This channel is dedicated to explaining the research into ME/CFS in an accessible way as well as to discussing my own personal attempts at improving my condition. I also hope to feature interviews with experts as well as patients. An older version of this channel - and of which many videos are still available - talked more specifically about POTS.
My websites: www.patrickussher.com (for my books, music and consultations service),
www.themythofprimarypolydipsia.com (free medical hypothesis on thirst in ME/CFS, POTS, Long Covid)
I took D Ribose for 3 months . I felt like it helped me feel 25% better .. I stopped taking it only because I ran out and never bought any more . Now I feel like I would have to research it again .
Very interesting video, thank you Patrick. I believe this could potentially help me as well, but am now thinking it might be better not even trying it, as to prevent alzheimer etc... this is a new dilemma you just presented me with! 😮 I am taking Nad+ daily, which is really called "nicotinamide riboside". So, I was worried this was the same thing as D-ribose. But when doing a quick Google search it seems to be different things but with a similar name. Nicotinamide riboside being more closer to Niacin, vit b3, while D-ribose is closer to a sugar. I just wanted to write this in case any other viewer might wonder the same thing.
Oh, I know - it is quite the dilemma! I feel great on Ribose but after 3 years on it, I just don't want to run the potential risk of ending up with something worse down the line. The joys of supplements, eh? How do you find NAD+? I've never tried it.
What’s the difference to Amifampridin/ Fampridin? That’s a potassium channel blocker which eliminates my fatigue and PEM - developed against MS symptom of weak leg muscles. Dr Boehmeke published a paper about it beginning of this year. When I stop the drug I crash within 12 hours. Proof that it works very specifically on that symptom.
Thank you for sharing your experience with that. Mitodicure will reduce intracellular sodium (which probably will also mean that it will help increase a bit intracellular potassium). So the mechanism of action seems different.
There's also some good news from Argentina, there's a drug called rintatolimod, As of 2022, it was approved in Argentina and is ready to "Launch pending FDA export authorization"
I was abused into chronic Lyme. 2016 by fake conventional old lady. Evil bitch conventional dr. And mmr injured 2013. And soul swapped and prior bc of all These projector med ppl in system idiot. Yrs of living lie. This kills your joy and chronic abuse which I got targeted in 2013 they telling the gaslighting medical.conventional fake drs about. All of this I and chelation and nanopartivle cleanses and ionic foot baths and they’re all abuser gaslighter lost as fuck idiots. Ruin your life and health. Miss my dental career and my kid they killed father and run of every one else. Conventional medical protocol killed everything. And the spiritual damage is totall hell on to many yrs of struggle and survival and grief of other non necessary now dead ppl.
In the news a few years ago: Warren Buffett's wife gets requests from people for financial help. They read through all sorts of letters and choose whom to help. This was about 10 years ago, so I'm not sure if they're still doing this. I think I saw it covered on the PBS Newshour. Maybe if there was a collective effort from the researchers, etc. they could try and contact them. (Or maybe the Bill and Melinda Gates Foundation). I just remember seeing this about the Buffetts on PBS.
It's very simple, chronic fight or fligth (every 'biomarker' is simple a response to this), because of surpressed emotions, trauma and stress. What you do is go to the core beliefs, change those, release your stress. Every single person with ME/CFS had a traumatic or unoptimized childhood, no freaking exceptions. No pill will ever cure this (unless you wanna get on so many anti depressants and you're not severe).
@@me-cfs-strategiesforhealing Yeah but the thing is, I don't think a pill can heal your core beliefs and chronic stress from traumatic events. Did you read Gabor mates when the body says no? It's clear that a lot of things come from childhood trauma. I think solving this core problem will resolve the illness. A magic pill would be 'the easy way out' and people would get alcoholics, depression, maybe even get cancer. A pill is not an answer.
