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Trip to the charite in Berlin, part 11

There followed a few paragraphs of general information on the causes and treatment of CFS:

Prolonged fatigue also often occurs as a result of EBV infection or herpes reactivation. It is believed that one cause of CFS is chronic immune activation / autoimmunity and this is directed against adrenergic receptors at least in a subset of patients. In addition to the severe fatigue, almost all patients suffer from cognitive disorders and sleep disorders, and many patients also suffer from a strong sensitivity to stimuli similar to migraine patients during an attack. Many patients also have a sore throat, joint pain, and flu-like symptoms. As a correlate for immune activation, a T-cell activation or immunoglobulin increase is found in some patients. This was not observed in the case of TiredSam.

Many patients suffer from mild rhinitis / sinusitis, frequent infections and irritable bowl syndrome. Often there is also an immunodeficiency, about 1/3 of the patients have a detectable immunoglobulin deficiency, about 15% a lack of complement-activating factor mannan-binding lectin. TiredSam has a slight IgG deficiency, however, he denies having an increased susceptibility to infection. (Quite the opposite, I almost never come down with anything).

A dysfunction of the autonomic nervous system is another common symptom of CFS, which is determined using the COMPASS questionnaire.

Fatigue can also occur in connection with many other diseases (autoimmune diseases, chronic infections, endocrine disorders, cardiovascular disorders, neurological disorders, depression, medication side effects), therefore a diagnosis by exclusion of other diseases should be carried out. (I’ve done all that). No evidence for another cause of fatigue was shown by our laboratory diagnostics for our hero of the story, TiredSam.

The treatment of CFS is currently symptomatic and a "therapy of small steps":
  • Treat infections and other causes of immune activation
  • Remedy deficiencies
  • Treat the distressing symptoms of the disease
  • Avoid any form of over-exertion which leads to a deterioration of symptoms.
A worsening of symptoms due to exertion is a cardinal symptom of CFS, continuous over-exertion can lead to a permanent decline. Learning techniques for stress reduction is also often helpful.

Studies show symptom-oriented treatment leads to an improvement in most patients, although CFS is often a chronic disease. Immunomodulatory therapies have so far only been tested in studies and are currently not approved or reimbursed by health insurance.

In the majority of patients CFS is triggered by an infection, and about half of patients also suffer from frequent and prolonged infections, which often lead to an increase in symptoms. Approximately 25% of patients have an immunoglobulin deficiency.

There are also a large number of treatment recommendations for CFS, but so far few are evidence-based. Our treatment recommendations are evidence-based, however often only on the basis of non-controlled clinical trials. We have little experience with some of the treatment recommendations.

Next section – their specific treatment recommendations …

Comments

Sam, in your opinion if someone did not have fatigue, cognitive issues, sleep disorders, migraines, sore throat, joint pain, immune deficiency, etc, but DID have positive viral titers, did have autonomic problems (POTS, low BP, OI, dyspnea,... pretty much all of them) plus neuromuscular problems, MCAS and clear autoimmune markers, would the Charite label this as ME/CFS or something different?

Am so curious how these "similar but different" illnesses are viewed in other countries at centers of expertise like the Charite who seem to focus on the autoantibodies (Dr. Shiebenbogen's research). No worries if you do not know and I really enjoy reading each of your updates. Am looking forward to the next installment!
 
I don't think they'd label it as CFS - they use the CCC and regard PEM as a cardinal symptom. They are an immunology department so that's their expertise, and the direction their research takes, but I think they're pretty clued up on most aspects of CFS too. It's a diagnosis of exclusion based on the symptoms the patient describes, if they happen to find irregularities in your immune system then that's a bonus and you've got lucky.
 
Thanks for explaining, Sam, and I really appreciate it. There are so few docs worldwide who focus on autoantibodies which is why I was curious how Dr. Schiebenbogen would label someone like me.

I am doing her test tomorrow for the nine autoantibodies and the results will help me to decide (much later, not now) if seeing someone like her would add to my clinical picture or course of treatment. Actually am certain it would but I'm in the US and really need to find someone here.

