The “What’s Up Doc?” series asks doctors what has caught their attention recently
The “What’s Up Doc?” series is a series dedicated to exploring what’s catching the eyes and ears of ME/CFS/FM and allied disorders doctors. What are they exploring? What new treatments approaches or research avenues are they checking out? It could be an established field that they just haven’t really embraced up until now. This series is not about established treatment protocols. – far from it.
Have a doctor you would like to hear from? Let us know.
Dr. Eleanor Stein
Thanks to Dr. Eleanor Stein for being the first (and hopefully not the last) ME/CFS/FM expert to kick off the series. In the interview Dr. Stein, an MD who has had ME/CFS/FM and environmental illness, talks about her long, long and until recently mostly fruitless hunt for better health, what she found that works for her and her explorations in neuroplasticity and what she believes it can and cannot do.
Dr. Eleanor Stein MD came down with ME/CFS/FM and environmental illnesses (EI) in 1989. Since then she’s worked with over 1,000 patients. She’s a Clinical Assistant Professor at the University of Calgary and is a steering committee member of the new Canadian Research Network (ICanCME). She’s also the founder of the ETeam, “the only multidisciplinary team in Canada offering objective assessment of cognitive, exercise and sensory function in people with ME/CFS, FM, and ES (environmental sensitivities)”.
Thanks to Dr. Stein for being the first to participate in the “What’s Up Doc” series.
Dr. Stein has won several awards including the Florence Nightingale award from the Edmonton ME Society and the John MacLennan Award of the Canadian Society for Environmental Medicine. She was one of the signatories of the Open letter to the Lancet urging a fully independent review of the PACE trial and An open letter to Psychological Medicine about “recovery” and the PACE trial[7]
Most recently Dr. Stein’s online “Pathways to Improvement” courses provide a multidisciplinary approach to understanding and treating these diseases.
They provide a rare chance for patients to interact not only with an ME/CFS/FM and EI expert but a doctor who has walked in their shoes, and who has tried just about every therapeutic approach possible.
A 10/20% off coupon “Cort10” (June/May classes) is available for those who want to enroll in the May or June Pathways To Improvement’s classes. (Today is the last day to register in the course starting in May. One session – which you can review – has already occurred.)
Now to the first edition of the “What’s Up Doc?” series with Dr. Eleanor Stein. (Thanks to Dr. Stein, Michael Finch and Scott Becker for their help with the video.)
i’m not sure if it’s possible with the video set up you are using but captioning would be necessary for me to be able to access it. It’s a great idea though.
Many thanks for your determination to prepare this video, despite the challenges! ? It was so informative, I don’t know how you kept engaged, mentally so long!
Thanks Rose,
We were both exhausted by the end of it. 🙂
Beyond my capabilities for now at least Sue. Thanks for the idea, though.
The mind body connection is real! once I began deep meditation, going into my mind and body to begin rewiring my brain things have improved significantly. Dr. Joe Dispenza has in person but online info called “Rewired” it is so informative, I use the Gaia website for guided meditation. It works, it takes discipline and time but definitely helps daily with my CFS. You can also just do it yourself, take 10 minutes for yourself to be still. It gets me out of bed in the morning. if you have 20-45 minutes before sleep and first thing in the morning. If you have more time of course its better but start somewhere! I went from “walking in quicksand” and feeling paralyzed along with severe brain fog to being functional. You still need to understand your energy envelope but so much better than before. I found myself inside my body and realized the mind body connection. I can feel the difference when I am connected. It just takes time and patience. By the way I am a single working mom with a very type A personality. This illness has stopped me in my tracks. I am getting my life back to some degree. I take what I can get.
Thanks for sharing and congratulations Joytika. Good luck on your continuing search to get better.
Thank you Cort and Dr. Stein for a great interview! To add to your discussion about neuroplasticity, there is some research from Harvard that shows that Self Compassion practice changes the brain, reducing pain and activation of the amygdala, while improving the function of the prefrontal cortex. I am hoping that this practice, as well as mindfulness meditation will continue to calm the sympathetic response and train the brain to engage the parasympathetic response that promotes healing.
I appreciate the video very much. The gentleman needs to try not to say ah, ah, ah so much.
He will try 🙂
? @Cort!
I assume Cort is struggling with brain fog and other cognitive issues associated ME/CFS
Many thanks for your determination to prepare this video, despite the challenges! ?
He sure is! (lol)
I get tired of people who run on, but I honestly did not feel that here. I thought it was a good interview.
Thank you Cort, all your efforts to help those of us in the community are much appreciated.
This first video interview in the “What’s up Doc” series was brilliant.
I’ve managed another small donation to help you in your invaluable work and hope others can too.
Cheers from Australia,
Gail
Thanks Gail! 🙂
Cort Johnson interviewing Dr. Eleanor Stein–this is the interview I’ve always wanted to hear. Thank you two for the great questions, spot on follow-ups, and insightful and transparent answers!
Thanks to someone who’s a pioneer in this area himself 🙂
Hi Cort, Interesting lecture. I listened to you make a comment about giardia- are you saying you never got back to baseline after that? I’ve been listening to free lectures by klinghart. He says we all need a liver cleanse and a parasite cleanse every year but esp with diseases like me/cfs-& it needs to be done full barrels-alot of it can be natural, but then if you have a chronic disease after the naturals you have to take some heavy duty meds. He says this layer must be dealt with if u have a chronic viral condition or cancer & mentioned some other disorders. I plan on trying this if i can & will let u know if it is a game changer or not.
