ME_CFS_patient

🎗️ ME/CFS
🧬 Triggered by SARS-CoV-2

#mecfs #longcovid #dysautonomia #pots #neuroinflammation

[Danilo.Buonsenso_Surf4Children @surf4children]

🚨‼️⁉️researchers and people living with #ME #MECFS #longcovid

I need your help.

do you think latent tuberculosis infection (LTBI) could be a good control group for the mentioned conditions to study blood biomarkers and more?

LTBI is a well established chronic infection but has no clinical impact on functioning. So I was giving a thought.

What do you think? and why?
Please help me reach as many feedbacks as possible

[Michael Stingl @neurostingl]

Das ist eine sehr spannende Studie, die auch zur neurologischen Symptomatik bei ME/CFS Fragen aufwirft - wenn ich als schlichter Neurologe das richtig verstehe.

Sie zeigt, dass es im Gehirn räumlich unterschiedlich organisierte neurovaskuläre "Ensembles" gibt.

1/n

[Michael Moran | APC Injury @internetuserf12]

The/my theory is that SARS2 antigen suppresses dendritic cell function in immune privileged sites(eyes, testes, brain, bone marrow, etc...) to sustain it's persistence in much the same way that other viruses/antigen persists. Here is a hypothesis paper from across the pond proposing something very similar.
https://t.co/SoV2zHrnzo

[ME_CFS_patient @arami1997]

"By now COVID is milder as a viral infection. [...] what do you think would change. It's an upper respiratory virus like any other now." Reading this hurts, because for many of us it hasn't been that mild at all.

[Danilo.Buonsenso_Surf4Children @surf4children]

our @HorizonEU proposal was rejected despite being basically outstanding.
this means that the winning process this year was either really a roulette or the winning project should be really a game changer in post infectious syndrome. let’s see, so curious to see who is winner. a political network or a real groundbreaking project?

[Romain @32Sfc46582]

Apparently, today is the day.

A friend rightly pointed out to me in private that today is Severe ME/CFS Day, yet almost no one but ME/CFS patients actually knows it...

Cruel, but true. Sick since at least January 2022, I’ve deteriorated very slowly, going from very mild to severe/very severe by March 2025 (though I can still eat and use the toilet on my own)
I’ve experienced every stage of the illness. And honestly, I miss the moderate stage terribly...
What does a severe ME/CFS day look like ?
- Waking up feeling awful at 10 a.m. after a night of "awake sleep."
- Taking meds for POTS and LDA they don't really work anymore, but you never know.
- Drinking a liter of water with electrolytes so I can use the toilet.
- My wife comes to give me a hug and brings me an apple in bed.
- Toilet.
- Twitter and https://t.co/4W5afXWo5u.
- A light lunch.
- Twitter.
- Waiting until 4 p.m. to eat two rice cakes. - Toilet.
- Twitter and https://t.co/4W5afXWo5u.
- My daughter brings me my meal tray.
- Brushing my teeth.
- Podcast until 10h30 p.m.
- Sleep medication.
- 10h30 p.m. to midnight: lying in the dark, thinking about my life before.

And the same day, over and over again. No joy, no happiness just survival. Honestly, it’s medieval torture. Without the death part. No, not the final breath yet. Apparently, we have to suffer more.

Always more.

And even then, I’m more of a "severe" case on the milder end of the spectrum. My thoughts go out to the very severe cases who are even less fortunate than I am.

[Danilo.Buonsenso_Surf4Children @surf4children]

it’s severe ME day but I try to respect every day the most long term impacting disease on quality of life i’ve ever seen in my clinical practice.
All my respect to this people, sometimes even adolescents.
I’m sorry we don’t have a cure yet

[ME_CFS_patient @arami1997]

@pausedME Congratulations

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

📢 A new small study from Germany involving 18 patients with #POTS + hEDS and 20 healthy controls, utilizing MRI of the middle cerebral artery (MCA) and lower-body negative pressure chamber showed that patients with POTS/hEDS experience significant decrease in MCA flow when negative low-body pressure is applied, leading to increased heart rate and breathing rate and decreased end-tidal CO2 compared to healthy controls.

❓ What does that mean? As other researchers have shown in the past and, as is confirmed by this new study, there is altered physiology in patients with POTS that is associated with reduced blood flow to the brain - aka cerebral hypoperfusion.

💡 One hypothesis that can be generated from this study is that heart rate and breathing rate increase disproportionally in patients with POTS/hEDS to preserve adequate blood flow to the brain.

🧠 What else does it mean? Many things! 😃

1⃣ Heart rate elevation and increased respiration rate are INVOLUNTARY and occur in response to pathophysiologic factors.
2⃣ You cannot change your heart rate and respiration rate with positive thinking and the "right attitude": heart rate and respiration are controlled by the brainstem and not the cortex where thought process lives - i.e. POTS is not anxiety, depression, fear, FND, etc.
3⃣ Compensatory attempt by the body to preserve blood flow to the brain is vastly different from healthy blood flow to the brain ➡️ Expect brain changes on a cellular level, which in turn result in brain symptoms experienced by the patients.
4⃣ This MRI finding of reduced MCA blood flow in patients with POTS/hEDS may be an objective biomarker of disease process if replicated in large studies➡️ Anyone who says "we don't have biomarkers" is not following the literature.
5⃣ We don't know what the CAUSE of this altered physiology is as there are likely many of these CAUSES, which all lead down the same path of cerebral hypoperfusion and neuroinflammation.
6⃣ I am very interested in THERAPEUTIC TRIALS targeting cerebral hypoperfusion, neuroinflammation and neuroimmune etiology. This is where we SHOULD be investing our resources and our funding!!!

https://t.co/p1COn6ouei

[Neurologist Mom @NeurologistMom]

“ME/CFS patients are similar to a critically ill patient 24 hours before they die, except they live like that for years and years.”

