Brian Shuell @Bshuell@qoto.org

#Introduction I have severe #ME made significantly worse by advice based on the old 2007 NICE guideline. I am mostly bedbound and spend my time raising awareness and making videos. This short explainer about #ME is the last one I made.

I also play Chess and Words with Friends to pass the time.

#MECFS #CFS #MyalgicE #PwME #ChronicFatigueSyndrome #MyalgicEncephalomyelitis

"Symptoms made worse due to physical or cognitive exertion (N = 1534)" in Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)

From:
"Assessment of Post-Exertional Malaise (PEM) in Patients with #MyalgicEncephalomyelitis (ME) & #ChronicFatigueSyndrome (#CFS): A Patient-Driven Survey" (2019) by a Leonard A. Jason team
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MEcfs #MyalgicE #PwME #MEeps @mecfs #PostExertionalMalaise #PostExertionalNeuroimmuneExhaustion #PostExertionalSymptomExacerbation #PEM #PESE

Rebirth. Since getting #mecfs I've not been more than a 100 metres from home or a vehicle in 2 years. Surprisingly it's not been the end of the world for me. It's a different perspective & good moments like this morning are big wins in the lottery of life. #photography #LandscapePhotography #mecfs #disability

Highlights Baroness Scott speaking about ME/CFS during the Long Covid debate in the House of Lords 17 Nov 2022

#MECFS #CFS #MyalgicE #PwME #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #MECFSAwareness #LongCovid #Covid19

#Covid19 #prevention

"‘Immunity debt’ is a misguided and dangerous concept
There is no evidence that an individual is worse off for having avoided earlier infection"

"In this case, misinformation risks promoting the unfounded assertion that infections are clinically beneficial to children, as well as feeding the revisionist narrative that Covid measures did more harm than good."

https://www.ft.com/content/0640004d-cc15-481e-90ce-572328305798

New! Now published in the latest issue of 'Brain' >> our article on why it is dangerously wrong to attribute postural tachyardia syndrome (POTS) to psychogenic processes.

Or in plain language:

This symptom of #MECFS and #LongCovid reflects central neurological dysfunction...it is not "all in the mind".

#Psychology #medicine #pwME

https://academic.oup.com/brain/article/145/11/e111/6713530

New Open Medicine Foundation study on #neutrophils and #MCFS announced:

https://www.omf.ngo/ron-davis-new-neutrophil-study/

@mecfs

Congratulations to the Patient-Led Research Collaborative on #longcovid, which just awarded $4.8 million to projects chosen by patients - the way it should work.

Projects will look at microclots, T cell exhaustion, post-exertional malaise (crashing), and more. https://patientresearchcovid19.com/press-releases/

📢New Neutrophil #ME study from The Legend that is Prof Ron Davis and OMF

⚪Neutrophils are a type of white blood cell in the immune system

🔬Other inflammatory diseases like IBD, Alzheimer's and MS have Neutrophil dysfunction

🔎Watch this space
https://www.omf.ngo/ron-davis-new-neutrophil-study/

Hello to all my fellow #LongCovid and #mecfs advocacy orgs and advocates here. Brief intro. I'm a black long covid advocate from the first wave and mom of a genius long Covid kid. Still recovering. POTS, MCAS, EDS, and who knows what else. I'm always fighting the good fight in disability and equity often with just my keyboard. I'm knee-deep in policy, legislation, research and writing. Feel free to follow me. #longcovid19 #longcovidKid #longhauler

@b_m_hughes

Consistent with the NIH's findings that the infection crosses the BBB sometime after symptoms resolve. According to Chertow, it's just sitting there out in the open totally unimpeded, replicating. 'Unprecedented' is the word used, if I remember correctly, tho I might be off a bit in phrasing.

https://videocast.nih.gov/watch=45296

Skip ahead to the panel @ 33:50. Gets to the heart of the matter fairly quickly.

Huge study showing 62% more likely chance of developing diabetes after #Covid_19 (compared to if you don’t get covid), especially in the first 3 months. Even in kids! #WearAMask

https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-022-02656-y

@LongCovidAdvoc Hello! US here, but I got #COVID at the beginning of the first wave (late Feb/early Mar 2020) and had pretty severe symptoms, but went untested due to lack of awareness.
I've been suffering from #LongCOVID ever since and have suspected #MECFS for a while now, but in March of this year, my ME became severe and I was homebound for six months. I'm a little better, but I'm still struggling to get through the day (I was in bed until dinner on Saturday 😅)

Seeking advice, particular from comms folks who may be struggling with similar questions:

if you were a small Canadian research institute looking to flee the #BirdSite dumpster fire, what instance would you choose and why? Boosts and suggestions appreciated.

#Communications #Advice #TwitterMigration #NewHere #NonProfit #ClimatePolicy #ClimateChange #Canada #cdnpoli #Research #Journalism #Comms

#Stanford recruiting for #LongCovid study, share widely!

https://redcap.stanford.edu/surveys/?s=LWJ7H4NXM4CJ8WWF

https://clinicaltrials.gov/ct2/show/NCT05576662

Reposted to add #AltText, link to original here:

https://med-mastodon.com/@SethAHoffman/109365414363288369

"Is this what's causing #LongCovid? Brain scans of patients with lingering symptoms show clusters of plaque in areas responsible for tiredness, headaches and cognition."

https://www.dailymail.co.uk/health/article-11452981/MRIs-Covid-patients-clusters-plaques-areas-responsible-tiredness-anxiety.html

"We are failing the many people struggling with long Covid"

Disability campaigner Emerson Wheeler, on the social norms that oppress people living with #LongCovid & #MECFS:

"Internalized ableism — that voice inside your head that asks 'What's wrong with me?...' — is a powerful player in depression and suicidal ideation for disabled & chronically ill people."

We owe it to patients to stop saying "I'm sure you'll be ok"
& to start saying "I believe you. How can I help?"

https://vtdigger.org/2022/11/21/emerson-wheeler-we-are-failing-the-many-people-struggling-with-long-covid/