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.”
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Well said Mr Neuffer! I have just experienced the second of Two ‘setback crashes’ but because I am becoming attuned to my body’s signals I believe that I am not only recovering, but am also sure that this recovery process will prevail. Actually, I will explain this by first replacing the phrase ‘ setback crash’ with the phrase ‘condition reminder’ (i.e. remeber that you are ill, so pull back a bit now!). Next I should explain that imho the word ‘therapy’ applied to graded excercise or pacing, should not mean anything strictly regimented at all! So please pace yourselves and… Read more »
Thanks for your feedback.
It’s a subtle line between listening and contantly looking out for symptom signals.
Looks like you have managed to learn the distinction – well done.
Dan, This was a great article. I am already doing this and seeing some progress. Ashok says pacing is an art form and he is right there. If I am out and I expect pain to come when I walk it will. If it does I welcome it and tell myself I am safe and all is well and this is only a shadow of who I really am and it backs down. Graham talks about breathing and this is the key. Long slow breaths really slow everything down. I still have lots of symptoms but I say hello to… Read more »
Thanks for your praise.
Yes, the power of breath is amazing. It was one of my key strategies during my recovery. I think I must have held my breath for 6 years befoer that!
That is one of the main problems I have, holding my breath against the pain. I went through this period where everyone, including me, was sure I had heart disease, because I was so short of breath. Then one day, during an extreme shortness of breath episode, my sister mentioned that I’d just been in some pain. I thought, maybe it is possible that I’m causing my shortness of breath, in a psychological effort to avoid the pain. So, I did some yoga breath work and started reminding myself to breath slowly and deeply when the sharp pains started and… Read more »
I am glad it resonated with you. Yes, our natural reaction to the symptoms exacerbates the problems. The pain in particular is an area where psychological strategies can be very beneficial.
I see you also have found the research demonstrating that people experiencing ME are metabolizing ADP and AMP inappropriately with the resulting metabolic byproducts being unable to be recycled into new ATP. I do not believe this is an inherent mitochondrial problem as our anaerobic capacity would be more affected. Considering the research showing peripheral micro-circulatory dysfunction occurring along with diastolic heart dysfunction, it makes perfect sense that the limited blood flow would be exacerbated during activity. We are able to use the initial anaerobic energy stored in the muscle and thus have normal short term strength and power; but… Read more »
Thank you for your comment Keir – I think you broke the record in terms of length! 🙂 The mechanisms of how the various symtpoms are created, are generally well understood. However, it is easy to get lost in all the details, the real questions is WHY is this happening? To answer this, I wrote CFS Unravelled and created the VIDEO EXPLANATION. It’s my opinion that most of the early recoveries are usually more accidental and result from a change in circumstances along with some physical treatments to reduce the symptoms which reduces the triggering of the primary dysfunction. I… Read more »
Very interesting article, albeit hard to understand. I’m battling PEM and failing at it. I think I’m using graded exercise but apparently I’m not doing it right. I’m a little mystified by the terms coping and recovery. When I’m feeling good, I’m really good. That always leads to crashes however. How do you know when you are truly recovered ?? kind regards /Rickard
Hi Rickard, – I talk about being recovered from Fibromyalgia or CFS/ME when you can engage in normal activity like other people and not experience crashes any longer. Most people when they get there, don’t really announce it for a while, until the build enough experience to feel confident about it. People who understand how and why they recover appear to me to have a stronger sense of staying well.
Hi Dan, Thanks for answering, So if I understand this right I obviously need to manage the disease without crashing. The only way I know is to avoid exercise. You mentioned “expectation”. I’m am very result-driven when it comes to exercise. Maybe that is part of the problem? That I expect too much. Kind of a quick-fix-oriented approach. But it is hard not to. My mind is very focused on recovery and exercise. Because it feels so good when it works. kind regards/Rickard
Yes, that IS part of the problem.
Treat yourself like you would a young child that is ill.
You can’t ‘push it’, you have to create the environment for it to happen.
