Sunday, June 13, 2021
Mitochondrial Health

Cutting edge ME researchers share their research with the #MillionsMissing – #MEAction UK



Dr Bhupesh Prusty, Ronald W Davis, Janet Dafoe and Prof Sarah Tyson talk about their latest research and share their thoughts on what the future holds for people with ME.

Thanks to Ross Scott for editing these interviews and supporting #MillionsMissing 2021. Find his work at: https://www.rossscottjr.com/ These interviews make up a series for #MilionsMissing 2021, a campaign run by #MEAction to raise awareness of ME and demand action to create meaningful change for those living with this disease.

Other videos in this series are:

Behind the scenes with #MillionsMissing organisers

Award winning authors talk about living and writing with MEHow to turn you MP into an ally

Behind the scenes at the James Lind Alliance Priority Setting Partnership

Medical Education with Dr Nina Muirhead and midwife Hayley Valentine-Howard

What is DecodeME? What it will do and how you can take part.

Speaking from the heart with Janet Dafoe, Linda Neale and Stuart Murdoch

source

Similar Posts

29 thoughts on “Cutting edge ME researchers share their research with the #MillionsMissing – #MEAction UK
  1. God bless these brilliant researchers for their dedication. You give hope to the patient community and hope is what keeps us going. And thank you ME Action for putting this out there.

  2. So grateful to everyone being interviewed here. Great to hear about the research being done, as a scientist myself I know how hard it is to get experiments to work and all the frustrations that come with it. I totally agree with Bhupesh Prusty, this illness is such a mystery it should be considered an exciting area of research I hope with more attention brought by the intrigue of long covid that more funding becomes available. My heart aches for Ron and Janet and of course Whitney, I can't imagine how hard it must be for all of them, just seems exasperating on so many levels. I hope we all get some answers soon. I have had ME before after getting a stomach infection traveling to India butI recovered after 13 months….. then March 2020 I developed flu symptoms presumably covid, recovered after a few weeks but then a month later, the familiar dreaded symptoms of ME/CFS came back with full force. Been housebound since June 3rd. Devastating to be back in this dark hole again after thinking I'd had a lucky escape. Trying to stay hopeful for a research breakthrough!

  3. keep going prusty you are very talented, don't let them wrap you up in bureaucratic red tape ! theres some sort of agenda trying to stop us from finding the cause of the disease, no funding ! time for paradigm shift.

  4. Living with a virus for eternity is something you need to sit down and think. There is a cure for any type of virus and diseases. So why listen to people who will discourage you and not give you a cure. Alternative cure for any type of virus, diseases and STDs available by Dr Aigbebemen

    1; HSV1 and HSV2
    2; Lupus diseases
    3; Cancer
    4; Human Papilloma virus (HPV)
    5; Crohn's diseases
    6; Diabetes
    7; Sickle Cell Arnamia
    8; Herpes
    9; HIV
    10;Hepatitis
    11;Diabetes
    12;Pile
    for any health issues Contact him for help in ridding out your problem.I am here to testify how doctor Aigbebemen used his herbal treatment to cure my hsv2 with the help of pure good roots and herbs. Contact Email: [email protected]gmail.com or WhatsApp via: +2349052582863.

  5. Very grateful to all these wonderful people with their heads down in researching. You are legends! Hope is so important, keeps the wheels turning. So difficult for all sufferers of this wretched illness.

  6. Living with a virus for eternity is something you need to sit down and think. There is a cure for any type of virus and diseases. So why listen to people who will discourage you and not give you a cure. Alternative cure for any type of virus, diseases and STDs available by Dr Aigbebemen

    1; HSV1 and HSV2
    2; Lupus diseases
    3; Cancer
    4; Human Papilloma virus (HPV)
    5; Crohn's diseases
    6; Diabetes
    7; Sickle Cell Arnamia
    8; Herpes
    9; HIV
    10;Hepatitis
    11;Diabetes
    12;Pile
    for any health issues Contact him for help in ridding out your problem.I am here to testify how doctor Aigbebemen used his herbal treatment to cure my hsv2 with the help of pure good roots and herbs. Contact Email: [email protected]gmail.com or WhatsApp via: +2349052582863.

  7. Great interviewing in this video. It is really encouraging to hear what is being learnt. It is a real shame that these wonderful open minded researchers, do not have more support. Thankfully the knowledge has come a long way in the thirty years since I first became ill.

  8. Ron Davis and family – your metabolic trap fits best for our presentation. We are in the UK. My daughter, 26, now very severe: not post viral, slow onset from 13, only positive test: under performance in mitochondria (blood only – too un-believed, too low an income and too unrelated to medical professionals to know how to get a muscle biopsy). She was a very healthy child, does not have 'brain fog' or digestive difficulties (except for finding the energy – after steady and now rapid decline since onset – to digest fats & proteins). She is now as poorly as your son was pre aripiprazole so too sick for much more life. No doubt about ongoing/increasing and very uncomfortable inflammatory responses, but no known markers in blood. No idea if this could be helpful to your thinking but hope very much this non-viral group may provide some control to the variables. !!! & THANK YOU JANET!!!

  9. Thank you! The rest of public health and private health "systems" have failed and are still failing millions of pwme, their families and friends, a significant burden which could have been investigated thoroughly and prevented. And that's only one part.

  10. So grateful for anyone out there researching this terrible illness that has taken away my life from me and so many people! Sending love especially to Ron and Janet and their son Whitney!

  11. I wish there was a way for lay people to help out with experiments i.e. testing different substances is this special yeast. What would happen if just 100 of us were able to help?

