CFS/ME Management and Recovery
In my desperate search for answers and treatment for this awful condition, like many sufferers I suspect, I have come across many snake oil sellers and charlatans who prey on vulnerability. I find this utterly abominable, and it sickens me to think that they make a living off the back of others in pain. Therefore, before I begin to describe how I learned to manage my condition and find the path to recovery, let me first apologise in advance because I have start by being very blunt - there is no quick fix!
The recovery time will vary from person to person and often will depend on how long you have been suffering, the further your have slipped into the pit, so to speak, the longer the climb back out again. Or using the analogy in my book, the further you have wandered off the path and deeper into the forest, the longer it may take to get back to the clearing.
The good news is, continue to follow the guidance below and in time YOU WILL be able to MANAGE your condition and eventually RECOVER.
Picking up again with the onion analogy, you have to peel off the layers one at a time, starting with the oldest outer layer. My personal image of this is illustrated below.
CFS Manage and Recover - Onion
Step 1: Remove the Triggers
If you haven’t already done so then identify the triggers that led to the onset of your condition.
Was it a physical trauma, injury, virus or infection? If so, has it been fully treated? If not an injury, visit you GP and request tests to determine if the virus/infection has cleared. Please note that standard blood tests may be inadequate for some viruses, but start with these and consider paying for more detailed tests if you are not completely convinced.
If your condition was triggered by an emotional trauma, seek professional help to ensure that you have truly dealt with it. Many traumas can be very deep seated and stem back from a childhood event that you have suppressed and long forgotten about – you must let such traumas out to stand any chance of recovery.
The aim is to reduce the stress, physical or mental, that your body has so far found difficult to deal with.
Step 2: Relax Your Mind
Once the triggers have been eliminated it is then possible to calm the mind, or more specifically the amygdala to encourage your subconscious to return to the parasympathetic state. Repeatedly visiting this state through meditation, deep breathing exercises, a relaxing pursuit, spending time with nature in the garden or on a country walk, will gradually convince your subconscious mind that the threat has indeed passed and it is safe to return to the relaxed state.
Be warned though, a full and lasting return to this relaxed state is not going to be easy to achieve. Having operated in the ‘fight or flight mode’ for so long, the mind becomes hardwired through repetition, carving pathways or neural connections that are difficult to break. Fortunately, the human brain can rewire itself through the natural process of neuroplasticity.
By repeatedly undertaking practices that calm the mind, we can make new neural connective pathways and eventually the subconscious will begin to use these pathways in preference to those created in the ‘fight or flight’ state.
Personally, I prefer a meditation method called ‘Tapping’ - minimum of 15 minutes per day. Essentially, while I meditate, I tap on a number of points in my upper body, to increase energy flow along the associated meridians – this is based on similar principles to acupuncture. Also and key, that by gently tapping on these points in a set sequence, whilst focusing on the subject of my meditation, say pain, I am allowing my mind to rationalise it - I am listening to my body and allowing it to convey those pain signals, rather than trying, as I have in the past, to suppress these signals. Similar to releasing a trauma, I am exercising the issue and letting it out.
I know, it may seem counter-intuitive and somewhat scary to focus on your symptoms, but believe me, it really works.
There are many meditation sources out there but personally I prefer ‘The Tapping Solution’. It is available as a mobile app that I can use anywhere.
https://www.thetappingsolution.com/
In addition to relaxation, you must learn to rest when feeling tired, and reduce whenever possible the sensory overload on your mind. As an estimated 80% of signals received by the brain are through the eyes. I find spending 10 minutes or so daily either meditating or just sitting in a quiet space with my eyes closed, ideally in the garden, works best.
Step 3: Diet and Supplementation
Calming the subconscious mind through relaxing pursuits like meditation is fundamental to recovery but this can take some time and is often hindered by the continuity of uncomfortable symptoms, many of which are due to the HPA axis dysfunction.
Therefore, once you have established a calming routine i.e. peeled the first layer, it is then extremely important to start work on the next and begin, managing HPA axis symptoms a little better through diet and, if necessary, natural supplementation. Longer term I suspect you will find, like I did, that dietary improvements will become another fundamental weapon in your arsenal for recovery.
Avoid medication(s) if possible, you don’t need them to treat CFS/ME. If you have other unrelated health issues then my advice is to have an open and honest discussion with your GP to determine what you actually need, minimising the associated dosage. The reason is that medications, whilst aiming to address one symptom often exacerbate others, adding more toxins to the mix and worse, can have unwanted side-effects. Your body has enough to deal with so adding to the toxin overload is not going to help.
