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KH

@khvmd.bsky.social
195 followers 160 following 666 posts

pwME since 2018 Veterinarian Pittsburgh, PA USA

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Reposted by KH
ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
@simmaronresearch.bsky.social NIH R01 Grant: New 5-year NIH funding will study mTOR dysfunction in ME/CFS, building on Simmaron’s rapamycin research; a placebo-controlled rapamycin trial and biomarker test are also planned www.simmaronresearch.com
simmaronresearch.com
Simmaron Research
Simmaron Research plays a key role in developing scientific research to improve diagnosis, treatment and medical understanding of ME/CFS and other neuroimmune diseases.
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ME/CFS San Diego @mecfssd.bsky.social · 16/09/2026
Australian ME/CFS/LC Burden of Disease Study: Australians 18+ living with ME/CFS and/or LC can share experiences in a confidential 55-question @emergeaustralia.bsky.social survey on health, disability, care and economic impact. Open until Sept 30. emerge.org.au/mecfs-lc-sur...
emerge.org.au
ME/CFS and long COVID survey - Emerge Australia
Living with ME/CFS or long COVID in Australia: A National Burden of Disease Study Help improve understanding, care and research for people living with ME/CFS and long COVID in Australia.Emerge
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
What Doesn’t Kill You Documentary: People with ME or LC can still submit their stories for consideration in the documentary and wider advocacy work. whatdoesntkillyou.movie/interview
whatdoesntkillyou.movie
Share Your Story | What Doesn't Kill You
We're collecting stories from as many people with ME/CFS and Long COVID as possible for the documentary. Share yours.
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Tom Kindlon @tomkindlon.bsky.social · 19/09/2026
"On this page you will find ongoing ME/CFS clinical trials looking for participants" All currently look like they are in the US except the Open Medicine Foundation Study ME registry which is international ammes.org/clinical-tri... #MEcfs #PwME #CFS #LongCovid
Clinical Trials
On this page you will find ongoing ME/CFS clinical trials looking for participants. For more ongoing clinical trials as well as completed clinical trials go to Clinicaltrials.gov

You can read about the latest resources for investigating the causes and mechanisms of ME/CFS here: New resources for large-scale ME/CFS research

Be sure to check the Institute for Neuro-Immune Medicine for their ongoing trials.

See the Icahn School of Medicine at Mt Sinai for their ongoing trials.

See Solve’s list of clinical trials for ongoing trials.

Stanford University is recruiting for a number of ongoing research studies.

Also see this google document for a long list of ongoing Long Covid trials: https://drive.google.com/file/d/1A_KYwsDR6_vzF8hqZTMhFan56Vzw-Gno/view
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VirusSucks.com @virussucks.com · 05/08/2026
Call your Congressman and demand $50 million in NIH funding for #LongCOVID and #MEcfs research. notjustfatiguewebsite.cdn.prismic.io/notjustfatig...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.—The 
Committee recognizes the urgent need to advance research for ME/CFS, particularly given 
its overlap with long COVID and its relevance across multiple Institutes and Centers, and 
commends NIH for approving the ME/CFS Research Roadmap and developing an 
implementation plan in response to prior Committee direction. Building on this work, the 
Committee provides no less than $50,000,000 within the Office of the Director to support 
implementation of the ME/CFS Research Roadmap. These funds shall be used to support 
new and expanded research activities consistent with the Roadmap’s recommendations, 
including but not limited to biomarker discovery, development and validation of diagnostic 
tools, and interventional and clinical trials across relevant Institutes and Centers.
The Committee directs NIH to implement the ME/CFS Research Roadmap’s 
recommendations and to include in the fiscal year 2028 Congressional Justification a 
discrete summary of ME/CFS-related research investments, including projects supported 
with these dedicated funds; a description of how Roadmap implementation is being 
coordinated across Institutes and Centers; and an explanation of how ME/CFS research 
supported under the Roadmap complements and informs NIH’s research on Long COVID, 
post-acute infection syndromes, and related autonomic and neuro-immune disorders.
Thank you for your leadership and consideration of this request. With dedicated FY27 support, 
Congress can help ensure the ME/CFS Research Roadmap becomes a real vehicle for progress—not 
just a plan on paper—and finally move this field toward the diagnostics, treatments, and answers


