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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Have you ever wondered what the difference is between post-exertional malaise (PEM) & post-exertional symptom exacerbation (PESE) in myalgic encephalomyelitis (M.E.)? @sunsopeningband explains it in a clear and elegant nutshell.
M. and S. Shaw retweeted
I know that everyone is focused on Trump's attacks in California and Alaska. My team is fighting in court in both places.
But the fight for free and fair elections is much broader. Elias Law Group is currently litigating 92 voting and election cases in 42 states plus DC.
M. and S. Shaw retweeted
PMC estimates that US SARS-CoV-2 transmission is higher than 62% of all days since pandemic onset. We are very much #DuringCOVID.
The current wave is atypical in two respects.
1) We have a pronounced double peak. The secondary rise in early October violates historical trends.
2) Real-time data quality are terrible. About 1-in-6 CDC contractor sites are offline while a contractor issue is resolved. Additionally, each of the past 6 weeks, the CDC has retroactively corrected levels upward. The magnitude and scope of the corrections are highly atypical. In each case, the corrections go back until early July. In each case, levels increase about 25-40% between the time they are reported and two weeks later, with additional upward corrections as time goes by. These are not one-off corrections, and hence, not related to the twice-annual calibration process or specific sites coming online. It's basically like a balloon is sitting under the wave, and each week, the balloon gets inflated a little more, pushing each phase of the wave higher and higher, week after week. We've added a new feature to our diagnostic systems and hope to have more insight into that soon. Expect that the wave shape may look vastly different in a couple months when the full delayed data come in.
THREAD (2/4)
ALT Forecast, showing recent (apparent) double peak.
ALT Year over year graph, again showing the atypical pattern
ALT Barometer: Levels higher than 62% of all days since pandemic onset
ALT 13 waves. The double peak is highly compressed.
M. and S. Shaw retweeted
In a little-noticed webpage update, the Environmental Protection Agency has announced a plan to decommission its online web archive at the end of the year, a move that would wipe tens of thousands of publicly available environmental resources from the web. motherjones.com/environment/…
M. and S. Shaw retweeted
Not enough focus on the hopelessness here. People aren’t just exhausted; they’re suffering and hopeless and many are “choosing” euthanasia, while
no one takes accountability.
Opinie: Een jaar na het eerste PAIS-protest in Den Haag is het nog steeds donker
volkskrant.nl/columns-opinie…
#longcovid #longcovidnieuws
M. and S. Shaw retweeted
We’re really pleased that our MP email template has been supported by wider ME organisations via Forward ME 🫶
If you have the energy, you can help support @BethDobbin’s call for ME research funding by writing to your MP. More here 👇
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research.
We are working with her to amplify her message, and you can help (if capacity allows).
Write to your MP to back her call - and to make things easier, we have a template for you.👇
ALT Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"
M. and S. Shaw retweeted
I believe this will be considered one of the most important videos in US history from this time.
M. and S. Shaw retweeted
Im apart of the UCSF trial in San Francisco. The Los angeles one i was told I was apart of, just needed the final screening has been delayed for the last year and still has no resume date. So i reached out to UCSF and made it into their trial. I get two injections of Anktiva 2 weeks apart with 5 follow up visits over 75 days. Its only Anktiva! I know the Los Angles site is allowing up to 8 doses i think but this UCSF trial is capped at 2. As much as i wish i was getting more, there has to be some reason why they kept it at 2 at UCSF. They are one of the top Long Covid researchers in the world so im grateful/trust that the 2 doses will provide relief for Long Covid
M. and S. Shaw retweeted
The recirculation "feature" in cars is extremely dangerous. It increases risk of SARS-CoV-2 transmission immensely in rideshares. The CO2 level itself also promotes drowsiness and cognitive dysfunction, risk factors for accidents. If you have a CO2 monitor, use it while driving with recirc on for 15 mins. You will not be able to unsee the result, and I doubt you will ever do it again.