The cornerstones of my diet are:
· Avoid refined carbohydrates such as white flour. Refined carbohydrate readily converts to sugar, an excess that most people don’t need and, latest research suggests, may be the root cause of so many ‘modern’ serious illnesses facing the western world today e.g. heart disease, diabetes and cancer. Good carbs are found in dark leafy green vegetables e.g. broccoli, kale and spinach. Just reducing or removing sugar from cereal, hot beverages and sweets is not enough.
· Do not cook with vegetable oils (compressed plant oils), they may sound healthy from the name but they are far from it. The reality is that the composition of vegetable oil breaks down under high heat, converting to extremely damaging PUFAs (polyunsaturated fatty acids), high in unhealthy omega 6. I use extra virgin olive oil from a glass container, it contains healthy omega 3 and performs much better under heat.
· Follow a high protein low carbohydrate diet. Ideally your dinner plate proportions should be two thirds protein, one third carbohydrate (the healthy ones).
· Buy organic produce if you can afford it, ideally from a free-range farm shop – try to avoid sourcing from supermarkets, the labeling can be misleading.
· Eat oily fish (omega 3) and chicken in preference to red meats. Red meats are fine in lower quantities.
· Crack an egg every day – they are loaded with protein and other necessary fats. Don’t listen to the outdated cholesterol argument, the content in an egg is tiny compared to the many benefits. Take it from me, having done a lot of research on the subject of cardiovascular disease.
· Avoid polyunsaturated products like margarine, (PUFAs again) – choose real, ideally organic butter. Don’t be swayed by the ‘avoid saturated fats’ argument, we need them!
· Slow cook meat, ideally on the bone, to release the goodness of the marrow and soft tissues – use the stock produced in soups and sauces such as gravy.
· Get into the habit of making a daily fruit and vegetable smoothie. This provides your body with an infusion of mixed vitamins. I use what ever is available and fresh such as banana, orange, pear, blueberry, mango, mixed fruits, avocado, celery, spinach, pomegranate, pumpkin, flax and chia seeds, mixed with filtered water.
· Introduce fermented foods to your diet e.g. mushrooms, natural Greek yogurt and sauerkraut.
· Drink plenty of water (2 litres per day – more if you are thirsty) to support digestion and general health.
There are plenty of good books and articles out there to support the development of a healthy diet plan, but you can’t beat consulting a qualified nutritionist to really understand what would be best for your body.
This brings me on to supplementation. You may find, as I did, following detailed blood analysis, that my mineral levels were quite unbalanced and deficient in a number of areas – probably as a consequence of sustained HPA axis dysfunction.
I am very lucky to have found a nutritionist living near to me that is familiar with and has had success in treating CFS/ME.
Tailored to my specific needs, my nutritionist has guided me with dietary and supplement plans that have helped, may be even accelerated my recover progress.
Currently I only take a few daily supplements to increase my magnesium (often levels decrease as we age), vitamin D which northwestern Europeans tend to be low in due to limited sunlight exposure and CoQ10 which supports vascular and cellular health. More recently I have added supplements to support and improve my under-performing mitochondria, which leads nicely into Step 4.
Step 4: Support your Mitochondria.
As mentioned in my last post, chronic (lasting more than 6 months) HPA axis dysfunction will ultimately have an impact on our cellular energy source, the microscopic mitochondria and their performance – remember, mitochondria are our cell’s power houses.
A prolonged under performance of mitochondria can lead to cell apoptosis (cell kamikaze, essentially the essence of disease and/or old age biological decline), a pre-programmed suicide directed by the cell nucleus, aimed at killing off bad cells in favour of the healthy.
For the CFS/ME suffer this is a grim realisation that I am sure, like me, anyone would be keen to avoid and, if possible, reverse. The good news is that you can.
As previously stated, the mitochondria convert fuels (nutrients and oxygen), received via the blood stream, into ATP (cell energy) necessary to undertake healthy cell function. If there is a disruption of this fuel supply then the mitochondria cannot perform efficiently, leading to under or over ATP production. Under production will result in energy slumps and limit the sufferer’s normal bodily function and therefore activity range and endurance.
