Biomedics MECFS

MECFS Biochemistry Research, Clinical Interface, Education, Patient Advocacy.

[Biomedics MECFS @BiomedicsMECFS]

@ENERGY No. Completely untruthful.
Gas prices *lower* during Biden.

The trick is to keep prices low.

Appears to be a pattern —
you don’t know how to research things?

[Biomedics MECFS @BiomedicsMECFS]

@realDonaldTrump Cruel. Mean. Abusive. Un-Christian.

[Biomedics MECFS @BiomedicsMECFS]

@realDonaldTrump .
2022 Trump golf video.

Springsteen tripped on steps.
He gives three-hour concerts

[Biomedics MECFS @BiomedicsMECFS]

We respond using professional medical language:

This is horse manure.

DEFCON1 Gaslighting:

"Recovery [from #MECFS] is often possible if patients #pwME are helped to adopt a less threatening understanding of their symptoms."

@OpenMedF @PlzSolveCFS @MEActNet @MEAssociation

[Dr Sanil Rege FRANZCP | MRCPsych @sanilrege]

I remember when this study got a lot of hate as well 👉 “Chronic fatigue syndromes: real illnesses that people can recover from.”

The last sentence from below is particularly poignant. 👇

“Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process.

Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains.

We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided.

We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation.

Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities.

Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.”

Paper - https://t.co/Gg97o1K6ud

[Maria Lorraine @MariaLorraine_]

@GeoBioEthics @KPDOR @kpnorcal @PLOSONE @CADMHC @GavinNewsom @CMSGov @NIH_NINDS @MEActNet @BatemanHorne @OpenMedF @PutrinoLab @MariaAnsariMD @Cal_HHS At this rate, Kaiser's next newsflash will be smoking causes lung cancer.

Doesn't KP research follow medical science? Apparently not.

Medicine has known for years #LongCovid causes ME/CFS.

You "forgot" to count 1000s of pts who @permanentedocs refused to diagnose with #MECFS.

[Biomedics MECFS @BiomedicsMECFS]

@chydorina @Nebulow Mast cells at high alert react to many benign substances they perceive as invaders, like fillers in medications.

Problem is not the mast cells, but untreated condition(s) that mast cells are alerting the body to.

Also: many broken metabolic pathways,
not necessarily CYP genes.

[Biomedics MECFS @BiomedicsMECFS]

.
FUNCAP is a horrible name for a good questionnaire for patients with #LongCOVID + #MECFS, illnesses that are profoundly disabling and debilitating.

No one ever thought an old medical abbreviation with FUN might be inappropriate for pts who suffer in misery for decades?
So FUN.

[Biomedics MECFS @BiomedicsMECFS]

Unbelievable.
Stanford Medical's Dr. Anna Lembke on
Chronic Pain:
"This probably a spiritual problem. We can't help your pain. Don't go see a doctor."

@StanfordMed @MedBoardOfCA @DMHC @CMSGov @OpenMedF @dysclinic @NYTHealth

#MECFS #POTS #ehlers #MCAS
https://t.co/0y6xAqNoey

[Biomedics MECFS @BiomedicsMECFS]

@MariaLorraine_ @EricTopol @NatureMedicine .
#LongCovid + #MECFS are neuro-metabolic disorders like Alzheimer's, in addition to being chronic infections.
The glymphatic system that purges amyloids doesn't work well in them either, a result of the brain's low energy bc of virus and immune system damage to mitochondria.

[Dana Ludwig @danaludwig]

Oops! Cat is out of the bag. Most of us have complained that Covid isolation of 24 hours is too short. Now someone actually collected data. The MEDIAN time for Covid recovery is 20 DAYS! MEDIAN excludes all the LC cases (worst 22.3%). 50%, not 95% recovered in 20 days.

[Biomedics MECFS @BiomedicsMECFS]

@LaramccabeLara @FranceyME Antivirals: best #MECFS option.
Test accurately PCR DNA quantified.
Treat causal viruses EBV, HHV6, etc
& reactivating enteroviruses, min 2 yrs
Monitor titers. Dx Small Fiber Neuropathy
probable origin of POTS.
Poor O2 extraction->supplement
R/o neurostructural issues, Lyme, myco

[Biomedics MECFS @BiomedicsMECFS]

.
Elizabeth Unger of @CDC actually stated inaccurate data from a poorly designed 2021-2022 study reflects CURRENT prevalence of #MECFS in 2024.

