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

\--- \#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"

\--- \#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.

<img alt="" src="https://bjoern-tantau.de/wp-content/uploads/2024/04/IMG_20240416_103137-768x1024.jpg" height="1024" width="768" />

@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/anarchism@lemmy.ml/t/955050

> We're in the middle of a plague > > [Click to listen to the article, and support the Canary] > > The NHS killed Sophia Mirza on 15 November 2005. Sophia lived with myalgic encephalomyelitis (ME/CFS). In July 2003, psychiatrists got cops to smash the door into Sophia’s home down and forcibly take her to a secure psychiatric unit, where she was imprisoned against her wishes for two weeks before a tribunal ordered her release. This ultimately led to her death. > > In January 2024, Olivia Jane Mott travelled from the UK to Dignitas in Switzerland to end her own life. She lived with ME. On 27 March 2024, Lucy Mayhew died. She lived with ME. > > Right now, Millie McAinsh is dying in an NHS hospital because doctors don’t believe her illness is real. They previously sectioned her under the Mental Health Act, enforced Deprivation of Liberty Safeguarding (DoLS) measures on her, and are forcing her to have treatment she doesn’t want. Millie lives with ME. So does Karen Gordon – in an almost identical situation to Millie. > > So, nearly 20 years after the NHS killed Sophia, people living with ME are still dying while the state either lets them or actively brings it about. The obvious question is why? Well, the Canary has extensively documented the answer to that. > > However, the less obvious but perhaps more necessary question is why are we allowing this to happen? > > ME/CFS: inaction, inaction, inaction > > The answer to that is a complex melting pot of issues, including (but not limited to): > > * ME/CFS is still poorly misunderstood – or rather, made out by the medical profession, the state, and media to be. > > * The ME community exists in the most part of people online who are a) clued-up on the issues, and b) have a diagnosis in the first place. Read this about fibromyalgia and ME diagnoses. > > * People have their own political views which play into how they respond to situations of injustice, abuse, and discrimination. We’re a mixed bag of left, right, and no wing. > > * The full force of the media and state has been consistently putting its boot on the neck of the ME community. > > * Charities and Disabled People’s Organisations (DPOs) within the community tend to work to their own agendas – not collectively. > But one of the most pressing one is the community’s inability, and in some cases unwillingness, to protest. > > Where are the protests? Where are the occupations? > > Campaigning, protesting, and taking direct action have throughout history been the way ordinary people have brought about change. Be under no illusions: it is NOT politicians, charities, or the state who do – and even when they have, it’s because people like you and me have forced them to. > > However, this has always been the circle that (until this point) cannot be squared: severely chronically ill and disabled people cannot easily protest. They’re bodies often won’t let them. So, they need allies and advocates to do it for them. > > Yet where are the protests from non-chronically ill allies? > > I seem to recall some shoes being placed outside the Department of Health and the BBC a few years ago (I’m being wry – I was there). Otherwise, the ME community doesn’t protest – unlike nearly every other marginalised group in the UK. > > For example, me and my partner Nicola were literally blocking one of the main arterial roads into Westminster with other disabled people a few weeks ago. It was over benefit-related deaths. Cops kettled disabled wheelchair users and threatened people with arrest. > > Yet that pales in comparison to the tens of thousands of people who have died under the Department for Work and Pensions (DWP) regime; one the UN said caused “grave” and “systematic” violations of chronically ill and disabled people’s human rights. > > ME/CFS: we literally have nothing to lose > > So, why has the ME community not embraced direct action and protest as part of its strategy? > > I can’t safely answer that. That’s for all of us to reflect on. I think there’s elements of class within this. Many marginalised communities are also socioeconomically marginalised by the state. That is, they’re poor in every sense. Specifically, not only does the state marginalise you for, say, your ethnicity or disability, it also marginalises you economically. > > As American writer and civil rights activist James Baldwin summed up: > > > > > > > The most dangerous creation of any society is the man who has nothing to lose. > > > > > > Black people, disabled people, refugees, non-working people all have the least to lose – therefore, civil disobedience isn’t as daunting. > > The ME community needs to fully recognise its own marginalisation and take that to its very