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It'sME(Jaime) Profile picture
@exceedhergrasp1
Apr 6 • 6 tweets • 2 min read • Read on X
Let's say you have #MECFS or #LongCOVID and you think you might be ready to work again.

But only if you received the right kind of accommodations at your workplace... how would your employer (or you, even!) know what to suggest?

A few years back, our own Ben Hsuborger (1/5)
...worked with a work accommodations website called AskJan to revise and update their page on #MECFS, and he did an incredible job. The best aspect is that, when you scroll down, you can see accommodations by symptom. (2/4) #DisabilityTwitter (2/5)

askjan.org/disabilities/C…
Issues with concentration, memory, and executive function are central to #MECFS presentation. You can find AskJan's list of accommodations for #ADHD and executive functioning here (note: two links to follow). (3/5)



askjan.org/disabilities/A…
askjan.org/articles/Execu…
If you've received the #LongCOVID label but NOT the #MECFS label, they have a page of accommodations specifically for #LongCOVID! (4/5)

askjan.org/disabilities/L…
Not everyone with #MECFS or #LongCOVID will reach a place where they are able to work; 25% of #pwME can work at all, and only ~13% can work full-time.

But that's still about a million #pwME in the US, so if this is you, I hope this helps! #DisabilityTwitter (5/5)
We're fundraising as we approach #MillionsMissing with our #TeachMETreatME campaign! If you value the work Ben did with AskJan and can drop us a little donation, we'd appreciate it! Shares are good, too. ;) meaction.net/donate

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More from @exceedhergrasp1

It'sME(Jaime) Profile picture
Oct 31, 2023
Excellent news! #CDC has a new page on infection-associated chronic sequelae. Of particular import: these chronic symptoms linger "even after appropriate treatment". 🧵 (1/4)
Some highlights:
✨Lists pathogens known to lead to chronic issues, inc. COVID, Borrelia, EBV
✨Talks about how some symptoms are specific to pathogen, others are common to many infection-associated chronic illnesses
✨Lampshades #MECFS multiple times in the article (2/4)
Highlights, cnt'd
✨Common-language etiology section that outlines a very complex picture very clearly
✨Mentions that everyday testing may not show anything but this does not mean symptoms aren't impairing
✨Lists their current projects (could be more/better, but still) (3/4)
Read 5 tweets
It'sME(Jaime) Profile picture
Oct 30, 2023
#Disability rates have skyrocketed in the United States in the wake of #COVID, with infection-associated chronic illnesses like #MECFS, #POTS, & #MCAS surging.  US Census figures currently report that 14% of Americans are now disabled. (1/7) 🧵
Rather than address the growing crisis of an ongoing pandemic, not to mention those already disabled, the US Census is responding by changing the definition of disability.

And if they do so, the rate of disability as identified by the Census is slated to drop to 8%. (2/7)
Dr. Bonnie Swenor, Director of the Johns Hopkins Disability Health Research Center, says, "These changes have moved forward w/o the input of the disability community & have far-reaching, negative implications for disabled people..." (3/7)
Read 14 tweets
It'sME(Jaime) Profile picture
Oct 7, 2023
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with @GrachStephanie and Ravi Ganesh and Tony Chon on this! 🧵#MedEd #MedTwitter mayoclinicproceedings.org/article/S0025-…
A concise clinical review is limited to a specific word count and a specific citation count, so we did our best to include the most vital information for diagnosis and treatment of #MECFS. (2/)
Concise clinical reviews are also a way to offer CME credit. Medical providers can take the free CME by reading the paper carefully and then answering the case-based questions that follow. #MedEd (3/) mayoclinicproceedings.org/article/S0025-…
Read 8 tweets
It'sME(Jaime) Profile picture
Sep 26, 2023
Excellent, actually, from the RECOVER Mechanistic Taskforce: . 🧵elifesciences.org/articles/86043
"We... emphasize the need to build on and complement, rather than merely repeat, existing research from similar conditions, such as #MECFS, #Lyme disease, #dysautonomia..." (2/)
"Further exacerbating PASC’s time pressure is the NIH’s historic underfunding of overlapping illnesses with potential post-viral origins that have extremely similar phenotypes to #LongCOVID (Komaroff, 2019). If research for diseases such as #MECFS... (3/)
Read 11 tweets
It'sME(Jaime) Profile picture
Sep 25, 2023
Let's talk about the UK's Science Media Centre and its history.

The Centre calls itself "an independent press office for science, working closely with press officers from universities, scientific companies, research funders &leading science and engineering institutions."
The SMC is a publicly-funded PR group, representing influential corporations whose financial interests are threatened by the interests of the public.

Connie St. Louis, then president of the Association of British Science Writers, said: "Perhaps the greatest tragedy, or item of public interest, has been the complicity of successive scientifically illiterate UK governments, which have donated nearly half a million pounds of public funds to this dishonest endeavor." -- St. Louis, source: https://archives.cjr.org/the_observatory/science_media_centers_the_pres.php
St. Louis performed a study on SMC. Over half the SMC’s "expert reactions" were covered in the press and "in 23% of the stories... the only quotes were those that came from the centre."

“Whatever the SMC delivered to them is what they used,” she said. tinyurl.com/2hhf562n
Read 25 tweets
It'sME(Jaime) Profile picture
Sep 5, 2023
Baffling decision by @NIH's National Institute on Minority Health and Health Disparities (@NIMHD): disabled people don't "count" as a minoritized population with greater health disparities than able-bodied folks.

They explained their decision by... (1/4) 🧵
...stating that disabled people don't always face inequities.

An unusual claim, since multiple studies have found & documented such inequities and disparities.

The NIH Working Group for Individuals with Disabilities Appendix C has the receipts: (2/3) acd.od.nih.gov/documents/pres…
No one on the committee making the decision that disabled people are not a population that faces healthcare inequities identified themselves as a person living with a disability.

This is why we say, "nothing about us without us." (3/4)
Read 8 tweets

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