Do you get infections, or do you get ME/CFS flare-up from virus or bacteria attacking your body?
Do you get new symptoms like high fever, lung infection, vomiting, etc. Does your blood count show an infection?
Or is it sore throats, mild fever, achiness, fatigue, being out of breath, having tachycardia etc?
I get infections from virus and bacteria. I contract whatever anyone has who comes close to me (and I'm house-bound, so I see very few people, but if there is a hint of a bug, I get it) - colds, flus, stomach viruses, etc. Very clear these are not ME flare-ups (I have those as well of course, but they are different). I also get skin infections with obvious bacterial causes.
And I know a lot of ME patients who are the same - the opposite of "sick but never sick".
The ME patient community seems to be divided into two groups: those who since onset of ME are
more susceptible to infections (”sick with ME and on top of that often sick with bugs”), and those who since onset contract fewer infections, even close to none ("sick but never sick").
The increased susceptibility group (more infections, very easily contracted) is rather large in my experience (as an ME advocate in Sweden, I’m in touch with at lot of patients as well as researchers and clinicians). I don’t think anyone knows the percentages of the two groups, but my guess would be that the increased susceptibility group is the larger one, or at least as large as the “sick but never sick” group.
I know the Norwegian researchers studying rituximab and cyclophosphamide are very interested in this division and have added a question about susceptibility to infections to the DePaul Questionnaire which they are using to monitor ME symptoms.
It would be great if Jason and colleagues could include it in the DSQ.