Maya
@MayaLongCovid
RWJF ClinicalScholars Alum, School Nurse, scientific diver/ocean lover stranded by #longcovid 3/2020 & #ME, #POTS, #MCAS #hEDS #Chiari. #healthequity 🍉
So honored to represent the patient community. Here are some parts of the interview @wearlumia
Meet Maya: After COVID in 2020, @MayaLongCovid went from diver & school nurse to bedbound with ME/CFS, POTS & MCAS. Now, she serves on Lumia’s PAC, bringing the chronic illness community’s voice forward. Read her story: tinyurl.com/wearlumia #longcovid #pots #wearlumia #pwME
I'm not sure that people realize how abnormal it is for journalists to be killed in wars. More have been killed in Gaza (232) than in the Civil War, World Wars I and II, the Korean War, the Vietnam War (+Cambodia and Laos), the Yugoslav wars, and the Afghanistan war, combined.
Breaking: An Israeli airstrike just killed Adam Yahya Abu Harbid, a cameraman for Al-Quds Al-Youm channel, along with all members of his family, after targeting their tent in Al-Yarmouk market in Gaza City.
Learn more about our new medical coaching program in 15 minutes!
6. We will add 1-2 spaces weekly as capacity allows. Fill out this interest form forms.gle/EXGMnCAEn4AiSC… to join the waitlist and join us on this webinar tinyurl.com/3ezbcwbc, Friday Jul 25, 2025 to hear more details on how the program will function
How can you look at what’s happening in Gaza right now and call it anything less than a holocaust
Please read this important announcement - Renegade Research (the org over #RemissionBiome & other patient-led tests/research projects) will be offering medical coaching and consulting for patients with ME/CFS and Long COVID. Sign up now and attend the webinar! Spots are limited!
Announcement!! 1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows! We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC
The BMJ @bmj_latest has not published a rapid resopnse from Maeve Boothby O'Neill's mum, Sarah, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here: virology.ws/2025/07/23/tri…
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. The plan changes nothing now. “There are no commissioned services, so clinicians can’t practice this medicine within it. That forces both doctors and patients into the private sector.”
Rutgers: 'Research: Vigilance Needed for Long COVID in Young Kids' "We are working hard to characterize long COVID in children and it will be critical for policymakers to assure that we have adequate resources to support and manage these children now..' miragenews.com/research-vigil…
The genocide of the people of Gaza continues as members of congress vote to fund Israel’s defensive and offensive military capabilities. This is immoral and no amount of excuses will ever make it ok.
Hundreds of Israelis are now marching in the center of Tel Aviv against the starvation of Gaza at the hands of the Israeli government. Some are holding sacks of flour.
LOUDER FOR THE PEOPLE IN [your supposed corner who seem to take every opportunity to stab you in] THE BACK
The genocide of the people of Gaza continues as members of congress vote to fund Israel’s defensive and offensive military capabilities. This is immoral and no amount of excuses will ever make it ok.
"Imagine being so harmed by an infection that everyone around you refers to as harmless that you can’t walk more than 500 steps a day. Imagine you have to plan your week around taking a shower (sitting down)." thegauntlet.news/p/the-pandemic…
Announcement!! 1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows! We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC
#TheAcidTest2? People with Long COVID and ME/CFS, would you want to participate in a study using continuous lactate monitors? The monitor would be similar to the CGMs available now & would be provided free. It would require daily symptom tracking & wearing the sensor for 30…
DWP internal documents show Labour assurances on Universal Credit cuts are worthless Internal WCA assessor training obtained by the Canary just blew a hole in Labour's assurances on fluctuating conditions under the Welfare Bill. @h_sharland reports: thecanary.co/uk/analysis/20…
An FOI by @StripyLightCIC revealed training materials used by the DWP to train healthcare profs who conduct assessments promote a discredited biopsychosocial view of ME/CFS, contradicts the 2021 NICE guideline & encourages assessors to doubt the physical reality of symptoms.
Excellent article from @h_sharland and @TheCanaryUK We were shocked, though not surprised, to see the contents of the FOI documents. Page 15...... (link to doc is on article). #pwME #MEcfs #Politics #TakingThePIP #WelfareCuts
OMF has raised $1,000,000 out of $2,432,000 to test 1200 samples (600 ME/CFS clinically diagnosed CCC Samples) for 10K proteins, metabolites, cytokines, lipids. *A biomarker signature can be validated and commercialized into a blood test. 👇Donate omf.ngo/me-cfs-new-bio…
Listen! Isla is gone. She is in heaven now. She was not believed and was placed under a Child “Protection” Plan for 9 months, carrying the distress of seeing her own caring family falsely accused. She is not the only case, and she will not be the last. To those who caused this,…
Refusal to acknowledge Isla's symptoms, refusal to provide home tuition. Accusations of prefabricated illness (couldn't even get the term right), 9 months of Isla being on a Child Protection plan, 0 support, 0 compassion and hardly any learning.
⁉️📣 Calling those with #LongCOVID, #MECFS, or #POTS who have tried Guanfacine — how did your symptoms change overall? If you experienced improvements or worsening, let us know which symptoms changed for you in the comments. Please share 🙏 @patientled @ahandvanish…