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ME / CFS & MCS
Immune & Nerve Dysfunction, ME / CFS & MCS
After close to a decade of illness, plagued by a vast array of bewildering and confusing symptoms, we finally managed to get an NHS diagnosis for our Myalgic Encephalitis 2 years ago in 2022. We cannot express in words how validating it can be to have a diagnosis! Even if this country doesn’t offer us any help as they do for other chronic illnesses, like Diabetes for example. Diabetes patients can get tests and medications free on the NHS! - and they should count their lucky stars! We are less lucky in this way, and have to spend a small fortune on medications every month, such as gut prokinetics which help keep our guts moving (we have gastroparesis).
BUT to be able to put a name to our very long list of symptoms, chronic fatigue being the overarching one makes us incredibly grateful. Because once you have a diagnosis and a name for your illness, you can then better understand it and research how to begin healing. It’s SO empowering!
Our Root Cause
“Many people with ME/CFS have been under serious mental or physical stress before becoming ill.”(1)
Since our early childhood, we suffered from chronic anxiety and bouts of depression. These continued and worsened as we went through university and our anxiety eventually became so bad that we were struggling to breathe on a daily basis. It was as if we were constantly treading water, moments away from downing. We even went to A&E at separate times to get our hearts checked because they were continuously beating so fast and we had a pressure and tightness in our chests. Our immune systems began playing up and we got an array of infections on a regular basis. We also began to lose hair. It was a scary time.
We discovered meditation around the age of 25/26 and have been meditating daily for 30 minutes to 1 hour plus since. But by that time, it was too late. Our bodies had endured too much and our health spiralled downwards dramatically. Our guts began to dysfunction and we started reacting to foods. Then our energy levels spiralled downwards also. This happened roughly at the same time for both of us.
It is likely that the overwhelming amount of anxiety we had experienced for so many years, caused our nervous system to shift into the fight or flight mode or the freeze mode, and in so doing, wreaking havoc on our internal systems. Even once we had taught ourselves to relax deeply through meditation, no matter how much we meditated, we still woke up every day with our hearts racing and our chests tight.
What is ME / CFS?
ME is a neuroimmunological disease that causes extreme fatigue as well as metabolic, cardiac and gastrointestinal, immunological and neurological symptoms, made worse by exertion in a process known as post-exertion malaise (PEM) or post-exertional neuroimmune exhaustion (PENE).
Diagnosis is by symptoms and the International Consensus Criteria requires:
1/ Post-exertion neuroimmune exhaustion
2/ Extreme fatigue lasting for over 6 months in adults and 3 months in children
3/ Symptoms in each of 3 categories
- Neurological / Pain
- Cardiac / Metabolic
- Gastrointestinal / Immunological
There are an estimated 17-24 million people affected worldwide and 80-90% are undiagnosed (GoBlueForMECFS, 2023).
How is it Triggered?
How is it Triggered?
As mentioned above, our ME was triggered by intensive long-term chronic anxiety. But it can also be triggered by a viral infection:
“ME/CFS has long been recognised as a ‘Post-viral Fatigue Syndrome' and neurological condition by the World Health Organisation, NHS and Department of Health” (2) and has received more attention in the post-COVID 19 pandemic years due to long COVID sufferers reporting ME / CFS symptoms.
ME / CFS & MCS Continued
The Name “Chronic Fatigue Syndrome” is Befuddling
Labelling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome” is like labelling those with dementia as having ‘Chronic Forgetfulness Syndrome”. Most chronic illnesses have chronic fatigue as one of their major symptoms, so this has led to much confusion and befuddlement. ME is a neuroimmunological disease which causes severe symptom exacerbation in response to even minor exertions such as simple daily activities.
Indeed, post-exertional neuroimmune exhaustion, malaise and symptom exacerbation are the defining factors of ME. The post-exertional symptoms reflect muscle pain (myalgia) and brain and nerve inflammation (encephalomyelitis), as the name clearly describes. The term “Chronic Fatigue” is just a symptom.
Research is still in its infancy so understanding the disease and finding help can be frustrating.
Multiple Chemical Sensitivity (MCS) & Food Intolerances
These are listed as 2x different symptoms of ME / CFS but their origin and cause is the same.
“Multiple Chemical Sensitivity (MCS) is a physical illness that causes sufferers to have allergic-type reactions to very low levels of chemicals in everyday products. Put simply the immune and detoxification systems stop working properly and the body cannot process toxins (xenobiotics) efficiently. Besides reacting to things like shampoo, cleaning products, perfumes and pesticides, many sufferers are also sensitive to food, medicines, moulds and electromagnetic fields.
Exposure to very low levels of toxins and fragrances can lead to a wide range of symptoms including respiratory problems, headaches, pain, exhaustion, nausea, confusion, or collapse. Reactions can occur immediately or several hours later depending on which body systems are involved.” (3)
Similarly, food intolerances occur because the body is reacting to things it shouldn’t; this can include any and all foods. Even the healthiest, most nourishing foods with the lowest FODMAPs, as we discovered.
If you react to the binding and filler ingredients often used by pharmaceutical companies, such as talc, potato starch, colourings and flavourings, we highly recommend using the Electronic Medicines Compendium which lists all medications of each brand and the exact ingredients.
Healing from ME / CFS
We cannot speak conclusively about how to heal as we are still going through the recovery stage ourselves. But we can let you know what continues to help us on our healing journey.
Everyone’s experience with ME / CFS is different and different methods and techniques may be more appropriate for you.
What we practise on a daily basis -
- Meditation
- Deep full-body relaxation
- Yoga (energy levels permitting)
- Screen-free time to let our senses unwind (technology and social media especially keeps us overstimulated so we make time to unwind from these distractions)
- Positive thinking & gratitude
In terms of positive thinking and gratitude, we have shifted to thanking our body for each symptom and for communicating to us, for example our fatigue is a sign that we must rest more.
We are also constantly making small and big changes here and there to make our lives as simple and stress free as possible.
What we take on a daily basis -
- Coenzyme Q-10 supplement
- Electrolytes & magnesium supplements
- Vitamin C & D (therapeutic amounts of high quality bioavailable supplements)
We recommend the Autonomic Nervous System Rewire (ANS Rewire) programme created by Dan Neuffer, author of the book CFS Unravelled. Although it can be a tad overwhelming in terms of all the information Dan presents you with, it has given us some profound insights into how we can heal.
We will continue to keep this page updated with any new developments, adding anything which we find along our road to health which could be helpful to others.
Wishing you all a speedy recovery & feelings of wellbeing,
the Wellbeing Twins x