Actually it was a friend of mine. I did have a Giardia infection a couple of years before I got ill, though. Thanks for passing this on and good luck!
check out giardia and lactose intolerance…
interested also about the giardia – my spouse and I both contracted
Also the lyme community thinks parasites could have some contributing factors
We have a couple of blogs on Giardia and ME/CFS. The connection has actually been well documented by several studies that followed an outbreak in Norway or Sweden I think it was.
https://www.healthrising.org/blog/2017/07/06/even-minor-infections-can-cause-chronic-fatigue-syndrome-mecfs/
https://www.healthrising.org/blog/2014/05/22/mono-giardia-orthostatic-intolerance-chronic-fatigue-syndrome-visit-dr-cheney-1/
Hi Cort. That was a really great and informative interview. I need to watch it again and take better notes. I wasn’t really very clear about exactly what Dr. Stein did to be able to take a two hour bike ride! That would be like heaven to be able to do that! And I think it is wonderful she is able to do so. Did I miss something, or is it all a result of her dedication to these neuroplasticty techniques she has been practicing for years? Thanks for any clarification – I look forward to the next one of these you have.
I believe it was the DNRS program. It immediately worked for her chemical sensitivities but it took much longer for her energy levels. I think the group she formed – all of whom had more early progress with the DNRS – was crucial in having her keep up with it for so long.
PLEASE what does DNRS mean
Sorry! Dynamic Neural Retraining System by Annie Hopper – a DVD based course first developed for people with chemical sensitivities. Some people with ME/CFS are also finding it helpful.
Hi Cort,
Dr. Stein mentioned that she tried both, Gupta and DNRS. I did not hear her specify that it was DNRS that helped her. Did she tell you, in a separate conversation, that DNRS helped more than Gupta?
In my previous comment I was asking which program helped Dr. Stein with her MCS, specifically
As I remember she likes both programs and it was the DNRS that her group was doing. I don’t know if she’s actually done Gupta.
OK. Thank you Cort.
Great interview Cort! Learned a lot. Dr Stein and you are a wealth of information. Looking forward to your next What’s up Doc session. Thank you!
Hi Cort, thx for all your work you do for our terrible disease. Is professor Scheibenbogen an idea for ‘What’s up doc’.
Very interesting the piece about the autonomic nervous system. Is it primary or secondary? For me, this remains the $ 1 million question for a subgroup:-)
Yes! Please try to get Carmen Scheibenbogen, Cort!!
Great idea! 🙂
tks for a very interesting session. some useful information and lots of areas to research. Based in Ireland and diagnosed some 35yrs with ME, no treatment in all those yrs. Only advice I had when diagnosed was ” decide what you want to do, half the idea and then half again”, I suppose this was pacing!
looking forward to the next sessions of “what’s up Doc”
Thank you Dr Stein and Cort that was a very interesting video. It has motivated me to keep doing neuroplastic techniques. I particularly liked her points that to shift our neurones we need to be not too wired or too sleepy, we must pay attention to get acetylcholine working, and why to keep a diary of positive improvements is to get the dopamine released to keep motivating us. I think her talk also helps explain why the Alpha-Stim microcurrent device helps me so much. It calms my wired feeling as the alpha-waves promote the calm and alert state without taking my energy away as other techniques to get to this state can do. Also the Alpha-Stim gives me more energy by increasing my time in deep sleep.
Linda, I’m interested in your comment about alphastim as I’ve thought of trying it myself. I’ve tried other things that haven’t worked including electric stimulation of the vagus nerve via the ear, touchpoints, and audio e.g binaural beats. Have you tried anything else and did it work for you? I’m desperate to be able to better relax but cautious about forking out for something else.
It isn’t free, but it’s cheap and does the trick for me: the “bed of nails” resting on my belly. See https://www.healthrising.org/forums/threads/a-bed-of-nails-for-better-sleep-acupressure-mats-fibromyalgia-and-chronic-fatigue-syndrome.5221/ , last comment made by me.
It sure won’t work for everybody, but they can be gotten cheap.
Hi Silvia, Here in the UK there are practitioners hiring out the Alpha-Stim M or AID to try before you buy. Some sellers also offer a 60 day trial. I find it helps about 70% of those who try the ear-clips, the ear-clips is the most important part for us. The key is we must use it at a comfortable level and for many of us with CFS and FM we need to start with water not conducting solution to lower the current further. Most of us can cope with level 1 or 2 on the intensity setting. Though some very sensitive people need to use water on the 0.5 level. I still use mine 12 years on, at level 1 and it still works as it has a variable current that you don’t build up a tolerance to. I suggest people start just one session (usually an hour) a day for the first week, and sometimes that is enough. Some need to use it in the morning as they can feel very alert when they use it, the gentle alpha-waves produced are the calm and alert feelings. By using it during the day this encourages our alpha-wave intrusion that we can get at night to stay in the day and encourages more delta waves at night. Some people like my son who had severe insomnia find the ear-clips help them go to sleep as it helps them stop worrying. Occasionally some feel calming feelings straight away, though most people need to trial the device daily for at least 4 weeks to test it. Look for small signs of deeper sleep, less wired, less pain, better concentration and/or more energy. I started to notice these after 2 weeks and continued to improve slowly over 9 months. Sometimes you can get side-effects of a headache and this usually goes in the first week, it is due to muscles relaxing at different speeds in the neck. The Alpha-Stim probes from the Alpha-Stim M and gentle exercises and GENTLE trigger point release techniques can help ease this. Others get odd side-effects and this isn’t the Alpha-Stim but from medication, in this case this is a sign that the medication can be reduced slowly under the supervision of your doctor. Some people can go more sleepy initially when they start this is just the body starting to catch up with much needed deep sleep.
This was eye-opening for me “we need to be not too wired or too sleepy, “. I never thought of that before but it makes sense.
Thanks for the reminder about looking into the alpha-stim.
Thanks dejurgen for the suggestion. I looked into acupuncture mats a few months ago, but didn’t go for it: seemed too wacky/painful! You’re right though, having failed with other options, worth a try before splashing out on an alpha-stim. And I liked your suggestion of an alternative way to use the mat.
