What is ME / CFS?

Millions of people around the world are trying to understand what is ME / CFS. It is a life-limiting condition that can affect anyone – dancers, athletes, Doctors, successful movie stars, the young and old. 

Imagine waking up tomorrow and suddenly your body isn’t working. You can’t walk, talk, or think clearly. Your whole body aches with exhaustion from just the simplest of activities. Now imagine that no one can help you, no one knows what’s wrong, and worst still – some people don’t even believe you!

The main point of this article is to help people who may be wondering what is ME / CFS, coming from my personal experience. Thank you for taking an interest, by increasing awareness we can hopefully connect the chasm, helping make a difference to the millions of people suffering in silence, too ill to tell their story

My Story:

If you had been at my house on a cold wet Monday morning on the sixth of Feb 2017, you would have seen me trying to carry on as normal. I had friends over with a small baby and child, plus my own daughter who had just turned two and we were having the usual fun of playing with the kids whilst trying to snatch adult conversation. Yes I was feeling tired, but I was determined to think positively, push through and just get on with it, as I always did. As we all do.

“See you at dance class tomorrow” were the last words I said to my friend as I waved them off and then slumped in a chair exhausted. I had just started teaching a dance class and had been a normal busy active Mum, with several projects and pursuits on the side.

I used to think that I could achieve anything if I just worked hard enough with a positive mindset and ‘can do’ attitude. I used to think that everything was mind over matter. This belief enabled me to have a successful award winning corporate career and become Co-Founder and Director of a charity that helped hundreds of causes with millions of pounds. It helped me become a best selling author and educational content creator who loves helping others, driven by wanting to make a difference.  However, it’s true what they say about not appreciating something until it is gone. I realise now that I had never prioritised myself and my own health and wellbeing and how truly important that is.

You know that cold, fat heavy rain that soaks you within seconds? Picture that pouring from the sky as I went into hospital that dark winter evening.  I distinctly remember the sensation of wanting to dash in out of the rain, I would have normally run and jumped over the puddles, but my body stood virtually frozen to the spot, hardly able to move. The rain poured over me like buckets of cold water and it took every available ounce of strength I had to just shuffle one foot in front of the other, unable to walk around the puddles or even pick my feet off the ground.

In hindsight, I wish that I had taken the Doctors advice and been admitted into hospital to have intravenous antibiotics. I had a severe kidney infection and they were concerned about sepsis. However, I had a daughter to look after and a life to get on with and I didn’t want to be in hospital taking up valuable bed space. So I promised the Doctor I would go home for complete bed rest and take the strong antibiotics and come back if it got worse.  Mind over matter and all that. I’d had kidney infections before, no big deal, I just thought I would take the antibiotics and be fine in a couple of days/weeks with plenty of rest.  I rested like I had never rested before, giving my body everything it needed to recover, but sadly it did not.  We now know that I was resistant to the antibiotics, perhaps even reacting badly to them, and my body went into some kind of emergency shock. There were a couple of times when things got to the point where my husband was holding the phone to call for an ambulance as I was way too ill to leave my bed and go to hospital. However, we just thought that my paralysed body, inability to breathe and the feeling I was dying as my body completely shut down, was just a panic attack and that I’d be fine with lots of rest. That is why I always encourage anyone to go to hospital and not just think you can fight through these things. I wish I knew then what I know now and maybe by sharing it might help someone else in the future?

Fast forward a few months, I’m having to live with relatives sitting in their Doctor’s office, with a tremor in my right arm that comes on when I try and walk. The sheer effort of just getting to the doctors surgery is completely exhausting. It goes way beyond feeling ‘tired’. To put it in context, with the birth of my beloved daughter I had a 50 hour labour resulting in emergency C-section and 6 months of hardly any sleep, I understand what it’s like to feel tired and exhausted. However, this feels completely different. CFS/ME feels like your body is physically shutting down and is unable to function, no matter how positive you are and how much you try to convince your legs to move they simply refuse. It’s like my body became disconnected from my mind and decided to just do it’s own thing and go on strike! 

What is ME / CFS and why is it known as the mystery debilitating illness?

