Thank you for this video! 🙂🙏 I completely understand the dark chocolate habit…
@me-cfs-strategiesforhealing9 сағат бұрын
Glad to find someone else who does. I swear they must put cocaine into it! ;)
@me-cfs-strategiesforhealing2 күн бұрын
Update November 2024: Unfortunately BC007 did not pass its phase II trial and the company is closing due to financial constraints. Full details of that trial have not yet been released. This is a very disappointing piece of news - particularly given the early positive results in LC patients and heart failure patients, but kudos at least to the BC007 for trying. It is no easy task to get any medication to market for any illness, let alone LC and ME/CFS
@patrickh52023 күн бұрын
What do you think about the latest news from Berlin cures? "Topline results of Phase 2 Long Covid trial do not show evidence of superior efficacy of BC 007 over placebo arm" i would like to know your opinion about it.
@me-cfs-strategiesforhealing2 күн бұрын
I was very disappointed about it. Some people are saying maybe 30 days wasn't enough to judge the effects of it but I'd have to see the actual trial.
@ingela_injeela11 күн бұрын
I can recommend Kelly Hogan @My Zero Carb Life, and Anita @Ketogenicwoman for women.
@me-cfs-strategiesforhealing10 күн бұрын
Cheers, thank you for the recs
@ingela_injeela11 күн бұрын
Oh, such a device would be invaluable in helping prevent crashes! And it would help with pacing. I hope it becomes available for us ME patients soon!
@me-cfs-strategiesforhealing10 күн бұрын
I fully concur! Peter Deen is doing his best to get this start-up off the ground, always hard with ME/CFS to get funding, but he'll keep fighting on.
@klinikat531311 күн бұрын
BC007 cancelled 😢😢😢😢😢
@me-cfs-strategiesforhealing10 күн бұрын
Oh my, what terribly sad news. I just looked up their update following reading your comment.
@klinikat531310 күн бұрын
@me-cfs-strategiesforhealing yes it is. Big Pharma should invest, but they need profit calcs first = feasibility and unfortunately nothing happens so far.....
@michele032418 күн бұрын
4:58 This is a stretch at best! You're comparing a mouse model to a human without acknowledging the functionality of the prefrontal cortex and personality being stable over time.
@me-cfs-strategiesforhealing18 күн бұрын
There are studies on the role of Muscarinic 4 receptors in addiction in humans too. Yes, we have a prefrontal cortex but that doesn't mean that M4 receptor dysfunction won't effect dopamine signalling in humans and therefore play a role in addiction. Note also that that part of the video was an attempt to inject some humour....
@michele032418 күн бұрын
So glad to hear you found something that helps you! Because the brain is the greediest consumer of glucose and oxygen it's understandable how this may provide short-term and short-lived relief. The correlation between POTS and insulin resistance coupled with the long-term consequences excessive amounts of salt has on the brain, kidneys and heart is why I would hesitate to call the regular use of this to be "safe". However, when comparing this to chronic hypovolemia and hypoperfusion which is 100% unsafe it seems this is the lesser of two evils. I would caution those with Hyperadrenergic POTS to proceed with caution if you don't already know the effect excessive salt has on your BP and bodily systems.
@me-cfs-strategiesforhealing18 күн бұрын
Yes, it is probably the lesser of two evils. I would not want to do it forever but for now, it makes a dramatic difference. In the context of an illness which itself causes salt loss, I often wonder at what point salt replacement might cause kidney problems.
@michele032417 күн бұрын
@@me-cfs-strategiesforhealing Are you referring to Hypovolemic POTS or ME/CFS causing salt loss?
@me-cfs-strategiesforhealing16 күн бұрын
Hypovolemia in both are significantly caused by salt loss due to RAAS suppression, although there are some other reasons for the hypovolemia too.
@michele032419 күн бұрын
13:04 Carbon dioxide is the stimulus for breathing. How do you measure CO2 to know you're actually increasing your CO2? Arterial blood gas is more reliable than a venous puncture and I imagine you're not jabbing yourself while breathing so do you use capnography or another tool that will give you objective data?
