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myalgicencephalomyelitiscfstom · 7 months

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ME/CFS = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome LC = Long Covid PEM = post-exertional malaise

#LongCovid #PwLC #MEcfs #PwME #MyalgicE

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atikas · 7 months

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Unrest (Jennifer Brea, 2017)

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The full documentary is now available to watch for free on YouTube. Please consider watching. People need to know the truth of this illness so that we can get the funding we need and deserve. This is another example of an illness that affects mostly women and is treated horrifically by the medical system.

#myalgic encephalomyelitis #medical misogyny #mecfs #pwme #chronic fatigue syndrome #myalgice #chronic illness #jennifer brea #chronically ill #spoonie #unrest film #the full documentary is now up on the unrest film YouTube channel for free #*#Youtube

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impactofhealth · 20 days

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7 Steps to Health Equity: Addressing Root Causes Now in 2024

Health equity is more than just equal access to healthcare services. It means giving everyone a fair chance to be as healthy as possible, no matter their background or circumstances. This includes addressing the social and economic factors that can create barriers to good health. Read More...

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iammadelinepod · 10 months

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While I have been on Tumblr for at least a decade as a nerd girl/nerdfighter I haven't been sharing what's been going on with me in a larger sense. I'm not sure if I'll connect up my personal Tumblr with this(so it won't look like I have followed you back but I probably have), I'll have to have a think about that as my personal Tumblr has been an oasis as I've been fighting to stay alive against ridiculous and seeming unsurmountable odds. I sum it up here in a article I wrote for the disability Alliance of British Columbia last fall

https://disabilityalliancebc.org/article-im-fighting-to-live-but/

Full story in the I am Madeline podcast

https://anchor.fm/i-am-madeline

As I did in the Twitter account in their pinned tweet I will include all of the media articles that have been done so far as well as the Reddit thread that included much kindness and a lot of stuff that made me want to bang my head against a wall. Also some articles about post viral syndrome and me particularly long covid as those are the new additions to the post viral syndrome community. I don't have a lot of energy probably because of my disease but because of the dyslexia textual communication can be quite difficult for me so I'm not going to try to edit the file that I kept the media links and the general medical articles and. So I hope you can make sense of it and that all of the links still work.

I think / hope that I should be able to pin this to the top of this tumblr

In no particular order here is the link dump

Gfm

https://gofund.me/cff39173

https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet

Citr ep April 6 2023

https://www.citr.ca/radio/all-access-pass/episode/20230406/

Petition

https://www.meaction.net/2022/03/01/you-can-still-help-madeline/

https://dir.gov.bc.ca/gtds.cgi?show=Branch&organizationCode=HLTH&organizationalUnitCode=MH

Dabc Nov 2022

Blog

https://disabilityalliancebc.org/article-im-fighting-to-live-but/

Pdf mag

https://disabilityalliancebc.org/transitionfallwinter22/

Tyee November 14 2022

https://thetyee.ca/News/2022/11/14/Chronically-Ill-Dying-Poverty/

Chatelaine

https://www.chatelaine.com/health/maid-assisted-death-poverty/

Podcast

https://anchor.fm/i-am-madeline/episodes/Ep--1---How-do-you-solve-a-problem-e110jks

https://anchor.fm/i-am-madeline

(https://www.iammadeline.com/)

City tv news Hana Mae change of by-line

https://vancouver.citynews.ca/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/

Media

News 11:30

https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/

https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/

Tyee article

https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/

Canada land podcast

https://www.canadaland.com/madeline-medical-assistance-in-dying-priced-out-of-life/

https://www.canadaland.com/podcast/723-the-high-cost-of-living/

Update

https://www.canadaland.com/podcast/741-updates-on-pretendians-porn-and-being-priced-out-of-life/

Millions missing simulcast

https://twitter.com/millionspod/status/1450838974864445440?t=tiE3pZtRLB9LiRVXIg4u8g&s=19

My Op-ed

https://quoimedia.com/canadians-with-disabilities-like-me-are-choosing-to-die-because-we-dont-have-the-financial-resources-to-live/

https://ipolitics.ca/2021/11/15/the-disabled-are-choosing-to-die-because-they-cant-afford-to-live/