Dan, I appreciate you articulating your understanding of the nuances of the complexity of this illness. Something only direct experience could give sufficient insight to. I have often gotten confounded by trying to understand the genesis of this condition, which results in a state of constant confusion. The result: I toggle between numerous explanations and treatments and then quickly discard them because it does not explain ALL the downrange cascade of symptoms and vicious cycles. The confusion and subsequent frustration end up becoming one of the most perpetuating illness factors and a major obstacle to healing. You clearly have been… Read more »
Thanks for your comment and kudos.
Diabolical, that’s an emotionally charged word, but I must admit, it fits well when I think back to it all.
What drives me to keep going, is the progress of people touched by the book. I look forward to the day when the new video program helps people take their recovery all the way!
I really hear what you’re saying in terms of how my psychology can be a stumbling block to improvement even though it’s not what caused the condition of FMS itself. What I am not clearly able to see from your article is any practical suggestions for how to make GET and pacing work. I’ve gotten pretty good at pacing myself so that I don’t overdo it when I feel good, and knock myself back into a flare. What I struggle with is those times when I present myself for exercise, get started, and then come over with a wave of… Read more »
Thanks for your question Su. The main point I was trying to make is that pacing is required to avoid set-backs, but that you need to be addressing the whole illness to move towards recovery at the same time. Also, becoming regimented and pacing based on past experience is unhelpful (ie. I can’t do ….) Instead it needs to be more instinctual and based on your CURRENT experience. It’s a fine line and I appreciate your confusion. Perhaps another way to explain it is to pace yourself and increase acitivty as your health allows, but without thinking about it. It’s… Read more »
Dear Sue, I can’t recommend using water for exercise enough. It calms the nervous system and supports the body. The key is to start at only 5 mins in the water and walk around the pool, never swim until you have got to 15 mins and this took me many months. If you want more info see my blog
http://iknowpeoplewhohaverecoveredfromme.blogspot.co.uk/ hope it helps
Hey Dan, Great article thanks! I finally get the cellular level stuff now about ATP/ADP/AMP and I loved the farmer analogy. I noticed that my post-exertional malaise stopped after my naturopath taught me to switch off my ANS by consciously breathing as slowly as I could without having to gasp for breath. This was a big turning point, since it meant I could exercise again and start tackling the fear of exercise that I had developed. To begin graded exercise without learning to switch off the ANS though sounds like disaster in the making to me. Getting out of this… Read more »
Thanks for your insightful comment Graham.
You nailed it. This is an important part of engaging in any exercise.
The EMOTIONAL state is key as is the thought focus. When exercise is performed with the constant expectation of symptom triggering, it becomes a self-fulfilling prophecy. But when we have fun, it’s not front of mind!
Great to see you continue to make progress!
Great article. I have only recently found a gp who has explained mitochondrial dysfunction and it has really helped me to feel better about myself. I have spent so much energy on feeling negative and a t times staryed to believe all the naysayers out there who just dont understand
Thanks for your comment Mim!
Hi Dan, Thank you for your wonderful advice. Listening to the stories and your explanations have been an integral part of my ongoing recovery. I have been unwell with CFS for approx a year but I believe I have had many symptoms for 2 years before that. After visiting your website I decided that this was not going to beat me and from that moment I began to see a gradual improvement in my recovery from basic activity. I was unable to work for 7 months and found it difficult to leave the house. Today is a different story. At… Read more »
Thank you for your positive message.
It sounds like you are well on your way.