Some people recover from doing that kind of work, others do it for years and don't make recoveries. Once the situation has become more serious, there is so much more going on than just an ANS dysfunction in ME/CFS. Check out my 20 reasons why ME/CFS is not just a hypersensitive nervous system issue video. Personally, I am believer in a multilateral approach. If you can do a mind-body approach and also take a pill for a while, you can then have combined treatments to take you more easily towards recovery.
@@santeenlSaying that every single me/cfs patient had a traumatic childhood without exception is already a very questionable take. Saying 'it's very simple, it's just from suppressed emotions and stress' is just insane. This is not simple at all, trauma is such a high level concept, it can barely defined what this actually means, it's neither possible to quantify or measure it nor prove that it actually causes me/cfs. Everything, even stress and trauma, have underlying biological mechanisms. I'm not saying that you always need to understand every single biological process down to the lowest level to improve your condition, but saying 'it's just chronic fight or flight, change your core beliefs and release your stress' is not only not helpful but probably wrong as well. Most me/cfs patients have tried this strategy and the rate of recovery speaks for itself. Why can't we just admit that we don't really understand most of what is happening in our bodies instead of oversimplifying things just to have some kind of explanation?
Yes, great points. And also the very nature of ME/CFS stresses the nervous system out. For example, low blood volume freaks the brain out and triggers the stress response.
This is incredible! Thanks for posting. Some key points for anybody who wants a summary: • research has found patients with ME have dysfunctional potassium - sodium pumps which are part of the mitochondria of every cell meaning that the cells are becoming flooded with too much sodium which also leads to a build up of calcium. The cell becomes dysfunctional and can’t adjust when a patient exercises, leading to a crash. • Mitodicure are working on developing a pill which will address the faulty pump, making PEM impossible. They hope that if it’s impossible to crash that the body will then be able to heal itself.
Would you condiser this a compeditor to Asha-091? Both very early stage mitochondrial drugs. Both likely to be 15-20 years away, if they work. Both providing a glimmer of hope.
Very interesting to hear what's going on from across the pond .Here in the USA we have Dr David Systrom who has done iCPET testing and found preload failure in those with ME/CFS/POTS He recommends using more salt and compression stockings plus Mestinon ,LDN, Fludrocortisone,midodrine and beta blockers .He believes the preload failure that presents without intrinsic heart or lung disease is caused by autonomic nerve dysfunction ,low blood volume ,mitochondrial issues and even shunting issues . A cure would be nice ..but how many things have an actual cure ? Hope you are feeling OK today Patrick !
Yes, I’m aware of Systrom’s work and klaus Wirth also includes it in his hypotheses. So many vicious cycles ongoing in the illness. Time will tell if mitodicure is powerful enough to reduce the load enough if the body can then heal itself For now we do the best we can
There's some speculation on the phoenix rising forum if you want to search for mitodicure there. Apart from the fact that it will normalise the cellular sodium overload, I don't know. I've looked but not found anything :)
@@me-cfs-strategiesforhealing Lots of vicious cycles ! I was listening to this hour long talk yesterday with Lauren Stiles and Cort Johnson ...and Lauren mentioned GLP and dysautonomia so I looked it up .. GLP ( glucagon like peptide ) is released 10 min after eating ..it activates nerves in the gut ... sympathetic nerves that help control insulin and peristalsis . GLP also sends messages to the brainstem and it can cause tachycardia because it decreases parasympathetic activity .GLP also influences kidney function ,stimulating diuresis and lowering blood pressure ... ....That's interesting and gives a lot of insight into lots of familiar symptom complaints !
Never say never as they say. Its heartbreaking and criminal that so little is invested into research for this debilitating ilness. I hope with all my heart that investment is found especially how taxes etc are so massively wasted by government. Thank you as always for fighting the good fight
Thank you for the kind words It’s unreal how the very sick are just sidelined. If it happened with any other disease with such a severity burden, there would be public outcry What a world
@@me-cfs-strategiesforhealing yes it truly is criminal. Even more so with the undeniable rise after COVID showing it is a real severe illness, yet it is still pushed to the back burner and undermined.
