ME Blogs

The Fear In My Doctor’s Eyes

Anil

  By Anil van der Zee in CAPTURE.DANCE.WORDS.   The honeymoon. Before becoming ill, my relationship with the medical world was always great. It was pretty much straightforward really. During my profession as a dancer, injuries were of course always of a concern. I had to be in close contact with doctors, physiotherapists, massage therapists, […]

Emily, My Inspiration

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    From the  ‘A Life Hidden’ Blog.   Seven years ago today, my first article in The Daily Telegraph was published. It told of the suffering and death of my dear friend Emily Collingridge. Emily had been passionate about raising awareness of ME, and I couldn’t bear the thought of her death passing unnoticed by the […]

Caution And Controversy

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  By Anna Redshaw in her M.E. Myself And I Blog.   This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. […]

Why Certain Illnesses Remain Mysterious

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  By Sarah Ramsay in The Paris Review.   When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable […]

Beyond Tired : ME/CFS Life – Awareness Week 2020

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From the Invisibly ME Blog.   The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit […]

‘Leave No One Behind’ – ME Awareness Day 2020

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  There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease. Thoughts on ME & Covid-19 by Corina Duyn. For the past seven weeks – 55 days – life as we knew it has changed forever. A virus which nobody can see, but […]

ME And The Pain Of Looking Forward

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By talmandan in The Low Side Blog.   I’ve spent the last six weeks with some strange form of writer’s block. I don’t know if it has just coincidentally been parallel to a global pandemic, or due to some debilitating levels of ME related exhaustion, or a combination of both. I’ve watched while chronic illness bloggers […]

What Have Tea And Cake Got To Do With M.E. ?

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    By Anna Redshaw in her M.E. Myself and I Blog.   In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t […]

Endometriosis & ME

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  By Vivien Steeles in M.E. Support.   My Experience I’m in contact with many people with M.E., both by e-mail and letter, and it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching and lecturing in […]

Volunteering From Home – Flexible, Inclusive Opportunities For All

Life of Pippa

From The Life of Pippa Blog.   I firmly believe that there’s no such thing as too many acts of kindness. In light of our current circumstances, it’s been so heartwarming to see that a decent proportion of the general public are shining bright and coming forward to volunteer, doing all they can to help […]

Life In Lockdown: What Matters When All Is Lost

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  By Naomi Whittingham in A Life Hidden.   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 […]

The Distant Corona Connection

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  By Anil van der Zee.   Adjusting. We are in a crisis! A pandemic! The coronavirus is spreading. It’s frightening. Will I be infected? My friends? And most importantly how will it affect us? The uncertainty of the unknown is probably the most unsettling of the whole situation. As we are dealing with a […]

A Letter To My Nearest And Dearest

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  From the Mummying and M.E. Blog.   To my wonderful friends and family (you know who you are), I want to attempt to say thank you to you all but also sorry at the same time by writing this open letter. I’m not entirely sure I’ll manage but here goes. For those who haven’t […]

M.E Myths Debunked: Part 1

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  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

30 Years Beyond Comprehension

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  From A Life Hidden.   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 […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog.   As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, […]

Beneath The Surface, Part 3

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    From A Life Hidden.   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 […]

Inside The Isolation Caused By ME/CFS Hypersensitivity

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    By Jo Moss in A Journey Through The Fog.   I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of […]

Aids And Equipment For Managing Fatigue

Life of Pippa

        By Pippa, in Life of Pippa.   [AD] This piece is sponsored by CareCo Ltd and features affiliate links. More information can be found at the bottom of this post! Something that comes up a lot in conversation is how I negotiate living independently whilst dealing with long-term chronic fatigue. And whilst that’s […]

My Story

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    From Mummying and M.E.   I used to be healthy (ish!) Full of energy. I used to think nothing of working a 10+ hour day, 5 days a week, going to a 2-hour rehearsal twice a week after work, and most other nights going for a drink or 2 at the local. Weekends were spent […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

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  From the Not Just Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, chatting […]

4 Downsides (And Bright Sides) Of My Illness

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      By Siobhain Simper in The Mighty.   As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]

Ten Ways To Prove That Chronic Fatigue Syndrome (ME/CFS) Is A Serious Illness

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      By Cort Johnson in Health Rising. Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to […]

Dietary Advice For Bedbound ME/CFS Patients: Protein

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      By Dr Courtney Craig.   Dietary protein requirements for the average person are about 0.8g/per kg body weight/day per the U.S. and European standards. That equates to about 67-114g per day for men, and between 59-102g per day for women. Adequate dietary protein allows for: Repair of tissues and cellular proteins: a […]

Words From A Hidden World

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    By Naomi Whittingham.   Welcome  to my blog.  The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time.  I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control.  (The downside is […]

Post Thirty Four. Planning For A Future With Severe ME.

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  By Pheobe Boag in Puffins, Penguins and Me.   It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]

Please Stop Trying To ‘Fix’ My ME/CFS

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  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

Practical Solutions To Everyday Spoonie Problems

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  By Jo Moss in A Journey Through The Fog.   Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]

How My Life Has Changed Since I Developed ME/CFS

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  By Lisa Alioto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]

ME/CFS Patients Worldwide Face Scepticism And Ignorance From Doctors

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  By Jo Moss in A Journey through the fog.   I would like to take the opportunity, for ME awareness month, to talk about the problems ME/CFS patients like myself face getting a diagnosis, and also the general ignorance surrounding ME/CFS within the medical profession. I know not all doctors are bad, but sadly […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

7 Things All Chronically Ill Dancers Can Relate To

Pippa

  From Life Of Pippa.   Since being diagnosed with my long-term condition, I’ve realised that there’s a huge correlation between professional dance and chronic illness. For me, it was ballet. I trained intensively all throughout my childhood and early teens and was lucky to enjoy some ultimate highs and accomplishments, until (in a nutshell) […]

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