https://notjustfatiguewebsite.cdn.prismic.io/notjustfatiguewebsite/abJ_fVxvIZEnjmR3_ME-CFS-FY27-Appropriations-Letter-Research-Roadmap-Funding.pdf
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Blue Fairylicious Girl🧚 @bluesnowflake.bsky.social · 17/07/2026
I just heard someone call Trump’s speech The Pettysburg address and now I have to go lie down 🤣🤣💀
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Kristy Ainslie's Lab @kristy-ainslie-lab.bsky.social · 28/06/2026
We show that biodegradable microparticles can reprogram B cells to restore immune tolerance in MS w/o broadly suppressing immunity. 83% of fully paralyzed mice recover, and protective immunity remained intact! Article: go.unc.edu/NatCommBcell Substack: go.unc.edu/SStNatCommBc...
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Tom Kindlon @tomkindlon.bsky.social · 11/06/2026
“So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way.” #LongCovid
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Steve Fifield @stevefifield.bsky.social · 29/05/2026
#pwME #pwLC For everyone who knows me who is following “Just Anne”, if you don’t already know this: @smartpatient.bsky.social 🤖 IS A BOT 🤖 Which makes hundreds of posts every day, so couldn’t possibly be employed.
Screenshot of “JustAnne” BOT account
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C.H. Romatowski @chromatowski.bsky.social · 20/04/2026
#MCAS folks— The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers. Please take it, please share it! Survey: forms.office.com/e/N4RDJYVep0 Org: ismcas.org Qs: advocacy@ismcas.org
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KH @khvmd.bsky.social · 15/04/2026
My ME/CFS brain needs this immediately! flip.it/hy3RNd
flip.it
Nasal Spray Reverses Brain Aging and Inflammation - Neuroscience News
Can a nasal spray reverse brain aging? A new study shows that intranasal extracellular vesicles can clear brain fog, recharge mitochondria, and improve memory.
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Anna Wood @annakwood.bsky.social · 09/04/2026
Help! I'm looking for people with ME/long covid or similar who do something creative (eg painting, photography) that is inspired by nature to feature in my book. Ideally people more severely affected than me, so bed bound or partially bed bound #mecfs
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Matt Lazell-Fairman @mfairma.bsky.social · 24/03/2026
🚨A pwME in Poland (not a minor) has been sectioned at the urging of their parents. Their friend is working to help get them out and could use recs for Polish lawyers knowledgeable in these spaces or help from other PwME from Poland. If you can help, I’ll connect. #MECFS #LongCovid
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Tom Kindlon @tomkindlon.bsky.social · 10/03/2026
HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane @binitakane.bsky.social m.youtube.com/watch?v=pk00... Screenshot from Science for ME weekly update #LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
UK HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane
“In this episode of HLTH Chat, we talk to Dr. Binita Kane, a consultant respiratory physician and founder of The Long Covid Clinic, about the immense challenges of treating chronic post-viral illnesses and the realities of establishing a specialist independent service.”
“We explore why so many patients with Long Covid and ME/CFS feel abandoned by the current healthcare system, and how Dr. Kane’s personal experience with her daughter’s illness drove her to leave a 25-year NHS career to fill a critical gap in care.”
“and why international research investment is a vital beacon of hope for millions.”
Video | Thread
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KH @khvmd.bsky.social · 05/03/2026
I wonder if anybody is working on this for ME/CFS? Sign me up! flip.it/2BUNES
flip.it
Bio-Boosting the Brain: Mitochondrial Transplant Restores Cellular Power - Neuroscience News
Researchers uncover how cells internalize transplanted mitochondria, paving the way for new energy-restoring therapies for Parkinson’s and Alzheimer’s.
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Carl Quintanilla @carlquintanilla.bsky.social · 28/02/2026
> @covie93.bsky.social
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Tom Kindlon @tomkindlon.bsky.social · 11/02/2026
I have spent quite a bit of time/energy already on this and it is going to be my primary focus for the next few months. Please highlight widely. 🙏 #Ireland #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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Tom Kindlon @tomkindlon.bsky.social · 08/02/2026
🧵 Interview with @bi-ta.bsky.social - medical sociologist & author of "Contested & neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome" chroniclivingtherapy.com/nezamdoust-m... Screenshot from @chronicliving123.bsky.social newsletter #MEcfs #SevereME #CFS #PwME 1/
Bita Nezamdoust - medical sociologist

We start 2026 with this interview in which Bita Nezamdoust reflects on her recent publication, looking at how isolated patients use social media. She reflects on how this may help therapists to understand the experiences of people with severe and very severe ME.

