Tory Majority Day 78: Why I Did Graded Exercise Therapy For MECFS And What It Was Like Plus CFSME and Diabetes

At the bottom of yesterday’s post, a reader posted a comment about why I’d written: 

“None of them have helped my symptoms, except Graded Exercise Therapy.

GET confirmed to me that I can do a bit of exercise and described exactly how much that is before I decline. It was useful in that way.”

GET can be a loaded word for people with CFSME.

It has a long history of working for some, but not all and people feel it is dangerous or are nervous about it because it forces people to do exercise who have a problem with exercise because of their CFS ME symptoms increasing afterwards.

I answered the comment saying my next post would be about GET. I wrote it by imagining what people might ask me about GET and so I’ve answered what I think those questions would be…

If I’ve missed any and you want to know more, post a comment and I’ll answer…

First off, the answer to yesterday’s question. Yes. The timing of trying it was very important. I tried it 2 1/2 years into having ME and I was able to consider using more energy than I had when I was in the acute stage of this illness. If I’d tried it earlier, it would have been a very different story.

Why did you do Graded Exercise Therapy? 

There’s a short and a long answer to this question. The short answer is that I wanted to try to do more in my life and GET was offered to me by an NHS CFS Clinic as a means to do that.

The long answer is that I felt I had no choice but to try it. At the same time as I wanted to do more things in my life, my GP found that I was at risk of developing type 2 diabetes. Type 2 diabetes can be prevented by changing your diet, losing weight and doing more exercise.

Therefore the choice was taken away from me – I had to do more exercise. GET was the treatment programme by which I could learn to do more exercise whilst having CFSME.

It was not an option for me financially or otherwise to go down the gym, for instance. I felt that GET was delivered by CFSME experts and that as I had not exercised properly for a long, long time, I’d be in safe hands.

What was your level of functioning before starting GET? 

I have moderate CFSME.

I paced my activity by gauging how I felt on an hourly or daily basis and doing what I felt I could do accordingly – i.e. pacing. On some days I had more energy and did more and on others I didn’t so I remained at home.

I found cognitive things very difficult and tiring and I found that if I pushed myself to do physical things when I was tired or symptomatic, my pay back symptoms were terrible.

Little did I know at the time that some of these symptoms of tiredness, dizziness and fatigue could partly be explained by my body not having the ability to adequately process glucose taken from sugary food or the carbohydrates I ate  – a symptom of pre-diabetes. 

What did you know about GET before you did it? 

I knew what I’d read on the internet. I didn’t know anyone who had done GET personally but it had a reputation for forcing people to exercise through their MECFS symptoms, often making people feel far, far worse. I was very reticent about it for that reason.

However what I didn’t know was what it would be like for me to do it, or what the CFS Clinic would do with me when I started treatment. Everything I knew was by reputation only.

How were you referred? 

I was referred by my local CFS Clinic after an assessment appointment.

Who delivered GET? 

A physiotherapist who worked in the CFS team.

What was their assessment like? 

I met the physio for the first time in person and we talked about my pre-diabetic diagnosis. I explained that I was sceptical of GET and had a lot of questions, however I felt I had no choice but to try it because I didn’t want to end up being diabetic on top of having CFSME.

So my motivation was to address the diagnosis of pre-diabetes, which the physio understood.

What else did they ask you? 

Well that was the interesting part. I remember clearly on that day that I was walking with a limp. I later found out after an MRI that I had a problem with my leg that I need an operation to fix.*

What didn’t happen and in retrospect I expected to happen, was an assessment of my physical functioning. I expected a discussion about how severe my MECFS symptoms are and whether I had any functional barriers to exercising; like having a dodgy leg.

Instead we talked a lot about what GET is, how it works and what I was expected to do between session 1 and session 2 but the physio did not take me through an assessment of my functioning.

What did they tell you about GET? 