@me-cfs-strategiesforhealing18 күн бұрын
I don't measure the CO2 directly but you can use the 'control pause' test to measure current body oxygenation capacity. Patrick McKeown calls this the BOLT test - Body Oxygenation Level Test. Sitting quietly, take a normal breath in and out, hold your nose, count seconds till first urge to breathe. Of course, there are many factors in BOLT scores (for example, low blood volume reduces body oxygenation) beyond just CO2 but it is one of them. Interestingly CO2 has been found to be very low in Long Covid but the breathing patterns do not show the expected level of hyperventilation (for such a low CO2 level) suggesting that the low CO2 in these illnesses is primarily a problem of CO2 production being reduced in the cells rather than overbreathing.
@marcosjimenez704620 күн бұрын
You are only at risk if you take high doses for a long time. Keep it at 5G and you’ll be fine 👍
@me-cfs-strategiesforhealing18 күн бұрын
Thanks for the tip
@DaddyDFL22 күн бұрын
I've been on carnivore for 2 months. But have a friend with long covid so found this. One of the reasons for carnivore is to suppress insulin levels, which leads to much of the negative sequlea of common diets. Have your MD regularly check fasting insulin levels. If it's still elevated, then the chocolate and other sources of glucose may be working against you. Looking forward to further updates.
@me-cfs-strategiesforhealing18 күн бұрын
Thank you for the helpful advice. I agree that neither are ideal but the ORS is very helpful for quality of life at present and the chocolate....I'm a bit of a hopeless case but hopefully I'll drop it at some point.
@bebopsi27 күн бұрын
Does anyone know where in the US these can be done?
@nathancoulter599527 күн бұрын
So after 3 weeks carnivore strict with 70 percent fat being in my macros I felt much better however my heart rate was generally running higher than when I was on carbs. This is because of the body running on stress hormones which is apparently hard on the adrenals and “fools gold” in terms of energy. I decided to stop it and started animal based however energy and mood still best on carnivore. Have you looked into this side affect of carnivore or experienced it ? Body being in a much more stressed state without having carbs
@me-cfs-strategiesforhealing18 күн бұрын
Yes, I am aware of that problem but I'm not sure how to fix it. I'd assume higher fat but it seems your diet already was high in fat.
@nathancoulter599527 күн бұрын
Hello, new to your channel and after trying various diet methods have settled on animal based. I’d be curious have you done any research into mold mycotoxins as being the cause of this ? I have a naturopathic dr telling me this is all mycotoxin related, I fell ill with sinus issues and fatigue last November. Curious to hear your thoughts
@me-cfs-strategiesforhealing18 күн бұрын
I haven't no, apart from recognising that mold can be a problem for many. Dr. Neil Nathan has a recent book all about mold. I notice that I feel worse in mouldy houses.
@rizs199528 күн бұрын
Any "new" treatment for cronic joint pain ? No autoimmun disease, no joint wear (mri, xray show nothing) 1+ year pt, pain/burn in almost every joint in my body.
@klinikat5313Ай бұрын
There is BC 007 in phase 2 trial !!!
@me-cfs-strategiesforhealingАй бұрын
Waiting patiently!
@alexander_3923Ай бұрын
I don’t understand why people keep bringing antibodies in pots they already did a study where they compared antibodies of adrengeric receptor in patients with pots and healthy control and there was no significant difference between both so autoimmune most like has nothing to do with pots
@me-cfs-strategiesforhealingАй бұрын
Check out my video titled something like 'autoantibodies: no big deal' (published around the same time as this one) for counterarguments to your comment.
@AnnikaPostVacАй бұрын
I have MECFS from the COVID vaccine im bedbound now for 4 Months im 25 years old from Germany
@SZ-ed2gtАй бұрын
You can find a presentation of Prof. Klaus Wirth here: " Prof. Klaus Wirth - Vortrag auf der ME/cfs - Fachtagung 2024 " Fagitatio e.V. ME/cfs - Fachtagung in Fulda Germany Sorry, in german.
