
Person w/ severe #MyalgicEncephalomyelitis #MyalgicE (ME/cfs) #POTS #MCAS & her ME advocate spouse/caregiver. Before: Architect, software interaction designer.
United States
Joined October 2015
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- Following3.1K
- Followers1.6K
- Likes93.4K
M. and S. Shaw retweeted
The largest and longest study to date (18.3 million adults) tracking the relationship between COVID-19 and neurodegenerative disorders found that contracting COVID-19 SIGNIFICANTLY increases the risk of developing cognitive impairment and dementia.
đđđ
M. and S. Shaw retweeted
Ahead of the election, a Connecticut FBI field office posted that the election was on Wednesday. As an old-school Southern Voting Rights lawyer, I've seen that tactic used many times to suppress the vote. The post was still up Tuesday morning. It's since been deleted. If it was an unintentional error, it would have been down in minutes. Serious investigation needed here. @jamie_raskin
M. and S. Shaw retweeted
â⊠hospital continues to refuse the syringe driver granted to palliative care patients. Savannah is labelled as difficult because she darenât waste energy speaking to psychologists (who at QE Hospital suggested her physical challenges are due to e.g. âbeing the middle childâ).â
Update on Savannah. I have no words, except to echo the last line, "Do we all have to be Olympian to be believed?"
gofundme.com/f/severemergencâŠ
M. and S. Shaw retweeted
Thank you to @BethDobbin for making the case for action so clearly on @GMB today. đ
People with ME need fairly funded research and the hope that treatments will be developed.
We hope @edballs is right!
M. and S. Shaw retweeted
Replying to @DrCatharineY @AnnieAndrewsMD
If you are doing state legislatures, then add this doctor from my district:
Theresa Brooks | Michigan Senate
Physical Medicine and Rehabilitation physician
M. and S. Shaw retweeted
Here is a comprehensive list of scientists and medical doctors confirmed so far to have been elected or reelected last night, across both parties and at the federal and state levels:
U.S. SENATE
Dr. Annie Andrews | South Carolina
@AnnieAndrewsMD | Pediatrician
Dr. Abdul El-Sayed | Michigan
@AbdulElSayed | Physician and epidemiologist
GOVERNORS
Dr. Amy Acton | Ohio
@AmyActonOH | Physician and former state health director
Dr. Josh Green | Hawaii
@GovJoshGreenMD | Physician
U.S. HOUSE: MEDICAL DOCTORS
Dr. Ami Bera | California
@RepBera
Dr. Richard Pan | California
@DrPanMD
Dr. Raul Ruiz | California
@RepRaulRuizMD
Dr. John Cowan | Georgia
@DrJohnCowan
Dr. Rich McCormick | Georgia
@RepMcCormick
Dr. Kelly Morrison | Minnesota
@kellymorrisonmn
Dr. Bob Onder | Missouri
@BobOnderMO
Dr. Herb Conaway | New Jersey
@RepHerbConaway
Dr. Adam Hamawy | New Jersey
@HamawyForNJ
Dr. Maxine Dexter | Oregon
@RepDexterOR
Dr. John Joyce | Pennsylvania
@RepJohnJoyce
U.S. HOUSE: SCIENTISTS AND MATHEMATICIANS
Dr. Jasmine Clark | Georgia
@jasmineforga | Microbiologist
Daniel Biss | Illinois
@DanielBiss | Mathematician
Sean Casten | Illinois
@RepCasten | Biochemical engineer and scientist
Dr. Bill Foster | Illinois
@RepBillFoster | Physicist
STATE LEGISLATURES
Dr. Jarod Fox | Florida House
Infectious disease physician
Amanda Hemmingsen-Jaeger | Minnesota Senate
@Amanda_MNHouse | Former forensic scientist
M. and S. Shaw retweeted
Replying to @ThereForME_UK @DHSCgovuk
3/4 "While the [draft] foreword frames the plan as "co-produced" most of the major suggestions that have been made by the Task & Finish Group members, and through the public consultation [...] have not been taken forward"
M. and S. Shaw retweeted
2/4 Before the plan was published we made this exact point clear to @DHSCgovuk and language around co-production of the plan did not appear in the final draft.
In feedback sent to DHSC on 16 June 2025 we said...
M. and S. Shaw retweeted
1/4 đą A short statement from ThereForME:
We wanted to be very clear, following the health minister @JamesFrith's comments on @GMB this morning that we do not agree that the Final Delivery Plan for ME was co-produced with orgs representing people with ME.
M. and S. Shaw retweeted
Maybe Lisa Simpson can get this point across to #RECOVERTLC. I tried. đ
#LongCovid #LongCovidKids #MECFS
M. and S. Shaw retweeted
Long Covid friends, please do this.
