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An invisible side of M.E.

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I rarely talk about it. It’s the first time I write about it. It’s not secret though, if asked directly, I’ll say it: I have M.E. also known as Chronic Fatigue Syndrome or CFS/ME.

Most people don’t know what this means, including many GPs and other health practitioners and some even think it’s not a real condition.

It’s partly why I don’t talk about it. I have nothing to gain from mentioning it. I don’t want people starting to see me as ‘someone with M.E.’ or giving me unwelcome advice. I’ve recovered a lot now, and only look ‘unfit’ so it’s easy to pass as ‘ok’.

Chronic Fatigue Syndrome is a bad name because it sounds like, ‘you’re tired all the time’ but this is not what this condition is about.

For me, it started in 2010, I got diagnosed in 2012 and got better in 2015. I still live with it but I don’t think about it that much anymore.

I would not have written about this, but each time I hear about long COVID it makes me think of M.E., so this might give some hope to people with either M.E. or long COVID: it’s a long road, but some do get better.

row of wooden spoons, held on a wood rail attached to a white uneven wall
Photo by Teodor Drobota on Unsplash — Spoon = unit of energy for chronic fatigue (More on this further on)

In this post:

OK, so what is it?

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. — definition by the NHS

Most people with this condition prefer to say M.E. which stands for: Myalgic Encephalomyelitis. This sounds a bit mysterious and is hard to say but much closer to what it is.

Myalgic: Pain or tenderness in one or more muscles

Encephalomyelitis: an inflammation of the brain and spinal cord (but a lot of people with M.E. do not have that inflammation ….so not an ideal name either)

Like many disabilities, no two people experience it the same way and it varies a lot from one day to the next and even within the day.

The list of potential symptoms is very long

But most people experience pains (nerves, muscles and/or joints), muscular problems, headaches and their auto-immune system can be on alert constantly. And yes you’re tired, but it’s a bit of an under-statement. Some days, it’s more like exhaustion: on a bad day even feeding yourself or speaking is too much of an effort.

One very characteristic symptom is post-exertional malaise.

Post-Exertional Malaise (PEM)

This means that you get delayed payback for over doing cognitive and/or physical efforts 24 or up to 72 hours after doing it. Once you’re diagnosed, you understand better and can start managing it. But until then, it’s a real problem as you don’t realise you are making it worse.

A typical scenario is:

Day 1: I’m having a good day, I’ll catch up with all the things I didn’t do because I was so unwell

Day 2: that’s it, I’m getting better, this is finally over, I can do a bit more again today

Day 3: you’re worse than you’ve ever been, you have new weird symptoms

You rest for days and feel down until you get a bit better and repeat the cycle not understanding what’s going on…

No test to diagnose you

I was lucky it ‘only’ took 2 years to get a diagnosis, For most people, it’s longer. And while you wait for it, you make yourself worse because you can’t make sense of what’s happening to you. Your GP, family and friends, often don’t get it either.

It’s the kind of condition where you need to rule out many others first. For me it took:

  • lots of blood tests
  • a neurologist referral
  • a brain scan
  • a lumbar puncture
  • and another neurologist to finally get the diagnosis

No test means no ‘proof’

It’s something I struggled with. There is no way to be sure, and there are still doctors who think it’s not a real condition which doesn’t help. I got better 3 years after the diagnosis, not fully recovered but much better so there is still this doubt in my head: is this really M.E.? no way to be sure. But then every time I see a documentary about it where people explain how they feel, it brings it all back and resonates with me.

What M.E. is NOT

  • just being tired
  • always starting with a soar throat and fever (it didn’t for me)
  • all in your head (you might hear this a lot by family, friends and doctors…)
  • depression: when you’re depressed, you feel like doing nothing; with M.E. you would like to do things, but you can’t because your body fails you – Note: you can still have both M.E. and depression though
  • because you’re overweight: when you’re overweight, this seems to be the explanation to all your problems…they think that if you lose weight, all will be well (underweight or a ‘normal’ weight people have M.E. too)
  • because you’re getting old (here is another one I heard a lot: “there is nothing wrong with you, you’re just getting old”)

What helps

Having a diagnostic!

