Discover and read the best of Twitter Threads about #BrainFog

Most recents (24)

A few people have asked for a single thread on my journey through #HBOT (Hyper baric oxygen therapy) for #LongCovid So here goes. Before I started I was in bad shape. Mostly bed bound. Profound tinnitus, PEM - 300 m was the absolute limit. A trip to the shops was tough going.
I had coat hanger pain all the time. Neck and shoulders. Tremor in my hands, legs and jaw. Profound brainfog I couldn't read, had memory problems and couldn't complete any complex tasks. My mood was incredibly low. Hopelessness , despair and anger. I had sleeplessness
And nightmares every night. I woke feeling exhausted never felt refreshed or comfortable in the bed. Crushing fatigue everyday I never felt energised and had basically become a recluse. What energy I had I used to sift through twitter and medical journals to find anything that
Read 16 tweets
A funny thing is happening as I regain parts of my life as a result of receiving #HBOT after a 14 month battle with #LongCovid. While I'm incredibly grateful to be one of the lucky ones who found a treatment they respond to I'm also trying to come to terms with the possibility
That some of the damage maybe permanent. For example the other day I was taking the boat out after a spin up the river, there is a winch on the stern that keeps the boat on the trailer. I couldn't figure out how it works. I've been using those winches for years. Literally like
Second nature to me. It operates in such a way as you have to have several things lined up so it will tighten properly. Not matter what I did I could not put the pieces together. #Brainfog means I am unable to do tasks which require multiple areas of focus.
Read 8 tweets
In order for ketogenic diets to be offered as a treatment for Alzheimer's disease and covered by insurance, several things would need to happen. (1/11)
First, large-scale clinical trials would need to be conducted to demonstrate the safety and efficacy of ketogenic diets for Alzheimer's disease. (2/11)
These trials would need to include diverse patient populations and be well-designed to control for confounding variables. (3/11)
Read 11 tweets
Neue Hypothese zu #LongCovid: Eine entzündliche Säure-Basen-Störung im Körper.

Anbei ein Thread 🧵
1 / x
👇 Image
Der Mechanismus von #LongCovid (Post-Acute Sequelae of COVID-19; PASC) ist derzeit unbekannt, und es gibt keine validierten Diagnosen oder Medikamente. SARS-CoV-2 kann zu verbreiteten Infektionen führen, die Gewebeschäden in mehreren Systemen, dysregulierte Entzündungen und …
… Störungen des Zellstoffwechsels zur Folge haben. Die Gewebeschäden und Entzündungen beeinträchtigen nachweislich die mikrovaskuläre Durchblutung, was zu einer Hypoxie [Sauerstoff-Unterversorgung] führt, die in Verbindung mit der durch das Virus verursachten …
Read 58 tweets
Jetzt kann ich wieder etwas denken. Liebe Frau Prof. @C_Scheibenbogen, vielen Dank für den rettenden und schützenden und auch richtigen Einwand gestern beim digitalen Fachgespräch, dass viele #MECFS Betroffene gar keine so anstrengende Reha schaffen würden, dass sie schaden 1/x
Könnte. Vielen Dank auch für Ihre Zeit, Ihren unermüdlichen Einsatz, Ihren Kampfgeist und Ihre Hoffnung bringenden Worte. Lieber Sebastian Musch, @dg_mecfs, vielen Dank für den so wichtigen Hinweis, dass #MECFS bereits vor Corona bestand, und dass nicht passieren darf, dass 2/x
MECFS Patienten vor einem zukünftigen Kompetenz Zentrum stehen / liegen und nicht eingelassen werden, weil sie keine #LongCovid Diagnose haben sondern MECFS aufgrund anderer Ursachen. Das trifft genau meine Befürchtung. Ich habe MECFS durch eine #Fluorchinolon Vergiftung und 3/x
Read 14 tweets
Sharing out some results from our ai-powered #LongCovid site:
* Most popular
* Most effective overall
* Most effective for POTS, Fatigue, Brain Fog, and more

These results are *directional*, but in the spirit of empowering patients with more information, we wanted to share.

1/ Sources
* Twitter
* Reddit: 2 LC subs, plus r/cfs, r/pots, r/mcas, r/eds, and r/dysautonomia

We collected >35k treatment reports, and read them w/ an AI model to (imperfectly) see if people improved/worsened.