The physio said that GET was a series of incremental steps to increase your  exercise. It is something that you will need to work on, will be done daily (with 2 days off per week) and you will also need to be able to keep a diary of your exercise as well.

Yes, between 1 and 2 there was homework 😉

Did it involve working out a baseline of activity? 

Yes it did. I had to keep a rest, activity and sleep chart for 1 week to identify my baseline of activity.

Whats that?

It’s a way of working out what you spend your energy budget on daily in order to stabilize your ability to tolerate exercise and control your symptoms by pacing and activity management.

Phew! What a mouthful!

Say again and in English! 

You have some energy that you can use daily, but if you use up too much on one day and then find yourself with none left on the next day, that isn’t a good use of your physical resources. You’ve got to even out what you do so you stop those peaks and troughs.

So, keeping a rest, activity and sleep chart shows you exactly what you are doing and when. It should show you where you are going wrong as well as how much activity you should be able to manage.

That’s a lot of ‘should’s’ 

Yeah, yeah, I know. I did feel from the first assessment that the attitude of the physio was unnaturally positive. They even repeated: “It works!!” to me a few times just in case my scepticism and reticence got in the way (I assume.)

So, what did your chart show you? 

Well yeah. I have to accept that the chart showed that I did have peaks and troughs in activity.

What didn’t it show you? 

It didn’t ask me to list any other symptom other than sleep.

What, not anything? 

No. So in that week I had a migraine and there was nowhere on the chart to note that down. It looked like I’d had 2 days of constant sleep but I had slept because the migraine was so bad it had wiped me out.

What did they say about that? 

I brought that up in the next appointment and I was told the only symptoms that were important or necessary was sleep. The physio seemed astounded that on most days my chart showed that I could stay awake all day.

I pointed out to them that all I did in order to stay awake all day was keep to doing routine, run of the mill things and remain at home too.

The physio said this was: “really good!” but I felt it wasn’t.

I felt that staying awake all day by not doing anything at all was nothing to be proud of. It indicated how unwell I was, not how well I was 🙂

Ooops. Slapped wrists, negative thinking there, Lindy

Yes. There was an obvious skewing towards the positive ( It Works!! ) and ignoring the negative ( I had a migraine for 2 days ) which I found obvious and at times anger-inducing and patronising.

But I was also aware that this IS the way the treatment is supposed to be delivered in the NHS so although I was angry, I didn’t personally blame the physio for it.

Also, they’ve not got ME, so they don’t know what it’s like. Watching it objectively isn’t the same as experiencing it.

What about the actual exercise 

Ah yes. Well, in working out your baseline you then work out how much exercise you can do on a daily basis. This is the start of your treatment regime.

The idea is that you do this exercise daily no matter what your symptoms are. You have to choose an amount of time – i.e. 15 minutes and stick to it.

Then you choose what sort of exercise to do.

Like running or something? 

No. The physio was very clear that you start at your own level. So, if you have been unable to get out of bed for months, the activity would be getting out of bed, standing up, walking around your bedroom and then going back to bed.

This was a good thing about the treatment – it starts you at your own pace and it continues at your own pace.

Really? 

Yes. We had a lot of discussion about this because I wanted to be extremely careful. I started with 15 minutes per day doing a walk around the block.

How did the physio assess if it was working..

Well they used something called the Borg scale which lists a series of physical things you feel during exercise. From “I found it difficult to do” to “I found it easy.”

The idea is that by practicing doing exercise you will eventually find it gets easier and easier. When you tick off “I found it easy,” you increase the exercise by 15% of time and continue.

You incrementally increase your exercise that way.

Is that it? 

Yup. Not rocket science, I thought.

What about pay back symptoms? 

I asked about those: I was told (direct quote because I took notes all the way through each appointment) “You should expect to get some pay back symptoms while you start, but as you carry on, they’ll decrease.”

When I asked about this again so I was certain about what I’d been told, the answer was: “It works!” ( again.)

What sort of questions did you ask?

