Life Restored: My Recovery from Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome
by Fiona Symington
In December 2018, my life changed forever.
You could say I was the recipient of a miracle.
In December 2018, having lived with chronic pain for 25 years and having had the debilitating illness Myalgic Encephalomyeltis, or Chronic Fatigue Syndrome, for 14 years, I did what many say is impossible:
I recovered completely.
I changed from spending most of my life lying on the sofa or in bed in an effort to manage an all-penetrating and disabling exhaustion, to someone who can hike, ride a bike, swim, work full time and socialise freely.
These days, alongside working full time for the NHS, I share my story in the keen hope of helping other people to improve or recover. Because what happened to me wasn’t a miracle at all; my recovery was rooted in some incredible science which is helping many others get their lives back too.
My name is Fiona and this is my story.
My health issues started when I was just 11 years old.
I was a healthy child. I loved dancing and horses, reading and riding my bike. I wanted to be a dancer or an archaeologist. I wanted to be a mum.
When I was 10 years old, I fell off a horse in a riding lesson and this was the beginning of a journey with chronic pain.
The pain started in my knee.
Over a period of weeks and then months, it soon affected my lower back, my left hip and then, eventually, multiple other joints in my body.
The pain soon became severe. Initial tests showed no lingering physical damage from the accident and despite input from different doctors and multiple attempts at different medications, treatments and long hospital stays, the pain wouldn’t budge. I struggled to attend school and lost most of my friends.
By the age of 20, I had acquired a confused list of diagnoses given to me by multiple confused and often hostile doctors, who weren’t sure whether to believe me or not. These included Reflex Sympathetic Dystrophy (CRPS), Chronic Pain Syndrome, Costochondritis, and finally, the one that made the most sense to me: Ehlers–Danlos Syndrome, a condition involving hypermobility, weakness and the first label that explained my unusually velvet-like skin, stretched scars and limbs that were frequently covered in bruises.
None of these labels came with a cure and, to my dismay, it seemed as if pain would always be a part of my life.
Despite a patchy secondary education and despite struggling with the medical trauma which is often a bedfellow of chronic pain, I left home to attempt university.
Almost as soon as the first semester started, I caught a bad virus. My throat ached and my glands swelled to golf balls and refused to settle. I tried my best to focus on my course, but my cough, hot head and glass throat lingered for weeks.
Finally, I threw the virus off. Almost immediately, I caught another one.
Again I got well but again, it wasn’t long before I came down with something else.
The year marched on. I did my best to attend lectures, using a wheelchair some weeks when my pain was particulary bad. Determined to build a future for myself, I went to work abroad in the summer holiday, hoping a positive focus and some sunshine would do me good.
Back at home, I started the second year of study feeling more tired than I wanted to be and soon enough, yet again, I caught yet another virus. This time, although I threw it off, a lead-weight like exhaustion lodged itself in my bones.
I fought as hard as I could but one day, I fell asleep in a morning lecture despite having had a full night’s sleep the night before. Something was wrong. This wasn’t normal at my age. Suddenly, it felt the exhaustion was something I couldn’t fight off.
What was the matter with me now?
I went to my GP.
Tests for Epstein Barr virus came back negative. All my other blood tests were clear.
‘There is nothing wrong with you,’ the GP said, bluntly.
Surely that couldn’t be right?
I went back to my classes, but I couldn’t get through a full day. Despite the doctors words, something had to be very wrong.
I staggered on, falling behind with essay deadlines as the days went by. My physical pain intensified as the fatigue worsened, and one day after a particularly stressful week, I woke up with particularly excruciating pain in my back.
Standing, I tried to walk across the room, the pain feeling like daggers piercing my spine.
I went to see one of my pain specialists. I could hardly walk down the corridor to his office. I remember walking clutching the wall.
‘The thing to do is go away and take lots of exercise,’ he said, barely looking at me.
Hadn’t he seen me struggle to even walk down the corridor to his office? How was I supposed to do that?
