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:
“Before I got ME, I had just graduated from my MSc and was applying to PhDs, as well as seeking funding to possibly self-fund my own research.
“I was in a long-distance relationship, and I had friends that I saw regularly and went out with often. I enjoyed exercise and loved taking my dog out to explore places near and far.
“In less than a year my ME hit. It caused my friendships to dissolve or breakdown. My relationship ended. I couldn't work, let alone undertake a scientific PhD with a lot of field work in isolated locations.
“It left me bedridden 90% or more of the time. Unable to prepare food for myself or shower (I had previously showered once a day in temperate weather and 2-3 times a day during heatwaves).
“I had to order in almost every night, and as a vegan due to allergies and intolerances I had little options. This meant that I gained weight. The weight-gain combined with being unable to get out of bed, never mind exercise, caused me to develop Type-2 diabetes within a 6-month period.
“Ordering in all the time and being single and unable to work caused me to go into a lot of debt on my credit card. The entire situation made my depression and anxiety worse. It has taken away my independence and freedom. I am rarely safe to drive, so I regularly rely on my elderly parents to take me places like to a doctor’s appointment. This increases my anxiety because without them I'd be stuck in the house.
“I'm lonely, miserable, bored, constantly exhausted, and always in pain. And my brain no longer functions the way it used to. I doubt I could pass a year 7 test in my field, let alone gain multiple degrees in it. I grieve a lot for the life I have lost.”
Anonymous:
“I’m 19 years old, I was forced to leave school at 16. Secondary school was so traumatic for me. For 9 years I have been disbelieved by most of the medical professionals in my care. It got so bad I wanted to take my own life.
“I had planned what to do but I just couldn’t do it to my mum & dad. I just wanted out of the tournament! I am housebound now and only leave to go to the emergency department or very important medical appointments.
“I have shaved my hair all off, so I can shower more than once a week – but still with help. I’m always in too much pain or I feel too sick to eat or enjoy food. I miss talking to my friends & laughing like we used to.
“I get so tired that it’s exhausting to talk, process, remember and then answer during a conversation. I just avoid it, as the Post Exertional Malaise (PEM) after is too much.
“I want a day when my family doesn’t have to fight for me to be listened to! I want to feel like my life matters!
“I’m so lucky to have the most supportive parents who have never and will never give up on me. Why is it such a struggle even now? I can’t do anything for myself, it’s like I’m trapped in a body that doesn’t work.
“I want to be positive and make the most out of my life, but I wouldn’t wish it on anyone!”
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