Six photographs about the puzzling experience of ME/CFS

Offering these as a flavour of my photo project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome.

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.

Unrefreshed sleep

An irony of ME/CFS aka ‘Chronic Fatigue Syndrome’ is not sleeping well, with lots of turning over through the night in spite of impeccable sleep routines and aids. This bedsheet is stained from not having the energy to shower more than once every three to five days. In 18 months I’d worn through the material, from sleeping restlessly.

Brain fog

Cognitive impairment. Irritability. Forgetfulness. Getting words the way wrong round.

Energy demands

Always feeling like there's never enough energy for the minor task in hand. Or thinking it's within range, and then falling apart 48 hours later.

Malingering virus suspected

I had glandular fever (Epstein Barr Virua aka EBV) aged 15 and wasn't really ever quite the same since, always feeling a bit sluggish. Plus: Chicken Pox. German measles. Singles, twice. HPV. Flu's. Viruses. Many colds. Covid, three times. It's possible that one or more of these now latent viruses are activating the immune system, which is an energy draw and which might be hampering or damaging the mitochondria. I've to do work on testing and supporting the immune system back to full health, working with functional medicine and nutritional approaches.

Metabolic dysfunction

I regularly feel hypoglycemic, and especially if I've overdone it - even if my blood sugars show as being relatively stable. I've found a lowish-carb diet helps stabalise my energy. If I miss a meal by an hour I soon feel it, but an apple or half a banana usually gets me through the effort of preparing a simple meal.

Educated guesswork

I'm slowly reducing these as I hone in my understanding and test results rule in/out what's helpful, but I'm still reluctant to let go of some that are reputedly so helpful for others. Looking forward to the times when I'm taking just a few core supplements to cover the bases. Costs c.£200 each month meanwhile, to be paid from a pittance of benefits, with no nutritional or supplementation support from our NHS.

You can view the work in progress project at; https://glass.photo/andrewgifford. (Click into one image and then use the arrows in the top right to expand to full screen :)

Millions missing

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.

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!