Lorrie Rivers’s path to recovery led her to focus on alternative medicine and mind/body techniques.
Ed.
Lorrie Rivers’s story is not an unusual one – except for how it turned out. At the age of 22, she collapsed and was bedbound and housebound for the next 8 years. Like most of us, she saw everyone she could and tried everything she could – to no avail. It wasn’t until she explored mind/body and energy healing practices that she was able to calm her system down sufficiently enough to heal. Since then she’s been coaching others on how to do the same.
There are several things I like about her Long Covid and ME/CFS Summit. Please note this is a replay of an earlier Summit this year that I asked Lorrie to do after I somehow missed it.
One – with longtime practitioners Dr. Nancy Klimas, Dr. Charles Lapp, and Dr. Jacob Teitelbaum starting it off, it’s aimed squarely at chronic fatigue syndrome (ME/CFS) and long-COVID communities. Two – I think of it as a practical Summit – it’s filled with things you can do at home to try and impact these illnesses.
In what may be her first online Summit, Nancy Klimas talks about basic protocols, her ME/CFS supercomputer research, and her big long-COVID study.
The Basics Section starts off with Dr. Klimas talking about her basic protocols, her supercomputer research, and her big long-COVID study. Next comes Dr. Teitelbaum, talking about something we all do – but perhaps few of us probably do well – “self-experimentation” – and his “energy analysis” for ME/CFS. Two talks on long COVID and ME/CFS follow – including one by Dr. Lapp. Alex Howard gives a talk on his long and rather amazing ME/CFS recovery story and how he “decodes fatigue”.
Lorrie wraps the day up with her own conception of the four “Healing Phases of ME/CFS” and how they could inform your treatment protocols. The Bonus Section of the day digs into whether Paxlovid can help with ME/CFS.
“Deepening the Foundations” – Next, the “Deepening the Foundations” day includes talks on the gut (food-based supplements, going keto without problems, “protein sparing”, and fasting), plus no less than three talks on breathing – an apt subject given how clear it’s become that the breathing is “off” in ME/CFS and long COVID – how to reduce anxiety through breathing, Buteyko breathing, and breathing practices for people with long COVID from a certified breathing instructor.
Several talks focus on different breathing techniques that may be helpful.
New Frontiers – Mast cell activation syndrome (MCAS) is featured in two talks (one by Dr. Afrin), then Todd Davenport talks on something utterly practical and easy to do at home – how to monitor your heart rate for better health – and I talk on the latest research.
Electric Currents Day – then comes something I’ve never seen in an online Summit but which is sorely needed: three talks on vagus nerve stimulation, including one that features a new kind of apparently more effective ear clip and how to experiment with TENS unit settings. Interspersed with those on the “electric current” day are talks on the Arc4Health Microcurrent Device, infrared light healing, and ozone therapy. These may seem futuristic, but the NIH is devoting $250 million in its SPARC Initiative to finding ways to impact the electrical currents in the body for better health.
Mindfulness and Alternative Health Programs – Next comes talks on mindfulness and alternative health programs – most of which were developed for people with ME/CFS by people with ME/CFS. They include Dan Neuffer’s “ANS Rewired”, Ashok Gupta’s “Neuroplasticity Brain Retraining Program” – which has gotten good results in some studies recently – a self-directed Trauma Resolution Model, and others.
Other days focus on electrical devices, yoga and mindfulness.
Energy Medicine, Yoga, and Mindfulness Days – Two more days focus on Energy Medicine, Yoga, and Mindfulness. Nina Haley talks about how to help balance your hormonal cycles using yoga, Lorrie Rivers gives her “Three Keys” (to healing), and one intriguing talk asks if it’s possible to have a chronic illness without suffering...
Throughout the Summit, Lorrie gives many talks on mindfulness/meditation and movement techniques that helped her and others calm down their hyperactive systems and help heal. They include talks on her “Trilogy Meditation process”, “restorative yoga”, “yoga Nidra for sleep”, “calming meditation”, “floor yoga”, and others.
