Awareness work

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

"Living with M.E. can often force people to become experts at self-care, careful planning, energy-management, learning to say no, living with uncertainty, coping with isolation… the list goes on.

We want celebrate this strength, insight and resilience. So we asked three people with M.E. to share their self-care advice and experience with the wider world." - Action for M.E.

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 hello@agirlcallednaomi.com

• 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 M.E. Show Special – The Real M.E.' - M.E. Awareness Month 2019 (Link is to the podcast and it includes a transcript of the podcast too)
• 'M.E. 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
  

 I’m also an M.E. Champion Blogger for the M.E. Association. This is in recognition of the work I do with my blog to write about M.E. such as living with this illness, lifestyle, coping advice, awareness advocacy and activism. 

EDS Support UK

• 'Living With Pain' - For Pain Awareness Month, September 2020

Chronic Warrior Collective & Cards2Warriors

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 the Cards2Warriors Extra Card Crew sending mail to those have a tough time and I'm now one of their Artists designing cards for them to use.

British Association of Social Workers 

Together with Action for M.E. and Louise a journalist who works at the BASW we put together some new guidelines for social on how to work with people with M.E./CFS. My part in this project was to be a case study and to offer my suggestions to social workers on how they can best support and meet the needs of those with M.E./CFS. It was an amazing opportunity to be asked to take part in having lived experience of needing care and using social care services.

You can read the online article here.

This the article the the BASW’s magazine

Scope

 I’m now working with the disability charity Scope as one of their Storytellers. This will involve working with the charity on their campaigns, media work both internally with Scope but also with other media organisations such as television, radio, newspapers, magazines etc for interviews. 

• Article for The Metro

These are posts that have been published on The Mighty

Disability/Chronic Illness posts

• 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

M.E. posts

• Staying Hopeful Amid Life With Severe Myalgic Encephalomyelitis
• To Those Who Think My Chronic Fatigue Is a 'Gift'

HSD/EDS posts

• How Hypermobility Specrum Disorder Makes Me a Different Kind of Zebra
• The Part of My hEDS That's Really Hard to Talk About

FND posts

• When Functional Neurological Disorder Plays With My Emotions 
• What People Need to Understand About Non-Epileptic Seizures 

Other oppertunities I've participated in

• Speaking on ITV Calendar about the changed to the Blue Badge (disabled parking permit) scheme.

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