Graded Exercise Therapy for CFS /ME & FMS;
Friend or Foe?
Most don’t understand WHY graded exercise therapy for CFS /ME/FMS reverses progress, yet many people that make full recovery list it as part of their reason for their success. Understanding WHY can make ALL the difference.
Anyone diagnosed with ME/CFS, and a great deal of those diagnosed with Fibromyalgia, know full well that if they push too hard, their energy levels crash like the Hindenburg. In fact, post-exertional malaise is even part of the criteria used for diagnosis of ME/CFS, so you have to ask yourself:
HOW ON EARTH COULD ANYONE SUGGEST GRADED EXERCISE THERAPY for CFS/ME AS A STRATEGY FOR RECOVERY?
Well, how about because it works….for some.
So let’s explore what’s wrong with two of the most common treatment strategies for ME/CFS/Fibromyalgia and why they don’t work for people. Only then can we explain how these strategies really DO work for people that use them correctly.
Have you wondered why so many people are so negative about graded exercise therapy for CFS /ME? It strikes me that it’s because most people who have tried it, sooner or later have the inevitable result of a painful crash as they climb that ‘graded’ slope. You keep pushing the envelope, increasing your activity ever so slowly, until eventually you crash. So the strategy is quickly discarded and a strategy of PACING is often adopted instead.
Pacing often becomes a key strategy for people with ME/CFS or Fibromyalgia. It basically means limiting your activity within the envelope where you can function without exacerbating your symptoms. But inevitably, even with the best efforts, a crash arrives sooner or later anyway, when something outside of your control happens. And whilst pacing is probably one of the most used coping mechanisms, it can be just as damaging to recovery efforts as its counterpart, the push and crash!
In fact, it’s my view that both strategies reinforce the underlying ANS dysfunction driving the illness cycle and can keep people from making a full recovery.
But surely, if you don’t do one, you have to do the other, right?
Why Graded Exercise Therapy For CFS/ME & Fibro Doesn’t Work For Most People
Could it be because people are not doing it right? Could the success of graded exercise therapy for CFS /ME/FMS be that it is ALL IN THE DETAILS?
First, we need to understand why the fatigue and symptom exacerbations occur after exercise. This is covered in a little more detail in CFS Unravelled, but let me summarise one aspect of it here.
Energy is required in every cell in our body, for just about every process. This energy comes from a molecule called Adenosine Triphosphate (ATP). Tri phosphate, meaning 3 phosphate ions. This molecule gives up its energy by shedding a single phosphate ion to form Adenosine Diphosphate (ADP), Diphophate meaning two phosphate ions. And ADP gets recycled to ATP mainly in parts of our cell called mitochondria. This normally happens 100’s of times a day. However, this process in people with ME/CFS and Fibro becomes diminished and is often referred to as mitochondrial dysfunction.
Without going into the complex mechanics of it all, simply realise this. If ADP does not get recycled to ATP, then there isn’t enough energy. When there isn’t enough energy, ADP loses another phosphate ion (to supply needed energy) to be converted to AMP (Adenosine Monophophate), you guessed it, mono meaning 1 phosphate ion. The problem with this is that AMP is largely lost and cannot be recycled. So how does that affect us?
If your ability to recycle ADP is diminished, if you use more energy than you have, your ability to create energy in the future is compromised. In other words, you experience post-exertional fatigue. It’s like being a farmer who can’t grow enough grain because of lack of rain, and so he eats his last seeds – and so there is nothing left for him to grow another crop.
Whether you look at the problem from a cellular ATP energy point of view or from a hormonal point of view is perhaps less important. The point is that if there is an insufficiency, pushing to reach higher levels of output (activity or exercise) without addressing the underlying problem, is clearly going to lead to a crash sooner or later!
The real problem comes from the whole premise that many people adopt with graded exercise therapy for CFS /ME/FMS. They assume that it is a somatoform disorder where the fatigue results from inappropriate framing of one’s ability to exert oneself. The old ‘it’s all in your head!’. Hence they think that deconditioning is a root part of the problem, and by ‘gaining confidence’ and pushing yourself back into condition, your ability to exercise and resume normal activity returns.