@peytnshaddinger6140Ай бұрын
I have been on T3 for 3 1/2 years and I have become more and more ill. My TSH is always extremely suppressed and now my cortisol is tanked. I am also weaning off, but having a very hard time with fatigue.
@me-cfs-strategiesforhealingАй бұрын
Best of luck with the tapering. I found it very hard as well. 'Slowly does it' was my mantra for getting off it. I haven't retested my thyroid labs and cortisol since stopping T3 five months ago but I plan to next month. I can feel my cortisol back in action again thankfully and I never want to lose that feeling again.
@thecaliforniacarnivoreАй бұрын
Ketovore helped me lose the weight I gained after CFS. I'm hoping carnivore will help me recover more fully. 27 days into a 30 day challenge. No huge changes yet, but I'm definitely going another 30 days.
@mitchfishesАй бұрын
I swapped the chocolate for pork scratchings, worked a treat 👍🏻
@elizagray1397Ай бұрын
I have seen experts and still got invalidation.
@me-cfs-strategiesforhealingАй бұрын
They often do sadly. It's been the story for me too, even when I was experiencing life-threatening episodes caused by ME.CFS
@DanielleLegacyАй бұрын
This was so helpful, thanks! So, if we get these specific hormones tested and they're low... what then? Is there a treatment? Not that we want synthetic hormone replacement.
@DanielleLegacyАй бұрын
Thanks so much for sharing! I've steered away from electrolytes with sugar bc I didn't know it was beneficial. I'll try this out.
@me-cfs-strategiesforhealingАй бұрын
You are welcome Danielle. In relation to this and the other question, really I find Oral Rehydration Solution the most helpful treatment - mainly drinking it rather than normal water (for the most part). I add around four grams normal salt daily also to my food (in total, two grams to each of my two meals). Some people take Flurinef (a synthetic hormone which replaces aldosterone).
@zashuiva7324Ай бұрын
Thanks for sharing. This seems extremely promising!!! fingers crossed.
@ericjohnson624Ай бұрын
Not sure where you are based. Did you do any testing for micro clots prior to deciding to do HELP? I have neuro injury due the vaccine going on 3 years now. Looking at traveling to Germany to see if it helps… but not sure micro clots are my issue
@me-cfs-strategiesforhealingАй бұрын
Hi Eric, unfortunately testing for microclots not available - I believe - apart from Pretorius' lab in South Africa and Jaeger's in Germany. Look at some of my other videos about microclots (published around same time as this one). Darker blood in a test tube, drawn from upper arm, and a very low ESR rate may be clues. Good luck
@ChristineParkinson-ek1llАй бұрын
Have you heatd of the DecodeME study
@me-cfs-strategiesforhealingАй бұрын
I have indeed but I haven't studied it in detail
@ChristineParkinson-ek1llАй бұрын
@@me-cfs-strategiesforhealing thankyou for your reply. I have m.e and fibromyalgia and autoimmune hepatitis. Is fibromyalgia and m.e an autoimmune disease!! It's been an horrendous 10 years with these 3 diseases ....I absolutely pray for some treatment 🙏 I'm so glad I found your channel
@me-cfs-strategiesforhealingАй бұрын
Hi Christine. ME/CFS autoimmunity is different from other illnesses. The body is not attacking itself but the autoantibodies are instead blocking various functions to further heighten ME/CFS pathomechanisms. Not everybody with ME/CFS has the autoantibodies and, among those that do have them, the degree will be different. Testing can be done via cell trend lab (see my video on testing) though that is a little tricky if outside of Germany (though not impossible). So in ME/CFS, autoimmunity is best thought of as a secondary dysfunction that can be brought on by the illness and make the overall situation additionally worse, but the degree to which it does this will depend on person to person.
@ChristineParkinson-ek1llАй бұрын
Hello new here M.E for 10 years. THANKYOU SO SO MUCH. JUST FOR THIS CHANNEL AND INFO. I have fibromyalgia too Autoimmune hepatitis along with m.e - All diagnosed same week in 2014. Does this mean i have 3 Autoimmune diseases please!?