Keep going, become another recovery story! 🙂
HI again Dan, I have been using a strict pacing regime and what I guess is in essence a GET programme using water for the past year – I think the water is a really important part of it and I have gone from 5 mins of walking in the water to 23 mins with 3 mins out of every 5 actually swimming. I think having a fixed regime is really important in stopping me from engaging with should I or shouldn’t I stop, get up or whatever; I do it regardless of how I feel and I have actually… Read more »
Hi Sula, It’s great to hear about your progress! Actually, I don’t sit on the fence on the issue. I wrote over 70,000 words on it. However as you can appreciate, that is not very practical to put into a blog. My point was that we can go into the nitty gritty details of all the supportive supplements you are taking, but if the very concern about whether that is working is feeding your symptom thoughts, then it’s counter productive. So just like the GET/Pacing, it needs to be done with a certain type of approach/attitude. Supplementing with the right… Read more »
Hi Dan, I’m not looking for the magic bullet, I’ve already tried many guns and each one chips away, but I have enough insight to know that it goes beyond one magic solution. I also know that not everyone with MECFS hits the wall the way some of us do. A friend of mine has recently been in touch and I discovered she was diagnosed at the same time as me, but she’s got better using a few things that I have tried and one I haven’t. I am now trying the one I haven’t, but still felt envious of… Read more »
Hi Sula, I agree with what you are saying and understand your furstration (& your feelings of frustration). If it makes you feel any better, at my worst I couldn’t get out of bed or even speak! Which sometimes makes me still feel a little surreal to have my life back! Supplements help, but they won’t fix you. Because the supplements don’t address all the ANS trigges. The question you ask is valid and very important – WHAT IS DRIVING YOUR ANS DYSFUNCTION? In some ways, the physical triggers are easier to identify than the psychological triggers, because we don’t… Read more »
Thanx for very confusing article , as well as me/cfs/fm I have terrible pain from diabetic peripheral neuropathy. So very difficult to pace or exercise. But it still sounds to me you or still advocating the. CBT/ GET /GAT regime ! Which I could get my brain to get me out of this awful energy problem.
Hi Dave Thank you very much for your feedback, I really appreciate it! I am sorry you found the article confusing. It is all a bit confusing and the details and nuances often are very subtle and make all the difference. The point is that pacing and increasing activty are very helpful, when done in the right way. Pushing beyond your ability can simply lead to worsening of symtpoms. My point is that it is all about understanding the illness, and suggesting that the illness and reason for the inablity to perform the actions is simply in your mind, is… Read more »
Hi, Dan. I was left confused by this article. Perhaps that means that I havn’t fully understood your book, but, no, actually, I think this issue is confusing. I had somehow got the mesage that exercise was for the point in recovery where you have some very reasonable improvement and yet now I hear a discussion which seems to be saying it is necessary from the word go. I and some of my friend find ourselves at confused.com. I think the term GET is very unhelpful as this is the term used by many GPs in the UK. I believe… Read more »
Hi Patricia. Yes, it is all confusing, no doubt. Many people see GET as a way of return condition, suggesting that you just need to overcome your fear of exercise and address the deconditioning that has occured as a result of that. This is clearly not the case and the point of the article. When pushing the envelope, new symptoms can arrise as you are experiencing. So increasing your activity until this results does not make sense. However, given the neurotlogical associations that trigger the dysfunction (which are numerous), by pacing too vigorously, activities like exercise can become a stronger… Read more »
I really think you are not talking about ME, CFS or FMS, but rather burnout which young people and especially males can recover from by just using a bit of common sense. The former illnesses, especially ME and FMS are of a much more permanent and severe nature with genetic changes and cannot be cured simply by controlling one’s feelings. They also should not be lumped together as they may have similar symptoms but obviously different causes.
Hi Tricia, I appreciate your comment and where you are coming from. Let me assure you that I am talking about ME/CFS/FMS. I know exactly how severe and ‘permanent’ these conditions are, having had them for over 6 years myself. Also, if you look at the recovery interviews, I think you would agree that few people have this condition more severely than Evelyn and that Abigail represents a long-term case, yet both recovered their health. I agree with you that this illness cannot be simply controlled with your feellings, in fact, both the illness and one’s feeling feel pretty OUT… Read more »
Thankyou for your response to my comment, Dan. After feeling confused I think I am starting to understand. Thank goodness these little discussions pull us back into looking again at the concepts , this helps me time and time again. A comment made above somewhere about breathing with exercise struck a chord with me. I have tried many things over my 20+ years of illness, so have picked up lots of different bits of information. Read quite a bit about correct breathing and hyperventilation. Attended a yoga class years ago which had a very big emphasis on yoga breathing together… Read more »
YOU GOT IT!!!!!!!!!!!
This is the interupting of the ANS I am talking about.
Change how you think about, change how you FEEEL – the ANS starts to be retrained!
Thankyou for your comment Dan, I am so pleased!!
I did my own version of GET by trial and error, the trick for me was trying to do the same thing through the week and assessing my energy debt or surplus on friday night. A few weeks in a row of surplus and i would add another notch of activity. And i would call it GAT, A for combined Activity; exercise was only allowed if i was coping with my work load. I also think that there is another reason for people staying within their perceived boundaries which has to do with the Adrenal exhaustion aspect of the condition..… Read more »
Well done for making it your own – that’s great.