We show all raw data and inferences in case you want to vet!
2/ Top 20 most popular

This helps us gut check the data. Indeed, we see some familiar faces - antihistamines, nattokinase, LDN, probiotics, etc.

The beta blocker reports are mostly coming from r/pots, and the steroid reports are largely from r/mcas.
Read 13 tweets
Mr. Maidowski providing recent findings for #SAND (SARS-COV Associated Neurological Decline) AKA #BrainFog as we start to tie findings of HIV-1 viral persistence and SARS viral persistence.
Your nation hasn’t authorized standardized testing of biomarkers for SARS infection beyond the acute phase, therefore the clinical evidence of #LongCovid is only being generated after autopsies results.
At the beginning of the HIV pandemic in the early 1980s; HIV patients were dying 5-10 years after infection. In 1986, Public Health acknowledged the scientific evidence from 1984 that HIV was a cause of immunodeficiency.…
Read 13 tweets
I get really happy when the people in my online program celebrate their results. This is a direct cut and paste of an email I received today, word for word. (1/12) #share #email #testimonial #brainfogrecovery #brainfog #health #experience #hr #software #energy #work
Who are you and what do you do?
"I am a 24-year-old cis woman who currently works at an HR software company." (2/12)
What were the brain fog symptom challenges you were suffering with before you began? "I struggled with concentration, which impacted my ability to focus on my work during the day. (3/12)
Read 12 tweets
When there’s persistent viral infection in the human body, our own immune system dysfunction will destroy healthy tissue - starting with the brain. That’s what we learned about HIV. In year 5 of the HIV pandemic.
In HIV patients this is referred to as #HAND (HIV Associated Neurocognitive Decline)

But for SARS calling #LongCOVID patients as having #BrainFog was always pointing a finger of blame at the victim.
The greatest knowledge we can learn from HIV patients is that #SAND (SARS Associated Neurological Decline) can be prevented!
Read 16 tweets
Some of you with cognitive symptoms #brainfog have genetic differences that mean you cannot produce enough choline. 🧵(1/10)
If you have these genetics, to get enough choline, you would have to eat 8 eggs a day. And while some of you really love eggs and are into that, that won't work for many of us. So why is having these genetic differences a problem? (2/10)
Because choline is a precursor to acetylcholine. This is a major neurotransmitter that helps run the "rest and digest" part of your nervous system. It's used for sleep. (3/10)
Read 10 tweets
There are positive effects of the #ketone body beta hydroxy-butyrate (BHB) on vascular function. Why? Very likely, the following things that we already know BHB does. And quite frankly, there are likely additional mechanisms that haven't even been discovered yet. 🧵(1/10)
BHB lowers high blood sugar, and that reduces the production of reactive oxygen species #ROS and #inflammation mediators. In other words, BHB reduces Oxidative Stress (2/10)
BHB increases endogenous #antioxidant production by upregulating gene expression in those pathways. So yes, #BHB reduces Oxidative Stress from that mechanism as well. (3/10)
Read 10 tweets
Not all theories are conspiracy theories. The unknown exists and mysteries of science exist. Theories exist as a scientific method when scientific evidence and observation limits are reached, to be filled by technological advances in the future. That’s how science goes.
“Leaky gut syndrome is a hypothetical, medically unrecognized condition”

Despite significant advancement of modern medicine and science, our own guts and gut biome largely remain a scientific mystery.…
Physicians who go to medical school are not instructed about Nutritional Science for one very specific reason. Science is about being able to reproduce and repeat the same results - but our gut bacteria and biomes are all unique.…
Read 31 tweets
#Stigmatisierung hat ein neues Level erreicht ⚠️

Es folgen Auszüge aus meinem heutigen Termin beim Neurologen 2.0 🧠

Ein 🎭 in 19 Akten mit dem Titel:

👉🏻 „Wie es dazu kam, dass ich aus der Praxis geworden wurde“ 🤡

Bevor es zum Arztgespräch kam, wurde ich gebeten 5 Seiten gefüllt mit Fragen zu beantworten, die sich auf neuropsychatrische Störungen bezogen - ist legitim, #Brainfog zeigt sich jedoch schnell

Als nächstes wurde ein shellong Test durchgeführt.

