In 2003, Jan Rothney was diagnosed with Chronic Fatigue Syndrome (CFS - then known as M.E.). She recovered partially but relapsed severely in 2006 and spent several years struggling to live with the condition. Eventually, after a personal journey of discovery and learning, she made a full recovery and now leads an active, fulfilled and happy life.
Drawing on her own experiences and her studies, Jan Rothney (a former health and social care lecturer) went on to set up and run the successful Reset to Thrive recovery course. She has helped many hundreds of people with Chronic Fatigue and, more recently, with Long Covid to break free from these debilitating conditions and to regain their physical and emotional health.
Now Jan Rothney has written a book, “Breaking Free” to help sufferers. She shares some of her insights with FemaleFirst …
According to the Office of National Statistics (March 2022) there are currently 1.7 million people suffering from Long Covid in the UK. These are people who are still experiencing Covid symptoms more than four weeks after infection. It is estimated that a quarter of these people could end up being diagnosed with Chronic Fatigue Syndrome (CFS). Whilst some people with Long Covid have respiratory problems and a very small percentage have organ failure or damage, the majority will have symptoms similar to Chronic Fatigue Syndrome.
Over 250,000 people in the UK currently have been given a diagnosis of CFS (National Institute for Clinical Excellence 2021) in the UK – and some estimates say that the figure could be as high as 600,000 people.
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What are the symptoms of Long Covid and CFS?
Symptoms can include head, muscle and abdominal pain, decreased speech, brain fog, exhaustion, malaise, sensitivity to light, touch and sound, rapid heart rate, irregular thermostat and gut problems. The body will shut down after any exertion or particular triggers. All of the symptoms are typical sickness responses that we experience with the flu or other infections, as the body changes its metabolism, microbes, brain function, sleep pattern and behaviour, to fight the threat.
With Long Covid and Chronic Fatigue Syndrome, sufferers get trapped in a sickness loop.
Research shows that when the infection has gone, the body of a sufferer is still acting as though it is still facing a danger from the infection. This is known as ‘the sickness loop ’. Threats can be physical infection or psychological trauma. This sickness loop only stops when the body detects it is safe to heal.
The body’s own adaptive system becomes ‘too protective’
According to NICE guidelines, both Long Covid and CFS are ‘maladaptive neurological conditions’. This means there is no actual neurological (nerve) damage but the body’s adaptive system is malfunctioning nonetheless.
The body’s autonomic, adaptive system is designed to automatically prepare the body for whatever situation we are faced with. When conditions are healthy, it lets the body thrive, but when conditions are unfavourable or threatening, it throws the body into survival mode.
However, with Chronic Fatigue Syndrome and Long Covid, it seems that the infection (eg: the Covid virus) or some other threat, knocks the body out of balance, affecting the immune system, gut and the autonomic system. Even when the infection has gone, the body mistakenly stays in a state of over protection, putting it into hyperarousal or shutting it down.
Devastating, frightening and unpredictable
It is devastating and frightening for the body to get stuck in the sickness loop, feeling wired and then crashing, especially when symptoms are so unpredictable. Unfortunately this makes matters worse as everyday things become scary and threatening, thus perpetuating the illness. This is not anyone’s fault – and sufferers should not be blamed in any way for developing Long Covid or CFS. It is the body’s protective system taking over and mistakenly recognising everything as a threat. Sufferers get trapped in a perpetual loop as the protective survival system stays switched-on and active, detecting the world is a harsh place, and so healing is prevented.
The malfunctioning, survival system is our ancient, animal brain. Over-arousal is caused by the mammal survival system, which is often referred to as fight or flight; it is useful to think of it as the overactive chimp brain. The system that shuts down the body is an even more ancient, reptilian system; it is like the fuse box in the house, causing a short circuit when there is energy overload. With Long Covid and CFS the lower systems are running amok and so cellular defences stay on, causing symptoms.
Recovery is possible
Recovery only happens when the body gets the “all clear” sign that it is safe to heal.
To heal, it is imperative to override these malfunctioning systems and it is completely normal to do this. For example, in normal life, when we see an oncoming lorry coming at us, the survival system automatically kicks in and we step back quickly. We then override it by engaging the higher human brain, assessing that the danger has passed and we are safe; taking a breath to calm the body and then carrying on. The same is true when we ski down a mountain, have thrill rides at the funfair or spill red wine on the carpet.
Traffic light procedure: STOP-THINK-GO
In health and social care, taking control of impulses is often referred to as the traffic lights procedure: STOP-THINK-GO. We stop the automatic survival system, take control, engage the higher brain, know we are safe, decide what is best, then proceed in a better way.
Now we understand that the body’s automatic protective system is overreacting, running amok, and preventing healing. With this understanding, people with Long Covid and CFS symptoms can learn to override the system for themselves using STOP-THINK-GO techniques and take their first steps towards recovery.
JAN’s TOP TIPS if you have Long Covid and/or Chronic Fatigue Syndrome:
1: Know you can recover, just like thousands of other people. Unless you have been diagnosed as having permanent damage to organs, know there is no physical damage and your body will rebalance.
2: Let go of setbacks. When you notice symptoms or setbacks, simply become mindful and fascinated. Become an objective observer, noticing from a distance all these sensations going on (the reptile brain kicking in) and try to remain emotionally detached from anything that isn’t useful. Everything will pass when you let it go.
3: Notice the good signs. Become brilliant at noticing any green shoots of recovery, no matter how tiny, such as making a cup of tea, walking one step further, or that your body feels settled. Make the brain register that you ARE safe and capable, even when just ticking over.
4: Consistently practise being fearless, confident, joyful and calm, even if you only took one step. Be excited and uplifted. Never push through or do things feeling concerned, looking for threats, as this will just arouse your unhelpful chimp brain.
5: Practise the traffic lights procedure, using your gestures, posture, tone of voice and expression to: STOP the instinctive response and engage the higher brain to THINK you are safe, take control and then GO …
6: Do healthy exercises such as breathing exercises, gargle, sing, chant, meditate, swim, move, laugh, shake it out. Visualise yourself doing that anytime.
7: Get plenty of restorative rest, lying at ease, knowing you are safe. Rest is the body’s natural healer, so rejoice in resting.
Jan Rothney is the author of Breaking Free: A Guide to Recovering from Chronic Fatigue and Long Covid Symptoms published by Arkbound on 9th May 2022 (paperback, £12.99) and available through the publisher, internet booksellers and bookshops.
Arkbound Publishers: www.arkbound.com The Reset to Thrive Recovery Programme with Jan Rothney: www.resettothrive.co.uk