Article about new potential treatment by Victoria Bohne, in Norwegian

[valentinelynx]

She has ME. Maybe that´s enough as an explanation. I don´t know.

If that's the reason, not a good recommendation for her treatment... of course, totally raw speculation. I hope she's OK.

 

[wigglethemouse]

Text of the patent is now available. Any boffins like to comment?

The inventors of the present invention have surprisingly found that oxalic acid or derivatives or salts thereof have a curative effect on CFS/ME/SEID. We do not know the exact mechanisms of the active compounds but key metabolic pathways are modulated by the addition of the compounds of the present invention.

https://patentscope.wipo.int/search...ryString=FP:(+BOHNE+ASKØY)&tab=PCTDescription

 

[NL93]

Text of the patent is now available. Any boffins like to comment?

The inventors of the present invention have surprisingly found that oxalic acid or derivatives or salts thereof have a curative effect on CFS/ME/SEID. We do not know the exact mechanisms of the active compounds but key metabolic pathways are modulated by the addition of the compounds of the present invention.

https://patentscope.wipo.int/search/en/detail.jsf?docId=WO2018097733&recNum=2&maxRec=2&office=&prevFilter=&sortOption=Pub Date Desc&queryString=FP BOHNE ASKØY)&tab=PCTDescription

Hi @Janet Dafoe (Rose49)
Has Ron seen this?

 

[AndrewR]

Was this released today? Can anybody with knowledge summarize it? Not in any condition to understand most of what this is and what it means

 

[wigglethemouse]

The inventors of the present invention have surprisingly found that oxalic acid or derivatives or salts thereof have a curative effect on CFS/ME/SEID. We do not know the exact mechanisms of the active compounds but key metabolic pathways are modulated by the addition of the compounds of the present invention.

Tagging @Hip @mariovitali as you guys seem interested in compounds that have an effect

https://patentscope.wipo.int/search...ryString=FP:(+BOHNE+ASKØY)&tab=PCTDescription

 

[Mary]

A little fly in the ointment is there unfortunately; an old neck injury from a car accident Eirik was involved in as a child has been triggered after his eagerness to get out of bed managed to twist the neck in the wrong position. Therefore he still lies down, but from the bed he's keenly searching for the right help, and hopes that he will get this fixed in the near future.

I can't help wondering about the neck injury patient Eirik suffered as a child after reading about chiari malformation and craniocervical instability here. How would this square with oxalic acid problems? I don't know, perhaps the neck injury led to these problems. It just struck me quite forcefully that he had a neck injury as a child.
​

 

[wigglethemouse]

For completeness here is the other patent listed for "BOHNE ASKØY" on the database "Prevention and/or treatment of hyperlactataemia"

https://patentscope.wipo.int/search/en/detail.jsf?docId=WO2018097734&recNum=1&office=&queryString=FP BOHNE ASKØY)&prevFilter=&sortOption=Pub Date Desc&maxRec=2

A nutritional or pharmaceutical composition for the prevention and/or treatment of hyperlactataemia or lactic acidosis is described. Also described is a pharmaceutical or nutritional composition for reducing the amount of lactate in the blood of an animal.

EDIT to add description in italics

 

[wigglethemouse]

Bohne Askøy Facebook page in English
https://www.facebook.com/bohneexperiementallaboratoryoflivingcellenergy/

Bohne Askøy Facebook page in Norwegian - If you use the translate feature there seems to be a little more information here
https://www.facebook.com/bohneexperemlaboflivingcellenergy/

 

[Navid]

@Ben H
@Janet Dafoe (Rose49)

Is this something OMF can look into and if valid get involved with somehow?

Thanks.

 

[mariovitali]

Tagging @Hip @mariovitali as you guys seem interested in compounds that have an effect

https://patentscope.wipo.int/search/en/detail.jsf?docId=WO2018097733&recNum=2&maxRec=2&office=&prevFilter=&sortOption=Pub Date Desc&queryString=FP BOHNE ASKØY)&tab=PCTDescription

I went through the text, it is an interesting approach, mainly because it contains several elements that could be important for ME/CFS Patients (as found by Machine Learning). Some elements like Niacin are questionable (according to my Hypothesis)

 

[babeng]

Very interesting that they specifically state on their facebook page that their treatment targets pyruvat dehydrogenase.