To start with I asked questions about GET itself, how the chart should be filled out, what would happen if I got an increase in pay back symptoms, what would happen if I couldn’t increase past a certain point ( to that question, I was told that “wouldn’t happen,” and again “It works!” was repeated to me).

I felt I was asking questions to clarify that I properly understood but also that I was being careful about not doing something damaging.

To their credit, they answered all of them patiently.

The best answer was…

Drum roll please……”nothing with CFS happens quickly. It will take time.” That made me feel really good, so I wouldn’t be pushed into making big increases in activity, I could take my time.

The worst answer was….

Read on…I’ll get to that in a minute…;-)

So – what did you end up doing? 

Well as I explained in this post, I take what I’m told by the doctors with an open mind but I will not necessarily do everything I’m told like following a recipe. What a rebel!

The fact was that on some days I HAD to do more than others, like the day I see my Counsellor, Crystal.

When I asked about that day, the suggestion was that I took the next day as one of the 2 non-active days in a week.

Ok, fair enough. However I felt that negated the premise behind GET.

I’m supposed to even out peaks and troughs, not have a huge peak going to Counselling then take a rest day the next day, I could do that on my own without doing GET!

How did it progress? 

Um. Well, quite soon into doing it I felt I’d understood what I was supposed to do. The principles really are quite easy to understand. It’s another thing whether they are easy to do.

But as I was someone who has moderate ME and I am used to pacing, I felt that increasing exercise weekly whilst not also examining or recording pay back symptoms wasn’t really clinically safe, and I said so.

What do you mean by clinically safe? 

Well, I mean that in my appointments I wasn’t asked to record any additional symptoms other than sleep. Also I hadn’t had a thorough assessment of my physical functioning, I was being asked to do exercise when a full work-up hadn’t happened and wasn’t happening as part of the treatment programme.

MECFS is more than fatigue. I felt that not recording the non-fatigue / sleep symptoms was odd. Very, very odd.

I felt that indicated that for me the treatment could be clinically unsafe i.e. risky and dangerous. I’m putting my ‘health hat’ on in saying that, by the way.

Right. So what happened next? 

I carried on pushing myself to do more exercise. I told myself I had to get out of my house and I started to build doing more regular exercise into my routine.

Then my leg suddenly got much, much worse.

How bad? 

Agonisingly bad. I ended up yelping and screaming with pain whenever I tried to put weight on it. Finally I got myself to A&E and I got the appointment for the MRI for the scan.

What was said about that? 

This is where  I ‘broke off diplomatic relations’ with the physio.

Oh yeah, why? 

I was flat out on my sofa for the next appointment, which happened over the phone.

I was asked how things were going and I said: “I’ve had to stop, I’ve got a problem with my leg. I ended up in A&E.”

“Ohh….” came the reply, then, “Yes, we usually find something like this happens at this stage of Graded Exercise Therapy,” (direct quotes to follow.)

Which I took to mean that they were attributing to the process patterns of patients doing GET and not that I actually had a serious injury. Frankly the tone in their voice made me think they didn’t wholly believe me.

I was furious.

Then they started to talk to me about the importance of carrying on with exercise. Picture it, I was flat out on the sofa and they are talking to me about doing exercise!  When I said, again, that I was injured the reply was: “Why would that stop you exercising?”

I said, “I’m on crutches.”

There was a long silence on the end of the phone. Eventually there was some sympathy but the damage between them and I was done.

We agreed to re-assess after the results of my MRI came through and I went back to pacing and not pushing myself unless my leg told me it was OK.

What about pre-diabetes? 

Not great, TBH. I’m still struggling to get my fasting insulin down so all of that hard work with exercise and dietary changes weren’t really having an effect.

In the intervening time I decided that I had fully grasped what GET was and what it would mean for me. Ultimately I couldn’t continue because the injury requires an operation. I was discharged at that point.

How do you feel about GET now? 

