Talking Long COVID and ME/CFS with Dr. Stein

Talking Long COVID and ME/CFS with Dr. Stein
We have Dr. Stein with us today to discuss the similarities between long COVID and ME/CFS pathology and management. Dr. Eleanor (Ellie) Stein MD FRCP(C) is a medical doctor and psychiatrist. She spent the last 25 year of her 35 years in medical practice devoted to all things myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia, environmental sensitivities, chronic pain and long COVID.
Eleanor Stein MD FRCP(C)
Psychiatrist, retired
Clinical Assistant Professor
Department of Psychiatry, UCalgary
[e-mail]
www.eleanorsteinmd.ca
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Disclaimer:
This video is not intended to provide assessment, diagnosis, treatment, or medical advice; it also does not constitute provision of healthcare services. The content provided in this video is for informational and educational purposes only.
Please consult with a physician or healthcare professional regarding any medical or mental health related diagnosis or treatment. No information in this video should ever be considered as a substitute for advice from a healthcare professional.
Dr. Stein's approach towards managing ME/CFS, Long COVID, and similar conditions.
www.eleanorsteinmd.ca/pathways

[@63SpaceGirl]

It is wonderful people are connecting these illnesses. When i first heard about long covid, I said that's exactly what ME/CFS & Fibromyolagia feels like.

[@fouzisultan245]

Dr. Sarah Myhill from the UK is an expert in CFS/ EM. I recommend taking a look at her book on the topic as well as inviting her for a talk. She has quite a few talks on KZbin.

[@casca5853]

The medical establishment has ignored people with this neurological disease for many decades and put minimal resources in to research into the illness. People with ME have a high suicide risk which is an unacknowledged public health crisis. There is a desperate need for more biomedical research into ME.

[@maryreid2282]

I became ill with ME/CF in 1979 after taking a flu and never recovering for 7 year. I developed and followed a supplement programme of vitamins and minerals and diet gradually recovered to near full strength again. I then re-trained to become a nutritional therapist.

[@wzupppp]

Are you now fully recovered?

[@maryreid2282]

99% recovered, have occasional days.

[@wzupppp]

@@maryreid2282 please share what diet you followed

[@sneakypress]

When you had that flu in 1979 , did you go to the doctor ? And were you given any medicines to help you recover ? And if so , what was / were the medicines. Thank you.

[@maryreid2282]

​@@sneakypressWent to the doctor because I felt so ill and couldn't get over flu like symptoms, months passed with no improvement, was referred to different hospitals and specialists but no medication and at that time no-one knew what I had. For 7 years I struggled through life, in bed much of the time and could only walk a few steps without lying down to rest from exhaustion. I finally spotted a newspaper article with a story about a girl with this illness it called ME, it described my symptoms perfectly. My doctor had heard of it but no idea how to treat. I at the time was suffering from candida so read at book about it and thought I would try to get rid of it, one symptom less to cope with. For a year I strictly followed his suggestions, sugar free diet and supplements. At end of this first year I felt quite a bit better not only with no candida but stronger in myself, less head fuss and could walk bit further, so I continued this regime for years, getting better and stronger year on year. Reading more nutrition and getting an understanding of how different supplements may support different areas of the body. I finally felt so much better I found a nutrition college in London, so I went to study there for 3 years, to get a greater understanding of how to use supplements and understand what I had actually done myself to get myself back to full health. I can now climb the mountains again and live a full normal life.

[@midwifeyork121]

Dr Mobeen, thank you so much! I have been struggling with this for 11 yrs and seem like such an outsider, being misunderstood by most doctors. Dr Stein's talk is SO HELPFUL.

