Trip to the charite in Berlin, part 4

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?”

Comments

That's very surprising about the increased susceptibility to infections, especially if Charite is looking at auto-immune/antibody component which would emphacize overactive immune systems. i am 7.5 years into my textbook EBV-onset ME, and I have yet to have 1 cold.
 
It surprised me because I had only read the German version of their website:

http://immunologie.charite.de/patientenversorgung/immundefekt_ambulanz/chronisches_erschoepfungs_syndrom_cfs/

which says this:

Bei einem Teil der Patienten findet sich ein Immundefekt.

ie they only mention "Immundefekt". Now I notice that if you click on the English flag, they have translated it into this:

" In a subset of patient CFS is associated with a chronic infection or immunodeficiency. "

So they are suddenly emphasising chronic infection, even though there was no mention of it on the German page.
 
But immuno-defect (sorry I am not german but I speak french- means defect in immune system, as in low NK cells. We know NK cells attack viruses and cancer cells, but not necessarily bacteria. I wonder what prof. Carmen has to say about that.
 
I'm another who, even before ME, almost never got colds or flu. Instead, asthma, low-back inflammation, frozen shoulder, hypothyroid: autoimmune problems. So sorry to hear of their position.
 
Strange about the requirement no. 3.
My understanding was that it was an observation that there are two groups of patients - one who get infections the other group who doesn't.
But are there any studies on this and what it might mean specifically. ?
Surprised that they would use it as a check for admission.
 
I think my case has been classic in that for the first few years I was scared to go outside or meet anyone for fear of picking up yet another infection or bug. 5 years in that all changed - I now am in the opposite category of never being classically ill. If rarely I am it is low grade and just rumbles on for weeks and weeks. I seem to have become immune overdrive. My NK cell expression is high, not low, but then I have a dx of Lyme and co infections.
 
It's not the symptoms, it's the triggers. Many ME sufferers find stuff like trying to watch TV, reading, having a conversation, getting into an argument with a friend, makes them crash. None of that bothers me, I can do it for hours without crashing.

Once I have pushed myself too far physically and become symptomatic, then I have cognitive problems too, ie brain fog, finding words, remembering, following a conversation, but those things don't cause a crash in the first place, they just start happening as a result of me overdoing it physically.

Although I have started to notice that my short-term memory is becoming completely crap nearly all of the time now. Ask me what I did two days ago and I won't have a clue.
 
Criteria 3 says, in part "(frequency and / or severity of infections)". Since you meet the severity part, I don't see why they should have a problem accepting you as a patient.
 
In terms of not crashing due to emotional and mental stimulus. I wonder if this is partly related to severity. Where are you on the Bell scale? are you mild/mod/severe (or any shade in between)? When I was more mildly affected talking wouldn't crash me. Since being more severe talking, laughing, crying, arguing all cause a huge crash - at times I cant talk at all, although it doesn't last long. My short term memory is completely shot - and I get very confused about things. But we are all different - I can still read and retain written information very well - even at my worst, which is great for me as im 5 years in to a degree with the OU.
 
Little Bluestem - *SPOILER ALERT* - they have accepted me, but I think my chances of being in clinical trials may be lower, although I may have misunderstood that.

Justy - I'm mild by PR standards. I'm between 30 and 50 on the Bell Scale, although I found that difficult to fill in because there are a few sentences in each section, some of which apply to me and some don't. If I was allowed to pick from the sentences in sections 30, 40 and 50 I could put together a fairly accurate description of my level. I think it may well be related to severity too. Great that you can study, good luck with your degree!

I'm having memory problems at the moment - I know there was something I was supposed to do about a "blog", whatever that is, but I can't remember what.
 
"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"

Yep, count me in on this group... though I'm not sure if I'm not catching illnesses or simply not reacting to them.
 
"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."

This might be a reason why their short trial of Rituximab didn't bring any benefit. It may be the case that Rtx helps people the most whose immune system is in "overdrive" as you described it and who never get infections, e.g. @Gingergrrl.

If patient selection at the Charite is as you suspect, they only have the patients whose immune system is underactive rather than overactive, and it wouldn't be a big surprise that their Rtx trial failed or even made people worse.

Disclaimer: Just my personal speculation.
 

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