chronically resourced

#chronic illness research (there's also condition-specific tags like #fibromyalgia research, #covid research, and more coming soon)

#for the new spoonies

#get prepared resources (e.g. what to have in your hospital go-bag)

#housebound resources and #bedbound resources

#how to guides

#how to talk to your doctor

Masterlists: #chronic illness masterlists

#mobility aid resources

#printable resources

#video resource(s)

#book recommendations | #podcast recommendations | #app recommendations | #product recommendations

You can also search by condition: e.g. Fibromyalgia, ME/CFS, dysautonomia, migraine

Reblog posts will be tagged #reblogged resource

🦋 Also posting daily on BlueSky as spoonieresources

📙 And weekly (sometimes twice a week) on Substack (for free!)

Please note: This blog is not run by a healthcare professional; I am just another chronically ill and disabled person who wants to help connect people in my community with resources. I do my best to make sure I am only sharing accurate information and trustworthy sources, backed by science wherever possible, but it is possible I have missed something or made a mistake. Please read the information shared on the blog skeptically and seek advice from a medical professional before changing your medications, starting to use a mobility aid, or making any major lifestyle changes.

Hemorrhoids (aka piles) are fairly common in the adult population, and people with EDS or people who frequently experience constipation may be more likely to develop them. In this resource, a colorectal surgeon gives eight tips for how to help keep hemorrhoid problems from flaring up:

For basic info on what hemorrhoids are, check this out.

📰 Good news for people with osteoarthritis — a new procedure is in development that blocks the abnormal blood vessels that develop around an arthritic knee, reducing inflammation in the joint. This nonsurgical procedure is a lot less invasive than knee surgery and provides pain relief and improved function for at least a year!

📰 A genetic marker has been found for the more severe end of ulcerative colitis and Crohn's disease. The researchers hope that these findings could lead to genetic testing that would identify people with inflammatory bowel disease who are at risk of severe disease so that they can be given advanced therapies earlier.

📰 Recent research has uncovered a way to mitigate the high risk of blood vessel damage for people with type 2 diabetes and obesity. Changes in the thin layer of fat that surrounds blood vessels are known to contribute to vascular disease which, in turn, can lead to heart attacks and strokes. Researchers were able to correct this error with epigenetic drugs.

📰 A recent study into how migraine affects drivers has shown concerning results. Previous studies suggested that only about 20% of people with migraine experienced severe driving limitations. However, this new study found 70.6% of people experienced headaches while driving, and "headaches occurred during approximately 13% of all trips, resulting in significant cognitive and sensory disruptions that may heighten a driver’s sensitivity to challenging road conditions..."

📰 A study that looked back at the prevalence of multiple sclerosis between 2003 and 2022 has discovered what seems to be behind the steep rise in MS — lifespan. Due to advances in treatment and care, people with MS are living longer after diagnosis so it's not that there is a higher rate of people developing MS, but just that more people are living with it at the same time.

This video from the Bateman Horne Center breaks down the core symptoms of ME/CFS, including PEM, cognitive impairment, unrefreshing sleep, and orthostatic intolerance:

This resource covers what allodynia is, how it's different to hyperalgesia, theories on why it occurs, what you can do to cope with allodynia, and when to talk to your doctor about it:

"This post isn’t about pushing through, reframing your mindset, or trying harder. It’s about why burnout shows up so often alongside chronic illness, why conventional advice rarely helps spoonies, and what actually supports sustainability when your energy is limited and unpredictable.

If you’re reading this because you feel worn down, behind, or quietly unsure how much longer you can keep going like this, you’re not broken. Burnout in chronic illness is not a personal failure. It’s a pattern. And patterns can be interrupted."

"While diet does not cause gastroesophageal reflux disease (GERD), reflux and its most frequent complaint of heartburn can be aggravated by foods. Certain medications can aggravate symptoms ... there are a number of things that you may be doing that brings it on and some things you can do to help prevent it."

