Koen ME/LC @helldogbe.bsky.social · 20/06/2025My eating greatly improved and I developed a real appetite for all kinds of cuisine. I could now eat steak and veggies and was no longer left at the table every night for an hour until my plate was finished but I could garble it down in minutes... 110
Koen ME/LC @helldogbe.bsky.social · 20/06/2025I had suspected light MECFS as a child and couldn't eat properly until I had a tonsillectomy done. At the time it was never linked to my low energy levels and I was just known as a docile easy child. Hope science cures this disease soon so your son can have a better life. 110
Koen ME/LC @helldogbe.bsky.social · 31/05/2025There's a lot of emotions involved I can imagine. It's terrible to lose your life while you're still starting out. 000
Koen ME/LC @helldogbe.bsky.social · 08/05/2025Don't forget neuroSPECT scans! Mine looks like this - = hypoperfusion, + = hyperperfusion orbi.uliege.be/bitstream/22... 000
Koen ME/LC @helldogbe.bsky.social · 01/05/2025Here's what my SPECT looks like (- = hypoperfusion, + = hyperperfusion)! No help offered but to "live with it". 050
Koen ME/LC @helldogbe.bsky.social · 25/04/2025Toen ik enkele jaren geleden nog beter was had ik met PEM na fysieke inspanning trouwens altijd aften in de mond, dus ik was op m'n hoede voor een verlaagd immuunsysteem. Maar heb daar totaal geen last van gehad. M'n hersenscan toont trouwens wel extreme inflammatie/hypoperfusie aan. 100
Koen ME/LC @helldogbe.bsky.social · 25/04/2025Ik heb het op eigen houtje geprobeerd. Gestart aan 2mg/week, opbouwend tot 5mg/week en dat 3 weken aangehouden zonder enig (neven)effect. Kostprijs is ongeveer 25€/week aan 5mg/week. 200
Koen ME/LC @helldogbe.bsky.social · 23/04/2025From Belgium: @johanvawe.bsky.social Persistent presence of SARS-CoV-2 RNA found in long COVID patients Marc Jamoulle: Vascular encephalopathy demonstrated by brain single-photon emission computed tomography (SPECT-CT scan) in Long Covid patients orbi.uliege.be/bitstream/22...orbi.uliege.be 281
Koen ME/LC @helldogbe.bsky.social · 23/04/2025Link to the articlebjgplife.comSuzanne O’Sullivan’s new book ‘The Age of Diagnosis’ and her curious characterisation of Long Covid as a psychosomatic conditionO'Sullivan and others fail to recognise the likelihood that most Long Covid patients will have already tried psychological and behavioural approaches ... the idea that there might be issues that, if a 000
Koen ME/LC @helldogbe.bsky.social · 23/04/2025Yes, Rob Wüst is also researching those same changes for ME. www.zonmw.nl/en/article/b...zonmw.nlBlog: What changes in skeletal muscles and blood of people with MPatients with ME/CFS experience many problems related to their muscles, such as fatigue and muscle ache. Exertion makes these problems worse (post-exertional ma 120
Koen ME/LC @helldogbe.bsky.social · 17/04/2025PS it measures average blood flow over a longer time (minutes). So I believe it wouldn't hurt to go in with bad PEM. Unfortunately I had to drive myself so I wasn't at my worst, but maybe the driving helped ramp things up. We don't really know how episodic PEM causes these issues. 010
Koen ME/LC @helldogbe.bsky.social · 17/04/2025Yes, it's my first tangible result after lots of damage from graded exercise. Trying to get into postviral care now and hope it will be enough proof to avoid further psychologisation (and attacks on my disability income). Can't CBT or FND actual blood flow problems... Good luck and keep us updated 210
Koen ME/LC @helldogbe.bsky.social · 17/04/2025My PCP was willing to write the order. I just asked for a "brain SPECT" and gave her the PDF I linked and they wrote in the referral that I had severe PEM from covid with cognitive and physical exhaustion and unrestful sleep. As I understand its a cheaper scan than an MRI and I got in within days 110
Koen ME/LC @helldogbe.bsky.social · 17/04/2025How about a SPECT scan? Mine shows clear problems with brain hypo- and hyperperfusion orbi.uliege.be/bitstream/22... 110
Koen ME/LC @helldogbe.bsky.social · 17/04/2025Metformin (XR)? Heb door LC/ME flink last van energie/suikerdips waardoor ik vaak snackte na maaltijden. Dit helpt me echt enorm om de buitensporige eetlust te remmen. Zeker doordat ik amper het huis verlaat slechts nood heb aan zo'n 1200kcal per dag. 110
Koen ME/LC @helldogbe.bsky.social · 11/03/2025Voor ME al LDN of LDA geprobeerd? Voor POTS Mestinon? longcovidcentrum.nl/de-behandeli...longcovidcentrum.nlDe behandeling van POTS bij Long COVID | Long Covid Centrum2 januari 2023 De tekst van de podcast die je vindt op www.mepodcast.nl Vandaag praten we over de behandeling van POTS, maar voordat we daaraan beginnen wik ik nog even de criteria in herinnerring bre... 000
Koen ME/LC @helldogbe.bsky.social · 08/03/2025Isn't the Universal Credit already ridiculously low? As in not enough to live from? Or are there other systems in place to prevent sick people from going bankrupt/homeless? 310
