Its ME Matina

64.8K posts

Its ME Matina

Its ME Matina

@justask

#MyalgicE Patient Advocacy 4 better treatment & cure. UR life/dreams are gone before ur eyes! Federal Advocacy Research Education & Funding #Dysautonomia

USA Katılım Temmuz 2007
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S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic
Disagreements, arguments and failed treatment trials in #LongCOVID (but also #POTS and #MECFS) indicate that first and foremost, the pathophysiology of Long COVID, dysautonomia and ME/CFS is complex and affects multiple organs and systems, but "cures" will only come when we target the #neuroimmune pathophysiology - aka the brain and the immune system. Those two factors are the reasons why there is multi-systemic and multi-organ involvement. It's highly unlikely to be "viral persistence" as a major mechanism though viral persistence can play a role if your immune system is unable to effectively clear the virus. Curative therapies will only come when we target "neuroimmune" mechanisms; everything else we trial in studies or clinical practice (ivabradine, beta blockers, salt, Mestinon, midodrine, LDN, etc. etc) is symptomatic treatment, which is also needed, but is not going to be "highly effective." tandfonline.com/doi/full/10.21…
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PZ *ME Lobbyist*
PZ *ME Lobbyist*@pzneedsrest·
I saw someone suggest that pw moderate ME care for pw severe ME This is a total misunderstanding of ME. I have "moderate" ME (mostly houseb). I can hardly take care of myself. Nobody with ME can properly care for anyone else without risking deterioration.
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Its ME Matina@justask·
@pzneedsrest 100 percent agree! No way a moderate person with ME can’t take care of a severe ME person
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🕸️Dr.T, PhD
🕸️Dr.T, PhD@chydorina·
We need a MECFS organization that is actually an acute-care research hospital. A place where there are doctors and nurses and associated medically trained staff. Patients would be airlifted there and cared for through the 'very-severe' stages. Once survival would be possible back at home - with proper ongoing distance care - they would be discharged. It would double as an 'extreme cases' MECFS research center - and it is from these extreme cases where the biggest breakthroughs will be made. Personally when I think of what type of advocacy organization I would want to financially support - this is what it would be. I believe many of the people that have decided to die (or those that died in regular hospitals from mistreatment) would not have if a place like this was available. If I was not sick myself this is what I would start. An actual global medical/research facility for the most severe cases.
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S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic
Our small unfunded study on gluten-free diet in POTS remains the ONLY data we have on this topic 5 years later! If people criticize it, they're welcome to do a better study. Until then, we continue to recommend a trial of gluten-free diet at our clinic. journals.sagepub.com/doi/10.1177/17…
Todd Davenport@sunsopeningband

I’ve long since made my peace with the fact that sometimes we have to do small, noisy studies in order to justify doing larger, better powered studies. And for the correct audience, hyping the small, noisy studies can help develop buy-in for doing larger, better powered studies.

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🕸️Dr.T, PhD
🕸️Dr.T, PhD@chydorina·
"They are purposefully keeping us sick". It seems insane but the last decade has shown us it is not. What is being tested is weak and lacks rigor right out of the gate.
Michael ⚕️🦁@MichaelCWilder

We know from both HIV and Hepatitis C that combination antiviral therapy for months is a NO BRAINER. The fact they are doing trials with one antiviral for 25 days show they are purposely keeping people sick. These people should be prosecuted as criminals.

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Michael ⚕️🦁
Michael ⚕️🦁@MichaelCWilder·
We know from both HIV and Hepatitis C that combination antiviral therapy for months is a NO BRAINER. The fact they are doing trials with one antiviral for 25 days show they are purposely keeping people sick. These people should be prosecuted as criminals.
Covid Analysis: 200+ COVID-19 treatments@CovidAnalysis

This week in illogical clinical trials: RECOVER-VITAL shows no benefit for long COVID with 15-day or 25-day paxlovid. Results appeared in the registry 15 months after primary completion, with no publication or announcement. c19early.org/zimmerman2.html Four trials have tested paxlovid for long COVID treatment: three show no benefit and one remains unreported. While authors did not publish the results, they published a paper this month that states: “While the STOP-PASC and PAX LC trials did not demonstrate a positive effect on Long COVID, the RECOVER-VITAL study remains a critical addition to the field and still has potential for demonstrating effect…” journals.sagepub.com/doi/10.1177/17… 🧵