Thanks Patrick, Glad to hear this has helped you with your symptoms. Might sound strange but have you ever tried giving blood on a regular basis? Do you think that could cause a reduction in symptoms as opposed to Apheresis?
Thank you David. No, I haven’t tried that. I’d be scared to given the low blood volume. However I did come across someone (vax injured) who said that she paid a phlebotomist to take blood on a regular basis and that this improved her. Perhaps doing that will reduce the load of some of the microclots and aabs. Also came across someone who lost a lot of blood from an accident. He said he also felt better (once on the mend from the accident). Would you think of trying that?
@@me-cfs-strategiesforhealing yep.. I’ve booked in to start doing this.. I’m in Australia and unfortunately cant test for any of this stuff here.. I figured if there is something in the blood then getting it out wouldn’t hurt.. and counting on my body to replace it with “clean” blood
It seems to have something to do with connective tissue and misbehaving genes ,like the trifecta of diagnosis of Pots , Ehlers-Danlos syndrome and mast cell activation ,it seems to be genetic predisposition activated by epigenetic factors under stress conditions which implicates neurotransmitters, nutritional deficiency by elements of gut dysbiosis which goes in a negative feedback loop by vagus nerve dysfunction and that controls heart,gut brain axis, hormonal feedback axis to the brain, swallowing and even diaphragm dysfunction causing breathing disorders. Of course the conventional doctors are trained on organ pathology and very rarely can they comprehend the organism as a whole and the multisystem pathology that's going on.
Thanks again Patrick for an amazing video. This was an Aha-moment for me almost, I am severely ill in LC/ME since March 2020, but have had back problems my entire adult life (I am 39 now). So I will look into this as well and see if there is an osteopath with Perrin skills in Sweden where I live. Looking forward to hear your progress, and good luck!
@@me-cfs-strategiesforhealing Currently I know I have scoliosis. Sure, I will let you know, but it will take time as I have other medical problems and appointments of higher priority first.
@@me-cfs-strategiesforhealing Thank you! (Ps. My legs are also a bit different in length, as a consequence of a rare hip disease I had as a child. I believe this created scoliosis and back problems later in life).
Very Interesting…When I look back now, my spine was always not quite right in comparison to peers. Perhaps some me/cfs patients have a poor spinal situation which later predisposes them to excessive toxin buildup in brain, triggering of ANS dysfunction and ME
It isn't being marketed as such but one of the autoantibodies it targets, Beta 1, has a role in blocking sodium retention. So BC007 could improve BV by neutralising the effect of Beta 1 AABS. Wirth and Scheibenbogen in the Unifying Hypothesis of ME/CFS paper suggest the RAAS downregulation is occurring because of the following sequence i) illness is characterised by low blood perfusion throughout the body ii) unable to correct this by normal means, body instead releases backup vasodilatory mechanisms, such as bradykinin iii) these backup vasodilatory mechanisms opposed the effects of the RAAS BC007 should improve blood perfusion by a range of actions so that could indirectly lead to better blood volume
My understanding is that both things can be true - the core issue can lie in a subconscious hyper aroused nervous system … that then results in very real physical downstream repercussions, many of which you touched upon. My daughter recovered from severe POTS and a host of other issues (IBS, IC, hair loss, beginning stages of MCS, etc) when she was introduced to and fully embraced the hyper aroused limbic system explanation and slowly worked to retrain her brain. While she is still prone to moderate POTS, IC and other symptoms especially when her body is stressed by things like heat and other factors, it is no where near the debilitating results she once had (bed bound). She now eats what she wants, exercises hard every day, and is leading a normal life. It did not happen overnight, but it’s hard to imagine where she would be today without having made the BRAIN-mind-body connection. That said, I fully agree that any coach who suggests that the physical symptoms are “not real” feels misinformed to me. (PS - a key step for my daughter was breaking her identity away from her illness, while still acknowledging the pain and suffering she experienced through years of very real illness. Again, our experience is that both things can be true.)
