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CC: In The Invisible Kingdom, you write that if every age has its “signature disease,” ours is the type of chronic illness that tends to go unrecognized in tests and is often viewed with skepticism by the medical establishment. This includes post-treatment Lyme disease syndrome, which you were...

The person in my group who turned out to have myasthenia gravis is convinced that she has PEM. I remember reading it in the IOM report that a lot of people with multiple sclerosis reported they had PEM. I don't know if these are really the same though or similar-sounding but different effects...

Parliamentary questions 27 June 2022 O-000026/2022 Question for oral answer O-000026/2022 to the Commission Rule 136 Pascal Arimont, Dolors Montserrat, Radan Kanev, Cindy Franssen, Sirpa Pietikäinen, Frances Fitzgerald on behalf of the PPE Group Subject: Lack of tangible results following...

The UK’s IAPT Service Is an Abject Failure By Michael Scott It is a longer article but ME/CFS and MUS in general are also mentioned: IAPT appears not to so much follow the data, but to follow funding opportunities. It has branched out into territory were angels fear to tread: Medically...

An abstract for a presentation at the Congess of the Hungarian Society of Nuclear Medicine, titled Examination and follow-up of COVID-19 disease by brain PET / CT examination. It is about a study that seems to confirm the changes in the brain scans after covid, reported elsewhere, but they also...

This is also very high in Hungary, one of the highest in Europe: 40%. But it wasn't like this originally, it has only changed in the past few decades. It has of course several reasons probably but here a big contributing factor may be the fact there aren't enough doctors anymore and thus...

Abstract Background: Several studies have reported post-COVID-19 fatigue in the general population, but none explored post-COVID-19 fatigue among pregnant women. The objectives of this study were to determine the prevalence over time, duration and risk factors of post-viral fatigue among...

Recently, since I've been getting worse, my GP decided to test me for a range of different viruses (for example several different herpesviruses, hepatitis viruses), just to exclude some sort of weird acute infection. (And I was also retested for EBV, which was my trigger.) Well, a lot of the...

So Dr Hng replied to me, said it was a mistake and apologized. (And had also deleted the problematic post even before reading my message, after she realized the mistake herself.)

I'm not a member of that group so whatever happens I won't be able to see it. So if whoever is a member I appreciate letting me know if something regarding me happens again.

So they are obviously reading this thread. Why don't they just come here and ask us? They can see this is S4ME, it is full of patients and advocates, it is not some anti-ME headquarters. In this light, this is even more concerning.

The funny thing is that she is supposed to know me! We are Facebook friends, she added me a while ago. We even had some conversation about my advocacy and she asked me to translate her works to Hungarian (which I couldn't, there was too much on my plate already). (And I have the same photo on...

Communicating at the highest levels and yet:

MedPage Today: RECOVER Researchers Express Hope and Frustration in Their Study of Long COVID — Like "trying to build an airplane as it is rolling down the runway" An article about why NIH's long covid study, the RECOVER initiative is materializing so slowly: Koroshetz compared long COVID to...

Abstract Objective We conducted literature reviews to uncover differential effects of sex on sequelae from coronavirus disease 2019 (COVID-19) and on long COVID syndrome. Methods Two authors independently searched OvidSP in Embase, Medline, Biosis, and Derwent Drug File. Publications reporting...

Of course I don't know the whole context of the situation but I remember that the Austrian health minister, Wolfgang Mückstein (the one wearing the ME/CFS T-shirt in the photo) resigned a couple of months ago. The Austrian Health Minister Wolfgang Mückstein has announced his resignation less...

My sister (only sibling) has Hashimoto's thyroiditis and so do I. My mom has vitiligo, which is believed to be autoimmune. I had sudden viral onset. I started at the lower end of moderate, initially (in the first 2-3 years) improved a lot to very mild, then started to fluctuate.