Struck down by ME and vaccinations – Uplifted by poetry and card-making

A lover of the outdoors, and a literature and languages graduate, Ffion’s ME deteriorated after a COVID vaccination.

Her life was already restricted, though she had found a release through writing poetry (often humorous) and making cards, and was occasionally able to enjoy short walks in nature. The vaccination changed that. Now, she says:

Must lie down, darkened room, eye-mask on, in silence, 5-7 hours a day. 

Generally spend, daily, 15-17 hours lying in/on bed.

When upright for c. 1hr in house, very limited – able to:

• make 1-2 cards a day, on a good day
• type a couple of emails
• write and upload a poem
• listen to a little Audible (unable to read book etc. since 2010 and unable to hold face-to-face or phone conversation for more than a couple of minutes…. Oh, the irony…. and me a literature and languages graduate….)
• watch c. 20-30 mins of “easy” TV in evening – nothing fast-paced, active, bright/flashy etc and no more French films for me, nor sub-titled ones, etc. etc.

To sum up

When able to do so very little
It’s a struggle …
To fill in an endless day …

“Activity” must be
Meticulously measured …

Added?

No, divided ….

Then …

Taken away …

Ffion’s husband manages her poetry blog. Each poem is accompanied by a carefully chosen image and she has noted the important role he plays in her life and creativity.

Thank you to the good man in my life

Lying, quietly, in comfy bed …
Room bathed in monochromatic light …

Gradually, the world awakens …
Advancing daylight vanquishes night.

And then appears …. The Good Man …
His presence a balm to my burnt-out brain …

“How was your night?”, he gently asks …
And day – if not Life – begins again …

Ffion marks Severe ME Day 2023 with: A life in a day

Read more poems by Ffion: ffionoriginalpoems

See Ffion’s cards on Facebook: Ffion.cards.1

Caring for people with ME/CFS who are bedbound

Emerge Australia has put together a guide to help you care for a loved one who is severely impacted by ME/CFS and has become bedbound

People who are mostly or entirely bedbound by ME/CFS may need support with:

ME/CFS leaves some people so unwell that they are not able to manage any activities of daily living without help.

They are often extremely sensitive to light, sound and touch, and need total care.

They may not be able to speak or may only be able to speak in short bursts.

While some of the information in the guide is tailored for people living in Australia it also covers the range of symptoms and disabilities and the need to work with healthcare professionals and look out for changes to the bedbound person’s condition.

Also included are practical tips for helping with activities of daily living:

• bathing
• toileting
• tooth brushing
• dressing
• eating and drinking
• moving and better positioning to protect the person from pressure ulcers, contractures, skin and joint irritation, and poor alignment
• mobility and transfers to protect both the carer and person with ME/CFS from injury due to lifting and turning
• setting up the room to protect the person from unnecessary physical, cognitive or emotional exertion
• Support and socialising

Read the 8 page guide online

Download the pdf

Video: Very severe ME/CFS, from Broken Battery

Very Severe ME/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.

Patients are in bed all day and dependent on care.

They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].

Most doctors have had no formal training; many think it’s psychological and some don’t even believe in the condition. Misdiagnosis and inappropriate management are common.

Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3].

The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].

1. https://www.mdpi.com/2227-9032/9/4/459
2. https://archive.li/2023.02.28-221814/…
3. https://www.codastory.com/waronscienc…
4. https://meassociation.org.uk/wp-conte…

#EndMalnutritionInME    #SevereMEday

Watch more videos from Broken Battery

Standing strong – Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline

WAMES has joined 56 leaders in the ME community from across the globe in writing a rapid response to the July 2023 article titled “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.”

The World ME Alliance is disappointed that the Journal of Neurology and Neurosurgery and Psychiatry (JNNP) has not published our rapid response to this article.

Instead, this article remains published, while rapid responses rebutting it are not. This is a major disservice to people with ME everywhere. Readers of this article, and especially professionals who support and care for people with ME, must understand the strength of opposition to these author’s controversial assertions.

this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME

In our rapid response, authors from over 24 countries firmly endorse NICE’s statement that they “reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients”. And call for “progress beyond outdated and repetitive arguments.”

While awaiting NICE’s forthcoming detailed response, this rapid response underscores the international ME community’s unity in support of the 2021 NICE guideline on “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.” By shedding light on the extensive backing of the ME community and underscoring the imperative for ongoing research, this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME.

Read the unpublished letter

#EndMalnutritionInME – Severe ME day

August 8th marks an important day for the global ME (Myalgic Encephalomyelitis) community as we come together to observe Severe ME Day.

This year, the focus is on #EndMalnutritionInME, shedding light on the often overlooked and challenging aspect of accessing appropriate dietary support for individuals battling severe ME.

Severe ME affects roughly 25% of people with ME. For those affected, seemingly simple tasks become insurmountable challenges, making daily life a constant struggle. One lesser-known but crucial issue that significantly impacts the lives of individuals with severe ME is malnutrition.

Malnutrition can occur in people with severe and very severe ME for a number of reasons. In people with very severe ME one of the major causes is sheer debility; the person is just too debilitated to eat and drink sufficiently. Other causes include difficulty swallowing and gastrointestinal problems.

The Battle Against Malnutrition:

#EndMalnutritionInME serves as a rallying cry to address the distressing reality faced by some individuals with severe ME – the difficulty of accessing appropriate dietary support including tube feeding. At its worst, this has led to the death of some individuals.

To aid in spreading awareness about severe ME and #EndMalnutritionInME, our Alliance has created eight eye-catching graphics, each focussing on a different aspect of life that severe ME limits. These graphics are available for free download and use, and we encourage individuals, organisations, and communities to share their message and raise awareness on social media platforms and other channels on August 8th.

Find out more

Gallery of images in Welsh

Gallery of images in English