Wyva
Senior Member (Voting Rights)
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 not a medically trained person, so I can only rely on other, trusted sources to support whatever I say. That's why I have summarized a lot of great information from English sources on my FB page. Let those speak for themselves.
Now that long covid is being talked more and more about here, there is a chance it will be psychologized and I don't really want to sit in silence about that. The first wave of covid here was tiny so people are only realizing now the long-lasting effects.
I would like to address some doctors' opinions, statements in FB comments etc and refer to sources that are trusted, respected, well-known both by medical professionals and just people in general, to support what I say, instead of coming up with studies no one will read. I can write a lot on my FB page but under some doc's opinion, I will only have one short comment to raise attention before being scrolled over. So I need something that might "pack a punch" and raise eyebrows on both sides and get the attention, simply because it comes from such a validating source.
What I mean: Referring to the CDC's website and that it says ME/CFS is biological is great and the IOM report is great. The draft of the proposed NICE guideline is great. The WHO classification of the disease is great. These organizations have enough respect, so I can very effectively use them and have indeed done so. (In Hungary we have no ME/CFS guidelines at all, except that it is listed as a neurological illness among the GP's responsibilites - not specialists' -, and that's it.)
My issue is not about finding enough solid sources for ME/CFS but about making the connection with long covid in my arguments. I mean I'm a nobody, no one cares if I say they are similar, there has to be more. So far I used Anthony Fauci's comparison from July and also a prominent infectologist in Hungary mentioned it in August, those were very useful to me.
However, I feel, a lot of time has passed since and there has been too much silence about this lately and I would really appreciate it if I could find more, similarly trusted, easily understandable sources I could refer to. So please let me know if there is more I could use. I understand there may not be and I know everyone is waiting for the NIH now to say something, but I wanted to ask, just in case I missed something. It can come from any country if it's from an organization or person with a lot of authority there.
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 not a medically trained person, so I can only rely on other, trusted sources to support whatever I say. That's why I have summarized a lot of great information from English sources on my FB page. Let those speak for themselves.
Now that long covid is being talked more and more about here, there is a chance it will be psychologized and I don't really want to sit in silence about that. The first wave of covid here was tiny so people are only realizing now the long-lasting effects.
I would like to address some doctors' opinions, statements in FB comments etc and refer to sources that are trusted, respected, well-known both by medical professionals and just people in general, to support what I say, instead of coming up with studies no one will read. I can write a lot on my FB page but under some doc's opinion, I will only have one short comment to raise attention before being scrolled over. So I need something that might "pack a punch" and raise eyebrows on both sides and get the attention, simply because it comes from such a validating source.
What I mean: Referring to the CDC's website and that it says ME/CFS is biological is great and the IOM report is great. The draft of the proposed NICE guideline is great. The WHO classification of the disease is great. These organizations have enough respect, so I can very effectively use them and have indeed done so. (In Hungary we have no ME/CFS guidelines at all, except that it is listed as a neurological illness among the GP's responsibilites - not specialists' -, and that's it.)
My issue is not about finding enough solid sources for ME/CFS but about making the connection with long covid in my arguments. I mean I'm a nobody, no one cares if I say they are similar, there has to be more. So far I used Anthony Fauci's comparison from July and also a prominent infectologist in Hungary mentioned it in August, those were very useful to me.
However, I feel, a lot of time has passed since and there has been too much silence about this lately and I would really appreciate it if I could find more, similarly trusted, easily understandable sources I could refer to. So please let me know if there is more I could use. I understand there may not be and I know everyone is waiting for the NIH now to say something, but I wanted to ask, just in case I missed something. It can come from any country if it's from an organization or person with a lot of authority there.
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