Focused mostly on “softer” alternative health techniques, this Summit isn’t for everyone, but if you want to give these kinds of interventions – which have been helpful for quite a few – a chance to try, Lorrie’s Summit is a good place to check them out and learn more.
As noted earlier, after I missed the first go-around of the Summit, Lorrie agreed to provide another go at it. This Summit, which runs from Sept 16th to the 19th, packs seven days of presentations into four. The same general rules apply. You can:
- Register for free and watch the presentations on the day they are presented, or
- Buy the whole kit and kaboodle for $57 and download the presentations, and watch them at your leisure.
You can register or purchase the Summit here
Health Rising is an affiliate of this Summit and will receive some funding when the package is purchased.
Thanks Cort, and Happy Birthday! 🎂
Thanks!
Happy birthday Cort. You always do such an incredible job of keeping us thoroughly informed. Including information on other therapies that might work for some. To me that’s awesome. Even if a few benefit then it’s worth it.
Like others, when I look back on my life I became very sick after an illness in grade eleven in the early 70s then slowly over months improved but would have periods of pure exhaustion, pain and poor sleep. I finally completely crashed in 2001. I’ve tried just about every therapy under the sun and all have made me much worse. However I still try the ones I can afford and no I don’t mind paying for their support. I’m now 66, still waiting for that miracle that may help me and a few others.
Cheers
Cort, an old friend from when we were both researchers at U.C. Davis sent me an abstract outlining an abnormality of the Nitric Oxide cycle in ME/CFS patients that could be effecting the endothelial cells of the Blood Brain Barrier (brain fog) and the gut (IBS). Have you posted anything related to this research? Additionally, just down the road, Dr. Davis’s lab at Stanford has identified another “metabolic trap” caused by a herpes virus that may be forcing the TCA cycle in the mito’s to be processing only amino acids to create NADH. I remember Dr. Davis mentioning that his son Whitney used to consume amino acid rich foods, if Whitney had a choice. We are both products of the U.C. System, and I am thrilled to know that both Stanford and Davis are recognizing that ME/CFS/Fibro/SIRS are complex “BIOCHEMICALLY BASED” diseases. I have infinitely more faith in both of these institutions, than the NIH. I am still amazed that NIH will not significantly fund LDN research at Dr. Younger’s lab, when the entire research community now recognizes that LDN is efficacious. This just proves that the NIH is a “political machine”, not interested in “true healing”, or the general welfare of those who pay their generous pensions. Yes, maybe enough folks need to contract long Covid, before the NIH takes this seriously. Very sad, and disheartening. Thanks for your tireless effort, and hope you had a nice birthday celebration.
Malheureusement je ne crois pas à ces thérapies. Je suis atteinte depuis 36 ans et j’ai tout essayé et je suis toujours malade et même pire. Disons que je crois que cette dame souffre plutôt de dépression ou autre maladie que l’EM. Je pense que si ces thérapies fonctionnaient, le fils du Dr. Ron Davis serait guérit depuis très longtemps. Think about it.!!!
Translation: “Unfortunately I do not believe in these therapies. I have been affected for 36 years and I have tried everything and I am still sick and even worse. Let’s say I believe this lady suffers from depression or other illness rather than ME. I think if these therapies worked, Dr. Ron Davis’ son would have been cured for a very long time. Think about it.!!!”
Hi Marie
By definition Whitney is very hard to treat. If we went by what has or hasn’t worked for him we would have a very short list indeed. He has tried EVERYTHING – including things that have helped other people greatly and they have, except for a few things, unfortunately failed. Because something doesn’t work for him or you or me doesn’t really mean that much for the rest of us.
For instance, Whitney did terribly on Rituximab but some people have clearly done very well on it.
Yes, Whitney did not recover but Ashok Gupta, Alex Young, Lorrie, Dan Neuffer, Eleanor Stein and others who recovered or greatly improved using these techniques. Some of those stories are posted on Health Rising’s Recovery Pages.
All I can say based on what I’ve seen is that they are worth a try.
