ME Awareness:
What’s the difference between Covid-19 and ME?
It is hard not to see many glaring differences between the attitudes to the illness I have struggled with for years and the latest public health threat.
Covid-19 is generally accepted to exist, considered to be serious, and widely discussed and researched.
ME hasn’t been widely accepted in the medical world or by the general public, even by our friends and families sometimes. Understanding is patchy and research underfunded.
Covid-19 can be avoided by self-isolation and shielding. Or by wearing personal protection, using lots of soap & water & sanitiser and avoid touching your face.
ME comes uninvited, without warning, though it could have been avoided for some if the medical profession had given advice not to push themselves following a virus.
Covid-19 – the population is told we’re “in it together” for the good of all.
ME people, along with people with other disabilities, often feel on the margins of society, isolated and not seen.
Covid-19 treatment advice is fairly clear and consistent. Plan A: self-isolate with fluids, rest; take pain relievers. Or Plan B: call 111 if it gets worse.
ME affects people in different ways and fluctuates, so our coping strategy changes. A, B, C – are there enough letters in the alphabet to describe all the things people try, hoping to feel better, to avoid a relapse? So called experts can’t agree. Exercise – don’t exercise. Resist unhelpful illness beliefs – accept and adapt. Medication – no medication.
Covid-19 lockdown support has grown when needs were made known: priority delivery slots, food parcels; prescription deliveries; furlough; mental health check-in calls; help from banks, insurers, mortgage companies etc. etc.
ME – being housebound with ME does not trigger the same concern and practical support.
Covid-19 – everyone is encouraged to stay in touch with those self isolating and in lockdown, and to keep an eye on others’ physical and mental health, as well as their own.
ME – it has been hard to make people understand how difficult it can be to manage a complex health condition and how isolated and invisible we can be for months or years on end.
Covid-19 restrictions will come to an end and life will return to normal.
ME is for life, for most of us. There will be no return to normalcy, just constantly learning to adapt to the limitations of our bodies and brains.
Covid-19 can kill if given the chance.
ME rarely kills, but can be a living hell.
It is reassuring to see how understanding, proactive and caring our society can be. I hope these positive attitudes and support structures can be absorbed into our future, and become part of the ‘new normal’ for people with ME on a long term basis.
PF, Wales
Every day requires time spent lying down, experiencing pain in my muscles and joints and sensitivity to noise, smells and light.
In November I was rushed into hospital with what was diagnosed as a mini stroke. I was kept in for nearly a month undergoing endless tests, a lumbar puncture and multiple scans. In the end by a process of elimination they diagnosed ME. It was useful having an early diagnosis but they wanted to keep me in hospital because I was so weak. In the end I had to beg to go home. Hospitals are noisy and being in a stroke ward the lights were on all night and there was noise as the other patients were being attended. The lights hurt my eyes and I was very sensitive to sound.
My daughter has had ME for the last 27 years, since she was 11 years old when she suffered a bad attack of glandular fever. She was a few weeks into a public school, where she had gained a place on merit. She was extremely bright and enthusiastic, playing cello in a junior orchestra and she excelled at sport.
Staying at home in self isolation is nothing new for her. She has her bedroom blind closed most of the time. Her body clock is reversed and she is asleep during the day, despite several attempts to change this. She has pain in her muscles, is light and sound sensitive, and suffers with brain-fog and extreme unnatural exhaustion. She is only just able to go to the bathroom herself. She is an immensely independent and private person, and sometimes it is a struggle. Often a conversation is too much for her and she shuns any company most of the time.
May 12 was chosen as it coincided with the birth date of 
ibbons are used by many groups as symbols of support or awareness. The ribbon colour used for ME/CFS is blue, for Fibromyalgia it is purple and for MCS it is green. In all cases, the ribbon colour is not unique to the cause but is used for other causes as well.
You have always been there
Now you stand back a little as walks become longer,
We feel like sitting ducks, just waiting to see if COVID-19 will strike our nursing home. If COVID-19 does hit us – how many of us will die? Surely our nurses and carers won’t abandon us, or will they?…
Not knowing what has happened to you.