You are right about the adrenal function being a big part of that, as well as some other dysfunctions!
The severe set-backs from colds/flu are linked to the adrenal function in my mind. So diet and supplementation during your well-times help rebuild.
Great post, Dan! While I do not have Fibro or CFS, your explanations make sense. From the limited information available on other neurological dysfunctions – as you know my husband has CRPS – your reasoning and approach sound like a recipe for success, even if it is gradual and small. Every case is different, so results will be tailored to each individual’s physical condition and determination. I do believe, from seeing my husband’s level of activity, that it is important to not overdo and to remain aware of the body’s limitations. I do agree with your analogy to peripheral vision.… Read more »
Thanks Lynn. You are one of the unsung heroes. Carers do such an important and difficult job. i appreciate your comment.
Mr. Nueffer, I’m a CFS (22yrs) Fibro (3yrs) individual, who has questioned the connections between the ANS/SNS/CNS, neurological, and other body functions that are directly impacted by these conditions. When the ANS is hindered, the rest of the body systems sort of follow suit. Your blog post confirms and clarifies some of my personal posed inquiries to providers. With underlying relativity to the Blood/brain/barrier thresholds, neurotransmitters, autoimmune dysfunction, it makes sense that the body reacts to both GET/pacing at different levels for each individual case. By these extremely variable and quite elusive conditions (CFS/Fibro/Me) the body systems and cellular structures… Read more »
Thank you very much for your comment.
My aim is to help people like yourself rediscover hope for recovery from ME/CFS and Fibro my sharing insights and a deeper understanding of how the illness works. So it is not about an academic curiousity or a comforting way to cope, but about real action steps towards recovering, even if you have been sick for decades like yourself or Abigail who recovered – http://cfsunravelled.com/another-story-of-someone-who-recovered-from-fibromyalgia-abigail-thurston/
Hi Dan, we talked a bit about this and I told you I don’t know how to respond to this discussion because my physical recovery has been 100% intuitive…when I started looking at discussions about systematically adding exercise early on in my recovery…either graded or paced I glossed over…I ended up just doing my own thing. by following my intuition I now have a developed yoga practice…I walk almost daily, often in the woods/mountains, I swim and I practice ecstatic dance — I do all those things as my body requires…when it asks to do them. I don’t do them… Read more »
Thanks for your comment Monica and all the great articles you share on your site.
Your tapping in to your intuition is really powerful, much better than any rigid structure. This is a key part of the recovery process and creating a healing environment. Many people loose or suppress their intuition, which is unhelpful. Hence I think it’s great how you share your focus on this. If people listen to the recovery interviews, they will see that intuition is a big part of recovery.
Appreciate you adding to the conversation.
Good article. I have paced since the beginning, but my approach is very different now. I used to be really regimented and work it out in my mind, what I should/shouldn’t be doing. It was a confusing battle. Now my pacing is more adaptive and free flowing and I use body mindfulness adapted from Buddhist/Taoist mindfulness, which is less loaded. Less thinking, more being, more allowing, more lovingly detached observing, more listening, more kindness. My pacing used to be a bit brutal. lol. (I was very hard on myself as desperate to get well. Wellness is still my goal, but… Read more »
I THINK EVERYONE SHOULD READ YOUR COMMENT! Jen, the subtle differences you speak off are very much spot on in my view. Of course, you can’t ‘harm yourself’ to recover. Pushing and grading activity like that won’t work for the reasons explained. And with regards to CBT, well it all depends on the angle that is taken. Of course suggesting it’s all in your head makes no sense, but reconditioning your limbic brain response and your neuroassociation is KEY TO RECOVERY! I used meditation to create a base and then NLP to make the changes, but as you said, diet… Read more »
if GET works: it’s CFS
if it makes you worse: you have ME
Thanks for your thoughts.
It’s my view that CFS and ME are different labels for the same illness.
Chronic fatigue on the other hand is something completely different.
I think a lot of people who see CFS and ME as different, are treating the term CFS as meaning chronic fatigue!?