Am determined not to take this off topic though so will stop now! Am looking forward to hearing the recommendations they made for you next! Thanks for sharing your journey.
 
They are fantastically thorough aren't they? im very impressed. Do they run any paenls for chornic bacterial infections etc? also keen to know if they see patients from outside of Germany privaelty or if the autoantibody test is available @Gingergrrl?
 
Don't know about what else they do, you can browse around here (many webpages also in English):
https://immunologie.charite.de/en/patient_care/immunodeficiency_outpatient_clinic/chronic_fatigue_syndrome/
Don't think they see non-Germans, but don't quote me on that.
 
Justy, I have not looked at the website yet that Sam posted and I have no idea if they see non-Germans. But I just did the blood draw this morning that is being sent to their lab in Germany (Cell Trend) to test for all nine of the auto-antibodies. I posted about it in another thread but let me know if you have any questions and am happy to try to answer them!

ETA: I looked at the website and it has completely different info and different address than Cell Trend Lab so now I am not sure exactly how they are connected. The website seems focused on immune deficiency whereas the lab tests (that I am doing) are all for autoimmune antibodies.

@tiredsam Is the connection that Dr. Schiebenbogen is associated with both but they are separate entities?
 
Hi @TiredSam, I've finally got around to reading the whole story so far. Fascinating and very well told. Any news on the treatment recommendations? Especially good to see this bit: A worsening of symptoms due to exertion is a cardinal symptom of CFS, continuous over-exertion can lead to a permanent decline. I wish we could get the NICE guidelines in the UK to recognise this from both a diagnostic and treatment perspective.
 
Bad news from the Charite: From now on they only accept patients from the region of Berlin/Brandenburg (where the Charite is located): https://immunologie.charite.de/patientenversorgung/immundefekt_ambulanz/chronisches_fatigueerschoepfungs_syndrom_cfs/
It´s understandable, as they`re a team of only four doctors (and CFS is only one of the illnesses they are responsible for at the Charite plus teaching and research), but it´s still really sad, because it leaves the other German patients with no one to diagnose them:(
 
Looks like they're setting up a telephone scheme where doctors with ME patients can get advice on how to treat them, and offering doctors regular training sessions at the Charite. So other German patients can now be diagnosed and treated by the local doctors, who have access to the Charite's expertise and advice under this system. If it works it'll be much better than having a doctor being mis-informed by NICE guidelines (or the Robert Koch Institute). Be good for patients to be able to put their doctors in touch with the Charite, hopefully it'll work well.

@Joh was wondering if you got your report yet?
 
Hi Tired Sam,
Thanks for asking!
Yes, got my brown envelope after 17 weeks and with it a "real" diagnosis, too: CFS and suspected POTS. They called it postviral CFS (I guess because it started with a flu in 2002). I hoped the report would change something, but so far it hasn´t helped with doctors (my GP isn´t even interested enough to read it and told me the recommendations were "ridiculous", the cardiologist denied a tilt table test). It´s hard to be taken seriously, because the report basicly says "It´s CFS, but we can´t prove it and now we´ll list the blood results that sound healthy", so it didn´t even convince my family :(
I believe the Charité offered the telephone scheme and training sessions (2 hours) for a while now, but I agree, it would be great and extremely helpful if they develop some kind of guidelines for doctors.
Looking forward to your part 12 :)
 
Hi, it's me again about the Charité. They put two new papers (or excerpts from a medical book) on the website (in German). At first I was so happy to be able to bring my GP brandnew facts about CFS in German and thought it might help me to finally get some sort of treatment. But then I read this stuff and I wouldn´t let any medical professional (or anybody at all) near those papers: It's only Fukuda, Chalder fatigue scale, that CBT and graded activity (not GET) is helpful and the last sentence is, that patients, who focus on their symptoms have a bad prognosis. It sounds like something from 20 years ago. I'm confused and upset - what's going on in the Charité? If you have the time, maybe you could check, if I'm overreacting?
 
Hi,
Your question has spured me to finally finish this blog series, so I'll answer it in a future installment, coming soon!
 

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