People who are severely or very severely affected by ME/CFS often struggle to initiate let alone complete normal everyday activities because of the overwhelming intensity of their condition and the functional impairment it brings. This means family – if available – must become their lifeline providing daily care often in the absence of any support from social care services…
These are just a few of the stories and comments that we have chosen to feature on the website this week. We'd like all the brave warriors who are battling severe and very severe ME/CFS – and the wonderful people who care for them – to know that you are not alone in this fight.
There is a wealth of experience and support available in the patient and carer community, and the ME Association is doing all that it can to make health and social care and disability benefits more accessible to anyone in need.
We might not have an effective treatment yet, but we are committed to working with the NHS and social care services to implement the 2021 NICE Clinical Guideline's recommendations and with the Department of Health and Social Care and its' working groups, to improve research investment and healthcare provision as quickly as possible especially for the those who are the most affected and often the most neglected.
If you would like to share your story, whether it be about your current or recent experience of severe and very severe ME/CFS as a patient or as a carer, or perhaps as someone who has experienced improvement and can reflect on where they are now, then do please get in touch: Feedback@meassociation.org.uk
Anonymous:
“I was a (mostly) physically healthy 22-year-old, on leave of absence from medical school due to some mental health problems. I noticed I was feeling exhausted all the time, regardless of what I did, and that pushing through led to me feeling ill and even more exhausted the next day. I had in this time experienced some symptoms that I now recognise as being post-exertional malaise (PEM), mostly sore throats, waking up with ‘kaleidoscope' vision, tingling in my fingers, lips and toes.
“Despite this I was still able to do the things I used to for the most part – walking, shopping, socialising. Speaking to my GP was not helpful as I was told it was just anxiety and depression, despite having been mentally stable and well after months and never having experienced these symptoms before. I was told my visual problems and tingling were migraines, even though I have had migraines most of my life and never experienced these symptoms and despite the absence of pain.
“That was until I returned to university in 2021, a year after my symptoms started. I was worried about going back because of the fatigue, but I wanted to try as it was my last chance. I was waking up at 6.30am to leave for university, attending placements from 8am – 5pm, and studying until 7pm before going home.
“I managed to attend the first month, with my symptoms gradually worsening. I started getting stiff muscles, stiff joints, and pain in my legs, feet, shoulders and spine. I started needing increasing amounts of sleep, and if I slept less than 12 hours I would struggle to function throughout the day in any capacity.
“I would wake-up not only with visual problems and tingling but feeling extremely dizzy. I would feel like I was drunk – the world was spinning, and I couldn't walk without using the wall for support. I developed new types of headaches, in the top of my head and base of my skull.
“I started missing morning placements and I started leaving afternoon placements after two hours because I was feeling unsteady on my feet, with nausea, and pain. I was experiencing visual floaters, always in the same spot, and always when I didn't sleep at least 10 hours. I started noticing issues with concentration, having to read things at least twice before I was able to process what I read, and zoning out constantly during conversation. I started noticing memory problems, people would mention things that I'd said or done moments before, even short conversations I'd had that I wouldn't remember at all.
“This was all very scary, but because of my medical knowledge I knew where to look for possible answers. I knew due to the huge range of symptoms I was experiencing it had to be either neurological, hormonal, autoimmune, or a mixture of these. This is when I first discussed ME with my GP, and he made a referral to the ME team covering my area.
“My GP suggested I keep up with exercise, including cardio and strengthening exercises, take vitamins, and continue attending my studies. I received the same advice from student support at the university and was simply told to pace myself by occupational health who was completely dismissive of my situation (as if pacing were possible when I was expected to attend clinical placements and to study, sometimes doing night shifts or 12-hour shifts). Those who are familiar with ME know that this was terrible advice, and I'm convinced trying to push through symptoms as advised by my GP and staff at the medical school led to me becoming much worse.
“After little over a month, I knew I couldn't continue with my medical education. Life was hell, my symptoms never subsided and were only getting worse. I wasn't meeting the attendance conditions of my course. I was forced to leave; my health was too poor. It was like some cosmic joke. I was the best I had ever been mentally, well for the first time in my life, but my physical health had failed me.
“I resented my body for ruining my life. I was now housebound, mostly stuck on my sofa unable to do more than walk to the bathroom and shower once or twice a week. Even when I did shower, I needed to take breaks in the middle because it used too much energy. I could no longer cook; it was too exhausting and standing caused a lot of pain in my feet and legs.
“It was a living hell; my quality of life was almost non-existent. I couldn't even handle basic household tasks anymore, filling the dishwasher felt like I'd just walked up Snowdon. Eventually my partner and I had to move in with his parents as we both needed the extra support. I had to give up my hobbies or decrease the frequency that I partook in them. I used to love hiking, it was my escape, but now I can't walk even half a mile without being too exhausted to continue. I used to play board games every other night, now it is at most once a week due to the concentration required.
“Most of my friends and family keep asking if I had a job yet, and what my plans are to get back to my life back. As if I just have a condition that can be easily fixed with a pill. When I told a family member that I wasn't safe to drive they told me I just needed to build up my confidence.
“Countless times I’ve been told I just needed to start with small activities and build up to big activities, as if my energy levels will improve with perseverance. Hearing these things is painful, and makes me feel so guilty, like I'm not living up to society’s and to my loved one’s expectations. At first, I felt utterly useless, like I wasn't good enough, and my life was pointless.
“But I am now starting to accept my situation as it is, only doing what I can when I can. I use a wheelchair to get out and about, walking as much as I feel able without inducing PEM (even if this is only about 10-15 minutes), before my partner pushes me.
“Seeing people is always difficult, but I have learned that if I rest (lying down, eyes closed, doing nothing) for a couple hours before and after I can handle it without inducing PEM. I will soon be starting acceptance and commitment therapy to tackle my views and learn to cope with judgements from others, and I'm hoping this will help with my depression.
“I am hopeful that I might be able to return to part-time work helping people, but whether this is a pipe dream or not, I don't know. If I can return to work, I know it will be completely different. I will need lots of rest, adaptions, and the use of an electric wheelchair. I will almost certainly have to deal with misguided beliefs, judgements, and some degree of discrimination.
“ME has turned my life upside down. I have had to give up so much, and I don't know whether Pacing therapy will help me recover, or what my life will look like in the future. But I hope I am able to recover to some meaningful extent and do the things I enjoyed once more.”
Please note: The featured image used at the top of this blog is not of anyone who kindly provided their story or comment. It has been taken from the Real M.E. campaign which is enabling us to use representative images of people with ME/CFS rather than rely on stock images that are often unsuitable for the subject. If you'd like to learn more about the campaign or wish to submit your own photographs then please get in touch: Feedback@meassociation.org.uk