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myalgicencephalomyelitiscfstom · 18 hours

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ME Research UK

This week we are raising awareness about the debilitating symptoms of ME/CFS. The experience of cognitive dysfunction cannot be equated to the occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather cognitive dysfunction is a complex and distressing symptom. The CDC states “Most people with ME/CFS have trouble thinking quickly, remembering things, and paying attention to details. Patients often say they have “brain fog” to describe this problem because they feel “stuck in a fog” and not able to think clearly.”

Read more about cognitive dysfunction and the brain in ME/CFS:

#MEAwareness #brainfog #MECFS #pwME #cognitivedysfunction

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myalgicencephalomyelitiscfstom · 22 hours

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ME Research UK

This week we are raising awareness about the debilitating symptoms of ME/CFS. As “fatigue” is such a widely used word, healthy individuals may mistakenly equate their own experience with the reality of fatigue in ME/CFS. Fatigue in ME/CFS is not just tiredness, it is a persistent symptom that is not adequately relieved by rest and significantly impacts activities of daily living. Fatigue, in addition to other symptoms, can be significantly worsened through post-exertional malaise (PEM) – see yesterday’s post.

A physical therapist with ME/CFS describes her personal experience of fatigue - “The most severe symptom that I have experienced daily has been unrelenting exhaustion. I often describe it as having a battery that is at a maximum of 10% full, draining quickly. Once the battery is drained, I cannot charge it.” Read full account: https://bit.ly/3WT7F7B

Read more about an ME Research UK-funded study which explored fatigue and PEM in relation to mitochondrial dysfunction:

#MEAwareness #MECFS #Myalgicencephalomyelitis #pwME #fatigue

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myalgicencephalomyelitiscfstom · 2 days

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ME Research UK

We are raising awareness about the debilitating symptoms of ME/CFS. Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is the worsening of symptoms (and potential appearance of new symptoms) following minimal physical or mental exertion. It typically occurs 24 – 72 hours following the triggering event but may occur sooner. PEM can significantly reduce the level of activity/functioning of an individual with ME/CFS, and can last for several days, weeks, or longer.

Read more about the experience of PEM: https://bit.ly/expPEM2

Watch the Bateman Horne Center YouTube series on PEM: https://bit.ly/3UTMkJC

#MEAwareness #MECFS #Myalgicencephalomyelitis #postexertionalmalaise #PEM

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myalgicencephalomyelitiscfstom · 2 days

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I'm making a film!! :D

Hello, My name is Jamie, and I am so excited to announce my animated short film 'M.E, Myself and I', which is currently in production! As it is International ME Awareness week, I thought it would be the perfect time to announce this project to the world, and start to share its production with you all.

The film focuses on our main character 'MJ' as they live their life, and come to terms with their new diagnosis, and how to find joy in the world despite it. This film has been a concept of mine that I have had for many years, and is a story that is close to my heart, as I was diagnosed with M.E. in early 2017. I have previously worked with various studios in the North of England, and have completed work for the BBC, but this project was always on the back of my mind since then! It will be an entirely paper-based animation, like the animation shown below, and will then be hand colour with alcohol markers, mirroring the previous personal projects I have done in watercolour.

Our main character MJ ages throughout the film, and so the design reflect them growing up, aging and adapting as they adjust to using different mobility aids and travelling the world. Here is the concept art we have for our character at various ages throughout the film, as well as an animation test for the character.

I will be updating this blog regularly as production continues, sharing where we are up to and anything exciting that happens along the way.

If you would like to help support the production of the film, we have a Kofi, which will go towards supplies and sound design, and also keeping me hydrated! :D Please see the links below for my Kofi, and my Instagram where I will also be posting updates if you would like to see things there! I leave you with this little piece of concept art for one shot of the film, as well as some storyboard frames to give you a little insight into the story of the film.

Thank you for reading! \o/ Kofi - https://ko-fi.com/jamieisanimating Instagram - www.instagram.com/jamimation

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myalgicencephalomyelitiscfstom · 4 days

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#chronic illness #spoonie #mecfs #long covid #Spoonielife

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myalgicencephalomyelitiscfstom · 5 days

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The slides are now available for the 5 Irish talks the Irish ME/CFS Association arranged for Dr Nigel Speight.

PDF file type:

link:

PowerPoint file type:

https://1drv.ms/p/s!AoHfldspRkWU1OQBZ1Y2ge7X5Fw23Q

Alternative:

#myalgic encephalomyelitis #mecfs #chronic fatigue syndrome #cfs #me/cfs

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myalgicencephalomyelitiscfstom · 12 days

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4.5 4.5 out of 5 stars 199 ratings

[I haven't read this book but hopefully the reviews at the link are informative]

The children of people with chronic illness and pain suffer quietly. "Why Does Mommy Hurt?" is a joyful, yet honest, portrayal of family life burdened with chronic illness. This is a delightful story told by a young boy learning to understand and cope with his mother's illness. The story creates natural opportunities for families to talk about both the symptoms of chronic illness, and how they affect family life. Even more importantly, the story puts power into the hands of the children. It also offers a helpful "Tips and Resources" section for parents! A portion of the proceeds benefits the National Fibromyalgia and Chronic Pain Association (NFMCPA). This book is appropriate for a wide-variety of illnesses associated with chronic pain, such as: Lupus, Lyme Disease, ME, CFS, Fibromyalgia, Arthritis, Multiple Sclerosis, Cancer, Depression, Autoimmune Disease, and many others.

#chronic illness #chronic pain #fibromyalgia #mecfs #spoonie

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myalgicencephalomyelitiscfstom · 16 days

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#chronic illness #spoonie #spoonies #chroniclife #ChronicallyIll

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myalgicencephalomyelitiscfstom · 20 days

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#chronic illness #mecfs #long covid #spoonie #chronic life

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myalgicencephalomyelitiscfstom · 21 days

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Latest Jarred Younger video:

"Detecting neuroinflammation with brain imaging" (Neuroinflammation, Pain, and Fatigue Lab at UAB)

youtube

For research paper can be read for free here:

#fibromyalgia #Fibro #fibrofog #FMS #FM #Youtube

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myalgicencephalomyelitiscfstom · 25 days

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#chronic illness #chronically ill #long term illnesses #long term illness #patient

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myalgicencephalomyelitiscfstom · 28 days

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Something I want able bodied people to understand is that I don't want a diagnosis cause I wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.

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myalgicencephalomyelitiscfstom · 29 days

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