Dr Hanitsch said that I was a very atypical CFS patient in two respects:
Firstly, my PEM triggers are only physical. I only get symptomatic when I’ve overdone it physically, although this can include sitting at my computer for too long etc. Although I experience brain fog, memory loss, trouble finding words etc, these are only symptoms that occur once I’ve overdone walking around, sitting up straight, or being generally active for more than a few hours. Emotional or intellectual stress isn’t a trigger that leads to a worsening of my symptoms. I agreed with him that I did seem to be unusual amongst CFS patients in this respect, and in fact that was the reason why my local CFS self-help group has elected me to be the treasurer – I am the only one who’s mentally fit enough to do the numbers. That seemed to amuse him.
Secondly, he regarded it as very unusual that I did not have an increased susceptibility to infections. I don’t have any swollen lymph nodes or frequent infections, and rarely get “normally ill”.
I must say I was rather surprised and disappointed by this, because I thought there was a sub-set of ME patients who hardly ever get infections, perhaps because their immune system is in overdrive, at least for the first 3 years, and that by presenting myself within the first 3 years I might be of more interest to them (eg for possible inclusion in clinical trials).
This might have something to do with the form doctors have to fill in and sign in order for their patient to get an appointment at the Charite, which says that the patient must fulfil the following criteria:
1. The fatigue has existed for longer than 6 months
2. The fatigue began with an infection
3. The patient suffers from an increased susceptibility to infection (frequency and / or severity of infections)
4. The patient reports a long-lasting increase in symptoms after exertion (PEM)
Number 3 was a bit iffy in my case, but I felt I could honestly answer yes to it because on the rare occasions when I’ve had an infection, the ME symptoms have come on top of it and completely wiped me out.
But I speculate that question 3 may be a reason why Dr Hanitsch was so surprised to see someone like me, because it may discourage patients who don’t have a lot of infections, or may prevent their Dr from sending them, or may prevent the Charite from giving them an appointment.
So if I understood Dr Hanitsch correctly (and I may not have), the Charite seems most interested in the subset of ME patients with increased susceptibility to infection. Oh well.
He told me that they have a guy who specialises more in the fatigue side of things, but that he wasn’t in today.
Thinking I’d better just check, I said “will I get a diagnosis?”
Firstly, my PEM triggers are only physical. I only get symptomatic when I’ve overdone it physically, although this can include sitting at my computer for too long etc. Although I experience brain fog, memory loss, trouble finding words etc, these are only symptoms that occur once I’ve overdone walking around, sitting up straight, or being generally active for more than a few hours. Emotional or intellectual stress isn’t a trigger that leads to a worsening of my symptoms. I agreed with him that I did seem to be unusual amongst CFS patients in this respect, and in fact that was the reason why my local CFS self-help group has elected me to be the treasurer – I am the only one who’s mentally fit enough to do the numbers. That seemed to amuse him.
Secondly, he regarded it as very unusual that I did not have an increased susceptibility to infections. I don’t have any swollen lymph nodes or frequent infections, and rarely get “normally ill”.
I must say I was rather surprised and disappointed by this, because I thought there was a sub-set of ME patients who hardly ever get infections, perhaps because their immune system is in overdrive, at least for the first 3 years, and that by presenting myself within the first 3 years I might be of more interest to them (eg for possible inclusion in clinical trials).
This might have something to do with the form doctors have to fill in and sign in order for their patient to get an appointment at the Charite, which says that the patient must fulfil the following criteria:
1. The fatigue has existed for longer than 6 months
2. The fatigue began with an infection
3. The patient suffers from an increased susceptibility to infection (frequency and / or severity of infections)
4. The patient reports a long-lasting increase in symptoms after exertion (PEM)
Number 3 was a bit iffy in my case, but I felt I could honestly answer yes to it because on the rare occasions when I’ve had an infection, the ME symptoms have come on top of it and completely wiped me out.
But I speculate that question 3 may be a reason why Dr Hanitsch was so surprised to see someone like me, because it may discourage patients who don’t have a lot of infections, or may prevent their Dr from sending them, or may prevent the Charite from giving them an appointment.
So if I understood Dr Hanitsch correctly (and I may not have), the Charite seems most interested in the subset of ME patients with increased susceptibility to infection. Oh well.
He told me that they have a guy who specialises more in the fatigue side of things, but that he wasn’t in today.
Thinking I’d better just check, I said “will I get a diagnosis?”