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moriahnightingalesportfolio · 9 months

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4 years ago my life changed forever. I became completely disabled by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

ME/CFS is the chronic illness that ended my career before it even began. I went from an honor student working and walking for hours every day, to a fully disabled person who can barely climb a flight of stairs and will never be able to work again. Even the simplest things like making a bed or texting a friend can be physically impossible because of how debilitating this illness is.

There are NO FDA approved treatments for this illness, and the number of people with ME/CFS is rising exponentially because of the high overlap with long covid.

Please take a few minutes to educate yourself about the basics of this devastating illness. @meactnet and https://www.cdc.gov/me-cfs/about/index.html are great places to start

#me/cfs #MEAction #chronic illness #chronic fаtiguе ѕуndrоmе #disability #disability activism #long covid #mecfs #mecfs awareness #MNart

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impactofhealth · 27 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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gender-sexuality-happiness-rage · 11 months

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#millionsmissing #MEAction

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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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oystertongue · 2 years

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social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness.

Social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness. "Contested" here describes not just disagreement about the finer details of etiology or treatment, but wholesale doubt about the existence of the illness as a distinct and discrete medical entity - contested illnesses are ontologically contested.

A useful concept? well...maybe. (No. It's no.) Describing an illness as "contested" necessitates that we reproduce the medical literature as genuinely ambivalent, and in the case of me/cfs, this is downright misleading. We certainly do not know everything about me/cfs, but there *is* robust evidence for immunological and neurological abnormalities among me/cfs patients. There has been for 30 years. and the evidence that pwme/cfs are really experiencing something else entirely - depression, or deconditioning, or whatever - is comparatively extremely thin. Like...cheesecloth.

On the surface, it might look like the medical lit contradicts itself, but we as researchers can't this at face value. we know that medical research is political, mired in social and institutional controversy, subject to bias and manipulation - this is not news! but the term 'contested illness' captures none of this - in fact, it reproduces more controversy where there should be less. There's a lot we don't know about me/cfs, but the "contested illness" framing more often than not elides the fact that there's also a lot we DO know. framing this illness as wholly mysterious is misleading, and ultimately does a disservice to patients, who suffer both from a debilitating illness and from its marginal, stigmatized status.

Me/cfs is just one of many illnesses that gets glossed as 'contested' - what are we missing about the others? can we actually contribute to resolving these debates if we're hanging our whole analytical hat on the notion of controversy?

#meawarenessday #may 12 #mecfs #chronic fatigue syndrome #myalgic encephalomyelitis #meaction #words #mine #diss blogging #millions missing

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helloiamausacresfan · 2 years

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This is a link to the current #MEAction #MillionsMissing 2022 protest in front of the White House.

While you're here, here is also a link to both tweet and email President Biden to get him to DO SOMETHING about both the still-rampant spread of COVID and the still-rampant onslaught of long COVID, ME/CFS, and other postviral diseases in our country.

And then if you want and can do more, here is a link to the Home Activist Toolkit for #MillionsMissing #MEAction

And then here is a link to check your voter registration as well:

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jaybird1306 · 2 years

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#millions missing #me/cfs #myalgic encephalomyelitis #meaction #now you see ME

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pandemichub · 11 months

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myalgicencephalomyelitiscfstom · 10 months

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From The #MEAction Network

Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this post helps!

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://www.meaction.net/resource/pacing-and-management-guide

#pwME #MECFS #LongCovid #pacing #Post exertional malaise

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auressea · 8 months

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I know a number of people who are NOW chronically ill. Many of them have not been given any support or resources to adapt.

additionally-Newly disabled people can take a really long time to come to terms with reduced function and barriers.. there's a long process of overcoming our internalised ableism.. to accept our new landscape.

Please. PLEASE-- allow yourself to REST. PACING is IMPORTANT!

#ME/CFS #chronic fatigue #chronic disability #living with chronic conditions #rest #long covid #post viral syndrome #inclusion #access #human rights #disability rights #pacing is important

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brostateexam · 1 year

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If you aren’t entirely sure what resting for your well-being actually means, you’re not alone: It is hard to define. “It’s going to depend on how that person feels and where they are in terms of getting back to their normal,” Jaime Seltzer, director of scientific and medical outreach at myalgic encephalomyelitis (ME) advocacy group #MEAction, tells SELF.

“Rest looks and feels different for different people, and I don’t think there’s necessarily one particular explanation for what rest can look like,” Karen Conlon, LCSW, founder and clinical director of Cohesive Therapy NYC, tells SELF. “However, there could be a general consensus around what it could feel like. One might say, ‘When I feel rested, I don’t feel worried and my body doesn’t feel tense,’ or, ‘My body feels relaxed. When I am resting, my mind isn’t ruminating.’”

It’s important to consider both your body and your mind when it comes to rest. “Our minds and our bodies are connected, not just through physiology, but also through ways of communicating,” Conlon says. “I think that is so important for people to wrap their heads around and try to really accept: You can't really take care of one without taking care of the other. They’re always in communication, informing each other what condition one is in.”

