victoria

@vashetc

† doktora | research+policy | perpetually horizontal ID’s: Brown skin grl with black curly hair tired up w/ pink hairsticks. Banner: Sepia picture of a couple getting married w/ family around them. vashetc.com | restandmecfs.com | survivorsandallies.com

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victoria@vashetc· 28d

brown skin girl with black curly hair wearing a patterned black dress with white and gray designs

victoria@vashetc· Jul 11

i mean genuinely where my hug at ass man

victoria@vashetc· Jul 10

wish i could be there in person, i miss Oregon! but alas Learn more and register to join us in Portland, OR: naccchildlaw.org/conference/4...

victoria@vashetc· Jul 3

spotted in my moms moving box at work, pride flag heehee. I'm so grateful for my mom being who she is. the first pride i can remember attending was when I was like 11 in Sitges. it was so wonderful 🥲 i know that i am lucky to have a mother who gives unconditional love and i dont take it for granted

a moving box with trinkets. on the top is a pride flag

victoria@vashetc· Jun 26

I am so angry that I can scream. I definitely could use validation. A fellow person in my are with ME/CFS sought advice on the dysautonomia intl. california facebook. and THIS is what dysautnomia intl replied, AFTER many warned about CHOP & GET. I'm so UPSET. Like absolutely disgusted.

While many people think anyone with
PEM shouldn't exercise, that's not what ME/CFS experts or POTS experts say.
ME/CFS experts do use carefully prescribed exercise as part of an overall treatment plan for ME/CFS patients. And is a very important part of the overall treatment approach for POTS, whether you have PEM or not, but it has to be dosed properly based on the individual needs of the patient, just like medications. You don't want to do too much or too intense, so that you are setting off PEM that prevents you from functioning.
There are a few presentations on the overlap of POTS and ME/CFS, and the role if exercise for patients who have both, on the agenda at our annual conference in Houston, July 9-12.
Some new research on this topic will be presented too. You can check out the agenda at DysConf.org.

victoria@vashetc· Jun 20

Just thrifted this incredible outfit for my first in-person talk and art installation in August 😭

brown skin girl with curly hair tied up with hairsticks wears a colorful bright tuqroise shirt with green, pink, orange, and red patterns and a ruffled fluffy khaki skirt

victoria@vashetc· Jun 18

📢 We need your support for AB 2212!!! ➡️ HOW YOU CAN HELP US: 1. Call Senate Judiciary Members before 5pm on June 22 & urge them to vote Aye on AB 2212! 2. Use our phone script & numbers in the action doc: docs.google.com/document/d/1... 3. Share this post to spread the word

The HEAR Survivors Act updates CA Education Code definitions of sexual harassment to include Al-generated and other forms of technology-facilitated sexual harassment. Universities will be required to update student trainings and Title IX policies accordingly.

Currently, the California Education Code does NOT include Al-generated sexual harassment in its definition of sexual violence.
LEARN

WHY AB2212?
Our 2025 research study with over 1,600 California students found: S+A
1 in 7 survivors reported experiencing online sexual harm.
70% survivors of online sexual harm never reached out to their institution for support. 40% survivors of online sexual harm never reached out to anyone for support. Technology-facilitated sexual harassment is an emerging crisis impacting student safety and belonging, It is imperative that California colleges and universities take steps to protect students.
SWIPE FOR MORE
Source:
Copeland, V.; Ha, S.; Sugai, S.; Phillips, K.; Wilf, S. Preliminary Research Findings on TechFacilitated Sexual Violence Among Higher Education Students in California. California: Survivors + Allies; 2026. Available at: http://survivorsandallies.com

WHAT WE NEED
The CA Senate Judiciary Committee is considering AB2212, sponsored with Assemblymember Bauer-Kahan, on Tuesday, June 23rd, 2026.
Updating the CA Education Code definition of sexual violence is critical to protecting students' safety.
DEADLINE: June 221d at 5pm
Link to Action Doc in bio!

CALL YOUR SENATORS!

