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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. Milo

    Milo Senior Member (Voting Rights)

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    However, how can one know this is not a placebo response? This question is not necessarily aimed at you @Mij but at all the claims of improvements following one treatment?
     
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  2. Mij

    Mij Senior Member (Voting Rights)

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    @Milo in my case my Mg RBC test showed a severe deficiency. The rocking motion in my head stopped, my gait was smoother, I was no longer out of breath and I felt closer to normal again. I didn't feel much difference with the MG shots alone, but when we added the taurine the relief was almost immediate. I probably took more shots than I needed, but I wanted to make sure my levels were way up.
     
  3. Milo

    Milo Senior Member (Voting Rights)

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    Sure i accept that. I think my question is more general- whether we can move past placebo response in clinical trials. In your case you have a hypomagnesemia. You supplement with magnesium and you feel better. What to do with treatments for ME. In the last clinical trial for ME, with Rituximab, half of the subjects had the placebo but believed they had a response when in fact they did received water.

    Edit to add, in order not to veer off-topic, how can patients ‘believe’ about effectiveness of a treatment, like K-pressin if only one doctor prescribes it and uses it and does not publish? What can go wrong? Patient may believe there are little improvement and the doctor interprets this as major improvement. Or patient may not feel better but appears better when he shows up at the doctors office and gets tagged as improved.
     
    Last edited: Jun 28, 2019
  4. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    So they tried to trademark a supplement as a pharmaceutical. :banghead:

    The testing is what makes your situation different than this K PRESSIN.
     
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  5. jpcv

    jpcv Established Member (Voting Rights)

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    As some people here know, I´m a pwME and a medical oncologist.
    After getting sick in the winter of 2015, I started to dig in the world of a unknown illness. One of the things the rang my alarms was the "X Doctor´s protocol" phenomenon.
    So I totally agree with Jonathan Edwards assesment of this embarassing situation.
     
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  6. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    @Trish, yes! Thousands of hours reading and thousands spent at Iherb...

    That reminds me to do a follow up interview with Australian psychiatrists who were studying mitochondrial supplements.
     
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  7. CFS_for_19_years

    CFS_for_19_years Established Member (Voting Rights)

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    Kutapressin was being discussed in 1994:
    https://www.prohealth.com/library/current-drug-treatment-trends-in-chronic-fatigue-syndrome-11381
    The two articles in 1994 were:

    Kutapressin Inhibits in vitro Infection of Human Herpesvirus Type 6
    D. V. Ablashi, Z. Berneman, C. Lawyer and A. Komaroff
    Clinical Infectious Diseases
    Vol. 18, Supplement 1. Chronic Fatigue Syndrome: Current Concepts (Jan., 1994)

    https://www.jstor.org/stable/4457615

    Subjective Reduction in Symptoms of Chronic Fatigue Syndrome following Long-Term Treatment with a Porcine Liver Extract: A Phase 1 Trial
    Thomas Steinbach, William Hermann, Carl Lawyer, David Montefiore, Sudhakar Wagle, Ali Gawish and David Ferguson
    Clinical Infectious Diseases
    Vol. 18, Supplement 1. Chronic Fatigue Syndrome: Current Concepts (Jan., 1994)

    https://www.jstor.org/stable/4457617

    In 2002 ProHealth summarized the results of the first study listed above (Kutapressin Inhibits in vitro Infection of Human Herpesvirus Type 6)
    https://www.prohealth.com/library/kutapressin-for-chronic-fatigue-syndrome-20168
    More links:
    https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/
    Lots of detailed info on the history of using kutapressin

    Summary of the long article above:
    https://www.esme-eu.com/antivirals/nexavir-kutapressin-for-me-cfs-article447-135.html

    https://drlapp.com/resources/relapses-and-flares/
     
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  8. Milo

    Milo Senior Member (Voting Rights)

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    Thank you @jpcv this is an important message. There are other protocols out there where physicians use their own formulation, some have even taken people in Costa Rica for ‘stem cell treatments’ (20,000$ a pop, plus travel expenses). This practice does not happen in mainstream oncology, where treatment protocols are determined by science and clinical trials.

    The harm being done is that there is no record of effectiveness from clinical trials, no scientific publication, no scientific advance from these doctors’ experience, and a lot of money spent by patients made to believe they could be cured by these treatments.
     
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    more info on this;
    Kutapressin now called Nexavir (it's an antiviral):
    Used as treatment by Dr De Meirleir, Dr Cheney,Dr Lapp, Dr Teitelbaum and Dr Enlander
    http://www.esme-eu.com/antivirals/nexavir-kutapressin-for-me-cfs-article447-135.html

    see also
    http://nexco-pharma.com/history.php
     
    Last edited: Jul 3, 2019
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  10. Trish

    Trish Moderator Staff Member

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    Now I'm completely confused. So according to this blog it's not just a nutritional supplement, as I had supposed from the use of the term 'liver extract' in the list of ingredients for hepapressin. Whatever is extracted from the liver has drug effects on viruses, so they claim.

    Has anyone found a clinical trial published on this stuff? Preferably a double blind controlled trial?

    It seems it's popular with some US ME doctors, but none of them has done a proper clinical trial. And when they talk about patients improving - the blog quoted is very vague about how much improvement is experienced. Is it yet another placebo?
     