[@calista1280]

Try Dr Peter Osbornes book on Gluten, No Grain, No Pain. It helped reduce my pain and increased my energy substantially! Also, watch some recovery videos on Raelan Agle's channel on ME/CFS & Fibromyalgia. They talk about pacing & brain retraining. When I switched my outlook to the soreness just means I had a good workout today. Like when I was lifting weights & bodybuilding. Now, it just means I did a lot of normal activities today... But I am able to build up my stamina and muscle strength now. Which I couldnt do before I stopped eating gluten! Even tho I don't have Celiac, as it affects all of us by causing inflammation in the body. I hope you have similar results!

[@breathless8075]

Exactly when I was diagnosed with Fibromyalgia. Along with Chronic Fatigue Syndrome. 1989 for me and unfortunately my illness has progressed to the point that it's really affecting my day to day ability to work around the house and cook.

[@oibal60]

Thanks again. So glad I'm still in the control group.

[@thereseschab5042]

This is my story exactly...30 years of near total debilitation and only gas lighting. And NO support at all, no family, no friends, really awful

[@kimmartindale9205]

I understand...same 30 years💙

[@thereseschab5042]

@@kimmartindale9205 The worst part for me was how people treated me. I was trying so hard and people took advantage and manipulated me because I was so vulnerable. I have learned the lessons now and only take care of myself. I am so much more peaceful just being alone with my dogs. The cruelty of unbelievable. But it is over now. I try not to think of it and just know that the real truth is God and Love and I've always been taken care of.

[@lilrodz]

I had 2 different strains of the C virus. Then long C, then diagnosed with autoimmune and more. 👉never had a cough with any of the viruses or LC. I had massive sinusitis with the delta that was the most damaging strain. Thanks for the info doctors.

[@lindee234]

I have experienced not being able to move my body. My mind is active but I had completely used all possible energy. I spent close to a year in bed like this and then began very slowly to get my body moving. It was complete body exhaustion. Now I manage by mentally accepting I can’t do near as much as I thought I could, half a day is all I can manage and this means if I go out in the morning that is my physical excursion. Mental and emotional exhaustion comes more quickly and has the same result. Hard for people to realise this. Mind set is essential. Meditation sleep, I sleep for 12 hours or more. Sometimes I sleep in the afternoon because I have too. Acceptance of these necessities is absolutely necessary. I walk a certain distance. I can increase it a little. If I garden I often forgo walking because I use up energy. Cbd helps me with pain as do muscle relaxers. Mindfulness is necessary. Absolute control of anxiety and awareness of where my muscles are. Relaxation awareness. I have change to muscle structure causing dislocation of fingers and toes and contraction of muscles up to neck now. It creeps though body. I keep histamine reactions as low as possible and I believe allergic reaction is a real problem. I use a nasal spray. Thank you for outlining these conditions. The mental component is huge in helping oneself. It does really restrict life as you say. But without management at little cost as many can’t afford these extras. Suggest colloid silver as well. I’m nearly 70 and have lived with this for probably 40 plus years. My pain has certainly improved with acceptance and energy/ body stress management. Again thank you.

[@kimmartindale9205]

I cried hearing this 🙏🙏🙏🙏🙏 it make so much sense

[@vickydittfield9822]

Nicotine patch has been reported to block certain viruses.Also latent viruses resurface with exposure to c-viruses,maybe others. I am trying the nicotine gum,as the patch creates a burning sensation,Some energy also comes with the 2 mg. Of nicotine.

[@sherip1270]

ME/CFS caused me paralysis. After 10 years, I have improved dramatically. I did have to learn to walk again, balance and weakness still can be issues along with other PEM symptoms when I push my energy envelope.