  12. Over the decades, researchers have said there is an infection, and researchers have said there *isn't *; that there might be an infection in the gut, there might be an infection in the Vagus nerve, there might be an infection in the brain. Or not.

    There might be a problem with the mitochondria – and there might not be. There might be a problem with lactic acid production – and there might not be. There may be a problem with B-cells (or T-cells) – or there might not be. There might be a problem with NO and ROS – and there might not be. There might be a metabolic trap – and there might not be. There may be a problem with RBCs and microcirculation – or there might not be.

    After decades of research, it seems like we still don't even know the basics of ME/CFS.

    Three years ago, Ron Davis promised diagnostic tools that would cost pennies. Where are they? He said there was a chemical in the plasma that made cells dysfunctional. What is it? He said his nano needle device would revolutionize the search for treatments. What happened to that?

    ME/CFS research, as a whole, seems to be mismanaged and uncoordinated – I'm only singling out Ron because he's one of the subjects of this video; he's obviously a very smart guy. But it seems that every research group is working their own narrow agenda, instead of collaborating. Ron often talks about sharing data, but what about sharing/debating ideas regarding mechanisms of pathology? Or methods to verify what we know/don't know – so that 90% of the field isn't spinning its wheels on fallow ground?

    Whatever happened to the jetpacks we've been promised since the '60s? Off-topic, perhaps, but it still disappoints me. And, as I look around in the ME/CFS field, I can't help but wonder if most of the talent is working in the jetpack lab, and it's still 1963.

  13. Really great talks 🙂 Has anyone written out a theory about how the mitochondrial dysfunction and/or kynurenine interrelate with the full-body and brain neuroinflammation of a post exertional malaise? Also, why is their a 12 hour delay between too much activity and getting hammered with a PEM? Does that say something critical about how the components of the disease interact? I know for me, I have a pretty strict threshold I have to stay under. There is not much wiggle room in how many steps I can do in a day or how high my heart rate is allowed to go. Do you have an idea yet of what the the threshold actually is, and what the cascade of reactions must be that surpassing the threshold triggers? and why, once they get going, they can't seem to be stopped? Although the symptoms can be made a little better with various treatments, the course of the PEM never seems to waver for me – always two horrible days and one week recovery. I haven't found an explanation yet of the physiological/molecular happenings of a PEM timeline, and am wondering if I missed it, or if you don't have enough information yet? Thanks 🙂

  14. Forgive my intrusion. To news is for everyone reading this comment I want to highly recommend Dr. Kanayo Peterson on Google for curing me naturally with his 14 days negative medicine, may God almighty continues to bless Dr. Kanayo Peterson.

    I just discover 14 days negative now have a lot of distributors all over the states, I saw some of your agents on the street of Bellwood Ct, Concord, California when I want to visit my parents. My sister in-law in New York used it because she was having infertility problems. After 5 years of marriage the doctors couldn’t help but today I’m happy to say Dr. kanayo’s natural remedy made her so fertile she got pregnant and give birth to triplets 😁 her home is full with joy,

    words can explain how much we love you Doctor Kanayo, her husband just bought her a new Range Rover Sport

  15. I contracted herpes' I was told there is no Herpes cure except treatment to control it. I totally lost hope. All I could think was losing my life because it was so embarrassing to have this virus, few weeks ago I read about a possible natural cure which was guaranteed. And I ordered the treatment after some weeks I got 100% cure. Now I'm so excited to share this testimony thanks Dr omohan Email:[email protected]gmail.com.

  16. Thank you for these excellent interviews. It’s so good – reassuring, hope-giving & exciting – that there are people beavering away to solve the mysteries of this wretched illness.

    Thanks to MEaction for organising. A request – is there any way this film could be chunked down into three or four shorter videos please? It would make the contents much more accessible and shareable – both within our community, and beyond. Thanks.

    Finally, I really, really hope that the DecodeME team (massive genetics research project about to start in the UK) are in touch with Ron. Using precious time, energy and funding to replicate research would be an enormous waste of resources – unless of course it is beneficial for a larger study to confirm findings. But as Ron rightly says – it’s treatments that we urgently need not lots of data.

    Here’s to a breakthrough…soon!!

  17. Nothing can compare the joy in my heart for being free from this terrible disease Herpes,for a long time I suffer from it not until I saw a review on how Dr Edusa herbs on YouTube Cured someone from Herpes..I contact him and bought his medicine lucky for me I was cured and free.

  18. You guys are amazing. Thank you so much for all your dedication. I loved watching this. You do give me hope. You’re very special people and much appreciated. Gratitude has helped me more than anything. And connection – as I live alone. Thank you for your words too. I’m hanging in there 🙏🌻💕

  19. Herbal treatment is 100% guaranteed for all kinds of human Infections, the reason why most people are finding it difficult to cure there illness is because they believe on medical report, drugs and medical treatment which is not helpful to cure diseases. Natural roots/herbs are the best remedy which can easily eradicate diseases/Virus forever,for more information about how he uses herbs to cure infections/diseases please contact him on WhatsApp +2349046230269

  20. You would never know how terrible diverticulitis disease is till you see someone with it you have it, I lived with it so many years in pain. I used so many medication but to no avail until I used a medication from Madida herbal center by Dr Madida that ultimately cured me completely.

  21. Getting rid of herpes virus wasn't easy, I came across Dr Isibor on how he has cured so many people from herpes and other illness so I decided to give him a try. Now I'm permanently cured using the natural herbs and cleansing supplement sent by dr isibor no more herpes.

Leave a Reply

Your email address will not be published. Required fields are marked *