M.E., Myself and My CFS

by - January 21, 2018

Welcome to the first post in M.E. Myself and I, a series where I whine talk about my Chronic Fatigue Syndrome in an attempt to keep the conversation about chronic illness going, inform the uninformed, and, I hope, maybe even help others in the same boat! Please take all advice/opinions/explanations with a pinch of salt - I'm an Arts Grad, not a Doctor.

Oh yes, I'm doing a series like an actual proper blogger with a plan and stuff. This idea has been rattling around my mind for months now and I've decided it's finally time to release it unto the world and see what happens.

First off, a few disclaimers:

  1. This might be a long one. There's a lot to say, and a lot of context to give, so feel free to skip about, skip it entirely, or at the very least make yourself a brew before you sit down to read
  2. As stated above, I'm not a doctor. Please don't take anything I say below as gospel - it is almost certainly not
  3. Although I'd like this series to be useful and interesting to people with all kinds of chronic illnesses, the one that I have in particular - and therefore the one I know the most about and the lens through which I'm writing this - is Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, or CFS/ME. Personally, I tend to call it CFS (although for the purposes of the name of this series, ME obviously works better in pun form), mainly because that's what my doctors have been calling it, but all of the above names and acronyms refer to the same symptoms and syndrome

Ok, we've got a lot to talk about so I won't fluff out the preamble any more - let's dig in!


I'm glad you asked! Read this and/or this, for official medical explanations. For an explanation for someone with no medical qualifications, and tbh very little understanding of how the human body/anything works (it's like that episode of Magic School Bus where they go inside the kid's body and all of the blood cells have his face, right?), do read on:

CFS is a physiological disease (recently re-classified as such - for a long time it was considered a mental illness, which is a whole other kettle of fish I can't even with rn) which we basically know very little about. It can affect anyone of any sex/age, but it seems to most often develop in women in their 20's or 40's - because obviously us ladies don't have enough to deal with.

In a nutshell, CFS does what it says on the tin - it's a syndrome that makes you fatigued, chronically. Note the key word there is fatigued - not tired. 

Having CFS isn't the same as feeling like you've not had a decent night's sleep - it's more like feeling like you've not had a decent night's sleep for a year or so, then decided to run twelve marathons back-to-back, and also drunk an entire bar's worth of tequila (AKA Satan's tipple) the night before and you have a massive hangover. It's an all-over exhaustion that affects not just your body but also your mind, making you feel mentally sludgy as well as telling your body that every action you make is costing you ten times more energy than it usually would, so something as simple as going up a flight of stairs or moving from one room to the other becomes something you have to take an hour-long rest to recover from.

It's also worth noting here that the sort of tired you get from CFS isn't the sort of tired you can sleep off. At my worst, I could sleep for 12 hours and still wake up feeling knackered.

Of course, it's not like that for everyone, and it's not like that every day.

Broadly speaking, there are three 'types' of CFS: mild, moderate, and severe - which again, are all named pretty obviously. If you have severe CFS you're more than likely bed bound and able to do very little for yourself; if it's moderate you're perhaps housebound but you can move about and do some things; and if it's mild you might even be able to do most of your day-to-day activities with some modifications and lots of rest. This page has a more in-depth and very useful 'scale' if you want more information.

Personally, I'm very much in the moderate category at the moment - on the M.E. Support scale, I'm probably at a 60-70% as of January 2018. As I said above, some days can be better or worse than others, which is (for me at least) one of the more frustrating things about it. This can also lead to issues when it comes to recovery - but we'll get to that later!

Right but, what are the symptoms?

Per the NHS, common symptoms of CFS (alongside being REALLY F*CKING TIRED ALL THE DAMN TIME) are:

How do you get CFS?

That's a bloody good question and believe me, I wish I knew the answer. Or, like, anyone did.
Doctors, researchers, and people on the internet *think* it can be caused by getting a post-viral infection, or possibly by a specific microbe in our guts, or maybe by high levels of stress and therefore adrenaline, or potentially by an evil fairy getting pissed off that your mum and dad didn't invite her to your naming ceremony and cursing you to one hundred years of foggy-headed, achey and unsatisfying slumber the moment you prick your pretty finger on a spinning wheel.

