Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

This community's instance feddit.de is dying. I suggest everyone who hasn't done so already to subscribe to !chronicillness@lemmy.world.

POV: I show up to the appointment -- millenial dr frankenstein dissapointly mumbles "it's alive, k, nvm"

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#chronicillness #autoimmune #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs

@cfs@feddit.de

POV: I show up to the appointment -- millenial dr frankenstein dissapointly mumbles "it's alive, k, nvm"

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#chronicillness #autoimmune #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs

@cfs@feddit.de @ChronicIllnessHumor@mastodon.social

They treated 16 patients with cholesterin and blood pressure medication and it showed a reduction of about 90 % in symptoms.

Here's an article in German about the study: https://www.hessenschau.de/gesellschaft/interview-marburger-post-covid-studie-zeigt-erstaunliche-erfolge-v1,cholesterin-long-covid-100.html

Can anyone gleen how bad the patients had it before treatment? I can't get further than the abstract in the full paper.

cross-posted from: https://kbin.social/m/mecfs/t/979041

Announcement from Jarred Younger: 012 - Good News from the FDA - Time to Start Scanning!

We have been given the green light for our new scan tracking leukocyte infiltration of the brain. We can now run the first-ever patient! I wanted to share the exciting news - Jarred Younger.

Jarred Younger's research uses new techniques to study the brain inflammation present in MECFS. If he finds leucocytes in the brains of pwMECFS that would mean they had crossed the brain blood barrier.

Warte jetzt darauf, dass die Voruntersuchungen und das Vorgespräch zur Studie EXTINCT Long COVID. Mit etwas Glück bekomme ich eine ~~HELP Apharese~~ Immunadsorption (Blutwäsche).

Edit: Hab was verwechselt, die machen keine HELP Apharese sondern Immunadsorption.

@cfs@feddit.de

https://bjoern-tantau.de/archive/1018

#longcovid #mecfs

cross-posted from: https://lemmy.world/post/14342827

They really want people to RTO

Source- but beware, the site is cancer.

cross-posted from: https://kbin.social/m/mecfs/t/898486

Health outcomes for Long COVID are comparable with ME/CFS

People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

cross-posted from: https://feddit.de/post/10021761

Long Covid Awareness Day: Wir sind alle vulnerabel. Am 15. März ist Internationaler Long Covid Awareness Day. Millionen Betroffene warten auf Therapien. Wie steht es um sie?

"Wie protestieren, wenn man zu krank ist, um das Haus zu verlassen? Ein guter Teil des #LongCovidAwarenessDay findet in Social Media statt: Betroffene sind aufgerufen, Fotos von sich selbst vor und nach der Infektion zu posten. In Berlin hängt eine Initiative vor dem Bundestag 500 Bilder von Erkrankten und ihre Arbeitskleidung an Wäscheleinen auf. So will sie darauf hinweisen, dass die Krankheit nicht nur für die Betroffenen schlimm ist, sondern auch ein enormer volkswirtschaftlicher Schaden entsteht.

(...) Insgesamt wird die Versorgung von den Betroffenen aber als desaströs empfunden. Ihre aufwändigen Fälle treffen auf ein ausgebranntes Gesundheitssystem. Manchen helfen manche Therapieversuche, manchen hilft Zeit, manchen hilft noch nichts. Warum das so ist, ist noch nicht gut erforscht. Auch warum es manche Leute trifft, und andere nicht, ist nicht bekannt. Grundsätzlich sind alle vulnerabel."

Artikel von @read_and_riot@chaos.social : https://chaos.social/@read_and_riot/112100101199172917

cross-posted from: https://kbin.social/m/mecfs/t/891917

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot

The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviour...

Three Long Covid cases could be healed with corona antibodies.

Only three cases and it's explicitly Long Covid. But maybe further studies can get insights into general ME/CFS.

Only back then it was absurdist humour.

cross-posted from: https://lemmy.world/post/12465570

Clues to a better understanding of chronic fatigue syndrome emerge from a major study

Long before the world had heard of long COVID, Sanna Stella experienced firsthand how a simple respiratory infection can shape-shift into a chronic illness.

In 2014, a case of bronchitis left Stella, a therapist who lives in the Chicago area, with debilitating fatigue.

Within a month, she was barely able to walk from the couch to her kitchen table. Eventually, Stella learned she had chronic fatigue syndrome, now called myalgic encephalomyelitis/chronic fatigue syndrome, or simply ME/CFS.

Patients can suffer from a range of symptoms, including profound exhaustion, brain fog and post-exertional malaise, an escalation in symptoms following exertion. There is no FDA-approved treatment for the illness, which affects more than 4 million people in the U.S.

cross-posted from: https://kbin.social/m/mecfs/t/856180

Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome (deep phenotyping study)

The new work, published this week in Nature Communications, affirms that ME/CFS is unquestionably biologically rooted, says Avindra Nath, clinical director of the U.S. National Institute of Neurological Disorders and Stroke, who led the study. It revealed brain activity differences, along with immune and other abnormalities, in 17 people with ME/CFS compared with 21 healthy controls.

cross-posted from: https://lemmy.world/post/12271958

Long Covid ‘brain fog’ may be due to leaky blood-brain barrier, study finds

If barrier controlling substances entering and exiting brain is off balance, it can drive changes in neural function

From forgetfulness to difficulties concentrating, many people who have long Covid experience “brain fog”. Now researchers say the symptom could be down to the blood-brain barrier becoming leaky.

