Action for M.E
Over the past couple of years I have done quite a bit with Action for M.E.
M.E is a neuro-immune disorder though it affects many different parts of the body. In the UK 250,000 children and adults are affected; 1 in 4 of those like myself are severely affected. Despite having severe M.E I do what I can to help raise awareness of the condition and bring it into the spotlight.
- 'M.E and Me' - A video for M.E Awareness Month 2019
- 'Daisy, Naomi and Simon: Take every day as it comes' - A video for M.E Awareness Month 2020
With the support of Action for M.E I've also written an article for the Royal College of Nursing on 'How nurses can support patients with M.E'In Action for M.E's December 2020 magazine I wrote another article about how I've found ways to still be able to do the things I enjoy despite having severe M.E. I mainly touch upon how I manage to blog and write letters as well as the subject of friendships when you have M.E.
➜ If you would would like to read this article email me at firstname.lastname@example.org
- Severe M.E Awareness Day 2021 - posts on Instagram, Twitter and Facebook sharing a short post on my experience of living with Severe M.E
The M.E Association
As well as working with Action for M.E I have also written some articles that are up on the M.E Association's website. I have also been featured in their podcast 'The M.E Show'.
- 'The ME Show Special – The Real M.E.' - M.E Awareness Moth 2019 (Link is to the podcast and it includes a transcript of the podcast too)
- 'ME is a cruel illness and whether we have it mild or severe, we all still suffer' - For M.E Awareness Month 2020
- 'These lost years have been a grieving process; a loss of a past life that seems so far away' - For M.E Awareness Month 2020
- Severe M.E and Me - blog post on the M.E Association's website for Severe M.E Awareness Day 2021
EDS (&HSD) Support UK
- 'Living With Pain' - For Pain Awareness Month, September 2020
Chronic Warrior Collective
I'm an ambassador for the Chronic Warrior Collective. The CWC support those with chronic illnesses and disabilities all over the world including care givers and siblings.
I've also joined their Extra Card Crew sending mail to those have a tough time and I'm now on their Artist Team designing cards for them to use which they get funding to print to use by members of the CWC.
- We Need to Talk About the Emotional Toll of Being Chronically Ill
- We Need Diverse Disability Representation in Retail Stores
- Why We Need More Awareness About Changing Places Toilets
- We Need Better Food Allergy Labelling
- The Loneliness I Feel as Someone With Chronic Illness
- How Banning Plastic Straws Affects Disabled People
- Learning to Set Priorities in My Life With Chronic Illness
- When I Feel Like My Chronic Illness Has Become My Identity
- Why I Don't Call Myself a Chronic Illness 'Warrior'
- I'm Not 'Wheelchair-Bound'
- What the F in FOMO Stands for When You Have Debilitating Chronic Illness
- Staying Hopeful Amid Life With Severe Myalgic Encephalomyelitis
- To Those Who Think My Chronic Fatigue Is a 'Gift'
- How Hypermobility Specrum Disorder Makes Me a Different Kind of Zebra
- The Part of My hEDS That's Really Hard to Talk About
Other things I've participated in
Speaking on ITV Calendar about the changed to the Blue Badge (disabled parking permit) scheme.
'I've spent years in lockdown' - this was an article that I wrote for our local newspaper about how for me the lockdowns we have all been experiencing due to the coronavirus is experienced for much longer periods by those who are housebound due to chronic illness. I write about living with M.E and the challenges that I face as a result of the illness. There are some inaccuracies like referring to M.E as a 'chronic fatigue illness', but M.E extends far beyond just experiencing fatigue.