What is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)?

Let’s ease in gently with the first of my 3 blog posts for ME awareness week (6 – 12 May). This is a post stating facts and then I’ll switch from facts to feelings as I talk a little bit about my experience of ME in my second two posts. I’ve provided a few hyperlinks but in all honesty it’s all a bit too much for me at the moment to go through and provide lots more. Plus lots of the papers I wanted to add in were behind bloody paywalls, which is kind of pointless for anyone not in an academic institution. Google Scholar is great if you want to look up any ME research and if you don’t seem to be able to get access then try Sci-hub. I guess the ‘proper’ way of doing things is to email the author and ask for a copy but despite Sci-hub looking a bit dodge from the outside it has saved my bacon more than once and provided me with a wealth of information very quickly! Anyway…

I’ve written ‘ME’ throughout, partly because it’s a little easier than ME/CFS, but partly because I feel like ‘Chronic Fatigue Syndrome’ trivialises the illness. It’s an add-on that you could affix to many an illness…and yet you don’t. Lyme disease/CFS, cancer/CFS, MS/CFS…I’m labouring my point now and I’m sure you understand, so let’s crack on.

ME is classed as a neurological disease by the World Health Organisation (WHO) and it affects about 0.2 – 0.4% of the population. That doesn’t sound like a lot but it’s approximately 250,000 people in the UK and it costs the UK economy over £3 billion every year. It’s entirely possible that as there is no diagnostic test for ME yet that that figure is an underestimate.

Symptoms

I’ll start by saying that having ME is no joke. People are generally classified as having mild, moderate or severe ME and as with most classifications like this the categories have woolly edges; ME is a spectrum. As the disease fluctuates people can move in and out of these categories.  People at the most severe end of ME are bed-bound and trapped in dark, silent rooms because they are so sensitive to light, sound and touch they have become prisoners in their own bodies. They require 24/7 care and many of them are tube fed because they can no longer swallow. People die from ME. At the other end of the ME spectrum you have people like me…and you can read about what that’s like in my next 2 blog posts. Plug!

Symptoms include (but are not limited to);

• Cognitive dysfunction. Often referred to as ‘brain fog’. This can include changes in memory, concentration and linguistic ability.
• Sleep disturbance: nightmares, vivid dreams, unrefreshing sleep, insomnia or conversely sleeping too much. I’ve read reports of some people with very severe ME sleeping for around 23 hours a day.
• Pain in the muscles, joints or nerves.
• Sensitivity to external stimuli such as light, sound, smell or vibration.
• Ongoing flu like symptoms.
• Orthostatic intolerance. Essentially problems with pulse and blood pressure control which leads to feeling dizzy or faint when upright.
• Alcohol intolerance.
• Gastrointestinal symptoms.
• Difficulty controlling temperature.

But the defining symptom of ME is post-exertional malaise (PEM). This is a delayed exacerbation of symptoms that occurs after physical or mental activity. I hear a lot of people refer to it as ‘payback’. You do something fun, something beyond your limits and you start paying for it an hour, a day or two days afterwards. PEM can last for hours, days, weeks, months or trigger a full relapse that lasts for years. It’s unpredictable.

Cause

The onset of ME is often linked to a viral infection but for some people it is tracked back to another event such as chemical exposure or another physical trauma. ME can affect multiple members of a family suggesting that genetics may be a factor.  Several differences in an ME sufferer’s DNA, known as polymorphisms, have been found and certain genes have different expression profiles.  

Pathophysiology

There’s some exciting research into the ME disease process but as far as I know it’s yet to be convincingly pieced together. ME research is incredibly underfunded…but then I guess you could probably say that about most diseases and you’re probably more likely to say it if you have it!

