Başar SARIKAYA, MD, DABR

#TeachMETreatME #neuroSjogrens #autoimmuneencephalopathy Opinions are my own!

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

@NeurologistMom Sometimes I feel so short of being those. You are the one who has carried so much for our daughter, quietly and completely. Thank you for your love, your patience, and for holding us together.

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

Bittersweet moment as I get closer to the end of an era in my life.
I never taught radiology through mnemonics, cheat codes, memorized algorithms, guidelines, or classification schemes which may become obsolete some day. I am glad that I might have accomplished it to some extent.

[Neurologist Mom @NeurologistMom]

Herpes reactivation is a critically important issue that many clinicians still ignore. I hope HHV-7 will be one of the next viruses seriously investigated. When HHV-7 antibodies were found in my daughter’s CFS workup, my colleagues dismissed them as an “innocent” finding and said they could not possibly explain her 50 to 100 daily focal seizures. After I started valacyclovir, the seizures “magically” stopped.

[Neurologist Mom @NeurologistMom]

“Iatrogenic PTSD: When Healthcare Becomes the Source of Trauma”

This is the term I suggest for describing what many chronic complex disease patients develop after repeated dismissal, invalidation, and gaslighting by healthcare professionals.

[U.S. Surgeon General @Surgeon_General]

Millions of Americans live with infection-associated chronic conditions and illnesses, including long COVID, ME/CFS, and Lyme disease–associated chronic symptoms; conditions that are often debilitating, misunderstood, and under-recognized.

In a new Clinical Infectious Diseases viewpoint, CAPT Iskander and Dr. Haridopolos of the Office of the U.S. Surgeon General call for making these “invisible illnesses” visible through patient-centered care, stronger surveillance, multidisciplinary management, and continued research investment.

The article emphasizes the importance of validating patients’ lived experiences while advancing evidence-informed care to improve outcomes for people living with these complex chronic conditions.

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

I concur...

[james hawkins @james406]

110-year-old Turkish grandma shares her secret to a long life:

"i never once used Microsoft Teams"

[Neurologist Mom @NeurologistMom]

“Severe people may hold answers to Long COVID. They must be included in research.”

Today is Long COVID Awareness Day, and severe Long COVID patients are still mostly excluded from studies. Here is the article I wrote for @TheSickTimes

https://t.co/AtOuQkSS7L

[Neurologist Mom @NeurologistMom]

We have great news from @putrinolab🙏🏻 They just submitted a paper about the initial results of a novel device they tested for Long COVID related cognitive impairment!
Thank you for sending this video message, Dr. Putrino. 🙏🏻 #LC2026HopeVideos #LongCovidAwarenessDay2026

[Neurologist Mom @NeurologistMom]

“Why is their suffering acknowledged enough for euthanasia but not enough to fund clinical research?”

Lauren’s parents, after her death by euthanasia in 2024.

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

⬇️

[Michael R Scoma MD @DrMichaelScoma]

🔷After treating thousands of patients with chronic illness, here’s the real reason most never get better:

The medical system isn’t designed to produce recovery.
It’s designed to maximize throughput.

Once you see that, everything clicks. Let me explain 🧵

[Neurologist Mom @NeurologistMom]

Medical PTSD is far more common in the chronic complex illness community than people realize. Medical gaslighting was not taught in medical school in my time, and it urgently should be, given the harm it causes to the most severely ill patients.

[Neurologist Mom @NeurologistMom]

That’s not new to me. I have been consulted on many patients who developed Alzheimer’s disease shortly after COVID infection, most recently a very young patient with ALS and frontotemporal dementia after COVID.

https://t.co/I8sGW5Crvh

[The Sick Times @thesicktimes]

People with the most severe #LongCOVID symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. They are not beyond the reach of science; they are where real progress begins. https://t.co/X8og331R6K

[Neurologist Mom @NeurologistMom]

We urgently need to include severe Long COVID patients in research. They are already invisible to many, and sadly to research as well. Excluding them may cost us understanding the disease; they hold the answers to Long COVID.

I wrote for @thesicktimes

https://t.co/AtOuQkSS7L

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

Twenty-four years old. Lung adenocarcinoma with new brain mets. No family history of Ca, never smoked. Symptoms started after a ‘cold’ two years ago. That’s not a study you can read, close, and quietly move to the next.

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

@drsevdasarikaya @darulaceze 👏🏼🙏🏻

[Neurologist Mom @NeurologistMom]

PLEASE Long COVID Researchers

“Please don’t make judgement calls about what is relevant. If we say it’s relevant to our LC, then it is, and you should want to hear more.”

Please listen to your patients.
Please hear your patients.
Please respect the access you have to our bodies.
Please respect every symptom.
Please remember how you feel after a couple of nights of bad sleep in a row.
Please remember that we may have multiple sleep issues, including insomnia, nightmares, chills and sleep apnea, not for a couple of nights, but going on 5 years. Lack of sleep may affect our mood and ability to think straight or speak effectively.
Please imagine that you can no longer do your favorite physical activity such as dancing, yoga, gardening, long walks, weightlifting, or even sex, not only because you don’t have the energy, but you know if you do them, you will be sick for 3 days afterwards.
Please imagine being young and having marked memory loss.
Please imagine not being able to breathe from simply walking up some stairs.
Please remember that we have LC through no fault of our own.
Please understand that this illness can make us crazy.
Please do not judge us for what our brains are doing to us. LC gives us depression and anxiety.
Please imagine throwing up every day for 3 months.
Please remember that everything hurts, and we don’t know why or how to improve it. Some of us are people who once had amazing pain thresholds. Pain wears us down. It affects our work, family, and social lives because we cannot do what we used to do.
Please remember to ask us what we have tried and if it made any difference to our recovery. We are all trying our hardest to treat ourselves holistically as we await answers from the medical and research community. We need you to know we are trying to get better.
Please remember that some of us were in perfect health before getting COVID.
Please imagine yourself going through your day wearing a weighted blanket. Imagine taking it off and feeling even worse.
Please think about what it would be like to have a chronic illness that is, thus far, not treatable. You are just stuck with it.
Please imagine knowing that your brain does not function the way it used to. Imagine going to work with that brain.
Please imagine thinking that what is wrong with you may be permanent.
Now, please imagine people not believing that all of this is happening to you.
Please remember we hold the key to the answers to all of this.
Please close your eyes and imagine you have Long COVID.
Please do not lose your passion for medicine and your patients. We need you.
Please do not let millions of us suffer with LC. We do not want to lose hope for our future.

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

@NeurologistMom 🙏🏼🙏🏼🙏🏼❤️❤️❤️

[Neurologist Mom @NeurologistMom]

Long COVID vs. PVS (Post-Vaccine Syndrome)

From the recent preprint of @VirusesImmunity ‘s study

Long COVID – Common Symptoms
•Brain fog
•Loss of smell or taste
•Shortness of breath
•Fatigue
•Memory problems
•Trouble speaking

PVS – Common Symptoms
•Burning sensations
•Nerve pain (neuropathy)
•Numbness

Clustering Revealed Three Main Symptom Groups
1.Neurological group – Predominantly seen in PVS
2.Multi-system group – Mostly associated with long COVID
3.Mental health & sleep group – Also primarily long COVID

[Başar SARIKAYA, MD, DABR @basarsarikayamd]

@NeurologistMom 🙏🏻❤️