People’s health can improve with Myalgic Encephalomyelitis, sometimes mysteriously, sometimes with medication and sometimes with careful Pacing of activity. The stopGET team strongly believes that exercise does not cause improvements in ME, it is not a ‘treatment’. However, when people with ME do improve for other reasons they tend to find they naturally increase activity without requiring a formal structure for this. This is Sally’s experience:
GET = graded exercise therapy
This is a “therapy” that the NHS still suggests will help people with ME.
The premise is almost plausible and runs something like this (my words):
Exercise is good for everybody, so no matter how ill you are it is always good to encourage you to move about more.
The thinking also suggests that:
People who have been ill for a very long time start to reap secondary benefits from being ill and therefore need to be persuaded to leave behind their sickness role.
Is that so?
When I was at my lowest, I adjusted everything I did downwards in order to make my life as easy as possible. Indeed having learned about the effects of exertion on ME symptoms first hand, I was continually cautious about doing stuff that might cause me to further relapse.
Yet, even knowing the risks of exertion, I was still vulnerable to the “Use it or lose it” message, that is so popular these days. Occasionally, I even considered that, I might be over-doing this resting thing. I thought perhaps all I really needed to do, was summon a bit more motivation and get going . . .
I promise you THAT never ended well!
The truth is I always wanted to do more. The fact that I withdrew from loved ones, and refused almost all social activities, was one of the toughest things I’ve ever had to do. Yet, it had to be done if I wanted to prevent further decline.
So the limits of my physical body were ever-present and ever frustrating, and gradually over time my mind started to build its plans within those limits. It’s a form of adjustment and acceptance. Sadly, every further slip downwards included a whole new cycle of frustration and adjustment. Being ill is like that.
Yet, psychiatrists think of these genuine lifestyle adjustments, as the patient adopting a sickness role.
Well yeah! When you are sick it is actually important to adjust your lifestyle to cope. And certainly a newly sick person’s role in society has to change. Those with long-term ill-health are not well enough to fulfil the role they assumed when well. For me, the adjustment to adopting a more dependent role, was not one I took lightly.
However I didn’t ever “choose” this sickness role. Certainly it became part of my life, but only because it was forced upon me.
So back to graded exercise therapy:
The bio-psycho-social premise under which GET is applied suggests that people with ME are actually no longer physically ill. The premise concedes that the illness may have started with a viral trigger, but after that, it suggests that sufferers simply maintain their role as an ill person!
With this logic it is easy to suggest that people with ME have just allowed themselves to become de-conditioned. They don’t use the word “lazy”, but in reality that is how people with ME are painted. Exercise is then the obvious “cure”.
I have a big problem with this concept, because it suggests that ill people would maintain their restricted life patterns even after they became well again.
Do they? Or more personally, did I?
I can answer this with more certainty now, because in late 2015 I started on a drug* that changed my illness, and I became able to do considerably more than before. Of course, I was “de-conditioned” – physical inactivity does that to muscles – so it took some time for me work up to my new physical threshold.
Did I need a GET therapist to persuade me to take up that additional capacity?
No. I did not!
As the severity of my symptoms lessened I spontaneously took up the extra ability that my improved health offered. Over time, I carefully let go of many of the layers of protection I had built around my earlier fragile health and I re-adjusted to my new reality.
This just happened. I didn’t need any therapist to persuade me that I needed to do more, nor to push me to increase my activity! Joyfully, and with great delight to those around me, I was able to pick up parts of my life that I’d been forced to abandon.
How could I ever have questioned my own judgement on my physical limits?
Sadly it seems that society puts incredible pressure on each of us to be “well”, and I now recognise that I was not entirely immune to applying that societal judgement to myself. Society seems to assume that illness is black or white. The greyness of long-term chronic incapacity is not well accepted. Public sympathy runs out, and there is a pressure to get well again.
Graded exercise therapy is part of that societal pressure. Combined with Cognitive Behaviour Therapy, these two NHS “treatments”, effectively tell ME sufferers that they are not really ill, and that it is time they chose to get better!
So this is what I can’t understand. Why do researchers of the bio-psycho-social school ignore patients who tell them that graded exercise therapy is causing harm? Why do psychiatrists continue to push versions of this therapy in their research and in their many highly publicised media-spun stories?
And most pertinent of all, WHY do these researchers ever get funded to test their therapies in children?
ME children and adults are constantly being told that these therapies “work”, and when they don’t, no questions are asked of the therapy itself. It is only the person who failed to make themselves well again that gets scapegoated!
It is time graded exercise therapy was stopped.
* As I mentioned above I have tried a drug, I’m not yet sharing more detail. I can say, I am happy to be doing substantially better than I was, however this is not “recovery”. I have a new limit, that is still very real. I can’t exercise through that new limit, any more I could the old one. Nonetheless, I am very grateful that the tight grip that ME had on me, has been partially released. I am still ill. I still need to protect my health by imposing limits on my lifestyle, and those limits are still frustrating, despite my delight at now having a greater energy budget. Let’s hope that soon there will be many more treatment options for everyone, and that GET rapidly becomes a thing of the dark and distant past.
Missing More is a series of posts sharing patient experiences of ME and exercise.
If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.
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This post was first published on Sally’s blog: http://sallyjustme.blogspot.co.uk/2017/02/get-out.html