Has anyone tried vitual reality (although another pricey option)? Recently there was a podcast about using it in depression (BBC Sounds https://genome.ch.bbc.co.uk/explorer/m000w6m0). But the company (Rescape https://www.rescape.health/) seems to be developing systems and programs for stress and anxiety. As someone who is virtually housebound it sounds a great way to have a novel experience whilst also calming the nervous system.
Hi Cort, I hope the above reply to Silvia is helpful for you. I didn’t want to give out my website as I’m planning to retire soon.
Many thanks Linda for your detailed advice on using the alpha-stim. 70% positive is very promising.
I read the link on the visit to Dr. Paul Cheney in Cort’s response on giardia. I was Dr. Cheney’s patient for most of 20 years. Actually, I did well on his treatments even though they seemed unusual. The cell signaling factors, especially, kept me going. The MTF is like stem cells in a bottle and I only use these when I really feel bad because they will exhaust you for a day or two. Under Dr. Cheney’s treatment I was able to travel all over the world; learn to play golf and run a national nonprofit. This is not to say I didn’t have bad days or weeks when I stubbornly over-did-it. I was also on .5 mg. of Klonopin over the years. Klonopin, among other things, is a mast cell stabilizer. The problem with this drug is that many doctors won’t prescribe it because of its potential for addiction. Although I never needed an increase in the .5 mg., I decided to wean myself off over a period of months and now I only take a quarter of a .5 mg. tablet. I have not felt as well since I did this, but I have not been able to see Dr. Cheney since the pandemic because the nonprofit I run has been struggling financially. I correspond with Dr. Cheney on occasion about new CFS research and as long as I don’t ask about my own treatment, he usually responds. I am surprised by the comment that Dr. C wouldn’t work with a local doctor. In my case, my local doctor who was on the antiviral bandwagon, refused to work with Dr. C. (The antivirals made me much worse and dizzy so I experienced several falls and broke some bones.) I believe Dr. Cheney knows more about the original outbreaks of CFS than anyone and he has dedicated his life to studying the potential cause(s) and treatment. A lot of cases have been swept into the CFS basket that probably are something else so it is not surprising that his protocols don’t work for everyone. It is unfortunate that insurance and Medicare won’t cover most CFS diagnostics and treatments. Yet, they will cover toxic drugs and complex surgeries. No one complains when a surgeon charges $75,000 for an operation.
Isn’tt that something. I tried Dr. Cheney’s protocol and unfortunately it didn’t make even the smallest dent. I only saw him for a year and half before I ran out of money (lol). Good to hear about a success story. He was “the guy” to see for quite a while. A very creative doctor.
Thank you for doing this, Cort! I had heard about Dr. Stein and her program but no one could tell me what it was without buying it.
From what I’m understanding, Dr. Stein didn’t have ME/CFS, but had some genetic problem causing multiple chemical sensitivity and impaired ability to deal with oxidative stress. And she may have had Lyme, which may have responded to an unspecified Lyme treatment. And a genetic version of orthostatic intolerance, which she still has. And food allergies, which she still has.
She says she went to several ME/CFS doctors, and she tried many well known ME/CFS treatments but none cured her. (Sounds like she didn’t have ME/CFS??)
Her program didn’t cure her either. This treatment regime involved retraining the nervous system so one is not as reactive to chemicals and neural stimuli. It doesn’t get rid of any problems. Just helps people cope better with the problems they have.
And, it’s best if one buys her program and does it in a group, because one needs peer support for this treatment that may not show results for 3.5 years.
She sounds devoted to her cause. I’m not sure I have that much patience. I understand that many of us see multiple doctors with varying degrees of success, but it seems to me that good diagnostics, identifying and prioritizing problems to treat and carefully treating them in a thoughtful order can yield success, without blaming the patient for bad thinking patterns… Call these modern diagnostics may not have existed 30 years ago, but a lot has come online that is helpful and useful today.
Gotta push back a little on this. There’s this idea that if someone gets better using techniques like this they didn’t really have ME/CFS. I disagree.
Dr. Stein had PEM, could only work part-time at best, had orthostatic intolerance – she met the criteria; so that, whatever helped, in my book she had (and still has) ME/CFS at least as we know it now.
High levels of oxidative stress are about the most consistent research finding in ME/CFS. I had a distant relative with severe MCS. No reason to put her in a different basket because of those things.
She didn’t go to several ME/CFS doctors – it appears that she went to everyone she could think of but not being cured or really helped by them is not uncommon. No treatment program has made much of a difference for me over the decades. I imagine not being cured is the most common outcome for just about everyone.
I agree that it really is very helpful to do these programs in a group but note that the other members of her group progressed much more rapidly than she did – so it doesn’t necessarily take that long.
Still, she had amazing patience and perseverance. I agree that few of us have that degree of perseverance. Thankfully it worked for her. I haven’t had the same luck.
“Good diagnostics, identifying and prioritizing problems to treat and carefully treating them in a thoughtful order can yield success” – absolutely they can. Health Rising has all sorts of different recovery stories on its website. Would that they happened more frequently.
There’s obviously so much more to learn about these diseases. In the end they are still big mysteries. Hopefully we will learn a lot more over the next couple of years.
Thanks for this new venue for doctors to present their own views on ME/CFS. Great idea, Cort!
Now, as I was listening to Dr. Stein, I couldn’t help but wonder if she is not on the Ehlers-Danlos spectrum. She never mentioned it once, but some of her symptoms and also her body size is giving me clues…
People in both camps, EDS and ME/CFS seem to view their problems from their ‘home camp.’ I started out in the EDS camp but then switched to ME/CFS as it addressed my most pressing symptom–lack of energy. Each camp has a slightly different vantage point on the ‘whys’ of their issues, but often the treatment protocols are similar. (By the way, that ‘tired but wired’ feeling is so very common in EDS!).