Translation:
Par définition, Whitney est très difficile à traiter. Si nous nous en tenions à ce qui a fonctionné ou n’a pas fonctionné pour lui, nous aurions en effet une liste très courte. Il a TOUT essayé – y compris des choses qui ont beaucoup aidé les autres et qui, à l’exception de quelques choses, ont malheureusement échoué. Parce que quelque chose ne fonctionne pas pour lui ou vous ou moi ne signifie pas grand-chose pour le reste d’entre nous.
Par exemple, Whitney a fait terriblement sur rituximab, mais certaines personnes ont clairement très bien réussi.
Oui, Whitney ne s’est pas rétablie, mais Ashok Gupta, Alex Young, Lorrie, Dan Neuffer, Eleanor Stein et d’autres qui se sont rétablis ou se sont grandement améliorés en utilisant ces techniques. Certaines de ces histoires sont publiées sur les pages de rétablissement de Health Rising.
Tout ce que je peux dire sur la base de ce que j’ai vu, c’est que si vous êtes enclin dans cette direction, ils valent la peine d’essayer.
Whitney has contracted a herpes virus that is shunting away vital metabolites in the Kreb’s Cycle of his mitochondria. (There is also a genetic component.) His father’s “metabolic trap” theory makes sense. Especially since this disease is so biochemically complex! I am confident that Dr. Davis and all of his world wide collaborators have explored all of the obvious research avenues. It is going to take the collective thinking of many brilliant and dedicated Geneticists, Biochemists, Cell Biologists, and Physiologists to crack this nut. I used the word “dedicated”, because many Neurobiologists at the NIH still believe this disease is “just a sleep disorder”. Look at Whitney’s photos. Is that condition caused by something “psychosomatic”, or “abnormal brain wave” patterns during sleep? What the NIH is doing concerning this disease is “criminal”. And, I don’t use that term lightly.
Honestly I’m pretty wary of so called ME healers like Rivers and Howard, who charge a service fee for their content. Not a single soul on earth knows how to reach ME remission, so charging money for instruction is at best opportunistic, and at worst downright fraudulent. Also, there is absolutely nothing medically proven about their methodology so I’m frankly surprised to find them touted on this otherwise excellent research platform.
I’m always struck by arguments that people like Ashok Gupta or Lorrie Rivers or Annie Hopper should just provide everything free. This is their work – this is what they spend their time doing and they have to survive. Like every other business, they have offices to maintain, administrative staff to support, websites to build and keep on the web, advertising, etc.
Unless they’re independently wealthy they HAVE to charge. (Note that most of these programs come with a money-back guarantee. Too bad you can’t get that at a doctor’s office.)
If no one who doesn’t definitively know how to bring about an ME remission should be charging – what shall we do about the MD’s we pay so much money to?
As with most alternative health practices, there is precious little funding for clinical trials but they are slowly being assessed. This small study of Gupta’s techniques had positive results – https://pubmed.ncbi.nlm.nih.gov/33050630/ as was a study of mindfulness-based stress reduction in FM – https://pubmed.ncbi.nlm.nih.gov/30818032/ as has Annie Hoppers DNRS program: https://retrainingthebrain.com/research/
Plus check out a dozen doctors who have found the DNRS program helpful for their patients – https://retrainingthebrain.com/research/ and nine who publicly support the Gupta Retraining program – https://www.guptaprogram.com/.
It’s no longer possible to just blithely dismiss practices like this. Health Rising provides information on them because I, frankly, I would be horrified if some information was available that possibly could have helped some people and I didn’t post it for whatever reason.
Like virtually everything else they don’t work for everyone. I wouldn’t be surprised if they didn’t work for many. I, for instance, have not had much luck with them – but they certainly work for some people and that’s why they show up on this website.
There’s no reason to try these avenues if you’re not interested in them. They are offered as an opportunity – nothing more. As for the science, plenty more science is coming. Personally, I think that’s where we will get the answer that helps the most people in the long run so it will always be a main focus of the website.
