Neurologist Mom

New study shows that functional MRI in patients with Long COVID and ME shows reduced activity in brain regions associated with cognition, which may contribute to cognitive difficulties such as

✔️ MEMORY PROBLEMS
✔️ DIFFICULTY CONCENTRATING
✔️ SLOWER THINKING

"Advocates[...]warned against “mildwashing,” or the tendency to focus primarily on less severe cases"

Very important and good article about the harmful exclusion of the most severely affected from scientific trials & undertakings.
@neurologistmom.bsky.social
#ethics #mecfs #longcovid #mcas #pots

A young person lies in bed in a dark room, with an eye mask over their face and earplugs in. The text reads, "The Sick Times. Severe people may hold answers to Long COVID. They must be included in research. By Sevda Sarıkaya."

"The most severely affected are not on the margins of Long COVID; they represent its truest and most revealing form. The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent." - Sevda Sarıkaya, Severe people may hold answers to Long COVID. They must be included in research.

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.

Read more from @neurologistmom.bsky.social: bit.ly/49TMXdz

Justin's Long Covid Story - Canadian Covid Society YouTube video by Canadian Covid Society

2/
When we made this 🇨🇦 Canadian short film about #LongCOVID, we were keenly aware that Justin's story was just the tip of the Long COVID iceberg -

Justin's Long Covid Story:

youtu.be/p8HPBmtHzEg?...

🙏🏻♥️

Thank you for sharing.
Sevda Sarikaya.

Thank you for sharing.
Sevda Sarikaya.

Thank you for sharing.
Sevda Sarikaya.

Thank you for sharing.
Sevda Sarikaya.

Thank you for inviting me to share my perspective🙏🏻
Sevda Sarikaya.

Thank you for sharing.
Sevda Sarikaya.

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.org

thesicktimes.org/2026/01/13/s...

Personal opinion and an observation of mine: if a drug already has the property of crossing the blood–brain barrier (like most neurological medicines), it probably means it would harm the severe LC patients the most. NOT A MEDICAL ADVICE

A new study sheds light on why people with ME/CFS feel worse after activity.

“Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in ME/CFS, where the body seems stuck in “high alert” mode.” Lucinda Bateman, M.D.

My angel, with all the pain you carry, I admire your resilience, your wisdom, and your faith in me and your dad♥️ Even in agony, you stood yesterday for a minute before nearly fainting, just to feel normality. You are my hero. I’ll do all I can to help find a cure. I promise.

Everyone ignores this huge problem striking families with LC kids, already devastated. If these extremely vulnerable children were taken from their parents “by mistake,” they’d lose the essential care they need to survive. Even the hint of this is terrifying. This is inhumane.

Finding this letter in my mailbox gives me hope. I’ve served on three NIH RECOVER-TLC committees and I’m ready to do more, but please keep listening to us. Don’t include only parents of mild LC children. We, as parents of very severe ones, live in hell and need your support

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.

Big🙏 to @neurologistmom.bsky.social for the ALT text

Left img:

"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..."

Update: She posted this on X. She is home now 🙏🏻

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

Bsky comment from Sarah Boothby states: "Lawyers already on board Julie - please delete the call"

I believe legal representation has already been secured.

🙏🏻

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

My Long COVID fam, please help
Isla’s mom was arrested, accused of causing her ME/CFS daughter’s death
She has another 15yo daughter with ME who needs her. They live in UK.
She is an incredible mom. I am crying
Any UK lawyer to take the case pro bono. Any journalist to cover this. Please help🙏🏻

My teen daughter had a horrible reaction to LDN. Please keep that in mind. She lost 30 pounds due to the gastroparesis it caused, along with some other issues you can see below ⬇️

I found this very informative as a result of my LDN experience survey on LC patients. So far, there are 129 participants. Among those who benefited from LDN, the most improved symptoms are:
1. Pain (35.7%)
2. Fatigue (34.1%)
3. Brain fog (34.1%)

I'm so proud of my husband @taltocd.bsky.social for working so hard to help other families like ours get access to support through complex medical journeys. It's a hard road and patients and their caregivers deserve better.

*Adolescent: 11, sorry for the extra 1 :)