Yeah but... how did you get CFS?

Oops sorry, I'm with you now. Well, as far as I'm aware none of my godparents had to hide me away in the woods until my wheneverth birthday, so let's go with one of the other options shall we?

Long story short, in February 2017 - literally on like, the first Monday of February 2017 - I came down with what I thought was a bit of a cold. I remember sitting down at my desk in the morning and telling my manager that I was suddenly feeling kind of iffy, making a joke about being allergic to the office. The next morning I woke up and I could not get out of bed.

What followed was about a month of one of the nastiest viral illnesses I have ever had. It was like the flu and glandular fever (which I had when I was about 13/14, and a past history of which is common in CFS sufferers, fun fact!) had a baby and infected me with it. Finally, after almost four weeks of non-stop headaches, earaches, sore throats, sneezing, coughing, barely eating and mainly sleeping - plus a sprinkling of doctor's appointments in which they told me sadly that they couldn't prescribe antibiotics, wrote me sick notes for work, told me to drink lots of fluids and suggested I paint a cross on my front door to let my neighbours know that the plague was upon us - I felt well enough to return to work.


From April to May (maybe? It's all a bit blurry), I could not shake the dregs of my viral-ly symptoms. The sneezing and coughing had gone (good news for the trees of the world, since I must have gone through a forrest's worth of tissues), but the achiness and exhaustion remained. I would go to work for a few days and then have to call in sick, or work from home and finish early. I cancelled any and all extra-curricular activities, and spent my evenings and weekends in bed or on the sofa, trying to snooze away the yuckiness so that I could get on with my life.

Initially, my GP thought I had a post-viral infection, but when I continued to not get better, we started doing blood tests.

Oh, the blood tests.

So. Many. Blood tests.

Here's the thing about CFS: the symptoms overlap with pretty much every other illness imaginable. And since they don't know what causes CFS, and therefore don't know what to look for to prove you have it, in order to make an official diagnosis doctors need to rule out all other possibilities. Which means a lot of blood tests. As a useful guide, the ME association has a list of all the tests that need to be done to get an official diagnosis, which is something I didn't have until very recently and would have actually been super helpful about ten months ago.

Anyway, the blood tests basically kept going until sometime in October. Which meant that for about nine months I was in a weird limbo where I was endlessly waiting to find out what was wrong with me, whilst also being periodically signed off from work every two or three weeks because I couldn't actually function properly.

Such fun!

Around October/November, the doctors shrugged and said that they'd ruled out pretty much everything else, and that they were happy to give me a working diagnosis of CFS. However, that was pretty much all they could do for me, which brings me to...

How do you treat CFS?


Good question.

As with the cause of CFS, there is a lot of debate over how one is supposed to get better. Because, as I keep saying, they aren't sure why it happens, there isn't a magic pill or course of medication you can take. Sometimes you will be prescribed things to help with certain symptoms - anti-depressants are common, to help with sleep and the fact that you basically have to check out of your life for a little while - but in terms of treatment that (in my experience, anyway) is as far as you can get with your standard GP.

Now, I'm going to add one more quick disclaimer here:
  1. I think the fact that we have the NHS in the UK is brilliant. I am 100,000% behind health care being available to all and I will fight til my dying day to preserve it. I have had treatment through the NHS in the past that would have cost me upwards of £1000 privately and I am well aware of what a privilege that is.
HOWEVER. Nothing is perfect, and as any Brit will tell you if you're unlucky enough to get them onto the subject for long enough, the NHS certainly has its flaws. One of the ones I've been coming up against a lot lately is that there are little to no resources for CFS - or many chronic illnesses, in fact. 