The syndrome is what describes the illness that includes all the symptoms we experience.
Than you for the valuable information Dan. For those who suffer from Lupus and CFS/ME it’s a complicated situation because the CFS/ME is chronic. Lupus comes with CFS as it is and Fibromyalgia is secondary to Lupus and generally is found with many Lupus patients.
I find this information very resourceful and will share it with my Lupus Support group.
Thank you for providing this information and keep up the good work!
Thanks for your comment Regina
Dear Dan When I got diagnosed with ME/CFS by a locum GP here in England the NHS ME/CFS service sent me on a six session fortnightly course. Run by a physiotherapist and a Psychologist. The Physio seemed to me to be overly keen on GET and GAT. One of the sessions was about exercising daily gradually building up muscle tone etc , but I was not unfit just extremely short of energy. Still can not see were it fits in to recovery when energy is my major issue. As I type this have just had a total system failure due… Read more »
Hi Dave – thanks for your poignant comment! You have hit it on the head, of course it was not about conditioning and no build up of muscle tone or fitness will fix your problem, because of course the problem was never caused by any lack of conditioning or muscle tone. It’s about treating the cause, what is causing the lack of energy and muscle tone?!?! The ANS of course. Hence your focus on nutrition and the Gupta Programme are excellent strategies. An appropriate form of GET may be appropraite at some time as part of yoru total program, but… Read more »
Hi Dan, Thanks – very interesting blog post, and this squares with my experience as well. There is a subtle distinction between listening to one’s body and focussing on symptoms. It is as if we need to first use intuition to tune into the body’s signals, doing this VERY BRIEFLY, but then immediately distract into something else. Any lingering attention on the body that has even a modicum of negativity or a negative representation can perpetuate the illness. And, I keep reading everywhere that recovery is all about having more fun, and engaging distractions. Easier said than done when you’re… Read more »
Thanks for your excellent comment Jesse – what you say about fun is so true, we lose our connection to life when we are sick enough, and the fun side of us gets very subdued. Awakening our joy in life is certainly part of the recovery story!
Hi Dan and others, So 7 years ago, I was mysteriously poorly for 2 years. Didn’t have obvious fatigue, but a lot of pain, dizziness. After the usual to-ing and fro-ing to the doctors etc with no useful help (and actually created more stress), I decided to go it alone, developed a level of acceptance, meditated, did the graded exercise by swimming – and increasing when my mind and body could cope with it, learned breathing techniques and how to calm myself when experiencing symptoms. I got well. Except I hadn’t made the link, between stress and my experience. I… Read more »
Glad the explanation for ME/CFS & Fibro resonated with you and that you have made such great progress!
Thanks for your comment. Wishing you continued improvement in your health.
Dan the Man! Thanks for this great article. I have read your amazing book CFS Unraveled and use Gupta Retraining techniques, and I’m well on the road to my 100% thanks to you and Gupta. I have recently got over a quite strong head cold, with no CFS symptoms, which is the first time I have had an illness like a cold with no symptoms of CFS! I currently go to the Gym and work out 3 times a week now, as you recommend in the book I have started with mainly strength/weight training exercises first, and grading in aerobic… Read more »
Thanks Mav for your wonderful comments.
Great to hear that you have put together the distinctions and are benefitting from taking consistent action with a positive expectation.
Hope to be able to share our recovery story some time next year!
Dan the Man
Hi Dan, I find this very interesting reading, thank you.
I’m about to do the Lightning Process and wonder now how it can poss. work after all I’m reading here re. CFS/ME. Do you recommend doing the training?
Absolutely it can work – in fact both Simon and Berit recovered using the lightening process. I believe in a multi-lateral approach, however, often a focussed approach that just focusses on the psychological and mind/body aspects of the ANS dysfunction can be effective as these are perhaps the most powerful & persistent triggers!
Dear Dan, I would just like to say how wonderful your website and advice is. I caught ME/CFS about 6 years ago and it took me two years to recover. In the end it was exercise that stimulated my energy and recovery, just being able to walk and enjoy going out again after six months of being bedbound was one of the greatest pleasures. The reason it took me so long to recover was perpetual fear of going back into a crash and constantly experiencing negative thoughts and not dealing with my ANS problems. I recovered completely for 4 years… Read more »
Thanks for your positive comments J – yes, nothing like personal experience to really understand the subtelties around how to use exercise to recover from ME/CFS & FIbromyalgia. It would be nice to share your recovery story one day when your recovery is more robust again.