[@oliverbird6914]

These doctors can learn from us sufferers

[@wendylpa]

Similar to the guest, I’m 34 years into my journey/daily battle. Her & I appear to be health twins, right down to passing out from POTS while working in a hospital (dog years before the POTS acronym existed)! Epstein Barr Virus was the culprit that kicked off my 3 decade education to healing…since no MDs had a clue back then. Conventional MDs still barely know what’s up…

[@calista1280]

I was watching Raelan Agle on Recovering thru Brain Retraining and it helped switch up my outlook with LC after dealing with severe Fibromyalgia after an accident, since 92! I had some improvement doing a Keto Diet, But was looking at Carnivore results and then I discovered Dr Peter Osborne s book No Grain. No Pain, which had me eliminating GLUTEN... This caused a dramatic reduction in the aches, muscle/nerve pain, spasms & Brain Fog! I also noticed an increase in my Energy level! Gluten causes inflammation, which takes a lot of the body's resources to fight. I have been feeling better than I have in the last 30 years! I got my Life back & a feeling of Youthful Energy! 💃🏻 😅🎉

[@neutralcorner5950]

Very interesting video, helpful to try and understand these very complicated issues.

[@janemerrittmckenna2386]

Thank you! I will follow her

[@ramonesteve4533]

Moltes gràcies Dr Been i Dra Stein, molt interessant i pràctica la exposició, i molt humils i seriosos en les seves opinions. Gràcies, gràcies, gràcies.

[@KenDavis761]

Had ME/CFS since 1992 - diagnosed in 1997. A lot better in the last 5-10 years and another leap forward after catching covid - go figure.

[@heathersosnowski]

this is very cool. 'what can we do in our everyday lives that is low to no cost, that can activate our own body's capacity to heal.' totally brilliant.

[@dc4369]

Great information, she’s exceptionally fantastic!

[@HappyHealingTrain]

Thank you for discussing this horrible condition ME and Long Covid. I got Covidin april 2020, mild infektion, but haven’t fully recovered yet despite 100s of different regimes and treatments. But I am making progress 🙌

[@Aetherfield]

Dr. Been, Please do a video on Dr. Hamer’s censored explanation that the root cause of disease stems from The 5 Biological Laws. As someone whom has studied these inflammatory state diseases, German New Medicine explains best why, how & whom will suffer from these auto-immune diseases. He has studied thousands of brain scans that prove his silenced theory of dis-ease.

[@Richexperience1]

LC & diagnosed ME/CFS for the last 4 years. I have been using methylene blue and Photobiomodulation for the last 6 months with about 10-20% improvement. The methylene blue also seems to help a lot with depression. Nothing else I have tried seems to help from a supplement standpoint but I still take a large amount of supplements. Great discussion- meditation, PBM, good food, pacing. I’m working on pacing and acceptance right now. Thank you both!

[@robinhood4640]

The only thing that allowed me to get something similar to a normal life, after suffering for 7 years from my body doing stuff the doctors couldn't understand, was to stop breathing air that causes the inflammatory response to get out of control. The inflammatory response out of control, causes chronic inflammation and this affects everything. I live in a region that is considered to have good air quality. The problem is that it isn't good enough for all of us. I was told by many doctors, like most people with cellular dysfunction, that my body does stuff for no reason whatsoever (other than psychological obviously). When the body does something, there is always a reason, irrespective of whether doctors know what the reason is or not. The vast majority of doctors who are accepting the problems not to be psychological, are still more than happy to accept that it is perfectly normal for triggers to be pretty much aleatory, sometimes places or activities do and sometimes places or activities don't trigger flares. Sometimes emotions or stress do and sometimes emotions or stress don't trigger flares. When what you do, what you eat and what you think doesn't allow you to understand why things do or don't trigger flares, you need to look into what it is you are breathing, while you are doing the things that do, or sometimes do and sometimes don't trigger flares. There are thousands of studies explaining this, and nobody has good air quality, even if they cannot see any of the invisible particles/gases, they are entering their bloodstream and affecting cellular function.

[@keenie7681]

Dr. Been. 🎉❤ Thank you 😊

[@bertramhall6131]

Dr Been and DR Stein thank you very much for this LC and Cfs discussion. In South Africa there is very little knowledge and/help with LC andCFS. I have spent Thousands of R for very poor results, so I will definitely follow up with Dr Stein’s guidance. Thanks

[@marystolleis9492]

Dr. Stein's presentation was very helpful to me. I'm suffering from many of the symptoms of CFS and more as well from severe, prolonged (one year+) exposure to secondhand and thirdhand smoke as a result of my efficiency apartment neighbor's continuous smoking in his apartment (prohibited by our lease) with all of his windows open and sometimes also the door ajar.😢

[@hugh126]

MNM made a big difference for me, got me up and moving again without experiencing the horrendous crashes that I had previously.

