Understanding ME-CFS
Understanding ME-CFS
  • Видео 81
  • Просмотров 101 303
Introducing a continuous crash/PEM monitor for ME/CFS and Long Covid (just like a CGM for Diabetes)?
When you have ME/CFS ( Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.), pacing is not an easy skill to master. There are just so many variables that could contribute to a crash/post-exertional malaise. But what if there could be a device that could take the guesswork out of pacing? In this video, I introduce a Dutch start-up company, Streasure4Health, which is setting out to create a continuous post-exertional malaise monitoring device for Long Covid and ME/CFS. I’ll talk about how it will work and why it might help, not just patients with their quality of life but also how it might change the whole dynamic around ME/CFS in the medical profession. This video is also relevant for Lo...
Просмотров: 580

Видео

INVALIDATION when you have ME/CFS, Long Covid: How to Cope Better and Remain Strong
Просмотров 2512 месяца назад
When someone has a chronic illness, it is natural to seek validation for one’s illness from friends and family. However, because of widespread ignorance about the research into ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.) and its potentially devastating nature, ME/CFS (and Long Covid) patients can experience a lot of invalidation from people - both close-relations - and societ...
Can ME/CFS lead to SCHIZOPHRENIA? Really MIND-BLOWING Research.....
Просмотров 1792 месяца назад
On the face of it, you wouldn’t expect schizophrenia and ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) to have much in common. However, recent research has uncovered some strong possible links between the two conditions, links that actually force the questions: can ME/CFS actually lead to schizophrenia? And, in fact, is what we call ‘schizophrenia’ simply a misreading of the per...
The BIG RISK of T3 Thyroid Treatment: Why I Decided to Come Off Liothyronine
Просмотров 1412 месяца назад
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) patients sometimes also develop hypothyroidism, but not of the standard kind. ‘Low T3 Syndrome’ is a hypothyroid state characterised by excessive amounts of the inactive ‘reverse T3’ (rT3) and an inadequate activity among T3 cellular metabolism. In this video, I describe this kind of hypothyroidism, why it might be happening in illne...
The Big DEMENTIA risk of D-Ribose? Pros and Cons of the Supplement
Просмотров 1,1 тыс.2 месяца назад
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. This video is also relevant for Long Covid and POTS. My name is Patrick Ussher and I am an ME/CFS patient. I have written a book on POTS and also about thirst in ME/CFS, POTS and Long Covid. Personal website (including details about consultations service): www.patrickussher.com My (free) book on thirst in ME/CFS, POTS, LC: www.themythofprima...
A drug to CURE ME/CFS (and Long Covid) one day? Introducing MITODICURE!
Просмотров 3 тыс.3 месяца назад
As of yet, there is no ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) specific drug. Rather only repurposed medications. That could change thanks to the amazing work of Prof. Klaus Wirth who has identified a compound that could make Post-Exertional Malaise IMPOSSIBLE. And if PEM is impossible, the physiological burden could be lowered so much that healing becomes possible (and th...
My experience with OSTEOPATHY for ME/CFS and why it might help (Perrin technique)
Просмотров 2963 месяца назад
On the face of it, you wouldn’t expect ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) to involve issues with the spine. After all, it is an illness of exercise intolerance where limited muscular blood perfusion lowers the anaerobic threshold and makes it hard to exercise along with post-exertional malaise if you do too much. But nevertheless it seems that there is a typical spina...
Why ME/CFS is not just 'a hypersensitive nervous system issue' (short explainer)
Просмотров 2723 месяца назад
Explained: Why ME/CFS is Not Just a ‘Hypersensitive Nervous System Issue’ Some ME/CFS recovery coaches make the claim that Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, is simply a ‘hypersensitive nervous system issue’. That is to say, that the only abnormality in ME/CFS is supposedly a dysregulation of the autonomic nervous system and a hyperactivation of the fight, flight...
Low Blood Volume in ME/CFS and Long Covid (Short Explainer)
Просмотров 2983 месяца назад
Explained: Low Blood Volume in ME/CFS and Long Covid Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, is characterised by its exercise intolerance and resulting episodes of post-exertional malaise. But did you know that one of the main reasons for these characteristic symptoms is that ME/CFS patients often have significantly less blood than a healthy person? While in some pati...
Daily Eating on Carnivore Diet (healing from ME/CFS)
Просмотров 6003 месяца назад
What I eat in a day on a 95% carnivore diet as part o my efforts to improve from ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). Learn about my love for very fatty ground beef, eggs and cod livers! And what I spend on food for the day. This video is also relevant for Long Covid and POTS. TIMESTAMPS 1:08 Fatty ground beef is foundation (40%!!!) 4:30 whole day of eating 7:55 the pr...