Was diagnosed in 1991, so understand your reluctance of recovering. I teeter on trying further treatments. I feel my illness has gotten worse as time marches on. Sending Happy Birthday Wishes, along with much appreciation for helping this community shift through Medical Information.🎂🎂🎂
Cort, you seems like a good man with a good heart and a good grasp on reality.
Keep it up.
I also think, indeed, that ME is not the same for all people. It must be. How could the course of the disease be so different, and with different cures? And also, there are so many things that can trigger the disease. I write trigger, in a way that for instance MS where also several “triggers” start off the destruction of myelin, virus, stress, “this gas you’re using in operation to get people asleep” (sorry, cannot translate that in english , but I know that it has been discussed as a possible “trigger” among “anastatic people/nurses” who have gotten ill. ).
Every person that gets better is a victory, despite correct diagnose or “correct” treatment! We are a big unhomogenous group indeed!
The problem with many of these summits is that the presenters talk and talk and talk and most of it is fluff. I would like people to just get to the point and explain the technique/treatment succinctly. I know some explanation is needed, but please, for us with limited energy, please don’t put us through the lecture gauntlet!
Cort, I agree with you. In early 2021 when I was diagnosed with ME, my life was hell. Obviously I had made the medical rounds with no help. The Ashok Gupta program,along with a good ME doctor, was the first thing that began to stabilize me. At $300 it was worth every penny. Am I cured, no. But I have functionality and a desire to continue to live until medical discoveries begin to help us. Different things help different people, but let’s not close all the doors ourselves!
LindaB, you are spot on. I’ll say it again. “Cort is an angel sent by God” to help slay this beast. Stay in the fight Cort. You give us hope! Thank you!
Mais si on a rien trouvé pour traiter l’EM, comment peut-on dire que ces traitements ont guéri toutes ces personnes! Ces traitements sont bons, ils aident beaucoup de personnes, j’en suis certaine. Mais au point de les guérir, je n’y crois pas. J’ai vraiment essayé beaucoup de ces traitements, jusqu’à l’hypnose. On peut être bien pendant quelque temps mais ça revient. Alors peut on dire que si l’on guérit, c’est que ces personnes on des problèmes psychiatriques et pas neurologiques!!!
“But if we haven’t found anything to treat ME, how can we say that these treatments have cured all these people! These treatments are good, they help a lot of people, I am sure. But to the point of curing them, I don’t believe in it. I really tried a lot of these treatments, up to hypnosis. We may be fine for a while but it comes back. So can we say that if we are cured, it is because these people have psychiatric problems and not neurological ones!!!”
I think we cannot push any illness, either physical or mental, into separate categories. The brain is SO much more complex than this. It regulates or participates in everything that goes on in the body. If a thought process or practice can influence the brain/body to change a task (like breathing) in a way that helps the body to run (rest/exercise) better, and so heal better, why would you not want to know about it?
In a way, it’s like adjusting the fuel mixture or air intake on an (older) engine. If the result is a better running engine, what a simple solution!
Trans (Google)
Je pense que nous ne pouvons pas classer une maladie, qu’elle soit physique ou mentale, dans des catégories distinctes. Le cerveau est tellement plus complexe que cela. Il régule ou participe à tout ce qui se passe dans le corps. Si un processus de pensée ou une pratique peut influencer le cerveau/corps pour modifier une tâche (comme la respiration) d’une manière qui aide le corps à mieux courir (se reposer/faire de l’exercice) et donc à mieux guérir, pourquoi ne voudriez-vous pas le savoir?
D’une certaine manière, c’est comme régler le mélange de carburant ou l’admission d’air sur un moteur (plus ancien). Si le résultat est un moteur qui tourne mieux, quelle solution simple!
Thank you, Cort. This looks like a fantastic collection of educational material at a reasonable price. As tiring as it is to sit through this volume of stuff, I’m going to make time for it. I appreciate you bringing it to our attention
Our treatments are often trial and error, at least after trying to improve things with the basics. Some are lucky to have ME-literate doctors to guide treatment, but most do not have this.