Synchronistically, a copy of my sleep study arrived just as I was listening to the interview. I have a whopping 22 arousals (not counting menopausal night sweats) and almost no deep sleep. No wonder I’m tired!
The theory is that because of my floppy tissues (thank you EDS), parts of my airway collapse just enough to drop my oxygen so my body wakes itself. It is not apnea therefore insurance will not pay for a C-PAP which is the recommended method of treatment–and not even guaranteed to be effective.
Stanford’s Chronic Fatigue clinic estimates that some very large number of their patients have EDS, and Dr. Bonilla’s assistant, NP Kandan, wanted to begin an offshoot for them. But it was a ‘no go.’ I haven’t been in a while since nothing they did was very helpful for me–but maybe now I have some results to work with.
Apart from neuroplasticity, low and slow P.T. is the most helpful for EDS pain and function. Unfortunately exercise is also very hard to do when energy is lacking. For my collapsing airway, I am trying a treatment alternative–learning to play the didgeridoo–which reportedly can strengthen the upper airway. Meanwhile I will be saving some money to purchase a C-PAP with all the accouterments.
I am mentioning this sleep saga again because somehow, despite all my trials, treatments and visits to M.D.’s, this fell through the cracks. I don’t want it to fall through the cracks for my ME/CFS compadres…So many people think their sleep is ‘just fine’…But until they get tested…
Hello Nancy B.
I’m puzzled as to why your ‘22 arousals’ are not considered apnea events. In my humble opinion, these are CLASSIC apnea events which warrant the use of C-PAP.
I’ve been using CPAP for close to a year and find it helpful – but not quite curative. Time for a second opinion??
Hi Back Neal,
Sleep specialists differentiate between hypopneas and apneas. Hypopneas are arousals BEFORE a person stops breathing. Oxygen levels drop and the body recognizes this and ‘wakes’ itself up to take a breath.
In apneas, the body (usually) does not wake itself and so people can stop breathing for periods of time before another breath arrives.
When I say ‘arousals’, that can mean their sleep architecture is disturbed and they can go from a deeper level of sleep to a very light level without necessarily becoming fully awake. It makes the sleep study architecture graph look like a bunch of spikes rather than the step-like pattern of normal sleep cycles.
There are charts which show that people’s breathing quality during sleep can range from normal to light snoring to hypopneas to apneas–so think of a hypopnea as being ‘on the road towards apnea’–just not quite there yet.
This might seem like an unimportant distinction since the resulting consequences are similar–but the insurance companies (in my case, Medicare) don’t see it that way. There is an ongoing debate about this distinction, but so far I think that insurance is just giving another reason not to pay.
As for your comment ‘not quite curative’–I do wonder about that because I have distinct PEM. I’m not sure how much treating my upper airway resistance will help with that–but I’m hopeful.
@Nancy B
Hello again Nancy. Sorry about my vague comment about CPAP not being quite curative. Not very informative. And thanks for your info regarding hypopnia.
I got to using a CPAP machine after noticing that during a midday nap, lying supine, I would wake up snorting for breath every 5 or10 minutes. A sleep test revealed I was having 12 apnea events per hour (a moderate number).
Before starting with CPAP, I would wake up with what felt like heart muscle pain from the nightly apnea events. If I got a good nights sleep, with apnea events now under two per hour, my heart pain would be gone.
My PEM however hasn’t improved. If I could sleep on my side throughout the night as opposed to on my back (a lousy position for those with apnea) I bet I would feel much better. Easier said than done.
We all have different health issues which makes this a tricky business. Best of luck to you and to all.
Wow. Nancy 21 sleep arousals – not mentioning night sweats – how could anyone be healthy with that going on? We have a blog on PT coming up – it was really illuminating to learn about the different kinds.
I love your hack for your collapsing airway…the didgeridoo :). Good luck with that.
Hi Nancy — After being sick with mecfs for 23 years, I had got to the border of severe – mostly chair-bound, needing a stick to walk around the house, motor control problems, awful noise sensitivity, couldn’t think straight for more than 2 mins at a time, 2 hrs terrible sleep every night. I finally had a sleep study done. Showed no apnea, 8 hypopneas an hour (which here in Aus did get labelled as having ‘mild sleep apnea’ and sleep specialist said it needed to be treated), and 20+ brain wake-ups every hour! I got a mandibular advancement device for the sleep apnea 1 yr ago. It helped my sleep a further notch, and also improved jaw pain (TMJ problems). More recently, I’ve seen a wholistic dentist and it seems the problem is really my brain waking up due to pain — he swapped the mandibular advancement device for a ‘SOMA device’ which fits on the upper teeth and lengthens the distance between top and bottom jaw. It’s brilliant, much less head/neck/jaw/shoulder pain, heaps better sleep, dreaming regularly for the first time in years — it has done more for improving my sleep than any of the other things that have given me notches of improvement in overall mecfs symptoms (hyperbaric oxygen most days, spirolotactone for EBV, Abilify for the last few weeks, usual supplements like d-ribose). Overall, with everything added together, I’ve still got PEM and have crashes, and still 95% housebound, but I can now work 40% from home without too much stress, and concentrate for multiple hours at a time. I found the better sleep improved my cognitive and neuro symptoms the most. Might be worthwhile checking out a wholistic dentist or one who specialises in TMJ work?
Hi Elinor,
Thanks for the comments on a SOMA device. Unfortunately when I tried googling it all I got were male enhancement products!?!
Can you give me a bit more information about finding the site?
Now I also have a very new update on my breathing issues. Just got back from the ENT and have honed in on part of the problem. Apparently my nasal passages collapse when I take in a breath of air! I can probably thank Ehlers-Danlos floppy tissues for that. Looks like some plastic surgery is on the horizon and until then–nose cones!