This patient group is often neglected due to the 'non-standard' approaches needed to search them out and listen to them. Using short communications on social media is an ingenious way to amplify some of the voices and needs of these patients.

Bita gave generously of her time in answering my many questions and the article gives an empathetic insight into the lives of people with severe, and very severe, ME.

Read Bita Nezamdoust's article

Photo of Bita Nezamdoust
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KH @khvmd.bsky.social · 18/01/2026
New Solve ME video on a biomarker test in development at Oxford. Sounds like it could be a reality quite soon! 👏 youtube.com/watch?v=DqRA...
youtube.com
From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test
YouTube video by SolveME
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Reposted by KH
Tom Kindlon @tomkindlon.bsky.social · 23/12/2025
Great to see this sympathetic overview article in the LA Times www.latimes.com/doctors-scie... It's long so many if not most patients probably won't agree with every sentence but overall gets across a lot sympathetically. Note: it doesn't focus on any particular news #MEcfs #CFS #PwME
Image of a man with his hand to his face

Chronic fatigue syndrome

Kevin Famuyiro
By Kevin Famuyiro
Senior Content Strategist
Contact
Dec. 20, 2025 5:21 AM PT


16 min
Click here to listen to this article

Key Facts
ME/CFS is characterized by Post-Exertional Malaise (PEM), where symptoms worsen after minimal activity.
The condition is classified as a neurological disease often triggered by viral infections or immune dysfunction.
Diagnosis is a process of exclusion, requiring a thorough medical exam to rule out mimickers.
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Kristin Houlihan, Writer @kristinwrites.bsky.social · 23/11/2025
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know. substack.com/home/post/p-...
substack.com
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
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KH @khvmd.bsky.social · 21/09/2025
@bsky.app Why are there endless posts of people’s half naked selfies and explicitly drawn cartoons in my discovery feed? How can I make this stop?
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KH @khvmd.bsky.social · 20/08/2025
www.nature.com/articles/s41... It has been my belief since I first got ME/CFS, 7 yrs ago, that one day there would be straight lines drawn between mitochondria and literally every symptom of ME. Here’s an article that finds mitos in certain brain neurons are what controls sleep. In fruit flies.
nature.com
Mitochondrial origins of the pressure to sleep - Nature
Research on Drosophila neurons shows links between the need to sleep and aerobic metabolism, indicating that the pressure to sleep may have a mitochondrial origin.
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The Spirit of Lorenzo the Cat @lorenzothecat.bsky.social · 08/07/2025
Texas Floods Missing Pets: Kerrville Pets Alive and Austin Pets Alive have set up a hotline for the many rescued cats and dogs in their care that need to be reunited with their owners.
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Tom Kindlon @tomkindlon.bsky.social · 15/06/2025
Seeing the Invisible: Illuminating brain function in ME/CFS & #LongCovid youtu.be/3-54JAgZ2x8 Dr Chris Armstrong & his team at OMF’s Melbourne ME/ #CFS Collaboration are investigating the link between neuroinflammation, cerebral blood flow, & dysregulated hormones in #MECFS, #POTS, & Long #COVID
youtu.be
Illuminating Brain Function in ME/CFS and Long COVID
YouTube video by Open Medicine Foundation - OMF
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KH @khvmd.bsky.social · 30/05/2025
Donated.
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KH @khvmd.bsky.social · 21/05/2025
Signed.
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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 01/05/2025
🧵 May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by reposting and/or liking this image. Day 1 #MEcfs #CFS #PwME 1/
Bone-crushing exhaustion
Pain
Insomnia
Muscle weakness
Cognitive problems
Dozens of other disabling symptoms
24 hours a day
7 days a week
365 days a year
Possibly for the rest of my life
(unless a cure or effective treatment is found)
Myalgic Encephalomyelitis (ME) is a painful and
disabling disease, especially in its severe forms
(ME is also known as Chronic Fatigue Syndrome in some countries)
Click 'Like' and 'Share' to help me
become visible and give me hope for a cure!
MEAwarenessPics
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Brian Vastag @brianvastag.sciencemastodon.com.ap.brid.gy · 01/05/2025
May 12 is the annual Millions Missing protest in DC, where people with ME/CFS and #LongCovid and related disorders demand appropriate care and research. My late partner Beth Mazur was one of the originators of #MillionsMissing and the first protest was, I believe, in 2016, marking this as the […]
sciencemastodon.com
Original post on sciencemastodon.com
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Miles W. Griffis @mileswgriffis.bsky.social · 25/04/2025
Have you taken a JAK STAT inhibitor for Long COVID or ME? I'm working on a story about these drugs (baricitinib, abrocitinib, upadacitinib, and others) which are currently being investigated in clinical trials for the disease. Reach me at: miles@thesicktimes.org or dm for signal!
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Tom Kindlon @tomkindlon.bsky.social · 11/04/2025
"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer" Links: www.cards2warriors.org www.cards2warriors.org/happy-mail Image from Institute for Neuro-Immune Medicine e-bulletin #chronicillness
Chronic Illness Support