PHONE SCRIPT
Hello, my name is [name] [add if you are a constituent of the Senator]. I am a [student/staffmember/alumni/etc] at [higher education institution], and I am calling to ask Senator [last name] to vote Aye on AB 2212, the HEAR Survivors Act, in the June 23 Judiciary Committee hearing.
California's Higher Education Code has not been updated to address today's emerging forms of sexual violence, including Al-generated sexual harassment. A recent statewide survey found that student survivors of online sexual harm were disproportionately LGBTQIA+ and women, that 70% never sought support from their institutions, and that they reported significantly worse mental health than other survivors. California lawmakers must protect students by updating and standardizing definitions of technology facilitated sexual harassment and strengthening existing student trainings. I'm urging the Senator to stand with students by supporting AB 2212.
Thank you

victoria@vashetc· Jun 15

my ex bought me the biggest sun hat of all time a few yrs ago and I just found it lol

victoria@vashetc· Jun 12

Accompanying reading list:

victoria@vashetc· Jun 3

oh dear, i just realized im going to be on a panel with Kevin Haggerty next week 😅 no pressure anyways, registration for conference here: surveillance-studies.net/conference/

victoria@vashetc· May 26

Three years ago, I took this picture on my birthday. I thought I’d be dead. And truthfully I was dying. Thanking God for my life today.

victoria@vashetc· May 26

In my auntie era fr now 3️⃣3️⃣

victoria@vashetc· May 25

terrible way to end 32, but grateful to God to be able to see 33, and with an incredible support system. 🎈 many love and thanks to everyone who has been checking in on me.

brown girl poses with black mask on, aquamarine/teal colored telfar and yellow and brown floral dress

pictures of people together hugging and posing

victoria@vashetc· May 12

As this participant briefly shared, many people with ME/CFS who do still have enough energy to work describe being trapped in a cycle of post-exertional malaise. Vital aspects of life like maintain a household, socializing, parenting, and caregiving are reduced to a minimum, or made impossible when balancing labor from work. About 8% of respondents in my study mentioned that maintaining part-time work required flexible accommodations that are often not provided. The majority of people with ME/CFS who cannot physically work, still face laborious administrative burdens –spending limited energy filling out forms and facing evaluations from people with no knowledge of this disease. One respondent shared: “I really need a wheelchair, which I think would help with PEM but not necessarily with resting (since I would be using it to go out and do things). I am stuck in a complex administrative limbo trying to access it (thanks, Medicaid).” Another added that they cannot rest because of “systems navigation, navigating food stamps and getting a caregiver through Medicaid and applying for disability benefits (that's a HUGE one, the SSA is so exhausting)”. And yet another explained: “The process of getting a diagnosis and applying for disability income has been a huge barrier to developing a sustainable life style with routines where I can rest and not be consumed by survival needs”.
Findings showed that this experience was worsened when a person with ME/CFS was also racially minoritized, queer, or trans, as they face an array of intersecting forms of oppression. One person witnessed this stating that: “As a person on Medicaid who is frequently coming into contact with social services, I often get a very specific kind of reception that feels kind of racially loaded. It's either some version of surprise that I need the services in the first place, or the thing where the provider will talk shit about other clients and then assure me I'm "not like that.".

people with ME/CFS suffer not only from medical neglect, but also from burdensome administrative bureaucracy and pervasive institutional abandonment from those who are supposed to be responsible for upholding our care apparatus. This abandonment not only impacts our livelihood, it also seeps into our homes and community networks. When asked whether or not they believe their friends or family understand their energy limitations, 87% of the current study sample said “sometimes” or “no”. A participant shared:
“I wish more people understood what this is like, especially the medical community. I wish I felt supported and accommodated so I could actually rest instead of pushing myself through PEM, terrified eventually I’ll make myself permanently worse to the point I won’t want to live anymore because I’ll have no function left. I wish there was more research about this or ways to help those of us who are severe and extremely severe. Just pace and rest doesn’t work for us but there aren't any other suggestions for us. We’re on our own and feel abandoned and gaslit. “