Which makes me feel like this:

Broadly speaking (and if you want to know quite how broadly, do a quick Google for 'CFS treatment' and read any of the raging wars going on in comment sections), there are a small handful of treatments recommended for CFS (see here):
  • CBT | otherwise knows as Cognitive Behavioural therapy - the idea behind this is that you work with a therapist to change the way you think about your illness, and understand how your behaviour can affect it. Unsurprisingly, this method is met with a lot of frustration and annoyance in the CFS community because of the implication that you can 'think away' your symptoms. Personally I've had great success with CBT in the past when it comes to my issues with anxiety, and I can understand how learning to think positively could help your mental health as CFS is an incredibly frustrating condition, but I have to admit I struggle to see how it can help when it comes to the physiological symptoms - which is basically all of them
  • GET | or, Graded Exercise Therapy. This one makes more sense to me - it's basically a sort of physiotherapy programme where you increase an activity in tiny, tiny increments so that you can build up your stamina
  • Activity Management | to my mind, this is very similar to GET, although maybe a little bit more all-encompassing than just physical activity. This is also known as pacing, and is the act of breaking up your days into different blocks of activity at various levels (low, medium, high) plus scheduling in specific 'rest' breaks. Like with GET, the aim is to increase the activity blocks and decrease the rest ones over time, until you are back to something like what your 'normal' activity level would be
From what I've read, heard and experienced, the best treatment is a combination of all three - learning to adjust your way of thinking - and generally living - through managing and ultimately increasing your activity levels.

Of course, the above are just the treatments that medical professionals advise using - there are also boatloads of alternative therapies out there that people will swear up down and sideways worked for them. Put CFS into Pinterest and you'll find umpteen 'How I Got Over M.E. In Six Weeks' posts from people singing the praises of yoga, certain vitamins and supplements, Chinese Medicine and a bazillion other things. I tend to take these with a pinch of salt, but that doesn't mean I don't also try them out every now and again. 

So, what are you doing? 

I've been quite lucky (although my acquaintances, now that I think about it, have not...) in that I actually know a few people who've had CFS in the past. Now, just the fact that they refer to it as 'in the past' was enough to give me hope, but they've also all been amazing in giving me recommendations of what to try. Currently I'm taking a few different supplements and also going to a fantastic acupuncturist in Cardiff, and I will prossibly (probably/possibly) talk about these things in a future post.

That's not all I'm doing, though. After finding out that none of the above NHS-recommended treatments are available to me on the NHS in Cardiff (or possibly Wales), and that it would be 'very difficult' to get me onto a programme in England (despite the fact that I am, you know, English and it's the National Health Trust in the United Kingdom, but whatevs - that's a rant for another time slash never), I had to look elsewhere.

Meaning, I had to go private. This is, again, where I need to point out that I am incredibly aware of my privilege in that I have the funding available to pay someone to help me get back to work. I am super lucky that the job I have has a really good sick pay policy, and that my parents are able to help me out in paying for sessions. I can't really wrap my head around how I'd feel if I didn't have these resources and was looking at losing my job because of an illness I can't pay to treat.

Currently, I am a patient at a clinic that literally only treats people with CFS, and I have fortnightly Skype calls with a brilliant lady who helps me to draw up graded activity charts and talks me through planning to go back to work and discusses different things I can do to get rest time in and is essentially answering all of the questions that I spent much of 2017 frantically trying to get answers to.

For me, this is a game-changer. Having someone who knows what they're talking about, and has treated other people with the same problems and can give me the tools that my brain fog wasn't letting me learn for myself is exactly what I needed. 

Plus in case I haven't mentioned, I really like having a plan.

What next?

I'm really kind of excited about where this series could go. Since I got diagnosed, I've been all over the interwebs looking for information on CFS and similar conditions, and I always find it a lot easier to read personal accounts than the super dry associations and charities. It would be great to hear from you if this post has helped you in any way, and - if so - if there's anything you'd particularly like to learn more about in the future!

And, well...

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  1. Hello Frances! Happy to have found your blog and looking forward to the rest of this series. You've posted some great info here.

    Following you on Twitter now too. There's a weekly "ME Awareness Hour" on Twitter if you're ever interested to join us there. Wednesdays at 8pm.

    1. Thank you! I will definitely join in with the awareness hour, that sounds really helpful xo

  2. Hi Frances - very pleased to meet you on Blogging in Bed. There is a fantastic community of chronic illness bloggers out here who are very supportive. I have shared your link on my regular feature on PainPalsBlog "Monday Magic - Inspiring Blogs for You!" Claire x

  3. Amazing, thank you so much! xo

  4. Absolutely fantastic article. Learned so much!