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#MECFS

119 posts53 participants14 posts today
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Cazimodo Creative

Good morning everyone 🌞 I am still laid up today, but starting to feel a little bit more human after a lot of rest. Grant has taken carer's leave to look after me, and most importantly the parrots ☺️ Hopefully we will all be back to normal soon. Thanks to everyone for the well wishes. You are very lovely 💕

#MECFS
Public
Anna

Someone please take me in very soon or I will die here.
-No masking
-Mouldy room
-No help
-Little food
-Nowhere to shower. No seat allowed, mouldy
-No aircon (w severe #POTS)
-Sister moved next door comes eat, yell
-Sensory overload
So much more. No places to go for severely disabled.
Need GOOD PEOPLE TO HELP ME.
Screaming for years my health & situation terrible
Help me😭
#MECFS #LongCovid #ChronicPain #Abuse #Neglect #SeverePwME

@mecfs
@severeme
@longcovid
@chronicpain
@neisvoid
@pwme

Public
Tom Kindlon

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

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

Journal of Medical Internet Research Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel "The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"
Public *
Tom Kindlon

Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia

frontiersin.org/journals/neuro

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #GulfWarSyndrome #GulfWarIllness #GWI

Frontiers in Neuroscience Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia — Davis et al. "These results suggest a metabolic shift in ME/CFS patients from a hypometabolic state at baseline, characterized by down-regulated pathways to a hypermetabolic state post-exercise, characterized by over-activated pathways." "energy production pathways may fail to respond efficiently to physical exertion, potentially driving exacerbation of symptoms seen in PEM."
Replied in thread
Public
ahimsa

@plaguepoems
About 5 years ago (see image below, saved this tweet before I deleted my account) I asked whether COVID would cause more ME/CFS cases and whether anyone was going to study this issue. And I was not the only person asking this!

We now have a study showing that this is indeed what happens 😢

Among participants infected with SARS-CoV-2 the incidence of ME/CFS is 15 times higher than pre-pandemic rates.

batemanhornecenter.org/covid-1

Tweet from "ahimsa is on Mastodon now" (@ahimsa_pdx) "We know that many (most?) cases of ME/CFS are post viral. Is anyone going to study what happens after COVID-19 infection - do some patients end up with ME/CFS? Seems like a good research opportunity." 9:54 PM - March 8, 2020
#COVID19#MEcfs#LongCovid
Public
Tom Kindlon

More on the scrapped update to the Cochrane review of exercise therapy for ME/CFS

s4me.info/threads/2025-the-201

s4me.info/threads/2025-the-201

drive.google.com/file/d/1bJzQ7

pacific.qualtrics.com/jfe/form

s4me.info/threads/survey-on-th

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Letter to the ME/CFS community and consultation Mary Dimmock and Todd Davenport also wrote a letter to the ME/CFS community. "When Cochrane disbanded this initiative in December 2024, they told the authors they retained the rights to use the contents of the draft protocol elsewhere. The other authors have relinquished their rights and moved on. As the remaining authors, we have decided to release the final draft protocol, as submitted to Cochrane in February 2023, and to solicit public comment." They describe the extensive work of the author group, and their shock at the announcement, adding "This risk of harm is compounded by Cochrane’s decision to revise the date of Larun et al from October 2019 (2) to December 2024". They have made the protocol public and set up a public consultation survey. Letters | Thread | Protocol | Survey | Thread
Continued thread
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Mx. Luna Corbden

Here's a little executive function tip based on my Splines Theory.

If you're having trouble starting a complicated and boring task, give yourself time to "load the splines." Splines are just my silly word representing the fact that ADHD and autistic people are more detail-oriented. We have a hard time accessing an idea by its summary, and need to think about the whole system with all its parts (splines) in order to grapple it. This takes time and energy.

But the good news is, reticulating splines is mostly a passive activity. First step, the hardest, is communicating to your brain about what it needs to load.

A few hours ago when I started gathering paperwork for taxes, I felt incredibly overwhelmed and my chronic pain was activated. So I pushed myself to kinda get started (updating my list from last year, opening the email folder, creating some folders on my computer), but then I hit a wall. Under intense overwhelm, I couldn't get started turning those emails into PDFs.

But my brain knows what it needs to do. It just needed time. I entered my passive splines reticulating phase, which can take anywhere from a few hours to a few days. Since I only have a week to get this to my CPA, the sooner I started the loading process, the better. Most of that happens in the background. The hardest part was telling my brain to start, which I did by giving a glance to the body of details I will need to absorb.

Then I went did a couple of hours of paid writing work which my brain normally expects on a Monday (so that went easier). And then back to taxes to see if things were flowing better.

And they are! I still hate it! But now my mind has an understanding of the task and it doesn't seem impossible.

I will work on it until I feel sick and foggy again, then I will pick up tomorrow where I expect it to go even more smoothly.

Here's my 2013 post on Splines Theory of neurodiverse executive function.

#taxes #ADHD #ActuallyAutistic #pacing #MECFS

corbden.com/2013/10/splines-th

www.corbden.comSplines Theory: A Spoons Metaphor for AutismA blog about indie publishing, urban fantasy, and geek culture.
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