You’d think receiving a bad new about your health is hard, but for me it was great. Finally, I knew I had not imagine all this. I had read about M.E. before, but I didn’t think it applied to me initially. The neurologist took the time to explain why they thought this was what I had, in terms that made complete sense to me.

I was finally going to be able to stop wondering what was wrong, worrying about new symptoms and move on. I also got referred to a neuropsychologist. But it took so long to get to see them (over 6 months) that by that time, it wasn’t needed anymore.

Pacing

Pacing means learning how much you can do until you need to rest. Taking a break even if you think you could do a bit more. With time, you get to learn.

Adapt to it, learn your new limits, take it easy

Because every little thing adds up, I made life easier for myself: for example, using lighter chairs, higher bed so easier to get up, using a mattress topper so it’s easier to make the bed as it’s lighter, pick cutlery easier for me to hold, prefer slide-on shoes, using a pill box so I didn’t have to remember if I took daily medicine or not etc…

Speaking with other people with M.E.

Whether it’s online or face to face. We don’t experienced the exact same things, but there is still a lot in common and speaking to others who experience similar things really helped me at the start. I’m not doing it anymore though. I do occasionally share with people either recently diagnosed themselves or who have a friend or family with M.E.

I still remember a meet up where everyone was clumsy, dropping their spoon, forgetting the sentence they had just started etc… it felt so good to not be the only one like that.

Not making plans

I used to plan things a lot, I stopped doing that. Improvise and do something when it’s a good day. Rest when it’s not.

To be honest though, now that I’m better, I plan a lot 😉

Tai chi

I joined a group of pensioners and enjoyed it. Doing the slow movements as a group with the music was really nice. We were all told to only do what we could, so it suited me really well, helped me improve my mobility and be less isolated at a time where I wasn’t working anymore.

Physiotherapy

I requested it from my GP who accepted to refer me. I had lost a lot of my mobility. The physiotherapist was nice but didn’t know anything about M.E.; she did listen to me though which was all we needed to make things work out. I took it easy but progressively got most of my mobility back with regular exercises. It wasn’t GET (Graded Exercise Therapy) which is very controversial. It was just some movements to help me recover what I had lost.

Some links if you want to learn more about why GET is not that good for many people:

How it was for me at my worst

There are 3 levels of severity

Mild: mobile, can care for themselves, can do light domestic tasks, can still work and be in education, very little leisure

Moderate: reduced mobility, restricted in all activities of daily living, but have peaks where they can do some of their activities, have usually stopped working or education

Severe: unable to do any activity for themselves, can carry out minimal daily tasks like face washing and cleaning teeth, severe cognitive difficulties and depend on wheelchair for mobility. Some spend most of their time in bed with no light and noise

From Action for ME – what is M.E.

At my worst, I was moderate

It felt like my body was failing me. Every other day something new would go wrong, some things would get back to normal for no clear reason. I could not walk for more than 5min, struggle to hold something or press a button, was chocking on my saliva or bitting the inside of my mouth. I had balance issues, weird sensations under my skin, no position felt comfortable, I was aching all over, had cramps. Sometime it could be sharp nerve pain or the other way around: no sensation if I was hurting myself.

It was cognitive as well, which was worse because it felt like I could not trust myself anymore: I had short time memory issues, struggled to speak properly or could not understand simple sentences.

It was not all at the same time, but there was constantly something wrong. I was self employed and stopped working progressively after 18 months of this, not knowing what was going on and totally drained.

How it is now

It got better progressively over 3 years after it started. Mostly after the diagnostic and thanks to pacing myself. I tried to study one module with the Open University, and enjoyed it, so I ended up doing a whole degree from home over 4 years.

