halcionandon, to mecfs
@halcionandon@aus.social avatar

Please and share to other platforms.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an ? I need help.

@covid19 @mecfs @chronicillness @auscovid19 @neisvoid @disability @disabilityjustice @socialwork
@dysautonomia
@dysclinic
@mutualaid

halcionandon, to mecfs
@halcionandon@aus.social avatar

Please and share to other platforms.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.

@covid19
@mecfs
@chronicillness
@longcovid
@neisvoid
@disability
@disabilityjustice
@socialwork
@dysautonomia
@dysclinic

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New 12-minute video:

"I believe microglia are the primary culprit behind #fibromyalgia, #MECFS, #GulfWarIllness, #LongCOVID, and other #chronicpain & fatigue disorders.

Here is a quick video on what I am trying to do to fix the problem. - Jarred Younger"
https://www.youtube.com/watch?v=XggO__DlALw

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME @longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
@chronicpain @fibromyalgia
#Fibro #FMS #FM

tomkindlon, to MultipleSclerosis
@tomkindlon@disabled.social avatar

Detailed report now available for free for:

Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop

https://pubmed.ncbi.nlm.nih.gov/38648305/

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#PTLDS #multiplesclerosis @mecfs
#Lyme
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/
3-minute video summary of “A Switch Went off in my Whole Body”: Lived Experiences of Fatigue & in

https://dl.acm.org/doi/abs/10.1145/3544549.3585846


@longcovid @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Prusty Lab, the laboratory and team of ME/CFS researcher Bhupesh Prusty has a new website. Prusty is currently Professor of Science at Rīga Stradiņš University in Latvia.

https://www.prustylab.org/


@mecfs

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

Dr Barnden and his team at Griffith University & the University of Queensland have recently published new findings showing increased neurochemical levels in the brains of people with ME/CFS & #longCOVID

Find out more: https://bit.ly/3Q2EA51

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#PwLC #PostCovidSyndrome #LC #PASC #postcovid
@covid19 #COVID19 #COVID #SARSCoV2 #CovidBrain #auscovid19 @auscovid19

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

Hand grip strength, a measure of muscle fatigue, has previously been explored in ME/CFS. A recent study conducted by researchers from Charité – Berlin University of Medicine extended this research to

Read more:
https://www.meresearch.org.uk/hand-grip-strength-a-marker-of-me-cfs-disease-severity/

@mecfs @mecfs_de
@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

Post exertional malaise is often referred to as the cardinal symptom of ME/CFS – & one also experienced by some with long COVID. A new paper looks at how monitoring lactate levels in the blood may provide a way to support pacing strategies for PEM
https://www.meresearch.org.uk/blood-lactate-monitoring-a-tool-to-support-the-management-of-post-exertional-malaise/

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

(US) Solve ME/CFS Initiative has created an automated tool (meant for folks in the USA) https://p2a.co/tE8DZk8 that will contact your Member of Congress & ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs).

@mecfs

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from NCNED team in Australia:

"Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI"

Free full text:
https://www.sciencedirect.com/science/article/pii/S000293432400216X

"This research is funded by ME Research UK"

@longcovid
@mecfs

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

https://www.popsugar.com/fitness/mecfs-post-covid-49344168

'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME @longcovid
#LongCovid #PwLC

tomkindlon,
@tomkindlon@disabled.social avatar

5/
"The connection between long COVID and ME/CFS has helped raise awareness about both conditions post-pandemic, offering some new research into the processes at play. It's a welcome change for patients and experts like Dr. Bonilla who are hoping for more investment in ME/CFS and long COVID research. But there's still a long way to go when it comes to representation, care, and stigma."

@mecfs

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

EEG study from Canada:

Machine learning algorithms for detection of visuomotor neural control differences in individuals with PASC and ME

Full text just published (for free) here:
https://www.frontiersin.org/articles/10.3389/fnhum.2024.1359162/full

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"Why it's important that PEM is not fatigue"

https://mecfs.substack.com/p/why-its-important-that-pem-is-not

"*PEM is post-exertional malaise, also known as post-exertional symptom exacerbation. It is a symptom of ME/CFS and is also found in many people with "

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

3/
"But there is an even more important difference between PEM and fatigue: duration.

Fatigue generally lasts 24 hours. In really exceptional circumstances, say if someone ran a marathon, fatigue might last a couple of days."

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#MEcfs #PwME

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/

"PEM is dangerous. PEM can last hours, days, weeks, months, or a lifetime. Its duration and severity are wildly out of proportion to whatever prompted it. It can result in permanent harm. PEM can take a person who is able to work or look after their children, and make them bedbound. PEM destroys lives."

@longcovid @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC

moss, to random
@moss@wandering.shop avatar

Hey , I might be boarding an airplane for the first time in a while.

Besides the comfiest highest filtering best fitting mask I can find, any tips or warnings?

(I’ve flown using wheelchair assistance many times before, so thankfully I’m used to that + the TSA vs mobility aid song & dance)

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Guys what do I treat #Covid with? How do I get #Paxlovid? Does it work? This is a 3rd time infection but because of heavy brain fog I can’t remember the treatments or supplements used!😩

Already got #LongCovid!

Help please.

In Australia for Paxlovid reference. Most things closed today (Good Friday).

#ChronicIlness #Neisvoid
#MECFS #pwlc #Pwme

@longcovid
@mecfs
@neisvoid
@chronicillness
@multipledisabilities

moss, to random
@moss@wandering.shop avatar

Hey #pwLC: question!

I’ve been through a handful of medical interventions, including seeing a GP at a Long Covid Clinic, Speech Language Pathology with a Long Covid Informed SLP, and now doing pacing focused PT with a physio.

If I curated a blog post with:

  • their/my notes
  • recommended guides, explainers, tools
  • OTC available starter items (like salt mixes & discounts, compression garments, allergy meds)

would that be helpful or not so much?

Moby_MicroDick, to random French
@Moby_MicroDick@piaille.fr avatar

♿ 🛏️
C'est jusqu'au 6 avril,
l'exposition "De la vie au lit",
à Montréal, mais proposant des modalités de retransmissions web,
et il s'agit du travail fondamental de l'excellente commissaire française Sarah Heussaff (qui est actuellement publiée dans le dernier Multitudes).

Je suis profondément heureux de ce travail, il correspond notamment à plein d'échanges entre Sarah et moi, et la continuité de son travail pointu dans les Disability Arts / Arts Handicapés.
C'est tout un pan de la culture handie & malades chroniques qui est étudiée via nos vies alitées puissantes. Nous existons allongé-es.

Vive invitation à regarder.
👉 https://galerie.uqam.ca/expositions/de-la-vie-au-lit/

Moby_MicroDick,
@Moby_MicroDick@piaille.fr avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

Developing effective strategies to optimize physical activity and cardiorespiratory fitness in the long Covid population- The need for caution and objective assessment

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S0033062024000392

@longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

2/

"In this review, the authors present an update to the literature relating to PESE in and make the case for evidence-based guidelines that support the design and implementation of safe rehabilitation approaches for people with Long Covid."


@longcovid

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