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Good point.

Btw, this is totally anecdotal, but I thought I'd share anyway. Some people with LC in my ME/CFS group say their symptoms started 3-4-5 months after the infection. I have posted a poll about gradual vs sudden onset and the voters were a mix of original ME/CFS patients and covid long haulers. I...

I can kind of agree with this. I know that we are not allowed to talk about what is going on in other groups, so feel free to moderate me if this is too much but: my impression here in Hungary is that the only people against the association with ME/CFS are the ones who either don't have LC...

Thanks! I knew a couple of these, even summarized/translated them but not all of them. :) Wow, great timing. :) So I just actually published a post on my ME/CFS page, addressing the entire medical community, asking them not to treat post-covid syndrome automatically as a psychosomatic...

Sorry about the clickbait title. :) So here is my situation and strategy: Right now I am the only person in the entire country advocating for ME/CFS, I'm literally like the Popular Front of Judea. I have a group and followers but they are very passive as it is still quite a new community. I'm...

I just finished watching a Facebook live video about long covid in children, as discussed by four Hungarian doctors, three paediatricians and one infectologist. This is the first in-depth discussion of long covid I've found here. (Sorry, it won't embed it.) It started well (as opposed to...

Really? Hm, mine was quite detailed, they looked at five different values, two of which showed 1) fresh EBV infection, 2) past CMV infection. I had no idea this is not the same elsewhere.

I don't think this affects many people in the West but might be interesting to some in other countries whose government may have ordered from the Russian Sputnik vaccine. In Hungary this vaccine is not recommended for: - people with chronic kidney or liver disease, endocrine diseases - people...

I was actually tested during the infection and later made a habit out of always bringing the test results with me when I see a new doctor, after one once asked in obvious disbelief how I even know that glandular fever started it. (He also happened to tell me it must be...

Interesting you mention this thirst in PEM, @JemPD and @Midnattsol , I have that too but I've always thought it must be somehow connected to my weird excessive full body swelling that comes with PEM. Because when this swelling happens, I go to the bathroom a lot less often and I'm also...

This is a very good topic! a) I think by now it is possible to find all my symptoms in the different descriptions from different specialists. (Everyone recorded something else.) :D M problem is that many of these are incorrectly recorded, for example: I don't have difficulty with breathing...

The next International Classification of Diseases by WHO will list all three under the same code, as a neurological disease. So it looks to me that instead of psychologizing the term CFS and that affecting ME, maybe it is the other way around now, CFS is becoming a synonym to the actual medical...

And what happens to GET proponents if they still deliberately promote it? (Sorry, I'm really not familiar with how this works.)

I've been thinking a lot about this and this is exactly what I do in my ME/CFS Facebook group, where people with long covid are overrepresented due to the current situation (and it being a relatively new group). I don't go around posting this in every Covid group but when they join my group I...

Assessment and management of post‐COVID fatigue It starts alright but then comes up with BPS and CBT and maladaptive behaviours. Is it only me or has the BPS school intensified their efforts to go after post-covid in the past week or so? o_O...

Uh, sounds like gaslighting to me. Even though poor guy even mentioned this is against the recommendation of the long covid clinic.

Mine presents itself in quite an odd way, and I'm not sure how common this is (probably not so much). I think I'll just add more confusion to the subject with this, but here it goes. If we only count physically-induced PEM, I would be a very mild case with a close-to-normal life. I do have PEM...

Oh wow. She would love this too, just saw it today (found it because of the keywords I follow in Google news): How To Understand If Your Teen Is Battling Chronic Fatigue https://www.moms.com/understanding-chronic-fatigue-teens/ This article doesn't even bother not to contradict itself. (I...

Copied post So I am still building the ME/CFS community in Hungary, and as part of that I reached out to an immunologist/rheumatologist, who seems to be much more knowledgeable about this disease than most doctors here (based on the short but on-point summary he posted on his website). And in...

The NHS seems to use CFS/ME. https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/