[@dorothyortiz7351]

Great metaphor re: pacing!

[@Unitedstatesian]

Low-dose Nicotine patches are helping many with Long COVID and MECFS. The cell danger response being reset through the parasympathetic upregulation could be a reason why it helps.

[@barbarahenninger6642]

I got it in 1984 and at that time we were told it was all mental. After you hear that a number of times from medical professionals, you really do go a bit crazy. I didn't get the POTS, nor food allergies, but all the other symptoms Dr. Stein mentioned. The only thing food related was that I became unable to drink any alcohol, where before I could drink normally.

[@Swansue]

My story exactly

[@pilgrim7232]

3 yr long covid.... methylene blue eliminates my brain fog and fatigue... hydroxychloroquine has stopped the citokine rheumatism attachs, ivermectin lets the first two work... it takes all three for me to function

[@HappyHealingTrain]

I do all 3 as well. How much MB you take a day? I do it in combination with red light therapy to increase energy.

[@calista1280]

I was watching Raelan Agle on Recovering thru Brain Retraining and it helped switch up my outlook with LC after dealing with severe Fibromyalgia after an accident, since 92! I had some improvement doing a Keto Diet, But was looking at Carnivore results and then I discovered Dr Peter Osborne s book No Grain. No Pain, which had me eliminating GLUTEN... This caused a dramatic reduction in the aches, muscle/nerve pain, spasms & Brain Fog! I also noticed an increase in my Energy level! Gluten causes inflammation, which takes a lot of the body's resources to fight. I have been feeling better than I have in the last 30 years! I got my Life back & a feeling of Youthful Energy!💃🏻 😅🎉

[@pilgrim7232]

@@HappyHealingTrain i mix my own MB...1 grm to 100ML distilled water.... I way 260lbs... I take 3ml/30MG per day orally if I want my brain to function....i chew up a Vit C tab and squirt the MB in with it... cuts the color stain and tastes like well water from a rusty cup... all good... i'll try the red light...thnx

[@awesometulips9427]

Please, do you have a link to this info? I only heard about each product but separately and didn't know methylene blue was good for this condition 😮. Thank you

[@lando2755]

@@pilgrim7232are you able to exercise now?

[@kimmartindale9205]

👌👌👌

[@micaineseeley5339]

It would great it you would review CIRS as a cause of ME/CFS

[@maryr7593]

Yes pls...it is very confusing. CIRS vids talk about if ppl are also diagnosed with MCAS, ME/CFS....worse for CIRS patients...implies that CIRS is a different condition but seems to be very similar in symptoms. Was CIRS diagnosed first (by year), then ME/CFS (1988), MCAS (2016)? Or is CIRS the mechanisms that causes all these similar syndromes? Can someone explain this?

[@micaineseeley5339]

@@maryr7593 CIRS is the mechanism that explains ME/CFS, post vax, post covid etc. It also explains MCAS, for example in some people with CIRS they have an upregulation in the gene that produces histamine in every nucleated cell. There is validated diagnosis and also a very effective treatment, but very difficult to follow; speaking from experience. ME/CFS came first, the first CIRS publication was in 2010 in relation to dinoflagellate exposure.

[@marystolleis9492]

Jonathan Otto does presentations and webinars on red light therapy.

[@WAWSB]

I'm curious, how much did the ykw (V) played a role in your diagnoses.

[@dianecassivi7528]

I have fibromyalgia and what happens to me is I feel like I have gone for a run and didn't even start and already fatigued

[@koerttijdens1234]

I think that the political correct food advice that fats in food should be avoided caused all of this.

