When I prompted inquiry on a subreddit for chronic fatigue syndrome patients, I asked their experience with DOs and osteopathic manipulation in the treatment of their symptoms. Here are some responses:
“I’m working with an integrative medicine MD, and we are focusing on small changes that, taken together, can improve my daily function. It’s very much a process of trial and error. I’m taking some supplements with mixed results. I have seen a difference with liothyronine (T3), propranolol (for my POTS symptoms), and low dose naltrexone (LDN). I would highly recommend looking at the Bateman Horne Center. They have lots of resources for medical providers including YouTube videos. I work in healthcare, but not an MD, and I really like their info.
But when I saw traditional doctors and specialists, they would just say there was nothing they can do and send me away. I think the best thing you can do for your patients is be honest. That might look like letting them know you can’t cure them, but you can work with them on symptoms or small improvements. Or it might look like finding someone who specializes in ME/CFS and making referrals. We will always be more complex than an average patient, so we often get treated like pariahs. Just a little understanding and being validated/believed goes a long way. It would have been very helpful when I was first diagnosed to have someone sit down with me to make a basic plan. When do I contact the provider? When do I go to the ER? When should I start thinking about diet? How do you start pacing? It was completely overwhelming at first, and I didn’t know where to start.
Just the fact that you are here asking is a great sign for your patients. Thanks!”
“I have a DO who works on my body and she’s the single greatest thing for pain management I’ve ever found.
She’s also CFS literate. And I genuinely appreciate getting to pick her brain about medical stuff each week as I’m laying on the table. She challenges my assumptions, points out things to research, helps me pick the most viable paths forward (when 5 doctors each insist that you do their damn protocol, what do you pick?).
It’s also been a huge help in educating me to correlate what I’m experiencing physically with what she feels in me. Eg, I now know what sympathetic tone feels like.”
“I have an awesome DO who does only manipulation. He is very helpful in gauging my energy levels and tuning whatever parts of my system are functioning poorly or out of alignment. He has only “cracked” me twice that I remember, and I’ve been seeing him for over 10 years. I have never been harmed or set back by what he does.”
“I’m biased toward the mindset and values of DOs but a brief visit to one, who did a pretty gentle manipulation of the shoulder area left me bedridden for two months with loss of use of my hands (due to what seemed possible nerve damage in the shoulder blade area) and a new, further disabling dx of IST. So it’s fair to say I deeply regret that visit.
Regardless the letters after your name, a compassionate doctor who actually believes in me/CFS is a great blessing and a rare find. Fwiw, my own gains over time have been from nutrient / mineral protocols and more recently rapamycin (still early trials but hints of potential big gains). Your patients are lucky to have someone who cares enough to ask the questions!”
If you or anyone you know and love have more perspective on this topic, please feel free to leave a WordPress comment, email myself (email@example.com), or write your story on the r/psychedelicosteopathy subreddit (https://www.reddit.com/r/psychedelicosteopathy/).