This irregular ATP production not only affects the sufferer’s ability to perform normal daily tasks but can also affect sleep quality, severely interrupting the necessary restore and repair processes. This is due to peaks in ATP production at night, which can raise body temperature, lifting the individual out of normal slumber to awake tired but restless - often referred to as ‘tired but wired’. In addition, an excess of ATP that cannot be used will result in destructive free radical release and overload the inbuilt cell clean up processes.
So, how can we address this irregular mitochondrial performance and peel back the final and deepest layer?
· Firstly, accept that until you achieve full recovery, your condition will cycle, with mitochondrial performance being sub-optimal – accepting this will allow you to better manage and support the improvement of mitochondria health.
· Understand your symptom cycle and especially what exacerbates them. Armed with this knowledge you can remove or at least significantly reduce these factors, whether they be mental stressors, dietary impacts or physical activity.
· As CFS/ME sufferers, we have to learn to work within our available energy limits. We only have so much fuel in the tank (or should I say mitochondria output), as we don’t fully recharge at night. ‘Bouncing the boundaries’, as it often referred to means only doing as much as you can during the day to avoid triggering a slump and increase in symptom severity. Once your mitochondrial performance starts to improve, you can ‘bounce’ or extend your current boundary a little and see how your body reacts. Patience is the name of the game here and this can often be the hardest part for the ‘achiever’ type.
· Within your current ‘boundary’, ensure you establish a daily exercise routine – even though there may be days when you just don’t feel like it. PLEASE do not follow a ‘Graduated Exercise Therapy’ (GET) programme – few physiotherapist and other rehabilitation professionals understand CFS/ME and may prescribe GET. Recent NICE guidelines have changed, advising to avoid GET for CFS/ME sufferers, as it usually leads to a worsening of symptoms and a longer recovery. In the early days of my recovery, I found that a 15 to 30 minute morning walk after breakfast works well for me - a practice I still try to maintain. Not only does it give me a dose of much needed vitamin D and mild exercise but also, I understand from research, helps to balance blood sugar and cortisol release.
· Aim for quality sleep, not easy I know, but the better we sleep the greater the positive impact on mitochondrial performance and consequent battery recharge, bodily repair and restore. I cannot stress enough how important this is for everyone’s ‘general’ health and therefore extremely so for CFS/ME recovery.
My wife and I have established a regular evening routine ahead of retiring to bed:
· We try to go to bed at the same time every night, only occasionally breaking the pattern if travelling or socialising.
· We cool our bedroom to around 18 deg C
· We do not eat at least 1 hour before bedtime.
· We avoid screen inputs (blue light) t least 30 mins before bedtime.
· The artificial light sources in the bedroom are removed or covered, and we have good quality blinds on the windows.
As has been said by many people with this condition, at first you are ‘hoping’ for a cure, then once you identify your condition and seek professional help or the guidance of others you begin to understand and start to ‘believe’ you can recover. Once you start to see, or maybe I should say feel, the shoots of recovery then you progress to ‘knowing’ that you can recover.
One final point to note, recovery from CFS/ME is a little like playing ‘snakes and ladders’, albeit a lot less fun. There will be times when you feel like you are making real progress only to step on the head of a snake and slip back again. But don’t despair, just ‘knowing’ that you can and have improved before will spur you on, and knowing how to manage your condition gives you a distinct advantage because in this game you can roll the dice and then decide whether it would be beneficial to move, therefore avoiding the snakes.
I have included below a list of publications that I have found extremely useful in developing my understanding and treatment of my condition, and I would urge you to develop your own library of understanding. My golden rule is not to blindly believe everything I read or hear from a single source, rather develop a ‘Venn Diagram’ of understanding i.e. overlapping guidance from multiple unrelated sources and act on that only.
• Finding Freedom - Escaping from the Prison of Chronic Fatigue Syndrome by Raelan Agle
• Decode Your Fatigue by Alex Howard (founder of Optimal Health Clinic)
• The Divided Mind by John E Sarno
• The Tapping Solution by Nick Ortner
• Why We Sleep by Mathew Walker
• The Inflammation Syndrome by Jack Challem
• The Brain that Changes Itself by Norman Dodge
• Mitochondria and the Future of Medicine by Lee Know
• The DNA Restart by Sharon Moalem
• On a Scale from 1 to 10 by J M Georgesson
As I am sure you realise, this final publication is my own. My experience and research the basis of my ‘Venn Diagram’, and the source of this blog series which I sincerely hope will prove helpful to you.
Good luck on your journey fellow sufferer. I wish you a speedy recovery and the regaining of the quality of life that you so long for and deserve.
Remember, you are not alone anymore.