ME/CFS Consultations Service
Просмотров 1643 месяца назад
Over the years, I've been regularly contacted for support in relation to ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). I've now decided to offer a formal service for this, usually via voice message. In this video, I break down how it works, how much it usually costs, the kind of topics I can discuss with people and why you might wish to work with me. This service is also releva...
Natural healing of AUTOIMMUNITY in ME/CFS, Long Covid? Here's why it could be possible.....
Просмотров 3683 месяца назад
A key secondary component of chronic fatigue syndrome / myalgic encephalomyelitis (ME/CFS) involves excessive functional autoantibodies. These autoantibodies are capable of blocking core bodily processes, and contributing to exercise intolerance, post-exertional malaise and crashes. Treatments like immunoadsorption or the up-coming Berlin Cures can likely treat this autoimmune problem, but we s...
Autoimmunity in ME/CFS, Long Covid: No Big Deal?
Просмотров 1694 месяца назад
Functional autoantibodies seem to play an important secondary role in illnesses like Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), POTS and Long Covid, with one paper showing that symptom severity in ME/CFS correlates with presence and quantity of autoantibodies. However, there is some research to indicate - as well as anecdotal evidence from patients - that these functional an...
Autoimmunity in POTS: How does it work?
Просмотров 1944 месяца назад
Functional autoantibodies against G-Protein Coupled Receptors seem to be common in ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid and contribute to the symptoms of both conditions. But are these same autoantibodies also common patients with Postural Orthostatic Tachycardia Syndrome (POTS)? The answer seems to be ‘yes’ and in this video we’ll talk about a paper that...
GAME-CHANGING treatment for ME/CFS, Long Covid patients? All about Berlin Cures 007
Просмотров 1,4 тыс.4 месяца назад
Both ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) patients & Long Covid patients are excited about the upcoming Berlin Cures 007 treatment. Many believe this could be a game-changing/breakthrough treatment for patients with these conditions and one which could improve quality of life substantially (or better than that). BC007 is an infusion which uses an ‘aptamer’ drug in order t...
Immunoadsorption Patient Experiences: ME/CFS, Long Covid
Просмотров 4054 месяца назад
Immunoadsorption Patient Experiences: ME/CFS, Long Covid
Treating Autoimmunity in ME/CFS, Long Covid with Immunoadsorption: All the details!
Просмотров 4945 месяцев назад
Treating Autoimmunity in ME/CFS, Long Covid with Immunoadsorption: All the details!
Autoimmunity Test for Long Covid and ME/CFS (How to & My Results!)
Просмотров 3515 месяцев назад
Autoimmunity Test for Long Covid and ME/CFS (How to & My Results!)
Autoimmunity in ME/CFS and Long Covid
Просмотров 4,6 тыс.5 месяцев назад
Autoimmunity in ME/CFS and Long Covid
Immunoadsorption, HELP apheresis for ME/CFS, Long Covid: Patient Interview and Experience
Просмотров 3995 месяцев назад
Immunoadsorption, HELP apheresis for ME/CFS, Long Covid: Patient Interview and Experience
Dryness in Long Covid & ME/CFS: The Role of M3 Autoantibodies
Просмотров 1375 месяцев назад
Dryness in Long Covid & ME/CFS: The Role of M3 Autoantibodies
How am I Doing Now? Recovery Efforts Update from ME/CFS (relevant for Long Covid also)
Просмотров 2705 месяцев назад
How am I Doing Now? Recovery Efforts Update from ME/CFS (relevant for Long Covid also)
Carnivore Diet for ME/CFS, Long Covid: My One Month Update
Просмотров 3,8 тыс.5 месяцев назад
Carnivore Diet for ME/CFS, Long Covid: My One Month Update
DEBUNKING the idea that ME/CFS, Long Covid are *JUST* Nervous System Issues
Просмотров 3,3 тыс.5 месяцев назад
DEBUNKING the idea that ME/CFS, Long Covid are *JUST* Nervous System Issues
Muscle Damage in Long Covid, ME/CFS? Brilliant New Research Finds Muscle Fibre DEATH in Long Covid
Просмотров 3616 месяцев назад
Muscle Damage in Long Covid, ME/CFS? Brilliant New Research Finds Muscle Fibre DEATH in Long Covid
5 Reasons for BRAIN FOG in Long Covid and ME/CFS: Brilliant, New Research
Просмотров 4,9 тыс.6 месяцев назад
5 Reasons for BRAIN FOG in Long Covid and ME/CFS: Brilliant, New Research
Successful Drug Treatment for Microclots in Long Covid, ME/CFS: Study Breakdown
Просмотров 4116 месяцев назад
Successful Drug Treatment for Microclots in Long Covid, ME/CFS: Study Breakdown
A BASIC blood test for MICROCLOTS in Long Covid and ME/CFS? A test any MD/GP can order....
Просмотров 2536 месяцев назад
A BASIC blood test for MICROCLOTS in Long Covid and ME/CFS? A test any MD/GP can order....
Young, Severe ME/CFS Patient Currently Sectioned - Please Sign Petition
Просмотров 1546 месяцев назад
Young, Severe ME/CFS Patient Currently Sectioned - Please Sign Petition
Smaller adrenal glands?! A Neglected Research Finding in ME/CFS (relevant also for Long Covid)
Просмотров 1,4 тыс.6 месяцев назад
Smaller adrenal glands?! A Neglected Research Finding in ME/CFS (relevant also for Long Covid)