Also, pressure #RECOVERTLC to figure out a strategy to handle PEM/PENE, or they will waste whatever you propose on an inadequate study design and poorly conceived end point measures.
#LongCovid community, we need your help! We are so close to reaching 500 cases. Once we reach this first milestone we plan to take a preliminary look at the data. Can you help us get from 473 cases to 500? We hope your experiences will help inform drugs studied in #RECOVERTLC.
M. and S. Shaw retweeted
Thank you @NIHDirector_Jay for your opening #RecoverTLC meeting remarks. I wish the following speakers were as ambitious: over an hour in, it's data with no science impact: website metrics, slides on NUMBER OF MEETINGS, explaining to highly informed audience how trials work? 1/x
M. and S. Shaw retweeted
The excellent post below gives credit where its due because Obama was a critically important leader during the mid terms campaigns. He reminded Americans that our civic engagement is necessary to effectuate change.
HOMMAGE Ă BARACK OBAMA : Lâarchitecte de lâespoir et le gardien de la dĂ©mocratie participative amĂ©ricaine.
Alors que les Ătats-Unis viennent de vivre des Ă©lections de mi-mandat historiques, un nom rĂ©sonne avec une force particuliĂšre : celui de Barack Obama. Loin dâĂȘtre une simple figure de rappel, le 44e prĂ©sident des Ătats-Unis sâest imposĂ© comme le fer de lance dâune bataille pour lâĂąme de la dĂ©mocratie amĂ©ricaine, rappelant Ă tous que le pouvoir rĂ©side avant tout dans lâengagement citoyen.
Ă lâapproche du scrutin du 3 novembre 2026, face Ă une administration Trump contestĂ©e, Barack Obama a rĂ©pondu prĂ©sent. Il ne sâest pas contentĂ© de soutenir des candidats ; il a insufflĂ© une Ă©nergie vitale Ă tout un parti. Se dĂ©ployant dans des Ătats clĂ©s comme la GĂ©orgie, le Michigan ou lâOhio, il a tenu une sĂ©rie de meetings oĂč son Ă©loquence a de nouveau fait mouche. Son objectif Ă©tait limpide : transformer la lassitude et la colĂšre des Ă©lecteurs en une force de changement constructif. Comme il lâa lui-mĂȘme dĂ©clarĂ© : « Partout dans le pays, jâai entendu des gens qui en ont assez de ce quâils voient de la part des politiciens en ce moment. En ce jour dâĂ©lection, nous avons le pouvoir de voter pour les candidats qui apporteront le changement dont nous avons besoin ».
Son implication nâĂ©tait pas seulement stratĂ©gique ; elle Ă©tait profondĂ©ment personnelle et incarnĂ©e. Il a su crĂ©er un lien unique, nâhĂ©sitant pas Ă lâhumour pour dĂ©samorcer les critiques, comme lorsquâil a taquinĂ© son Ă©pouse Michelle pour mieux souligner lâimportance du dĂ©bat dâidĂ©es au sein de la famille dĂ©mocrate.
Mais au-delĂ de la campagne, lâhĂ©ritage le plus prĂ©cieux dâObama rĂ©side dans sa vision inĂ©branlable dâune dĂ©mocratie participative. Pour lui, le vote nâest pas une fin en soi, mais le point de dĂ©part dâune responsabilitĂ© collective. Il a toujours dĂ©fendu lâidĂ©e que le changement ne vient pas dâen haut, mais de lâengagement de chaque citoyen. Comme il lâa si souvent rappelĂ©, « le changement ne se produit que lorsque des gens ordinaires sâimpliquent, sâengagent et se rassemblent pour lâexiger ».
Cette foi en la participation citoyenne, il lâa de nouveau exprimĂ©e avec force lors de ces midterms. Il a exhortĂ© les AmĂ©ricains Ă ne pas cĂ©der au cynisme et Ă utiliser leur voix comme une arme pacifique mais puissante. « Ils ne peuvent pas entendre vos huĂ©es, mais ils peuvent entendre votre vote » , a-t-il lancĂ© lors dâun rassemblement en GĂ©orgie, transformant la frustration en une action dĂ©mocratique concrĂšte. Il a ainsi dĂ©fini ce scrutin comme « notre derniĂšre et meilleure chance de le contenir » , faisant du vote le disjoncteur essentiel pour rĂ©tablir la responsabilitĂ© Ă Washington.