Hi Dana, that's wonderful that your daughter has made such progress. I agree that the hypersensitive ANS is the root cause. It then leads to other secondary dysfunctions which then, in turn, feed back into the ANS dysfunction by stressing the brain further. The problem is the claim that the hypersensitive nervous system is the 'only' issue. That's clearly wrong and misleading.
Hello Patrick, great topic! A quick question, prior to starting this diet, have you tried ALC? (Acetyl-L-Carnitine)? If so, did it help you? I just started it...
Thank you for another great video. Your channel is cutting edge! I was gonna order your electrolyte powder from the US, but the shipping was way to costly to Sweden where I live. So I will try another domestic alternative instead...
Oh thank you, I appreciate that! By the way, Normalyte are hoping to be available via Amazon Europe at some point so watch out for that. It's hard to find ORS without a lot of strange additives. Hope you can find something good in Sweden.
I agree that there are real physical issues with the CFS. My experience is that the only thing that worked for me getting better is slowly increasing my activity levels (5 percent). I went from bed bound to being pretty functional (I am still increasing activities) and it did not involve addressing anything else but the nervous system and eating paleo. Also having the belief that I don't need anything else but my own strong mindset is empowering. You can heal yourself, you don't any treatment from any doctor. There are so many people doing Miguel's recovery program doing the same thing. Believe me I have tried many other things and nothing else worked.
I'm very glad you are doing so much better. Yes, many have improved with brain retraining, pacing and slowly increasing activity. It's been of help to me too, even though it hasn't yet got me over the line, and I have needed some other treatments to make essential progress (HELP apheresis in particular). But the claim that is often made that 'there is nothing wrong with you but a hypersensitive nervous system' and 'brain retraining can help you to recover' are two very different claims. I think they are sometimes confused.
@@me-cfs-strategiesforhealing Thanks, after 2 decades of this illness I am stoked that something started working. It is a very confusing condition indeed. It is great that HELP apheresis has helped you. I think they are saying that there is nothing else wrong but the nervous system, because they want to encourage you to do the work (increase activity and react well to symptoms). They want to empower you and create the belief that you can do this on your own and that you don't need to wait for the cure. But the claim that it is only the nervous system isn't true.
I'm so glad the brain retraining is helpful for you and after so long unwell. Perhaps some of the coaches do it for that reason though unfortunately my feeling is that many of them just don't know about the research. Hope to hear that you've made even more progress one day.
I find it helps with anxiety too. And I find it can reduce a lot of nervous system symptoms (not all). But I haven't found it help me to change what's going on in the rest of my body, eg PEM. Not yet anyway.
@@me-cfs-strategiesforhealing I have also tried brain re-training (DNRS) and it did help my Mold issues, but it hasn't helped for the CFS. Now I am doing increasing activity slowly and I went from almost bed bound to be able to do so many things, like cooking, walking the dog, doing a few minutes of exercise, socializing. I went with Toby and after that I went with one of Miguel's people.
Hello Patrick, There are potential issues with following a restrictive diet such as the carnivore diet, especially for someone with CFS/ME. CFS/ME patients often have a variety of nutritional deficiencies, including essential vitamins and minerals like Vitamin C, B12, folate, magnesium, glutathione, and iron. While a carnivorous diet provides ample iron, zinc, B12, and other nutrients, it lacks critical nutrients for CFS/ME patients, such as Vitamin C, B1, folate, and magnesium. These deficiencies can be particularly detrimental and should be addressed with appropriate supplementation if foods high in these nutrients are not consumed. Please keep this in mind to ensure a balanced and supportive nutritional approach. Best regards
Thank you very much. I’m on some magnesium already, and take a light b vitamin complex by ‘time health’. I’m going to add in a little vit c soon. I appreciate you taking the time to make those suggestions.
@@me-cfs-strategiesforhealing Have you checked out the information provided by Dr. James DiNicolantonio about balancing the acid load from eating animal based using bicarbonate/citrate? Btw, manganese and B6 are also often low in CFS/ME due to HPU (Hemopyrrollactamuria). Meat is quite low in manganese.
