Julia MV

A darkened picture of me, a 40ish white woman, leaning against a pillow. Overlaid text reads August 8 is Severe ME Day

August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound.

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On Severe ME Day, my hope is for recognition that this is a humanitarian crisis on a massive scale.

I hope everyone aware that this is happening will commit to demanding a commensurate response from government, industry and charitable giving.

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This day is always extremely difficult every year. It’s Severe ME day. This disease has been the most difficult thing I’ve ever had to face in my life, and I’ve faced a lot.

We remain one of the least funded diseases by disease burden, if not the least.

Having a severe form of ME is horrifying.

All academic institutions will soon realize we are in this together, facing an autocratic ruler who wants to destroy academia, science, and public health (together with media and courts - pick up a history book).

There is only one solution - stand up, speak up, and, critically, collective action.

A purple and teal ombre image has blue and black text that says: “Dealing with Severe ME after COVID-19? tips for living with severe myalgic encephalomyelitis (ME), including: • understanding common symptoms • tips for managing your energy • finding care & support • resources for patients and doctors The footer reads, "Long COVID Essentials, www.tiny.cc/LCE. A series by The Sick Times x Long COVID Justice."

Today is Severe ME Awareness Day, and we’re sharing our explainer about Severe ME.

Highlights in thread, and check out the full resource at longcovidjustice.org/severe-me

This is part of the Long COVID Essentials series by @longcovidjustice.org + @thesicktimes.bsky.social

Great information and recommendations re: severe ME in the below thread

As we head into the 11th #COVID wave in the US, predicted to peak in mid-September, wanted to reshare these vital info resources in English and Spanish from @thesicktimes.org & @longcovidjustice.org on #COVID19 and #LongCOVID

YouTube video by Rehabilitation Science Research Network for COVID Julia Moore Vogel - International Forum on COVID Rehabilitation Research

Here's a recording of a talk I gave in April re: rehabilitation and LC.

This was the first time I was asked to intentionally meld research data & personal experience

Thanks to @uoftcovidrehab.bsky.social for inviting me & for hosting an almost entirely masked audience!

youtu.be/6wPHa1eZ8eU?...

Favorite quotes:

"I often feel like I have nothing left to say, beyond: it sucks it sucks it sucks, the end."

"I’ve survived it, in large part, because of friends with severe ME — people I’ve never met in person, many of them still far too sick to speak or move." ❤️‍🩹

'Long Covid Patients Can Sign up for Remote Clinical Trial Notification, Announces CareEvolution'

'At-home participation in a study by Scripps Research and Schmidt Initiative..'

“We need aggressive, rapid efforts to turn the tide on this very difficult condition"

firstwordpharma.com/story/5986243

extremely excited about this – the Scripps team, led by @julialmv.bsky.social, is amazing!

Study finds brainstem reduction & deformation in #LongCovid patients aged 20-50. They found cerebrospinal fluid (CSF) flow velocity is significantly reduced, & deformities in the 4th ventricle & cerebellar peduncles, suggesting impaired CSF dynamics. https://medrxiv.org/content/10.1101/2025.04.08.25325108v1 1/

🚨🧵 by @ahandvanish.bsky.social on Twitter:

"Study finds brainstem reduction & deformation in #LongCovid patients aged 20-50...
They found cerebrospinal fluid (CSF) flow velocity is significantly reduced..."

Full thread:
threadreaderapp.com/thread/19513...

Where Pi Equals 4 and Circles Aren’t Round (Gift Article) In the world of taxicab geometry, even the Pythagorean theorem takes a back seat.

If you missed my New York Times series, "Math, Revealed", here are free gift links to it -- no paywall 🕺

www.nytimes.com/interactive/...

Daily steps and health outcomes in adults: a systematic review and dose-response meta-analysis Although 10 000 steps per day can still be a viable target for those who are more active, 7000 steps per day is associated with clinically meaningful improvements in health outcomes and might be a mor...

What's the optimal number of steps of physical activity this is associated with multiple (9) favorable outcomes?
The largest, systematic review of 57 studies, 35 cohorts.
7,000 steps is clinically meaningful, benefit also seen for 4,000 steps cf 2,000 steps
thelancet.com/journals/lan...

YouTube video by SolveME ADDRESS-LC Trial: Studying Impact of Bezisterim on Brain Fog & Fatigue in People with Long Covid

Solve ME: 'ADDRESS-LC Trial: Studying Impact of Bezisterim on Brain Fog & Fatigue in People with Long Covid'

'The ADDRESS-LC trial was designed to assess the potential impact of bezisterim on cognitive impairment/brain fog and fatigue..'

www.youtube.com/watch?v=-mMg...

Tweet from Brian Fog @useless_priest People with severe ME, a condition practically no one is really aware of, live in permanent solitary confinement and in physical and mental torture. He’s quoting a post from Feran @immathatkokujin • Jul 9 What's a fact that sounds fake but is 100% true?

The UN defines solitary confinement as torture when it exceeds 22 hours a day for more than 15 days.

Many people with severe ME are years or even decades into that level of isolation.

It’s a humanitarian crisis.

Characteristics and impact of Long Covid: Findings from an online survey Background Long Covid is a public health concern that needs defining, quantifying, and describing. We aimed to explore the initial and ongoing symptoms of Long Covid following SARS-CoV-2 infection and...