After decades of research into the physical dysfunctions of ME/CFS and Fibromyalgia, it seems a little bizarre that anyone would still suggest the illness is just perceived and not real. And anyone with the illness (or with a history of it), rightfully so finds it offensive when people suggest this. There is no doubt, the physical dysfunctions and crashes are absolutely real and there is of course endless scientific and clinical evidence to support this.
And so, it’s no surprise that simply increasing your activity when you have ME/CFS and Fibro, even if done gradually, has no reason to yield results. Obviously we need to address whatever is wrong causing the fatigue and other symptoms!
That is why instead of continually increasing their activity, most people end up staying within their energy envelope and adopt an equally unsuccessful strategy, that can really be seen as a coping strategy; PACING.
Why Pacing Doesn’t Work For Most People With ME/CFS & Fibro
Now before you bombard me with emails about how pacing has worked for you, realise that I am NOT talking about reducing your symptoms or allowing you to cope better.
Yes, pacing can help you reduce your symptoms and help you cope with Fibromyalgia and ME/CFS.
But the whole focus here is on recovery as opposed to just managing. If looking for recovery as opposed to just feeling a little better is too big a mental leap to make, because you have been unwell for a long time and unsuccessfully tried to regain your health many times, then realise that I know exactly how hard that is, I’ve been there!
So what could be wrong with pacing? After all, if you have been listening to the recovery stories, you will commonly hear about people using that very strategy as well as GET to get better. Why has it worked for them and not the rest of people.
The problem again comes from a lack of understanding of what is the root mechanism of ME/CFS and Fibromyalgia (see video explanation). You see, whilst it is a REAL PHYSICAL ILLNESS, with the symptoms deeply rooted in very real and measurable physical dysfunctions, I describe the root mechanism, the ANS dysfunction, as being driven by both the secondary physical dysfunctions themselves as well as other psychosomatic factors that vary between people.
One of these psychosomatic triggers is the belief structure around the causation and triggering of the illness. Now realise that we are NOT TALKING ABOUT A SOMATOFORM DISORDER, because clearly the illness AND the symptoms are REAL! But I AM saying that certain psychological factors trigger and perpetuate the illness, because the illness is driven by the nervous system.
So by setting mental boundaries around our ability to perform tasks or experience sensations, the nervous system maladaption becomes more deeply entrenched and it becomes a self-fulfilling prophecy.
Without a deeper understanding of how this works, all this might sound like more of the old ‘it’s all in your head’. But let me assure you, that is NOT what I am saying at all.
What I am saying is that whilst there may or may not have been much of a psychological component in you getting the illness, psychology certainly becomes an important part of our efforts to recovery our health.
But if you have not gained enough understanding on how this illness works yet, realise that psychosomatically triggered illnesses are all around us. Just look at heart attacks. Regardless of what we know about atherosclerosis, it is such common knowledge that heart attacks have psychosomatic triggers. You don’t need to be a medical expert to realise this, even little children know it. “You scared me, you nearly gave me a heart attack!”
The Distinctions that Make GET & Pacing Work
Hopefully it’s becoming clearer why ME/CFS and Fibromyalgia are such confusing illnesses. The contradictions are enough to drive anyone crazy!
So far, I have explained to you in detail, why GET and pacing don’t work for most people with ME/CFS and Fibromyalgia to experience a recovery.
But how is THAT relevant when we clearly come across people who have not just benefitted greatly, but actually had these strategies as significant components of their efforts that eventually led to full recovery? Forget logic, the proof is in the pudding, right?
The answers can be found in the details!
Let’s start with pacing. Especially early on in our efforts to recover, pacing is extremely important! It ensures that you don’t deplete your cellular energy currency (the ADP & ATP), or your ability to respond hormonally (with catecholamines such as Cortisol, Adrenaline and Noradrenalin).