@POTUS @SecBecerra, plz get a new head of ME/CFS + #LongCOVID for @CDCgov.

These ilnesses too impt for Unger.

#MeLcFladLisbon

[Biomedics MECFS @BiomedicsMECFS]

@jenbrea It's always good to see Jen Brea @jenbrea.

[Biomedics MECFS @BiomedicsMECFS]

@MEresearchzone That's because they tested the slow-response thyroid system (HPA), rather than the rapid-response thyroid system from the cells and tissues, which reveals cellular thyroid dysfunction, especially the isozymic conversion of T4 to T3 at the cellular level.

[Billy Hanlon @bhanlon15]

10/11/23: "PhD, Dr. Eirini Apostolou: SARS-CoV-2 induces differential reactivation of latent viruses in ME/CFS"

'Recorded at the Swedish ME Association (RME) 2023 conference at the Stockholm County Council'

https://t.co/3dY7HFKWkh

[PwME 4 bioMEdical research @ValeBodi]

Defective energy MEtabolism in #MECFS a webinar by Prof. ⁦@kjtronstad⁩ 2022 Swedish ME association conference https://t.co/JCD6WBax1N

[Biomedics MECFS @BiomedicsMECFS]

.
Physicians have to treat the illness.
not just the symptoms.

[🕸️Dr.T, PhD @chydorina]

Nothing will 'cure' #MECFS or #LongCovid. It is not the right goal. Instead, focus on optimizing your health "in sickness and in health".

Supplements can REALLY help with symptoms and managing dysfunction and keeping you as healthy as you can be long-term - which really is the goal.

I think this is a really important point.

Increasing quality of life (lower symptom burden) and staying as healthy as possible even while sick with a chronic disease is the goal of supplement use in chronic illness.

Optimize your health "in sickness and in health".

I want to be as healthy as possible when a cure comes down the pipeline and everything I do is directed to that goal. I have had major gains in functions over the last decade (a few times). What I take (and recommend now) looks nothing like what I took for the first few years.

Dose, form (transdermal), brand, quality, single ingredients, stacks, co-factors - over and above the actual molecule there is a host of things to consider to get optimal efficacy.

Every day I see people discussing taking supplements at too low of a dose to ever work (dose-response is a thing). Just as successful cancer therapy requires many drugs and a process (including changing the drugs over time) using supplements optimally requires stacks and protocols.

When people say "supplements dont work" - it really irks me. It is just not accurate. They do work - but what are you using them to do? They will not cure you. Google scholar search the supplement you are 'doubting' works - the evidence for most supplements is actually beyond impressive in terms of biological theory. They are doing a LOT.

If anything over the last decade of being sick I have improved, stabilized, had baseline increases from where I was a decade ago (even with the blips of a new mold issue which set me back) and I attribute this to my supplement protocols and interventions.

When I get bummed out I ask myself 'where would I be if I had NOT been doing all this stuff?". The answer scares the shit out of me.

I do believe that we will get a cure/treatment within the next decade and probably far sooner now that AI and large biological models have hit the scene.

I will be poised to take advantage of this by optimizing what I can.

[Biomedics MECFS @BiomedicsMECFS]

@pamelarbishop @G_A_grandsong Perhaps the reason newer long-haulers do better is medical and not attitudinal: They're far less sick. Their innate immune systems have not yet been rewired, causing crushing fatigue when that happens, and #LongCOVID has not yet caused a dozen disorders in multiple body systems.

[Biomedics MECFS @BiomedicsMECFS]

@G_A_grandsong @pamelarbishop I look at #LongCOVID treatment differently.

Physicians have to go upstream to the cause(s)
and treat that/them aggressively to prevent a dozen of downstream illnesses in multiple body systems from appearing. This illness has a Identifiable progression.

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

Replace #LongCovid with ___ MS, rheumatoid arthritis, diabetes and any other life-altering chronic illness and see if you can treat those with sunlight, hearty breakfast and hydrotherapy. 🙄

For consensus guidance on treatment of #LongCovid, read here:
https://t.co/UAxxhacT7B