Koen ME/LC @helldogbe.bsky.social · 08/03/2025What dose are you trying? I tried 2mg up to 5mg once a week for 2 months but couldn't feel a thing either. Best of luck! 110
Koen ME/LC @helldogbe.bsky.social · 05/03/2025So sorry to hear you're under pressure to either recover or lose benefits. It's an impossible task proving they don't understand the nature or recovery rates of this disease. Wish I had some helpful advice but as you're aware I'm in a similar scenario. It's that they don't want to understand... 110
Koen ME/LC @helldogbe.bsky.social · 03/03/2025Not a Neuro SPECT-scan by any chance? In need of some objective proof ASAP myself! In Belgium we lack basic education on #LongCOVID with healthcare providers... 120
Koen ME/LC @helldogbe.bsky.social · 03/03/2025Low spoonie version of the PEM study of cerebrospinal fluid alterations in #MECFS 13011
Koen ME/LC @helldogbe.bsky.social · 03/03/2025Een clinical trial die voor (zware) PEM weinig te bieden heeft. Hopelijk wat toename in levenskwaliteit voor sommigen, maar niet iets met de potentie dat je er als ernstig geinvalideerde terug van kan werken in mijn ervaring. 110
Koen ME/LC @helldogbe.bsky.social · 01/03/2025Zorgwekkend, maar verklaart ook waarom mijn controlearts (België) niet wil weten van een aanslepende LC. Wou ook geen documentatie wou inkijken ivm post-exertionele malaise, long covid symptomen, herstelkans enz. 000
Koen ME/LC @helldogbe.bsky.social · 28/02/2025One of my last fun trips in 2020. Wish I kept more pictures of 2021 when I was still able to go on small walks with #LongCOVID as well as my temporary remission on Meloxicam (NSAID which allowed me to exercise and go back to work for a few months). Now I can't even stand YouTube rollercoasters. 010
Koen ME/LC @helldogbe.bsky.social · 27/02/2025Zielig, incel... Dat lost het probleem niet op dat ook ik brave huisvaders ken die naar Joe Rogan luisteren en er twijfelachtige ideeën opdoen. Net als 20miljoen andere subscribers van z'n podcast, waar Spotify trouwens een deal van $250mio aan gaf. 010
Koen ME/LC @helldogbe.bsky.social · 27/02/2025We hebben een excuus om de ondertiteling aan te zetten😇 Het was bij mij toch hier en daar echt nodig, naar het Engels natuurlijk. 😂 Le bureau des légendes toevallig 2 maand terug gekeken toen ik een betere periode had. De moeite om te bingen. 110
Koen ME/LC @helldogbe.bsky.social · 26/02/2025That 300k house from ten years ago is now 500k. Inflation on large sums can't be outsaved on a single wage. Becoming disabled and living alone definitely doesn't help. 120
Koen ME/LC @helldogbe.bsky.social · 25/02/2025Graag gedaan. Deze pagina heeft ook een mooie PDF onder 'relevante links': mecvs.nl/nieuws/belei....mecvs.nlDe inzet van LDN bij ME/CVS - MECVS NederlandVermoeidheidkliniek zet LDN standaard in bij behandeling Low Dose Naltrexon (LDN) wordt al langer ingezet bij de behandeling van ME/CVS. Naltrexon is een ontwenningsmiddel. Het is een hulpmiddel dat v... 010
Koen ME/LC @helldogbe.bsky.social · 25/02/2025De prijs is nog te overzien, als het helpt: www.mijnapotheek.nl/ldnmijnapotheek.nlLDN capsules en druppels - mijnapotheek.nlLDN of lage dosis Naltrexon HCl is een receptplichtige geneesmiddel dat door MijnApotheek.nl wordt bereid. 120
Koen ME/LC @helldogbe.bsky.social · 25/02/2025It makes me angry when the reality of my existence is being denied. But I don't have the spoons to fight the medical system, nor to get the right support to deal with the medical trauma. For now I have to be content with disability pay and being alive it seems. Bottom rung on the Maslow pyramid. 110
Koen ME/LC @helldogbe.bsky.social · 25/02/2025Gez Medinger's latest short clip (9min) on fasting for #LongCovid TLDW: extended fasting (no solid food for 1-3 weeks) could help with inflammatory conditionsyoutu.beExtended Fasting: An Effective Intervention for Long Covid? | The Rationale and the ScienceYouTube video by Gez Medinger 371
Koen ME/LC @helldogbe.bsky.social · 24/02/2025Worst of all I had brought documentation from reputable sources about LC prevalence, list of symptoms, mechanisms of physiological illness and explanation of post-exertional malaise. They refused to look at any of it. Citing that is for my treating doctors while denying the existence of LC 🤯 110
Koen ME/LC @helldogbe.bsky.social · 24/02/2025They have prolonged my disability status, but did not believe or know about long covid at all. In their opinion all covid consequences resolve quickly and it definitely can't be due to an infection that I have these neurological problems 4 years later. State of healthcare for #LongCovid in Belgium 130
