August 7, 2023 - CFS Unravelled

TIMESTAMPS00:00 Introduction01:07 Why understanding this matters01:56 Are there cures or effective treatments 05:09 Surprising reality of people recovering 05:33 How recovery is possible without a cure06:20 5 things you likely know from your experience11:49 How is it possible people make a full recoveryLearn MoreClick on these links to learn more about Dan's book CFS Unravelled and his ANS REWIRE recovery program.TranscriptWe get sick, we go to the doctor, and if we’re lucky, we get diagnosed early and don’t wonder aimlessly for years, only to eventually be told that there is no cure – that’s that. So what’s this talk about people recovering? I thought there is no cure, how is that possible? Did these ‘recovered’ people really have the illness? Did they find the ‘secret’ cure? What’s going on?Well, it’s confusing isn’t it – to be frank, I never had that problem because when I was sick, I didn’t know that recovery was possible. That’s why I started to share recovery interviews at a time when no such thing existed on the internet. A decade later, the internet is full of such stories, but big questions remain.Now, it’s important to realise that these sorts of contradictions can really halt us in our tracks, they can waste years. So, it’s essential – it’s critical, that you get this right now. Getting educated, understanding how this works is centre to you making changes to improve your well-being now. That’s why the ANS REWIRE education and training program has received praise and referrals from doctors from all over the world and is supporting patients now in over 60 countries in their recovery since 2016.OK, so let’s get into it.Let’s start by acknowledging the fact that there is no cure for Fibromyalgia, ME/CFS, POTS, Multiple Chemical Sensitivities (MCS) or related syndromes.However, the first problem is this misconception about ‘cures’ – this is a word I really don’t like, I don’t feel that the idea or concept it provokes in our minds is something that exists for many, if any conditions.Now ask yourself, what treatment do you know of that cures a condition? Maybe a bacterial infection with antibiotics, but then how do you know it won’t come back in a week or two?Just ask someone experiencing chronic ear infections whether they see that treatment as a cure!Even something more absolute like appendicitis – is surgery a cure? Well, it’s hard to imagine getting appendicitis twice, but you could get a stump infection and you’ve got a pretty good chance of developing adhesive disease. So you could say it’s a cure, but the cure might create another disease.What illnesses are there cures for? Diabetes? Parkinsons’, Alzheimers, MS, Heart Disease – where are these magic ‘cures’ everyone speaks off? My question is why do we even use this word?And for cancer, some treatments are described as cures when the patient is in remission for 5 years – but is that really a cure in the way that we think about it? If someone is sick 5 years later and dies – do you think that’s really what a cure is?Even simpler things like a broken arm, a cut – where are the cures? There’s not many cures, right? But we do have treatments, sometimes very helpful treatments, sometimes less helpful treatments. Getting your arm set correctly to ensure your body can heal it - wow that’s certainly amazingly important and helpful – but is it a cure? Ultimately it’s your body that has to do the healing, right?Hopefully as you reflect on this, you realise that this idea of cures is a bit misguided – so perhaps it’s time to let go of the idea of waiting for some magic cure to arrive.That’s not to say that we can’t find more effective treatments – absolutely not – if you have followed the podcast you will have heard some of the amazing breakthroughs by top scientists and physicians from around the world.But what is really important to understand is that none of these treatments improve all patients equally. And perhaps even more important for this group of illnesses, is realising that we can actually recover our health, return to normal functioning without the existence of some magic panacea cure.Surprised? Shocked? Confused?Okay, so let’s explore how this is possible.And rather than coming at it from some complex technical description for the pathogenesis or pathophysiology of the illness – which you can see in the explanation videos or ANS REWIRE intro lessons, both of which I will link below, I will explain from a common sense perspective. Specifically, from your perspective and the day-to-day experiences you have most likely had if you have one of these illnesses. So these are things you know to be a fact based, things you know to be true from your everyday experience.So let’s start with these considerations.1.)We experience triggers:If you’ve had this illness some time, you will have noticed that certain things make you feel worse. These things are called triggers. They might be things like doing too much, like physical activity or exercise or physical work. Or it could be other physical triggers like getting an infection, which can happen a lot if the immune system isn’t working quite right. Or they could be things like eating certain foods, skipping meals or eating too much.Other triggers might be mental activity like studying or something else that needs mental concentration or it could be other jobs that you do. Mental strain could also include talking with people, being in busy places or being on computers or phones. And that starts to take us into other triggers, neurological triggers where things can start to get a little bit weird – so like too much noise, too many bright lights, even smells, even seemingly unnoticeable things like barometric pressure changes when the weather turns.2.)Trigger Sensitivity Varies:At times, these triggers seem to be worse then other times. Yes? So sometimes you experience these triggers, even slightly and you get a big flare up right away – and at other times you are not so sensitive. These periods when you are not so easily triggered into a flare-up or worsening, are often