I went into a deep depression from the dx of CS from Mayo and not knowing what ME/SEID/CFS was and from the GI MD nearly yelling at me to move on with life (before I got my dx’s). Still strongly disagree with the CS after reading that article you posted. It is definitely appropriate for the pain/FM group, I don’t have those, just ME/SEID.
So during that deep depression I had to figure out how to get better. So I started researching and learning more about ME bc the stigma is that it is psychosomatic. It is NOT! It is a complex, serious, systemic disease that if not treated properly (that is, if your MD says graded exercise and CBT then they are not up on the research! That will cause severe worsening of condition and can leave you bedridden/bound).
I also have other rare dx’s and a moderator in my vestibular FB group recommended the Norman Doidge books. I was still very fragile and self, um, word finding issue... I was still angry and in denial and not knowing what was going on. So I read those 2 books and they gave me hope that I can heal with all my diseases/dx’s!
I loved them! I am a healthcare professional so I didn’t have trouble getting through them. Highly recommend!! They changed my life and they changed the way I treat my patients as well. I’ve incorporated some of the techniques into my treatments.
I also learned energy conservation techniques (still learning how to save my ‘spoons’!), how to meditate and worked on my breathing. Got plenty of healing sunlight (refer to chapter 4 in Doidge second book), green therapy, and started speech therapy and continued PT. All helped. Learned how to balance the exercises that I have to do to function, but to not ‘exercise’ like a regular person anymore. Added cognitive exercises for the cognitive decline/impairments I have had worsen this year.