Koen ME/LC @helldogbe.bsky.social · 24/02/2025Wat ik ook soms doe is het NL of ENG nieuwsartikel van 1 à 2p vooraan steken en dan de studie zelf erachter te nieten. Dan heeft men de keuze om iets toegankelijks te lezen, maar ook de wetenschappelijke onderbouwing te verifiëren. 110
Koen ME/LC @helldogbe.bsky.social · 24/02/2025Ieder artikel heeft ook de originele bron vermeld, dat zijn telkens hele lange teksten van 10p. of meer. Ik neem altijd een mix van artikels en studies mee. In mijn ervaring komen artsen toch niet veel verder dan het abstract. Ik highlight ook al zelf in de PDF wat op mij meest van toepassing is. 210
Koen ME/LC @helldogbe.bsky.social · 24/02/2025I'll cheat with more than one and say these in Dutch: PEM explainer: www.c-support.nu/wp-content/u... Samenvatting uit 2023: www.c-support.nu/long-covid-e... Mechanismes en behandeling eind 2024: www.c-support.nu/mechanismes-... Zieker van inspanning: www.revalidatie.nl/ntr/patiente... 110
Koen ME/LC @helldogbe.bsky.social · 23/02/2025This was my first google result that had a positive endpoint for probiotics: www.newscientist.com/article/2409... Can't testify to the quality of the study or wether the results have been replicated yet.newscientist.comProbiotics helped reduce fatigue and memory loss from long covidA study involving more than 450 people found that a mixture of prebiotics and probiotics alleviated some symptoms of long covid when taken daily for six months 010
Koen ME/LC @helldogbe.bsky.social · 23/02/2025And every time your mana bar hits zero from overextending, your permanent debuffs get worse and you permanently lose stat points! 010
Koen ME/LC @helldogbe.bsky.social · 23/02/2025Please don't! I spent 8 months exercising my way through and went from mostly housebound and being able to go out twice a week to mostly bedbound and only going out for medical appointments. Not to mention my cognitive PEM has gotten way worse as well, so now I'm bored 24/7. 000
Koen ME/LC @helldogbe.bsky.social · 22/02/2025And the video:youtu.beThe Power Crisis Behind Long Covid & ME/CFS | Latest Mitochondrial Research ExplainedYouTube video by Gez Medinger 253
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Gez Medinger's latest video explains mitochondrial dysfunction's role in long covid and ME/CFS and outlines how damaged mitochondria in skeletal muscles lead to energy production issues. Low spoonie version in images below. TLDR: extended fasting might help and will be explained in the next video 362
Koen ME/LC @helldogbe.bsky.social · 22/02/2025That's some good news! My disability review is coming up on Monday, have had terrible experiences in the past. Different doc this time, so fingers crossed 3 years later they have learnt some lessons on postcovid/ME 🤞 110
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Covid is natuurlijk volledig out voor diegenen die niet getroffen zijn. Nu toegeven dat er gevolgen zijn waardoor er veel geld moet uitgetrokken worden lijkt wel politieke zelfmoord met de hoeveelheid mensen die alles aan de vaccins toe schrijven. Liever de hele pagina uit de geschiedenis wissen. 000
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Frappant hoe we liever zovele miljoenen naar uitkeringen laten gaan. Genoeg studies over de economische impact, lijkt wel het typische kortetermijndenken waardoor politieke wil (of is het kennis?) ontbreekt. Wanneer wordt onze brandhaard groot genoeg om te blussen? 100
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Klinkt idd als symptoombestrijding met offlabel meds gekend voor ME, waarvan we weten dat de winst in levenskwaliteit beperkt is. Vooral dat er geen extra budgetten zijn voor biomedisch onderzoek om echt de bron van het probleem te vinden en medicatie te ontwikkelen op een dierlijk model. 000
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Moesten we nu nog het gevoel krijgen dat men er op grote schaal wat aan wil doen... Ondertussen 4 jaar ver met deze sh*t! 000
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Is he your only carer or is your mom still there for you? I can empathize with your dilemma and worries. Trust that the hospital provides good care. He's aware of your condition and there's nothing you can do that you wouldn't be able to do over the phone if he were able to communicate. 210
Koen ME/LC @helldogbe.bsky.social · 22/02/2025Sorry to hear your dad's not doing well. I hope he pulls through so that you can spend a few more years together. It's awful seeing a parent go. Especially in our condition where we're still dependent on them and have to wonder how we'll manage without. 110
Koen ME/LC @helldogbe.bsky.social · 22/02/2025They're fitting a load of physiological findings consistent with a persistent viral infection in LongCovid to the biopsychosocial model. Worrisome... 010
Koen ME/LC @helldogbe.bsky.social · 21/02/2025This is a really good page that explains how brainfog feels to me during bad PEM days! 000