I later got a zero hours contract and did a few days of work a week initially and managed to work full time after a while. It wasn’t easy. I remember the first day on my way to work, I had missed a train because my legs were full of cramps and I had to stop to rest during a 15min walk to the station…

I’m mostly ok, but I know my limits

After 11 years living with M.E. I’m mostly ok:

  • I can walk for a long time, but I can’t run or cycle
  • I can walk faster but not for long as I’ll have cramps and aches quickly
  • I can stand for a while if needed but not for too long, this is because my muscles can’t hold the same position for too long. I need to keep moving and change position or I start aching and cramping
  • I’ve partially lost sensations in my hands and other areas of my body and this is not coming back, so I can be clumsy
  • I’m sensitive to light, smells and noises. Glasses with lenses getting darker in bright light makes a huge difference to me, I carry ear plugs with me if needed in noisy places
  • When reading or holding something, adding a cushion under the book help me rest my arms. I can’t hold a phone to my ear for more than 10min
  • I have migraines from time to time, still not completely sure what sets them but they don’t happen as often anymore
  • I deal better with the pains and they are not as bad as they were if I don’t push myself too much

If I over do it (work wise or else) weird symptoms come back and I now recognise this and rest before it gets worse.

Why long COVID reminds me of M.E.

Reading about long COVID these days brings back lots of memories to me . It’s very similar, and it might very well be the same thing (?).

In most cases, M.E. starts with a virus from which it feels like you never really recover.

People with M.E. often have high levels of viral antibodies in their blood. Many researchers believe that a virus or combination of viruses may trigger M.E., so the COVID virus could do the same? One of the sign of COVID is loss of taste and smell. Before all this started for me, I had my first brain scan because of a loss of taste. It came back and the scan was ok. But I used to get episodes of partial loss of taste from time to time after.

Maybe there is no link, but I do hope that now that so many people are affected, there will be more research done and that it will benefit both people with long COVID and people with M.E. If you want to read more about Long Covid: What is it and what are the symptoms? – BBC News Article.

DecodeME is a study about to start. The funding and study itself had been planned before COVID but they are now going to add some people with long COVID in their sample. If you have M.E. or long COVID and would like to get involved, fill in this form.

Very little research done on this

I’m sharing some videos below in the resources. Two of them highlight how very little money is going toward research. For example in this one : ME/CFS – A Brief History – The Lost Decades

  • M.E. receives 20 times less research funding than M.S. (Multiple Sclerosis) despite having more than twice as many patients in the UK. (source: ME/CFS research funding report 2016)
  • The vast majority of this money was spent on behavioural studies which failed to provide evidence for the psychological model as treatments showed no improvement on objective measures (one of the sources)
  • In the last 30 years, biomedical research into M.E. has been massively underfunded and no drugs are available
  • In a similar period, MS has seen a shift from: no treatment, to: 14 drugs available and 25 in development

Just to be clear: this is the data highlighted in the video, and they use M.S. as a comparison, but this is just to show the scale. I’m really happy that progress has been made thanks to the funding of research for M.S. and other neurological disorders.

On a personal note, my local branch of the Multiple Sclerosis Society has been a great support to me while I was waiting for a diagnosis.

Resources if you want to learn more

I hope this was useful. I’m no expert. I used to read a lot about it the first years but not anymore. If you have questions, get in touch with your GP and if they don’t take you seriously, keep trying to find a health practitioner who will really listen to you.

I have a few links which could help if you want to learn more:

Action for m.e is a good association with resources and a forum to discuss or the ME association.

The spoon theory, this is a great way to explain how your energy is limited when you live with a chronic disease. This little video explains it:

A short video explaining how the perception of the condition has changed over the years:

This TED talk from Jennifer Brea is also really good:

Edit 13/08/2023: There is an open consultation by the UK Government: Improving the experiences of people with ME/CFS: interim delivery plan. In particular, the part about language is interesting.