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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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youtube generated text
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good morning my name is dr. Endre and
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here is the latest report relating to
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mecfs myalgic encephalomyelitis prana
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fatigue syndrome I'm actually pleased to
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announce today that we have a new
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development in the treatment of mecfs
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looking back over the history of the
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condition in 1955 Melvin Ramsay the
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brilliant elect English physician at the
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Royal Free Hospital in London first
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considered that a group of young
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physicians and nurses who complain of
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massive debilitating fatigue had in fact
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a condition which he determined was
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post-viral fatigue the idea of a massive
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debilitating condition our somewhat @gs
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receives skeptically by other physicians
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because the normal blood tests of these
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physicians and nurses were normal so
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they actually thought that this was a
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group of young physicians who were
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hysterical but he persisted and he
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actually called the condition initially
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post-viral fatigue
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he later Archie changed the name of the
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condition to myalgic encephalomyelitis
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or abbreviated to M II
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years later about a decade later or so
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in the United States the same condition
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was a termed chronic fatigue syndrome
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unfortunately an unfortunate change of
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name because this led to triviality of
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the term and therefore basically making
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the patients who were termed suffering
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from this condition subject to
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skepticism although over the years we
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have Archie looked at this condition and
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we believe that this is a physical
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condition it is not actually an
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imaginary conditioner or a psychological
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condition we believe actually that this
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condition is due to dysfunction or a
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problem in the immune system we and
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several other workers in the field have
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actually be able to determine that the
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methylation cycle in the immune system
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has a chi being abnormal and this is
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where the problem lies
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according to work by my colleague and
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friend rich
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van cauwenberghe unfortunately rich died
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a couple of years ago the immune system
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problem is in the methylation cycle and
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we believe actually that the methylation
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cycle is abnormal jus perhaps to
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exposure of the patient to one or more
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viruses two decades ago q depressin
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injection a an injection now made by a
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company called Schwartz Pharma in
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Wisconsin was used as a treatment for
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mecfs unfortunately Schwartz Pharma went
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out of business it was a German company
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undercapitalized in Wisconsin and HEPA
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pressin was used as a substitute both
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pewter present and HEPA pressin are
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objections and our prescription items
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this year we have researched a
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substitute for your present and ever
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present in the form of an oral
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substitute and the idea is that the oral
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substitute can actually be given over
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the counter with a prescription the
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problem with an oral substitute is that
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it has to be kept sublingually in the
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mouth for several minutes in order for
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the substitute to be absorbed by the
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multiple blood vessels that are
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contained in the mouth and under the
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tongue we actually have been exploring
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the k' present here and we are now
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actually please turn eyes that it is
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available and we are actually still
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taking a note from patients actually who
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are using it to actually be able to give
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a report later in the year but as as yet
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we find that the k present is helpful to
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a number of patients with mecfs it can
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achieve be obtained from our practice at
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two one two seven nine four two thousand
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two zero zero zero and the k pressin
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unfortunately is bitter to taste we in
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later batches hope hope to overcome some
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of this bitterness but at present the
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sublingual k present is kept in the
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mouth for three to four minutes after
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four shots from this bottle are pressed
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in into the mouth under the tongue it is
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given twice a day hopefully a tea or we
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will hear from you with regard to the
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use of k present and we will await
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further development thank you very very
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much
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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
 
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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...
 
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.
 
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."
 
https://trademark.trademarkia.com/k-pressin-88296207.html

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

On Monday, February 11, 2019, a U.S. federal trademark registration was filed for K PRESSIN. The USPTO has given the K PRESSIN trademark serial number of 88296207. The current federal status of this trademark filing is RESPONSE IMPROPER. The correspondent listed for K PRESSIN is GEAR UP PHARMA INC of GEAR UP PHARMA INC, 1035 FIFTH AVE, #10D, GEARUP.COM NEW YORK, NY 10028 . The K PRESSIN trademark is filed in the category of Pharmaceutical Products . The description provided to the USPTO for K PRESSIN is Health food supplements.
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Status Update! On Thursday, June 6, 2019, status on the K PRESSIN trademark changed to RESPONSE IMPROPER.
Click to expand...

Gearup.com redirects to an apparently unrelated Thomson Reuters website.
 
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.
 
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InitialConditions said:
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.
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Right. The American patients are often on half a dozen medications.
 
InitialConditions said:
We can't keep having all these 'fringe' doctors trying to sell stuff from their bedrooms.
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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/
 
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.
 
Sly Saint said:
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/
Click to expand...

Makes it even more worrying that he’s not a fringe doctor and yet promotes this stuff.
 
InitialConditions said:
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'.
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I did it with Dr Myhill when I hadn’t learnt enough to know better.
 
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Diluted-biscuit said:
I did it with Dr Myhill when I hadn’t learnt enough to know better.
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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.
 
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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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