Yes I had to go carnivore too. It works wonders to heal the gut. I learned brain retraining can't be done without diet and lifestyle too. That Normalye has citric acid from black mold and natural flavors so please be careful with it. I know toxins will flair my POTs and MCAS symptoms.
DNRs almost killed me. I had severe food allergies and they kept telling me it was because I wasn't brain retraining hard enough. They pressured me to eat things I reacted to and it landed me in the ER with a heart attack. You're a good guy. I talked to you years ago when I first got sick via email after I bought your book. Hang in there. I'm still trying to heal too.
I’m so sorry you went through that, that’s absolutely awful. I think that the idea brain retraining could cure all kinds of food sensitivities is totally flawed and dangerously simplistic. Fingers crossed we can both get over the line one day
Unfortunately, there isn't yet. I did ask them. They are working on getting it on Amazon Europe which would mean that the delivery/custom charges would be done with. Suggest subscribing to their list to see when that change happens.
Yes. My stamina is better and I crash less and recover more quickly if I do. My energy is more stable throughout the day. My legs feel lighter. Body and skin composition are better.
Six years. I can often walk 8-10,000 steps per day now on good days, 6-7,000 before starting. It’s hard to put a percentage on it. It is harder to crash and I recover better if I do.
@@me-cfs-strategiesforhealing its a good sign that youre able to do more steps. Im currently experimenting with dry fasting. There is a channel named "thedryfastingclub" and the hosts cleared his long covid with this method. Its tough but im gonna give it a try.
I think I am somewhat hyper mobile and I have wondered about whether I might have those conditions. On my to-do list for the future. At the moment I am getting Perrin/osteo treatments. My spine - particularly thoracic region - is quite rigid
I would have to have complete trust in this as the last time i took an experimental drug (covid vaccine) i had a huge crash and worsening of my condition that havent resolved
Thanks for this video 👍🏻 my biggest issue is brain fog and headaches as my PEM is rather good and I can be quite physical.. have you had headaches/brain fog as one of your symptoms?
Thanks for that study. It can be a bit of a lottery, Other studies show improvement - check out the autoimmune treatment video and immunodsorption patient experience video. Some improve long-term, some temporarily, some not at all.
I think we need to get to causes seems to me that we’ve been damaged by some kind of external force perhaps radiation perhaps energy weapons something has caused damage in harm to our body so that they are not responding normally
Have you already looked into IHHT (intermittent hypoxic hyperoxic training) as an additional treatment option? There is a podcast with Dr. Mercola and Arkadi Prokopov about this topic. Arkadi also has written a short book about this topic (Undoing Lyme Disease: How to Make Your Mitochondria Fight Lyme Borreliosis by Surfing Oxygen Waves).
Congratulations on your health improvements. I didn't hear you mention oxylates, which is the primary problem many people have with chocolate (not just carbs). If you haven't explored the effects of plant oxylates (as well as the hazards of oxylate dumping when you remove them too abruptly), Sally Norton is a leading expert. Wishing you continued progress!
Thank you for the kind wishes and I'm actually just reading Norton's book now! I really want to cut out the chocolate. It has been a bit of a crutch/addiction/coping mechanism. It does me no favours and I'm hoping to try to stop it again soon.
My CFS is not fully severe, but close. I'm medically disabled and mostly housebound. I no longer drive or go anywhere for that matter. I've had CFS for 22 years. I'm an ex-athlete. I'm giving Carnivore a shot - I'm just at the beginning. Thank you for sharing your experiences. I'm hoping to have some positive results. I really want my life back.
Oh wow. I hope this helps you very much. I'm considering it myself and that's how I found your comment. Please let me know how it goes month to month if your able. I know brain fog is so limiting, so no pressure if your not up to it. ☺️ One thing Im prepping to do is 100% carnivore, not 95% like this kind chap. To know if something works or fails, I want to give 100% attention and effort so I can definitively determine it's shortcoming or success correctly. 🎉