I am left with a distinct sense of disquiet. Intellectually I get what GET is, and it was useful for giving me an incentive to do more exercise at a time when I desperately needed to. I still need to, as it’s vital to being more healthy but I feel I stepped away at the right time all round.

In the last appointment I said: “I don’t agree with the behavioural techniques, you know. This illness isn’t psychological.”

“We don’t think it is either,” was the reply. OK. That’s good to know.

Signing off this post 

While I was doing GET I witnessed someone being assessed for the length of time they could walk for, by the physio.

I was in the waiting room and I watched while they clicked on a stopwatch and asked them to walk.

They went up and down and up and down and up and down until they said they felt tired. At that point they were told to stop and the length of time was measured.

The thing is that ME isn’t only about being able to do short bursts of exercise. Most people with Mild or Moderate ME WILL be able to push themselves every day to do more exercise. It’s the pay back symptoms afterwards that are important to capture and record because it’s not the experience WHILE we exercise that is important – it’s how it affects a person with ME afterwards.

I do about 1050 steps per day, measured on a pedometer, simply by doing stuff like cooking, going to the loo, washing clothes and walking around my home. When I saw that measured on a pedometer I had a light bulb moment about CFSME generally.

Of course this is the reason why I feel tired most days – 1050 steps is a lot. I hadn’t ‘seen’ this activity before doing GET and working out my chart.

I can recommend doing this chart as I think is very useful for any person with MECFS, whether you are doing GET or not. It does help you “see” how much you do, what your symptoms are, and cause and effect. It gives you some control back.

Overall CFSME is about much, much more than sleep as a symptom.

The problem I’m left with is that if GET recorded additional symptoms aside from sleep in the initial research that was carried out that underlies the principles behind GET, then I’d feel it was a tool that is applicable to CFS ME patients.

That it doesn’t, means that it is simply too blunt a tool to be safe to use for everyone with CFS ME.

© Lindy 2015

*I haven’t  had this operation because I’m so nervous about having an anaesthetic and how that will impact on my symptoms. If anyone has any advice, I’m all ears…! Thank you.

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11 thoughts on “Tory Majority Day 78: Why I Did Graded Exercise Therapy For MECFS And What It Was Like Plus CFSME and Diabetes

  1. Interesting experiences. I continue to have problems with the idea of GET. Learning to even days out, and to find a baseline is fine (that’s pacing)… but I think that the premise that we can then increase (and continue to do so) is flawed.

    GET seems based on the premise that we just need to get fitter, and so denies that patients are actually still ill.

    I would LOVE to do more, and it wouldn’t take me long to build my fitness if this disease was gone from my body.

    But just as you can’t increase a limited income by starting within budget and gradually increasing your spending (in a controlled agreed manner, & giving no attention to the interest accrued), so I can’t see how increasing exercise will cause us to suddenly have more energy available…..

    We are energetically limited. That is part of the illness!!

    Liked by 1 person

    • I really liked your analogy about increasing income within a budget – I get bored of my own thoughts and that’s put a whole new slant onto how to think about it!

      When I asked the physio: “What happens if I find that I can’t do any more exercise,” because I was thinking ahead to the point when the increments have increased so much that your body really complains and you can’t do more, the answer was: “that won’t happen, it works.”

      I’ve said before in this blog that I used to work in the health service and I found this approach, amongst other things, deliberately misleading and inaccurate when looking at the experiences of GET as whole. I almost burst out laughing it was so skewed towards the positive, but managed to keep that under check.

      It didn’t do much for trusting the process or the physio to tell me the truth and guide me through GET according to where I was ‘at’ – an essential part of any clinical interaction with a patient.

      In the consultation when I finished GET due to my dodgy leg, the physio told me that I’d had CBT as part of my treatment in the service.

      I haven’t had CBT and told them so. When they checked their notes their answer was: “Ah, but we use principles of Cognitive Behavioural Therapy all the way through our treatments in this service.”

