May 9th-May 15th marks ME Awareness Week 2022, in amongst ME Awareness month. In a society where the condition is still not fully understood, researched enough, or talked about, the importance of this week can’t be underplayed.
ME, or Myalgic Encephalomyelitis, is a chronic condition that affects around 1 in 250 people in the UK. Symptoms vary from person to person, but some of the most common include extreme fatigue, body pain, brain fog, unrefreshed sleep and sensitivity to light and sound. It is commonly misconstrued as being a condition which makes people a bit tired sometimes, which is another reason why awareness on the matter is so crucial.
There is currently no ‘cure’ for CFS/ME. Any treatments given simply aim to relieve symptoms or help to manage them. The majority of people with CFS/ME will improve over time, especially given the right treatment and work put into recover. It’s likely that symptoms will be better or worse over periods of time, so even after ‘recovery’ people still tend to have flare ups, especially when over-worked or emotionally drained. The more people who know how to help, look out for signs of a flare-up or even just encourage those with ME to pace themselves, the better we can cope with it as a society and perhaps even avoid such crashes.
There is always hope for people with this condition, as former Royal Harpist Claire Jones has proven.
Claire started experiencing symptoms of ME when she was at the peak of her career. Performing all the time at high-profile events, travelling constantly and the pressure of her job resulted in her having an ME crash, and subsequently having to get used to managing the condition whilst continuing what she loved.
On learning to live with the condition, Claire said: “It was learning my limits, and knowing what my boundaries were. It took me about 18 months to get used to it and to get a balance with the boundaries and know exactly where my limitations were”.
This is one of the perhaps hardest things that ME patients have to adapt to. Going from your usual daily schedule to realising your body can’t always handle it is hard, but we are making steps in the right direction as to understanding how we need to do this.
Speaking about how she felt in terms of research and support available, Claire said “I feel there is definitely a lot more available nowadays than there was to help this terrible, debilitating illness. It is hard though as it is so difficult to get diagnosed, and you are very fortunate to be able to find someone who can diagnose it, so in the medical world I think we need to get better at that”.
We have all had to experience lockdown measures and enforced isolations, but for 13,000 people of the Welsh population, this was a life they were used to already, it’s just not many people knew. So, on your next break or when you have 5 minutes, have a little read about ME. It can affect anyone at any time, so who knows, you may well be able to use it as support for another one day.