Living with M.E.

M.E. (for me) is like molten lava running through your veins. Both dull and sharp pain constantly afflicting the joints, bones and muscles, cellular dysfunction throughout the body including the brain causing energy depletion, cognitive confusion, digestive issues, unpredictable blood pressure drops and inability to control temperature but it doesn’t stop there. There are a whole range of symptoms people live with on a daily basis that compromises wellbeing and quality of life. Most importantly if anyone who has M.E. tries to push through and do too much they get worse, a phenomenon known as PEM (Post-Exertional Malaise or PENE (Post-Exertional Neuroimmune Exhaustion). This PEM/PESE is what sets the disease apart from other conditions that feature chronic fatigue and/or chronic pain, and why many people in the M.E. community refuse to call the condition CFS, chronic fatigue syndrome.

Living with the condition, M.E. (Myalgic Encephalomyelitis), as well as other co-morbities such as hypermobility, gallstones and pectus excavatum, has left an indelible impression on my life to the point that the sheer act of living with these conditions takes on the quality of a full-time career. I spend my days working out what energy I have and how I can manage it, researching treatments, studies, and potential cures, engaging with people in the M.E. community as well as speaking out about my condition to raise awareness and lobby for much needed change, and then dealing with the inevitable consequences of getting all the above energy calculations wrong and feeling the profound and sometimes long-lasting effects of PEM. When I can, I also write.

This page however is devoted to anything and everything about M.E, now known in the UK as ME/CFS following the publication of the NICE guidelines.

Here I will post links that I hope will be useful to people with M.E. to help them live with their condition whether they are new to the condition, or “long haulers” to borrow a phrase from the Long Covid community which is a post-viral condition with similar symptoms to M.E. It is likely that any resources for people with M.E will also be useful to people with Long Covid too.

I will also post links on people living with M.E. – how they are doing it and how despite incredible challenges people are able to continue to create, express themselves and advocate for people like them through art, music, writing, crafts, activism and more.

And of course if there is anything you may find useful that you believe I should host on this page please do comment below. I am currently at moderate to severe end of the functional ability scale of M.E. so it may take some time but I will get to it when I can,

Resources (updated November 2021)

  • A fantastic resource for background on M.E, history, treatments and specialists in the field is the aptly named ME-Pedia site created at curated by ME Action.
  • The review in the well respected journal Mayo Proceedings summarises the best clinical practice recommendations for the treatment of M.E. as of August 2021.
  • Stripy Lightbulb CIC has created an incredible e-learning package for anyone who wishes to learn more about ME in a professional capacity.

M.E. Community

There are many people living with M.E. who are sharing their stories and raising their voices to further the awareness of the condition. I will add links to their work when I can. In the meantime a great community of people can be found on Twitter that find each other with the hashtags #pwME, #MECFS and, more broadly in the chronic illness community, #NEISVoid.

The Low Side by Daniel Moore

Fellow Northumbrian, #pwME, who not only is a very talented writer but writes and sings powerful, evocative songs about living with ME. Link to his latest piece (at time of writing August 2022) exploring liminal space and the feeling of living in the in-between.

M.E. Organisations

There are many organisations globally that provide support and advocacy and/or identify and fund research. I have listed the main ones here and will add links to others as I go. Feel free to suggest any to me in the comments too if they are not listed.

UK

ME Association

Action for ME

Invest in ME Research

Doctors with ME

ME Foggy Dog

Tymes Trust

ME Research UK

Decode ME – this project is currently for people to get involved and join the largest genetic ME/CFS study.

Outside of UK

ME Action

End ME/CFS Project

Solve ME/CFS Initiative

European ME Coalition

Emerge Australia