Today I will send the following demands:
1) I will write to my congressional representatives urging them to repeal antiquated medicaid work requirements. Research shows that work requirements DO NOT increase employment and would exacerbate the backlogs of already overloaded state agencies.[1] Discretionary categorizations of ability-to-work will force people into the cracks, worsening systemic neglect that so many already experience. HHS and congress should reconsider the ramifications of implementing and enforcing work requirements for disabled Americans who are already struggling to survive.
2) The second is just as important. Today I will write to the NIH and HHS demanding funding for real treatments that move the needle on treating ME/CFS in a meaningful way. There’s a completed research roadmap that was created by brilliant researchers that includes plans for medical trials. This roadmap needs to be funded now, as millions of people are needlessly suffering.

With love, spoons, and devotion,
Dr. Victoria Copeland
Empowerment through Community

[1] https://laborcenter.berkeley.edu/eight-million-medi-cal-enrollees-at-risk-of-losing-health-coverage-if-congress-imposes-work-requirements/

[2] https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group

victoria@vashetc· May 12

today is a bummer, hope those w/ this horrid disease will find some ease 💙

me/cfs awareness day, a picture of a person in bed holding a heart painting

To my peers, the ME/CFS community, and all others who may stumble upon this:
In 2022 my life was upended by ME/CFS. I lost my job, most of my relationships, my housing, my ability to walk, my ability to eat most foods, and even temporarily lost my ability to speak for two years. In 2023 I was so ill from trying to exercise my way out of this illness, that I had to get airlifted across the country. As of last week, I’m officially on doctor number 52, and only now am I receiving proper care. This should not be happening. But it is. People with ME/CFS are experiencing dire consequences from medical abandonment, including what can only be described as physiological torment. Medical and societal neglect is killing us. The current mainstream “treatments” that are being offered to people with ME are not treatments at all; they are shoddy bare-minimum attempts at concealing rampant institutional and systemic neglect. In consequence, we continue to suffer. Although we are often forced to rely on rest-as-treatment, in lieu of real clinical interventions, many of us are still unable to do so, particularly in a way that prevents further deterioration our condition.

In 2026 I launched a research study called Rest and ME/CFS, which is currently ongoing. Today I’d like to share a few particularly relevant preliminary findings. When asked what supports people need to adequately rest, 68% of responses from my study’s current sample (n=301) stated that they require physical accessibility measures (like mobility aides or ability to lay horizontal) and/or sensory and communication accessibility measures (like eye masks, and complete silence) to rest. 61% of responses showed that caregiving was also a necessity. Additionally, 53% of respondents reported that institutional supports like shelter/housing, medical insurance, financial assistance, and food security would are also essential in order for them to adequately rest.

a picture of two people with masks on helping a person in bed adjust their head and hair

However, the most reported barriers to getting adequate rest were: (1) distressing physical symptoms or PEM, (2) caregiving or parenting obligations, (3) financial constraints, and (4) lack of caregiver supports for themselves. Devastatingly, most participants reported that they lack supports they desperately need to do the one thing that doctors, and our federal medical research and public health agencies, have offered – rest. One participant shared “The stress of housing and income insecurity, the demands to attend appointments in loud, bright places, the lack of transportation supports. All of those things meant that I was ill for 4-5 years before I was able to even try to learn the meaning of rest.” Those who do have adequate supports, are barely managing to maintain them. Another participant in the study shared: “I'm over the income limit, so I'm on a special expansion program for working adults with disabilities that allows me to pay a premium for my Medicaid. I can no longer keep up with housework due to MECFS symptoms. I have housekeeper services through Medicaid which are critically important to my living in my own home. But I have to work part-time to maintain eligibility.”

victoria@vashetc· May 11

So many COVID safe hangs/sleepovers this past month ❤️ my heart is so full

brown skinned woman in black n95 mask and gray sweater poses next to a lighter skinned woman with red hair wearing a 3m aura

brown skinned woman in white n95 mask poses next to a lighter skinned woman wearing a mask

brown skinned woman in black n95 mask in bed poses next to a brown skinned person with a teal n95 mask

victoria@vashetc· Apr 29

somebodys auntie

brown skinned woman wearing gold hoops, sunglasses, and a black shirt with the word kehlani on it and kehlani's face in orange.