Комментарии

  • @ericjohnson624
    @ericjohnson624 9 часов назад

    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

  • @ChristineParkinson-ek1ll
    @ChristineParkinson-ek1ll 18 часов назад

    Have you heatd of the DecodeME study

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 17 часов назад

      I have indeed but I haven't studied it in detail

    • @ChristineParkinson-ek1ll
      @ChristineParkinson-ek1ll 16 часов назад

      @@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-strategiesforhealing
      @me-cfs-strategiesforhealing 15 часов назад

      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-ek1ll
    @ChristineParkinson-ek1ll 18 часов назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 17 часов назад

      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.

  • @DanielleLegacy
    @DanielleLegacy День назад

    My question: how do we know that the sodium/potassium pump dysfunction is what's causing PEM?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 17 часов назад

      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.

    • @DanielleLegacy
      @DanielleLegacy 16 часов назад

      @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-strategiesforhealing
      @me-cfs-strategiesforhealing 15 часов назад

      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 RUclips 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.

  • @DanielleLegacy
    @DanielleLegacy День назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 17 часов назад

      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-muscle
    @carnivore-muscle День назад

    Thanks for sharing, also a sufferer

  • @sci2021
    @sci2021 4 дня назад

    Does D-Ribose mainly resolve cognitive issues during a crash?

  • @joredfearn1
    @joredfearn1 4 дня назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 4 дня назад

      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!

  • @sarahmcdonald7
    @sarahmcdonald7 4 дня назад

    @ladygaga

  • @MaxPayne-fi1mz
    @MaxPayne-fi1mz 4 дня назад

    Hi. Have you heard the update about BC007?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 4 дня назад

      Unfortunately not

    • @MaxPayne-fi1mz
      @MaxPayne-fi1mz 4 дня назад

      @@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-strategiesforhealing
      @me-cfs-strategiesforhealing 3 дня назад

      That seems likely

  • @angelbryan98
    @angelbryan98 7 дней назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 4 дня назад

      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-mx9ls
    @IZombi-mx9ls 7 дней назад

    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.