Reluctantly, he agreed to give me some injections into my back to at least control the pain. When this didn’t work, he did a procedure called facet joint denervation. I lay awake on the operating table in the hospital as he worked and as I answered questions by the staff around me while he worked, hthe medical staff all laughed at me.
‘I can’t cope with the pain,’ I said to one of the nurses.
‘All it is is mind over matter,’ she said and walked away.
Traumatised by the procedure, I left university and returned home to my parents, afterwards.
I’ve pushed myself far too hard for too long, I told myself. My body needed proper rest and then I’d feel better again.
But the rest didn’t help and after the Christmas vacation, I decided to pause my studies. A year off would help. I booked myself holiday, telling myself that sunshine and blue seas was the best treatment. I would be alright. I was just stepping back for a while.
This was just a blip. I was burnt out because of the pain. That was all. I was fine.
On holiday, a healthy lunch was served each day but having eaten a few mouthfuls of it, I’d find myself having to lie across the table where I’d fall asleep whether I wanted to or not. Fighting it got me nowhere.
As the days went by, I struggled to get through the days of meditation, gentle yoga and the pottering on a boat that the trip involved. I seemed to have no control over what I was feeling. On the way home, I lay on the floor at the airport between flights, my whole body shaking violently with exhaustion.
What was going on?
Back at home, I went back to bed, but, determined not to give in to the exhaustion, I got myself a reclining exercise bike. All I had to do was push through my symptoms in a way that didn’t set them off too intensely and slowly but surely, I would feel better again. I was sorely out of shape and run down, still.
With nothing else in my diary, I tried to build small amounts of exercise into my week. Despite pushing hard, I couldn’t get beyond 7 or 8 minutes of slow pedalling. My limbs felt like lead and all I could think of was getting my head on a pillow.
I persisted but soon, I couldn’t cycle for even a couple of minutes.
I changed to swimming, thinking my weight being supported in the water would help me. Wasn’t gentle swimming restful? Hadn’t I always loved the water?
In the pool, I found that not only was I having difficulty pulling my body out of the water after I’d swum a few lengths, but at home, either one or two days later, exhaustion would overwhelm me with such bite, I would end up in tears. I stopped swimming. I stopped taking any exercise at all, feeling at time I hardly had the energy to talk or open my eyes, let alone stand and prepare meals or walk up the stairs to the bathroom.
Soon, I noticed the glands in my neck were swelling a day or two after I overdid it. I started to wake on a regular basis feeling I was coming down with a virus. My throat would feel hot and sore, I would cough and my head was fuzzy, but the symptoms would completely vanish by the evening, only to return again perhaps a day or two later.
Why was my body doing this to me after everything else I had been through? How could it betray me like this? All I wanted was to be well.
I went to visit a different GP. She rolled her eyes as she spoke to me. ‘What you need is an older male doctor telling you there is absolutely nothing wrong with you so you can put all this behind you and stop worrying,’ she said, sneering as she said it.
To my relief, she at least referred me to a rheumatologist.
‘You have Fibromyalgia,’ the rheumatologist said after taking greater care to question and examine me. ‘You’re a classic case.’
I nodded in agreement, exhausted and went home.
There, with time to think, I realised it didn’t quite fit. I might live with pain thanks to my EDS, but I didn’t have the widespread, dull aching pain other people with Fibromyalgia all seemed to have. Why did my energy plummet a day or two after doing anything if it was Fibromyalgia? Why did exercise make me feel worse instead of better? And why did I have my strange fleeting viral symptoms? Surely Fibromylgia didn’t cause any of that.
Confused, I went back to yet another GP and this time came away with a label that made sense.
‘It’s Chronic Fatigue Syndrome,’ she told me. ‘CFS.’
CFS. What did I know about that? Only snippets from friends I’d met during my long hospital stays as a teenager. The basic facts I knew boiled down to the fact there was hardly any research and no cure. Doctors were even more scathing about the symptoms than they were about pain; their advice boiling down to ‘pull yourself together.’