core. Millie is a case in point for us all: she has little to lose, now – and things can’t get much worse. > > Shut up and sit down > > There’s another element to this lack of protest and direct action. > > Regarding Millie, I keep seeing comments, and am also being told privately by quite well-known figures in the ME community, that: > > > > > > > Things are going on behind the scenes. > > > > > > But: > > > > > > > You shouldn’t really do ‘x, y, z’ as it will make the situation worse for Millie. > > > > > > And: > > > > > > > The ME/CFS charities are working with Millie’s family. > > > > > > If I hear another comment along these lines I’ll scream. > > Whatever the ME charities and those in the self-appointed (which they are, unless people with ME took a vote on it that I missed) upper echelons of the community have been doing since the NHS killed Sophia on 15 November 2005 HAS NOT WORKED. If it had, Millie and Karen would not be in the situation they’re in. > > Olivia would still be alive. > > Lucy would still be alive. > > And Merryn, Maeve, and Kara Jane would still be alive. > > Nothing has worked in 20 years. > > Labour MP Debbie Abrahams once said in parliament regarding the tens of thousands of disabled people that have died on the DWP’s watch: > > > > > > > Does the minister think that it is unacceptable that any government policy should cause their citizens to take their own life or to die? If he does, should there not be a moratorium on this policy until it is got right? Surely one death is one too many. > > > > > > Why has the ME community for decades accepted so many deaths of its own? > > It is past time that the ME community realised that we are perpetually going round in circles, doing the same things over and over again – and that they are not working. > > It is also past time that the ME community stopped allowing certain gatekeepers to govern how it conducts itself and how it responds to the abuse medical professionals and the state inflicts on its members; abuse that is not inflicted on those same gatekeepers. > > And it is past time that the ME community stopped putting its faith in charities who take hundreds of thousands – sometimes millions – of pounds every year in donations and yet demonstrably achieve absolutely nothing with it. > > That is, the ME community and its allies in other chronic illness communities like long Covid need to take matters into their own hands. Enough really is enough this time. > > Get our acts together, or we are as good as dead > > Larry Kramer was the founder of direct action group AIDS Coalition to Unleash Power (ACT UP). Him and his supporters advocated for disruptive civil disobedience in the face of the HIV/AIDS crisis that was sweeping the US in the 1980s. > > ACT UP members repeatedly got arrested for actions like blocking roads. However, Kramer and his group changed the course of HIV/AIDS: how it was viewed by the public, how it was represented by the media, and ultimately how it was treated by medical professionals. > > He once said: > > > > > > > I was trying to make people united and angry. I was known as the angriest man in the world, mainly because I discovered that anger got you further than being nice. And when we started to break through in the media, I was better TV than someone who was nice. > > > > > > The ME community has been “nice” for far too long. It’s not like we’re complaining about potholes, tree-felling, or London’s ULEZ scheme. We’re fighting against the state-run health service literally killing members of our community. Yet, all those three other examples I gave have seen bigger – and often more civilly-disobedient – protests than the ME community has ever engaged in. > > Crucially, though, Kramer famously screamed in the middle of a meeting of AIDS activists who were arguing among themselves and utterly disorganised: > > > > > > > Plague! We are in the middle of a plague! And you behave like this! Plague! 40 million infected people is a plague! Until we get our acts together, all of us, we are as good as dead. > > > > > > So, get their act together they did. > > The ME/CFS community needs it’s own ‘plague’ moment > > The ME community’s “plague” moment should have been Sophia’s killing in 2005. > > But it wasn’t. > > It should have happened at the start of the coronavirus (Covid-19) pandemic. > > But it didn’t. > > It should have been Merryn’s, Maeve’s, Kara Jane’s, and every other person with ME’s deaths because of how the system has treated them. > > But it wasn’t. > > So, I ask you this: is it going to take the NHS killing Millie for the ME community to have its “plague” moment and finally ‘get its act together’? Because that cannot happen. > > Millie’s story – ending with her returning home to safety – must be a watershed moment for all our sakes. It must be a moment where we as a community stare at ourselves in a mirror until our eyes collectively bleed and ask ourselves whether what we are, and have been, doing is right – and if we should continue with it. > > And I can tell you now: the answer to those questions is ‘no’.