  • @svenker1
    @svenker1 8 дней назад

    Short dry fast clear(desolve) glycated proteins in the body

  • @thecaliforniacarnivore
    @thecaliforniacarnivore 9 дней назад

    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!

  • @mikeostrander5406
    @mikeostrander5406 11 дней назад

    Yes , men and women are the same species. However bodies are obviously different. Hormones , testosterone levels, menses etc .

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 11 дней назад

      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.

  • @Idyllll
    @Idyllll 12 дней назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 11 дней назад

      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.

    • @Idyllll
      @Idyllll 11 дней назад

      @@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-strategiesforhealing
      @me-cfs-strategiesforhealing 11 дней назад

      You are welcome and thank you. I'm a carnivore these days which I find helpful (have a couple of videos on that).

  • @francaisediesachsenliebtsa8679
    @francaisediesachsenliebtsa8679 12 дней назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 12 дней назад

      Unfortunately, Klaus Wirth still needs funding for a trial. Keep an eye on Mitodicure's website for updates.

  • @JB-ip7vr
    @JB-ip7vr 13 дней назад

    How long did it take to start seeing a difference in your energy levels?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 13 дней назад

      Around two weeks. And then again a few months in.

    • @JB-ip7vr
      @JB-ip7vr 13 дней назад

      @@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-strategiesforhealing
      @me-cfs-strategiesforhealing 12 дней назад

      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.

  • @mark2817
    @mark2817 17 дней назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 16 дней назад

      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 RUclipsr - 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.

  • @jipa3883
    @jipa3883 19 дней назад

    Hello buddy are you ok? Hope everything is ok!

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 19 дней назад

      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 RUclips

    • @jipa3883
      @jipa3883 19 дней назад

      @@me-cfs-strategiesforhealing oh that's great to hear! Wishing you goodluck with the writing! 👍

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 19 дней назад

      Thank you JP!

  • @simonpkershaw
    @simonpkershaw 24 дня назад

    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!!

  • @simonpkershaw
    @simonpkershaw 24 дня назад

    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-strategiesforhealing
      @me-cfs-strategiesforhealing 24 дня назад

      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-fi1mz
    @MaxPayne-fi1mz 25 дней назад

    Hi. Do you have POTS?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 24 дня назад

      No. My diastolic BP goes higher when I stand up though but that can happen in ME/CFS.

    • @MaxPayne-fi1mz
      @MaxPayne-fi1mz 13 дней назад

      @@me-cfs-strategiesforhealing Heart rate remains normal?

  • @simonpkershaw
    @simonpkershaw 25 дней назад

    Hi Patrick, thanks that sounds really interesting. Having been incredibly fit and competing in cycling, I had a very adverse reaction within 20 mins of a AZ vaccine in 21, I’ve been thru all shades of hell since and still not working, but I still meet all the NICE criteria for ME, getting no where with dr on any front but what has helped is recognising that some physical and cognitive things cause crashes and not crashing through pacing has improved things a lot. I have had to become very knowledgeable in order to brief the enquiry module4 with support groups and am very aware of work by Prof Carmen Scheibenbogen showing similarities of ME & LC and other similarities with Lyme. I thought this was going to be another angle on heart rate variability which I’m familiar with, I’ll contact the company so I’m on there email list, this sounds well worth trying when available. Many thanks

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 25 дней назад

      Glad you found it of interest, Simon. Yes, it is a different take on a pacing monitor alright. Personally, I think Scheibenbogen and Wirth have worked it out. It takes a bit of effort to get your head around their ideas but, once you do, I think that is what ME/CFS basically is (though there will be variations around the edges in people). You might find my 'drug to cure ME/CFS' video interesting if you have not seen it already.

    • @simonpkershaw
      @simonpkershaw 25 дней назад

      @@me-cfs-strategiesforhealing thanks for the heads up, I’ll take a look

  • @OCDRecovery
    @OCDRecovery 27 дней назад

    Glad you’ve decided to do this! You are one of the most knowledgable on the subject. Best of luck!