Hatte immer noch keine Möglichkeit mitzuteilen, warum ich eigentlich vor Ort war… 60 min waren rum und ich schon am Ende mit der Kraft.

Ich wurde gebeten eine Liste mit Dingen, die ich einnehme mitzubringen. Tat ich und notierte 4 Medis (Antihistaminika & Co.) und NEMs

Read 22 tweets
Bisher habe ich still mitgelesen und jede Menge von der #PostCovid, #LongCovid #MECFS – Community gelernt.
Hier meine bisherige (vielen anderen ähnelnde) Krankheitsgeschichte:
3x geimpft, 2x BionTech 1x Moderna. Corona-Infektion zu Beginn 2022 -->
Sehr milder Verlauf – hauptsächlich Schnupfen. Deswegen wohl auch nicht wirklich geschont. Ich bin 30, war bisher immer fit, keinerlei Vorerkrankungen, fast jeden Tag Sport. Corona-Infektion schien zunächst gut überstanden. -->
4-6 Wochen später dann als erstes Symptom Tachykardien bis HF 200. 2 Krankenhausaufenthalte ohne nennenswerte Befunde. Keine Myokarditis, Kipptischuntersuchung wurde durchgeführt – kein #POTS. -->
Read 17 tweets
🚨In rund einer Stunde ist es soweit:
Im Bundestag beginnt die allererste Plenardebatte zu #MECFS!

📺#MECFSimBundestag wird live übertragen im Parlamentsfernsehen & via youtube.

🧵An dieser Stelle werde ich versuchen, in einem Live-Thread die wichtigsten Aussagen zu sammeln.
Vor rund einem Jahr gab es im Bundestag bereits eine Anhörung zur #SIGNforMECFS-Petition. Diese fand im Petitionsausschuss statt. Die Aufzeichnung hänge ich an diesen Tweet an.
Heute dagegen berät der Bundestag erstmals im Plenum über #MECFS.
Der heute zu beratende #MECFS-Antrag der @cducsubt ist mit einem Überweisungsvorschlag verbunden. Dann würde heute nicht abschließend über den Antrag entschieden.

Wichtig ist dann vor allem, wie sich die MdB zum Thema #MECFS heute inhaltlich positionieren.
Read 37 tweets
Brain Fog comes before the criteria are met for Mild Cognitive Impairment (MCI). What are the symptoms of MCI? You might recognize them as what you are currently dealing with in your own recurrent or chronic brain fog symptoms. #brainfog #mci #mood 🧵(1/14)
You forget things more often.
You miss appointments or social events.
You lose your train of thought. Or you can't follow the plot of a book or movie. #brainfog #mci #mood (2/14)
You have trouble following a conversation.
You find it hard to make decisions, finish a task or follow instructions.
You start to have trouble finding your way around places you know well. (3/14) #brainfog #mci #mood
Read 14 tweets
The effects of a ketogenic diet on immune function is one of the mechanisms by which it improves brain health. A healthy immune system protects the brain and reduces neuroinflammation. Brain immunology is a thing we don't talk about enough. 🧵
"...the present article encompasses several facets of ketogenic diet as an immunomodulator with respect to its expansive clinical applications."
In my Brain Fog Recovery Program, one of the lessons goes into some very basic brain immunology and discusses how chronic illness affects neuroinflammation, which then impairs vagus nerve function and digestion, and microbiome. It's all connected.
Read 4 tweets
Für alle die gerne sagen, aber wieso #Rentenkassen durch #Durchseuchung entlasten wenn doch so viele anschließend #LongCovid und andere chronische Folgeschäden haben, die eigentlich zu #Rente führen müssten. Ich sehe ihr habt euch nicht sehr viel in den letzten Jahren damit 1/3
beschäftigt wie es denn eigentlich den zahlreichen chronisch Kranken die von #Jobcenter abhängig sind und statt in der Erwerbsfähigkeitsrente zu landen, in irgendwelchen Maßnahmen und/oder #WfbM für einen Hungerlohn zum arbeiten gezwungen werden. Oder unter Existenzminimum 2/3
einfach nur noch in einer kleinen Schimmelbude vor sich hin vegetieren müssen. Nicht umsonst wird gerade #LongCovid psychologisiert und Diagnosen wie #MECFS oder zB #Fibromyalgie waren schon immer schwer zu bekommen, die Berentung darauf war schon immer Kampf gegen Windmühlen 3/3
Read 4 tweets
#longcovid: I got sick in March 2020 and two weeks later my immune system failed me. I got very tired, couldnt concentrate anymore and suffered from #fatigue and #brainfog. I have have ekszeme on hands and feet with #itching and #insomnia. …“
- @ADubbelhuis