“Our brain activity, our neurological activity, is some of our most energetically demanding actually,” Seltzer says. “It isn’t just your muscles that do work. All of your organ systems do work, and your brain and your heart tend to demand a lot. So if you’re thinking very hard, you are definitely doing work.”

As I was working on this story, I came across a 2015 paper published in the journal Global Qualitative Nursing Research written by Margareta Asp, PhD, a professor in caring science at Mälardalen University in Sweden. In it, Dr. Asp makes the point that you can’t really understand rest without thinking about what it isn’t: “The essence of non-rest constitutes being strained between one’s limited resources and demanding expectations, which implies experiences of disharmony,” she writes.

#long reads

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rjalker · 11 months

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I’ve started calling the time we live in “The Great Forgetting.” Some call it “The Great Gaslighting.” Both are true.

By these terms, I mean the immense, on-purpose effort by the state to throw down the memory hole the fact that the last two years of the pandemic happened. The CDC switching its easiest-to-find map from the accurate community transmission map to one that shows the whole country in (fake) happy low-risk green. Biden saying offhandedly that “the pandemic is over” even as thousands of people die every week and groups like Long COVID Justice and #MEAction organize — from bed and in die ins in front of the White House — demanding that the U.S. declare long COVID a public health emergency. The state is acting like a bad boyfriend, a gaslighting partner telling you that nothing you remember is real. That’s not new, but the intensity level has reached a new high.

It shouldn’t surprise me. Of course, the state hates disabled people, even now that there are so many more of us. Of course, federal, state and local governments for the most part don’t want to pay for guaranteed income or disability payments or paid care work or accommodations. They want us to die slowly so they can save money.

Live link

Archived link

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cenobittten · 1 year

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youtube

There's a lot floating around about new trial graded exercise 'treatments' for M.E and Long Covid floating around again. History is repeating itself.

Time after time, those in the chronic illness community have spoken about the harm 'pushing through' pain and fatigue can do to a sufferer of Post Exertional Malaise.

Yet, rather than being guided by mounting biomedical research that shows there is a biological reason behind these symptoms, medical practitioners are still holding on to the 'sufferers are just deconditioned' narrative.

Post-Exertional Malaise causes a sufferer a real disproportionate blowback if a sufferer goes 'past their limits'. This can not only create an increase in fatigue and symptoms in the short term - often for days after - it can permanently reduce your capabilities in the long term. The chronic illness community is packed full of horror stories about individuals who have taken part in exercise-based treatments (formal or informal) and have made themselves so sick, they are housebound and/or unable to take care of themselves. The worst affected are unable to get out of bed.

If you are still feeling fatigued after Covid or any other bout of illness, don't get persuaded into 'exercising to health'. Follow the advice of the chronic illness community and practice 'radical rest'. Break longer activities into manageable chunks and avoid exercising to exhaustion.

When I became chronically ill, I found this guide absolutely invaluable.

As COVID continues to make the rounds, I fear more will need this advice as time goes on :/

#covid #m.e #chronic fatigue #myalgic encephalomyelitis #Youtube

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thepotentialof2007 · 9 months

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As the historian Emily K. Abel notes in Sick and Tired: An Intimate History of Fatigue, many studies of everyday fatigue at the turn of the 20th century focused on the weariness of manual laborers, and were done to find ways to make those workers more productive. During this period, fatigue was recast from a physiological limit that employers must work around into a psychological failure that individuals must work against. “Present-day society stigmatizes those who don’t Push through; keep at it; show grit,” Dujardin said, and for the sin of subverting those norms, long-haulers “are not just disbelieved but treated openly with contempt.” Fatigue is “profoundly anti-capitalistic,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me.

Energy-limiting illnesses also disproportionately affect women, who have long been portrayed as prone to idleness. Dujardin notes that in Western epics, women such as Circe and Dido were perceived harshly for averting questing heroes such as Odysseus and Aeneas with the temptation of rest. Later, the onset of industrialization turned women instead into emblems of homebound idleness while men labored in public. As shirking work became a moral failure, it also remained a feminine one.

Medicine, too, absorbs society’s stigmas around fatigue, even in selecting those who get to join its ranks. Its famously grueling training programs exclude (among others) most people with energy-limiting illnesses, while valorizing the ability to function when severely depleted. This, together with the tendency to psychologize women’s pain, helps to explain why so many long-haulers—even those with medical qualifications, like Misko and Oller—are treated so badly by the professionals they see for care.

There is so much cultural pressure to never stop that many people can’t accept that their patients or peers might be biologically forced to do so.

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Ed Yong, “Fatigue Can Shatter A Person”

#chronic fatigue #long covid #ed yong #living with disability #manual labor #western medicine #gendering disability #illness as a moral failing #fatigue is profoundly anti capitalistic #links removed from original #the atlantic #2023

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lesbianfeminists · 2 years

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#women’s health #disability

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helloiamausacresfan · 2 years

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Gwen B. with #LC / @PenGwenWithLC on Twitter: "

Something worth supporting for the entire #MECFS and #LongCovid community! #MillionsMissing #NotRecovered Please share and get involved as you are able!"

Link to #MEAction site and further information on the event:

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