Dr. Eleanor Stein's ME/CFS and Fibromyalgia Recovery Story (after 27 years!)

Dr. Eleanor Stein, MD, from Calgary, was knocked down by ME/CFS in residency in 1989. After a rough first 8 years, careful pacing, and medication, her functionality leveled off to 50 to 60% for the next two decades, yet every day was a struggle. Hear what layers coming together unlocked her healing in 2017. TIMESTAMPS below:

Note: At age 60, she recently went on an epic adventure. Not only has she supported hundreds of patients, she has worked behind the scenes for over 20 years for ME/CFS education and to change the conversation. This is my most fascinating and educational interview to date.

Transcript: https://healwithliz.com/how-dr-eleano...

TIMESTAMPS:
0:01 Intro
0:50 Purpose for sharing her story
2:18 Life before getting knocked down and onset during residency
5:10 Lack of sleep, medical training, and how it's a setup for chronic illness
8:03 It doesn't excuse doctors
8:36 Dr. Eleanor Stein's health levels during her journey
9:22 Her BIGGEST symptom
10:23 Her second biggest symptom, which shifted
11:09 Lifelong chemical sensitivities and passing out became severe daily issues
11:43 Getting on a POTS drug 8 years in (Note: She had very low BP. The drug she mentions may not be right for many people. Nothing we share is medical advice.)
12:21 Later realizing she had hypermobility. How is hypermobility related to ME/CFS. Dr. Stein explains her theory.
14:02 A list of Dr. Stein's former health challenges & symptoms and her pre-illness risk factors.
14:19 Frustration and anger. Being told THIS to her face by a doctors....and then a doctor on the CDC!
17:20 What were some things she tried to heal?
18:13 How shadowing Dr. Bev Tompkins - a pioneering ME expert - in Calgary had a profound effect on her.
19:56 Trying IVs and mitochondria supplements. Did they help?
20:37 A major symptom she forgot to mention earlier.
20:54 The powder she swore by
21:38 One marker that differentiates ME from depression
22:07 How "buffalo goo" she tried in 2008 triggered MCAS (hives, skin rash, gut sensitivities)
23:50 What diet led to her big turnaround in 2017. [She will share the other layers later.]
28:41 How she occasionally lives a little with her diet, though is strict most of the time. I talk about my journey specifically regarding chocolate.
29:51 Getting diagnosed with Lyme (through regular doctor) after severe symptoms in 2004. How she changed her mindset about Lyme.
32:22 How much did she spend on treatments. (Even in Canada, all the speciality doctors & tests are out of pocket.)
33:57 Dr. Stein shares a glimpse of all the tests she got, how most came back positive showing she had all this stuff wrong. Did any lead to any effective treatment? She had THIS to say.
35:30 Realization about ME/CFS functional treatment.
36:14 Doctors don't always tell you the side effects. Why she is more cautious, though some people with this virus are helped by antivirals.
38:12 Dr. Stein shares the history of micro-clot research and ME/CFS long before Long Covid, why she is personally hesitant about blood-thinning meds, and the history of leaky gut recognition. Fascinating stuff.
40:40 The key things that helped her heal.
42:03 The few gut supplements she takes
43:14 Taking a neuroplasticity course in 2014. What life-long symptom disappeared in the first weeks.
43:48 A paradigm shift about genetics.
44:09 Reading Norman Doidge MD's book, which mentioned red light therapy.
45:21 The red light therapy study she did in her clinic, and what were the results.
47:03 Summary of things that were helpful before things clicked into place with her 2017 diet change.
47:50 How healing is unlocked when the layers come together August-September 2017. Bob Naviaux's research on mitochondria, the CDR, and the healing cycle.
49:36 What symptoms finally went away. What she can now do! (I made a list.) What her functionality levels were. What are they today?
51:34 Her EPIC adventures!
53:08 I ask Dr. Stein about the pressure of doing all this stuff for the layers of healing, particularly if being told they'll never heal by authorities is in the back of the mind.
54:37 Unconscious beliefs How futility affects biology.
55:33 How she changed her narrative about ME/CFS recovery
57:23 We talk about how run-of-the-mill CBT and graded exercise failed most people. Writing countless letters to the editor against this. Why she doesn't do this anymore. How I had the same realization.
1:00:00 Recovery stories do not negate biomedical reality.
1:02:09 Her science-based lifestyle program and neuroplaticity program.
1:13:38 How she's changing things in Canada for ME/CFS advocacy. Free talks to educate doctors.

Dr. Stein's email: [email protected]
Dr. Stein's website: https://www.eleanorsteinmd.ca/a/21475...
Free download from Dr. Stein: https://www.eleanorsteinmd.ca/healwit...
Independent Recovery Programs Guide by Liz and Lindsay Vine: https://healwithliz.com/programs-guide/