 
	Have you heard of Cards2Warriors? We want to highlight the special work this nonprofit does for those affected by rare or long-term illnesses —including patients, caregivers, siblings, and medical professionals.

Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those who need encouragement and cheer.

It doesn't matter which of the 7,000+ rare or long-term illnesses you've been diagnosed with —Cards2Warriors welcomes YOU and wants to shower you with some snail mail support!

Open to warriors worldwide, with an option for digital cards. Learn more and sign-up here.
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Chris M. Barkley (He/Him) @cmzhang42.bsky.social · 29/03/2025
THIS IS NOT OK!!!!! 🤬
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Max Kozlov @maxkozlov.bsky.social · 28/03/2025
Confirming this scoop by @thesicktimes.bsky.social - an HHS source says that Sen. Todd Young (R-IN), who secured a commitment from RFK Jr. during his confirmation hearing that he'd continue funding long COVID research, intervened.
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Billy Hanlon @bhanlon15.bsky.social · 09/03/2025
NBC: “HHS sends all employees a $25,000 voluntary buyout offer” The agency’s approximately 80,000 employees were emailed Friday night with the offer of a “voluntary separation incentive payment” www.nbcnews.com/politics/tru...
nbcnews.com
HHS sends all employees a $25,000 voluntary buyout offer
The agency’s approximately 80,000 employees were emailed Friday night with the offer of a “voluntary separation incentive payment.”
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Xabier Ostale @embers1.bsky.social · 09/03/2025
"The Elizabeth Glaser Pediatric AIDS Foundation said the latest cuts will deprive 350,000 people of HIV treatment" It's a death sentence for those who are deprived of treatment.
salon.com
"A whole new level of cruelty": Health experts decry "devastating" cuts to HIV treatment programs
The Elizabeth Glaser Pediatric AIDS Foundation said the latest cuts will deprive 350,000 people of HIV treatment.
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KH @khvmd.bsky.social · 01/03/2025
One of these two guys is rethinking his life choices.
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Merrydholl @maryeilmicdom.bsky.social · 23/02/2025
archive.ph/2025.02.23-1... Sean O'Neill writes about the sheer uselessness of Coroner's Courts from terrible experience. #MEcfs
archive.ph
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Marisa Kabas @marisakabas.bsky.social · 24/02/2025
This morning at Dept of Housing and Urban Development (HUD) HQ in DC as mandatory return to office began, this video played on loop for ~5 mins on screens throughout the building, per agency source. Building staff couldn’t figure out how to turn it off so sent people to every floor to unplug TVs.
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Julia MV @julialmv.bsky.social · 23/02/2025
I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization. Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy. ME limits your energy, and thereby the vibrancy of your life.
A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome)

Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME.
The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively).
Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple).
With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks.
Mild ME has most things cut in half, with exercise cut smaller.
Moderate ME removes exercise altogether, and everything else shrinks.
Severe ME has only tiny slivers of red, orange, green, blue and purple.
Very Severe ME has only a tiny sliver of green.
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Luis Ostrosky, MD, FIDSA @drluiso.bsky.social · 15/02/2025
If you are an NIH or CDC scientist that lost your job, we have a home for you at UTHealth. I’m hiring physician scientists and we also have transplant ID fellowship slots open. Contact me. #IDSky #MedSky
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Tom Kindlon @tomkindlon.bsky.social · 11/02/2025
2-minute video clip from ABC (Australian national TV) plus longer text piece on ME Research UK-funded study "Long COVID [& ME/CFS] patients show brain swelling linked to memory and concentration problems, study finds" www.abc.net.au/news/2025-02... #MEcfs #LongCovid
Long COVID patients show brain swelling linked to memory and concentration problems, study finds
Janelle Miles profile picture
By Janelle Miles

Topic:COVID-19

6h ago
6 hours ago

Has Video Duration: 1 minute 53 seconds.
Watch 1m 53s

Researchers have found long COVID patients exhibit swelling in an area of the brain linked to memory problems, poor concentration and delayed responses during conversations. (ABC News: Emma Pollard)

Long COVID patients exhibit swelling in an area of the brain linked to memory problems, poor concentration and delayed responses during conversations, researchers have found.

