Myalgic Encephalomyelitis (ME) support

So Myalgic Encephalomyelitis or ME for short, is a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.

It can be exacerbated following minimal physical, cognitive, or emotional exertion, making everyday tasks or activities much harder and sometimes impossible, than those that don't have the condition, and can leave people with ME feeling really debilitated.

Whilst there are the key signs that I've just mentioned, not everyone with ME experiences the same set of symptoms and the illness can vary, including how long symptoms last.

One charity, The ME Association, estimates that around 404,000 in the UK have ME, and another charity Action for ME estimates that one in four people with the illness are so severely affected that they are house or bed-bound by the condition.

The issue around language stems from the condition often being referred to as chronic fatigue syndrome, so you might see it written down or described in some cases as ME/CFS. However, many of those who live with the condition will tell you that chronic fatigue is just one of the symptoms of this illness, as I've just described, so it's really important to make that distinction if the term CFS is used. Being clear that this isn't just about being tired, it's so much more than that.

Researchers are still investigating the causes of ME, but there is some evidence that points to neurological and immunological reasons. There's also the suggestion that the illness may consist of several distinct types or sub-groups.

There's also some evidence that certain infections, like viruses, can trigger the illness, and interestingly, ME has long been recognised as a 'post-viral syndrome' as well as a neurological condition by the World Health Organisation, and the NHS.

That said, there are no peer-reviewed studies that absolutely confirm the cause at this stage, but there's lots of important research taking place to try and figure it out definitively.

As we mentioned last time we spoke about ME, a study called DecodeME has had a breakthrough looking at ME as a genetic condition. They identified at least eight genetic signals where people with ME differ from those without, linked to the immune and nervous systems. These new findings provide validation for those with ME and exciting new avenues for research.

As I've said, people report lots of different symptoms of living with ME, however, to receive a formal diagnosis from your GP, the key symptoms that should all be present are:

Firstly, debilitating fatigue. What we mean by that is fatigue that is worsened by normal activity. We're not talking about being tired after excessive cognitive, physical, emotional or social exertion, so after a workout or a particularly hard day at work for example. This is normal, routine activity like going to the shops, walking up and down stairs or even just the simplest of movements. This fatigue is also not significantly relieved by rest.

The second symptom is something referred to as Post-exertional malaise or PEM, and this refers to not only the symptoms that people experience with ME, but the fact they're often delayed in onset by hours or days, those symptoms being disproportionate to the activity, plus a much longer recovery time.

Thirdly, sleep. Struggling with disturbed sleep is a key symptom, or even getting what seems like a good night's sleep but still waking up not feeling refreshed.

Feeling exhausted, feeling flu-like and stiff on waking with broken or shallow sleep, altered sleep pattern or hypersomnia are also other key symptoms related to sleep.

And the fourth symptom is cognitive difficulties. So you might find recalling words or numbers hard, you might have difficulty speaking, your responses might be slowed, short-term memory gets worse, and you might have difficulty concentrating or multitasking, which is often referred to as 'brain fog'.

If you've been experiencing all four of these symptoms consistently for three months then there's a case for you to book in with your GP to discuss the possibility you might have ME.

One complication with this is something relatively new, which ME charities are now offering support with and that's Long COVID. Brought on in some after contracting the COVID-19 virus, Long COVID can present a whole range of symptoms that in some people result from organ damage caused by the initial infection, and in others more closely mimic those seen in ME.

So it's really important to write down what you're noticing in as much detail as you so you have something to take to present to your GP.

Scientists haven't yet found anything biological in ME that they can actually test for. So as well as those key symptoms being present for at least three months, a doctor might assess medical history and conduct basic tests, for example on blood or urine samples, to rule out other conditions.

You might have to visit the doctor a few times because excluding other conditions is an essential part of the process for a diagnosis to happen. The earlier the illness is recognised, the sooner symptom management and support can begin.

If you are diagnosed, your GP may be able to refer you to an ME specialist, if there is one in your area, who can offer options for managing your symptoms.

There is no cure or specific drug treatment for ME, but symptoms can be supported and managed. Research is continuing to better understand the underlying disease process and to develop preventative measures and treatments.

Some people with ME fully recover or recover to a degree, the reason for this is unclear. However, the majority of people with ME remain ill for decades.

Care should be personalised and may include: energy management, or pacing, which means learning how to stay within your energy limits and balance rest with activity, sleep support, pain management, nutrition support, mobility aids, education/work adjustments and psychological support where helpful.

There's lots of information on the NHS website and organisations out there that can offer help and support.

If you know someone with ME, you can support them in many ways. The most important thing is to believe the person. ME can be invisible, unpredictable and very isolating. Not a lot of medical professionals are aware of it or have the understanding to support a person with ME, so they need all the support, from friends and family, that they can get.

Helpful support might include practical help with food, appointments, childcare, housework or admin, adapting social plans so they are lower-energy, accepting cancellations without guilt, avoiding pressure to 'push through', and asking what genuinely helps rather than offering quick fixes.