@me-cfs-strategiesforhealingАй бұрын
Hi Christine. ME/CFS autoimmunity is different from other illnesses. The body is not attacking itself but the autoantibodies are instead blocking various functions to further heighten ME/CFS pathomechanisms. Not everybody with ME/CFS has the autoantibodies and, among those that do have them, the degree will be different. Testing can be done via cell trend lab (see my video on testing) though that is a little tricky if outside of Germany (though not impossible). So in ME/CFS, autoimmunity is best thought of as a secondary dysfunction that can be brought on by the illness and make the overall situation additionally worse, but the degree to which it does this will depend on person to person.
@DanielleLegacyАй бұрын
My question: how do we know that the sodium/potassium pump dysfunction is what's causing PEM?
@me-cfs-strategiesforhealingАй бұрын
That's a great question, Danielle. It's not definitively proved yet. In fact, as Wirth's pill would be correcting the dysfunction, it the response to the pill that can ultimately prove the theory one way or the other. What we do know however is that high intracellular sodium is an issue in ME/CFS and a dysfunctional sodium-potassium pump will be the reason for that. If we have have intracellular sodium, then you tend to get high intracellular calcium as well and that makes the cells even more dysfunctional and the muscles more painful. So the pill would potentially correct the high intracellular sodium and resulting high intracellular calcium.
@DanielleLegacyАй бұрын
@me-cfs-strategiesforhealing okay, gotcha. My understanding was that the muscle burning was caused by acidosis. Ron Davis' crew believes the problem is a shunted Krebs cycle. They say the resulting anaerobic metabolism is to blame for the acidosis. Is the mitodicure group's theory opposed to Ron Davis' research, or do they believe this potassium/sodium pump issue is just adding to the muscle pain? Thanks so much for the response!
@me-cfs-strategiesforhealingАй бұрын
Indeed, Wirth includes the acidosis part. The sodium-potassium pump issue is just one part of the cycle of dysfunctions at a cellular level but, for Wirth, the most important one to target. There is a KZbin channel for The Irish ME Trust (channel is called 'ME Ireland'). There you can find a talk I gave in January of this year (titled something like 'ME/CFS and hypoperfusion'). That outlines a bigger picture view of Wirth's research and where the cellular issues fit in. Interestingly Davis also suggested the excessive cellular stress of ME cells in response to a hypertonic solution as a biomarker for ME/CFS. That ties in with the idea of high intracellular sodium being at play.
@DanielleLegacyАй бұрын
@me-cfs-strategiesforhealing thanks so much for the response! I'll definitely look up that video.
@DanielleLegacyАй бұрын
So, how do we volunteer to be in the trials? I'm in the US. I know this is wishful thinking, but thought I'd ask anyway.
@me-cfs-strategiesforhealingАй бұрын
Hi Danielle. It needs to be funded first and then there may be some announcement about trials. However Wirth is connected to Charite University Berlin which has a lot of ME/CFS patients. My guess is that that would be the cohort used (but I don't know)
@carnivore-muscleАй бұрын
Thanks for sharing, also a sufferer
@me-cfs-strategiesforhealingАй бұрын
You're welcome
@sci2021Ай бұрын
Does D-Ribose mainly resolve cognitive issues during a crash?
@me-cfs-strategiesforhealingАй бұрын
More the muscle PEM and aches in my experience.
@joredfearn1Ай бұрын
Thanks so much for using some of your precious energy to create this and share. Really positive news. Actually gave me goosebumps / nearly made me cry when you spoke about the pill's projected mechanism resulting in PEM being impossible. And therefore taking that stress of the body to actually heal. Imagine!!! Let's manifest this!
@me-cfs-strategiesforhealingАй бұрын
Thank you very much! Likewise, this is the pill is what gives me the greatest hope. But, as always, ME/CFS and money for funding is tricky to come by. But let's indeed manifest it and if you happen know of any billionaires, maybe mention it to them!