Based on high-powered scanning, Griffith University scientists say they have also shown patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share similar issues in a part of the brain known as the hippocampus.

Because the shape of the hippocampus resembles that of a sea horse, the name is derived from the Greek words, hippos, meaning horse, and kampos, meaning sea monster.
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Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 09/02/2025
Dealing with someone with very severe ME can be frightening as most people, including medical doctors, have never seen a patient so ill. Understandably, there is a natural tendency for people (families and physicians) to panic, to worry that the person might die, and to rush the person to a
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KH @khvmd.bsky.social · 09/02/2025
He doesn’t see the connection!
A Twitter exchange between Molly Jong-Fast and Elon Musk. 

Molly Jong-Fast @ @MollyJon...•14h X" I don't think the richest guy in the world should be cutting funding for cancer research.

Elon Musk 0 X @elonmusk
I'm not. Wtf are you talking about?

Molly Jong-Fast ©
@MollyJongFast
The Trump administration is cutting billions of dollars in biomedical research funding, alarming academic leaders who said it would imperil their universities and medical centers...
NIH cuts billions of dollars in biomedical funding, effective i...
From washingtonnost.com
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Crouton & Friends 🐮 @mcrouton.bsky.social · 08/02/2025
Looking for some recommendations for some adult coloring books or the like. Going to try it to quiet the mind a bit. I’m struggling. A lot. Distress tolerance is a skill set I learned long ago but I’m not sure I’m skilled enough for this reality 😭#grief
media.tenor.com
a cartoon of a dog sitting in front of a laptop with a speech bubble saying it 's fine
ALT: a cartoon of a dog sitting in front of a laptop with a speech bubble saying it 's fine
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KH @khvmd.bsky.social · 07/02/2025
@davetuller1.bsky.social @tomkindlon.bsky.social @naomidharvey.bsky.social
I recently saw a new newsletter from Terra Biological entitled Oxaloacetate CFS. 
I emailed them about using the term CFS. Suggesting that it was outdated, inaccurate, fraught with a history of harm to pwME, and in no small part responsible for the systemic failure of governments, medical institutions, research funding, poor research based on vague criteria, psychologizing, denial of benefits, dismissal and gaslighting of patients for decades. 
I thought they should replace CFS with ME or at least ME/CFS. 
I have read many articles over the years spelling out the history of harm done by the CFS nomenclature and its downstream effects on every aspect of the science, medical and social support for pwME.
I was asked to provide links for their review, but I am finding that I don’t have the energy to track them down. I was wondering if anybody could point me towards such articles so that I may pass them along?
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For the Love of Missy @missybbbobtail.bsky.social · 07/02/2025
We are sobbing here. $250 Chewy Gift Card to his lucky adopter! 🚨 JOEY; 19 YEARS OLD & at the shelter. Let’s network & find him a HOME to live out his ✨ golden days/years by….. SHARING this post! He is an absolute doll!!! 🧡🙏🏻 Available for adoption at LCAS 🧡 www.loudoun.gov/4118/Animal-...
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Kye @gxldsociety.bsky.social · 06/02/2025
THIS IS IT. The special general elections for Florida’s 1st & 6th Congressional Districts are on APRIL 1, 2025. If we flip these seats, we can STOP Project 2025. No excuses! Mark your calendars! Show up!
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David Tuller @davetuller1.bsky.social · 03/02/2025
A letter to @bmj.com from Professor Jonathan Edwards of UCL about Cochrane's indefensible decision to abandon a long-promised update of its very flawed 2019 review of exercise therapy for ME/CFS: virology.ws/2025/02/03/t...
virology.ws
Trial By Error: Professor Edwards' Letter to BMJ on the Cochrane Mess | Virology Blog
By David Tuller, DrPH The Cochrane mess, which I wrote about the other day, is threatening to take on a life of its own. Perhaps Cochrane thinks the fuss ov ...
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KH @khvmd.bsky.social · 29/01/2025
@janetdafoe.bsky.social I saw this post about bacteria infecting mitochondria in ticks and wondered if there could be a bacteria or viral infection in human mitochondria causing ME? Could you ask Ron about it? Or pass the question on to an appropriate researcher?
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