The label came with overtones of attention seeking and being a weak, hysterical woman.
‘There’s not much we can offer you. I’m sorry about that,’ the GP said, looking embarrassed. ‘You could try a fatigue management programme at the hospital, if you like. I can get you on the waiting list? It involves physio and CBT.’
I shook my head. I remembered hearing bits about people doing such programmes and being bullied into pushing through and getting worse. Hadn’t I tried to push through with exercise already? All that had done was worsen my exhaustion. And wasn’t I skilled at resting thanks to my pain? I was quite capable, too, of pushing myself to have a positive attitude towards chronic symptoms. What more could such a programme teach me?
At home, I switched on the computer, desperate to find answers beyond what the GP was offering. I couldn’t get stuck like this. I already had my pain to deal with and that was almost unbearable some days. I felt so ill.
A few clicks later, I came across an online support group.
I sat in bed and read all the posts I could from people who immediately seemed to know more about what I was going through than the doctors I’d recently seen.
‘The first thing to say is you don’t have CFS,’ someone told me, after I posted asking for support. ‘That’s what GP’s call it but it’s important you realise you have ‘M.E.’ or Myalgic Encephalomyeltis. CFS is a dustbin diagnosis. It means nothing. They give it to anyone when they don’t know what’s wrong with them. You clearly have M.E because you crash 2 days after exercise. It’s the main symptom.’
This was something other people experienced?
‘Whatever you do, you mustn’t exercise or push yourself too much,’ the posters said. ‘You risk becoming severely ill. That’s what’s happened to lots of us because we believed the doctors and tried our hardest to exercise ourselves better. We weren’t listened to when we explained it was making us worse. There’s actually lots of research that shows there is a clear biological problem with our bodies, it’s just doctors in this country haven’t kept up to date with it. Psychiatrists all think M.E is functional — they think it’s all in our heads. The words they use are ‘false illness beliefs’ and GP’s believe them. They will try to push you to do Graded Exercise Therapy if you go to them for help. They think therapy will cure us of our delusions that we’re ill. But research has found so many different kinds of abnormalities in our immune systems and in our mitochondria. The studies are just too small at the moment to be believed by everyone. We need more funding. But we’re so close to understanding the condition.’
At last. People who understood what was happening inside my body. There were answers on the horizon. There might come a day when I might be able to take a pill and my symptoms would melt away. However bad I felt now, I might be well enough again to travel or to work and most importantly of all, to have children.
Stuck at home and with little to do, I bookmarked the online forum and started to build friendships there, desperate for connection. There were so many nice people there; people from all walks of life and with varying degrees of illness severity who were quick to step in with all the support they could offer when I had questions.
‘Consider wearing a heart rate monitor to check you aren’t overdoing it,’ they said. ‘Elevate your legs when you can and stay inside your energy window every day to reduce crashes in energy. Sleep if you need to and think about wearing headphones to block out noise if it saps your energy.’
I went to the websites of the main M.E charities, hungry to know more about how to help myself. The medical advisors there confirmed everything the patients were telling me.
Psychiatrists were wrong that these symptoms were psychosomatic or plain made up. This illness was biomedical in nature and patients should take great care not to exert themselves in case they got worse. These charities were fundraising for research into cures.
There were good doctors on our side.
‘Are you sure the illness isn’t psychosomatic?’ I asked my new M.E friends every once in a while, still wanting to be reassured.
‘Is there definitely evidence that M.E is a real, physical condition?’
How could it not be? My symptoms were so stubborn and so awful. Some days I would lie in bed for hours, feeling I had swallowed poison.
‘Yes. There is no doubt,’ they said. ‘Anyone who tells you otherwise hasn’t kept up to date with the research. It’s embarrassing for them. The psychiatrists who think this illness isn’t real are all making money on the side from promoting their ideas, anyway. They don’t know anything. They don’t actually care about patients.’
How could doctors be so ignorant? I wondered. How could they be so cruel?
