Mainstream medicine has very little to offer people with chronic fatigue syndrome.
There’s 3 treatments your doctor probably hasn’t told you about.
Their approach is to manage the condition using symptom suppressing drugs such as anti-anxiety medication or painkillers.
With doctors offering no chance of a recovery many patients explore alternative options.
Can you recover from chronic fatigue syndrome?
The short answer is yes! While recovery rates are very low, ME Action puts them at only 5%,
They also note that around 40% of sufferers experience significant improvement.
So what are these people doing to regain their health?
There are three key treatments that appear in the vast majority of online stories: regulating (also called pacing) functional medicine and brain retraining.
Let’s look at each of these in more detail.
Regulating (Pacing or Managing)
If you are constantly overexerting yourself and using more energy than your body has available, you will crash.
This boom and bust cycle is very familiar to anyone who has ME/CFS.
The key to improving your health is to stabilize your energy levels and avoid the boom and bust pattern.
The pacing strategy involves finding your baseline. This is the level of activity you can do without exacerbating your symptoms.
The aim is to keep all your activity below this level, ideally somewhere between 50% and 75%.
For example, if you can walk for 10 minutes before triggering your symptoms, then you would aim to walk between five and 7.5 minutes.
By not walking to your maximum capacity of 10 minutes you always have some energy in reserve.
Over time these energy reserves will build up and increase your stamina.
While some doctors may be familiar with the concept of pacing, many will prescribe graded exercise instead.
The difference between the two is that with pacing you listen to your body and only increase your activity level as and when you feel able.
If the increase exacerbates symptoms you then decrease again to a more manageable level.
With graded exercise you increase at regular intervals, and symptom exacerbation is ignored.
This leads to many people becoming significantly worse.
Consequently graded exercise has been removed from the official chronic fatigue syndrome treatment guidelines in the UK.
While mainstream medicine manages chronic fatigue syndrome by using pharmaceutical drugs to suppress your symptoms, functional medicine aims to discover the root cause of your illness.
It uses diet, supplements and lifestyle changes to help rebalance your body and facilitate healing.
The lab teststhat functional medicine practitioners use are different from those your local doctor will order.
In my case a functional medicine practitioner was able to discover I had multiple hormone imbalances, mitochondrial dysfunction and gut infections.
After years of doctors telling me all my tests were fine, it was incredibly validating to finally have a piece of paper proving I did have things wrong with me.
People with chronic fatigue syndrome often find their nervous system becomes dysregulated.
They become stuck in fight or flight mode with their brain continually seeing threats where there aren’t any.
Having poor tolerance to stress, startling easily or feeling “tired but wired“ are all signs your nervous system is out of balance.
Brain retraining programs use neuroplasticity to help teach your brain that it is safe so it no longer switches into fight or flight mode at minor triggers.
There are many different brain training programs available, but all involve some key aspects – meditation, breathing exercises and changing your thought patterns.
If you struggle with anxiety, find yourself spiralling into negative thought loops or live in fear of your symptoms, then brain retraining could help you.
CFS Recovery Programs
There is an increasing number of CFS recovery programs being launched.
All of them have been developed by people who have recovered from CFS and are now keen to help others on their recovery journey.
Typically the programs involve a combination of the three approaches discussed above.
I have created a PDF which details the most popular CFS recovery programs. You can download it for free on my website, Living with ME.
Charlotte Bramford runs the online community Living with ME offering support and advice to people with ME/CFS and long covid. After living with ME for 16 years she has plenty of knowledge and helpful tips on how to manage the illness. Instagram @living.with.me.cfs