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 27 дней назад

      Ah thank you, I'm touched by those kinds words! Do you think you ever might like to chat about your own personal story on my channel by the way? With the Stoicism angle as well as how challenging your journey has been, I think it could be a very interesting chat for people. No worries though if it is not something you want to be out in the public domain about, but just thought I'd suggest it. I'm hoping to do interviews of people later in the year. My head is down at the moment on working on a book about ME/CFS

  • @Ne0ConKiller
    @Ne0ConKiller 28 дней назад

    Fantastic summary, thank you for sharing. I am trying d ribose as my last resort before going back to a carnivore diet, as the diet works but I hate doing it and it has some side effects.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 27 дней назад

      And thank you for the kind words! I've actually been struggling more recently since giving up Ribose altogether so I've decided to take 5 grams a day for a while. It is making a helpful difference and, at that dosage, I think it is more likely to be okay. Hope so anyway! I'm not carnivore at the moment (was for 5 months) but hope to go back to it next month. Hope Ribose works out for you.

  • @lando2755
    @lando2755 28 дней назад

    How long have you been on carnivore diet and are you still on it?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 28 дней назад

      I was carnivore for five and a half months (until five weeks ago). I hope to go back onto it in October.

    • @lando2755
      @lando2755 28 дней назад

      How much would you say it helped?

    • @lando2755
      @lando2755 28 дней назад

      @@me-cfs-strategiesforhealing also did you still drink coffee or eat anything else?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 28 дней назад

      I had much more stable energy throughout the day, maybe only needing to rest 15 minutes after lunch (unless in PEM). My stamina was noticeably better and PEM lifted more quickly. Mood was better though still low at times. I've definitely noticed a drop off in my functionality since I stopped doing it. I was 95% carnivore. I still had one cup decaf coffee and four squares dark chocolate per day. The chocolate messed things up a fair bit and I want to cut that out too.

  • @TheSooz2008
    @TheSooz2008 Месяц назад

    L-Ribose is the synthetic form

  • @sabbathd1
    @sabbathd1 Месяц назад

    Pickles from the store break through the blood brain barrier read your labels!

  • @sabbathd1
    @sabbathd1 Месяц назад

    all medications will give you dementia also preserved foods and junk food, all these cause dementia

  • @sabbathd1
    @sabbathd1 Месяц назад

    Get a MRI and see if anything is going on with your brain, if not...keep taking it

  • @sabbathd1
    @sabbathd1 Месяц назад

    My regulat blood pressure is 170 over 90 sometimes higher

  • @ericamalast9896
    @ericamalast9896 Месяц назад

    This sounds just like EPSTEIN BARR VIRUS . The parasite program from Dr hulda Clark kills it with black walnut tincture cloves and wormwood . Costs $59

  • @LindaDaubs
    @LindaDaubs Месяц назад

    You don’t want to live like this forever? I’ve lived like this for over 40 years. Went months on and off so weak couldn’t feed myself. Couldn’t roll over in bed. Couldn’t talk or listen from weakness. Haven’t slept without pills for thirty years before that only a couple of hours a night. Yes affected heart and in hospital twice because kidneys quit working. Immunity! What immunity. Pick up every big going around. As of now I can get up for about two hours and back to bed until next morning. How much does it cost to go to Berlin. There’s an idea.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      I'm so sorry for your suffering and for so long. It is a very cruel illness. I hope there can yet be better days ahead for you.

  • @lee-kazz
    @lee-kazz Месяц назад

    Thank you for your hard work helping all of us ❤

  • @rdklkje13
    @rdklkje13 Месяц назад

    Thank you! I do have a question: Might this device help for metabolic stress with other causes than ME/CFS or LC? Or are those protein markers linked to those two conditions specifically (as opposed to the metabolic stress itself)? What I have is very similar, but I'm not sure if it can be considered ME because, thankfully, I don't have much pain. So while it may be atypical moderate ME/CFS, I usually cite the symptom lists for Persistent post-concussion syndrome, Chemo brain and now LC too as the most similar, even though it isn't either of those conditions. (In Dutch it falls under the very broad category of 'NAH', which is considerably broader than English 'brain damage' usually).

