I'm calling for international help for Finnish CFS/ME patients.
Finnish authorities have started a chase of CFS/ME patients and doctors, and left thousands of patients without help. Before CFS/ME, this hunt was for hypotyreosis; several doctors have been silenced, and patients left without help.
Finland has no official consensus of the treatment of CFS/ME - as this illness is not accepted as an illness in Finland at all.
Now we need your help. We need official and unofficial statements of international/national CFS/ME or other patient/medical organisations etc. Especially needing a connection to EMEA and CDC.
Why am I asking this for you, personally? Because I have been shouted at, threatened and neglected by Finnish public healthcare for years because, and this is a direct quote "it's your own fault, you have too rare illnesses". I turned to the one doctor in Finland understanding my rare illnesses, and I got help. I mean HELP. Actual, real, efficient, medical help. For 4 years. Until last week, when officials decided that's it. No more treatments, as, a direct quote "these treatments could possibly be harmful", without never seeing one patient or consulting this doctor.
Because of my complicated rare illnesses, my body does not tolerate the vital medical care it needs for myasthenia gravis (for which, thank God, I get help from public health care), without this medical treatment I had. Without it, my body functions stop working. I have about 2 weeks worth of medicine left, and not one single doctor in Finland dares to write a prescription now, as they are afraid of this hunt. Officials agree, I need my treatment, but nobody takes responsibility. They are afraid of something.
We need international help now, trying to convince Finnish authorities that CFS/ME is a real illness, needing medical care (other than CBT or GET) and justice. And above all, this one doctor needs his rights back, he's internationally distinguished M.D., professor, and researcher, and has dedicated his life for helping CFS/ME patients.
If you have any ideas how to get a connection to your country's patient associations or EMEA or CDC, please send me a DM in Instagram (harvinaisenkauniselama), or comment below. Thank you!
Treatment for myasthenia gravis ie the body is lacking in acetlycholine is the opposite to ME/CFS in which the NCNED have found that the body has too much acetylcholine...
ReplyDeleteTry contacting Dr Charles Shepherd at the ME Association in England, he may be able to offer advice. Www.meassocciation.co.uk or via their Facebook page
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