      My answer was: “Yes, I know – I can tell by how you answered my question about how safe it was to suggest I went down a gym….” 🙂

      As you say, we are energetically limited, the decision not to have to expend more energy on GET was the right one for me.

      Lindy X

      Liked by 2 people

  2. Oh dear from your previous comment I thought you’d had a broadly positive experience! This would have driven me crazy. Strangely I’ve never been offered GET or CBT.

    From this I have no confidence that your physio understood ME. It seems like he was treating “tired all the time”. Like you I’m usually awake all day, feeling terrible. I have difficulty getting a decent amount of sleep. Also repeatedly saying “it works!” clearly doesn’t work if you’ve heard other people say it doesn’t work…

    Like you I worry about other health repercussions from going so long without exercise. I’ve previously got to 95% recovered but recovery now seems harder. From my previous experience I seemed to be able to do more as I got better rather than the other way around. Obviously it would be weird to get fully well and just stay at home as if you’re ill. Most of us make mistakes the other way and do too much, causing setbacks.

    My hunch is that there may be a small minority of people who have recovered more than they realise and GET works for them until they reach the level they have recovered to. Or people who seem to get well, don’t really comply with GET instructions and do something more like Pacing. That’s clearly a biased interpretation though!

    Baselines and diaries are useful. The pedometer seems like a useful tool. I’ve recently got a new heart rate monitor with a pedometer. I haven’t got a proper baseline yet but as a comparison I’m doing 100-300 steps around the house, so worse than you.

    Have you come across pacing/increasing exercise using heart rate?

    Like

    • Hi, thanks for your comment I found it really interesting to read and think about what you’ve said…

      I’m summarising about 8 appointments in the one post and a lot has not been included but I do feel what I’ve written is a fair summary.

      There were positives that happened, in that I was encouraged to consider doing exercise and someone held my hand through that. Also it was really helpful to do a chart and really look in fine detail at what I am capable of doing. That aspect wasn’t tackled so individually and specifically in the Lifestyle Management sessions.

      I came away from doing GET feeling that I had really tried my best. I know what I can manage and I know that pacing is a better way of managing my symptoms. Also I came away having re-learned what I knew before I got ME, which is that exercise is so important to maintaining overall health. Having the pre-diabetic scare was an indication of how badly my body is declining on the inside, from having ME. I didn’t have that problem before getting ill.

      But I didn’t finish GET to know what happened next, so I’m not the best person to talk to for a fully rounded view, I accept that. I do now exercise every day. Before I didn’t. That’s a change in behaviour and what I can cope with physically.

      Thinking about what you’ve said, this is my answer:

      I think there is a self selection process for patients who are capable of attending CFS ME clinic appointments. Clearly if you can’t physically get to a clinic appointment and they don’t offer phone appointments, you are not going to be a higher functioning ME patient. I agree with you completely on that.

      So if you are already able to consider trying GET my hunch too, is that you are either improving overall, or a higher functioning patient anyway. Again, I might be wrong about that and if anyone in the moderate-severe group is reading and has improved from trying GET, please do let me know.

      The problem I’ve got is yes, the premise behind GET. It does seem to talk in Sports Physiotherapy language, using phrases like ‘deconditioning’, rather than ‘muscle weakness’ and by using that language it feels like it’s not speaking directly to ME Patients or devised with us in mind. That rings alarm bells for me clinically.

      Actually thinking about it more, this is a shout-out to anyone who has improved by trying GET – please do post a comment below. I’d really like to know what they think and how it worked for them.

      I have heard a little bit about pacing / increasing exercise using heart rate – tell me more about it – how does it work?

      Your 100-300 steps is still exercise and I know the feeling well about thinking: “my god, I can’t do much at all can I” and the worries that come with wondering how to increase exercise when energy is so limited. I think while you are feeling so unwell it’s so difficult to consider anything other than how to cope from minute to minute and anything more is too much. I mean, people who haven’t been ill and in pain don’t know how it closes your mind down to a short space around you and how to survive how you feel.