[@calista1280]

Yes! The more meat, dairy, butter & eggs I eat, the better I feel!!! Eliminating grains/gluten has also helped tremendously too! Carnivore Diet & The book, No Grain,No Pain by Dr Peter Osborne has helped me get my Life and energy back! WooHoo!🎉😂

[@oliverbird6914]

It's way way way way more complicated than that..not to say it doesn't play a part

[@SD-vy7gj]

Thats because keto triggers fat burning mode. Fasting does the same thing. Without filling you long herbivore intesting with slowly rotting animal protein. All country's that consume the most AP The most ibs and bowl cancers. Figure it out. It ain't rocket science pet.

[@koerttijdens1234]

@@oliverbird6914 It works 2 ways. Fats are important for brain and nerves and eating more sugars to get energy brings problems.

[@williamh4172]

Seed oils, refined carbs, processed foods as well.

[@KORTOKtheSTRONG]

👍

[@user-ok9ym9zm9m]

My uncle lived near powerlines like perhaps 20 in back of him as he sat in his living room watching his big TV? I brought my Multi meter into his house and showed 190 it read , he undermined me ? He was admitted to hospital shortly after with covid ? And passed

[@davidbarry6900]

28:00 in discussion of the use of infra-red light, does anyone know if regular sunshine exposure also gives a benefit (works in the same way), assuming it is not too weak (e.g. winter)?

[@Richexperience1]

Sunlight works. Morning and late afternoon are best because of less UV exposure. I will alternate between my light and sunlight depending on availability.

[@DrEleanorStein]

Sunlight does help for sure but many of us aren't outside enough.

[@cdeets1138]

Did Dr Stein ever utilize the work of Paul R Cheney, MD ot, Kenny de Merlier?

[@DrEleanorStein]

absolutely, I even invited Dr. De Meirlier to Calgary in 2008 and organized a very successful webinar.

[@kimmartindale9205]

Thank you for this great interview. The medical doctors simply are throwing more and more drugs at me. I undersand sm are needed and appreciated for some reliefs, i feel i am we are now treating drug dependency, which ...particulary for hyperadrenergic PoTS/ hypertension

[@maryr7593]

Dr Stein talks about cooking from scratch (no packaged food)....How do ppl manage to cook when your body reacts to the cooking smells? (I react to food cooking on stove, on fire/charcoal/gas grill, oven as well as air fryer. I have not figured out if it is the food cooking odors or the possible chemicals released from the pans when heated or if its the chemical odors released when pan is hot and reacting with the food. Microwave not so much. How do ppl handle this?

[@DrEleanorStein]

great question, the reaction to the smells might be a type of sensitivity. I didn't have time to go into that but the brain can go into overdrive when we are so ill. I have a few free videos on my webpage on chronic pain that explain the process. It is similar for sensitivity to smell. This was one of my severe symptoms.

[@RonnieM]

Trying to keep a reserve doesn't work for me. If I'm not feeling terrible I'm going for a short hike or motorcycle ride for mental health. We have to live day to day and make the best out of what's left. For someone who has dealt with this for over 30 years and certainly not willing to throw away good days. Just in case it applies to anyone else a carnivore diet of mountain cattle raised properly has made all the joint pains go away. I don't know whether it was an oxalate sensitivity or that the body had to work harder to digest plants?

[@kimmartindale9205]

🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

[@elkegreiser1799]

Important question for me: did you get vaccinated with COVID-19 vaccine and if yes how many shots did you get?

[@DrEleanorStein]

yes I did get vaccinated until after my long planned trip to the Antarctic. People testing positive for COVID weren't allowed on the ship and I didn't want to miss it. That was in Jan 2023

[@elkegreiser1799]

@@DrEleanorStein did you have any trouble with the vaccine and which vaccine was injected? Thank you for responding my first question.