@sarahmcdonald7Ай бұрын
@ladygaga
@MaxPayne-fi1mzАй бұрын
Hi. Have you heard the update about BC007?
@me-cfs-strategiesforhealingАй бұрын
Unfortunately not
@MaxPayne-fi1mzАй бұрын
@@me-cfs-strategiesforhealing They're going to give their results in November in a Long Covid Conference. Seems unlikely to have completely negative results if they're going to present their findings in a Conference?
@me-cfs-strategiesforhealingАй бұрын
That seems likely
@angelbryan982 ай бұрын
Hello Patrick. Can you look at the Itaconate shunt hypothesis by Rob Phair and Ron Davis? It's pretty interesting and may explain ME/CFS once and for all.
@me-cfs-strategiesforhealingАй бұрын
I've looked at it a bit before Angel. Might do a video on it some day but my feeling is that it is one just one dysfunction among many inter-related dysfunctions
@IZombi-mx9ls2 ай бұрын
I was on carnivore 8 months (4 on keto before) didn't help at all with my LC actually I had to stop because I felt worse and worse.
@svenker12 ай бұрын
Short dry fast clear(desolve) glycated proteins in the body
@me-cfs-strategiesforhealing2 ай бұрын
Thank you for sharing.
@thecaliforniacarnivore2 ай бұрын
I'm on day three of my transition from keto to carnivore. I'm actually doubtful it will work, but committed to 30 days! We shall see!
@me-cfs-strategiesforhealing2 ай бұрын
Best of luck! I'd be interested to hear how you get on.
@mikeostrander54062 ай бұрын
Yes , men and women are the same species. However bodies are obviously different. Hormones , testosterone levels, menses etc .
@me-cfs-strategiesforhealing2 ай бұрын
Yes but the context of my remark is about Ribose specifically. I find it hard to believe that women would only produce 2 grams of Ribose daily and men 18 grams, given how crucial ribose is in creating ATP, the body's energy currency molecule. So I'm not sure that the Norwegian booklet I read can be right.
@Idyllll2 ай бұрын
Thank you for sharing your knowledge and experience. As we are in September, I'd love an update video on how you are doing without the T3? Where your levels are at? How you are supporting your thyroid?
@me-cfs-strategiesforhealing2 ай бұрын
I plan to do that video in the future but hard at work on a book at the moment. I'll be getting my full thyroid labs (and cortisol) this autumn and I'll include those. I think I'm doing okay thyroid wise. I might be a bit hypo but I don't think anywhere near as bad as I was some years ago. And I think I am doing well with my cortisol again, pending labs.
@Idyllll2 ай бұрын
@@me-cfs-strategiesforhealing Thanks for the reply. Glad to hear you're better than you were before. Hopefully your labs reflect the changes. Look forward to your future video. I hope you can include dietary, supplement and meds that helped you.
@me-cfs-strategiesforhealing2 ай бұрын
You are welcome and thank you. I'm a carnivore these days which I find helpful (have a couple of videos on that).
@LillyLbs2 ай бұрын
Hello , I live in Germany . I has EBV and maybe long covid , CFS, I ve tested my mitochondrie and there are no optimal functional . I would like know more about that. I hear many thing about treatements, clinical try... but nothing come. It s always hope and disapointed, ex : IVIG, BC007 , Bruce Patterson protocol.... When come all this thing ? Are there still clinical try. Can I in contact with Herr Klaus or a clinical ? Best regard
@me-cfs-strategiesforhealing2 ай бұрын
Unfortunately, Klaus Wirth still needs funding for a trial. Keep an eye on Mitodicure's website for updates.
@SZ-ed2gtАй бұрын
Es gibt keine Behandlung bis zum Abschluss der Phase 3. Es wird 5 bis 10 Jahre dauern bis alle gesetzlichen Vorgaben für neue Medikamente erfüllt wurden. Es ist eine großartige Nachricht, dass ein Pharma Gigant wie Sanofi Millionen in dieses Medikament investiert. Aber bis dahin gibt es keine Option behandelt zu werden. Tut mir leid. Das Gute ist, wenn das Medikament funktioniert, wird es eine Methode geben, dass Patienten und zukünftige Opfer dieser grausamen Erkrankung eine teils oder vollständig wirkende Behandlung bekommen. Alles erdenklich Gute für alle ME/cfs Patienten.
