A series of articles was recently posted on the Research 1st website (a highly recommended source for the latest news in ME/CFS research) that prompted me to tell you a bit of what I know about an exciting new way to help even severely disabled ME/CFS patients.
Dr. Peter Rowe, a well-respected pediatric CFS/OI expert at Johns Hopkins, has developed (along with local physical therapists) a new manual physical therapy process. You can read about it in these two articles: Part 1 and Part 2 .
To be clear, this is NOT Graded Exercise Therapy. The manual therapy starts with the patient in an entirely passive role, lying down, and the therapist very gently moving the patient's limbs and other body parts. It can be done on severely disabled patients and is extremely slow and gentle, with a goal of reducing sensitivity in the nervous system and avoiding any post-exertional consequences.
We have seen the success of these techniques up close. A good friend of ours, a 16-year old girl, went from bed-ridden to attending school full-time, thanks to this manual therapy and beta blockers . Before treatment, she was in constant pain, and now she is not only mostly pain-free and going to school every day but also able to exercise - riding her bike like any normal teen! The difference is absolutely amazing.
The best part is that you don't have to wait for this treatment to become available. Dr. Rowe will review the process and how to go about it with your physical therapist over the phone - he has done this for many of our local CFS patients already. Also, read the comments section at the end of the Part 2 article , where there is guidance on finding a qualified PT who is trained in these methods.