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      You are very welcome! Well, I don't know about what exactly the measured protein is but the streasure4health website states it also has implications for type 1 diabetes. I don't know whether it will have implications beyond type 1 diabetes and ME/CFS and Long Covid, but those are the two indications it is being developed for.

    • @rdklkje13
      @rdklkje13 22 дня назад

      @@me-cfs-strategiesforhealing Thank you. It'd be great if Peter Deen might clarify this in the interview you're planning (-:

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing 22 дня назад

      Noted! :)

  • @Gina-dn6xm
    @Gina-dn6xm Месяц назад

    I can not get enough to drink and I have ME/CFS.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      By that you mean that you have excessive thirst?

    • @Gina-dn6xm
      @Gina-dn6xm Месяц назад

      @@me-cfs-strategiesforhealing Yes

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Look up the RUclips channel 'ME Ireland' and my talk there titled 'ME/CFS and thirst' in which I describe my whole awful experience with that symptom and how I resolved it. Or look up the health rising blog I wrote 'Why are some ME/CFS patients so thirsty? Have they been historically misdiagnosed as psychogenic water drinkers?' I hope those resources can help you. It's a horrid symptom.

    • @Gina-dn6xm
      @Gina-dn6xm Месяц назад

      @@me-cfs-strategiesforhealing Thank you so much; I will look up the information!

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      You are very welcome. It's a ghastly symptom but - although this can seem impossible when you are in it - it can be fixed.

  • @Anchor7
    @Anchor7 Месяц назад

    Although I don't know Billionaires, I do know people with deep pockets who may be interested. How do I get ahold of Prof Klaus?

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      That's brilliant. Write to me directly (via the contact form on my website which is just my name - Patrick Ussher) and I will put you in touch with Klaus. I'm in contact with him often.

    • @Anchor7
      @Anchor7 Месяц назад

      @@me-cfs-strategiesforhealing hey there, I will reach out over the weekend. Thanks!

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Cool, look forward to hearing from you

  • @MaxPayne-fi1mz
    @MaxPayne-fi1mz Месяц назад

    ESR Normal 😅 like 8

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      An ESR of 8 would seem to rule out microclotting.

    • @MaxPayne-fi1mz
      @MaxPayne-fi1mz Месяц назад

      @@me-cfs-strategiesforhealing Really? Then why do I have POTS and constant fatigue?😅😭😭.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Well, an ESR of less than 3 would suggest thick blood and microclotting pathology. There are plenty of other pathologies that contribute to POTS and ME/CFS - low blood volume, autoantibodies, mitochondrial issues, etc. Not everyone has all pathologies equally. I have a good friend with ME/CFS who has no signs of microclots at all but for me my microclots were through the roof.

  • @MaxPayne-fi1mz
    @MaxPayne-fi1mz Месяц назад

    Hi. I think there are people with Long Covid who do have ME/CFS but there are others who don't have that....

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Correct. The most severe form of Long Covid is ME/CFS (aka 'Post Covid ME/CFS') but others have more mild forms of persistent of illness.

    • @MaxPayne-fi1mz
      @MaxPayne-fi1mz Месяц назад

      @@me-cfs-strategiesforhealing Would you consider constant fatigue part of ME/CFS or is that applicable to normal POTS also? What is the differentiation point? Also, is BC007 for POTS specifically or ME/CFS? It seems you're an person who has had to gotten ME/CFS some time ago. I'm a realist and I see no way that anything actual comes up for ME/CFS or Long Covid for atleast another 15 years and that also if research momentum remains there and we're lucky. But since you must know better (I hope), have you seen any change in atitude among the researchers and medical community at large? And I mean actual change not just tweets or writing some papers for social studies.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      BC007 will work for ME/CFS, POTS and Long Covid as the autoantibodies against G-Protein Coupled Receptors (which BC007 targets) are common to all of these illnesses. I understand your frustration with the system. The truth is I don't know. I like to stay optimistic but, let's face it, we've received hardly any real support from the medical powers that be. That said, I do think Long Covid has definitely led to increased interest and research. And I do think a treatment like BC007 - which isn't far off - could change things majorly (doctors love treatments that actually make patients feel better - and if the treatment makes someone feel better, well they probably aren't suffering from a psychosomatic complaint). Also in the UK the government is talking about more change. So I do think things are happening that we should be grateful for, just not quite as much as one would hope for.