Dr. Ron Davis, Stanford University
#severemecfsday

[Manuel Ruiz @manruipa]

🔴 A new study in Nature may change the way we think about viral reactivation during severe COVID-19—and its possible relationship to Long COVID.

One sentence from the authors is particularly important:
“Our findings challenge the prevailing view that chronic viral reactivation is primarily a consequence of immunosuppression.”

Why?
Because they found frequent viral reactivations in immunocompetent patients during severe illness, associated with increased systemic inflammation.

This is something we have been arguing for a long time:
An immune system can be hyperactivated and, at the same time, progressively lose effective control of persistent viruses.

(1/19) 🧵

[Danilo.Buonsenso_Surf4Children @surf4children]

the @NEJM has rejected my response to their review on Functional disorders (a bad message for #mecfs) so I decided to publish here what I sent them:

To the Editor:

The excellent Clinical Practice review on fibromyalgia does not address how the diagnosis should be reconciled with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long Covid, two conditions with substantial symptomatic overlap and a shared central-sensitization framework. This omission is clinically consequential: a patient with three years of illness — well beyond the arbitrary chronicity threshold used for both entities — could meet criteria for ME/CFS¹ or the 2024 NASEM long Covid definition,² yet be classified solely as fibromyalgia if post-exertional malaise (PEM), orthostatic intolerance, and antecedent infection are never systematically elicited. Although neither condition yet has a cure, evidence for a post-infectious origin and shared immunometabolic abnormalities is accumulating.³ Unlike fibromyalgia's ACR criteria, PEM is rarely assessed in rheumatology or pain-clinic intake. Until such screening becomes routine, physicians will remain unaware of this distinction, and these patients will remain neglected. We urge future reviews of "chronic widespread pain" to incorporate a differential-diagnosis pathway for PEM and post-infectious onset.

References

Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington, DC: National Academies Press, 2015.
Ely EW, Brown LM, Fineberg HV, et al. Long Covid defined. N Engl J Med 2024;391:1746-53.
Komaroff AL, Lipkin WI. ME/CFS and long COVID share similar symptoms and biological abnormalities: road map to the literature. Front Med (Lausanne) 2023;10:1187163.

[Fowler Health @Fowler_Fitness1]

AHCC is one of the only supplements I've come across that compares to thymalin for immunocorrection within the context of allergies, food sensitivities and suppressing autoimmune flairs. I’ve had a few clients who swear its kept them in remission. This was a very common occurrence with thymalin in many of my clients and Patreon community as well. Then, it got pulled from the market. So we had to something comparable.

Unfortunately, you can't get pharma grade thymalin anymore. But you can take the oral thymus bio-regulators and AHCC. AHCC is almost like Japans version of thymalin with nearly three decades of good human data

The mechanisms are different but the outcomes appear similar. Really strong data for infections. Especially clearing HPV. Some good Lyme and EBV anecdotes as well. Really impressive data as a cancer adjunct as well (high doses are required), with a subset of terminal patients experiencing remission in one retrospective case study

[Michael Moran | APC Injury @internetuserf12]

MYPPlus is a Chinese herbal formula studied for to treat brain fog and fatigue in Long Covid and ME by tonifying Qi and resolving Blood Stasis and inflammation. It is three herbs: Huang Qi(Astragalus), Dan Shen(Salvia), and Chen Xiang(Aloeswood). Suggested dosages:

Huang Qi 9g
Dan Shen 9g
Chen Xiang 2g

https://t.co/6MFBQNEoc8

[Jack | amatica health @JackHadfield14]

This is why we defaulted to the method we have. We applied for a joint grant application with 2 other major ME/CFS & Long COVID researchers. Proposed a study that would have been extremely in depth into muscle pathology, and it was rejected.

We later found out that roughly 100-200 people were applying for the same single grant. 50-70 teams of 2-4 researchers per group.

It is just far too restraining to do research via grants in this field. You have to tailor all your propositions to what the specific institute or foundation prefer as well, so it’s no minor task.

[Sarah Schafer MD MPH @SarahSchaferMD]

👏👏Sjogren's has a similar prevalence to RA. Due to lack of clinician training and wide range of presentions, most are undiagnosed. Patients usu seek dx for systemic symptoms (not sicca), such as extreme fatigue, neuro, joint pain, cognitive probs. https://t.co/HDqH8CNFDM

[Star💫 @Starseeker1986]

14 year old Hayden has been bedbound for 2 years since contracting #Covid

His mum describes and compares his neurological symptoms as being similar to vascular dementia 💔🥲

Absolutely devastating that children are being harmed by an airborne virus which could be prevented!

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

The brain is a major player in #MECFS, #Dysautonomia and #LongCOVID, and the etiology is neuroimmune - not voluntary effort-related. In my vast clinical experience, most patients make herculean effort at living the best life they can in a broken body.
https://t.co/fEkNHAQvKv

[ME_CFS_patient @arami1997]

@surf4children *Professore Vincenzo Stanghellini

[ME_CFS_patient @arami1997]

@surf4children Qui in Italia gran parte dei pazienti ai rivolgono al Dott. Stanghellini per confermare o no la diagnosi di gastroparesi, è tra i maggiori referenti