If your body is not even meeting its basic needs, there are no resources left to rebuild and repair.
Now whilst the body is of course able to return to health with amazing efficiency, help along the way makes things a lot easier. This is where a multi-lateral treatment approach becomes very important to support the body’s recovery. But we also need to ensure that we are not exacerbating the problems that have caused the symptoms in the first place.
No matter how good your treatment regime is, as long as you are taxing your body beyond its limits, you are not in a healing state and your efforts will be frustrated.
And of course, we need to ensure that we address the root mechanism so that they problem is not re-created, which is the source of our relapses even after our best efforts have yielded encouraging results. As long as our bodies are experiencing an ANS dysfunction and other secondary dysfunctions, significant oxidative stress is experienced and full cellular dysfunction is not easily restored. Hence my phrase “treat the cause, not just the consequences”.
And it’s this focus on the ANS dysfunction that leads me to the important distinctions about GET. Exercise is a very important part of detoxification through lymphasising and has numerous mental and physical benefits for well-being. That is why all people benefit from the right type of exercise, including people with ME/CFS & Fibro. But this benefit comes with the proviso that the exercise doesn’t create more oxidative stress than your cells can handle or that your energy currency (the ATP/ADP) is lost.
In my experience, GET is particular beneficial for people with Fibromyalgia. However, ironically because the focus for GET is usually around fatigue, it is usually not discussed for those that can benefit from it the most.
So my view is that people should forget about ‘grading’ their activity in a regimented way, unless they can do so without triggering fatigue. If it doesn’t trigger fatigue or other major symptoms (for those Fibro folk lucky enough to be in that position), try and do a LITTLE bit more every day.
But for the vast majority of people with ME/CFS & Fibro that experience symptoms crashes, you need to grade your activity in line with your ability whilst still keeping it within your symptom envelope.
But of course, you must do this in a way that is not too regimented. This is where the subtle differences really matter and where you run the risk of getting lost unless you have gained a deeper understanding of how the illness is triggered. It really requires a more in-depth discussion on the neurological dysfunction underpinning the illness, which is beyond a single article (see the video explanation for a summary).
You see, if you develop ‘expectations’ or ‘mental boundaries’ around your activity, you run the risk of firming the “overstepping of these boundaries” as a trigger for your illness. This is because these boundaries become deeply ingrained in the nervous system as triggers. This happens subconsciously of course.
Think of it like using your peripheral vision. You see things without directly looking at them. In this case, you need to recognise your limitations without really seeing them as boundaries. Almost like you are tricking yourself.
Another way of looking at it would be to do less than you can, less than triggers symptoms, but without actually believing there are any real boundaries. Like choosing to walk (metaphorically if you like in case this is not possible), even though you ‘KNOW’ you can run.
For those that have looked at a range of mind/body training designed to assist in recovery of ME/CFS and Fibromyalgia, this can make much sense and not be new.
If you feel a little lost now or are saying to yourself “You’ve got to be kidding me”, then know that I like you, would have felt like that at these comments before I gained the understanding and experience I have now. It’s always easier to accept things the other side of experience.
If ME/CFS/Fibro was exclusively a physical illness without psychosomatic triggers, life would be a little easier. Just as if it was a psychosomatic illness without real physical triggers. But it is this inescapable mix that creates the challenge and even creates offense unless we have an open mind and a deeper understanding of the subtleties, like the difference between a somatoform disorder like hypochondria and a partially psychosomatic disorder. This can be especially challenging for people who know their illness was initially triggered by a strong physiological triggers at the onset of the illness. I myself was actually triggered primarily by an immunisation .
In the end, you have to ask yourself what is most important to you. What are you prepared to do to get well? Getting emotional or frustrated about seemingly trivial nuances won’t serve you. In the end, it’s about practicing and fine-tuning your approach. Like a wise man once said, “If you always do what you’ve always done you’ll always get what you always got.”