Talking Long COVID and ME/CFS with Dr. Stein

[@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.

[@helens939]

Excellent discussion with Ellie Stein. I have had ME for 36 years and followed her 20 years ago, not realising she was herself a sufferer. I think she gave input to various ME Committees and documents, possibly the well accepted Canadian Consensus document on ME used for guidance by the medical profession. She is a sound source of advice along with Dr Sarah Myhill in the UK.

[@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!

[@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.

[@oibal60]

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

[@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.

[@kimmartindale9205]

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

[@neutralcorner5950]

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

[@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.

[@janemerrittmckenna2386]

Thank you! I will follow her

[@dc4369]

Great information, she’s exceptionally fantastic!

[@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!

[@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.

[@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.

[@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.

[@oliverbird6914]

These doctors can learn from us sufferers

[@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

[@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.

[@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! 💃🏻 😅🎉

[@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.

[@keenie7681]

Dr. Been. 🎉❤ Thank you 😊

[@hugh126]

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

[@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.

[@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 🙌

[@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.

[@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.

[@dorothyortiz7351]

Great metaphor re: pacing!

[@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.

[@David-d6w1m]

I have long Covid, which I got before I was taking care of my sister for almost almost a year and had Covid before leaving, but didn’t know what time and I think that that was the fifth or sixth time that I’ve had Covid I had the first time was before the even the vaccine the old Wuhan strain and almost died from that so I’ve had it so many times now unfortunately I only had one vaccine and I wish I’d never had that. Anyway, I was working for two weeks and I didn’t even notice that I had Covid. I was just tired and I was. I was helping my sister and on 24 hours a day and anytime that she needed me. I would be right there and so I got very, very little rest so that was nothing unusual for me to be tired. so by the time I got home I just didn’t feel right and my sister said I think you’ve got Covid. I said no no I’m just I’m just not feeling good. Well I have learned and should have learned many years ago, to always listen to my sister. She’s as interested in medicine as I was a medical researcher, a chemist, and a good immunology infectious. I was I was doing immunological work in Gainesville and and cancer research at the and that was at the University of Gainesville course I mean University of Florida I’m not thinking it’s early in the morning, and and cancer research and at the University of South Florida. So I have had plenty of research experience and I’ve just left medicine all my life. It’s just well ever since I I went to the university of Florida and in my medical research I just I fell in love with it. I couldn’t couldn’t wait to get my hand dirty. Well, come to find out, I got worse and worse and worse and went to the doctor and put me at a specialist. Watson Clinic Dr. Karen and she is very very good. She started on studying everything just about that was said and done and she did know the FLCC. I was kind of surprised because, you mentioned the FLCC and who she knew and I’d listen to this so much I think she was she was kind of surprised. I mentioned the methylene blue low-dose meth blue and she said methane blue that die. Doctors don’t know and that really something needs to be done to get the word out I told her about Doctor and told her that she needs to that I follow the protocol for the FCC and she said that she would look that up. I hope she’s telling the truth I am still I was yesterday yesterday I I had hold onto somebody to get up on a my scales that are my scales in there. The kind is about 2 inches or less less and I had to hold onto somebody and they had and the other hand side. I was holding onto my treadmill bar that comes out to get up on that one and a half or 2 inch scale that’s how bad I was and this was at 6 o’clock and I took a nap, and woke up less than an hour later and something kind of told me to let go or just not let go but just start walking without the walking stick and one that I have that I like to go hiking and things and and when I was in Jackson, I was going 10 miles today but since I’ve been back, I just haven’t been able to do that. I just start walking around not a problem. I thought well I don’t without without anything without the walking stick I was just holding it. And so I got so confident I just simply put it down and started doing things I did empty the dishwasher which I had to do and put new dishes in which I hadn’t been able to do. I just cooked myself a meal which I hadn’t been able to do to me it was it was a I was healed and you can believe, but I believe her higher power, and I was healed and ever since I’ve been go go go go go go go. I still have my not as bad but but my headaches and I I’m doing the meth and I’m having a difficult time and sleeping at night and I’m having to take a lot and I’ll try to keep this short, but I’m having to take gabapentin three ibuprofen oh and magnesium and I wish she was a glycinate. I don’t care much. I don’t think the citrate does very much good. And still I’m sitting up here at whatever time it is. It’s almost 4 o’clock 345 and I’m not sleeping and my hands have cracked open and I’ve been applying to my hands to all the parts I tried the ion gel and I could taste the metal in my mouth within minutes and I washed it off. I won’t do that again except on a small a small place. But I’m still wide awake and I have worked very very hard today. so I’ve probably gone close to my I would say at least 5 miles if not more today. So if anybody has any ideas, I’m only here literally because I’m 77 years old so yes they’re getting bigger anyway I have a lot of fun and and I just love you, Doctor being and I’ll try to keep this short because I’m I’m back to writing my writing a book and with dictation I can go so much faster than I could trying to type it on this little tinytablet have a great day. Love you all bye.

[@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.

[@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.

[@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.

[@marystolleis9492]

Jonathan Otto does presentations and webinars on red light therapy.

[@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.

[@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

[@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?

[@Swansue]

My story exactly

[@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

[@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?