The months passed and I stuck to the advice I’d given, scared of doing anything that made me worse.
My energy battery always hovered close to running out and so I lay in bed or on the sofa most of the time, always hoping the rest would recharge me so I could get out for short periods. Never the most patient person, I pushed myself to get out of the house once or twice each week to maintain some connection with the outside world, each time being battered by a storm of symptoms in the days that followed. I tried to count my blessings that I could push myself like this at all; most of my M.E friends were more unwell and far more restricted than I was. How did they survive, I wondered?
They were so incredibly brave.
I rested and rested but despite my trips out, my health never improved. I embarked on a part-time degree but still, the days were mind-numbing and at times, my skin crawled with frustration and boredom. I watched as healthy friends posted on Facebook about getting jobs, travelling, getting married and having children.
There was so much I could have done with my life, too.
The months turned into years. My body felt alien to me. I never knew what to expect from it. Nausea would hit at random, making me throw up with seemingly no trigger. Headaches would set in. Some weeks I felt unbearable exhaustion if I talked for a few minutes too long or was exposed to too much background noise. I was often deathly pale.
New issues appeared. My heart rate started shooting up when I stood up and my blood pressure was consistently low. The heart rate issues saw me visting a respected Bristol cardiologist an M.E friend told me was exceptional; I came away with an extra diagnosis of Postural Orthostatic Tachychardia Syndrome (POTS). A label of Interstitial Cystitis was added, too, when my bladder started burning after an infection. The pain was intolerable for over a year before it eased and then disappeared. Foods gave me stomach cramps and I had a strange few months of vertigo. Finally, I started to have allergic reactions to medications here and there even when I’d previously tolerated them for years.
My original joint pain waxed and waned, but improved the more I lay in bed.
Every day was a marathon and time and time again, I felt I couldn’t cope any longer. How could anyone live like this?
As soon as a treatment became available, I would find a way to pay for it. I told myself. I didn’t care how much it cost. I didn’t care where I would have to travel to access medication. I would do anything to recover. How could anyone look at the long list of symptoms I suffered with and think anything other than I was seriously unwell?
When I had been ill for around a decade, things began to change.
There were whispers about a medication people had been given for cancer and unexpectedly also seen their M.E. recover. Formal trials of Rituximab for M.E got under way and for the first time in years there was real hope in the community.
Was this it? Was I about to get my cure?
People paid privately to get it and came online to report mixed results. I had to try it if there was any hope this was my answer. I would wait until there was more research to be safe and then buy it.
When a research paper came out saying it wasn’t our miracle cure, after all, despair took hold of me. How could our hopes have been raised like that? How could I carry on?
As further small studies came out with news of having found physical abnormalities in M.E patients or potential treatments that could be tried, my hope was ignited before dwindling over and over as nothing seemed to come of these findings.
I was getting tired of being tired.
My parents were getting older. What was going to happen when they were elderly and needed help themselves? How would I manage when they were gone? I had relationships here and there, but my exhaustion made dating near impossible. I struggled with basic household tasks. What if my health declined as I aged?
I had had enough.
I went back to Google for solutions. There were a few. Some people had had success taking a drug called Low Dose Naltrexone. Many others had not, however. Should I try it, anyway? Could I bear to get my hopes up?
I tried the Lightning Process, a programme developed specifically for people with M.E.
‘Don’t do it,’ other patients said. ‘It doesn’t work.’
I heard it was curing some, however, so I went along and tried my best to go in with an open mind. Despite trying hard at the exercises, I saw no changes. What was I doing wrong with it? I was only more frustrated when a seriously ill person attending at the same time came away as I did recovered. Watching her go off on bike rides left me with more questions than ever. How had it worked for her and not me?
I asked questions of people I met out and about. A woman in a meditation class swore to me she’d got her health back by removing all traces of mould from her house. ‘Mould is the reason people, get ill, I am sure of it,’ she said. But my house had no mould.
There had to be other answers out there.
Fed up, I started thinking more about everything I knew about this illness.
