Purple_Shaman @purple_shaman@qoto.org

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Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.

from:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs

@tomkindlon @mecfs

I'm surprised they didn't do two day CPET, that's pretty much the gold standard test for ME/CFS exertion intolerance now.

Also seems like the battery of tests they did would exclude anyone with severe or even moderate ME? A bit disappointing! We really need more studies examining the severe cohort.

But the confirmation of previous findings is something.

I've read a draft. It reconfirms previous findings, pushes back on pervasive medical misinformation & reports a few things that, to my eye, look new. But I don't think there's anything really earth-shattering in there. The researchers have come up with an overarching hypothesis for the illness, but they're doing so based on 17 patients...so that's a little dicey.

Now NIH has to follow through with clinical trials. The paper has some ideas for drugs to try. They need to do so.

/end

@mecfs For about a year, depression and anxiety have been tough for me. I’ve tried medications, and had to stop each one due to side effects. Medications were not very effective prior to #MECFS but fewer side effects. I wish I knew why I can’t seem to get relief and I wonder if it’s a symptom of #MECFS, if maybe it’s because fatigue makes it harder to emotionally regulate, or maybe it’s due to neuroinflammation. Maybe it’s a form of #AutisticBurnout? #ActuallyAutistic @actuallyautistic

A failure, but I'm going to take it as a win. 😀

Thanks to everyone who nominated me for this, or who have supported me in some other way over the years 👍

#MEcfs #CFS #PwME @mecfs

Blood transcriptomics reveal persistent #SARSCoV2 RNA and candidate biomarkers in #LongCOVID patients

https://www.medrxiv.org/content/10.1101/2024.01.14.24301293v1

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #longCovidChat
@covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain @auscovid19

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Press release:
"Tiredness experienced by #LongCOVID patients has a physical cause"

https://www.amsterdamumc.org/en/spotlight/tiredness-experienced-by-long-covid-patients-has-a-physical-cause.htm

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

@covid19 #Coronavirus
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #COVIDBrain
@auscovid19

Recording now available for NIH conference: "Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from #LongCOVID" (day 2 = Dec 13)

https://videocast.nih.gov/watch=52738

See image for agenda including speaker list

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19

Study reveals how #SARSCoV2 alters mitochondria, leading to energy outages and organ failure

> An interdisciplinary #COVID19 International Research Team found that SARS-CoV-2 alters mitochondria on a genetic level, leading to widespread "energy outages" throughout the body and its major organs.

https://www.news-medical.net/news/20231031/Study-reveals-how-SARS-CoV-2-alters-mitochondria-leading-to-energy-outages-and-organ-failure.aspx

Core mitochondrial genes are down-regulated during SARS-CoV-2 infection of rodent and human hosts

https://science.org/doi/10.1126/scitranslmed.abq1533

#SARS2

Press release:
CSPI sues EpicGenetics, maker of test for fibromyalgia, for false and misleading claims

Updated: October 4, 2023

https://www.cspinet.org/press-release/cspi-sues-epicgenetics-maker-test-fibromyalgia-false-and-misleading-claims

@fibromyalgia #fibromyalgia #fibro #fms #fm

@ChrisCPS I hear you Chris!

An eye-opening moment in my coffee life was getting a tour of the Swiss Water Decaf plant, in Burnaby, BC, Canada a while back. Just amazing the process things go through to remove the caffeine while retaining most of the coffee's flavour.

One of the best decafs I've ever had came from Madcap Coffee. They don't always have it in stock tho - very limited.

https://www.madcapcoffee.com/coffee

Sympathetic article:

Lisburn man with ME urges Northern Ireland people to take part in new study ( #DecodeME ) into condition

"On one day I might be able to meet a friend or go to a hospital appointment, the next day I would be bed bound"

https://www.belfastlive.co.uk/news/health/lisburn-man-urges-northern-ireland-27757804

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

@tomkindlon @chronicillness @spoonies @mecfs @longcovid
“I hope you feel better soon” is answered with “Oh that’s sweet, but I won’t. This is life with chronic illness.”

They need to hear it. They need to know that sometimes you get sick and you NEVER get better. Ever.

Due to the overwhelmingly positive reaction to our open letter to Cochrane calling on them to withdraw their 2019 review of exercise therapy for 'CFS', we have set up this petition to make it as easy as possible to add your name in support.

Please sign and share.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

? for other disabled folks (esp w ME/CFS): How do you estimate spoons available for the day? Or do you?

I need a better way than “Do things until PEM, then one thing less.” Timeboxing stuff pomodoro style kinda helps but doesn’t factor how much I must:

• move my arms
• sit up
• stand up
• walk
• climb stairs
• lift >5 lbs
• focus mentally
• do emotional work
• travel
• be in crowds
…or combinations of above

ANY resource links, tips, recommendations?

#MECFS @mecfs

Using #Mastodon
and the #Fediverse is an act of rebellion in itself.

By being here,
you are contributing to grow an alternative system that is led by the people and for the people, not for profits.

By being here,
you are encouraging a solution to a deteriorating social climate that thrives on outrage and monetization of hate.

By being here,
you are participating to the development of a new system that can slowly build a better world.

Thank you for being here 💚

Seeing a lot of love for this

The Atlantic

What if your body forced you to stop?

People suffering from #longCOVID, ME/#CFS, & other energy-limiting chronic illnesses, experience #fatigue that is different from everyday tiredness—& they’re often treated not just with disbelief but with contempt. *Ed Yong* speaks with Hanna Rosin on why so many experience indifference to a debilitating condition

Podcast & transcript
https://shorturl.at/hxSTW
@longcovid @mecfs #mecfs
#spoonie

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New from France:

Consequences of sarcolemma fatigue on maximal muscle strength production in patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

Free:
https://clinbiomech.com/article/S0268-0033(23)00186-9/fulltext

"post-exercise sarcolemma fatigue...could be the cause of muscle failure"

#MEcfs #CFS

@mecfs

From MEAction UK:

"Response to the Guardian article 11 July 2023"

"MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023. The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focused on treating ME with their pet therapies."

Read more here: https://www.meaction.net/2023/07/11/meaction-uks-response-to-the-guardian-article-11-july-2023/

#MEcfs #PwME #MyalgicEncephalomyelitis