„Due to #LongCovid and the related health issues I couldn’t work anymore as a sales-excecutive at my new job. I lost my career, gave up most of the social activities, hardly see friends and family anymore and get #fatigue by reading, music and tv. …“
- @ADubbelhuis

„It’s hard to find activities which are realizable with #longcovid. No idea how I can find a new job and live like before. I visited Ergo- & physiotherapist, dermatologist and will need psychological help. We need more understanding,research and treatment.“
- @ADubbelhuis

Read 3 tweets
„Since #Covid I suffer from #headaches, #tiredness, concentration problems, #brainfog, #dizziness, physical problems, loss of taste and smell and sometimes tightness on the chest. I follow physio- & ergotherapy. My husband is also suffering from #longCovid …“
- @IrisdeReus

„In hospital I did several long capacities tests and blood test. These test are standard and only gave results about my bad condition. They don’t solve the long Covid symptoms. After a year being sick I’m still making small steps in the right direction. …“
- @IrisdeReus

„I tried to return to work. I joined a 1 hour meeting with a small group of colleagues at the office, then I driven back home.
I still can’t handle noise or big groups. My life has changed from doing spontaneous things to making plans for each day and pacing.“ - @IrisdeReus

Read 4 tweets
#longcovid. I have had it twice now. Never recovered from first infection. I am no longer able to stand for very long or make meals for my family. I can no longer work as I continuously have #fatigue, #migraines, #nausea, nerve #pain and #brainfog. …“

1/4 Image
„I use to work full time and just started a new job with the IRS after a pause from working as a mail carrier for 12 years. I can no longer do my daily of walks of 3 to 5 miles. Or spend time hiking or kayaking. …“

„I enjoyed baking breads and pies and helping my older sister and aging parents out. I can no longer do that. I am a shell of myself. I have spent thousands of dollars and countless appts trying to figure out what was wrong with me in the beginning. …“

Read 4 tweets
Beste Kamerleden,
Morgen weer debatteren over het covid beleid. Ik hoop dat jullie hierbij ook denken aan alle mensen met #LongCovid. (Geschat in NL nu 600k!) Hier onder daarom nogmaals een aantal van onze verhalen. Laat ons geen colleteral damage zijn! 🧵 Tekst: beste kamerleden laat ons geen collateral damage zijn
#LongCovid heeft een onwijs veel impact op het leven patiënten.

Zie hier bijvoorbeeld Pascal, het verschil van hoe haar leven er 3 jaar geleden uit zag in vergelijking met nu is enorm: /
Ook veel zorgmedewerkers hebben Long Covid.
Je weet wel, die zorgmedewerkers waarvoor we stonden de klappen… nu laten we ze keihard vallen. Ondertussen groeit het tekort in de zorg.
Wat zouden ze graag weer willen werken. /
Read 28 tweets
1/🧵 Micro Clots & Endothelial Dysfunction in Long COVID

Plus new Epidemiology in @JAMA_current some say proves #LongCOVID is a hoax⁉️
Truth is…endothelial dysfunction plus inflammation can lead to life-altering brain & body dz.
Let’s explore data

Pic H/T @VirusesImmunity Image
2/ Remember that Vascular flow problems don’t occur in isolation from inflammation.

This new piece by @Jamie_Ducharme balances the discussion well.
It’s time for great studies & NOT immediate widespread treatment with blood thinners that might harm.
3/ The urgency is that people are living w what amounts to newly acquired #dementia.
This WaPo piece starts w “Haze. Slow. Drunk. Lost.”
Our patients are adamant that descriptors like #fatigue & #brainfog don’t do justice to what makes them suicidal.
Read 22 tweets

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