Reddit post about op-ed

https://www.reddit.com/r/onguardforthee/comments/qul8c3/the_disabled_are_choosing_to_die_because_they/

are live on QUOI Media’s website.

https://quoimedia.com/canadians-with-disabilities-like-me-are-choosing-to-die-because-we-dont-have-the-financial-resources-to-live/

https://quoimedia.com/des-canadiennes-et-canadiens-en-situation-de-handicap-comme-moi-choisissent-de-mourir-parce-quils-nont-pas-les-moyens-de-vivre/

INFO

Gender bias in research

https://pubmed.ncbi.nlm.nih.gov/33232627/

Costs two to three times more to be disabled

https://pubmed.ncbi.nlm.nih.gov/31026771/ https://pubmed.ncbi.nlm.nih.gov/31026771/

Mayo

https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

Bateman Horne PDF

https://twitter.com/BatemanHorne/status/1462907081686540290?t=MzYkyjZ_-QYAH4_td5zUFA&s=19

NICE COMM

https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management

Twitter link to various ME studies

https://twitter.com/CPrudhommeAQEM/status/1500854349442002951?t=U-DZG-DLNUqYVkz-Ygoewg&s=19

Pdf of studies

https://www.me-international.org/published-me-icc-studies.html

CDC

https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html

Disprove cbt

https://journals.sagepub.com/doi/full/10.1177/2055102919838907

Blog reply to above

https://blogs.bmj.com/medical-humanities/2021/03/23/the-concept-of-illness-without-disease-impedes-understanding-of-chronic-fatigue-syndrome-a-response-to-sharpe-and-greco/

Physio

https://www.physio-pedia.com/Myalgic_Encephalomyelitis_or_Chronic_Fatigue_Syndrome

Me from covid

https://meassociation.org.uk/2020/05/me-awareness-columbia-university-will-there-be-a-post-covid-19-form-of-me-cfs-26-may-2020/

Australia me study small town

https://www.bmj.com/content/333/7568/575

Percentage of doctors you understand me

https://doctorswith.me/poor-knowledge-of-me-cfs-among-doctors-puts-patients-at-risk-of-harm/

https://www.hsph.harvard.edu/news/press-releases/epstein-barr-virus-may-be-leading-cause-of-multiple-sclerosis/

https://pubmed.ncbi.nlm.nih.gov/33232627/ gender disparity in research money and allocation by NIH

https://onlinelibrary.wiley.com/doi/full/10.1111/1753-6405.13139

Wiley Online Library

Australian and New Zealand Journal of Public Health

Volume 45, Issue 5 p. 424-426

Commentary

Open Access

Sex and gender gaps in medicine and the androcentric history of medical research

Lea Merone, Komla Tsey, Darren Russell, Cate Nagle

First published: 28 June 2021

Interrelationship between myalgic encephalomyelitis and long covid

https://www.science.org/doi/10.1126/science.abo1261?utm_campaign=SciMag&utm_source=Social&utm_medium=Twitter

Brain fog https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/

https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/

Forbes

https://www.forbes.com/sites/roberthart/2021/07/15/long-covid-has-over-200-symptoms-and-leaves-1-in-5-unable-to-work-study-finds/?sh=1f11766e5eb2

herpes simplex including Epstein-Barr latency and damage to genome tissue study sample including autopsies

https://www.frontiersin.org/articles/10.3389/fmolb.2022.1044964/abstract

https://twitter.com/loscharlos/status/1612196453258256384?t=C1UGoqR72JjmBeVRreJ41A&s=09

What #LongCovid continues to experience is a social medical phenomena know as the **Semmelweis Reflex** —

“the metaphor for the reflex-like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms.” 🧵

I was introduced to this term while reading @meghanor excellent, essential book “Invisible Kingdom”