[@indo3000]

@@DrEleanorSteinbut the vaccine doesn’t prevent transmission at all. Not even a little bit. They didn’t even do any studies that even tested transmission. There is no such thing as a rare breakthrough infection.

[@Swansue]

How to get over the chemical sensitivity

[@monicali2608]

No carbs for a while. VitD and magnesium, zink.Whatch Dr. Eric Berg videos.

[@DrEleanorStein]

I didn't get a chance to talk about neuroplasticity-based therapy but this is what helped me recover fully from MCS - which was debilitating.

[@kimmartindale9205]

I got much worse regarding hyperadrenergic and hypertension

[@DaisyIdes]

I caught covid at xmas last December, which was followed by 4-5 months of long covid. The overwhelming fatigue and weakness kept me flat on my back. Teh result was a DVT which let loose and hit both my lungs. I spent 10 days in hospital, and am not on bloodthinners…perhaps for the rest of my life. 😐☹️ I was struck by ME/CFS after what I think was Epstein Barr in 1988. It took 10 years to get to a 60% recovery. I have never been the same. Post viral illnesses are real.

[@1961Lara]

I miss my energy level…

[@cdeets1138]

Dr Jay Goldstein always believed that the limbic system was the cause

[@supersport22]

It’s all due to lack of sunlight. Along with an abundance of toxic exposures.

[@dv270]

Long, profitable covid$

[@ogeoge6000]

Meat heals.

[@Gina-dn6xm]

I'm kinda lost on this type of treatment. Mind/ body connection? You can control your fatigue through meditation? This is either a biological disease or not. We need biomarkers. I have tried everything she has talked about, and nothing changes. I have an infrared sauna in my lower level, and I use it every other day. I think numerous diseases are falling under the name ME/CFS, and all are not the same. This may have worked for this person, but for me, changing diet, pacing, infrared, ozone blood therapy, ozone sauna , and numerous medications, nothing works long term.

[@wildgardens]

Couldn't agree more this is why we so desperately need biomarkers so we can separate out this group of people that are helped from basic life-style changes, they should not be able to speak for the rest of us. In fact recent studies have shown there are different phenotypes when looking at the immune system. The sooner these mind-body phenotypes are filtered out and given their own label the better!

[@charlesgreen7408]

Have an appointment with my doctor ,at least the Nurse suggested long covid. KU med Kansas City, I can't loose my job over this, real struggle 😢

[@dianecassivi7528]

Has any one ever look into fluoride.

[@ramonesteve4533]

Moltes gràcies Dr Been i Dra Stein, molt interessant i pràctica la exposició, i molt humils i seriosos en les seves opinions. Gràcies, gràcies, gràcies.

[@lindee234]

I have experienced not being able to move my body. My mind is active but I had completely used all possible energy. I spent close to a year in bed like this and then began very slowly to get my body moving. It was complete body exhaustion. Now I manage by mentally accepting I can’t do near as much as I thought I could, half a day is all I can manage and this means if I go out in the morning that is my physical excursion. Mental and emotional exhaustion comes more quickly and has the same result. Hard for people to realise this. Mind set is essential. Meditation sleep, I sleep for 12 hours or more. Sometimes I sleep in the afternoon because I have too. Acceptance of these necessities is absolutely necessary. I walk a certain distance. I can increase it a little. If I garden I often forgo walking because I use up energy. Cbd helps me with pain as do muscle relaxers. Mindfulness is necessary. Absolute control of anxiety and awareness of where my muscles are. Relaxation awareness. I have change to muscle structure causing dislocation of fingers and toes and contraction of muscles up to neck now. It creeps though body. I keep histamine reactions as low as possible and I believe allergic reaction is a real problem. I use a nasal spray. Thank you for outlining these conditions. The mental component is huge in helping oneself. It does really restrict life as you say. But without management at little cost as many can’t afford these extras. Suggest colloid silver as well. I’m nearly 70 and have lived with this for probably 40 plus years. My pain has certainly improved with acceptance and energy/ body stress management. Again thank you.