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.
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.
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.
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.