Have you ever felt great fatigue or bone-deep tiredness? A kind of malaise that no matter how hard you try, you can’t get out of bed or do anything for yourself?
I am sure we have all felt tired in one way or another. But what if I tell you to imagine the worst fatigue you have ever felt, multiply it by 10 times, and see yourself experiencing that kind of chronic fatigue 24 hours a day, 7 days a week?
This is the reality that people with Myalgic Encephalomyelitis or M.E. confront every single day. And the thing is, this can become your reality too. Or that of your friends and loved ones.
Unfortunately, M.E., also called Chronic Fatigue Syndrome (CFS), is not getting enough medical attention and often dismissed even within the medical profession. The Guardian reports that this has resulted in many people suffering in silence and dying from the condition. In particular, Wales Online notes that Wales is lagging behind in terms of providing patient support. This inaction is brutally described in this video:
With M.E. sufferers bound to their beds and powerless to speak for themselves, the M.E. Support in Glamorgan (MESiG), a charity supporting patients with the condition, launched #SpeakForME. This campaign seeks your help in calling for intensive research on the condition and proper care of M.E. sufferers.
How can you help? Here are five simple steps you can follow:
Step 1: Know and understand the disease.
There are currently a lot of information about the condition available on the Internet. We call on you to educate yourself about M.E. The National Health Service provides a wealth of information on the disease.
Step 2: Participate in activities that amplify attention on the condition.
Last year, MESiG put pairs of shoes on the steps of the Senedd to highlight the “missing people” suffering from the disease.
Photo Credit: Julie Morgan @juliemorganLAB
M.E. Awareness Week is fast coming up on 11-17 May this year. Check out the website of MESiG for upcoming activities that you can support and participate in.
Step 3: Join online discussions, sign petitions.
Actively seek out online discussions on M.E. Participate, ask questions, engage with others, share with friends and families. These simple actions can hopefully lead to a snowball effect that will get others talking, thinking and advocating for M.E. research and treatment.
Step 4: Speak to your GP or any member of the medical community.
As the video and The Guardian article suggests, the inaction of the medical community has led to patient suffering and loss of lives. If you can, talk about M.E. to your GP, your nurse neighbour or a medical student you know. Engage as many people as possible in the medical profession on the condition. Who knows, it may be a good learning session for both of you!
Step 5: Support fundraising activities for advocacy and research.
Advocacy work requires consistent effort. And this needs financial resources. Help out charities like MESiG continue their work by supporting their fundraising activities. On 13 May, MESiG will be holding a concert to raise funds for their advocacy work. Check the MESiG website regularly for updates on this event!
All these are simple activities that when done by several well-meaning persons like yourself, can do a lot towards generating attention for M.E.
Together, let us #SpeakForME.