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🕸️Dr.T, PhD
🕸️Dr.T, PhD@chydorina·
Those that scream the loudest are often found to be liars. Don't let yourself get caught up in witch hunts. You will have to live with your actions for all time and we will all have to live with the consequences. Be honorable. Be kind. Have integrity.
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Suzan Jackson
Suzan Jackson@livewithmecfs·
Listened to this short, informative interview with the fabulous Dr. Peter Rowe, who helped my sons so much in the early years (and me, too). If you are in need of some hope, watch this and hear his thoughts about ME/CFS research, new findings & the future: youtube.com/watch?v=zA3YV-…
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Whitney Dafoe
Whitney Dafoe@DafoeWhitney·
I can’t act.  I can think of worlds from simple to profound.  But I can’t act on making any of it.  So I sit and watch it.  And I watch the world pass by without it.  And without me.  This is the torture of #MECFS.  We are HERE and we are ALIVE but we cannot act on LIFE to LIVE.
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Suzan Jackson
Suzan Jackson@livewithmecfs·
Diagnosing and Treating Thyroid Dysfunction in ME/CFS, Long-COVID, Lyme & tick infections: Thyroid dysfunction is very common in these diseases since they mess with our endocrine system. Testing & treating is tricky, but I feel so much better now! Details: livewithcfs.blogspot.com/2023/10/diagno…
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Suzan Jackson
Suzan Jackson@livewithmecfs·
Exercise makes people with ME/CFS & long-COVID worse (PEM), but sometimes we NEED physical therapy for injury, surgery, or pain. I wrote Guidelines for PT for ME/CFS Patients to share w/physical therapists so they understand how to help within your limits. livewithcfs.blogspot.com/2016/05/physic…
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S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic
Great example why some of us do not publish in these so-called prestigious journals: not because our papers are bad, but because we don't have extra $7,350 to gift to Nature. 🙄😉
Ruslan Rust@rust_ruslan

I currently have three papers in review at "high impact" journals. One of them has been sitting there for two years. In that time my daughter was born and learned how to walk, but apparently publishing a PDF was still not possible for me. For another one, after four months in review the editor told me they cannot find a second reviewer and asked me to suggest more reviewers. A third one sent me a message in 2026 saying the PDF I uploaded was larger than 10 MB and that I should please reupload everything to make the file smaller. All of this just to eventually pay between 7,000 and 12,000 USD per paper so someone can officially approve that the science we do is "legitimate". Reminder: not a single reviewer will be compensated here. I still don't understand how we as scientists can collectively be so smart when doing science and still tolerate a system like this when it comes to sharing our findings. We should move to preprints plus open review, whether human or AI, asap. So frustrated about it. I'd suggest sharing your work on bioRxiv or medRxiv, reading and reviewing preprints when you can, and highlighting good research, especially if it is still a preprint. Try platforms like ResearchHub (that pay for peer review) and experiment with AI based reviewers for faster feedback. Instead I read this as a proposed "revolutionary" measure:

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Open Medicine Foundation
Open Medicine Foundation@OpenMedF·
From the OMF-supported MERC with @BatemanHorne: During a crash, #pwME may struggle to think or communicate clearly. Cards help patients point to needs like water, pain, light sensitivity, or emergencies. Find these cards in our Crash Survival Guide: bit.ly/44MgSS9
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Tom Kindlon
Tom Kindlon@TomKindlon·
Very sad to read of this 23-year-old with severe ME, ill since age 4. Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️ An example of the problem biopsychosocial models for ME/CFS cause. virology.ws/2026/03/13/tri… #MEcfs #PwME
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Suzan Jackson
Suzan Jackson@livewithmecfs·
Tired of tossing, turning & waking exhausted? ME/CFS & long-COVID sleep dysfunction is caused by endocrine dysfunction & can be corrected so sleep is natural, normal & refreshing. This helps everything! Here's why & how (perfect for sharing with doctors): livewithcfs.blogspot.com/2023/03/correc…
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