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.

Roughly translated, the immune system keeps fighting. They found the proteins persisting in the blood of Long Covid patients. They lead to blood clots and other stuff. Most importantly this can be tested for.

Hopefully this is applicable to CFS/ME as well.

cross-posted from: https://swg-empire.de/post/446692

> New insights from the German exercise physiologist on how to pace with ME/CFS (especially in order to avoid viral reactivation through overexertion) > > Interesting thread from Reddit. > > TLDR for the link: This professor suggests that, as a pacing regimen, you never exert any muscles for longer than 30 seconds at any one time. After any such exertion, you need to have a break of 30 seconds of rest. Otherwise hypoxic damage of the muscles is bound to occur which leads to PEM the next day or day after. When you avoid PEM for a sufficiently long period of time, and exert yourself only in a safe manner, then, according to his experience, you can recover (go into remission). > > TLDR for this post: More findings and recommendations in connection with this method. Plus explaining how overexertion leads to the flu feeling that some experience, through viral reactivation. I have highlighted the relevant section below for you to find in bold, if you want to read about that part in more detail. > > Only recently I found him speaking in German podcast on ME/CFS for which he was interviewed on the subject of pacing with ME/CFS specifically. (For fellow German speakers, here is the link) > > You will make more sense of the below points if you are familiar with his approach of the 30/30 seconds rule already, so you might want to take the time to read up on the original post linked above, in case it's all new for you. > > Ok, so here are some more interesting insights from Dr. Simon that I only happened upon recently in the above mentioned podcast interview, specifically for ME/CFS: > > (All these points reflect what he says in the podcast, but it's not a comprehensive list for the whole interview, because I only jotted down what was either new for me or else reiterated what I thought was worth reiterating again. If I have left something out that seems important, please, German speaking friends, post it below, so that we don't miss anything for the friends who are not German speakers but would also like to know everything that was being said and explained.) > > Here goes: > > - It typically is easier to go into remission and regain impressive function with his 30/30 seconds pacing regimen if you have suffered with ME/CFS for a long time already and have a stable baseline than if you are newly and severely affected by the Long Covid version of ME/CFS that's all fresh. An explanation for this is, that typically new Long Covid patients still have very active auto-antibodies that cause more disruption to the system than it is the case in longtime ME/CFS sufferers. The ME/CFS sufferers' antibodies willl have calmed down over the years already. > > - He tells the story of an ME/CFS patient of his who went into full remission with this 30/30 pacing strategy after having been very ill with ME/CFS for many years. She started with a simple 30 seconds standing up exercise only and slowly slowly slowly (this can not be emphasised enough) worked her way up to now being able to go for runs in 14 km/h and 7 km/h intervals again. 7 km/h is a light jog, according to him. So I would guess that 14 km/h is decent running. (Note: 14 km/h are 8.7 miles per hour and this translates to 6 minutes 54 seconds per 1 mile.) > > - He considers mild to moderate ME/CFS sufferers to generally still be in comparably quite good physical condition as they typically can still do impressive things if need be (of course they will crash if they overexert, but just speaking of strength, they still have an impressive capacity and function considering how ill they are and feel). It is these patients for whom his method can effectively yield very good results, if they learn how to not overexert themselves again. Note: especially dangerous on good days where people tend to overexert themselves. This is detrimental. It doesn't work. According to him, no one ever recovers by exerting themselves over capacity on good days. > > - ME/CFS patients' lives are so difficult because they are stuck in a vicious circle of overexertion all the time. If these patients got the chance to truly pace, then they would not be so sick and they could recover. But the daily overexertion of just basic hygiene and household chores keeps them in a loop that keeps them low functioning. It's a vicious circle. > > - Mental and emotional exertion have the same detrimental effect as physical overexertion. They have to be avoided if one wants to regain their health. Emotional exertion can also happen if exciting positive things happen, like a visit from a friend you have been looking forward to see. Patients will need to find a way to emotionally pace. This is important. > > - Micro circulation issues: The whole problem is that the muscles and tissues don't get sufficient oxygen from the blood (which is perfectly oxygenated) anymore. This is a problem of micro circulation. It happens because some of the important cells for this to work are destroyed by auto-antibodies after an infection. But, and this is the important bit, they can come back. New cells can form again. And the vascular system must learn how to regulate blood flow again. This happens in the 30 seconds break (the "awarding break" where we sense and assess how we feel and where we rest and give the system a chance to learn). Such learning will take weeks, months and sometimes years to come to full fruition. But the body can do it if you give him the breaks and opportunity to adjust very very slowly. > > - Activities where you need to use your hands over your head (like shampooing your own hair) will be extremely exhausting, because the blood needs to flow against gravity even higher up and the body of ME/CFS patients can't tolerate it. The 30 seconds rule doesn't work here. It needs to be less. Like 5 or 10 seconds. Then rest before you continue. > > - When going for a slow and careful walk in accordance with the 30/30 rule, some ME/CFS patients need to sit down for the 30 seconds break while others can stand still or walk very very slowly. For the more severely affected folks, when sitting down they will need to raise their legs and rest their