Okay, weird question: does being physically cold make anyone else feel depressed or anxious?
Sometimes I get super sluggish and feel suddenly depressed, and warming up by sitting outside or taking a shower seems to help. I know both those things can positively impact mood in general, but it feels related to temperature... But not season (it's summer here, I'm just in AC).
Mapping cerebral blood flow in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and orthostatic intolerance (OI)
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06954-w
"CBF (Cerebral Blood Flow) is reduced in ME/CFS and OI alone and having both conditions comorbidly amplifies CBF reductions. Therefore, observing CBF changes in ME/CFS with and without OI may be important in monitoring disease severity."
#MEcfs #PwME #POTS #Dysautonomia #OrthostaticIntolerance #CBF
From Medscape:
"Where Is the Medical Home for Postinfectious Illness?"
https://www.medscape.com/viewarticle/where-medical-home-postinfectious-illness-2025a1000m05
"Many can trace these symptoms to a specific infection… [but] infectious trigger may not have been confirmed or recognized at the time. They were healthy and active, then they weren’t. Some are severely disabled and can’t work, go to school, or even do simple tasks without feeling depleted and even sicker afterward."
#PostViral #PostCovid #POTS #Dysautonomia #MEcfs #LongCovid #Fibromyalgia
Just watched one of the most interesting and helpful scientific talks, hosted by Dysautonomia International on:
Neurological Mechanisms of Itch and the Connection to Dysautonomia - by Dr Brian Kim, Director of the Mark Lebwohl Center for Neuroinflammation and Sensation at Mount Sinai.
Everyone dismisses itching as if it’s trivial, but this lecture dives into the evolutionary origins (and why it has been well conserved all these years), connections with the immune system and even pain.
Ultimately, our illnesses are often forcefully placed in a single category when they actually connect many different biological systems. E.g. Itching, POTS, MCAS, post viral syndromes, heart arrhythmias… they could be seen as neurological, immunological and more. If you see a neurologist, they’ll say it’s neurological; if you see an immunologist and they’ll say it’s immunological. And they’re both right! But as patients, we understand this as conflicting messages, especially because it seemingly excludes other mechanisms or causes. Medical professionals from different fields need to talk MORE with one another! (I dream of the day when our medical systems are fully integrated and prioritise truly personalised medicine ❤️🩹)
What I appreciated most about Dr Kim’s talk was that he wasn’t bothered about classifying conditions; instead he advocates that scientists discover functional pathways for symptoms and connect them with drugs to accelerate the journey toward successful clinical trials without getting bogged down in definitions of conditions. I.e. prove a drug can make a tangible difference to patients and the illnesses will be validated and recognised in the process. I think most people with ME would especially appreciate this. We have already been waiting many years for not a lot of progress. DecodeME and the new PRIME network could really catalyse this!
The talk gets quite scientific so not sure how watchable it is for the average audience, but I think Dr Kim goes a good job of breaking concepts down to be more easily understood.
If I even think of moving my body in a certain way I burst into flames.
#chronicillness #chronicallyill #chronicillnesshumor #chronicillnessfunny #dysautonomia #autonomic #pots
No. I will not lower the air conditioner for you. Next time bring your winter coat.
#summer #air-conditioning #dysautonomia #autonomic #chronicillnesshumor #funny #haha
Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
Image is screenshot from AMMES July newsletter
#ChronicallyIll #chronicillness #ChronicPain #Spoonie #hiddenillness #invisibleillness @chronicillness
@spoonies
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #IBS @ibs #dysautonomia @dysautonomia #chronicpain @chronicpain @longcovid
#LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Covid has caused an increase in patients with Dysautonomia, a condition which destroyed my quality of life
Yet at Dysautonomia International’s big fundraiser, there was no mask requirement
Worse, they’re publicly stating masks don’t work & quoting the debunked Cochrane study
I’m generally not one to punch down on advocacy organizations because I think we need to fight like heck to lift one another up.
I appreciate that they had HEPA filters, corsi rosenthal boxes and were apparently providing free masks.
But I can’t sit silently when an organization that should be protecting people starts spouting far right rhetoric
What difference does it make if you put masks at the door when you’re telling people they don’t work?
If you’re not leading by example & wearing them yourself?
People look to these organizations to set the tone.
They assume they have our best interests at heart.
Dissuading people from masking during a pandemic is not advocacy. It’s not patient centred. It’s not leadership.
We’ve known for years that Long Covid often causes Dysautonomia/POTS.
There’s been such a significant increase in patients that there aren’t enough doctors to treat them.
Many have lost everything to the condition and are now fully disabled.
Yet this conference will end up causing more disability.
It will end up creating more patients when what we desperately need to do is stop the spread of Covid and start helping those who’ve been disabled already.
The best way to do that is to wear a mask.
Their post says: “there is insufficient evidence to show that mandatory masking in a public setting does anything to reduce COVID risk
Please read this Cochrane review, considered to be the definitive unbiased analysis of this important public health question”
That’s a lie.
They say that people feel “passionately” about the subject but then absolve themselves of any responsibility to actually protect the attendees.
They claim that doctors and Long Covid researchers agreed there was no need to mandate masks at the event.
I will be honest, I wish every indoor event and conference had mandatory masking.
I’m sick of people dying and becoming disabled from a disease we know how to prevent.
But I also recognize that almost no one is willing to require masks because we’re cosplaying 2019 “normal”
Hospitals, medical conferences and events for disabled people need to be the exception.
They need to do better.
They need to realize that they have a duty to do no harm.
They have a responsibility not to make sick people even sicker.
If they’re not willing to do that, the bare minimum they can do is not deride those who do take precautions.
They could encourage masking rather than spread lies that they don’t work.
They could refrain from sharing junk science that’s been largely debunked & discredited
We know masks work.
We know respirators work even better.
We know two way masking is better than one.
We know asymptomatic transmission is a very real threat.
We know all of this, and yet “advocacy” organizations are choosing to ignore it.
We have to push back on this. Over 400 million people have Long Covid. Many of them also have Dysautonomia.
Another Covid infection could wipe out whatever baseline they have left.
We need leaders and advocates to set the tone.
We need them to be honest about transmission
Above all else, we need them to stop the spread of Covid.
We need them to say “enough” to preventable death and disability.
We need them to wear masks and encourage others do the same.
When you know better, you do better
#longcovid #COVIDisAirborne #CovidIsNotOver #wearamask #maskswork #disability #ableism #eugenics #pots #Dysautonomia
Chronic Illness Humor Funny
eladnarra
ahimsa
JB 🐎 
Tom Kindlon
Broadwaybabyto