[@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.

[@Truerealism747]

​@@maryr7593part of same condition

[@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.

[@2seeit]

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

[@KellyDyer-t8l]

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

[@Truerealism747]

Got pwerlines near me 27 years CFS fybromyalgia though I now no the cause autism and ADHD heds

[@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.

[@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.

[@strideroflilacts]

i found that using stainless steel and cooking with induction lessened the smells that were reactive for me. I also open windows and have carbon filter to remove smells as they're being produced.

[@maryr7593]

@@strideroflilacts others have said that cast iron doesn't cause them a reaction. That any pan with non-stick coating is what ppl are reacting to....but try getting any product today (2024) that doesn't have non-stick coating. There is a cooking product lab in CA that analyzes the chemicals released into the air when pans of different materials (types of metal and other elements used to manufacture the pan) get hot. They measured the how much of each chemical is released when pan exposed to certain temps. They also looked at the chemical reactions when onions, garlic, green pepper is sauteed in a Tbsp of oil...and how those chemical reactions (btw the food cooking, interacting with each other and with the heated metal in the pans). The lab was testing the products more for safety than for ppl who ended being sensitive to chemicals released in the air. The crockpot needs to be used in the garage when cooking meat lest I get a strong reaction (think waking up with a migraine that will not yield to medication and cooked meat is still in the air). I wondered if I tried to use a hot plate outside and tried using the pans that I have to cook something...if being outside would help dilute the smells. Living in Wisconsin makes cooking outside in winter a tad difficult. Also being over 50 yrs old means you have all your kitchen equipment...who can afford to go out and buy all new equipment? I can't even approach second hand stores anymore...they all have a certain smell and everything brought home has that smell as well. I stopped trying to cook a few years back since I was too sick to eat whatever it was I attempted to make. I was even getting the smells from the oven...setting me off. Why I am not overly bothered by food cooking in a restaurant, I do not understand. Not sure if it's because distance to kitchen and my dining seat (at restaurant) has gone through a filtration system? Also had the occasion of visiting a cousin who was cooking in the next room unbeknownst to me and I had no reactions to the cooking. The pan he was using was an expensive pan made in Brazil which also had a non-stick coating. The house did not have air purifiers, any hood system over the gas stove. Cousin cooked several different dishes and I had no idea, no reactions, nothing...until the food was brought out and presented on table...did I have a clue that cooking was being done. In my house, I got reactions from both my housemate and myself using the stove, oven. Microwave seemed to contain the smells but I've read microwave cooking wasn't good if done in plastic containers. I wish I understood how and why I can not seem to tolerate heat anymore. (Air temperature....anything above 75° F, I sweat profusely, get fatigued faster, have a need to drink a cool beverage and find somewhere cooler...outdoor temp. Inside temp...when it is really hot outside...if the inside temp is above 80°F...that is the uncomfortable temp. Using ceiling fans in every room run all summer long works some but my air conditioner seems a tad old as it takes awhile to cool the house down. (Need more insulation in the walls, etc...but even the energy efficiency company said they wouldn't retrofit the walls with cellulose or whatever as they need to add formaldehyde to the cellulose and it needs time to off-gas. Only if I wasn't living in the house for a month after and while they would be doing the insulation work...would they consider retrofitting the house. I have had enormous difficulties figuring where I could go that would not have potential issues with lodging, airplane/train air, etc. Everyone who has tried ended up being ill and suggested taking mylar blankets to put on the bed, bring a camping mat to sleep on if you end up having to go outside or sleeping on an open balcony....besides trying to bring all your own cleaning and personal products. Even if the lodging owner said they wouldn't use chemicals for cleaning...it doesn't work if the other guests there are using various scented products, etc. I know where I want to go but it also complicates things enormously as packing everything isn't possible when flying. Having this condition is so limiting...my entire way of life has changed completely.

[@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.

[@Truerealism747]

​@@DrEleanorSteindo you have any Information on sensory processing disorder and autism heds as the cause

[@DrEleanorStein]

Absolutely. I am very familiar with the work of Paul Cheney.And kenny deMeirleir And talked with them both personally on many occasions. I think what we are learning now about the centrality of mitochondrial function could explain a lot of what doctor cheney was finding the work out of harvard is confirming preload failure something he told us about twenty years ago.

[@DrEleanorStein]

​@@Truerealism747I have the sense from my clinical practice that sensory processing problems. Hypermobility and autism are more common among people with complex chronic diseases. But I'm not sure we have enough information yet. To understand if one causes the other or they are both related to some third problem, such as mitochondrial dysfunction..

[@Truerealism747]

@@DrEleanorStein thankyou rccx theory is good resource to seams mist I meet who I have CFS etc have autism ADHD

[@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

[@kimmartindale9205]

👌👌👌

[@supersport22]

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

[@KORTOKtheSTRONG]

👍

[@1961Lara]

I miss my energy level…

[@cdeets1138]

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

[@Truerealism747]

Yes because of autism and

[@kimmartindale9205]

🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

[@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!

[@dv270]

Long, profitable covid$

[@ogeoge6000]

Meat heals.

[@dianecassivi7528]

Has any one ever look into fluoride.

[@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 😢

[@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.

[@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.