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Neurologist Mom @neurologistmom.bsky.social · 3d

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.

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Neurologist Mom @neurologistmom.bsky.social · 8d

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

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Reposted by Neurologist Mom

Christophe Veltsos @drinfosec.bsky.social · 25d

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..."

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.

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Neurologist Mom @neurologistmom.bsky.social · Aug 1

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

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Reposted by Neurologist Mom

sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

sarah boothby @swastrosarah.bsky.social · Jul 31

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

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Reposted by Neurologist Mom

Michiel @murtoz.bsky.social · Jul 31

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!!!

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Reposted by Neurologist Mom

baszkom.bsky.social @baszkom.bsky.social · Jul 31

I believe legal representation has already been secured.

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

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Neurologist Mom @neurologistmom.bsky.social · Jul 31

🙏🏻

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Reposted by Neurologist Mom

sarah boothby @swastrosarah.bsky.social · Jul 31

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

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Neurologist Mom @neurologistmom.bsky.social · Jul 31

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🙏🏻

sarah boothby @swastrosarah.bsky.social · Jul 31

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

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Neurologist Mom @neurologistmom.bsky.social · Jul 19

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 ⬇️

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Neurologist Mom @neurologistmom.bsky.social · Jul 19

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%)

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Reposted by Neurologist Mom

Michal Caspi Tal, PhD @immunofever.bsky.social · Jul 16

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.

Tomer Tal @taltocd.bsky.social · Jul 16

Dealing with a child's chronic diagnosis is hard enough. Then you take on a second job of managing their health. Families deserve better. We're excited to Introduce vela-health.com, a platform to bring clarity to the chaos of chronic illness. Sign up for early access!

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Neurologist Mom @neurologistmom.bsky.social · Jul 16

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

Neurologist Mom @neurologistmom.bsky.social · Jul 16

The rest is in the next post(3/4)

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Neurologist Mom @neurologistmom.bsky.social · Jul 16

The rest is in the next posts (2/4)

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Neurologist Mom @neurologistmom.bsky.social · Jul 16

The rest is in the next posts (1/4)

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Neurologist Mom @neurologistmom.bsky.social · Jul 16

My dear Long COVID fam and big PAIS family, you know there’s no one we can rely on but each other. We must stick together and fight for what we deserve. Here’s the interim results thread from my LDN survey. Please share the survey from the quoted tweet so I can update 🙏🏻❤️

Neurologist Mom @neurologistmom.bsky.social · Jul 15

I created a survey on LDN use in Long COVID. If you’ve tried it, please fill it out. I’ll share anonymized results later. My daughter’s experience wasn’t good, but I still filled it out, we need to learn from all cases. Please share to reach more people🙏🏻

docs.google.com/forms/d/e/1F...

LDN Experience Survey for Long COVID Patients

Purpose: This survey collects personal experiences from Long COVID patients who have used Low Dose Naltrexone (LDN) to share with others interested in hearing about different individual experiences. Y...

docs.google.com

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Neurologist Mom @neurologistmom.bsky.social · Jul 16

If you started it after your Long COVID diagnosis, please go ahead and fill it out. Thank you 🙏🏻

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Neurologist Mom @neurologistmom.bsky.social · Jul 16

Thank you so much🙏🏻

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Neurologist Mom @neurologistmom.bsky.social · Jul 15

Thank you for taking the time to share your experience. 🙏🏻

Neurologist Mom @neurologistmom.bsky.social · Jul 15

This one was just for Long COVID patients, but I’m really curious about ME experiences as well. I’ll prepare a separate one for ME later.

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Neurologist Mom @neurologistmom.bsky.social · Jul 15

I created a survey on LDN use in Long COVID. If you’ve tried it, please fill it out. I’ll share anonymized results later. My daughter’s experience wasn’t good, but I still filled it out, we need to learn from all cases. Please share to reach more people🙏🏻

docs.google.com/forms/d/e/1F...

LDN Experience Survey for Long COVID Patients

Purpose: This survey collects personal experiences from Long COVID patients who have used Low Dose Naltrexone (LDN) to share with others interested in hearing about different individual experiences. Y...

docs.google.com

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