In the absence of an ME-literate doctor, we have treatment guidelines from the IACFS/ME Primer, and the US Clinicians Guidelines. And we have Dr. Eleanor Stein’s “Pathways to Improvement” online course. And of course we have Health Rising.
After these, we never know what might help, so learning this information from those who have been there, or are at least trying to help, is useful. I like these Summits, because, like the other sources listed above, the information is curated!
I too wish that the methods by Lorrie etc was the answer. I have been very sick for 10 years starting 1992 then for 10years slowly improved using all the methods, deep breathing, heart rate, meditation, healing self hypnosis, rest, taking all the vitamins etc,LD naltrexone, isoprinosine as per Dr Klimas. But I keep having relapses. I have improved maybe 5 times. I have never stopped doing mind improvement, deep breathing etc. I still relapse. I don’t have depression and need help in the house most of the time when in relapse. I am very affected by PEM. My relapses usually happen after exercise. As I have improved before I have hope that I will again, but I’m getting old, 75 will my body recover from this relapse so far of 3 years?
It was good to see that they did help for a while but more is clearly needed Frankiedene. Good luck!
Yeah, yeah, everybody wants to make money. Is there a money-back stisfaction guarantee? I’m guessing not. I’m out.
Thanks Cort, I get so much useful information from your website- more than anywhere else. I’m grateful that you include anything that has helped some people because I never know what will help me so I try to stay open minded, despite all the disappointments from many things I’ve tried over the years. Among all those varied things though, there have been a handful that help a bit. Right now we don’t have the choice but to accept that there is no cure yet and no definitive explanation of the bottom line cause, although I feel there is much more hope now than ever before. In the meantime, I think that the “softer” techniques as you call them can offer a bit of improvement some of the time and that can be worth a lot! I also get what Marie Josée is saying that it’s a bit annoying when they are touted as a cure.
The funny thing is that per the medical establishment there is no cure for diabetes, no cure for high blood pressure, no cure for insomnia, no cure for migraine. No cure for MS, no cure for cancer. There are only treatments and drugs. Usually the doctors prescribes something to the patient, thye try it, it might work. If not, they switch the prescription. Most ofyen than not, there is a side-effect, for which they’ll often get… another medicine.
Why are people expecting from the medical establishment that ME/CFS will have a cure? Treatments that work fully?
Think about it.
This is the definition of learned helplesness, of waiting for your shining knight in white armour riding in on a silvery horse to rescue you.
Meanwhile, for every disease, for every little symptoms you can imagine, there are stories of people here and there that figured out a way to resolve it. Here and there there are a few doctors and scientists that have different models of how the body works. You wull not find them in the mainstream literature.
The medical establishment in the grip of Big Pharma is fixated on mitigating effects rather than eliminating causes.
If there’s no magical potion or pill to be sold….you have an incurable condition and good luck with that!
Take heart and ‘Festina lente!’
I am also 75 and improving.
Diagnosed around same time as you after many years of doing the rounds of the quacks.
My idea is that ME/CFS is not an illness ‘per se’, but a syndrome, a similar collection of symptoms manifesting as a result of manifold causes and conditions including the individual’s personal medical and psychological history as well as epigenetics.
Each one of us has to look deep into our own soul to unravel and tease out those causes and conditions and apply remedies according to our means…and Faith in the benevolence of the Universe which gave us birth.
Properly attended to, the still small voice of the inherent Wisdom of the body will guide us.
I’ve found the hardest part is breaking out of the Boom’n’Bust cycles; learning to Rest when eager to do More.
As we grow older, we feel greater urgency to accomplish worldly tasks and this is a red herring.
Old age is the time to be letting go of the worldly attachments and reconciling one’s life to the inevitability of its end.
I, once upon a time, told a sympatico GP that I intend to be perfectly healthy by the time I die.
Aesop’s fable of the Hare and the Tortoise comes to mind as I seek a way to end this sermon.
I hope it will inspire and reassure.
“As we grow older, we feel greater urgency to accomplish worldly tasks and this is a red herring.
Old age is the time to be letting go of the worldly attachments and reconciling one’s life to the inevitability of its end.”
