Dr. Martina Melzer, published: 06/27/2023
Summer 2018: Florian Schießl, a project and change manager, developed two viral infections in succession. After the second one, he is "just laid up," as he
says. He has goten fatigue, brainfog, a constant flu-like feeling and many other symptoms. After nine months, he gets a diagnosis of ME/CFS. He comments, "I would have rather had colon cancer than ME/CFS." He became bedridden. Other diagnoses include the metabolic disorder HPU/KPU and leaky gut syndrome.
In the video interview on YouTube, Florian talks in an impressively open way about his worst times with ME/CFS and his road to extensive recovery (German). To watch with English subtitle please go to the settings button, activate the subtitle in your language, go back to it, choose "automatic translation" and then choose your language.
Key points about recovery from the video:
- Pacing: the first thing Florian did that helped him a lot was pacing. He even got the nickname "Pacing Pope" from other people with ME/CFS. His goal was to use it to avoid crashes, which he succeeded in doing over time. A sophisticated Excel spreadsheet to log his own condition and healing methods and a sports watch assisted him.
- He found meditation and mindfulness helpful.
- Mindset/Psyche/Emotions: He inoculated himself with a positive mindset, as he puts it, "so I don't die," which was an essential component of his recovery journey. Not giving up hope and insulating himself from the (naturally understandable) negativity in the ME/CFS community was also important. He was also helped by cognitive behavioral therapy and dealt with personality traits that hinder pacing, such as perfectionism, helper syndrome, and achievement thinking.
- The drug low-dose naltrexone (LDN): He took the prescription drug LDN, which had significant side effects but got him "off the bed and onto the balcony couch" and made him "marginally able to communicate," which had not been possible before. Florian no longer takes LDN.
- The drug Low-dose Abilify (LDA): via Instagram, he found that the prescription drug Abilify (active ingredient: aripiprazole) helped some people with ME/CFS improve their condition. So he tested the drug in consultation with a doctor - as a guinea pig, as he himself says. With success: "Abilify got me out of bed and onto an e-bike," says Florian. He also talks about side effects, that this drug should not be underestimated and that it carries risks. For example, he says, it increases drive, which is why some people then did too much too fast and crashed again. Florian is in the process of dropping off LDA.
- Florian moderates a Facebook group on Abilify for ME/CFS, where group members have experienced improvement in 50 percent of cases, according to internal statistics.
Facebook group (German): https://www.facebook.com/groups/2433702210269370/
- Stanford University study: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02721-9
- Note from me about LDN and LDA: Both drugs are not approved for the therapy of ME/CFS, therefore the use is "off label". Both drugs, like all drugs, can have side effects. I am only aware of the Stanford University study of Abilify in ME/CFS so far. So more studies with more participants are definitely needed, plus those with a comparison group receiving a placebo. If you are considering taking such a drug, inform yourself thoroughly beforehand and discuss the advantages and disadvantages with a doctor!
- Polyvagal Theory Therapy: With a therapist trained in polyvagal theory, he learned how to restore balance between the sympathetic and parasympathetic nervous systems.
- Learn more about the autonomic nervous system here: https://www.ich-werde-gesund.com/2023/04/25/how-stress-and-trauma-change-the-brain-and-nervous-system/
- Social support from family and friends, a medical certificate for being unable to work and disability played an important role. This gave him the time to focus on his recovery.
- Not mentioned in the video: Florian did the Gupta program and read the book "CFS Unraveled" by Dan Neuffer and found both helpful.
Florian's message: Don't let it get you down. Keep going, try new things, recovery is possible.
This is how you find Florian Schießl:
Website (German): https://cfsistkeineidylle.me/
Instagram (German): https://www.instagram.com/me_vs_meandcfs/
Pacing article (German): https://cfsistkeineidylle.me/tag/pacing/
Translated with the helpf of DeepL
Also, the content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. Please talk to your doctor or therapist before making any decisions about your physical or mental health. Every way into a mind-body syndrome is something individual, and every way out.