      So the timing has to be right to try and increase exercise. I was improving and had got to the point where my life was organised too, so the time was right for me. The test will come when I decline again or have a setback, and I THEN have to consistently do exercise every day…..

      Are you thinking of trying more steps using your heart rate / pedometer?

      Lindy X

      Liked by 1 person

  3. I describe the heart rate thing in this post https://tipsforme.wordpress.com/2014/06/18/heartratemonitoring/
    A few months ago I built up to yoga most days but a bug set me back again. It has been useful for avoiding PEM regardless. I think it is actually more useful for avoiding boom and bust but people also use it to increase activity. The most interesting thing for me was measuring heart rate led me to a POTS diagnosis. I think my POTS being worse is holding me back from increasing activity atm. There is medical treatment (not a cure) for POTS and I’m waiting for a follow up cardiology appointment.

    In terms of the pedometer I’m aiming to get a sense of a sustainable baseline and what level triggers PEM. Since I also have POTS any gradually increased “exercise” will be lying or sitting (gravity problems standing) so I don’t intend increasing steps in the near future.

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    • Ah OK! Thank you for explaining more about how POTS affects you.(To my knowledge) I don’t have POTS so am a novice about what it might do to someone with ME.

      I have clicked on the link to your blog post and will read it and watch the videos too. I might have questions 🙂 !

      Liked by 1 person

  4. Very interesting post.

    Early on in my ME/CFS experience, while I had mild to moderate ME/CFS I had GET, as prescribed by my local NHS CFSME Clinic, and was told to start with just 5 minutes on the lowest setting on an exercise bike. I had not exercised for a long time, but before I was ill I was very fit and loved to exercise, and although I felt I had no energy to do it, I thought what’s the worst that can happen? So I did it, and felt ok while doing it, I stopped when the buzzer beeped at 5 minutes, feeling I could have continued on.

    Next day I woke up and I was severely ill, the same symptoms just a lot, lot worse. It is now years later and I never recovered from it.
    The clinic’s response to this? They simply discharged me. They did not want to know.

    GET shows lousy outcomes even in biased studies, but may be safe for some. But what is now clear to me is that it is not safe for all and can have severe, and long lasting negative consequences. I was not warned of the potential danger. I should have been. If it was a drug it would never get approved because it is far too dangerous.

    Liked by 1 person

    • Oh how awful for you.

      I’ve got a lot of thoughts about what you’ve been through: first off, the more we openly talk about what it was like doing GET, the less it can be ignored so thank you for posting your comment, although I imagine you are energy-sapped by doing so.

      Secondly: if anyone wants to read something that will instantly raise blood pressure and is not for the faint hearted, you can access the PACE trial manual easily on the internet. Here’s the link http://www.pacetrial.org/docs/get-therapist-manual.pdf

      GET is based on the results of the PACE Trial (as we know.) The holes in the methodology and patient selection, not to mention protocol itself explains very clearly why you experienced what you did. There is no room for diverting from the script that GET is effective (as I found too.)

      Regardless of this, my experience of GET conflicted with my knowledge and practice of health care within the NHS.

      As you say, “I was not warned of the potential danger. I should have been.” Well, there are a host of problems with the way I had GET administered to me as well. To not undertake an assessment of physical functioning prior to prescribing a treatment regime that is exercised based, with the full knowledge that I had not been able to undertake exercise for a considerable length of time beforehand, is in itself unprofessional and dangerous.

      Forget that it’s for CFSME for a moment – if you’d been ill with something else, that had seriously affected your level of fitness, a physio would assess your functioning prior to and during an ongoing treatment regime.

      If we were in America, we’d sue 😉

      Like

    • That is such a common – and horribly sad – story. Would you mind if I took a screen capture of your story (with or without your name) to show to a Dr I am in conversation with at the moment regarding Graded Exercise Therapy?

      Like

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