Many of you may

have heard of M.E…

 but it is less well known that 25% suffer so severely they are bed bound, suffer constant pain, paralysis, sensitivity to light and noise so severe they lie in dark rooms with no sounds, skin sometimes so painful the smallest touch can hurt. These are just a few of the myriad of horrific symptoms that Merryn en- dured. Merryn was a true fighter and an inspiration; her palliative care team said they had never seen such suffering but such grace and bravery too. Merryn always felt passionately about wanting to keep a photographic record of her illness and the ways it affected her and other sufferers to combat the many misunderstandings that abound about it. She was a girl who loved people, she was a hugger and a helper, always laugh- ing, singing and dancing about, a member of a local drama school who wanted to study performing arts and work in the theatre. Severe ME robbed her of all this in in- crements as she lost the ability to walk, then sit up even at a small incline, be- coming housebound then bed bound. Severe photosensitivity meant her cur- tains were always drawn and she often had dark glasses on as well, hyperacusis (noise sensitivity) and movement sensi- tivity (of herself and others around her) meant she was unable to tolerate much of any kind of social interaction without having myoclonic seizures and becom- ing confused and disorientated. Touch hypersensitivity meant my huggy girl could no longer give or receive cud- dles - even the weight of a sheet could be agonising. Then the loss of speech, swallow and intestinal failure along with all the pleasure eating brings. And pain, pain beyond measure or imagining...and yet through all this hope, enormous strength of spirit and finding a whole new online world of chronic illness sufferers like herself who battled daily but supported each other amazingly - the collateral beauty. These pictures show the fighter, warrior and beautiful spirit that she was #bemoremerryn

Severe ME is one of the

conditions that Merryn lived

with and ultimately died from

and sadly she is not alone. It is

a truly invisible illness .