To sum up from other articles I've read in Norwegian, they withdrew from a deal with a german pharmaceutical company a couple of years ago because they felt they would loose control and it would prolonge the time before Norwegian patients could receive the drug. They have since struggled with financing. There are currently 13 patients receiving the treatment each day, but the patients have to live nearby since the drug has to be made daily by Bohne

 

[babeng]

Some elements like Niacin are questionable (according to my Hypothesis)

@mariovitali Does the patent filing state exactly what elements the treatment consists of? I neither have the energy or competence to read the filing myself..

 

[mariovitali]

@mariovitali Does the patent filing state exactly what elements the treatment consists of? I neither have the energy or competence to read the filing myself..

Unfortunately i do not have much time to go through the whole text in detail but my current understanding after the quick read i made is that the patent involves a drinkable kind of oxalates along with a mix of niacin, riboflavin, thiamine, alpha lipoic acid

 

[Eastman]

...the patent involves a drinkable kind of oxalates along with a mix of niacin, riboflavin, thiamine, alpha lipoic acid

I suppose that the oxalates are to produce oxaloacetate and the rest are to force the PDH to produce acetyl-CoA. These two more or less start the citric acid cycle.

 

[babeng]

Unfortunately i do not have much time to go through the whole text in detail but my current understanding after the quick read i made is that the patent involves a drinkable kind of oxalates along with a mix of niacin, riboflavin, thiamine, alpha lipoic acid

Thanks!

 

[enduin]

I read the whole paper and I'm gonna try to summarize what I believe to be the most important points in a CFS-friendly fashion.


- The treatment tested consists of a beverage made of "fruits, greens, vegetables and nuts in proportions necessarily to achieve desirable concentration of soluble oxalates" in doses of 250ml. There were 11 total patients enrolling at different times ranging from 8 to 150 weeks (2 months to a little over 3 years).


- The other supplements (1200 mg alpha-lipoic acid + 12 mg thiamine + 27 mg niacin + 2.5 mg riboflavin per day) were introduced later and not tested on all 11 patients. The supplements were found to have a beneficial effect but the efficacy of the oxalates treatment was assessed without the extra vitamins and supplements.


- To introduce a sort of placebo control, they added calcium carbonate to the oxalate rich beverage so that the oxalic acid would turn into calcium oxalate which is not absorbable. They called this concoction "Quenched Drinkable". They then administered it to the patients without the patients knowing they were taking something different, and they did notice CFS symptoms coming back when the inactive drink was consumed instead of the active form.


- They made 6 versions of this active beverage with different recipes, and they found one in particular to be effective. They determined that the efficacy of the active beverage was related to: "concentration of soluble oxalates; ratio between soluble and insoluble oxalates; types of soluble oxalates and ratio between different types of soluble oxalates". They also found that the ideal concentration of soluble oxalates was between 0.39g/Lt and 0.87g/Lt (their best recipe had 0.61g/Lt).


- There is a long section that talks about Lactate, how they tested for Lactate, how thy found that CFS patients had higher than normal Lactate, and how they believe Lactate to be a biomarker for CFS and Lactate levels to correlate with severity of symptoms. Interestingly they mention how Lactate is normally metabolized primarily (60%) by the liver. Maybe this could be the connection with the liver @mariovitali has been working on?


- According to this study, ALL patients experienced improvement of their symptoms from the first dose of the beverage and very quickly after consumption. The relief was temporary and lasted from 2h to 4.5h. After continuing the treatment for weeks, all the patients were experiencing relief for 4.5h after drinking the active beverage. It's also mentioned that when symptoms did appear (maybe between doses or when tested with placebo, I'm not clear), they were milder.


- The oxalate active beverage seems to decrease Lactate levels in the patients. One patient had Lactate tested after reading (which caused him brain fog, pain and head pressure) and the level was pretty high. After consuming the standard 250ml of the active beverage, his Lactate levels dropped from 6.2 to 0.5 mrnol/L and the symptoms disappeared. Also, all the other patients showed normal Lactate levels while being treated with the active beverage and they experienced a drastic increase in Lactate after discontinuation (along with dramatic worsening of their symptoms). I'm not clear if they got worse than their pre-treatment baseline or not.

 

[AndrewR]

Thank you @enduin!

 

[Frenchguy]

I think the inventors are in contact with Ron Davis to discuss diagnosis test

 

[Frenchguy]

I discussed with a girl who is treated and doing well. This seem real... Incredible

 

[mariovitali]

So does that mean that not one ME/CFS Researcher has ever looked at Lactate Levels?