Ewwwwwww! Now there’s a downer!
Be interested, curious and involved in life in anyway you can …
That’s being alive.. finding meaning no matter who you are,
no matter what condition you’re in! Watch for the wonder!
Thank you! I have tried through the years to express exactly what you just said, without success, but it is so true. It has only been experimenting with the results of research that Cort and others have shared on here that have brought me some semblance of health and productivity. I had a Chinese medicine doctor (and friend) ask me early in my Illness (2002) why I would turn my health & life decisions over to an insurance company or pharmaceutical company or govt agency as well. That was the beginning of some semblance of normalcy in my life, that paradigm shift. The thousands upon thousands of dollars, time spent in medical offices & hospitals in what felt like a hamster wheel of exhaustion certainly didn’t provide an ounce of normalcy or result. It was obvious, to me at least, that a virus contracted on vacation started this, exacerbated by previous medical “situations” that every single doctor through out the window without an ounce of consideration. It’s exhausting just recalling it all! It wasn’t until my mind shift that windows and doors opened to other opportunities at healing. Does my life look like it did pre ME? Absolutely not! But that doesn’t mean my life is worth less (or worthless,) it just means I am on a different trajectory and learning path. I can lament what hasn’t happened because of the lack of concern by most the medical industry or I can take my life in my hands and seek learning and understanding in how to heal in a more natural way, which honestly is how most of the world now and pre modern medicine handles health issues. Pharma & modern medicine has the world captivated under their money making spell. And that’s not being said flippantly as I recognize also the lives that have been saved and good that has been done. But it’s a big powerful industry making lots of money by people being sick and healing people would end that stream of infinite revenue. It’s a challenge for sure to not become cynical so taking my friends advice has proven fruitful in mine. And I hope in can in others too. Thank you Cort for all you do and happy birthday to my fellow Virgo.
Susan I believe that Naga was addressing more the “rat race” mode of modern life, not the intellectual or physical advancement of ourselves. As a woman in advancing years I am seeing the world in a different light than I did in my early 40’s when ME became a part of my life. I can’t lament the lost career because I am now in retirement years. This vantage point at this point in time renders a different perspective. In fact this point in life offers much more opportunity for learning, growth and enlightenment as the cogs of acquiring material possessions or climbing ladders of “success” that might have existed earlier in life have no luster. So it’s far from a ewww but more of an ahhhhhh. Just my perspective and thank you Naga for sharing yours.
I’ve tried just about everything apart from waiting for a shining knight on a silvery horse to ride in and rescue me. Thank you for giving me something to fantasise about. I hope he’s handsome 😁
Love your humour.
Thanks – something for all of us to keep in mind
“But that doesn’t mean my life is worth less (or worthless,) it just means I am on a different trajectory and learning path. I can lament what hasn’t happened because of the lack of concern by most the medical industry or I can take my life in my hands and seek learning and understanding in how to heal”.”
It’s a Multi-Multi- System approach to healing for me, or at least it made me functionable (until i got covid 1 month ago):
1. colonics to get rid of chronic yeast infection; then healing the gut from a “Leaky Gut” Syndrome;
2. Hair Analysis and toxic metal detox with Special Supplements to detox copper, mercury, and/or lead, nickel, etc.;
3. treating Candida, to include Nystatin (or Dyflucan);
4. upping low levels of vitamins and minerals;
5. lowering high levels of things, including heavy metals;
6. stress reduction;
7. finding out about HPA (hypothamic/pituitary/adrenal, and thyroid insufficiencies) and using natural adrenal supplement and Armour thyroid;
8. Go to a HOLISTIC DOCTOR, Naturopath or Nurse Practitioner who can test you for these issues above.
9. I was sick for 2.5 years with CFS until i found out about the above.
10. Then got CFS 2-3 more times from Epstein Barr Virus, Cytomegalovirus, Walking Pneumonia (Mycoplasma Pneumonea), and now the Corona Virus (!));
10. Read, “The Yeast Syndrome” and “The Yeast Connection”.
What I like about Health Rising and you Cort is that you do cover a spectrum of these diseases and the theories/knowledge along with them. Because that is the true difficulty, to cover these subjects, evaluate theoeries, and get some grasps on it! Thank you!
