I confronted him with my actual limits simply telling me that it is not possible to have limits this low. This little trick enables people to sell their stuff better and victim blame harder when it does not have effects because they can add 'whelp, you little moron went over your limits again so of course it does not work, you have to do your exercise and cut activity elsewhere'. Sadly, I have none of this in writing.

Then again, maybe there are people out there who are trying harder to justify their garbled mess of an assumed expertise, but I have never met those so I can't talk about them.

 

It would be interesting to know where or from who this patient had received this advice. I believe Andrew Lloyd's clinic still offers 'true GET' as well as another (diabolical and barbaric sounding) GET program at the Austin Hospital.

I came across another patient yesterday who said he was undertaking 'GET' with an exercise physiologist. However, both he and the practitioner knew that what they were doing was true pacing rather than GET.

In order to claim government disability benefits here, one must usually show that the condition has been treated with CBT and GET before payments will be approved so they were calling it GET in order to tick that box.
[EDIT: to clarify, given the contradictory statements from GET proponents as to what GET is supposed to look like, I don't consider them to be gaming the system in any way.]

 

It was clear at the last NICE meeting that the clinicians on my table we're closer to pacing than GET and CBT was more activity management + relaxation techniques. This isn't uncommon. I said they should refer know what they're doing by the proper name, so that we could properly understand what was being offered or not.

It's entirely possible that they were downplaying the 'push through' element, and stressing the 'gentle' and 'balancing' parts (for GET); or that they were downplaying the 'false illness beliefs' stuff and emphasising the 'relaxation'. I've also heard that some clinics offer stretching and call it GET, or gentle yoga and call it GET, but that others insist on hydrotherapy or aerobics.

This is part of the reason why these two treatments are so unhelpful/positively dangerous. There's no standard or even agreement upon what the terms mean, and so treatment varies wildly. People like Sharpe point to this and say, 'They're just doing it wrong!' without ever acknowledging that it's people like him who are at fault for muddying these waters.

But we still need to fight for pacing. At least then, they'll have to pretend to do pacing to get funding, and exercise programmes are less likely to be funded at all as a result.

My other main issue with these treatments is that they then allow clinicians to do nothing else. No drugs, no tests, nothing. It's a way of pretending to be busy and effective, while actually doing very little. But there are specific things doctors can do: drugs for pain, sleep, OI, blood pressure, hormone replacement, etc.

 

I think that the terminology has always been ambiguous. “Graded” does not necessarily mean that the activity level should increase. A paper by Wallman et al in 2004 uses the word graded exercise in the title. However, when the exercise program is described in the text it says:

“Subjects were instructed to exercise every second day, unless they had a relapse. If this occurred, or if symptoms became worse, the next exercise session was shortened or cancelled. Subsequent exercise sessions were reduced to a length that the subject felt was manageable. This form of exercise, which allows for flexibility in exercise routines, is known as pacing.”

Incidentally, they miss this point in the Cochrane review on exercise therapy for ME/CFS. The Wallman paper—which has a positive outcome—is erroneously put in the GET group.

Peter White has admitted publicly that graded exercise programs have been adapted and become more like pacing:

“If CFS/ME symptoms are exacerbated, current activity level is reviewed, and no increase is prescribed. If necessary, the baseline is re-established, and if it has had to be reduced, for example, due to an incidental infection, a gradual return to previous exercise and functional routines is encouraged.”

Wallman KE, Morton AR, Goodman C, et al. Randomised controlled trial of graded exercise in chronic fatigue syndrome. Med J Aust. 2004;180(9):444–8.

Clark LV, White PD. Chronic Fatigue Syndrome. J Rehabil Med. 2008;40(10):882–3.

 

The Psych lobby is very good at incorporating whatever terms we patients use or stealing words from other less harmful regimes to try and make us feel that whatever they suggest is good or helpful.

So in the hands of these people the energy envelope becomes something to start with and is a malleable thing that can be increased over time if one sticks with their exercise regime.

The giveaway I think is when a patient doesn't have enough physical energy or strength for daily living yet is somehow convinced that a walk to an outside letterbox is within that envelope even if they start with one step a day. This is the deconditioning model and for patients who have had (as an example) a virus, spent a lot of time in bed and then recovered, this will get them walking to the outside letterbox eventually.

For me, the steps spent on getting to that letterbox means less strength / energy to spend on important things like bathing. It may go up and down all the time and someday I may even reach that letterbox. However, this is a natural fluctuation of the disease for me. I've done this so many times before now.