head on their knees to get the beneficial effect from the 30 seconds break. So not everyone will be able to go for walks right away, as a training, even if they can technically walk for 5 minutes. If they need their rests to include sitting or lying down, when there is no opportunity along the way to do so, then walks are not possible yet. Stick to simple standing up training at home. Sit down immediately when you feel unwell. If you can't yet stand up and tolerate it, start with sitting up and lying down again. If you can't tolerate sitting up yet, start your "training" by only raising your arm for a few seconds and then have a break and see how you tolerate it. > > - As far as breaks are concerned: Switching between physical exertion and cognitive exertion unfortunately doesn't work as a break. It's not a real break, but we need real breaks. "Awarding breaks" as explained in the original post. > > - Intense overexertion can lead to viral reactivation. (He says that sports physiology has shown this already 10 years ago) > > Overexertion apparently "lures" back viruses from the tissue into the blood. But not only the virus itself, but also lymphocytes (which react to the virus)! > > He says that this is what immediately leads to the patient feeling ill and feeling as if they had the flu or were about to getting the flu. It's the overexertion that facilitates this. And it's "definitely not good!" (quote as emphasized by Professor Simon). > > Therefore patients who want to recover their health need to avoid such exertion intensity that leads to these immediate flu feelings. It's all about the intensity. (He emphasizes that word.) He says that unfortunately it can also be emotional or cognitive intensity that does this. > > Once the viruses are reactivated then it can take 4 to 8 weeks (without any overexertion or too much physical or emotional intensity) before the situation calms down again. > > This is the time when it can be "dangerous" to fully retreat to your bed and lie down for many weeks, as deconditioning happens on top of it and it makes everthing worse. > > In case this reactivated virus thing happens to you, you should try extremely carefully to stay active in some way, but be extremely careful to not overexert yourself and to dial down on any mental (cognitive) or emotional intensity. (That's why for some patients psychotherapy is extremely helpful when they learn to calm themselves before intense emotions even happen). > > He says that these flu symptoms don't always mean a full viral reactivation in every case. But when these flu feelings and symptoms happen, it points to too much previous exertion intensity. And that that is the intensity that you will need to avoid in future in order to recover. > > His whole approach says to not be afraid of exertion in general, just 100 % avoid overexertion. > > Bear in mind that muscle use of less than 30 seconds generally is safe when it is followed up by a 30 seconds break. And if you are at a stage where you have a steady baseline already that is bigger than these 30 seconds. If you are severe and bed bound than 30 seconds will be too much for you at this stage. You need to start smaller. > > And also with taking stairs, the 30 seconds rule might not apply for you yet, even if it works well in other areas. It's more complicated due to the complex nature of the thigh muscle. You need to be even more careful. Take 3 steps, then rest 30 seconds. Then take the next 3 steps. It will take you longer to get up the stairs, but it generally will not exhaust and destroy you. (Of course this doesn't apply yet to patients who are still bedbound.) > > If as an ME/CFS patient you do happen to overexert, make sure to rest the day after and day after that. Big crashes for ME/CFS patients, in his experience, happen not after one simple overexertion on one day, but after overexertion and then more overexertion on the next day and the day after as well. > > EDIT: Another important message I just remembered, is: that generally, once the vascular function and microcirculation is restored with this pacing strategy, the recovered person will have their full capacity again. That means that a former professional athlete who is bedbound post Covid will not have to start from zero (like an untrained person) after recovering. This shows that it's not a matter of deconditioning. Once the circulation is restored, people can fully use their muscles again and walk 30 kilometres is necessary, without having to train up months to do it. The normal energy will be fully restored. > > EDIT 2: Here is Prof. Simon speaking in English at a conference about this. It is a very technical talk to his colleagues, and unfortunately doesn't contain much info for patients on the 30/30 method. But in case you want to check him out nevertheless: from 46:32 onwards in this Vimeo link: https://vimeo.com/771944349 (thanks to u/Electrical-Fault301 for finding this and letting me know). > > With that... > > For me, my time on the sub ends here. Not because I am already fully recovered, but because the other day I read a seemingly random statement in a comment that said that people who get better from CFS don't keep hanging around on the CFS sub. I have been searching my soul and have now decided to take a leave from the sub and potentially even reddit as a whole, to see where it takes me. I want to go into full remission and I feel like hanging on to the sub and all the excitement (i.e. the intensity) that comes with posting on here (with my controversial views on the health benefits of calming your system with re-education (retraining) of the nervous system) is not allowing me to fully move on and fully pace the way I want to. > > I feel my views on nervous system re-education are totally in line with what Prof. Simon is suggesting with his findings, that emotional pacing is key too, that we need to dial down intensity ourselves, and that the body can learn to regulate itself again, even when you are severely dysfunctional and your vascular system doing its own thing and causing you an insanely high heart rate. But arguing about my views in comments with users who feel like re-educating your nervous system or doing trauma therapy couldn't possibly have any health benefits for "real" or "true" CFS patients, is not going to bring me the calm I need for where I want to be. > > I wish everyone on the sub, no matter if friend or foe (of my views and comments), health and happiness ❤️