times where your overall health has been a little bit better. The vast majority of people notice, that over time, there are periods where they are worse and periods where they are a bit better – so we know for a fact, that things can be better, at least for a time!3.)We can take Recovery Action Steps: Now there are many more triggers, but if you can learn what your specific triggers are, and you reduce your exposure to them, then it goes to follow that you will feel a little better – that’s a recovery action step. And you may even notice, that when you are not triggered into flare-ups all the time, then you start to feel better overall, and also, you’re not so easily triggered into flare-ups – so that’s starting to build resilience. This represents your nervous system learning to react differently to these stimuli. You might describe this as a partial recovery.So presumably, you have experienced, or seen others experience, how at some time there was a significant amount of recovery progress. You may have seen people go from being bed or housebound to starting to function more normally. They’re not cured of course, they still get flare-ups, they still have symptoms, they still need to be careful about what they can do, but they can do much more.If you have listened to the recovery interviews, you will see how people build such progress by addressing their individual triggers. Let me say that again; you will see how people build such progress by addressing their… individual triggers. Let’s look what learnings you can gain from some examples.If a person that progressed with their recovery was triggered by a bodily dysfunction from the illness, such as severe gut dysbiosis or parasites and they progressed by treating these gut issues, that makes sense. But of course if your gut is fine, then of course such a treatment isn’t going to benefit you.Or if a person that progressed with their recovery also had PTSD, severe anxiety or depression, and these problems triggered their symptoms and led to flare-ups, well, if you don’t have any such issues, then of course such treatments aren’t going to work for you!So hopefully it’s becoming clear why we don’t have some panacea, one-fits-all cure – it’s about a tailored approach. That’s why when someone gets better with their amazing ‘cure’, it tends to not work for you! But it doesn’t mean it didn’t work for them or that they didn’t have the same illness as you. It just means they had different triggers.[Learning 1.) We have to address our individual triggers and dysfunctions.Removing triggers and recognising that people can improve their well-being is only part of the answer isn’t it. The question is, how is it possible that people make a full recovery and no longer get flare-ups when they are exposed to triggers? And does that mean that they can’t get sick again?Well we already know from our own experience, that at times we can be less triggered into flare-ups and sometimes more triggered. So a full recovery is really just an extension of this. Where we go from being very triggered to being less triggered, to slightly triggered to not triggered at all.[Learning 2.) Recovery exists on a progressive scale.But the big question is, Why do these triggers and flare ups exist in the first place?The issue with these conditions, is that not only are there many many physical dysfunctions in the body, which vary between patients, but there also is a problem with the nervous system which is driving these dysfunctions and which is behind this triggering. The nervous system controls your hormone levels, your immune system, your gut function, your heart rate and so on – it controls all the bodily processes via the autonomic nervous system. So whilst the way the nervous system can react to triggers can change over time, focussing on helping it behave normally is key for people’s recovery – and this is called neuroplasticity, the ability for the nervous system to change how it functions. In fact, unhelpful negative neuroplasticity is what led to this problem in the first place, to a state where you experience central sensitisation and hence the increase in symptoms like pain, uncomfortable feelings in your body like your gut, and discomfort around stimulation like on your skin, sounds, lights, smells and so on.With these insights, the stories you hear about people making partial or full recoveries will hopefully start to make more sense to you. The people that recover clearly address their individual triggers, reducing the ‘noise’ on their nervous system so to say allowing their nervous system to become less reactive. In many cases, they actually do focussed training on their nervous system to help the process along.[Learning 3.) The nervous system is reconditioned to behave normally.I encourage you to check out the old explanation video series on YouTube or the more comprehensive free ANS REWIRE intro lessons to understand more about how all this works.And of course, check out all the recovery stories. You will see I go into a lot of detail, really teasing out how people exactly got ill, what their symptoms are and what they did to recover. As you learn more, you’ll see that what they did is often more than the obvious steps they describe and how it usually contains some kind of neural training to affect neuroplasticity, whether they realise this or not.So, we’re not talking about cured, we’re talking about being fully well again. Does that mean that somebody would never be able to get sick again? Of course, it doesn’t. But it means that we can get our lives back both partial and full recovery.So, what do you think?Does that finally make it clear for you how people recover even though we have no “cure”?Do you still think that you need to hold out for some cure – do you think it’s likely to happen anytime soon?I’d love to get your thoughts.Until next time, reminding you to prioritise yourself and your wellbeing and to learn how the process of recovery occurs. And remember always be kind to yourself.

How Can People Recover from ME/CFS, Fibromyalgia, POTS, PVFS, MCS – WITHOUT a Cure?