“We don’t know what it is, we don’t know what causes it or why. It can affect anyone –  healthy young people, marathon runners, athletes…”

“OK…?” I said slowly trying to comprehend that the Doctor didn’t know what was wrong and why my body had suddenly stopped working.  “So what should I do, how can I get better?”

“We don’t know” he said honestly. “There is no agreed treatment or cure. There’s a lot of controversy, in the past they had recommended Graded Exercise Therapy…”

“EXERCISE?!” I burst out laughing. I could hardly even walk, let alone start exercising. My body was screaming out for rest, not exercise. I decided that I needed to start listening to my body more, trusting my instincts and researching options. 

Sadly the ME/CFS forums are full of incredible, talented, intelligent and previously healthy people who took the damaging advice to ‘exercise’ and ‘push through’ and ended up paralysed, even needing to be tube fed as a result.  Because of lack of medical research, funding and education in this area, people with ME/CFS are pretty much just left to get on with it, stuck in bed missing out on their life.

I was officially diagnosed by a neurologist in September 2017 and have just received my first appointment letter for a CFS clinic in July 2018 – 10 months later! A Doctor once told me that ‘of the people that fully recover, 85% do so in the first two years’, so time is important. I am lucky to be able to investigate potential solutions myself, becoming my own Doctor and Scientist. I have dedicated all available time, limited energy and resources to discovering everything I can from various approaches, working with private specialists and experts, reading scientific papers, books and on-line learning. I try to be grateful for the opportunity and hope that one day, when I’m in the best health of my life, I’ll be able to share solutions to help others.

What is ME / CFS?

Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) is even more difficult to understand than it is to pronounce!  It is a chronic multi-system neurological autoimmune disorder, where the body isn’t able to produce energy at a cellular level.

Often referred to as an ‘invisible illness’, people can look normal when they are putting on their brave face.  However, this illness is characterised by a debilitating exhaustion after any activity, called ‘post exertion malaise’ (PEM).  This means that whilst we may be able to appear to do something, we will have to pay a high price for up to three days afterwards. At least a quarter of all those with CFS/ME are bed-bound or house-bound and symptoms can highly fluctuate.

In English please…

It doesn’t quite roll off the tongue does it: ‘Chronic multi-system neurological autoimmune disorder’?  ‘Chronic’ means long term and there is no agreed cure or treatment for CFS/ME. Very little is known about the disorder, and significantly more research needs to be done in this area.

In terms of ‘multi-system’, it basically affects our whole body. As I’ve since learnt, we have 11 main systems, which underpin our healthcare system. For example: cardiologists specialise on the heart, immunologists study how the immune system functions, neurologists work on the brain, spine and nervous system etc.

It’s handy if your illness neatly fits in one of these areas, where specialists are trained to deal with your specific condition. However, ME / CFS causes dysfunction across multiple systems. It is classified as a neurological disorder and research proves an autoimmune aspect, where the immune system attacks itself/your body. I have been under the care of a neurologist, immunologist, cardiologist, urologist and an endocrinologist, all in different hospitals. We tend to get passed around, which is completely exhausting, as we have to explain it over and over again as a joined up integrated approach is not yet mainstream.

What can you do if there’s no cure or treatment available?

As we don’t yet have the medical research and understanding for CFS/ME, I have been trying anything and everything. I’m working with a nutritionist from a private specialist clinic in London, trying to use food as medicine and supplement any deficiencies.  I’m also seeing an acupuncturist who is also an experienced medical Doctor, so is a great source of knowledge. I’m trying yoga, meditation, Traditional Chinese Medicine, acupressure, tui na, Tai chi, qigong, reiki, EFT, energy healing, grounding, chakra balancing and alignment. I see a cranial osteopath, which I found helps remobilise my spine, plus I do feel the benefits from weekly acupuncture.  The good news is that I have completely overcome my fear of needles (I have had so many blood tests in the last year I’m practically a pin cushion). I’m learning a lot and am open to trying anything, I just want to get better ASAP.

What does it feel like to have ME / CFS?

Have you ever been really ill, with a nasty flu or virus, where you’re so tired you can’t get out of bed?  You don’t have the energy to do anything, no matter how much you want to. Have you ever been too exhausted to even watch TV or read as you just don’t have the concentration? Even talking can be a major effort and everything can become overwhelming with sensory overload?   

