Advertisement ยท 728 ร— 90

Posts by kate

I'm just going to repost this excellent thread from @tkingfisher.com about how the big box stores are not to be trusted with advice about what plants to grow

Their shareholders do not care if your plant dies after you've paid them for it!

23 hours ago 12 2 2 0

ALSO on a disability related note

I am finding that learning ASL

Has helped with brain fog related language issues in general, particularly with structuring my writing?

Which is something I've REALLY been struggling with for the past 5-6 years (since a big flare)

#NEISvoid

1 day ago 13 2 3 0

Anyway if any of y'all are ever interested in learning ASL

Queer ASL has been great (and super fun!)

Currently in a class specifically designed for disabled students and it's just... So nice

1 day ago 5 2 0 0

๐Ÿ™

1 day ago 0 0 0 0

#MECFS #longCOVID

Anyone have a gift link?

3 days ago 1 2 1 0

Gentle but important reminder if you are at zero- if even the lowest level is too much for you right now, just stay with us. Self-care and rest are acts of resistance. You are important. Your continued existence is critical. We hold space for you and look forward to a day you can join in again.

4 days ago 9 3 1 0

Exciting update!

The drive to ask Senators to sign a request for Long Covid funding is going so well that the deadline has been extended to Mondayโ€”calls and shares this weekend will continue to help!

And 13 Senators have already signed on!

Ask yours to join: tinyurl.com/LongCOVIDCall

4 days ago 46 25 1 0
Clinical care guide for managing ME/CFS and Long COVID, A Decade of Expertise offering patient guidance.

Clinical care guide for managing ME/CFS and Long COVID, A Decade of Expertise offering patient guidance.

Over a decade of clinical expertise, distilled into one guide. BHCโ€™s Clinical Care Guide is a practical roadmap for navigating ME/CFS, Long COVID, fibromyalgia & related conditions. Free to download, free to share. ๐Ÿ’™ย 

Download: https://bit.ly/4jScKFu

#MERC @openmedf.bsky.social.

6 days ago 22 11 0 0
Preview
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study - Journal of Translational Medicine Background mTOR activation is associated with chronic inflammation in ME/CFS. Previous studies have shown that sustained mTOR activation may cause chronic muscle fatigue by inhibiting ATG13-mediated a...

21 October 2025
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study

Brian T. Ruan, Sarojini Bulbule, Brooke Gile, Amy Reyes, Bela Chheda, Lucinda Bateman, Jennifer Bell, Brayden Yellman, @grachstephanie.bsky.social

6 months ago 47 24 2 3
Advertisement

New paper published today! โค๏ธ

Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm ๐Ÿงช ๐Ÿงต

www.mdpi.com/1660-4601/23...

2 weeks ago 79 32 1 3
Preview
ME/CFS Resources for Medical Students CDC provides ME/CFS resources for the next generation of healthcare professionals in training.

Awhile since I promoted/discussed the deck; @jencurtinmd.bsky.social and @grachstephanie.bsky.social reviewed, and @erinmarilee.bsky.social of #MEAction Georgia and I worked on it together.

The deck is recommended by CDC on their page on #MECFS for medical students: www.cdc.gov/me-cfs/hcp/t...

4 days ago 7 2 1 0
Preview
From the medicalschoolanki community on Reddit: New deck for infection-associated chronic conditions (IACCs) Explore this post and more from the medicalschoolanki community

I wanted to point out the convos in the Reddit thread, specifically, because people asked some really insightful questions and allowed me to speak about IACCs in a slightly less formal way to get at some challenges in clinical care.

www.reddit.com/r/medicalsch...

4 days ago 10 3 1 0

Did you know that ~70% of first-year medical students use Anki flashcards to study for their medical exams?

We created an Anki flashcard deck for infection-associated chronic illnesses, including #MECFS, #LongCOVID, #POTS, #MCAS, #hEDS, & more.

Great convo & links! - www.reddit.com/r/medicalsch...

4 days ago 69 35 3 0
Microsoft Forms

To do this, we have created a short (~5 min) survey, open to English-speakers age 18 years or older from any country who is:
โ€ข A patient with diagnosed or suspected MCAS, OR
โ€ข A carer of a patient(s) with diagnosed or suspected MCAS

Link: forms.office.com/e/N4RDJYVep0

1 month ago 3 2 1 0

FYI
@chromatowski.bsky.social
@exceedhergrasp1.bsky.social

3 days ago 2 0 0 0

#MECFS

If you have a few spoons, let them know your priorities...

3 days ago 8 4 1 0
Preview
International Society for Mast Cell Activation Syndromes (ISMCAS) ISMCAS is a global, multidisciplinary professional society committed to advancing care, research, and education for mast cell activation syndromes and related disorders.

๐ŸšจMCAS: EXCITING NEWS & SURVEY OPPORTUNITY๐Ÿšจ

Dr Larry Afrin & MANY others have been working behind the scenes for years trying to improve the mast cell activation syndrome situation. The work has paid off & we now have an International Society for MCAS: ismcas.org ๐Ÿงต

1 month ago 22 16 1 2
Preview
Scientists capture how cells trigger inflammation SLAC scientists observed an immune signaling complex forming inside cells for the first time, revealing insights that could guide new treatments.