If you've followed this blog for a while, these are resources you will have seen already but please share this with your chronically ill friends and family who aren't on Tumblr ✌️

"Growing POTS awareness is a start, but ME/CFS and Long COVID patients need clinical pathways that recognize the full spectrum of orthostatic intolerance — even when POTS criteria aren’t met."

Phil Sizer, a Pain Health and Wellbeing Coach from Pain Association Scotland talks over a few tips for improving sleep in this 4-minute video...

"In energy-limiting conditions like ME/CFS, Long COVID, POTS, and dysautonomia, temperature regulation is one of the most commonly disrupted functions. This is because the autonomic nervous system (the part responsible for managing core temperature, blood flow distribution, sweat response, and vascular tone) is operating under a different set of rules than it used to."

A masterlist of all of the resources I've collected so far under the #get prepared resources tag – from suggestions on items to gather into a spoonie toolbox for your bed bound days to tips on how to prepare for surgery or travel...

Getting prepared for spending a lot of time at home/in bed:

The bed kit – Tumblr post by @ghost-kings-court-jester

The chronic illness toolbox list for people who are largely housebound or bedbound – a Tumblr post started by me on my main and added to by many wonderful people

Getting prepared for going out:

The 'go bag' list – Tumblr post by @dearchronicme

Tips for Incontinence (this article is aimed at seniors but hopefully there's still something useful in here for people of any age)

Getting prepared for surgery:

Surgery: A Lived-Experience Guide – article by Arthritis NZ with tips for preparing for surgery (some of the info may be specific only to arthritis surgeries or only to New Zealand but may still be useful to people with other circumstances)

Getting prepared for emergencies:

Fire evacuation for people with limited mobility – a Tumblr thread started by @teaboot with a great addition from @ravynfyre

How Wildfire Smoke Affects Health and How to Cope – an article by Harvard Health with tips for how to keep yourself as healthy as possible when wildfire smokes affect your region

📰 A miniature injectable device is being developed that will help treat chronic pain and movement disorders. Revolutionizing implant technology, this new device is the size of a seed and powered wirelessly, thus eliminating the need for batteries, wires, and surgery!

📰 A new study found that people with celiac disease showed consistent differences in immune cell function. There even appear to be differences in immune system functions before symptoms develop. The researchers hope these findings will lead to more personalised monitoring and better care in the future.

📰 Researchers from Radboud University Medical Center have developed a new test that is better able to diagnose rare genetic disorders, provides a much more complete picture of DNA, and can replace fifteen other tests!

📰 Scientists may have figured out a way to regrow worn-out joint cartilage! This could be a game-changer for people with cartilage damage from aging or arthritis, and could even eliminate the need for knee and hip replacement surgeries in the future.

📰 Researchers at Kyushu University have discovered that the circadian clock may be linked to inflammatory responses in immune cells. These findings could improve treatmeants for inflammatory diseases and cancer as they indicate that giving anti-inflammatory drugs at a particular time of day could enhance treatment efficacy and minimize side effects.

Myasthenia gravis support organisations outside the USA:

🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁷󠁬󠁳󠁿🏴󠁧󠁢󠁳󠁣󠁴󠁿🇬🇧 Myaware

🇨🇦 The Myasthenia Gravis Society of Canada

🇪🇺 European Myasthenia Gravis Association

🇺🇸 MG support organizations in the USA:

The Myasthenia Gravis Foundation of America

The Myasthenia Gravis Association (Kansas, Missouri, and Northwest Arkansas)

Conquer Myasthenia Gravis (Illinois, Northwest Indiana, and Southeast Wisconsin)

Myasthenia Gravis Minnesota

The Myasthenia Gravis Foundation of Michigan

Online support groups/forums:

Forums on Myasthenia Gravis News

Myasthenia Gravis News' Facebook group

Myasthenia Advocacy for Young Adults Facebook group

Myasthenia Gravis Society's Facebook

MG resources:

🎥 Myasthenia Gravis Foundation of America’s YouTube channel