I’ve been running around the house with straws up my nostrils and having a good hoot about looking like a 6 year old–but it sure does help. I’ll be heading to the pharmacy tomorrow for something more ‘adult.’ 😉
Elinor is the latest Soma device U use looking like a night mouth guard often to prevent teeth grind and for sports but slightly modified so when u bite down ur lower jaw slides) forward (this is what my dentist designed for me for TMD and unstable neck). I use it some of the night and a good part of the day (when im not eating) and it does give some relief for both some of the time although the neck vertebrae r a mess of deterioration etc. IF not could u give a description and a url if available to see and/or find out more about? thks
Dear Nancy,
I couldn’t stand my CPAP, and do better on a jaw-advancing dental appliance.
If you’d be willing to pay UPS charges for packing and shipping, I could give you my 8 year-old CPAP.
(But from what I understand, CPAPs have undergone great improvements and need professional adjustments in air flow and masks.
Also, I had Laser-Assisted-Uvulo-Palatoplasty decades ago, and it did remove some of my excessive palate/uvula. After a few months of worse apnea due to swelling, my condition improved somewhat.
Very interesting interview, thanks to you both for taking the time to do this. Plenty of ideas there for me to explore
You could try Google Meet for future interviews as you can switch on captions with this tool, which might provide the captioning someone requested. Thanks again.
Sometimes i feel better when i don’t sleep well -for one or 2 days- and then i crash. But when i sleep well it doesn’t mean i feel better the next day.
Thank you for doing this, Cort. I wondered about Dr Stein’s online program, so now i am very impressed with her knowledge & humility. Looking forward to using the discount code! As she did, we just keep trying different things & hopefully someday something will get me where she is (energy wise, not geographically–too cold!) As a former cyclist, I am awed to hear she can bike for 2 hrs. I have gone from long distance riding (Seattle to Portland in 2 days, 100 miles a day), 50 miles for a fun day ride, gradually down to 10 miles in a day–still was grateful I could still do that, then 4 miles, still grateful–now can’t ride at all, can only walk a very short distance at a snail’s pace. So am interested in trying the PACING, not sure what kind of HRM to use? Though it may not be easy to do given that I have LBBB (left bundle branch block) so HR is often in 50s-60. May have to work with my cardiologist on that. But ready to try something new if I can afford it! Thanks again for this, knowing how tiring this must have been for you.
Thanks Lahna – as a former lover of bike riding I can commiserate. To be back on the bike again – how great that would be :). Pacing, of course, is important and she covers that fully. Good luck to you (and us all :))
@Cort
did Eleanor Stein comment any on researchers work that seemed to hold promise in her opinion?
recently saw Bhupesh Prusty’s work (aligning?)
with another virus investigator(s)
Joshua Leisk; Aline Nocon
very technical paper:
https://www.researchgate.net/publication/350043016_The_true_nature_of_an_autoimmune_disease
PreprintPDF Available
The true nature of an autoimmune disease
March 2021
DOI:10.13140/RG.2.2.35658.29125
Project: HASD – CFS/ME
In their paper, they propose/ coin a new name:
HASD CFS/ME
“Herpesvirus Autoimmune Spectrum Disorder (HASD)”
the authors article:
CFS/ME: A New Hope
April 2021
DOI:10.13140/RG.2.2.26147.37925
by:
Joshua Leisk
and
Aline Nocon
have written a much easier reader friendly explanation of their theory of cfs/me
at
https://www.researchgate.net/publication/350956432_CFSME_A_New_Hope
had less technical article with simpler diagrams of their cfs me theory
athttps://www.researchgate.net/publication/350956432_CFSME_A_New_Hope
We didn’t get into research but for my part Prusty’s research is fascinating. Looking forward to reading what I’m sure is a very different take on autoimmune diseases.
“What’s up Doc?” Excellent idea! Great job on the first of the series. It’s given me a lot to think about! More! More! More!
Dr. Stein has given so many fascinating references – could you post links or lists to help us find more info about the things she talked about?
Thank Dr. Stein for the lead to Dr. Andrew Huberman’s podcasts. It helps to have an informed reason to sustain a program like Annie Hopper’s Dynamic Neural Retraining Program. If you understand that people rehab physical functions from the aftermath of things like stroke, then you can understand that thru specific technique and repetition, you have the possibility of physical rehabilitation for some of the problems found in the ME/CFS population. Dr. Huberman has free in-depth neuro science classes on-line which Dr. Stein found incredibly informative and exciting as to why some of techniques are working and the possibility of leading to a refinement and expansion of her practice. He addresses things like sleep and nutrition among many, many more which are critical to good brain function and to learning/rehabilitation. Dr. Neil Nathan who works with many kinds of toxicity issues like mold and Lyme has patients that he could not begin to treat until they went through neuro plasticity retraining. My husband has been listening non-stop to Dr. Huberman since I told him about this. He now has links to these lectures on his chess club website. I highly recommend you too take advantage of this gift.
I was really surprised to hear that Nathan uses neuroplasticity first to set his patients up for the next treatments. Must be something about calming the body down.
No, he does not have all patients do neuro plasticity first. He has some patients that have not been able to improve or even deal with treatment until they go through one of these courses. After that improvement, they have been able to go low and slow on further treatment.
I thought I heard that from a recent conference meeting. It’s no surprise that something like that would really stick in my mind but it appears I heard it wrongly.
As a patient of Dr. Stein when she use to do clinical and having taken some older versions of her courses She is as authentic as they come. I am considering to go back for a refresher course with the newer augmentations in it on Neuroplasticity. One year ago i was not doing well nor very far at all on a Bike so i bought a electric pedal assisted bike and i can go for up to one hour out rides with a rest up for the return. Thks Cort for ur presence.