What were the facts of my illness?
I couldn’t force my way through my exhaustion. It was horribly real. But some people declined over time and became severely affected, while my energy levels had mostly remained at the same level for years. Symptoms also varied hugely between sufferers. It was also possible for me to have better days or even weeks before things declined again.
Why could my body function in a better state in the short term like that? If I had physical damage at a cellular level, how did that work?
The more I thought about it, the more confused I became.
I reflected the most on this fact that my symptoms could change drastically in a single day. I might be unable to open my eyes for hours in the afternoon, say, but then the evenings saw me able to shower and cook myself a basic meal or even, if I really pushed myself, visit a bar for an hour or two with friends who had no idea my symptoms were creeping back in as the clock ticked and the noise in the room built.
At around the same time, a severely ill friend spontaneously improved enough to start leaving the house and take short holidays after she joined a dating site and fell in love. I had known her as someone who had been battling severe symptoms for years. She had been forced to use a commode and had had to put up with being dressed and cooked for by carers despite hating needing them. Despite her story, I had seen no real improvement when I had fallen in love with someone in a past relationship.
I had other friends whose symptoms fluctuated with weather changes or when they spent time in another country with a different climate. And another severe sufferer who had gained fame in the community for blogging about his condition and for having a parent conducting biomedical research into M.E reported being so unwell he was unable to eat, to move his body in his own bed or speak and yet he was able to stand and walk to his ensuite bathroom each day when he needed to.
M.E. made no sense.
In a moment of frustration, I argued with a stranger online. She posted a recovery story showing photographic proof she had gone from being bedbound to completely recovered over the course of one weekend. How had this happened? She had talked to a spiritual guru who advised her to just decide not to be ill anymore.
Didn’t she know she was discrediting the testimonies of people in the M.E community who lived with a real physical illness, I told her? She was fuelling the beliefs of psychiatrists who thought the illness was all in our heads and could merely be thought away.
‘You might have had ‘CFS,’ whatever that is,’ I told her, ‘but you couldn’t have had M.E. You don’t know what it means to have this condition that has totally ruined my life.’
Still, I walked away from the argument having seen from her photographs that this woman had been seriously unwell and her condition had changed.
Nothing quite added up anymore.
And then, in November 2018 I was browsing on Instagram, and an advert popped up.
It was for a website aimed at chronic pain. There was text about how the latest pain science can completely get rid of pain for many. The website was called Curable.
I clicked on the link, curious about what it was selling. It had to be a bogus website.
I found my way to glowing testimonials from people who had used the website.
‘Try this,’ they said, ‘you won’t regret it. My pain, my fatigue, my nausea, my sensitivity to noise have also vanished.’
Impossible, I thought. How?
I read on, unable to tear myself away. The website mentioned that it was rooted in the theories of John Sarno and the biopsychosocial model.
Ah. Okay.
The BPS model sold people the idea that they were catastrophising or exaggerating simple symptoms, I knew. Psychiatrists liked it because it was a way of politely saying that people were attention-seeking or benefitting from being ill. They were ill because they were hysterical. The idea was gaslighting.
Good try, sucking me in, I thought. I rolled my eyes and went back to Instagram. That website was a sham. It was nothing that my local NHS pain management clinics weren’t offering, and hadn’t I been through several of those?
A week or so later, the advert came up again. A testimonial once more, urging me to open my mind to this programme.
Annoyed, nonetheless I clicked on the link and re-read the text. For a moment, I felt hope. Again, I saw multiple testimonials reporting the website had changed their life. It included people who had experienced chronic fatigue. How could that be possible? Were these accounts made up?
The fleeting hope I felt stung. How could I be so stupid to get sucked in to clicking on this website link again? A psychological approach can’t get rid of a physical illness, I reminded myself. This programme would just educate me about how I should ignore my symptoms and stop making a fuss. Maybe it would talk me through some breathing exercises and get me to think of passing clouds and a field of flowers. Been there, done it.
Go away.