As she shared, it was named after the doctor who said physicians assisting with childbirth should wash their hands to reduce maternal mortality & was exiled from the profession

https://www.scientificamerican.com/article/a-tsunami-of-disability-is-coming-as-a-result-of-lsquo-long-covid-rsquo/

https://fortune.com/well/2023/05/23/covid-deaths-one-person-every-four-minutes-vaccination-rates/

Protect BC

https://protectbc.ca/public-healt-scandal-failure-to-warn/

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chronicallydragons · 3 months

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anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

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mindblowingscience · 30 days

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In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

#Science #chronic fatigue #chronic fatigue syndrome #myalgic encephalomyelitis #stem #biology #medicine

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violet-phoenix-nebula · 1 month

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When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

#disability #disabilities #invisible disability #chronic disability #disabled #physically disabled #chronic fatigue syndrome #chronic illness #chronic pain #chronic fatigue #chronically ill #cfs #cfs/me #mecfs #myalgic encephalomyelitis

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chronically-persistent · 3 months

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You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.

#chronic illness #disability #chronic fatigue syndrome #me/cfs #myalgic encephalomyelitis #chronic pain #fibromyalgia

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tiredsn0w · 1 month

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This can't just be me, right?

#personal post #disability memes #fibromyalgia #myalgic encephalomyelitis #autoimmune disease #chronic pain #chronic fatigue #chronic illness

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myalgicencephalomyelitiscfstom · 6 months

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#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #CFSME #MyalgicE

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i-the-spoonie · 9 months

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Feeling this right now :(

#disability #chronic illness #spoonie #mecfs #myalgic encephalomyelitis #pots #actually disabled #potsie #spoonie memes #barbie #disabled #ableism

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m-e-and-more · 1 year

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I am one of #MillionsMissing with #MECFS. #MyalgicEncephalomyelitis is a severely disabling #postViral #neuroimmunological #ChronicIllness with no FDA approved treatments and no cure. Only 5% of #pwME recover (Health Rising, 2021).

Before getting sick I was a choral singer and carillonneur performing all over North America and Europe. I interned for Google in Data Anonymization. I was a student one semester from graduation at Wellesley College. I swam, skiied, danced, walked, and studied with ease. ME stole my life, and yet still I am here, not dead, not living, just missing. My brain is clouded and my limbs turned to lead.

ME patients functioning scores are worse than those with depression, stroke, MS, heart attack, or HIV. Only comperable to those with widespread #chronicPain and cancer patients in #palliativeCare (Standford MECFS Initiative, 2019).

#SevereME is often described as #livingDeath and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.

Outdated practices such as #GET and #CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with #LongCovid need to be advised to #StopRestPace to minimize the spread of this horrible disease.

My #SevereME started out mild. But I was not advised about #PostExertionalMalaise or #PEM the defining feature of MECFS. I did not pace and I slowly had my life stolen by this terrible disease until I became #bedbound over a year go. Please #LearnFromME and implement pacing before it is too late.

Research into ME is extremely underfunded and necessary to improve long term outcomes for patient with #ME.

Despite an economic burden of 36-51 billion dollars per year in the US alone, the NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden. (Open Medicine Foundation 2021, Health Rising 2021)

I urge all who see this to fight with me. This disease is real and not rare. We need treatments and research now. Already far too many are missing, help us come back to life.

#mecfs #myalgic encephalomyelitis #education #me #cfs #chronic fatigue syndrome #me is not just chronic fatigue #myalgicE #chronic fatigue #chronic illness #spoonie #chronically ill #millions missing #millions more

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drifting-bones · 5 months

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they should invent walking that doesn't make you feel like you're going to keel over and die

#disability #disabled #physically disabled #me/cfs #myalgic encephalomyelitis #joint pain #joint problems #cripple punk #physical disability #mobility aid #cane user #mobility aid user #ow my joints #chronic fatigue #chronic pain #chronic illness #chronically ill #chronic migraine #long covid

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thatchronicfeeling · 10 months

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July is Disability Pride Month

Let’s celebrate by keeping disabled people ALIVE and SAFE.

Want to know how you can help?

WEAR A MASK.

