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K Pressin: new treatment for ME CFS(?) - video Dr Derek Enlander (25 June 2019)

Discussion in 'Other: Methylation; B12; Glutathione; GcMAF' started by Sly Saint, Jun 26, 2019.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Not a recommendation





    youtube generated text
    this seems a bit irresponsible or am i missing something? (ie promoting a product before it has been officially tested)

    eta: see my later post for more info
    https://www.s4me.info/threads/k-pre...nlander-25-june-2019.10158/page-2#post-181073
     
    Last edited: Jul 3, 2019
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  2. Trish

    Trish Moderator Staff Member

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    Oh dear. That is so irresponsible. It's an advertisement for a drug that his practice are selling on the basis that 'some of our patients find it useful'.

    That really gives medicine a bad name.

    Where is the clinical trial evidence. The answer seems to be that there isn't any.

    Nothing about side effects, dangers, interactions with other drugs...
     
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  3. Trish

    Trish Moderator Staff Member

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    Doing a bit more exploring. The injection used by some doctors of something called hepapressin is described here https://chronicfatiguepharma.com/pages/hepapressin-injection
    Ingredients:

    • Magnesium Sulphate
    • Vitamin B12
    • Folic Acid
    • Liver Extract
    • Trace Element (Zinc, Copper, Selenium, Manganese)
    • Glutathione
    • Calcium
    So it looks like it's a supplement injection that is part of a protocol used by some US doctors treating people with ME.

    I can't see any research on its efficacy. It seems to be part of a protocol, and we don't allow promotion of unproven protocols on S4ME.
     
  4. Trish

    Trish Moderator Staff Member

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    Sorry to cause confusion. I did watch the video. He says it's a sublingual version of the injectable hepapressin, so I assumed it would have the same ingredients.
     
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  5. ringding

    ringding Senior Member (Voting Rights)

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  6. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Looks like a bottle of lube.

    Another doctor who's found the answer! This time it's the methylation cycle. BRAVO.
     
  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Why not do a clinical trial. We can't keep having all these 'fringe' doctors trying to sell stuff from their bedrooms.
     
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  8. ringding

    ringding Senior Member (Voting Rights)

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    I'm a bit new to this so having dug a bit further there's a bit of history, taken from here. Looks like the latest in a long line of similar 'treatments'. Haven't looked at any of the papers that are referenced.

    "Dr. Enlander

    Dr. Enlander used Kutapressin for approximately 12 years until Schwarz Pharma ceased producing it. He then originally tried Nexavir on his patients however due to the preservatives within Nexavir, he trialled his patients on Hepapressin. Hepapressin is similar to Nexavir however it is an Argentinean bovine liver extract, as opposed to porcine liver extract. Dr. Enlander recommends that his patients take other substances in tandem with Hepapressin to increase its effectiveness. 67% of his patients have shown an improvement as a consequence of weekly Hepapressin injections in combination with other treatments. Recently, Dr. Enlander commenced a study alongside Dr. De Meirleir that examined alternative ways to administer Nexavir/Hepapressin."
     
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  9. feeb

    feeb Senior Member (Voting Rights)

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    https://trademark.trademarkia.com/k-pressin-88296207.html

    Looks like they're having some trouble at the patent office:

    Gearup.com redirects to an apparently unrelated Thomson Reuters website.
     
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  10. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    As a Brit, the whole way the American system works, with all these doctors and their protocols etc. Just so bizzare! I mean it's good in a sense, because you get doctors trying different things - thinking outside the box, whereas in the UK everything is so standardized and by the book. On the other hand, I feel the chronic illness community just gets taken for a ride.
     
    Last edited: Jun 26, 2019
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  11. Trish

    Trish Moderator Staff Member

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    I seem to be Facebook friends with Dr Enlander, so I've asked him if he can give a link to any clinical trial evidence for the efficacy of hepapressin or K pressin.
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think this is straight pseudoscience leading to quackery. I agree that it is bizarre that anyone, or any regulatory body, should consider it acceptable for physicians to put out videos like this.
     
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  13. strategist

    strategist Senior Member (Voting Rights)

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    Right. The American patients are often on half a dozen medications.
     
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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Dr Enlander is considered an 'ME expert' in the US (he was Jen Breas doctor and is in Unrest). He has previously said on a number of occasions that he and his team (when he was at Mt Sinai, he now has a private clinic) 'proved' that exercise was bad for pwME but they never published anything on it. So there will be a lot of people who will follow his advice; one of the reasons I was a bit shocked to find this video.
    I think he still has connections at Mt Sinai (Terri Wilder of #MEAction works there).

    see also:
    https://www.s4me.info/threads/mount-sinai-medical-center-ny-and-dr-derek-enlander.2274/
     
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  15. Trish

    Trish Moderator Staff Member

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    The frustrating thing with these nutritional supplement treatments is there are dozens of them, all expensive, and all claimed to help ME, but none properly tested in clinical trials, so we have no idea whether they are helpful, harmful or just a waste of money.

    And mostly pushed by doctors who claim to be ME experts. Are they doing it for the money, or because they genuinely think these things are making a significant difference to patients' health, or as placebos?

    It's so easy to get caught up in wanting to believe something is helping. I have a box of unopened pots of pills I bought at various stages a few years ago when I first joined forums and read threads where people claimed this or that nutrient or combination of nutrients was helping them. I'd order them, and then not try them when the same people, or others would come on the thread saying they'd got worse again, the effect hadn't lasted, or blaming some other factor for their health worsening but still taking the expensive supplements.

    I take note also of Ron Davis's warning not to take stuff that is mentioned in the complex biochemistry talked about by researchers, as taking the wrong nutrient may cause an imbalance and actually make things worse.

    But there's always that niggling feeling that I might be missing out on some magic combination of nutrients that might help me. I wish these doctors would do the research.
     
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  16. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    All this nutritional supplement treatment stuff was the main reason I moved from the other forum to here. As I said earlier, being a Brit, I had no idea people were spending hundreds of dollars a month on these 'protocols'.
     
    Last edited by a moderator: Jun 27, 2019
  17. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    Makes it even more worrying that he’s not a fringe doctor and yet promotes this stuff.
     
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  18. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I did it with Dr Myhill when I hadn’t learnt enough to know better.
     
    Last edited by a moderator: Jun 27, 2019
  19. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I did it myself at one point. I think by bringing up Myhill - who I don't have much time for - you have proved my point. She is the perfect example of a 'fringe' doctor; indeed, it is partly this that has got her in trouble with the NHS. Like Dr. Enlander, I'd like to see some proper evidence from Dr Myhill about her protocol (which includes all sorts of testing, supplementation and dietary changes. She has been running her clinic for many, many years now. She's running a small empire between her clinic, testing facility, books, online store, Natural Health Worldwide, etc.
     
    Last edited by a moderator: Jun 27, 2019
  20. Mij

    Mij Senior Member (Voting Rights)

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    We are most likely to feel better if we take supplements that we are deficient in. You won't know which supplement is helping if you take a whole gob of them.

    I recall JB took magnesium shots and felt they helped her. I took shots for years (off and on) and it made a huge improvement in my overall energy, and I no longer felt out of breath from walking one block.
     
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