Thread by @Birdtableseed

I got ME after flu and within a few months became bedridden in a blacked out silent room ,fed liquid food through a straw and also lost speech. Doctor told me some symptoms were similar to stroke and brain injury 1 of 10
#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Extreme ME/CFS affects the whole family especially when intense pain , sensitivity to noise , light , touch are present. These are now medically recognised as symptoms. Everything within the house changes for everyone 2 of 10

After the worst year passed I was assessed as needing 24/7 care and received carers daily as I was better able to tolerate visitors in our home. When things improved we managed by ourselves 3 of 10

My ME began extremely severe then became less severe then became moderate over the years where I could walk around our home but needed a stairlift and wheelchair outdoors 4 of 10

I relapsed some years ago back to severe now mostly bedridden with electric wheelchair but thankfully not back to extreme.
We moved the bed to our lounge beside our patio doors to look at our garden 5 of 10

My husband has been caring for me for years . After latest relapse we asked for care support but found things had changed in our area and were told ME patients did not qualify for social care 6 of 10

Our wonderful GP retired years ago and the help and support he provided went too. Like many families with ME/CFS in the UK we were left without medical care. NICE guidelines changed last year to instruct better care for ME patients 7 of 10

We are still waiting for the new NICE medical guidelines to be implemented.Many families with ME/CFS are still currently left without medical care and social care, 8 of 10

nice.org.uk/guidance/ng206

My husbands health was eventually affected by the strain of caring and resulted in a medical emergency which he was lucky to survive. He had to stop work and medically retire. ME/CFS affects more than the person who has it but affects loved ones too 9 of 10

The cost to families is huge. Our experience has been hard but other families have been through worse. Everyday we check developments in NICE guideline implementation for ME/CFS and biomedical research hoping for change 10 of 10

Extreme can ME/CFS affect the whole family especially when intense pain , sensitivity to noise , light , touch are present. These are now medically recognised as symptoms. Everything within the house changes for everyone 2 of 10