Au lendemain de la victoire dĂ©mocrate, Obama nâa pas cĂ©dĂ© Ă la triomphalisme. Son message a Ă©tĂ© celui dâun homme dâĂtat, tournĂ© vers lâavenir et le bien commun. Il a interprĂ©tĂ© le rĂ©sultat des urnes comme un appel clair du peuple amĂ©ricain : « Ce soir, le peuple amĂ©ricain a envoyĂ© un message clair : il veut une politique qui rassemble les gens plutĂŽt quâelle ne les divise, et des dirigeants qui offrent des solutions concrĂštes aux dĂ©fis auxquels ils sont confrontĂ©s ».
Barack Obama reste, plus que jamais, une boussole morale et un catalyseur dâengagement. Son implication dans ces Ă©lections de mi-mandat nâĂ©tait pas seulement celle dâun ancien prĂ©sident venant prĂȘter main-forte Ă son parti ; câĂ©tait celle dâun citoyen convaincu que la dĂ©mocratie est un jardin qui ne fleurit que si chacun accepte dây planter et de lâentretenir. En rappelant que « notre dĂ©mocratie a besoin de vous, pas seulement quand il y a une Ă©lection », il nous lĂšgue la clĂ© de sa pĂ©rennitĂ© : une foi active et exigeante en la participation de tous.
Tout mes Respects Monsieur le PRĂSIDENT @BarackObama
M. and S. Shaw retweeted
HOMMAGE Ă BARACK OBAMA : Lâarchitecte de lâespoir et le gardien de la dĂ©mocratie participative amĂ©ricaine.
Alors que les Ătats-Unis viennent de vivre des Ă©lections de mi-mandat historiques, un nom rĂ©sonne avec une force particuliĂšre : celui de Barack Obama. Loin dâĂȘtre une simple figure de rappel, le 44e prĂ©sident des Ătats-Unis sâest imposĂ© comme le fer de lance dâune bataille pour lâĂąme de la dĂ©mocratie amĂ©ricaine, rappelant Ă tous que le pouvoir rĂ©side avant tout dans lâengagement citoyen.
Ă lâapproche du scrutin du 3 novembre 2026, face Ă une administration Trump contestĂ©e, Barack Obama a rĂ©pondu prĂ©sent. Il ne sâest pas contentĂ© de soutenir des candidats ; il a insufflĂ© une Ă©nergie vitale Ă tout un parti. Se dĂ©ployant dans des Ătats clĂ©s comme la GĂ©orgie, le Michigan ou lâOhio, il a tenu une sĂ©rie de meetings oĂč son Ă©loquence a de nouveau fait mouche. Son objectif Ă©tait limpide : transformer la lassitude et la colĂšre des Ă©lecteurs en une force de changement constructif. Comme il lâa lui-mĂȘme dĂ©clarĂ© : « Partout dans le pays, jâai entendu des gens qui en ont assez de ce quâils voient de la part des politiciens en ce moment. En ce jour dâĂ©lection, nous avons le pouvoir de voter pour les candidats qui apporteront le changement dont nous avons besoin ».
Son implication nâĂ©tait pas seulement stratĂ©gique ; elle Ă©tait profondĂ©ment personnelle et incarnĂ©e. Il a su crĂ©er un lien unique, nâhĂ©sitant pas Ă lâhumour pour dĂ©samorcer les critiques, comme lorsquâil a taquinĂ© son Ă©pouse Michelle pour mieux souligner lâimportance du dĂ©bat dâidĂ©es au sein de la famille dĂ©mocrate.
Mais au-delĂ de la campagne, lâhĂ©ritage le plus prĂ©cieux dâObama rĂ©side dans sa vision inĂ©branlable dâune dĂ©mocratie participative. Pour lui, le vote nâest pas une fin en soi, mais le point de dĂ©part dâune responsabilitĂ© collective. Il a toujours dĂ©fendu lâidĂ©e que le changement ne vient pas dâen haut, mais de lâengagement de chaque citoyen. Comme il lâa si souvent rappelĂ©, « le changement ne se produit que lorsque des gens ordinaires sâimpliquent, sâengagent et se rassemblent pour lâexiger ».
Cette foi en la participation citoyenne, il lâa de nouveau exprimĂ©e avec force lors de ces midterms. Il a exhortĂ© les AmĂ©ricains Ă ne pas cĂ©der au cynisme et Ă utiliser leur voix comme une arme pacifique mais puissante. « Ils ne peuvent pas entendre vos huĂ©es, mais ils peuvent entendre votre vote » , a-t-il lancĂ© lors dâun rassemblement en GĂ©orgie, transformant la frustration en une action dĂ©mocratique concrĂšte. Il a ainsi dĂ©fini ce scrutin comme « notre derniĂšre et meilleure chance de le contenir » , faisant du vote le disjoncteur essentiel pour rĂ©tablir la responsabilitĂ© Ă Washington.
