Kara Jane is a singer with a voice that touches the heart. Its sweet, clear tone conveys both vulnerability and strength, creating a heartfelt connection with her audience. There is a melancholic quality too, hinting at a deeper pain: Kara is seriously ill with ME, with a life expectancy that could be very limited. … More This Is Love: An Appeal to Musicians
On the eve of 2020, in New Year Reflections, I looked back on a difficult 2019 and asked: “What might I be called upon to face this year?” I could not have imagined what lay ahead – not only for me, but for the entire world. Living through the coronavirus pandemic is both a global … More Life in Lockdown: What Matters When All Is Lost
Life has been painful, of late. Circumstances have brought a profound awareness of my limitations. The ongoing serious illness of someone I love. The approaching first anniversary of my father’s death; the fact that I was too ill to visit the intensive care unit where he spent the final month of his life. … More When Coping Is Too Much
Today is the 30th anniversary of the day I became ill. How surreal those words sound, even after three decades spent adjusting to them. My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as a healthy young girl, thirty hours … More 30 Years Beyond Comprehension
New Year is a strange time. For most of my life, since becoming ill as a child, I have been unable to equate it with celebration. For many years the arrival of January was reason to mourn another year destroyed by illness. Nowadays I tread a calmer path, but a wary one nonetheless. What might … More New Year Reflections
A Life Hidden is a year old this week. This milestone is an opportunity to look back on the year that has passed, and also to thank everyone who has supported my writing during this time. On a personal level it has been a difficult year. Shortly after launching the site, I suffered a … More A Life Hidden – the First Year
The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. The BACME guidelines support the biopsychosocial (BPS) model of ME, which holds that deconditioning and the … More Beneath the Surface, Part 3
In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns. Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME. … More Beneath the Surface, Part 2
The first of a three part series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. As this is a lengthy piece and will likely be a challenge for those with severe ME, … More Beneath the Surface, Part 1
The following piece was written by Emily Collingridge in 2010 and 2011, and circulated on social media around that time. Emily died in hospital less than a year after completing it. Today I share her writing to mark Severe ME Awareness Day, on 8th August. Nearly 10 years after Emily wrote these powerful words, the situation … More Severe M.E. Awareness Day: Emily’s Appeal
