The ME Association is asking everyone to pause for a moment at midday on ME Awareness Day (12 May), and join us throughout the afternoon to remember the people from this community who have sadly died, and to reflect on the effect ME/CFS has had on you, your family, friends and wider society.
We also want to talk about what it is that keeps you going, that keeps you fighting, and about what you think needs to happen to provide real hope to everyone with this debilitating neurological disease. Where do you find hope when life can seem so bleak at times?
Dr Charles Shepherd, Hon. Medical Adviser, ME Association has previously said:
“M.E. remains a largely hidden disease. There is a lack of medical care and no effective treatment – and yet it can lead to greater functional impairment than multiple sclerosis or cancer.”
“The most severe sufferers are often the most hidden. A lot of people are forced to give up and they can’t continue the fight to raise awareness and try and improve the situation. There’s a higher risk of suicide within the ME/CFS community.”
“People newly diagnosed or who have had no experience of ME/CFS find it hard to understand how something as serious as this disease and that affects an estimated 265,000 in the UK alone, can leave sufferers so neglected.
“We desperately need greater recognition and acceptance, improved medical care and more biomedical research to give people a fighting chance of reclaiming their health and once again becoming productive members of society.”
People have sadly passed away because of this disease or because they have found the constant struggle with symptoms, the devastating impact on previous lifestyles, the battle with healthcare providers, lack of effective treatments or cure, too much to bear. Every one of these lives is one too many and we must seek change.
ME/CFS is an incredibly hard disease to live with and the second hardest thing is watching a loved one suffering and we understand. We urge you – if you are feeling upset, distressed or are having suicidal thoughts – to please reach out for support by phoning ME Connect and/or the Samaritans.
We have a wonderfully supportive online community who are happy to share their experiences in the hope it will help others. Membership of the ME Association also means you will receive ME Essential magazine which is another good way of staying in touch and up-to-date. Please don’t think you are alone as there are a great many others with ME/CFS who do understand, and we can all support each other.
The ME Association will be working hard to start a dialogue with the NHS to improve healthcare for people with ME/CFS in the UK. We all hope that Long Covid research will also shine a light on ME/CFS and that the new NICE ME/CFS Clinical Guideline will bring positive change for people with the condition in the UK. We hope this will help to change many healthcare professionals understanding of the condition and lead to a better healthcare for all.
If you or the person you care for is struggling with low mood or depression please reach out. We’re here for you and for any other matter that relates to living with ME/CFS.
ME Connect is staffed by a fully trained and supervised team of volunteers – most of whom have personal experience of the condition.
0344 576 5326
365 days a year
If you need someone to talk to urgently due to distressing thoughts or because you are feeling like you may act upon suicidal thoughts, please phone the Samaritans.
Calls are free and available 24 hours a day, 365 days a year.
Phone: 116 123