Is there by the way any possibility in the comment section to get notifications when one has commented further in a comment section that I already have commented on ? Like ie on FB, where I get a notification when someone else also has commented or even answered my comment? I mean we do leave our mail adress to our comments …
Thanks, Kajsa.
We’ve had trouble implementing that feature. We’ll figure it out eventually.
Infrq red light can be get for free:
From the sun in the hours before and after UV is high.
If have newer windows that block UV light, then all day.
On bare skin.
I know when to get out of the sun, my body lets me know. I used to have to be well-fed prior, things are a bit better now.
It was a crucial component of me getting better. And continues to be.
I was incredolous when an occupational therapist took an infra-red gun for my hands, mostly because I wondered if it was a cheaper device. To this day, two years later, knock on wood, my thumbs are pain-free. The deep pain that didn’t allow me to even grasp things. Knock on wood.
Joyeux anniversaire Cort. . Merci de prendre le temps de t’occuper des commentaires venant de l’étranger. J’adore lire tes articles. Ils sont comme un antidépresseur pour moi (hi hi).
Cort, thank you for continuing to post blogs about the range of treatments that can help. It is so frustrating to me when members of our community dismiss those who recover as having depression rather than ME. It is said that 5% of people with ME do recover. That is a very sad statistic. Nevertheless, 5% of the millions of people who have ME turns out to be a significant number of people. I choose to align myself with those who recover. If they can do it, maybe I can, too. I have made significant progress using neural retraining. I do NOT have depression. I have ME. Does it work for everyone? Of course not. Nothing in this illness works for everyone. If you try a drug or supplement and it doesn’t work for you do you write it off as a quack treatment and tell others to avoid it? Or dismiss it because someone charges money for it? Or demand a money back guarantee? Likely not.
We need in this community to be respectful of each other and our unique circumstances. We all want a cure. But as someone else pointed out, there are no cures for other chronic conditions, either. There are treatments that work better for some patients and less so for others. ME is no different. Wanting a cure does not give any one of us the right to dismiss the experiences of our fellow patients or, worse yet, dismiss their ME diagnosis. Doing this makes you no better than the doctors who dismiss YOUR experience as being ‘psychiatric’.
Neural retraining is an option just as every other suggested treatment is an option. Some options work in some people. What we do is try. And then make decisions on what is best for us. Neural retraining helps me regulate my very unregulated neurological system. For me, this is what leads to improved functioning and quality of life. Nothing else I tried, and I tried a lot, even came close to doing what this does. It brought me from severe to moderate, and sometimes even mild, ME. So I’ll keep doing it. And I’ll keep standing up for those of us who find relief from using these practices. We are just as informed and experienced with ME as anyone else and our voices deserved to be heard and respected.
Out of interest, what do you mean by “neural retraining”, and are you using a specific method?
Herzlichen Glückwunsch zum Geburtstag, Cort! (Happy Birthday :-))
Upon registration, will a time schedule of presentations be available?
Thanks!
Happy Birthday cort!!!!. May your new birthday year be a better one.
Thank you for this summit and all the precious information on your blog and all the hard work you put into this for us!!!.
I don’t understand. I would like to buy the 7 day sumit to listen to. Is this possible?. I cannot attend online as i need very small doses of information at one time.
💙
Thanks for this and Happy Birthday for Sunday 🙂 I’ve signed up to watch this summit and I’m aware of the topics and the speakers involved. These approaches have really helped me but I’m not completely ‘better’. I can however do more, think more and have more energy.
I know these kind of ideas are controversial and there can be vehement opposition, to anyone talking about them. I think this is unhelpful, as people may be very wary of sharing their improvements and so the overall picture is skewed.
The improvements I’ve made, do seem to be physiological but no one’s diagnosed me and no one’s monitoring me. However I believe in myself. I know when I’m doing better and I know when I’m worse. Somehow others sometimes feel they can make judgements from afar and that’s crushing. Almost no one in my real life, knows what’s going on for me on a daily basis. Be kind.
