Expectations
I’ve talked with people who say, “Jeff, you’ve had a complete remission from ME! So I just need to get neurosurgery, and I’ll be cured, too.”
Maybe, but not necessarily. There are many factors to consider. When making a decision to pursue any treatment, it’s a good idea to be, well, a hardcore realist.
Over the last several years, many people with ME have started pursuing mechanical treatments. Many have improved. Some have gone into full remission. But some have not improved, and things can sometimes go wrong.
This condition is complex. Not everyone will have the same experience or outcome. Some factors that influence outcomes can be:
The training and technique of your neurosurgeon or your regenerative medicine doctor.
Your ability to access follow up treatment.
Your financial resources.
Your support system.
The interesting quirks of your very own body.
. . . And many others!
I’ve found the best doctors are the ones who refuse to promise you “The Cure.” They will not try to sell you on a procedure. They will also share with you a list of potential risks as well as benefits.
Keep in mind that many people have more than one mechanical issue that needs to be addressed. As one example of many, I had craniocervical instability (CCI) as well as a tethered spinal cord. Also, I have experienced ongoing issues with my cervical ligaments beneath my fusion. This has not led to my becoming ill again, but it has required ongoing effort and upkeep. Regenerative medicine has been essential for maintaining the ligaments beneath my fusion.
So I just want to prepare you, early in your discovery process, for this reality: Surgeries and regenerative medicine treatments alone might not immediately solve everything.
Recovery is an ongoing and dynamic process.
My fusion in January of 2018, and my tethered cord surgery in July of 2018, took away all my ME symptoms, yes. But having been ill for so long, regaining my strength and endurance has taken the last several years! I am now able to walk three miles every night. I also do strength training nearly every day, and I work out in the pool twice a week. I live a full and active life.
There is reason for hope. Many of us are working to expand research and access to effective treatments. But please keep a spirit of genuine realism, along with your hope. Realism will protect you along your journey, whatever your own journey might turn out to be.
Jeff Wood is a consultant to chronically ill patients as well as to researchers and MDs who serve this community. He began this work after successfully solving his own case of ME/CFS and building a new model of the disease. Jeff lives in California and works with people from all over the world, thus far from: Germany, France, the Netherlands, India, Australia, Japan, Slovenia, Switzerland, Ecuador, Romania, Pakistan, Mexico, the United Kingdom, Morocco, Canada, and every geographical region of the United States.
David Kaufman, MD — internist and ME/CFS specialist — said to Jeff:
“If I were ill, I would want you on my team for sure.”
A severely and chronically ill mother of three said:
"I feel such a relief...because I have Jeff, who is helping me with my medical / health problems as an advocate- and I cannot tell you how I went from total despair, to feeling hopeful!
I am so thankful, because I do not have the ability to analyze the situation and make plans to tackle all the never-ending obstacles to receiving the medical care I need.
Jeff has helped me so much with my medical care, advocating for me — and helping me advocate for myself. He is always there to help me sort out these incredibly complicated, nuanced, intricate issues...and we have a solid plan I feel so comfortable with."
Paolo Bolognese, MD — specialist neurosurgeon — said about Jeff’s work:
“Exchange notes with Jeff Wood. I know these symptoms from the outside. He knows them from the inside. He is one of the most introspective patients I have ever met. And so far, he is batting 1,000…”
Whitney Dafoe said about Jeff:
"Jeff is a really sincere, good, kind man. That’s basically all I wanted to say from someone who has met him in person. He’s extremely empathetic and intelligent. It doesn’t surprise me that he figured out so much on his own."
