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TiredSam
- Author TiredSam
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So, after over 2 years of doing the rounds to have everything tested and excluded, learning about pacing, tracking my activities and refining my routines, and waiting for my Charite appointment, I now found myself with no future actions pending and nothing to do.
I read the last two lines of...
Here are the treatment recommendations in my letter from the Charite:
Recommendations:
Vitamin D 1000 E daily in the morning eg Vigantol
Zinc, selenium, iron, magnesium, phosphate, supplement if deficient
• Zinc eg zinc aspartate capsules N2 2x20 mg for 4 weeks
• Selenium eg Selenase Tbl. N2...
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...
Before I became ill, I would go to an English-speaking “Stammtisch” (regular meeting in a pub, a very German tradition) once a week. We were a small band of native English speakers, UK or US.
At the beginning of the evening we would talk about serious stuff, books we’d read, the latest news and...
The report was 6 pages long, and started with the following:
Diagnoses:
Chronic Fatigue Syndrome (CFS) (G93.3)
No indication of immunodeficiency (D84.9A)
The WHO’s ICD codes 2016 section G93 is “Other disorders of the brain”, and G93.3 includes benign myalgic encephalomyelitis, chronic...
And so May turned to June, and June turned to July. The 8-week point came and went, 9 weeks … Finally it was decided that on the Monday of week 10 my wife would phone them (she’s better at “dealing with people”), but as it turned out, on Saturday evening of week 9, a large brown envelope arrived...
Although I had delivered the statement “the reason I ask is because of the PACE trial” in my best up-speak, implying questions such as “Have you heard of the PACE trial?”, “What do you think of the PACE trial?” etc etc, Dr Hanitsch, unlike my blood, was not to be so easily drawn.
If one day I...
Dr Hanitsch explained to me that he had had to give evidence in court, and there had been an issue about the different ability / fatigue scales used by the two sides, so now the Charite asks patients to fill in a range of questionnaires. I considered this to be a much better answer than “Oh, we...
I was reminded of a passage from Osler’s Web, where Hillary Johnson describes a neurologist talking about the difficulty of diagnosing MS:
So I was wondering if my confusing hodgepodge and failure to cooperate was going to get me into trouble when I asked Dr Hanitsch if I would be getting a...
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...
Dr Hanitsch must have heard me speaking English to my wife, because he greeting me in English and that remained the language of our whole meeting, which suited me fine because it’s the language I express myself best in. He ushered me into his office and my wife disappeared for some well-earned...
Got up at 07:00 on the day of my appointment. Went back to bed at 09:30, got up again at 10:15, so I was as rested as I could be. Walked to the clinic, arrived 25 minutes early, introduced myself at reception and handed in my GP referral, health insurance card, and neatly ordered copies of...
After 2,5 years of ME and 9 months of waiting for my appointment, I have finally been to the Institute for Medical Immunology at the Charite (University hospital in Berlin), where they see CFS patients in their immunodeficiency outpatients’ clinic, under the direction of Prof. MD Carmen...