    • @MaxPayne-fi1mz
      @MaxPayne-fi1mz Месяц назад

      @@me-cfs-strategiesforhealing I also have internal vibrations mostly at night ... Is that related to these? I never had these things😭😭.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      This isn't medical advice but that could be part of autonomic nervous system dysfunction.

  • @pja8901
    @pja8901 Месяц назад

    I'm a little sceptical. Only because we've been let down with promises in the past. After all, they are in phase 2 at the moment. Which takes a couple of years. Even if the drug shows effectiveness and safety (33% of drugs make it past phase2), Phase 3 clinical trials can last as long as 4 years. It's a hopeful but unlikely silver bullet.

  • @bobbywankenobi9650
    @bobbywankenobi9650 Месяц назад

    I can’t seem to find the video with your oral rehydration drink. It wasn’t above during this video nor can I find it on your channel.

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Sorry about that, I'll look into why that was. It's called 'How I Boost Blood Volume in ME/CFS' and it was released back in March.

  • @AlexanderLisitsyn
    @AlexanderLisitsyn Месяц назад

    What is your D dimer level?

  • @susanpasi6759
    @susanpasi6759 Месяц назад

    Yes, I’m one of the “crazy” ones so your report is so validating. Thank you very much.

  • @angelbryan98
    @angelbryan98 Месяц назад

    There is a guy on reddit who claims to be cured of three years of Long COVID after going with the chiropractor and even ran a marathon after that.

  • @pallavimehta9445
    @pallavimehta9445 Месяц назад

    Consuming a vasodilator can also result in pots?

  • @christenes9966
    @christenes9966 Месяц назад

    Hope you continue to get better! Have you heard about Vitamin A toxicity though with eggs, liver and especially cod liver oil? It could be a big factor in symptoms (especially brain fog).

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Thanks very much and, I have indeed heard about it. I keep an open mind and maybe I'll experiment with it but I didn't find it a particularly convincing theory. I wonder if people do well on a low vitamin A diet because it also means they are cutting out a lot of other crap. What do you think about the idea though?

    • @christenes9966
      @christenes9966 Месяц назад

      @@me-cfs-strategiesforhealing fair enough, for me I at least found out about it from accidentally overdosing on it when I took vitamin C supplements (they added alot of Vitamin A to it that I didn't read on the ingredients beforehand). Got pretty much incapacitated and had to take 3 days off work getting over the migraine, nausea and eye strain. Started cutting out cod liver oil and other high vitamin a things to try it out and it has helped with symptoms alot. Seems because it's fat soluble it's harder to get rid of, so builds up in the body (liver and fat) over time and once you reach the threshold it spills over and causes symptoms every time you eat something with vit A or if the liver gets an injury from a virus or stressor, vit A apparently spills out from the liver where it's stored. Anyway, hope that helps

    • @me-cfs-strategiesforhealing
      @me-cfs-strategiesforhealing Месяц назад

      Thank you that does help a lot. Well you can't argue with success so it is definitely something I'll look into. I just love eggs though ;)

  • @src5769
    @src5769 Месяц назад

    I don't know if your illness allows it, but one of the Carnivore doctors said intermittent fasting helps with loose skin. You probably don't need to lose weight, but this kind of fasting also helps with a lot of illness along with Carnivore.

  • @unclesuss642
    @unclesuss642 Месяц назад

    thankyou for sharing your journey! i have me/cfs and pots. been trying different diets but never carnivore, thinking about trying it from listening to you and others with me/cfs and other chronic illnesses. Have had the experience of getting extremely tired when consuming large amounts of red meat so im a bit worried about that, but maybe the body will get used to alot of meat after a while? I really relate to your chocolate "situation", i have had many different food addictions and they are extremely hard to get rid of when you have a chronic illnes, since its the little joy we have through the day.. so good job on reducing it to dark chocolate! best wishes from Sweden :)