Contacting researchers

Wyva

Wyva

Senior Member (Voting Rights)
So there was this study a couple of months ago in Hungary: Severe Fatigue and Memory Impairment Are Associated with Lower Serum Level of Anti-SARS-CoV-2 Antibodies in pw Post-COVID (...), 2021, Molnar et al

You can see in the thread that the researchers also made comparisons with ME/CFS and described a few potential mechanisms. Since there is basically no biomedical ME/CFS research here, even then I was thinking about reaching out and asking if they were planning some more research in this direction in connection with ME/CFS and long covid (but I was either way too sick or way too busy with other advocacy stuff back then).

So my question is: Is it a good idea to reach out? I don't want to look like I'm pestering them.

I have this kind of worry because they are from the University of Pécs. Professor Janszky, the neurologist who parroted the British BPS narrative about ME/CFS at the National Academy's post-covid symposium is at the same university (and I sent a letter complaining about his lecture). I also messaged another professor from the same university earlier who kind of not very enthusiastically replied to my first few messages but stopped replying altogether when I indirectly asked for help in advocacy (he seemed to have a biomedical view of the disease but later I realised he actually understood or knew very little about it). So I'm not sure if I have a "pestering" reputation there or not. :)

What do you think? Am I overthinking this or should I leave them be, at least now?
 
Yes, you should. Most academics (in the USA at least) have a component of their performance plan that is tied to community outreach/interaction. You should also mention that people who have had "Long Covid" for six months with the symptoms of ME/CFS, in fact, by definition, have ME/CFS.
 
Also a better title for this thread is "Do researchers have a responsibility or obligation to respond to queries from non-academics/patients/laypeople", and my response is that in general, they should respond.
 
I'd say, yes, reach out and see what happens. They don't necessarily know or agree with what others in the same university think, especially if they are not in the same department. It only becomes pestering if you persist after someone has asked you not to contact them again.
 
Michiel Tack said:
I would also give them a short and polite message about how you hope that they continue studying ME/CFS, that it is under researched, that it means a lot to patients etc.

EMEC has made an overview of potential funding sources and networks that might be handy in this case:
https://europeanmecoalition.com/resources-for-researchers/
Click to expand...

So in the end I sent a message similar to what you suggested. In short:

- thanked them for drawing a parallel with ME/CFS in their studies
- asked them if they are planning to research ME/CFS more or research ME/CFS along with long covid
- told them that patients are extremely grateful for any kind of biomedical research that may contribute to understanding the disease
- told them that I understand that funding for ME/CFS research is scarce and sent them your link

They replied and although they didn't answer my question about further ME/CFS-related research, they said they were going to check out the links I sent. (I guess by linkS they meant yours and the one pointing to my ME/CFS website, which I only used as a signature.)

It was a very short one sentence reply but omicron is still very busy here (we had record high numbers of new cases just a couple of days ago), everyone in healthcare is overworked, so that's kind of understandable.
 
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