Well done Cort for starting this very needed series! This is a great initiative, and will be of immense help to many.
So please don’t take what I say below as any criticism of your interview, which was well done and extremely helpful.
I wish I’d seen this interview before I signed up for Dr. Stein’s program, which I now regret doing. First of all, I’m one of those very ill people who can barely manage a zoom call at this point (certainly not without a crash afterward – sometimes a significant one), that she mentions will likely not be helped by her program.
More to the point, I was unaware until this interview that her interpretation of changing one’s brain via neuroplasticity (which I believe in) is using things like Annie Hopper’s DNR (which I believe is possibly dangerous nonsense and, obviously, I have concerns with), and other such unproven psychological interventions.
We’ve barely managed to get past the PACE trail nonsense (and are still fighting it in too many places), and yet these psychological ‘interventions’ keep popping up (via many of the same actors, even) as ‘treatments’ or management for our disease: first the PACE trial, then Lightening process, then SMILE, now Gupta and DNR. Will this never stop?
While fully acknowledging the troubling anger issues of Professor James Coyne (I believe the man perhaps has a serious drinking problem?), I don’t believe his work – his critiques and criticisms of bad research – has ever been called into question. His work still has a fair amount of credibility with me for that reason. Not to mention his dogged pursuit of the PACE trial data and dissection of that awful ‘research’ came to our aid at a critical time, and it’s quite possible that only someone as irascible and contrary as Dr. Coyne would be capable of taking it on. On his website he takes issue with – with evidence – many of the treatment/management modalities Dr. Stein is using in at least two sections of her course, finding them at best unproven, and at worst a version of selling snake oil to people who can ill afford to waste either time, energy, or money. In this I find myself aligning with his POV. I realize I’m paddling against the current when it comes to this regard, but my POV is as valid as anyone else’s. I’m left wondering why on earth it is that, especially in the face of valid scientific criticism, these types of things are the only options ever offered: always without context, limitations, risks/downsides, or alternatives ever mentioned?
Dr. Stein seems a lovely and genuine person, and I’m sure her course will be helpful for many people who aren’t critically ill. But I wish I’d had this information before signing up. It’s, of course, no-one’s fault but my own for not investigating further before registering (although most of this wasn’t obvious until after you’ve registered).
It’s too late for me to withdraw (and I don’t believe she has a refund policy), so if not perhaps I’ll contact her to see if there is someone for whom this course would be more suitable with a verifiable financial need to whom my course spot can be transferred.
I have to say as well that I find it concerning that no-where in her bio above was it identified that she is not a practicing GP treating ME/CFS patients, but is in fact a practicing psychiatrist. I wasn’t aware of the controversy re: her course from Canadian ME/CFS patients (mentioned in your video), but I imagine for Canadians the fact it’s being offered by a psychiatrist rather than a physician is just as relevant as the fact it is being done outside the Canadian health care system.
So, all in all, I found this interview very helpful. Thank you for doing it Cort. I only wish I’d seen it sooner. More of the same can only help other ME/CFS and FM patients.
Sorry to hear you’re in such bad shape Anne! (You can watch the video’s of the calls afterwards).
Will it (Gupta, DNRS, etc. ever stop). No it probably won’t. Too much evidence in the form of patient reports and just recently with Gupta’s study is emerging.
In 2018, Neil Nathan, a functional doctor, reported:
“As my experience with sensitive patients evolved, I began to realize that limbic dysfunction/inflammation was far more common than I had appreciated, and I started recommending this for more and more of my patients with chronic inflammatory illness.
Specifically, those individuals with mold toxicity, Lyme disease with its coinfections, other infections, other toxicities, and/or viral and parasitic infections. At this point, I have now had somewhere between 150-200 of my patients use this program, and it has almost always been extremely useful. (I can’t say that about very many treatment programs.) Benefits range from good to superb, with obvious improvement noted within the first month or two of practice, and continuing to improve with time.”
https://neilnathanmd.com/newsletter-14-dysfunctional-limbic-system/
Yes, Dr. Stein is a psychiatrist but so is Leonard Jason – https://condor.depaul.edu/ljason/. As Dr. Stein noted she spent hundreds of thousands of dollars on treatments and only checked out DNRS (reluctantly) when some of her patients reported getting better.
Some of the recovery stories – particularly from people with MCS – basically a formerly untreatable condition – are incredible indeed. The course is not expensive relative to most medical costs and comes, I believe, as does Gupta’s program with a money-back guarantee.
Health Rising has covered the contextual origins of those practices – they have to do with documented problems in the prefrontal cortex and limbic system. Other mindfulness courses like the Mindfulness Based Stress Reduction Course (MBSC) have received many, many studies. In other words these things may not be out of left field as you might think.
If you end up taking Dr. Stein’s course you’ll find that neuroplasticity is just one of the many aspects of ME/CFS that she covers. You might want to check out the blog on the course on HR.
In my experience mindfulness based techniques help some and not others – which is pretty much par for the course for ME/CFS.
Thank you for your very diplomatic response to my rather incendiary post, Cort. My post was too strong and inflammatory in tone (although I still stand behind the points I made – which have their own evidence to back them, but which I won’t bore everyone with here. They could and should have been delivered much better).
I’ve been taking B1 lately – after reading the hormonesmatter website and your many posts here – which has given me greatly increased energy, but has had an unfortunate side-effect of giving me increased aggression at times, which has taken me by surprise.
Which isn’t an excuse – I should have counted to 10 before I posted, and I apologize for not doing that.
(FYI, for anyone else experimenting with B1, I’ve read that that’s a sign of being deficient in B3, which I’m trying to rectify. I’m grateful to the HormonesMatter website for stressing the possibility of having a paradox reaction.)