@BarqsHasBite@lemmy.world's idea to share treatments that seemed to have worked for us is a good idea.

So – here is my recipe:

1. Acceptance of CFS and commitment to my new live.

2. feeding my mitochondria dayly with Ribose (~ 2 x 5g), Carnitine (2 x 1 g), Magnesium (400 mg), Ubichinole (200 mg) and some B-Vitamine. I'm taking a combination substitute and forgot which one is important for mitochondrial function.

3. supporting my hormones by taking L-Thyroxin 50 μg and Prednisolon 1.25 mg. Probably a pinch of Testosterone would be helpful, too.

4. Fighting POTS with 2.4 mg Bisoprolol and compression stockings, if it's bad.

5. Intensive aerobic training (aka pacing). At my lowest point, I bought a heart rate sensor to start aerobic training as outlined in the r/cfs wiki. I found out that walking in my appartement already triggered heart rates indicative of anaerobic metabolism. I had to slow down quite a bit for my body to become able to start regenerating.

6. Using a script/app to log my activities and remind me of taking breaks.

7. Qi Gong, tuned down to current state. The avarage Youtube video is too much for severe to medium CFS – I reduce repetitions and simplify the forms when I'm down.

8. Yin Yoga (or probably any other form of passive stretching. During Reha they prefered Fascia Training, which is good technique but imho too strenuous for medium to severe CFS).

9. 75 μg Clonidine and 1.75 mg Zopiclone when I'm not able to sleep.

10. 300 – 2 x 600 mg NAC when I'm wired but tired – haven't found my dose yet.

11. For me, Binaural Beats work very well for this wired but tired state as well. I just feel uncomfortable using ear plugs and my tinnitus gets louder as well.

12. All sorts of guided relaxation. Youtube is a treasure trove. When I'm down, I can't guide myself to deep relaxation.

13. 5–10 mg Prednisolone and 75 μg L-Thyroxine instead of 50 μg when I'm aware of an imminent crash for 3 days.

