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 to raise awareness for ME/CFS education and change the conversation. This is my most fascinating and educational interview to date.
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 led to her big turnaround in 2017. [She will share the other key layers later in the interview.] What is the Autoimmune Paleo Diet?
28:41 How she occasionally lives a little with her diet, though is strict most of the time. I then 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 and 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, but 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. Loving the sauna.
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. What symptom neuroplasticity didn’t help with in 2014.
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. The CDR and healing cycle.
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.
Reach Dr. Stein: [email protected]
A free download from Dr. Stein: https://www.eleanorsteinmd.ca/healwithLiz
Independent Recovery Programs Guide by Liz and Lindsay Vine: https://healwithliz.com/programs-guide/
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This was one of my most enlightening interviews. My own recovery story shares multiple similarities with hers. I also learned so much from Dr. Stein about the history of ME/CFS and ME/CFS research, and loved what she said about the healing cycle and the layers of healing. I included timestamps in the description and how to reach Dr. Stein. She is retired from medical practice, but has wonderful resources to help others heal. I hope people watching this learn stuff and are given hope. Sending lots of warm wishes this holiday season and for the new year.
Thanks Liz!
This gives me hope
Wonderful testimony ❤ Dr. Stein is so inspiring. She gives me hope.
I find it interesting that Dr Stein is selling neuroplasticity courses and talks about unconscious thinking when she demonstrated so many cognitive distortions in this talk. Even her concern about jinxing her recovery by talking positively about it shows a lack of understanding of the power of the mind body connection. Some self awareness would go a long way towards healing the remaining issues.
Love this interview! In addition to all of the insights Dr. Stein shared, I really appreciate what she said about predisposition not being the final word on illness. One of the many things that has surprised me so far in my recovery is that at some point I realized I wasn't getting many migraines anymore. I used to get them all the time and never tried to do anything about it because they run in my family so I thought I was just stuck with them, but it seems that the work I'm doing to recover from ME has inadvertently reduced my migraines dramatically. It's amazing what can happen when you have the tools and resources you need to take good care of your body.
Thank you for sharing your experience and giving us hope. Where can I get the list of vegetables diet and meat please?
On the adrenals, in addition to HPA axis issues, a 1999 study showed ME patients had adrenal glands that have shrunk by 50%. That might cause lowered output also. (Study is called 'smaller adrenal glands in chronic fatigue syndrome' Scott et al.
Anyway, this is a great interview and I really appreciated hearing Stein's story. I had thought from a previous interview that she was a pure carnivore though rather than AIP.