Jonathan Groves’ Story

ME/CFS
Written By Katy McGhie
“Within weeks I had fully recovered… now more than 5 years later I remain completely symptom free.”
 

  • Chapter 1: The Illness Began

    • Caught a flu and Upper Respiratory Tract Infection in May 2021

    • Symptoms rapidly worsened instead of improving

    • Diagnosed with ME/CFS after 4 months

    • Told there was no cure or effective treatment

    • Felt devastated and hopeless

    Chapter 2: Severe Physical Symptoms

    • Constant exhaustion and post exertional malaise

    • Intense headaches and body pain

    • Severe light and sound sensitivity

    • Brain fog and memory problems

    • Joint pain and nervous system sensitivity

    • IBS and digestive issues

    • Sleep never felt refreshing

    Chapter 3: Losing Identity and Mental Health

    • Could no longer socialise, work or enjoy hobbies

    • Felt isolated and misunderstood

    • Developed depression from prolonged suffering

    • Experienced a severe identity crisis

    • No longer recognised themselves

    Chapter 4: Searching for Answers

    • Felt unsupported by doctors and conventional treatment

    • Began researching independently

    • Learned about inflammation and nervous system dysfunction

    • Started viewing symptoms differently

    • Became curious about whether healing was possible

    Chapter 5: Exploring Recovery Practices

    • Introduced fasting and nutritional changes

    • Practised meditation and breathwork

    • Added gentle movement and mindfulness

    • Used cold water therapy and lifestyle changes

    • Focused on calming and regulating the body

    Chapter 6: Recovery

    • Symptoms improved quickly after implementing changes

    • Experienced a full recovery within weeks

    • Has remained symptom free for more than 5 years

    • Does not claim a universal cure

    • Shares the story to offer hope to others living with chronic illness

 

  • I caught a flu - the kind I thought I had had many times in my life with an Upper Respiratory Tract Infection, September 2021.

    I was prescribed antibiotics and was sure it would clear up in a week or two as the several in my life had done so previously.

    I didn't get better, my symptoms increased in variety and intensity.

  • None apart from my initial trigger illness: upper respiratory tract infection and flu

    • Fasting & Autophagy - specifically Ekadashi Upavasa (Fasting on the 11th day of the lunar cycle) - which took away all of my pain from my neck down practically overnight.

    • Breathwork

    • Cold Water Therapy - Cold showers, stimulated my vegus nerve and stimulated both my immune system and nervous system.

    • Nutrition - I completely removed all processed foods, caffeine, sugar and alcohol. I only ate whole, organic foods, everything from scratch. I only drank still mineral water and fresh fruit juices - I had fresh fruit juice several times a day.

    • Mindfulness Practises: Meditation, The Silva Method, Affirmations (all of the time!).

    • Gentle movements everyday - simple stretches (when I was able to stand up again)

    • Removal of synthetic clothing replaced with organic cotton, organic linen or organic wool.

    • Lots of love and support from my family, partner and friends.

  • 19 months in total

 

The Illness Begins

I contracted a flu and Upper Respiratory Tract Infection in May 2021 - the kind of flu I thought I'd had several times in my life. But this flu did not get better, it got worse and worse until I was a cocktail of symptoms and full of pain. Within weeks I had deteriorated into my worst state with my symptoms. After 4 months of symptoms, I was officially diagnosed with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). I was told that there is no known cause, no known cure, no effective treatments, to go home to rest, to manage my expectations and accept this as my new life, to sign onto disability benefits and to begin taking opioid based pharmaceuticals to try to numb the pain. I was devastated.

 
 
“It wasn’t just tiredness – it was bone-deep exhaustion, like I imagine one might feel after swimming across an ocean.”
 

Living With Severe ME/CFS

My description of what it feels like to have M.E is: imagine the worst hangover you’ve ever had, the headache, the dehydration, the hypersensitivity, now imagine also experiencing the worst flu you’ve ever had and combine the two; add in an intense constant ache-type pain everywhere in your body, especially in your wrists and joints, then on top of that, imagine you hadn’t slept in a week, that’s roughly how I felt. Every. Single. Day.

Now I’ve had my fair share of headaches before, from hangovers, dehydration to tiredness and from having had a stressful and intense day. But this constant, intense headache I endured felt very different. It felt like my entire head was under crushing pressure. After three months I had an MRI scan on my brain, let me tell you that a slight inflammation on the brain is extremely painful.

Every move felt like shockwaves through my body, even lifting my head feel like an impossible task most days. I was incredibly sensitive to light and sound, I wouldn't open the curtains because the light was too intense and was further detrimental to my headaches.

I was hypersensitive to sound and always had the TV or music on low volume to reduce discomfort. I spent a lot of each day in silence. My cognitive impairment became intense, quickly. My memory turned to mush. I mean, Dory has a longer-term memory than I had.

Concentration was impossible, and I’d frequently lose track of my thoughts halfway through a sentence when having a conversation, or forget what my partner was talking about, just as she’d finished speaking.