After 9 month, I was able to start 2 h/4 days work again, and after 8 more months (and several crashes) I was back to full time and ~ 60 % work load. After 3 month full time/60 % work load I know that I will not be able to work with a full work load any time soon (nor presumably ever again).

Hey guys. I didn't have CFS (at least not officially) but I have had issues like this and wanted to share my solutions.

#The big solutions

Creatine. Take it. It's a molecule that plays a role in the ATP energy cycle, which is obviously important here.

*Edited to include:

*Multivitamin. It seems trite to say it, but if you're deficient in something it could really throw a wrench into things. It can be hard to get everything or good quantities from food. It's hard to say what helped exactly, but iodine caught my eye. It's very easy to not have in your diet. The main sources are milk and seafood. If you don't drink milk (many people are lactose intolerant), and if you don't eat seafood most days (not sure who does) then you might want to consider that. A multi has 100% RDA, very easy and you get all the other things covered too.

*Magnesium. There's plenty of headlines about how x% of people are deficient. Apparently you need magnesium to do whatever with Vitamin D. So if you're magnesium deficient you could take all the Vit D, but your body won't be able to utilize it.

#The other big ones.

Liver. Eat it. Chicken liver primarily (beef liver is very high in copper and personally I wouldn't eat it weekly for years on end). Here's my recipe: Soak in a lemon juice and water bath for 24 hours, stir once halfway. Drain and dry. Cook with salt, pepper, ground thyme. Cooking it in bacon fat seems to work well, cook two strips of bacon and use the fat left in the pan. Coconut oil works well too . Many of the vitamins are water soluble so I have a bit every second day instead of a big weekly meal. You drop the lemon juice after a while when your taste buds adapt.

Eggs. Hard boiled, I eat 1-2 a day.

#Around the edge solutions:

Bone broth. I think it helps heal the gut and digestive track.

Fish oil.

Remember you have to consider that different things will help at different times along your path. Item A might be the most important now, but item B may be the most important later.

I've started watching Buffy the Vampire Slayer again and 30 minutes in, in the first episode, Cordelia is telling some friends about her bedridden mom whom she suspects to suffer from CFS, whereas her doctor suspects the Epstein-Barr virus.

It's been decades since I've seen the show, but it will probably turn out later to be some kind of demonic influence. If only it were that simple.

Functional Neurological Disorder aka Dissociative neurological symptom disorder aka Conversion Disorder?

The latter has the following diagnostic criteria in DSM V:

1. One or more symptoms of altered voluntary motor or sensory function.
2. Clinical findings can provide evidence of incompatibility between the symptom and recognized neurological or medical conditions.
3. Another medical or mental disorder does not better explain the symptom or deficit.
4. The symptom or deficit results in clinically significant distress or impairment in social, occupational, or other vital areas of functioning or warrants medical evaluation.

https://en.wikipedia.org/wiki/Functional_neurologic_disorder?wprov=sfti1

We don’t seem to have a Lemmy community for any of these yet? True? Maybe we need to get together on ‘Diagnoses of exclusion’?

A university in Hannover, Germany is planning a study on the effects of apharesis on Long Covid patients with fatigue.

A first study in Mülheim showed an effectiveness of 70 % if I recall correctly. But they didn't have a control group. This new study will be scientifically accurate.

>We report that overexpression of Wiskott-Aldrich Syndrome Protein Family Member 3 (WASF3), here identified in a 38-y-old woman suffering from long-standing fatigue and exercise intolerance, can disrupt mitochondrial respiratory supercomplex formation and is associated with endoplasmic reticulum (ER) stress. Increased expression of WASF3 in transgenic mice markedly decreased their treadmill running capacity with concomitantly impaired respiratory supercomplex assembly and reduced complex IV levels in skeletal muscle mitochondria. WASF3 induction by ER stress using endotoxin, well known to be associated with fatigue in humans, also decreased skeletal muscle complex IV levels in mice, while decreasing WASF3 levels by pharmacologic inhibition of ER stress improved mitochondrial function in the cells of the patient with chronic fatigue.

I wonder if this is also relevant for general ME/CFS. Sounds logical to me.