A 2022 paper that studied rest & #LongCOVID presentation found, "belonging to the more severe multisystem cluster was associated with… inadequate rest in the first two weeks of the illness.”

journals.plos.org/plosone/arti...

✨Yet this guideline suggests if you want to avoid LC, moar exercise!✨

"Acknowledge [others] feelings while educating them about [their loved one's condition].
Hold family meetings to adjust expectations & responsibilities during difficult periods.
Use hopeful but realistic language about the future"

batemanhornecenter.org/wp-content/u...

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This advice for helping kids with ME, Long COVID, etc is great for all ages:

"Create a judgment-free space for [the person with LC] to express symptom changes & limitations.
Develop simple check-in systems: "On a scale of 1-5, how is your energy today?"

batemanhornecenter.org/wp-content/u...

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RFK Jr. Postponed A 'Woke' Preventive Health Meeting — And It Can Impact All Of Us Experts worry about its impact on screenings and health care for all Americans.

“I believe this is why the [US Preventive Services Task force] is being targeted, because it is paying attention to health inequities and racism’s harmful effects on health.” - Dr. Oni Blackstock

I spoke with Jillian Wilson of HuffPost about the RFK Jr.'s threat to the existence of the USPSTF.

This is such a great interview!

Highlights include:
the joys of collaborating with people with lived experience,
the excitement of seeing results of rigorous trials (even though results have been mostly negative), and
that across the field, we're all on the same team

Fluids/electrolytes (3053 | 1.0e-171 | 68.6%)- Pacing (803 | 7.1e-122 | 75.2%) Compression stockings (952 | 6.3e-77 | 62%) Antihistamines (2982 | 1.3e-67 | 51.6%) Nattokinase/Lumbrokinase (905 | 9.9e-38 | 49.9%)-Low-Dose Naltrexone (951 | 2.2e-37 | 49.4%)• Beta Blockers or Ivabradine (1129 | 2.5e-34 | 47.1%)- Melatonin (987 | 2.3e-23 | 43.3%)- Other select MCAS treatments (1131 | 1.8e-17 | 39.7%) Intravenous/Subcutaneous Immunoglobulin (91 | 6.5e-13 | 58.2%)- Vitamin B-12 (1505 | 1.5e-12 | 36%) Manual Lymphatic Drainage (97 | 6.1e-12 | 55.7%)- Rx Anticoagulants and/or Rx Antiplatelets (270 | 2.3e-11 | 43.7%) ADHD Stimulants (Rx) (327 | 1.0e-10 | 41.6%)- Maraviroc (58 | 1.3e-08 | 56.9%) Mestinon (251 | 1.3e-08 | 41%) Coenzyme Q10 (1779 | 1.7e-08 | 33%) Vagal Nerve Stimulation (132 | 4.7e-08 | 45.5%)-Palmitoylethanolamide (171 | 4.9e-07 | 41.5%) Curcumin (610 | 7.6e-07 | 34.4%)-

Here’s a list of the top 20 treatments, from more than 150 options the study surveyed.

The chart is formatted as follows: Treatment Group (Total Number of Feedbacks | Proportion Test Adjusted p-value | Net Assessment Score)

#LongCovid #MECFS

doi.org/10.1073/pnas...

Note: I am a contributor to PLRC on a volunteer basis (i.e. any donations would not go to me - I'm just a superfan)

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This @patientled.bsky.social webinar was fantastic. If you missed it, I highly recommend checking out the below synopsis (and recordings when they're available).

If you are able, please consider donating to PLRC and/or sharing the info with others:
plrc.donorsupport.co/page/plrcdon...

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One more #NEISvoid inquiry - what helps your mental health and/or anxious thoughts in a crash? Just curious on different coping strategies.

What was achieved for Baby KJ in 6 months was inconceivable (Timeline below). The new Center will try to go even faster for lifesaving treatment of babies with rare diseases @ucsfmedicine.bsky.social @ucberkeleyofficial.bsky.social @urnov.bsky.social

Five years of Long COVID means five years of worsening health

Five years of Long COVID means five years of fear of reinfection

Five years of Long COVID means five years of fighting internalized ableism

Five years of Long COVID means five years of internet friends [heart]

[5 years of LC descriptors continued]

* Worsening health
* Fear of reinfection
* Word-finding mishaps
* No exercise
* Fighting internalized ableism
* Sensory overload
* Internet friends ❤️‍🩹

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Five years of Long COVID means five years of ruthless prioritization

Five years of Long COVID means five years of failed treatments

Five years of Long COVID means five years of muscle necrosis

Five years of Long COVID means five years of Long COVID denialism

Summarizing 5 years of Long COVID with a mix of devastating & lighthearted descriptors.

Five years of Long COVID means
Five years of…
* Ruthless prioritization
* Failed treatments
* Humility
* Long COVID denialism
* Missing out
* Muscle necrosis
* Naps
* Asking for help
* Dressing for comfort

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😬

Recordings and the Report from the 2025 International Forum on COVID Rehabilitation Research are now available, including the keynote session by @julialmv.bsky.social
www.youtube.com/watch?v=6wPH...
Check out all the recordings and report below:
rehabcovidnetwork.med.utoronto.ca/2025-interna...