victoria@vashetc· Apr 27

"all that back back and forth got me feelin like Aaliyah"

brown skinned woman poses in wheelchair wearing a white crop top and blue silk bandana. im also wearing sunglasses and gold accessories.

brown skinned woman throws up the westcoast sign, sitting in wheelchair wearing a white crop top and blue silk bandana. im also wearing sunglasses and gold accessories.

victoria@vashetc· Apr 19

Are yall ready for a 90's R&B summer cuz I am 😭 im SEATED for Kehlani's album release

a brown woman with black curly hair smiles. she's wearing a 70's style patterned long sleeve collard shirt that has black, beige, and tan swirls. the frame of the picture is a VCR with the date NOV 28 1990

a brown woman with black curly hair smiles. she's wearing a 70's style patterned long sleeve collard shirt that has black, beige, and tan swirls. she's sitting in a wheelchair with her arm up. the frame of the picture is a VCR with the date NOV 28 1990

a brown woman with black curly hair poses. she's wearing a 70's style patterned long sleeve collard shirt that has black, beige, and tan swirls. she's sitting in a wheelchair. the frame of the picture is a VCR with the date NOV 28 1990

victoria@vashetc· Apr 17

It's my PhD Anniversary! Much love and gratitude to my big sister/mentor/inherited-second-mother @safiyanoble.bsky.social It has been the hardest 4 years of my entire life, but so glad that I'm having some improvement and was able to start work this year for the first time since graduating

Two women smiling and posing together for a picture wearing doctoral regalia, long blue gowns and caps.

victoria@vashetc· Apr 14

Thank you to all of the orgs who helped to support our bill 🥳 ahed.assembly.ca.gov/system/files...

REGISTERED SUPPORT / OPPOSITION:
Support
ASUC Sexual Violence Commission
Cal State Student Association
California Women's Law Center
Courage California
Electronic Frontier Foundation
Equal Rights Advocates Kapor Center Advocacy
Sexual Violence Prevention Association
Survivors + Allies Techtonic Justice
The Survivors Pro Bono
University of California Student Association
Valor US
Vera Institute of Justice
Opposition
None on file.

victoria@vashetc· Apr 11

🌴🌸

victoria@vashetc· Apr 3

A flyer for the survivors and allies report launch.

The text says: “Dreaming Together. California Student Survivors Reimagining Campus Responses to Sexual Violence. Friday, April 10th, 2026 10:00am -12:00pm PT. UCLA Royce Hall + Zoom. With a QR code. RSVP HERE.

Survivors +Allies (S+A) is a student-led community organization that uses research to advocates for, and with, survivors of sexual violence.

Join us to learn about our findings from a study with survivors across California colleges:
• Survivors' experiences with resource navigation, barriers to care, and healing
• Survivor evaluations of campus resources across UC, CSU, and community college systems
• Survivor recommendations for intersectional healing and justice”

To the right is a pink cartoon-styled picture of a woman sitting on a sunflower looking off into the distance. She’s surrounded by other white and red flowers.

Several logos are on the bottom of the page including Survivors+Allies, UCLA CSW Barbara Streisand Center, Semel Healthy Campus Initiative Center at UCLA, UCI Joe C. Wen School of Population and Public Health, UCI Initiative to End Family Violence, UCLA Center on Resilience and Digital Justice, and UCLA PHSA.

Visit surivorsandallies.com for more

victoria@vashetc· Mar 16

example image, and something i should've been told about but hey another day in the freaking life of being someone with a disease no one cares to learn about

victoria@vashetc· Mar 15

All of my records from 2023. If I included 2022 it would’ve been way more. Thanks COVID.

victoria@vashetc· Mar 13

I didn't have energy to write an op-ed this year, but I wanted to share this short research brief with a few quotes I pulled from my ongoing research study. Sending my love to everyone with LC. It is a tough week for me.