1. “Good practise” guidelines for ME/CFS
The Finnish Medical Society Duodecim published in November a draft for new guidelines for ME/CFS for open consultation. The deadline was 4.12 and the final Hyvä käytäntö / Good practise guidelines will be published beginning of 2021.
The timing was good as the historic NICE guidelines for ME/CFS (draft) were published in time to be taken into consideration. NICE takes a drastic turn from psychosocial model to biomedical approach and no longer lists GET (graded exercise therapy) and CBT (cognitive behavioral therapy) as treatments for ME/CFS.
The Finnish draft for new guidelines for ME/CFS proposes diagnostic criterias that include PEM, which is an important step forward in Finland, where the definitions of ME/CFS are very vague and confusing among the healthcare professionals at the moment. There are still mentions of GET and CBT as treatments in the draft though. Finnish ME-patients wish that the final guidelines will take into consideration the research reviews the new NICE guidelines are based on.
2. Helsinki University Hospital`s Outpatient Clinic for Functional Disorders treats ME/CFS patients
The Finnish Ministry of Social Affairs and Health defines officially ME/CFS as a “functional disorder” and the Helsinki University Hospital treats it as one at their year-old Outpatient Clinic for Functional Disorders.
ME/CFS patients have started to share publicly their experiences of the treatments Functional Disorder Clinic offers to them.
Woman, 36 years old ME patient:
“I only got pressured from the clinic to believe that my symptoms were “functional” and shouldn’t be studied no longer, as it would only make my symptoms worse. I was also suggested to start a DNRS brain exercise program.”
Woman, 39 years old ME patient:
“I was recommended at the clinic to get acquainted with the DNRS method, which means retraining the brain. The Gupta and Lightning process were also recommended. These are all commercial programs that you can attend at your own expense. These programs are not based to any medical evidence.”
Woman, healthcare professional, ME patient:
“In their view, ME / CFS is just a matter of a dysfunction in autonomic nervous system and can be corrected with psychophysical physiotherapy and a gradual increase in exercise. I told about physical findings in me, found in medical studies, but they were completely ignored. For example, the changes found in my brain were offset by the “fact” that we are all different and so is our brain, so they think the physical findings are thus useless.”
The Functional Disorder Clinic is offering also an online therapy course to treat ME/CFS, the course is developed by Kela, The Social Institution of Finland.
Woman, 45 years old, Psychologist and ME patient went through the whole online therapy course and describes her experiences:
“The course emphasized the need to commit to exercises and asked constantly how motivated I was to do them and go through the course. This is a classic form of manipulation, the same is used in different cults and revival movements. If you want to heal, do as they say. In the beginning there is pressure to act, and if a person doesn’t get better, he’s guilty of not trying hard enough. It’s also unethical to give us unveiled hope of healing because we know that you can`t cure ME by thinking – otherwise I’d be healthy already.”
3. The Finnish Parliament
During the autumn several members of the Parliament have submitted written questions to the Government about the issues ME-patients face in Finland.
Member of the Parliament, Timo Heinonen (National Coalition Party) has submitted a written question to the Minister of Family Affairs and Social Services, Krista Kiuru:
“Why does the Government define ME/CFS as a functional disorder and not as a neurological disease following the WHO classifications?”
Till this day Minister Kiuru hasn`t been able to give an answer, but instead she has released avoidant statements. MP Heinonen has repeated the written question already two times and has promised Finnish ME patients to submit the same question again for the third time.