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  11. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    De Meirleir used to prescribe Nexavir. There was a court trial about it because he imported it to Belgium without permission. De Meirleir argued that it was just a nutritional supplement, but the court eventually ruled that it was a drug.
     
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  12. TiredSam

    TiredSam Moderator Staff Member

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  13. dr enlander

    dr enlander New Member

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    I am STILL at Mount Sinai Medical Center, K pressin is in a clinical trial at present.
    Deny PACE and NICE which makes ME CFS a psychiatric problem, it is a physical problem possibly based in the immune system. We believe that the methylation cycle may be deficient. This is what we are working on
     
    Last edited by a moderator: Jul 29, 2019
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  14. dr enlander

    dr enlander New Member

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    Nexavir was a continuation of Kutapressin, many in control of Medicine in Belgium thought that ME CFS was a psychiatric condition, and Dr De Meirleir did not accept their thinking. Nexavir therefore was not acceptable to them. He was mistreated in my opinion.
     
  15. Trish

    Trish Moderator Staff Member

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    Hello @dr enlander, welcome to the forum. I am pleased that you have joined us as it will, I hope, enable us to learn more about the clinical trial you are running for K pressin.

    I have just re-watched your video linked at the start of this thread. I hope you will understand that, for someone like me who has been sick for 30 years, seeing what comes across as a advertisement for a bottle of unnamed ingredients does not seem like a good way to make me feel confident I would want to buy it.

    We are faced every day with protocols, remedies, 'cures' and treatments. The on-line world is full of people trying to sell us stuff. At the moment we have no way of distinguishing Kpressin from the rest.

    I have a few questions I would be grateful if you could answer.

    1. On this forum our interest is in science, and evidence based medicine. I am pleased to hear you are doing a clinical trial. It would be a great help to us if you would let us know what stage it is at. All you say on the video is that you are 'taking note from patients using it to give a report later in the year'.

    Can you be more specific? Is it a pilot study, or a full trial? Is it double blinded, is there a control group, and what are your primary and secondary outcome measures? Is there a registered protocol we can read?

    2. I note also that you say on the video that you believe ME/CFS is a 'problem of an abnormal methylation cycle in the immune system'. I would be interested to learn more about the basis for this. Can you point us to the research papers supporting it?

    3. And finally, you describe Kpressin as an oral version of kutapressin and hepapressin. Can you give us a link to the research done showing effectiveness of either of these?

    Thank you.
     
    Last edited: Jul 29, 2019
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  16. Milo

    Milo Senior Member (Voting Rights)

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    @dr enlander I would also like to know if you have a clinical trial running, why is it not registered or listed at clinicaltrials.gov?
     
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    My apologies if I have got this wrong. As I understand it, from the Mt Sinai website, you work there as a clinical instructor at The Icahn School of Medicine at Mount Sinai.

    I was referring to your work as a doctor.

    As far as I can find out, your clinic is here:

    Dr. Derek Enlander
    860 5th Ave
    New York, NY 10065

    and although you are affiliated to Mt Sinai Hospital, your practice operates as a separate, private clinic that doesn't accept insurance.
    Other than your Facebook page, I cannot find any reference to a ME or CFS clinic at Mt Sinai Hospital.

    (not intended as a criticism, just seeking clarification).

    eta: also re the clinical trial, I cannot find it on Mt Sinais Clinical trials search
    https://www.mountsinai.org/clinical-trials/search
     
    Last edited: Aug 7, 2019
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  18. Cheryl

    Cheryl New Member

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    I did kutapressin shots shipped up from the USA to Canada in 1994 for 6 months and I improved greatly not enough to go back to work but I had hope - unfortunately I never continued - though I had plans to - every doctor after the GP (aids doc) who shipped it up for me - either had no interest in M.E. or my lack of quality of life or changed my ME DX from 2 infectious diseases specialists into a somatic disorder curiosity of psychiatry. I search for info on Dr Enlanders K PRESSION as I saw his video today which brought me here. I know he used Nexavir hepapressin which wasn't as good an outcome (not a strong) as kutapressin, however, I would have taken it and compared to the Kutapressin but i have been housebound without a GP since 2004.

    I have taken porcine frozen Natcell products but had little improvement. I can't find the K PRESSION ingredients list or patients results from search - they should be easily findable
    thx
     
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  19. Wilhelmina Jenkins

    Wilhelmina Jenkins Established Member (Voting Rights)

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    Totally my own experience, but I took Kutapressin back in the early ‘90s also. Most of my support group friends were Dr Cheney’s patients and they seemed, anecdotally, to be having good results.

    I am a fairly skeptical person, but two doctors in TX had published a paper on it which I read carefully and decided to give it a try. My husband learned how to give me the injections - a little too enthusiastically, in my opinion!

    After just a few shots, my health, which was bad already, nosedived. I was desperately and called one of the TX doctors. Every time I quoted his own paper too him, he’d say “Did we say that?”

    Finally he informed me that, if the medication was not working, I must have some other disease. Since he was in TX and I couldn’t get out of bed, I couldn’t hit him with my cane, but I sure wanted to.

    I, of course, discontinued using the medication, but my support group friends had serious doubts that I would recover to my previous terrible condition, but after a number of months, I did. Not a fun experience.
     

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