Just a few hours left: #Freedom #Flotilla #Coalition #boat #Handala on his way to #Gaza with much needed #aid in the face of #genocide .
Crew announces #hunger #strike in case of #IDF #kidnapping !
#Break the #siege, the #illegal #blockade must end!
https://freedomflotilla.org/ff…
https://invidious.snopyta.org/…
Track, boost, rally with #pots or pans whereever is fit, take #responsibility at work, ...!
@palestine@a.gup.pe @israel@a.gup.pe @israel @palestine@lemmy.ml
I’ve started bringing my seat-stick out with me more, as a way *to put up my feet*.
I can feel self-conscious about putting my feet up on another chair.
With my orthostatic intolerance as part of my ME, my body doesn’t like having my feet on the floor for long.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs @longcovid #longcovid @pots #pots
Kleiner Teller für Kerzen, zur Schmuckablage, für Schlüssel ….
But, seriously. We do need this kind of art activism, and we need to evolve it in ways which make it accessible for our communities, including bedlife kin.
If the idea of forming "a band of individuals united in anger and dedicated to exploiting the power of art to end the [Long Covid & Post-Acute Infection Syndromes] crisis" is exciting to you, hit me up illmarks @ nyx mir . com
And, if you or anyone else is doing this work, yes please let me know!
From ME Research UK:
As promised to a commenter last month, we have published an article clarifying the relationship between blood pressure and PoTS (a common ME/CFS comorbidity): bit.ly/potsandbp
Ok I finally set up my @wearlumia head blood flow track yesterday, have been logging data since last and using live mode today
I’m a convert, this is the real deal, every #POTS and #OrthostaticHypotension patient should have this, wow is this helpful!
More on the science behind Lumia here and why POTS and Orthostatic Hypotension patients have messed up brain blood flow and resulting oxidative stress here: https://lumiahealth.com/pages/science
Und noch ein paar Dosen
My weird #POTS symptom of the day- fluctuating between Sahara desert like dry eyes & tissue-required teariness all day. It may be allergies. I hope to wake up to it being fully resolved, whatever it's from.
Dose mit Muster und zweifarbiger Glasur (wird bei gleichaltrigen Freunden gerne für Medikamentenblister verwendet — falls es nicht schon zu viele sind 
)
@brianvastag @spiegelmama Same here. I don't have much of an issue with walking, but I start to feel like crap if I have to stand still. #POTS
also, just wanted to share my yard sale acquisition of a rotary phone 
I figured it out!!!! CentryLink!
Apparently, most of their employees don’t know that you can get a landline without internet service.
But the website chat had someone who could help.
So happy right now!
Time to lower my internet bill to accommodate it 
Hopeful question for the #MECFS community:
In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?
I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.
ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).
It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.
#pwME @mecfs #POTS #myalgicencephalomyelitis #chronicfatiguesyndrome
ME/CFS & Long COVID: What Actually Helps 
3,900+ patient reports ranked treatments by real-world impact. Here’s what worked 
Pacing (Top-rated) IV fluids/electrolytes IVIG & lymphatic drainage Low-dose Naltrexone, NK/LK Compression stockings, antihistamines ADHD meds (brain fog) Melatonin (sleep)
Graded Exercise Therapy (GET) – most harmful
Tailored treatment by symptom cluster = 
#LongCOVID #MECFS #PatientExperience #LDN #IVIG #POTS
Does anyone in Portland know who still does POTS lines?
I thought it was CentryLink but they won’t transfer me to the right person in their company…
My building is wired & I know it has service but my landlord doesn’t know who set it up cause it’s so old!
Living with Chronic Health Issues: My Journey
https://janetannelogan.com/2025/07/19/living-with-chronic-health-issues-my-journey/
Heute gibt es einen neuen Glasurvorschlag für mein Service Nr.2. Jetzt möchte ich noch eine passende Schalenform dazu kreieren. Es gibt halt immer was tun 
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