(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)

#disability #disability pride month #immunocompromised #me/cfs #myalgic encephalomyelitis #chronic fatigue syndrome #ulcerative colitis #ibd #Inflammatory Bowel Disease #pots #Postural Tachycardia Syndrome

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phleb0tomist · 9 months

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happy disability pride month to people whose main mobility aid is an adjustable bed

people who need to lie flat all the time

people who only sit up to eat or use the bathroom

people who are too unwell to be transported anywhere, even within their own home

people who structure their whole week around recovering from a single planned trip out of bed

people who are technically wheelchair users because they can’t walk, but can’t tolerate being upright for long enough to use a chair either

people who can’t adapt activities to be accesible, and instead have to just miss out on 90% of life

i see you and i respect you and love you. if you feel limited, confined, sick, or bound to your bed, i see you.

#ticked off my niche group ☑️#hashtag technically a mobility aid user but really just spends 23 hours daily horizontal in bed #disability pride month #myalgic encephalomyelitis #orthostatic intolerance #severe myalgic encephalomyelitis #obviously many things can make you bedbound but y’all know my area of expertise is M.E #severe ME #disability #txt #1000

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lolliepopcrusader · 2 years

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Calling all chronic creatives - here's how to up your crochet game!

I'm an avid crocheter, but holding the hook for long periods of time became exhausting and painful. Being chronically ill, losing the ability to enjoy my hobbies was tough for me accept.

My husband took me to the craft store and we purchased a ergonomic crochet handle. This handle needed to fit my criteria;

able to hold a variety of hook sizes

hold up to high tension crochet projects (I do a lot of amigurumi crochet, which you need to complete with tight tension)

reduce my wrist/hand pain

reduce the amount of grip strength needed to hold the hook to avoid fatigue

This ergonomic crochet handle *seemed* to tick all these boxes. It was quite an expensive purchase and to be honest, I was disappointed in it in all aspects.

The purchased handle uses small rubber stoppers to hold the crochet hook in place, but as you are crocheting the hook works loose and spins around inside it. The handle itself was too small, making it painful to hold. I had to use a lot of grip strength to keep it in my hand, which is what I was trying to avoid by purchasing the darn thing. The little knobbly bit at the end really dug into my hand and hurt. It was so annoying to use and I gave up on it altogether after three days of using it (not to mention one of the rubber pieces broke apart within hours).

I expressed my disappointment to my husband, and he decided to come to my rescue! Over the course of a week, he designed me his own ergonomic crochet handle in a computer program called CAD. He then printed it out using his 3D printer. I can't even begin to tell you how much I love this new handle - its a game changer!

During the design process, he took into consideration all of my complaints about the disappointing handle and my criteria that I had listed. The handle he designed is bigger, so it uses less grip strength to hold it in place which also reduces my pain.

Instead of using rubber stoppers like the other handle, he designed a 'lock and key' system for keeping the crochet hooks in place and it works fabulously! The hook never moves and I'm really rough with my crochet hooks. It holds up to my high tension crochet projects and I have completed many amigurumi with it, even small, intricate items. Since it is designed with the lock and key system, my husband was easily able to print different keys to be able to hold multiple sizes. I've got keys ranging from 1.25mm all the way up to 6mm!

I can now crochet for hours on end and I swear my crochet skills have gotten so much better.

After expressing my delight at the crochet handle my husband designed for me, both him and I want others to be able to experience the freedom that I now have when crocheting. With chronic illnesses, its important for you to be able to continue with your passions as much as possible, so we have decided to make this crochet handle a sellable physical item for others to enjoy.

Here's the link to purchase one if you would like to give it a go!

Each crochet handle will come with the hook sizes;

1.25mm

2mm

3mm

4mm

4.25mm

5mm

6mm

If you want other hook sizes, send us a message and we can design one.

The cost of the handle and keys covers the cost of the 3D printing material, we are not making a profit off of this because we want as many people suffering from chronic illness to be able to enjoy crocheting again. We are happy to post internationally as we are based in New Zealand, send us a message before purchasing so that I can get you the cost of shipping.

I hope you will love this crochet handle and hook set as much as I have!

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