A particularly bad week of symptoms hit. I lay in bed feeling desperate. Why did I have to have this stupid illness? It was unbearable. In a temper, I found myself back on the Curable website. I do not have a made-up illness, I thought. How insulting to try to convince me I did. If my illness was due to my mental health or my thoughts, I could make myself well instantly.
I read glowing testimonial after glowing testimonial. Angry now, I wanted this website to go away once and for all. Why did people say they’d been helped? I wanted to prove it was a stupid programme by going through the whole thing to show it didn’t work.
It won’t work and I will be able to show myself and everyone that I am not weak or making my illness up. I will be able to say that I have tried everything.
I signed up.
For 4 weeks, my life revolved around Curable. Waking up, I got straight to work listening to the lessons on pain science.
Pain is a warning symptom, it said. Pain tells us we are injured so we can take action to take ourselves to safety or attend to physical damage. It is the brain that decides whether or not to create pain but sometimes we now have scientific evidence that the brain makes a mistake. In fact, when someone has experienced trauma in early life or has a sensitive disposition the brain is particularly good at making an error of judgement and being overly sensitive about creating real pain to warn us we aren’t ok. Neural pathways can then form so the pain signals continue when they aren’t necessary.
The brain is now wired to produce pain.
The good news is, we can teach our brains that there is actually nothing wrong with our bodies. We can learn to create a deep sense of safety for ourselves in our body via the repetition of certain exercises. Symptoms can reduce over time and often be completely eliminated.
This science applies to more symptoms that pain.
I listened to the lessons in complete shock. Everything from fatigue and nausea to digestive issues, dizziness, temporary blindness, noise sensitivity, heart rate and blood pressure issues can all be a warning signal the brain uses to alert us to the fact we aren’t ok.
The symptoms are real but we can make them go away.
This was it. This was my problem. I knew it. My symptoms were real but the variation in them suddenly made sense. Here was proof that there was no physical abnormality causing them at all. If a leg is badly broken, a person cannot walk on it freely at one point in the day and not another, after all. The bone is broken.
If a symptom comes and goes, it is a sign there is no physical abnormality at all but that it has been generated by the brain. Otherwise, how would you have periods of having energy, or being able to walk or talk or tolerate noise when at other times it was impossible?
This was it. This was going to work for me.
From here, I threw everything at the exercises Curable suggested, working in tiny bitesize chunks and still stopping for hours to rest. I wanted to learn everything I could.
Why had nobody told me these things before, I wondered? Why had nobody said ‘I believe you are genuinely ill but the good news is I can help?’
Two weeks in and after lots of repetition, my symptoms seemed a little better. My M.E symptoms and my physical pain, too.
Were they really going? I didn’t dare tell anyone; in case I was wrong.
One day, the doorbell rang. I answered the door to see the face of a family friend who had known me for a long time but who knew nothing about the work I was doing.
Before speaking, he stood scrutinising me for a moment.
‘You’re getting better,’ he said.
I was stunned.
‘What makes you say that?’ I asked.
‘Your colour is,… different. Your whole face is. Your eyes have life in them. I’ve never seen you looking like this.’
I couldn’t stop myself from grinning.
‘I’m trying something,’ I half-whispered even though no one was around to hear me. ‘It’s too soon to tell, but I think it could be working.’
He left andI went and looked in the mirror. Perhaps I could see it for myself. My skin did look different. I didn’t dare believe it. What if this wasn’t real?
I went straight back to Curable and worked harder still. This had to work. I was sick of waiting for promises of research or treatments that never materialised. If this worked, I would no longer be dependent on research being funded, on trials crawling along for years or on the NHS agreeing to approve a medication as treatment.
My health would be in my own hands.
A week later and there was no doubt about it. I had some energy again. I could push through a whole day without falling asleep. Now, I was certain I was getting better. My symptoms waited for me with vicious determintation as I woke in the mornings but then disappeared within ten or fifteen minutes as I worked through the Curable exercises. They came back later in the day but when I tried to get rid of them again and once more they disappeared. I could almost turn them on and off as if I was flicking a switch.