One of the worst parts was watching football, something I have loved for my entire life and watched multiple times a week for 30-odd years. During the matches I watched on TV, I would repeatedly find that I couldn’t remember who was playing or what the score was, without checking over and over again in the top left-hand corner of the screen. This was a scary realisation of how sick I was.

I had pain everywhere in my body, an intense ache-type pain constantly in my muscles, in my arms and in my legs, but most noticeably in my joints. My wrists, ankles, knees, shoulders and neck were incredibly painful, all of the time.

I frequently experienced Post Exertional Malaise, or as I called it, "energy crashes", whereby basic movements like going from the bed to the bathroom, or down the stairs to the sofa left me feeling as though I’d run a marathon. If I walked more than a few steps or attempted simple tasks, my energy would crash completely, sometimes within seconds, sometimes I wouldn't experience this until the next day.

It wasn’t just tiredness – it was bone-deep exhaustion, like I imagine one might feel after swimming across an ocean. I’d be left completely immobile, unable to move or even think for hours.

My nervous system and my co-ordination was all over the place. The lightest touch, a slight breeze, or even a small change in temperature all felt overwhelmingly discomfortable.

Every sensory input was heightened, even having a cuddle was uncomforting, forcing me to retreat from nearly all physical contact, even with my partner.

I also had gastrointestinal Issues, specifically Irritable bowel syndrome (IBS), whereby different foods wreaked havoc on my stomach and made digestion uncomfortable. Eating became an unenjoyable exercise that caused anxiety beforehand, because I knew what was coming after a meal.

 
“I became not only depressed, but I also had a severe identity crisis. I did not recognise myself and I was devastated.”
 
 

Losing Myself

My career path meant that I’d always been a very social, positive, energetic person. But as the pain persisted and my world shrank through being told there was no cure, my mental health deteriorated. I was unable to see friends, to work or even do the simple things I enjoy, for over a year, by which time, I was unrecognisable to myself.

Depression is not an official symptom of ME, it is a symptom of the symptoms of ME and my depression began as weeks turned into months of symptoms which took over my entire life with no end in sight. I negatively spiralled out of control. I became not only depressed, but I also had a severe identity crisis. I did not recognise myself and I was devastated.

And finally Fatigue and Unrefreshing Sleep, a concept I had never really understood until I experienced it. After a full night’s sleep, to wake up and to start a new day feeling fully exhausted, all of the time, with the aforementioned additional symptoms was one of the most emotional and upsetting symptoms relating to my illness. I felt like I woke up defeated after every sleep, either during the night or during the day.

I can appreciate that living this way can change more than the body. It can change identity, relationships, confidence, and hope. For me, the isolation became one of the hardest parts of it all. I was thankfully not alone, but nobody could understand what I was going through. Doctors couldn't even acknowledge my symptoms through tests, friends and colleagues struggled to believe my illness continued for so long. Nobody seemed able to help me to get better - so I turned to researching, reading and learning.

 
 
“Nobody seemed able to help me to get better - so I turned to researching, reading and learning.”
 

Searching For Answers

The knowledge that I gained would ultimately change nearly all aspects of my life, forevermore. I learned that many of my symptoms, were a result of dysfunction in biological systems involving:

chronic inflammation, nervous system dysfunction, immune system dysfunction, energy production dysfunction, circulation and oxygenation dysfunction, and prolonged stress responses in my body.

I learned that my symptoms were not my body attacking or punishing me. They were simply biological systems, signalling to me, that there were many problems. Instead of passively enduring my disease that nobody could help me with and waiting for a miracle pill, I began to explore if I could actively respond to my symptoms. If I could reduce my inflammation and stimulate inflammatory system regulation, if I could calm my nervous system and stimulate it's regulation, my immune system, my energy production system and also if I could improve my blood circulation, especially to my brain.

 
 
“I learned that there are scientific mechanisms, that can support healing environments in the body.”
 

Exploring Healing

I learned that there are scientific mechanisms, that can support healing environments in the body. That there are behavioural environments and practises, that modern science suggests can support the regulation of these biological systems. That they are all free. That they are all natural. That they have actually been around for thousands of years specifically for healing.

These practices include:

  • fasting and the process of autophagy

  • nutritional information

  • meditation

  • breathwork

  • gentle movement

  • cold water therapy

  • mindfulness and perspective

  • and some simple lifestyle changes

I actively implemented these healing methods into my life and my body responded very quickly.

Recovery

Within weeks I had fully recovered. I do not claim to have discovered a universal miracle cure, and I fully appreciate that every experience with M.E. is unique and that everybody responds differently to different therapies. But these practises are what collectively stimulated my full recovery from ME/CFS, now more than 5 years later I remain completely symptom free and I am sharing my story in the hopes I can help others.

Sending lots of love and positive energy to you 💚

Katy McGhie
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Clare Berrington’s Story (Carer Story)