I still believe an examination of cautions and alternate perspectives re: some of the approaches mentioned above (well, any recommended treatment, really) would be beneficial to many of us here, and I for one would really appreciate hearing from some of those scientists and researchers. After all, science, or so I’m told, is done by vigorous challenge of previously held ‘truths’, and examination of as yet unexamined considerations. Perhaps if stronger criticism of the Alzheimer’s research you mentioned in your Fauci post had been given space we might not have lost two decades pursuing the wrong direction – which is tragic for all concerned. I’m not sure when questions and debate – even vigorous debate – became unwelcome in this regard. Even impolite debate. If it weren’t for the impolite debate and ‘vexatious’ requests for PACE trial data, we would still be struggling under the harms of CBT/GET.
Especially in an area such as ME/CFS where patients are so vulnerable, with so little tolerance for risk.
For instance, I think an interview or blog post with professor Willoughby Brown (‘Dark Night of the Soul’) could be very helpful to people who follow this blog and are considering mindfulness/meditation. I think an examination of how and when meditation can be dangerous or contra-indicated is beneficial, and can only strengthen the field. It’s only leaving risks and cautions unidentified that causes harm, not the practice itself. I know her study applies also to related fields, such as relaxation, visualization, etc… It drives me bonkers when merely trying to caution that there is another side to consider and risk to some people, is met with blanket condemnation and disparagement. That attitude and silencing leaves people without the knowledge they need to orientate and protect themselves.
I have no problem with Dr. Stein’s championing of neuroplasticity (specifically DNR which I’ll note in fairness she didn’t mention directly), only of that influence not being disclosed in her course description, and (in general whenever DNRS or MBSR are mentioned – this isn’t a reference to HealthRising) there being no place for questions or critical viewpoints, or alternatives.
There have been SO many expensive treatments'(in time, energy and $$) offered to ME/CFS patients over the years which have provided little benefit, some of which have harmed people physically, that I’m surprised there isn’t more discussion specifically about this. As you’ve said many times, what works for one person may not work at all for someone else, and may be harmful for yet another. Not to mention that as a patient group we’re easily taken advantage of. I hope you’ll consider making a space on HealthRising for examination of this.
We are all entitled to our POV and to make decisions for ourselves on what works for us and what doesn’t. When POV contains inaccurate information, though, correction is called for. Dr. Stein is a medical doctor. She is one of the very few ME/FM/ES specialists we have in Canada and has treated patients medically for decades. That she is also a psychiatrist is not relevant to her extensive expertise in this field. She does, in fact, work within the Canadian medical system in Alberta and due to our laws is not able to treat patients outside of the province. Her education course is a way for her to share her expertise with others without violating those laws.
As for neural retraining, I’m becoming increasingly frustrated with disparaging comments about a treatment option that is working for many. Is it a cure? No. Is it snake oil? NO.
All the supplements, treatments and protocols I used before I found neural retraining were, at best, keeping me from sliding further into the ME abyss. Most of it was making me worse. Neural retraining was the only thing that gave me a foothold to get out of the depths of that abyss and into a more functional life. My improvements have lasted for years and continue to grow. I shudder to think where I would be today had I not tried neural retraining. Like everything else in this illness, nothing will work for everyone.
It is insulting to those of us who are experiencing the benefits to make disparaging claims about the potential of neural retraining to help. We all know what it is like to have our illness disbelieved. It is a double whammy when something that helps is not only disbelieved but criticized and misrepresented. Please let’s all choose what is right for our own selves and show respect for what is right for others.
“Please let’s all choose what is right for our own selves and show respect for what is right for others.”
A very quick search on ‘criticisms of DNRS’ brought up the following articles:
https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/
https://www.health-ei.com/annie_hopper_dnrs.html
https://www.virology.ws/2019/08/21/trial-by-error-joan-mcparlands-lightning-process-experience/
Given the above, I’d say my cautions are appropriate, even if my language was intemperate.
I have yet to find more than a small handful of examples of respect being shown to those of us with questions and concerns for some of these approaches, and an almost blanket refusal to examine evidence that might go the other way. Of more concern, even in the face of real evidence of potential harm, the exhortation to not speak poorly of them outweighs any concern for individuals who may be harmed. All I’m asking for is fair warning to anyone considering these.
“It is insulting to those of us who are experiencing the benefits to make disparaging claims about the potential of neural retraining to help.”
And it is equally insulting to those of us with valid questions and doubts to disparage us for even raising the possibility that there may be risks and possible downsides, or other possible options that should be considered and offered instead.
I never made disparaging claims about the potential of neuroplasticity, but I did raise questions about one particular TRADEMARKED version being offered. I have the same concerns about MBSR (TM). Mindfulness meditation has been free to use – and btw has a thousand year history of cautions and contraindication study and documentation – but all of a sudden the re-worked version stripped of its context (and safeguards) with a trademark stamped on it at earliest opportunity is the only option?
One of the red flags that one might be in snake oil territory is when there is enthusiastic support for something with no cautions, context or warnings about misuse, and strong exhortations against revealing details.
Every drug on the market requires a ‘contra-indications’ specification. So that both prescribers and patients know when it’s safe to take, and when it’s not safe to take, and in which quantities, and alongside which other drugs or food. It also requires specifications as to dosage, efficacy, safety, etc… Not to mention specifications to its ‘on-label’ use. Those quality and safety requirements, seemingly, apply to non-pharmacological treatments as well, otherwise the PACE study results and consequent recommendations would never have been challenged, and we’d be living with them still. (Not that we aren’t, sadly.)
You’ll note that I said “I’m left wondering why on earth it is that, ***especially in the face of valid scientific criticism***, these types of things are the only options ever offered: always without context, limitations, risks/downsides, or alternatives ever mentioned?”
If any of these options were ever offered with even the slightest nod to possible downsides and references to where and when they may be appropriate or inappropriate, and even a passing nod to the equally scientifically valid criticisms, or with ANY other alternatives mentioned, I wouldn’t have posted what I did.