M. and S. Shaw retweeted
⚠️ TEXAS VOTER ALERT: Multiple voters in Bexar County report touchscreen voting machines switching their selections from Democrat Gina Hinojosa to Republican Greg Abbott and from Democrat James Talarico to Republican Ken Paxton, with some voters having to correct their choices repeatedly, according to KSAT.
Election officials blame likely touchscreen sensitivity or user error and say they’re investigating the complaints.
No deliberate tampering has been established. CHECK EVERY SELECTION AND YOUR PRINTED BALLOT BEFORE CASTING IT. If anything is wrong, alert a poll worker immediately. Once your ballot is cast, you cannot correct it.
M. and S. Shaw retweeted
Please wake me up from this nightmare.
science.org/content/article/…
M. and S. Shaw retweeted
"Stop calling us 'PAIS patients.' Patients receive care. We are left to fend for ourselves." Good point.
M. and S. Shaw retweeted
The scrambled eggs at a hotel breakfast are 19% water, and they're dyed.
A lot of hotels and cafeterias pour them from a carton of Papetti's Breakfast Blend. The spec sheet reads whole eggs, 19% water, then under 2% of salt, xanthan gum, citric acid, annatto color and natural butter flavor. Papetti's is part of Michael Foods, one of the biggest egg processors in the country.
Every ingredient has a job on a steam table. Xanthan gum holds the added water in the egg so it doesn't weep into the pan. Citric acid keeps the eggs from turning gray or green under a heat lamp. Annatto puts back the yolk color the water washed out. The butter flavor is there because nobody is going to add butter. The carton keeps for 98 days in the cooler.
The plain version from the same company is whole eggs, whey, skim milk, xanthan and citric acid, with almost no added water and half the sodium.
M. and S. Shaw retweeted
Wenn ihr euch mit ME/CFS beschäftigt, dann schaut nicht nur auf die Erkrankung und das unvorstellbare Leid der Betroffenen.
Beschäftigt euch auch mit dem medizinischen Skandal dahinter: jahrzehntelange Stigmatisierung, fehlende Forschung und eine katastrophale Versorgung.
Das darf nicht länger ignoriert werden.
M. and S. Shaw retweeted
Anne lebt mit ME/CFS in einem dunklen Raum, komplett isoliert. Sie kann nicht allein essen, nicht zur Toilette – wie hält man das aus? trib.al/QiUFK28
M. and S. Shaw retweeted
I'm so impressed with CC people in their 20s and 30s. Developmentally, it's just a very difficult time in general, focused on "launching," so there is a lot of pressure surrounding relationships, education, and work.
Since pandemic onset, you have lived through immense threats, which much of society stopped acknowledging in 2022. That can create immense stigma, isolation, and alienation. You may be dealing with health issues or caregiving for family earlier than anticipated, or both.
These challenges are often much harder if money is especially tight, or you're a part of an underrepresented or minoritized group or groups. It's just difficult in so many way.
Anyway, you're the best. I see you. You're way ahead of your time. Keep fighting. 💪😷
M. and S. Shaw retweeted
I felt pressured to push through this illness and “walk my way out of it” so I decided to do 10,000 steps and I ended up crying in a field and had to get picked up. I was then in PEM for a solid 3 months from that walk alone. Don’t listen to Drs on here telling you to exercise.
M. and S. Shaw retweeted
We are trying to get a clearer picture of the relationship between ME/LC and connective tissue disorder. If you are affected by this combination, we would be grateful if you could take the poll and if possible provide details. Retweets also much appreciated, to increase reach! 🙏🙏🙏
If you have #ME or #LongCovid AND (suspected) #hEDS or another connective tissue disorder: Did you already have signs of hypermobility, joint or muscle pain, easy bruising, or other connective tissue symptoms BEFORE developing ME or LC?
Comments are much appreciated!
58%yes
19%no
23%👀
278 votes • Final results