My improvement was real.
By week six I was doing so well, it was time to test my recovery
Having taken pains to not overdo it or make my heart beat fast for years, I challenged myself to start walking. This would be the real test.
On my first walk down a short track behind the house, I felt exhaustion looming. Standing still for a moment, I closed my eyes and calmed myself down. I remembered everything I’d learned. To my relief, my energy came back. I walked slowly back uphill, having to stop every now and again to catch my breath due to lack of fitness rather than tiredness.
I waited for 2 days; I didn’t crash. I also felt no pain.
I walked further the next time, this time going all the way down the track and a little way across the field at the end, where I had to tackle a small incline. Once more, I made it home without issue and again, over the coming days, I didn’t crash.
Day after day, I pushed myself a little further before finally getting in the car for a walk in a local forest.
This time I faced a big hill.
I stood at the top of it and thought, if I can get all the way down and back up again and not crash, that is it, I’m fully recovered. Curable has worked.
I walked down the hill, stopping to take photographs and to squash down any hope that tried to rise to the surface.
This couldn’t be real. It couldn’t be. If it was, how was I supposed to process the joy of this? How would I ever rebuild my life? And how would I come to terms with everything that had happened to my body, when the solution was proving so simple?
I stopped five minutes down the hill, not wanting to take too big a risk when I was out alone. I turned and faced what looked like the steepest slope going back uphill. I took a deep breath and walked back up it, feeling completely fine.
This was real.
I was well again.
I sat down on a nearby bench and started crying. I was well. Curable had worked. I was going to get my life back. My head was full of ideas. If I could get fit enough, I would be able to hike. I might be able to work. I could rollerskate or dance or ice skate, if I wanted to. I could do anything.
I couldn’t believe it.
I was well again.
It is now 2024 and I have been fit and well for over 5 years. My recovery has persisted and having shared my story with others, I have been in the incredible position of watching many others with M.E. recover, too. Sharing the science that got me better and getting to witness it working for so many people has been the greatest joy of my life.
I have spent the past 5 years reading as much as I can about health psychology, neuroscience, and biology and to my delight, have found that Curable has a strong theoretical underpinning. While the Lightning Process wasn’t my answer, I now understand why it helps a proportion of people, too. When I share the story of my recovery with medical professionals, they nod and start beaming, saying ‘yes this is what we what we are trying to teach patients. The biopsychosocial model is nothing to be feared. It is amazing. The brain is amazing.’
At this point, the techniques that helped me are typically advertised as helping pain but that needs to change. I am hopeful that there will be many studies ahead fully testing these ideas the devastating symptoms that doctors or patients have labelled M.E, Long Covid, Chronic Lyme, MCAS POTS, Fibromyalgia and Adrenal Fatigue. As a recovered patient, my personal conviction is these are all conditions involving the brain attempting to alert people to danger.
With that said, while I was able to achieve a complete recovery, balance is necessary.
The exercises I used won’t necessarily work for everyone. Research can help us understand why. Nonetheless, I believe that, even when they merely give people greater symptom control or a deeper level of understanding of their own past and emotions, they can give meaningful results to people who are suffering very real and very debilitating symptoms.
The M.E community, in particular, is full of people who are often left to muddle through symptoms and their associated losses alone. They are often abused by family members or the very medical professionals who are supposed to be helping them. Many people with M.E. suffer terribly.
I speak out about my recovery for those people. For my friends.
Because I never thought I would recover. I never thought I would get my life back.
But here I am. And my recovery has been everything.
Do you want to connect with me or learn more about how I recovered from 25 years of chronic symptoms? Follow me on Twitter @Fionas_Story
Note: I am not professionally affiliated with Curable, nor do I earn money for mentioning it as having played a part of my recovery.
Advice in this article is provided from the point of view of having lived experience of a variety of chronic health conditions and recovery. Readers should always consult their physician when making decisions about their healthcare.