Scientists capture how cells trigger inflammation
news.stanford.edu/stories/2026...

โ€œOur findings suggest the inflammasome may assemble in a very different way than scientists previously thoughtโ€

4 days ago 5 5 1 0
Preview
In Pursuit of Understanding the Crash What Post-Exertional Physiology Tells Us About ME/CFS

"Simply put, the bodies of people with ME/CFS can not efficiently do the work of recovery. And because these abnormalities are found in pwME but not matched deconditioned controls, we can confidently say that PEM is not deconditioning." likeannopeningbandforthesun.substack.com/p/in-pursuit...

5 days ago 22 6 0 0
Advertisement

Oh, this is quite bad, actually.

5 days ago 46 9 1 0

(reposting with alt textโ€ฆ)

i got ME/CFS in high school, i never even got to get to the prime of my life.

makes me so sad and angry that weโ€™re exposing all kids to a mass-disabling pandemic thatโ€™s raising rates of ME/CFS and also making the very-similar long covid the most common childhood illness.

9 months ago 15 7 3 5

6.
Ron Davis, the pioneering ME/CFS scientist at the Open Medicine Research Foundation at Stanford, says, โ€œThe Immune system in
ME/CFS makes the immune disruption in HIV/AIDS look easy.โ€

@openmedf.bsky.social

7 months ago 2 1 1 0

7
ME/CFS patients may have amped-up immune systems in response to infections, but they are also โ€œmodestly to severely immunocompromised,โ€ says Dr. Nancy Klimas, a brilliant ME/CFS physician and researcher at NSUโ€™s
Institute for Neuro-Immune Medicine.

7 months ago 2 1 1 0
Preview
Virus Genome Sequences in the Blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a baffling disease. The disease has a wide spectrum of severity, to date has no established molecular marker, no known causation, and no cure. Many patients report in retrospect that they suffered a virus infection prior to suffering their first symptoms of ME/CFS. Therefore, we report a search for virus genome sequences in the cell-free blood of ME/CFS patients and healthy controls. We used a panel of molecular probes to assess the presence or absence of 185 diverse human viruses in each sample. We identified a total of seventeen viruses, with more in the healthy controls than in the ME/CFS patients. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement These experiments were supported by NIH grant 4 P01 HG000205 to RWD. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Stanford University IRB (Protocol 34830) gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All scripts, keyfiles, and data (starting with the collapsed fastq sequences at the end of step2) are available at https://github.com/k-roy/MOLECULAR _PROBES and archived with Zenodo at https://doi.org/10.5281/zenodo.17429326. <https://github.com/k-roy/MOLECULAR_PROBES> <https://doi.org/10.5281/zenodo.17429326>

5) Link to the new preprint:

Hyman et al. 2025. Virus Genome Sequences in the Blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients.
www.medrxiv.org/cont...

The older Lipkin study is available here:
onlinelibrary.wiley....

5 months ago 10 1 0 0
Promotional graphic for the StudyME Registry. The background shows blurred researchers working in a lab. Text on a white banner at the bottom reads: โ€œDo you want to help speed up the research process? Now you can! Join the OMF StudyME Registry:ย www.omf.ngo/studyme.โ€

Promotional graphic for the StudyME Registry. The background shows blurred researchers working in a lab. Text on a white banner at the bottom reads: โ€œDo you want to help speed up the research process? Now you can! Join the OMF StudyME Registry:ย www.omf.ngo/studyme.โ€

๐Ÿ”ฌHelp advance #MECFS and #LongCOVID research by joining OMFโ€™s StudyME, a free global participant registry that connects you with researchers conducting studies in these areas.

๐Ÿ‘‰ Sign up today: https://www.omf.ngo/studyme/

#UnitedForME #MECFSresearch #POTS #pwME #pwLC

2 weeks ago 7 5 0 0

Good pull quote:

#MECFS #PEM

5 days ago 22 7 0 0
Preview
In Pursuit of Understanding the Crash What Post-Exertional Physiology Tells Us About ME/CFS

#MECFS

Important piece from @sunsopeningband.bsky.social detailing whatโ€™s known about post-exertional malaise and what science must take into account in order to advance research on this critical phenomenon.

5 days ago 27 8 2 2
Advertisement
Preview
A Distinct New Type of Diabetes Is Now Officially Recognized The International Diabetes Federation (IDF) officially recognized a fifth form of diabetes in 2025, after decades of controversy.

Type V Diabetes, due to malnutrition and with a different pathogenesis than Types I or II, officially recognized. ๐Ÿงช

www.sciencealert.com/a-distinct-n...

6 days ago 30 14 1 0

Your bit of good news for the day

6 days ago 413 120 7 0

I don't have the capacity right now for a genuine breakdown of the +/- of the study, but maybe someone else will

5 days ago 0 0 0 0