And Here You Are Living, Despite It All

Friday 31 December 2021

I can’t quite believe we are at the end of another year. 2021 has been another extremely trying year worldwide but personally, I have felt the effects of the last two years weighing heavily on me most over the last few months in my own world.
Chronic illness isn’t easy to live with, even more so when you’re in the aftermath of a pandemic, as the medical care is even more lacklustre than it was before and the heavy toll of it all can trigger flares, anxiety disorders and trauma.
With next year being the 30th anniversary of M.E. Awareness Day – May 12th – I’m going to be delving deep into the last thirty years of advancement in all aspects of Myalgic Encephalomyelitis. However, I thought that perhaps, as this is the last blog post of this year, I should try and summarise it all a little and give us all some hope going into a new year as well as continue to fly the flag for more awareness for M.E. and chronic illness.

There has been a lot of controversy, the last few years especially, over finding a more universally accepted name than “M.E./CFS”, and this was highlighted in 2015 when a report by the United States Institute of Medicine stated that M.E. was a legitimate illness. Although this was great progress, the M.E. community was much more interested in a focus being put on biomedical funding instead of what name should be given.

There are an estimated 265,000 people who now suffer from M.E. in the UK alone. The figure is only estimated due to the fact that there is a possible 90% of people who suffer from M.E. who are still undiagnosed. That’s an estimated 265,000 people who are hoping and praying for relief, who want to get back to some sort of better life. That is why biomedical research is so important; sadly, it is still very much underfunded.

There are, however, hundreds upon hundreds of published research projects going on all over the world, all taking very detailed and specific routes to finally give us and, more importantly, the medical world some answers. The ME Association is one of the most well-known; it is funding research through the ‘Ramsay Research Fund’, which was named after Dr Melvin Ramsay, who first brought M.E. to the attention of medical professionals in 1955. ME Research UK is another UK-based charity and its primary aim is to fund biomedical research into M.E. and its causes, and ultimately find a cure. They have a whole list of Current Projects as well as categories for what is being researched and where they post their results and findings. Even though it is frustrating that biomedical research is underfunded, there are still people out there striving every day to further move the process of finding answers. Reading some of the projects and findings can really be fascinating as well as rejuvenating because it shows that they are not only nearer to proving it is a neurological disease that holds weight in the medical profession, but also moving further away from the stigma of psychosomatic illness.

M.E. Support has a plethora of information about Myalgic Encephalomyelitis in the M.E. Information section, which also includes a summary of past and present key research studies.

Awareness helps these charities and other M.E. Organisations to keep momentum going into research as well as highlight how our community has been treated by medical professionals and to show we are much more than some sort of permanently exhausted koala soul in a human body. Both the ME Association and ME Research UK have ways in which you can help them, whether it be fundraising, signing up for regular donations, or memberships; even shopping online can raise money for them.

In May 2022, I will be releasing multiple posts in relation to the progress being made in biomedical research and medical profession changes to M.E., and also looking at some of the fundraising that is happening for M.E. Awareness Day and beyond. You can read more about May 12th here on M.E. Support and if you, your friends or family are thinking about fundraising for this event, please do Contact Me and I will feature you and your efforts in my anniversary project.

Don’t forget that spreading M.E. awareness isn’t just for May 12th; we need it every day to make more of an impact. Follow the M.E. Support Facebook Page and like and share posts, as the bigger the reach, the more M.E. awareness is being created. M.E. Support merchandise and promotional material helps raise Myalgic Encephalomyelitis awareness all year round. Iconic blue awareness ribbons and pin badges are available from the M.E. Support Online Shop.

There are a lot of exciting things coming from us here at M.E. Support next year. As always, Louise is working hard to expand content on this website, to keep up with the growing demand, along with launching new services. I hope to collaborate with Louise to bring you the M.E. Support E-book, which has been an idea Louise has had for a while. Your support means the world to Louise and the team here and any Donations to help keep the services available is invaluable.

When we are in our own little bubbles, chronic illness can truly feel like it is a never-ending void sometimes; unfortunately, some experience this far more often than others, and you can feel isolated, hopeless and alone. I hope this post helps you get through those days, knowing that even though we’ve got more work to do, the M.E. community has come a long way in finding answers and changing views, and is a step closer to making the ‘invisible’ come back to life. You are a warrior, fighting every day and no matter if you win the battles every day or if it’s small victories, you are incredible, strong and never truly alone.

I wish everyone all the best for 2022 and I hope you join me and the M.E. Support team next year as we continue to work hard to support the M.E. community and beyond.