What about a killer hangover, where you’re so sick that every sound, smell, even light hurts?  You can feel like a zombie, when your body feels poisoned and can’t function. I have had some killer hangovers in my time, but at least with a hangover you know it’s temporary and you can swear never to drink again (until the next time!).  Imagine, however, if you never got better, even once you slept or got over the virus/hangover itself.

To me, having CFS/ME feels like I’m 90 years old with strong flu and a killer hangover combined.  When my energy is low, the simplest of activities can make me feel like I’ve just run a marathon uphill, whilst carrying the weight of a car!  My whole body aches, I feel sick and shake with exhaustion, any form of stimulation can hurt my senses and my body stops working properly. 

When my body runs out of energy, it starts shutting down digestive, urinary, coronary and respiratory systems, plus I get brain fog when my energy gets low.  When I crash, I can sometimes find it really difficult to breathe, as well as be unable to move, walk, talk or think! I have mental awareness of what is going on around me, but I cannot engage my body, it’s like it goes into paralysis as shuts down. It’s a very strange experience.

Can you imagine what is it like to wake up one day and find that you can’t do any of the things you want, the things you love and enjoy, the things that make you who you are.  Imagine what it’s like if every activity, even just talking or getting out of bed completely exhausts you. You cannot see friends, take your child to the park, leave the house or even talk for long without crashing. You miss the life you once had, the things you used to do. Instead you are stuck in a body that no longer works and no one seems to understand why or how to fix it.

What is ME / CFS and why does this happen?

My nutritionist explained that when we have an illness, such as the flu, it’s actually the immune system that sends us to bed and makes us feel awful, not the virus or infection itself. 

The immune system is like a little army that goes to war on the ‘invader’, shutting down all ‘non-essential’ energy, so that it can fight for survival. Once the ‘invader’ has been eradicated, our body should return to normal.  However, one theory with CFS/ME is that the immune system goes into overdrive and stays stuck in emergency response, which can lead to it not only attacking itself with ‘friendly fire’, but also shutting down various parts of the body, organs and even the brain, deeming them ‘non-essential’ to the war effort.

There is also scientific evidence that shows that people with CFS/ME have dysfunctional energy production on a cellular level or mitochondria failure. Mitochondria are like the little energy batteries in each cell. This means that the body does not have enough energy to function properly and once it uses up the limited energy available it just shuts down.  There is no stock, so the body shuts up shop!

What is M.E & how to explain it?

Have you ever had a broken phone battery, where no matter how long it’s plugged in, it only ever charges to about 30%? Whilst it can appear ‘normal’ to others and send the odd text or short call, doing so completely drains the battery disproportionately. Then it just suddenly dies and is unable to do anything.  Even with hours of charge, it never fully recovers.

Another way I describe it is to think of energy like money.  A normal person may have a debit card and be able to spend any amount they need each day, with an ability to save up and make large purchases as required. However, someone with CFS/ME is given limited resources, say 10 units a day. It varies for each person, and from day to day, some days you may have more or less. However, as an example:

  •      Getting out of bed – 1 unit
  •      Having a shower – 2 units
  •      Getting dressed – 2 units
  •      Going downstairs – 1 unit
  •      Making breakfast – 1 unit
  •      Eating – 1 unit

If you’ve only got 10 units that day, you’ve used nearly all your allowance before you even start the day. In an ideal world, we need to reserve 20% – in this case 2 units – a day to aid recovery.  However, each time you talk to someone it may take up a unit or two, each trip to the bathroom or meal you have to eat takes up units. Not to mention if you need to go to the Doctors or hospital or have a health assessment, which always completely crash me.  Once you’ve used up all 10 units, that’s it. You crash.

Crashing is when the body just stops, it has no energy. For me, I cannot move, walk or talk. My legs stop working properly, I develop a tremor and feel sick with physical exhaustion. My heart can become irregular and sometimes it’s hard just to breathe. At this point, all I can do is concentrate on trying to breathe to 10 and do a restorative meditation, which speeds up the rate at which I come back to life.