This isn’t a criticism of Dr. Stein – it’s a criticism of the field. Not even of the field: it’s a criticism of those in the field, and their supporters and enablers, who’ve overwhelmingly hijacked ME/CFS medical research and treatment – for decades – in favour of psychological interventions, often unproven or misappropriated psychological interventions, and who allow questionable ‘treatments’ to proliferate without pushback. The same field, btw, which has ostensibly studied ME/CFS for 40 years, with the result that Michael Sieverts wrote on here on this very blog only yesterday:
“As I taught myself more about ME/CFS, I noticed that two phrases often appeared in close proximity to the term: “It is not fully understood” and “There are no approved treatments.”” https://www.healthrising.org/blog/2021/05/30/science-insider-nath-long-covid/
Anne, I think our points of view are much closer than what it appears. I completely agree proposed treatments should present a balanced view of what the treatment may or may not do. It is completely legitimate and important for us to ask questions about proposed treatments and to expect honest and fulsome answers. I agree some of these programs are over hyped and that bothers me, too. It is also completely legitimate for us to be able to openly share results from these programs and have our experiences believed and respected. People are making solid, real gains in their health despite what might be ambitious marketing. We aren’t naive dupes being sucked in by scammers nor are we trying to hijack ME research. Comparing neural retraining to the PACE fiasco is very unfair.
It is curious to me when people want treatments enshrined in science when our illness is not yet enshrined in science. Many still believe ME is not a real illness because it isn’t scientifically ‘proven’. Everything we do to help ourselves is more or less a leap of faith at this point. We need quality research on ME and on treatments of all kinds. Period. Until that happens, though, we are left to make the best treatment decisions we can based on our own judgement and experience.
What I’m hoping for are open, balanced, honest discussions about the potential for neural retraining to possibly be helpful. There is no other treatment option I’m aware of that garners such polarized responses as this one. Let’s listen to those who are having success. Let’s also listen to those who aren’t. Somewhere between ‘it’s a cure’ and ‘it’s a scam’ is valuable information that can help us all.
Great idea with the series. I like listening to people talk in an unstructured way, sometimes, as there’s more room for diversification and picking up ideas that others may think are of little consequence.
I can see many similarities in Dr Stein’s experience and my own – okay I get that she’s an Assistant Professor and a doctor and I practice DIY healthcare! However I have found focusing on calming my flight/fight, sympathetic response and getting better quality of sleep have been central to improvements I have made.
It took me a few years of resting/pacing, focusing on nutrition and supplements and seemingly not getting anywhere, to then just feeling a bit of energy coming through. Now I have enough energy to get through my day. I still have to focus on everything and my blood/brain sugar seems to drop.
So I still have issues – I still have extensive food intolerances and I’ve had chemical sensivities for decades but once I started to calm down and sleep better I could immediately tolerate more food. I’m not dragging myself through the day anymore – just about propping my self up.
And generally I’m not completely wired either – though I did set myself off last month – too much dark chocolate – and on another occasion too many ginger biscuits/cookies – so then I slept for about two hours and was off the charts.
Interestingly I have had a horribly stressful time in the last few months and when things sort of resolved, I felt very tired and slept on and off, when I could, for about 3 days. I really didn’t want to trigger what I think is probably PEM. Anyway I didn’t end up with PEM, which I was really relieved about.
So I don’t believe I’m completely fixed, I’m just trying to coax the best out of my brain and body that I can and I feel I can relate to Dr Stein’s approach.
🙂
What a fascinating interview between two of the people I most trust on ME-matters!
Took a while to get through the whole thing but here’s a few notes on what jumped out.
1) Dr. Stein somewhere in the first half of the interview: Research and experience suggest that the low hanging fruit for neuroplasticity-based treatment are pain and MCS (i.e. issues most treatable by it).
2) 54 minute: The discussion on the need for the “calm but alert” sweet spot (neither sleepy/crashed nor wired) as well as deep sleep for one’s brain to deploy and process neuroplasticity based techniques strikes me as key. It stands to reason that ME sufferers whose primary ongoing struggle consists precisely in achieving those prerequisites will not likely experience significant success using such techniques.
My opinion is that one’s amenability to their benefits is determined as much by particular symptom profiles as by symptom severity. In my case, for example, the problem of overactive SNS-style energy (wired and tired), and its consequences on sleep, has continued to rise to prominence even as symptoms typically categorized as “pain” have receded. Combined with my late development of POTS, it may be that my candidacy for neural retraining has actually decreased even as my ME has become less severe by other measurements (not only less pain but increased physical functional capacity).
3) 1:03: Dr. Stein makes an important qualification about the role of the ANS. On the one hand, she has become increasingly open to the major role than an overactive sympathetic nervous system can play in the perpetuation and exacerbation of certain symptoms. On the other, it’s still “a secondary epiphenomenon” in relation to the foundational problems underlying ME/CFS, which, as Dr. Stein discusses earlier in the interview, are likely metabolic in nature as per Naviaux’s research. In my opinion, this, among many other things about her, is what gives Dr. Stein so much credibility on the topic. She has a uniquely informed, nuanced take on the limited, yet real, benefits that neuroplasticity can provide ME patients.
Conversely, this discussion also explains why some of us are wary about well-meaning “retraining” programs that do not clearly concede that we’re probably only dealing with downstream issues as we await true “cures” via advances in biomedical research and technology (ANS Rewire comes to mind). These programs make us wary because we understand the harmful practical effect of treatment overconfidence: when it doesn’t succeed, blame the patient.
4) 1:17: Dr. Stein summarizes the effect of neuroplasticity on core ME symptoms: “It may not create more energy. But it can decrease the amount of wasted energy” (my paraphrase).