Hi @cyclamen,
This visit to the GP is my only outing per month and I have to rest the remaining month to be able to do it again. The most absurd thing is that I'd need more doctors' letters and more diagnoses (like e.g. migraines that I'd fulfill easily) for medical retirement but I'm too sick to visit specialists. So I'm somehow not able to retire because I'm disabled because I'm too disabled to go to doctors. I managed to visit one cardiologist and he laughed about the idea that POTS exists and sent me home with the recommendation to exercise more. In addition to the physical effort to visit a doctor, it's the psychological effort too that is really draining. Always absolutely baffles me that PACE authors think we imagine the condition to get attention from doctors - doctors' visits are among the worst parts of this.
I know I have push more and try more doctors and fight for myself but I really don't have the physical strength at the moment and no one who supports this effort. Angry that I wasn't diagnosed earlier, used to have an amazing private insurance (not anymore) and lived in big cities and would have been still healthy enough to visit specialists and try treatments. By the time I was diagnosed 14 years later I was already mostly homebound.
I actually believed this was just the first visit of many and it was in my city, so nothing special. When the doctor asked if I have a question, my only question was (somehow sad and funny at the same time in hindsight to be so naiv): "Yes, when will my treatment start and how often will I have to come here?" I then was informed to my surprise that I wouldn't be allowed to come back ever. They don't treat CFS patients at the Charite.
I'm not sure about the exceptions, I think from German forums, very, very few people are allowed to come back (about once a year or so) who have severe unusual immunodeficiencies that are interesting for the Charite. And the people who are recruited for small trials (I think 10 people for the current plasmapheresis one), but they only chose people with interesting autoantibodies. So for the majority it's one visit in the Charite, one blood draw and a diagnosis in a letter 4 months later. I had doctors laugh at this letter and no one took the time to read it (several pages), so while I'm extremely grateful for the diagnosis and wouldn't know what to do without it, it's still not widely accepted (e.g. my medical insurance rejected to pay sickness benefits on the basis of the diagnosis from the Charite at first).
Again: Sorry this got so long! And I guess you know most of this anyway, but maybe the situation in other countries is also interesting for others here.
And sorry @ivorin, for getting slightly off topic. Back on your topic, Jen said in the new science friday podcast, that she tried 200 treatments (my guess is that she included the different supplements in this number too because they talked about them) and explained the difficult treatment situation - and that we need more science to match treatments to the (subgroups of) people who can be helped by them.
I agree that this might be the best option. Most people in German forums say that they try to never mention the diagnosis CFS (on the other hand, how will we manage to raise awareness with doctors this way). My problem is, that I'm not well enough to visit other doctors besides my GP. And I need to see my GP once a month to get a signature for my insurance that I'm still ill (really humiliating every time).
This visit to the GP is my only outing per month and I have to rest the remaining month to be able to do it again. The most absurd thing is that I'd need more doctors' letters and more diagnoses (like e.g. migraines that I'd fulfill easily) for medical retirement but I'm too sick to visit specialists. So I'm somehow not able to retire because I'm disabled because I'm too disabled to go to doctors. I managed to visit one cardiologist and he laughed about the idea that POTS exists and sent me home with the recommendation to exercise more. In addition to the physical effort to visit a doctor, it's the psychological effort too that is really draining. Always absolutely baffles me that PACE authors think we imagine the condition to get attention from doctors - doctors' visits are among the worst parts of this.
I know I have push more and try more doctors and fight for myself but I really don't have the physical strength at the moment and no one who supports this effort. Angry that I wasn't diagnosed earlier, used to have an amazing private insurance (not anymore) and lived in big cities and would have been still healthy enough to visit specialists and try treatments. By the time I was diagnosed 14 years later I was already mostly homebound.
I have a diagnosis from the Charite. Need to use it (via my GP) for sickness benefits and medical retirement. The only other option would be to use my prior misdiagnosis of depression - that would actually make it much easier with insurance and medical retirement. But it would also prevent any treatment and I'm generally just not willing to put up with that diagnosis anymore, had to live for years with it. In addition, there was an official statement from the German government "No, CFS isn't a problem Germany, just a handful of people retired with this diagnosis", so I want to show up in official statistics to show our numbers. And lastly, if there will be ever any treatment like ritux or cyclo in the future, I want my diagnosis officially registered to be able to get it.
That would be absolutely wonderful and I even lived in Berlin at the time I was diagnosed at the Charite. I wasn't prepared at all when I had my appointment and was a little late. Afterwards I read that other people travel there from everywhere in Germany and even neighbor countries and prepare this visit for a year.
I actually believed this was just the first visit of many and it was in my city, so nothing special. When the doctor asked if I have a question, my only question was (somehow sad and funny at the same time in hindsight to be so naiv): "Yes, when will my treatment start and how often will I have to come here?" I then was informed to my surprise that I wouldn't be allowed to come back ever. They don't treat CFS patients at the Charite.I'm not sure about the exceptions, I think from German forums, very, very few people are allowed to come back (about once a year or so) who have severe unusual immunodeficiencies that are interesting for the Charite. And the people who are recruited for small trials (I think 10 people for the current plasmapheresis one), but they only chose people with interesting autoantibodies. So for the majority it's one visit in the Charite, one blood draw and a diagnosis in a letter 4 months later. I had doctors laugh at this letter and no one took the time to read it (several pages), so while I'm extremely grateful for the diagnosis and wouldn't know what to do without it, it's still not widely accepted (e.g. my medical insurance rejected to pay sickness benefits on the basis of the diagnosis from the Charite at first).
Again: Sorry this got so long!
And I guess you know most of this anyway, but maybe the situation in other countries is also interesting for others here.And sorry @ivorin, for getting slightly off topic. Back on your topic, Jen said in the new science friday podcast, that she tried 200 treatments (my guess is that she included the different supplements in this number too because they talked about them) and explained the difficult treatment situation - and that we need more science to match treatments to the (subgroups of) people who can be helped by them.