“But you look fine!”

I appreciate that this is a hard one to understand, as it’s not like most illnesses when someone gets better, that’s it – they’re better. The flu/war is over.  For people with CFS/ME, however, we are constantly surfing the waves of up and downs, trying to avoid total wipeout!

Someone with ME/CFS is constantly trying to manage their energy levels and whilst we may get pockets of energy available, for every up there is a down. When we try to do too much, it’s boom and bust. What you don’t see is the three days of bed rest required for that one moment of looking ‘fine’.

When there’s a special occasion, or when a person with CFS/ME tries to appear ‘normal’, there is the opportunity to get a short term loan of energy, but the interest is very high.  It’s a bit like the image of a loan shark coming round with a baseball bat to the knees, the costs can be extortionate. My body will typically suffer for up to 3 days following an exertion. This can leave me bed bound and unable to do anything, spending up my daily units paying the interest on the small loan. As a consequence, we have to try to stay within the boundaries of our condition, which means getting lots of rest and ‘doing less on a good day, so we can do more on a bad day’. 

Even though we may look ‘fine’ or ‘normal’ or ‘better’, it doesn’t mean that we are all fixed.  The sad truth is that you just don’t see people when their energy is low, as they are usually locked away in bed unable to participate in every day life.

Jennifer Brea’s film Unrest, is a good ‘behind closed doors’ view of the reality of life with this condition, drawing much needed attention to the lack of clinical funding for research in this area.

What can you do? Brighten someone’s day – change someone’s life.

Bringing food, helping with transport/pick ups or offering to take my daughter out to play are literally life changing ways in which friends and family have helped.  I’ve also had little cards and flowers, which have really brightened my day. I cannot chat much on the phone, but little messages or photos make such a difference to people who are forced into isolation and are not able to get out much. Staying connected means a lot.  However, please text first and avoid just turning up unexpectedly, we are walking a tight rope of energy management that can easily become depleted if we’re not careful. No one wants to feel like a charity case, but I know that we also need to accept support when it’s available. I am terrible at asking for or even accepting help and this is something I’m learning to work on the hard way. 

Despite M.E, I’m still me.

I’m sharing my experience in the hope that in some small way it may help raise awareness for the millions of people who are affected much worse. I hope it helps explain why I may not have been around much and certainly not my former social self. Please know that I’m not being standoffish or unfriendly when I don’t have the energy to engage or join in the fun. Even though I may now be one of the ‘millions missing’, I’m still the same person, despite my circumstances.  I am determined to find a way to get better and am focused on restoring vibrant health and vitality, developing new wisdom from the experience, hopefully able to share my lessons learnt to help others.

It took a lot for me to share this. I am someone who quietly just gets on with it, choosing to try and focus on positive intentions and desired outcomes. I don’t dwell or define myself by disability.  However, for all the people who have no choice but to suffer in silence, I hope it helps raise awareness and understanding for a condition that really can affect anyone at any time of life.  

Thank you.

I’m really grateful that you took the time to read this, your interest in understanding this life changing condition means more than you’ll ever know.  Small gestures make such a big difference and really mean a lot.

This is a complex disorder that very few people understand. Even as someone experiencing it myself and having spent the last year researching everything I can, it’s still difficult to understand. Therefore the more we can do to raise awareness and help increase understanding, the better.

I am incredibly grateful to everyone for their support, love and kindness. I am very lucky.  Thank you X

I’ll leave you with a little poem:

It’s not you it’s M.E

I’m sorry to my best friends who I cannot see get wed,

Instead of celebrating with you, I’m stuck here in bed.

I’m sorry to my family for the parties I must miss,

I cannot talk or eat cake and staying off the fizz.

I’m sorry to my daughter, I love more than words can say,

That I cannot take you to the park or where we used to play.

I’m sorry to my husband that whilst I try my best

I love spending time with you, but always need to rest.

The thing about M.E, as funny as it sounds,

Is that it’s not about me, it’s others I have found.

I feel a constant guilt for letting people down,

Like they might just think I’m lazy and not want to be around.

So for all the millions missing, living with M.E,

Let’s improve understanding, as I miss being me.