An update

Earlier I wrote a blog post CALL FOR HELP, this: http://harvinaisenkauniselama.blogspot.fi/2017/09/finnish-cfsme-patients-calling-for-help.html

Now the situation is… We CFS/ME patients in Finland are treated like lunatics. I have heard of urgent invitations for psychiatric examinations, of diagnosis codes changed from neurological to psychiatric, prescriptions gone missing in the national medical database. Officials state now that the proper treatment for CFS/ME in Finland will be GET and CBT, even if these treatments are considered word wide as highly questionable. This all happening in Finland, celebrating the 100^th anniversary of independence. 

As for myself, I’m in hospital right now, as my public healthcare clinic promised to look into my condition. I have been here now two days, and only things happening are that although nurses are very friendly, I really need to look after myself. I don’t get my myasthenia gravis medication unless I specifically ask for it, and it’s a vital medical treatment, after all, for MG. My hydration levels are too low, and my kidneys are not functioning well, but nobody is interested. Usually I’m extremely well looked after in hospital, not now. It seems nobody wants to do a thing in fear of consequences. Not even basic medical care.

I was told today that the official stand of public healthcare is now that they will not support my medical treatment that I have had for 2 years and 2 months without any side effects or harm. They do admit that it’s good for me, that I need it. But they won’t prescribe the medicine for me now that my own doctor can’t. (He can’t because officials have restricted his rights, even if this is not actually legally justifiable decision.) In fear of consequences by bureaucrats. And that's a direct quote.

They admit I have so many rare illnesses that nobody knows how I react to medicines. So they are now trying to figure out or experiment how they could replace a medical treatment that is scientifically justified and used for two years with excellent results. Because of bureaucracy, the medical treatment supporting my autonomic nervous system will be closed down, and nobody knows how I’ll react. This is more like torture than proper medical care. Patients can and must be treated individually and off label treatments can be used if they are medically justified and safe, says Valvira, the bureau responsible for this. And not single one doctor in Finland dares to do so now. 

I won’t give up. I need plans B-Å now, but I’ll go through every one of them. I’ll stay in hospital for couple of days now, but I’m determined to go home and find a way to continue the one treatment helping me to cope and balance with all my conditions, among them myasthenia gravis, alpha-1-antitrypsine deficiency, Ehlers-Danlos syndrome, CFS/ME, brain injury and much more. There must be a way to find justice for me, for other Finnish CFS/ME patients, and the doctor in trouble now after trying to treat patients as humans.