I’m clearly playing “catch-up” with your website, and have not yet read your book. (I have ordered it.) In the last few months I’ve come to realize that I am likely dealing with symptoms associated with CFS. This post and the ensuing comment thread is interesting to me because of the discussion around limits and perceived limits for recovery. I believe I came to where I am now through the unhappy confluence of my personality type (push-push, overcome, don’t stop) and an experience with the antibiotic ciprofloxacin four years ago. I became extremely ill, weak, and brain-dysfunctional, with considerable fatigue,… Read more »
Hi Vicky, thank you for your comment. ME/CFS & Fibromyalgia certainly is a journey, often filled with frustration and quite some self-discovery. Creating a healing environment is key for recovery, as is understanding some of the more subtle thought patterns and physiological triggers that can trigger ANS dysfunction once the condition has established. I hope you find the explanation videos on how recovery happens useful also! 🙂
“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.” …You just described pacing. The ANS dysfunction is not the underlying cause of the disease, it is an effect of the underlying disease which is most likely caused by persistent immune activation due to chronic infection of the CNS and other tissues. If we were “subconsciously” limiting ourselves then how would we crash the first time around if we had no idea what our limits were?… Read more »
Thank you for your excellent comment. The distinctions between what is so helpful and what is detrimental is so fine that often the opposite sides of an argument are actually on the same page, which many realise once they look at the details. So let me say that I do think pacing is very important, but the manner in which it is done is even more important. It’s the same with ‘graded’ exercise. I don’t like the word graded, because it implies you should be regimently increasing bit by bit, which most of us can attest to will inevitably lead… Read more »
I’m opposed to any view that attributes any aspect of this disease to psychogenic/psychosomatic/functional/whatever you what to call it causes because there is no evidence for this and it’s actually impossible to prove with our current knowledge of the human brain. We have to keep in mind that due to the metabolic abnormalities present in this disease, some of us are actually exercising just by simply existing due to the early switch to anaerobic metabolism that can occur even doing normal ADLs, or simply being awake in the severe cases. Compound this with the fact that many patients have co-morbid… Read more »
I mostly agree with your second paragraph, however, I think think there would be very few people agreeing with your first paragraph. In fact, I would be very surprised indeed if you yourself do not experience a worsening in your symptoms during periods of psychological (either mental from too much exertion or emotional) stress. This is a well known phenomenon. Perhaps you don’t recognise that this is psychosomatic – like heart attacks – these are often also psychosomatic – like IBS and many many other conditions. What I agree with is that it is not purely psychosomatic, because physiological stressors… Read more »
Hi Dan, Firstly, thanks for an amazing website which I am going through now…and all the insights and explanations which make so much sense. And thanks for this excellent article. I was referred by my G.P to an exercise physiologist who specialises in CFS and uses graded exercise for recovery. While I found it very useful to keep a daily log of energy expenditure which was required and the gradual lessons they introduced in each session to teach me how to manage stress, stress triggers and my energy output and crashes, it was all really about management and not recovery.… Read more »
Hi Sarah, It is frustrating when things don’t work out. The point is that we need to address all our major triggers and retrain our nervous system to function normally whilst supporting our body to heal. There are multiple reasons for the fatigue in ME/CFS/FMS, and where severe physiological dysfunction exists, intervention may be required. I discuss this in some detail in the ANS REWIRE recovery program. The distinctions between success and failure are very subtle and require some depth of understanding, which makes this topic very frustrating. I have seen GET work, particular for people with less fatigue (like… Read more »
Dan, I love your depth of explanation! I go for walks. I try to follow your advice and not worry about how far, how fast. 5 months of walking and I just did a 3 hour hike up to a local peak and back, chatting with a friend the whole way. No crash, just tired as I should be, climbing a mountain and all:)
Great to hear Chris – thanks for sharing!
