
#MyalgicE Patient Advocacy 4 better treatment & cure. UR life/dreams are gone before ur eyes! Federal Advocacy Research Education & Funding #Dysautonomia
USA
Joined July 2007
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Its ME Matina retweeted
What if Lyme disease could be detected earlier, when it matters most? New study shows #LymeSeek significantly outperforms standard 2-tier testing. lymedisease.org/new-data-lym…
Its ME Matina retweeted
Chronic Illness Vlog: A Month in My Life with ME/CFS - I stopped taking sirolimus/rapamycin (for now), my usual fall relapse began (& mysteriously ended), and I was able to enjoy my son's wedding! Rollercoaster of ups & downs, plus what helps me.
youtube.com/watch?v=VENEeOKk…
Its ME Matina retweeted
Two new webinars from Denise Lopez- Majano & Kim Moy!
"Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET.
“Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET.
Registration coming soon!

ALT Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 pm Et "Things We Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom. November 15 3 pm Et
Its ME Matina retweeted
I really wish people would stop talking about POTS like it’s just a heart rate issue.
If that’s all you know about it, that’s fine, but maybe learn what the autonomic nervous system actually controls.
Tachycardia is one symptom of POTS, it’s not the whole condition.
Its ME Matina retweeted
It's called Mast Cell Activation Syndrome (MCAS). The most frequent comorbidity of #MCAS is #POTS. Both POTS/#dysautonomia and MCAS are pathophysiologic mechanisms of #LongCOVID.
COVID-19 linked to increased risk of six allergic conditions in children and adults:
atopic dermatitis, asthma, food allergy, rhinoconjunctivitis, medication allergy, urticaria.
emjreviews.com/allergy-immun…
Its ME Matina retweeted
My #MECFS Scandal explainer has just hit half a million views on YouTube.
I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many.
Thank you to everyone who shared it!
Here’s the trailer👇
Its ME Matina retweeted
📣Big news from Solve’s research team re: an upcoming funding opportunity for researchers studying #MECFS, #LongCovid, & associated conditions! Stay tuned for more info on October 6 & click this link to learn more about our Ramsay Research Grant Program.
ow.ly/HK8150ZUEtq
Its ME Matina retweeted
Tick Infections Behind the Scenes in #MECFS #Fibro & Other Chronic Illnesses - Many of us also have #Lyme or other tick infxns that can go undiagnosed for yrs, causing joint pain, neurological symptoms, brain fog & more. Why, what to do & the latest info: livewithcfs.blogspot.com/202…
Its ME Matina retweeted
IVO-21 – A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? #MECFS healthrising.org/blog/2026/0…
Its ME Matina retweeted
❓ This question always comes up, even from my colleagues who specialize in #POTS and #dysautonomia: Why do you recommend such an extensive workup for patients?
✔️ The short answer is: So that I don't miss things!
🩺 Example: Patient today with #POTS and #migraine and, surprisingly, no GI symptoms at all. My extensive workup revealed 2 positive antibodies for celiac disease despite the patient being on gluten-free diet for years!
‼️ Take-home message: If you don't look for it, you won't find it.
Its ME Matina retweeted
Congress voted to delay thru Dec. 11 a rule that lets political appointees cancel federal grants, incl. active clinical trials, overriding the peer review process. We fought for this delay, now ask Congress to end the rule permanently:
solvecfs.quorum.us/campaign/…
#MECFS #LongCOVID
Its ME Matina retweeted
“Wir erhalten jede Woche zahlreiche neue Anfragen und können die Zahl der schwer und komplex erkrankten Menschen kaum noch bewältigen“,
Dr. Volker Brenn, Kölner Allgemeinmediziner und Immunologe
fordert deshalb u.a. verpflichtende Fort- und Weiterbildungen.
Assistierter Suizid wegen #MECFS
„Kathis Tod soll nicht umsonst gewesen sein“ – Charity-Event in Köln
rundschau-online.de/koeln/me…
Its ME Matina retweeted
The near-term route to solving Long COVID & ME/CFS likely won’t be one major mechanism breakthrough. It will be identifying solid patient subgroups, then tracking which drugs work in each.
Autoimmune drug responders = autoimmunity
Antiviral responders = replicating viral persistence
Blood volume med responders = low blood volume
Abilify responders = neurotransmitter issues
There will be overlap and it won’t be perfectly clean-cut, but this is roughly how I think it will look.
To do this, we need open-ended databases tracking patients, drug response and omics/blood data at scale.
I think this becomes viable in the next 2–3 years.
It’s what gives me immediate hope as a patient, and what we’re working towards at @amaticahealth.
The key is scale. Once a signal emerges in one subgroup, it can help everyone else in that group.
Its ME Matina retweeted
“Accelerating Severe ME/CFS Research”
(August 6, 2026) by the Solve ME/CFS Initiative @PlzSolveCFS
solvecfs.org/accelerating-se…
#MEcfs #SevereME
It’s really sad but understand lc/me advocacy strategy. But still struggle that #pwme are left to suffer more vs LC? I don’t understand why we don’t have same funding& treatment now vs after lc🧐in many ways
Its ME Matina retweeted
The incident involving my home address was separate. We now know who the person was: a father desperately trying to find care for his seriously ill child. He had hoped the conference might somehow give him access to doctors or treatment, and had formed a very negative picture of us based on things he had read online, including claims he had understandably assumed were true.
Once emotions had settled, we spoke calmly and I showed him the facts and the reality: there is no profit being made here, this is a very small team lacking funding, and a scientific conference cannot provide individual access to care or treatment. His perception of us turned out to be very different from the reality. For me, the matter is closed.
But it was a powerful reminder that words matter. What we say about people online can become someone else’s truth.
And to avoid any further misunderstanding: there was no death threat.
4/
Its ME Matina retweeted
Royal Decoration for ME patient Anil van der Zee | NPO Radio 1 / NOS News | 28‑08‑2026 (with subtitles)
Yes, to the by journalist @Zurhake suggested ME-ologists please!!
youtu.be/RGtOD5S5BYU?is=WlxZ…
#pwme #myalgicE #millionsmissing #severeME
Its ME Matina retweeted
For anyone on instagram, the Mayor of Amsterdam has posted about meeting Anil to give him his knighthood.
In case you'd care to comment.
Burgemeester Femke Halsema deelt haar belangrijkste momenten van augustus en haar ontmoeting met de ME community en mij staat vooraan.
Laat even met een bedankje of een oproep tot meer actie vanuit de politiek van je horen.
instagram.com/p/DcvAzkdFy5J/…
#pwme #millionsmissing






