@JB-ip7vr2 ай бұрын
How long did it take to start seeing a difference in your energy levels?
@me-cfs-strategiesforhealing2 ай бұрын
Around two weeks. And then again a few months in.
@JB-ip7vr2 ай бұрын
@@me-cfs-strategiesforhealing how many months exactly would you say? After the 2 weeks in what way did you feel better? More energy? Less waves of feeling ill and tired?
@me-cfs-strategiesforhealing2 ай бұрын
3 months. After the two weeks, my legs felt lighter. I could do 8,000 steps per day rather than 6.000. Crashes lasted half as long.
@mark28172 ай бұрын
Thank you for an interesting report on your journey. My son has had long covid for the last 2 years and describes many of the symptoms you have and a whole lot longer list. I would love him to try the carnivore diet but alas he is a card carrying vegan 😢 I hope this diet keeps working for you.
@me-cfs-strategiesforhealing2 ай бұрын
Thank you Mark for the kind words. I'm sorry to hear about your son having Long Covid. The vegan mindset is hard to break free from. There is a KZbinr - Ribeye Rach - who was very severe with POTS and who is doing very well now thanks to a mixture of brain retraining and carnivory. Also someone called Rebekah Heishman whose story of recovery is very powerful (I'm pretty sure she had ME amongst everything else) I'm giving a talk to the Irish ME Trust in a few days - which should be posted on their YT after (channel is called 'ME Ireland') - about why carnivory might help ME/CFS. I don't know if your son might be open to looking at those resources or not but just thought I'd mention in case. Positive examples of people improving can be more inspiring than anything else.
@jipa38832 ай бұрын
Hello buddy are you ok? Hope everything is ok!
@me-cfs-strategiesforhealing2 ай бұрын
Thank you JP, that's kind of you! Yes, I'm fine. I haven't posted any videos in a while as I am working on a book about ME/CFS. I hope it will be out by November and - after a bit of a break - I'll be back on KZbin
@jipa38832 ай бұрын
@@me-cfs-strategiesforhealing oh that's great to hear! Wishing you goodluck with the writing! 👍
@me-cfs-strategiesforhealing2 ай бұрын
Thank you JP!
@simonpkershaw2 ай бұрын
Further, just listening to mr Wirths 2023 presentation….does this guy know that he is talking about the key to most of the mechanisms behind long covid, does he know the spike protein appears primarily toxic to endothelial cells? Correction yes he does!!
@simonpkershaw2 ай бұрын
Thanks for pointing me at this, it does sound like an interesting approach that demands further funding, getting a drug created is one thing but it’s entirely a different league to get it through trials and approval, patients funding it is nowhere near adequate. I’m thinking about the funding though, there are people looking for this because another line of lucrative drug is in trouble!!!!
@me-cfs-strategiesforhealing2 ай бұрын
That's exactly the problem - the funding. Perhaps in any other illness, it would be a different story, but it is just hard to get the money in ME/CFS. It would help with post-Covid ME/CFS as well (and of course post 'poke in the arm' ME/CFS) so perhaps emphasising the Long Covid aspect more would help him in trying to find the funding.
@MaxPayne-fi1mz2 ай бұрын
Hi. Do you have POTS?
@me-cfs-strategiesforhealing2 ай бұрын
No. My diastolic BP goes higher when I stand up though but that can happen in ME/CFS.
@@me-cfs-strategiesforhealingBecause POTS is defined by an abnormal increase in HR upon becoming upright in the absence of orthostatic hypotension can you please clarify why you're using your BP as an indicator as to whether or not you have POTS?
@me-cfs-strategiesforhealing18 күн бұрын
'No' was the answer to the POTS question. The rest of my comment was providing some information about the kind of orthostatic intolerance I nevertheless experience as part of my ME/CFS.