The barrier controls which substances or materials enter and exit the brain. “It’s all about regulating a balance of material in blood compared to brain,” said Prof Matthew Campbell, co-author of the research at Trinity College Dublin.

“If that is off balance then it can drive changes in neural function and if this happens in brain regions that allow for memory consolidation/storage then it can wreak havoc.”

Writing in the journal Nature Neuroscience, Campbell and colleagues report how they analysed serum and plasma samples from 76 patients who were hospitalised with Covid in March or April 2020, as well 25 people before the pandemic.

cross-posted from: https://kbin.social/m/mecfs/t/844768

Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Rohrhofer et al 2024 (full text)

Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by profound fatigue, post-exertional malaise (PEM), and neurocognitive dysfunction. Immune dysregulation and gastrointestinal symptoms are commonly observed in ME/CFS patients. Despite affecting approximately 0.89% of the general population, the underlying pathophysiological mechanisms remain poorly understood. This study aimed to elucidate the relationship between immunological characteristics and intestinal barrier function in ME/CFS patients. ME/CFS patients were stratified into two groups based on their immune competence. After documentation of detailed medical records, serum and plasma samples were collected for the assessment of inflammatory immune mediators and biomarkers for intestinal barrier integrity by ELISA. We found reduced complement protein C4a levels in immunodeficient ME/CFS patients suggesting a subgroup-specific innate immune dysregulation. ME/CFS patients without immunodeficiencies exhibit a mucosal barrier leakage, as indicated by elevated levels of Lipopolysaccharide-binding protein (LBP). Stratifying ME/CFS patients based on immune competence enabled the distinction of two subgroups with different pathophysiological patterns. The study highlights the importance of emphasizing precise patient stratification in ME/CFS, particularly in the context of defining suitable treatment strategies. Given the substantial health and socioeconomic burden associated with ME/CFS, urgent attention and research efforts are needed to define causative treatment approaches.

A while ago I moved in with my parents to relieve my wife from having to juggle two kids, the household, her elderly parents, her work and me. And my parents have this fancy digital thermostat I can control from my smartphone.

At the start I had it set to 17° C. But by now I have it at 15° to feel comfortable. Granted, I lay under a blanket most of the time. But higher temperatures also feel bad on exposed parts of my body.

Kind of feels like my body is slowly shutting down. It's a little bit unsettling. No idea what I will do in the summer. We only have a radiator and no AC.

cross-posted from: https://kbin.social/m/mecfs/t/827670

ME Research UK and the ME Association announce funding for a study that aims to create a diagnostic test for ME/CFS

In 2019, Professor Ron Davis from America reported that researchers had developed a nanoelectronics test that could detect an impedance in white blood cells taken from people with ME/CFS1.

They felt their findings could represent a diagnostic marker, but since then there hasn’t been any further research in this area. ME Research UK and the ME Association have jointly funded a new 12-month study that will build upon these initial findings.

The research grant has been awarded to Professor Robert Dorey, Dr Fatima Labeed and Professor Michael Hughes from the Centre for Biomedical Engineering at the University of Surrey, and Dr Eliana Lacerda and Caroline Kingdon from the London School of Hygiene and Tropical Medicine and the UK ME/CFS Biobank.

The UK researchers have already used a more robust approach to identify statistically significant differences between the electrical properties in blood from people with ME/CFS compared to healthy and multiple sclerosis (MS) controls (using samples from the UK ME/CFS Biobank).

Their preliminary work suggests that the 2019 results from America are repeatable and can be explored in more detail. Furthermore, that they have the potential to be used as a routine diagnostic test.

(More in link)

Has anyone here tried antivirals?

Yesterday was a strange day. Until noon I was well as usual – 90 % on my new, cfs adapted wellbeing rating (would have been 45 % pre-cfs...). So, great day! Then I started to decline. fled work at 14:45. Was barely able to reach home. rested. watched a movie with the very discerning feeling I might overexert me by watching. Went to bed at 20:00, sleeping well using my night medication, waking after 9 h, feeling ok-ish, resting a bit more, wondering what caused this crash – well, it didn't really feel like a crash, should feel worse the next day if it was a crash. Strange. Getting up. Preparing coffee. deciding to apply my crash medication. So – 10 mg prednisolon in Wednesday medication. 5 in Thursday's – wait. Yesterday was Wednesday, wasn't it' I'm pretty sure about that. So why is Wednesday still full?

TL;DR

forgot to take medication yesterday, experienced it's worth anew.

I'm too brain fogged to really understand it, but it seems like the ME/CFS research is also having good results.

So the biggest thing I had to figured out was all my allegeries. Fragrance is the biggest one, its in everything and I can't be around it at all. It took 6 months to get rid of all of it and is a constant effort to keep out of my living space. I have met multiple other people who has this same allergy. Cutting gluten out of my diet also helped a lot. HEPA 13 air purifiers are a must. And these are the meds I'm currently on: Gabapentin 300mgx3 daily ALA 300mgx3 daily Tumeric 500mgx3 daily Benadryl liquid gels 25mgx3 daily Loratadine 10mgx1 daily Azelastine HCI 205.5 mcg spray 4 times daily Probotics 1x daily Bio-identical hormones to correct hormone imbalance I smoke tar free cigarettes for brain fog and nausea Microdose of psilocybin 400mg of fungal material 4 times a week for migraines and brain fog. Let me know if you have any questions. I know how awful it feels to have this with no end in sight.