Tracey Anne (Burgess) you always take a wholesome and kind approach in your comments which I do appreciate. You have also mentioned in previous comments some of the things that have helped you, and to all those who take the trouble to comment on positive protocols many thanks.
Dr Sarah Myhill has given substantial information on her website for free about what works well for her patients with ME/CFS. Also her book ‘Diagnosis And Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis is very helpful.
I was ill for 22 years without a diagnosis until 2 years ago, my specialist said “I have no doubt whatsoever that you have ME and that you have had it for 22 years” So I am still quite new to finding out what is helpful to me. Most of my protocols are based on the information from Dr Myhill, not my doctor, wish she was. I would like to share them as I am am finding them helpful. Dr Myhill describes the recovery process as “windows of better health” which I like to believe I am experiencing.
Extra Vit C, Bio Care multi vits and minerals (although any comparative brand is perfectly OK), Dr Myhill’s minerals for sensitive stomachs, Neem toothpaste and mouthwash , Cisca salt pipe which has been very helpful for sore throats and sinus problems, Veg EPA fish oils for correct ratios of omega 3 and 6, transdermal Vit B12 spray, Epsom salt baths. yourgutplus and Phyto-V to encourage healthy gut bacteria and to encourage natural healing pathways (this is not from Dr Myhill but comes from Keep-healthy.com), antioxidants such as pomegranate juice and turmeric tea. Other suggestions I have recently chosen to follow are monitoring my heart rate to try to stay below 105 bpm (not easy to do), sticking where possible to 10 minute activities and then resting for 20 minutes.
I know it’s quite a list and everyone has their own but in the last 3 weeks I have had a lifting of awful daily dizziness which I have been experiencing for over 3 years.
I appreciate that many people will say they have tried all of these things and have had no benefit, for this I am truly sorry and wish everyone some improvement somewhere and somehow.
Thanks RT for your lovely comments 🙂 I would take various Vits like you and I’ve focussed on trying to improve my gut health, being aware of inflammation and trying to eat food that is more anti-inflammatory and so on. Attempting to promote a healthier level of time in parasympathetic nervous system mode, as against sympathetic nervous system dominance, has been key for me, as has the encouragement of more restorative sleep. I don’t fully understand how everything works, I’m just trying to assist and facilitate my body to do what it needs to do. I firmly believe that my whole system is far smarter than I am, I just need to help it if I can and try not make things worse.
In future, please put the dates for such events in the headline, or the first few lines of text.
Thanks.
Can we all post what tests we got, what we then did, what we took, to improve CFS a lot? thank you.
I’m all for yoga therapies and breathing techniques to help heal ailments. I tried these things to help manage my ME symptoms. I must have been doing something right as these therapies dissolved a calcified rock in my shoulder that medical intervention couldn’t fix for 5 years and I healed a spinal injury that had caused chronic back and leg pain. Unfortunately, I continued to deteriorate with ME. I suspect if I had more knowledge and support around pacing and PEM, I wouldn’t have continued to worsen. Doing these therapies without pacing is a waste of time. Decreasing activity and pacing should be the first line of management, then these natural therapies might have a chance of working. Now I’m in PEM continuously just doing essential things like dressing and cleaning my teeth. I wish I never let it get this bad, but how was I to know when doctors and government guidelines encourage us to increase activity, not decrease activity.
Yes, you’re right Amanda finding a level of exertion that is manageable and then staying within it, is central to this illness. Tragically the message from many doctors, family members and often ourselves, has been to push through limits and that has been so damaging. #MEAction’s Stop, Rest, Pace campaign has highlighted the need to cut back exertion, of any kind, that takes people with ME/CFS over their allowance. I’m so sorry that happened to you too.
Dear Cort,
Unbelievably grateful to you for your generous time and effort in providing hope and information.
Priceless – think of all the suicides you had a hand in preventing.
God bless you!!
Thanks, Theresa! 🙂