ME is generally referred to as a complex multi-system disease…which covers a lot of bases! It has been shown that there are abnormalities in the immune system, central nervous system, endocrine system and in the muscle. In terms of immunological dysfunction; low level systemic inflammation has been found as a result of irregular cytokine activation (cytokines help signal between cells), there are also records of reduced natural killer cell activity (a type of white blood cell that deals with threats to the body) and there is some evidence of an autoimmune aspect to the disease. As for the central nervous system; there are reports of abnormal proteins and white blood cells in the cerebral spinal fluid, neuro-inflammation and differences in the amount of grey and white matter in the brain. Studies recording abnormal levels of cortisol released from the adrenal glands suggest dysfunction in the endocrine system. There is also a growing body of evidence that points to problems with the mitochondria (most of us know these as the ‘powerhouse of the cell’). Problems with the mitochondria can impair and reduce the function of muscles.

All in all the pathophysiology is still a jigsaw with many pieces missing, but we know more than we’ve ever known before and this growing body of evidence shows that ME has a physical root, not a psychological one.

Diagnosis

ME is often diagnosed after a lingering and significant reduction in a person’s health and activity levels. There are no diagnostic tests (such as a blood test) for ME at the moment although there are research groups that are inching ever closer. Currently, ME is diagnosed by excluding all other possible causes of the symptoms presented to the GP and by using one of several diagnostic criteria. The most commonly used appear to be the Fukuda criteria and the Canadian Consensus Criteria but a much more complete, and extensive document came out recently (Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness). 

Treatment

There are ways to treat the symptoms but not the disease (yet). Most commonly people are prescribed medication to treat the problems with pain and sleep.

Aside from medication there are other ways of managing pain and fatigue such as meditation, pacing, warm baths and massage. I remember when I first read that these helped ‘treat’ ME that this suggested that the disease was more psychological and I didn’t trust that they’d help at all. For me though, massages and warm baths did wonders to help me deal with the pain and meditation and pacing helped me to re-evaluate what rest and recovery means within the new limitations and confines of ME.

Often ME sufferers still get prescribed GET (Graded Exercise Therapy) and CBT (Cognitive Behavioural Therapy). Originally, I believe CBT was given as a treatment because it was thought ME sufferers had developed a fear of exercise and exertion. That little nugget makes me roll my eyes every time. Anyway, I wouldn’t necessarily balk at CBT. I think it depends entirely on who is treating you. CBT can teach you great strategies to deal with the pain and exhaustion and if it’s given in conjunction with counselling it can help you grieve life pre-ME. Essentially, it’s probably not going to hurt…what probably will hurt is GET. I’m not going to go into this too deeply but GET was designed as part of the “PACE trial”. This trial is highly controversial and with just a quick google you can read yourself about the many reasons it’s now heavily scrutinised. In short, over-exertion when you have ME is dangerous and it can lead to a drastic worsening of symptoms. What it won’t do is cure you because you’ve become ‘deconditioned’.

On a final note there are many programmes out there (*cough ‘lightening process’ *cough) that claim that they’ll cure you if you pay ££££’s and follow their recovery plans. Now, ME sufferers get understandably desperate and there’s often an ‘I’ll try anything’ to recover attitude, which is understandable. I personally think that a lot of these programmes prey on that desperation…and maybe some of them do help some people. I’d just advise caution when somebodies asking you to pay lots of money for an amazing, simple, underknown cure (*cough ‘snake oil’ *cough).

Prognosis

Oh dear lord, who knows?! Some people gradually get worse until they’re completely bedridden and unable to look after themselves. In rare cases people deteriorate until their body completely fails them and they die. Other people suffer a fluctuation of symptoms, sometimes well enough to live a relatively normal life, sometimes not. Others recover. As far as I know these are also a rare bunch, but maybe they slip through the net and are under-reported. Even then I think it’s unusual for someone to recover to pre-illness levels. Without a clear diagnostic process in the first place I’m not sure if there is enough data to give accurate figures.

So, yeah that’s a brief run through of some ME basics. If you want to know more I suggest you take a look at the ME Association website which is just wonderful.

Thanks for taking the time to read this. It’s obviously super close to my heart and makes me feel super vulnerable to talk about something I do pretty well to avoid talking about day to day. So, yeah, cheers. You’re a champ!