Hi Dan, Important information! Thank you! I have been ill for years, gradually getting worse and I was in denial for a long time, also because, when I had good days, people can’t believe there is something wrong with me. I am working with a ergo therapist now on how to pace but I realise now that I am impatient and when I crash it’s largely because of emotional stress like not being able to go to important things like for example the funeral of an uncle……..and the idea that people just don’t understand and think I am a drama… Read more »
Hi Heleen, Great to hear you making deeper realisations into what’s going on. Indeed it becomes challenging to take a sensible approach because when we are ill so long, we change our perspective and expectations of what is reasonable. Trying to help people understand you seems like a futile task at times – I think it’s often better to just minimise the conflict and not worry about what others think – of course, that’s easier said than done at times, especially around emotional events. I discuss the approach in some detail in ANS REWIRE – but yes, having a relaxed… Read more »
im no medical expert, but ive lived with cfs/fm all my life. nearly 50 yr although the name changes overtime my condition does not get better. i used to be very active and ignored the pain. i loved extreme sports and cant accept i wasnt enthusiastic about exercise. i also was accustomed to breaking limbs…..but slowly and gradually as i hit my mid twenties i had to slow down until my body crashed around 25 (from a dental preceedure). i used GET to build back up after 6months of a dream like state. At the time i had my dream… Read more »
Can you tell me why then I hear about a gallery opening (one of my favorite things) that one of my friends is having and I tell her I will see her there but before I can even get there I am too tired to drive! I was not thinking about pain. I was excited and wanted to go. I wound up disappointing my friend and myself.
Because we are triggered by too much activity. Flare ups are NOT imagined or ‘psychological’ – these are real physical processes and understanding how and WHY they come about is key to resolving them and recovering from ME/CFS/Fibromyalgia/POTS.
Keep it simple get a heart rate monitor and use objective data on manage activity. If you sleeping HR is up you did too much the day before and most. Likely your sleep quality and quantity is compromised.
Rest enough to have good sleep data. Do anaerobic exercises under anaerobic threshold.
Hi Dan, I am a “graduate” of your book and video course. I am about 99 percent recovered. The five years between crashes ended with my graduated exercise routine and not paying attention to my energy level. Not only with exercise but with all aspects of my life. I thought I was superwoman and never anticipated another crash. That was when I found you online. I have not returned to my exercise routine yet and might never go back to the level I was doing. I am painfully aware of my energyl level all of the time. What helps me… Read more »
Thanks for your comment Susan.
It’s wonderful to hear that you recovered your health using ANS REWIRE.
Take your time to adjust and enjoy a healthy way of engaging with life. Hope to share your testimonial/recovery story one day soon. 🙂
Makes sense. I’ve been coming to a similar conclusion, naturally. I figure I would do body weight exercises and only 1 set of each vs undertaking a faster, more vigorous workout that utilizes various pieces of equipment including dumbbells. Using light bands for the exercises that are for physical therapy vs the heavy weight bands I know I can use and did use while in PT a couple of months ago. Trying a pilates or yoga-type of stretching workout rather than another higher energy/low impact workout. Including an element of focus and relaxation. Focusing on learning to breathe properly to… Read more »
I believe it’s caused by toxins: vaccines, glyphosphate in food, chlorine in water, air pollution….detox is very important
Many things trigger people becoming with ME/CFS, Fibromyalgia and POTS.
But the question is, why are they DIFFERENT?
Not everyone has detox issues!
Hence a more comprehensive explanation for the root cause of the illness is required as I outline here.
Hi your titles sound alarmist and negative. Why frame it that way? Why not call it “How to make Pacing work for you” and “How to use GET in your recovery” ??
I guess it was first called that because GET is a little bit controversial in the community and many people see exercise as detrimental.
I am never that sure what to call posts or how to best structure the website – so thanks for the feedback.
Kieran makes a good point! Having just read this again following my full recovery, I can really appreciate the differences in how the brain will interpret what you’ve written compared to when I first read it when I was “recoverING”! As I now try to advocate recovery I’d love to share this but it’s the title that’s off-putting. How can we reach those who are more severely affected with CFS/ME/FMS? They’ve experienced so much “non-acceptance” of actually being ill and (especially here in UK) lived through all the negativity regarding GET and the PACE Trial, that they have an auto-response… Read more »
What do you think is a better title that conveys the article and sparks interest?