The continuing worsening of my health & other unavoidable issues surrounding my care make it impossible for me to keep up with X. For me, this is a definite goodbye from this platform. The account will remain online, my family or caregivers might write a post here or there. I am very grateful to too many people here to name, so I won't even try to single out some. I will not give up on living to the best of my abilities for as long as I can. I am sure better days for people with #MECFS are on the horizon. I want to be a witness of that change,

One of the more intriguing anecdotes I have is from before I became seriously ill with #MECFS. My long-term massage therapist mentioned that, having touched muscles of many thousands of patients, mine felt highly peculiar and weird to him – 'doughy,' he described. What is

/1 What is even more interesting is that he said the same thing about my brother, who also has #MECFS, but not about the other one who happily remains healthy to this day. We were not deconditioned at that point in time, quite the opposite. Years later I found Dr. Ramsay

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The complex underpinnings behind the horrific situation and stigma faced by #MECFS & #Longcovid patients are deeply rooted. This issue is multifactorial, involving medical, societal, and systemic factors that have perpetuated the challenges patients endure daily.

/1 To me, it's evident that the medical system's failures (from a moral standpoint) weigh heaviest in this crisis. The dismissal and misdiagnosis of patients is all-pervasive and most professionals are 'guilty' of perpetuating the stigma to some degree. MD's coming to understand

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There are some interventions that I am confident had a slightly positive impact on my #mecfs. Kefir is one of those.

There are risks involved, though, some people react badly. Unfortunately there is no way of telling whether it helps you before trying.

/1 If you give it a go, don't use the single-strain industrial version but the natural "living grains" you can buy at a farmers market. Kefir grains are a mixture of lactic acid bacteria, yeasts, and acetic-acid bacteria, a living organism.

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If your experience of prodromal or early phase #mecfs and #longcovid is like mine, your mental realm will be plagued with (possibly severe) depersonalization, derealization, and brain fog. In my case, these phenomena were so intense I was 100% certain I

/1 must suffer from a rare form of psychosis (i.e.,one without overt hallucinations or delusions). This happened to me almost a decade before #SARSCoV2 entered the stage. #Mecfs was defacto unheard of; brain fog was understood as "pseudoscience," standard lab tests were normal.

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I have a strong feeling that many #POTS patients are in effect in a prodromal phase of #mecfs. Not all #POTS patients will end up with #mecfs, but almost all #mecfs patients had #POTS either before (often unknowingly;"anxiety") or early in their #mecfs course./1 Often these patients with POTS that later develop #mecfs fall into the #hEDS category. Their descent into #mecfs is often but not always triggered by infections or, more generally, inflammatory events (surgery, accidents,..). We don't know what #hEDS is exactly but at /2

We patients are so entrenched in the #mecfs and #longcovid reality we sometimes forget the immensity and absurdity of the situation: the vast majority of the medical field is unaware or dismissive of the idea that post-viral disease (worldwide prevalence ≈ 0,5%) is a real issue. It is mindboggling how far-reaching the implications of this are. How unlikely is such an event? Think about it, post-viral diseases have been an issue forever - how could it be any different, so how can this still be an issue?