Six summer themed photographs about ME/CFS

Still mid-way through my photo project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome. I hope these mini series are enjoyable.

Please note that ME/CFS affects multiple bodily systems and symptoms are not uniform between sufferers, and nor from one day to the next. I’m not trying to be representative of all forms of ME/CFS here, but to offer a basic flavour.

Summers spent indoors

Summer is brutal for me as a newly heat sensitive person, so I have to apply greenhouse shading paint to the windows that we can't shade or it can become unbearable indoors. It feels a bit claustrophobic, but for me it's far better than cooking alive. I can make out the trees in the park glowing in the afternoon sun. I can't wait to be more functional and enjoy summer once more rather than hide away indoors from it.

Heat sensitive, flagging

ME/CFS has made me heat sensitive. I used to love the sun, summer and hot weather. Now, ready for when the sun is strong June-Aug we've had to paint the sunny side of our dark red brick house with white masonry paint, install solar reflective glass upstairs and get vents in the roof space, plus drape cotton sheets over the windows, just so I can be comfortable. If our bedroom is too hot - even by a few degrees - I struggle to sleep, which really impacts me.

Sunshine, viewed from indoors:

ME/CFS has made me sensitive to heat, whereas I used to love being out in the sun, and quite ok with decent amounts of heat. Every day that's 21oC+ I have to intervene to keep our house cool or I struggle, feel even more fatigued and sleep suffers too. I drape cotton sheets over the outside of all sunny-side windows and keep all windows closed til the heat of the day has passed. It feels a little stifling and it's an extra effort every day. Yesterday, it was 30oC+ in our garden, yet only 22oC indoors, so it pays off, even if we do feel rather cooped up.

Nature watch

Some chicory self-seeded amongst the pyracantha that we let grow big for the bees. We don't get it trimmed til the birds have had all the berries. This also provides a little shade from the morning sun. It's rewarding watching nature arrive for its feast. If we sit still enough the birds are quite unfussed about feeding here.

Endlessly waiting for progress

I'm around 30 years into ME, life limiting for past 15 years and housebound for three/four years. On a good day I put the bins out. On an exceptional day I might handle being driven somewhere green/pretty/seaside-y in the car, where I remain for an hour or so to enjoy the view. Now reliant on state benefits I can no longer afford private tests, therapies, explorations, so I'm now institutionalised in our welfare state and health system. The UK's (otherwise excellent, but massively under funded) NHS doesn't seek to treat ME, it just tries to make it a little more bearable. It's a decade behind private practice, and could learn a lot and help hundreds of thousands of people if it awarded the funding to ME. ME is considerably under-funded compared with other diseases whereby people are able to enjoy a much greater quality of life. Currently, we're somewhat neglected. We wait, exhausted, in hope.

The years pass by

It's hard coming to terms that the person you understood yourself to be - the things you enjoyed, the career, dreams and opportunities you were working towards - have all been taken away by an underlying disease that you didn't know you had. A disease most people don't understand, that science hasn't fully fathomed and that is massively under-funded, mis-treated and misdiagnosed by the institutions that are supposed to keep you safe. My mind wanders; where will this lead, will I recover or will I get worse, will this disease eventually take my life as it has so many before? Will 'a cure' be found, or will it be multi-disciplinary approaches? How will I afford private treatment now I can no longer work? Who am I now?

Millions missing (this section largely unchanged)

It’s thought 17-24 million people world wide suffer with ME/CFS, also impacting their family, carers and community. 50% of Long Covid sufferers meet the diagnostic criteria for ME/CFS. Now, around 5% of the global human population has or has suffered from Long Covid, that’s 400 million people, plus their lives, family, friends, vocations all impacted by this insidious disease. We don’t yet know how this will pan out.

You can read more at; https://me-pedia.org/wiki/Myalgic_encephalomyelitis

Currently many (most?) sufferers have to navigate an often under-informed health system, self-advocating whilst also being seriously ill. Further, many sufferers have to self-fund treatment, supplementation and adaptations privately where there isn’t public or insurance provision, or sufficient welfare support. ME/CFS has a ‘quality of life score’ considerably worse than many other diseases, yet receives a fraction of the funding, education and awareness.

There is not yet a single ‘silver bullet’ cure. It’s a complex multi-factorial condition, but it *isn’t* acceptable for health professionals to relinquish their medical curiosity at the point of diagnosis. This is when their medical curiosity and motivation should kick in!

Health improvement may be found through identifying and alleviating contributing and compounding health factors and managing symptoms effectively.

Recovery can be elusive and protracted. Sufferers may live with the condition for months or decades. Some become house or bed bound. Others make a more full and/or faster recovery.

More funding to find a cure is urgently needed. Better education for the health system is urgently needed. Community groups will welcome any support you can offer meanwhile.

If you know someone suffering ME/CFS or Long Covid please do offer to stay in touch, in spite of them seemingly withdrawing from your normal means of contact. They will really appreciate it :)

Thanks for reading!