Au lendemain de la victoire dĂ©mocrate, Obama nâa pas cĂ©dĂ© Ă la triomphalisme. Son message a Ă©tĂ© celui dâun homme dâĂtat, tournĂ© vers lâavenir et le bien commun. Il a interprĂ©tĂ© le rĂ©sultat des urnes comme un appel clair du peuple amĂ©ricain : « Ce soir, le peuple amĂ©ricain a envoyĂ© un message clair : il veut une politique qui rassemble les gens plutĂŽt quâelle ne les divise, et des dirigeants qui offrent des solutions concrĂštes aux dĂ©fis auxquels ils sont confrontĂ©s ».
Barack Obama reste, plus que jamais, une boussole morale et un catalyseur dâengagement. Son implication dans ces Ă©lections de mi-mandat nâĂ©tait pas seulement celle dâun ancien prĂ©sident venant prĂȘter main-forte Ă son parti ; câĂ©tait celle dâun citoyen convaincu que la dĂ©mocratie est un jardin qui ne fleurit que si chacun accepte dây planter et de lâentretenir. En rappelant que « notre dĂ©mocratie a besoin de vous, pas seulement quand il y a une Ă©lection », il nous lĂšgue la clĂ© de sa pĂ©rennitĂ© : une foi active et exigeante en la participation de tous.
Tout mes Respects Monsieur le PRĂSIDENT @BarackObama
M. and S. Shaw retweeted
âThis health issue has nothing out there for you⊠There are specialist clinics, but they donât have any doctors⊠Itâs life decimating. Iâm in bed 22 hours of the dayâ
Former Olympic sprinter @BethDobbin on her letter calling on PM Andy Burnham for more #MECFS research funding.
M. and S. Shaw retweeted
Thanks for covering this, @susannareid100. A major reason for the lack of treatments for ME/CFS has been the focus on psychological treatments.
You covered the 2009 NICE legal challenge on BBC Breakfast. They withdrew the treatments in 2021.
teapawt.net/abrokenbattery/status/âŠ
âThis health issue has nothing out there for you⊠There are specialist clinics, but they donât have any doctors⊠Itâs life decimating. Iâm in bed 22 hours of the dayâ
Former Olympic sprinter @BethDobbin on her letter calling on PM Andy Burnham for more #MECFS research funding.
M. and S. Shaw retweeted
University of Bristol researchers studied 18.3 million adults and found cognitive impairment remained elevated for at least 5 years after COVID-19.
Risks were generally higher in unvaccinated and hospitalized patients.
medrxiv.org/content/10.64898âŠ
M. and S. Shaw retweeted
Iâm a cardiologist. A 24-year-old former Division I field hockey player in âperfect healthâ just died two miles from the NYC Marathon finish line. Her heart didnât fail first. Her muscles did.
She collapsed at Mile 24 after texting her dad âOwâ and âOw ow.â Six hours of CPR and hospital efforts couldnât save her. This is rhabdomyolysis â and it can kill even the fittest athletes.
24-year-old Rachel Apa dies after collapsing in Central Park just two miles from completing the New York City Marathon.
Her parents say they were tracking her on the marathon tracking app when she stopped moving at Mile 24.
"Final stretch," her father texted her at Mile 23, but she never replied.
Her parents say they were waiting at Mile 25 and tracking her on the app, but noticed she stopped moving at Mile 24.
After a few minutes, they headed to Mile 24, where they found an ambulance pulling out.
According to The New York Times, Apa collapsed before a social worker ran over and tried to find a pulse. Three people took turns trying to resuscitate her.
She was taken to Mount Sinai Medical Center, where doctors spent six hours trying to save her life.
Apa's father says she died from rhabdomyolysis, a condition that can be caused by exertion, in which skeletal muscle rapidly disintegrates and poisons the blood.
"Itâs unfathomable. Perfect health, perfect shape, 24 years old," her father said.
Apa played field hockey at Bucknell University and ran the race for her grandfather, who died from Parkinsonâs disease.
M. and S. Shaw retweeted
Marathon medical teams see dozens of rhabdo cases every year. Most survive. This one didnât.
Rachel was smiling at Mile 14. Beaming. Two miles from the finish, the tracker stopped. Bystanders and doctors fought for her for hours. It wasnât enough.
Rest in peace, Rachel. The heartbreak is how close she was â and how preventable this can be when the warning signs are treated as the emergency they are.
Runners: if it hurts more than it should, stop. Your finish time is not worth your life.




























