There are different varieties of spinaches that we use in Indian dishes. To my knowledge there are 7-8 common varieties that we use. Each has very different properties. Many more medicinal spinaches are used by ayurveda for making medicines. So lets go about finding out what that elusive spinach that they are using is ! lets do it folks !. I am literally sick and tired of being sick and tired.
Article about new potential treatment by Victoria Bohne, in Norwegian
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MonkeyMan
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Yes!!! But how?
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Do we know where the couple are living ? The exact location ? Anybody from this forum who lives there or nearby ? If the couple are growing the spinach in their backyard then most probably this spinach will be available in their vegetable market also. If we can get a photo of that spinach then we can find out its botanical name. That is the first step.
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They mentioned in the patent that they had been using ingredients from just Italy at some point in time (in 2017). From both Italy and Norway in 2016.
"Seasonal variation of soluble oxalate content was documented in active drinkable: 177.5 mg per dose (ingredients are from Italy, November 2017, Tab. 2) and 152.5 mg per dose (ingredients are from Norway and Italy, December 2016, Tab.2)."
@Ben H @Janet Dafoe (Rose49)
Hello,
Would it be possible to know what Ron Davis thinks about diagnosis and treatment by oxalates ?
I really hope that the secrecy culture of these inventors did not pass to Stanford.
We just want to know, as sick people who have hope in OMF,
David
Hello,
Would it be possible to know what Ron Davis thinks about diagnosis and treatment by oxalates ?
I really hope that the secrecy culture of these inventors did not pass to Stanford.
We just want to know, as sick people who have hope in OMF,
David
MonkeyMan
Senior Member
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@@Ben H @@Janet Dafoe (Rose49)
Dear Rose and Ben, yes please can you share Ron's thoughts on this treatment? It looks very promising to a non-scientist like myself. Thank you.
MonkeyMan
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Now that summer is officially ending, I wonder if Bohne Askoy have put their Facebook posts back up. Anyone know? This whole thing seems a bit fishy to me.
This homepage is new, I think. Maybe it replaced the information on FB .
https://www.english.bohneaskoy.no/the-discovery
Eirran
Vice Chairman Norwegian ME Association
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A lot of things have happened here.
They send two applications to the Regional Commitees for Medicine and Healths Research etichs (REK).
One to get approval to publish an article about the diagnostic tool they say that have developed, and one to publish result on self-Medicine treatment for 18 patients.
REK rejected both applications. In their rejections they stated that Bohne had not done their Research in an etichal manner and that they have broken Norwegian law by treating patients before seeking approval.
REK send a copy of the rejection to the Norwegian Board of Health Supervison.
Bohne have now about 2 weeks to appeal the rejection.
But they reacted with anger, and they withdrew themselves from a support group on Facebook.
They also said that they would take their Discovery out of Norway.
Link to the REK decisions (only in Norwegian)
https://helseforskning.etikkom.no/p...1042549&p_document_id=1042549&dato=15.08.2018
https://helseforskning.etikkom.no/p...1042989&p_document_id=1042989&dato=15.08.2018
Eirran
Vice Chairman Norwegian ME Association
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The Norwegian ME Association had agreed that Bohne could send an application for financial support.
But Bohne misunderstood one paragraph in the letter and thought they would need a petition from patients to get support. (To their Defense the parapgraph was not as clear as it should have been).
When the misunderstanding was brought to light, they again reacted with anger and said that they would not apply for financial support.
The whole Process has unfortunately been paved with misunderstanding and poor scientific methods which Bohne have reacted to with anger and harassments of supporting pasients.
But Bohne misunderstood one paragraph in the letter and thought they would need a petition from patients to get support. (To their Defense the parapgraph was not as clear as it should have been).
When the misunderstanding was brought to light, they again reacted with anger and said that they would not apply for financial support.
The whole Process has unfortunately been paved with misunderstanding and poor scientific methods which Bohne have reacted to with anger and harassments of supporting pasients.
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MonkeyMan
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Thanks Helen and Eirran, very helpful updates!
I hope the best for Bohne and her family that they get the results they have been struggeling and worked so hard for all these years. I also hope this for my fellow patients.
I have not seen any harraments from patients, but what I have seen is some really bad behaviour on facebook from Bohne herself. It even went so far that she refused a sick patient the medicine if it came to that stage that it got to be a medicine. Not very professional, and seems to me that a total lack of basic communication skills. Also - turning to anger in public, is not a very good idea. The dissapointment is understandable, but she seems very aggressive in her way to communicate with people. I dont like that. Not one bit.
I have not seen any harraments from patients, but what I have seen is some really bad behaviour on facebook from Bohne herself. It even went so far that she refused a sick patient the medicine if it came to that stage that it got to be a medicine. Not very professional, and seems to me that a total lack of basic communication skills. Also - turning to anger in public, is not a very good idea. The dissapointment is understandable, but she seems very aggressive in her way to communicate with people. I dont like that. Not one bit.
Eirran
Vice Chairman Norwegian ME Association
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By harassment I meant Bohnes behaviour as you pointed out.
Had they planned a new study with new patients I believe that their application would have been approved.
That would also have benifited the patients that already have tried the mediicine.
Let’s hope that when the commotion have calmed down they would get help to plan a new study.
Some of the patients that have improved greatly of course fear that they will not be able to continue recieving the «smoothie» and relapse again.
Had they planned a new study with new patients I believe that their application would have been approved.
That would also have benifited the patients that already have tried the mediicine.
Let’s hope that when the commotion have calmed down they would get help to plan a new study.
Some of the patients that have improved greatly of course fear that they will not be able to continue recieving the «smoothie» and relapse again.
I truly hope that. Bohne`s results is very promising and gives hope for a lot of people. And hope is important with this disease.
She had alot of supporters on facebook aswell, and many of them eager and willing to support in any way they could. But they shut the group down in frustation and anger (it seems).
She also mentioned some "harrasment" from someone in the Norwegian ME foundation on the online fundraiser, but never actually got to see that for my self. I believed that to be one of the causes for this dramatic reaction aswell.
She had alot of supporters on facebook aswell, and many of them eager and willing to support in any way they could. But they shut the group down in frustation and anger (it seems).
She also mentioned some "harrasment" from someone in the Norwegian ME foundation on the online fundraiser, but never actually got to see that for my self. I believed that to be one of the causes for this dramatic reaction aswell.
Eirran
Vice Chairman Norwegian ME Association
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What she said was harrasment was a follows:
When she launched her petition to get financial support from Norwegian ME Association, both our assistent general secretary and I said that a petition like this was not needed and that financial support from NMEF was givien solely on the basis of scientific evaluation.
None of us were aware of the paragraph in the letter written by our chairman that could be misunderstood. She reacted angrily to what we wrote.
Our chairman was inaccessible due to work travel so we could not see the exact wording he had used. he also could not respond to the email Bohne wrote in complaint about what we wrote until the next day.
A new email has been sent clearifying what was original meant and that what we wrote was in fact the right procedure in applying for financial support from NMEF.
Yes hope is important in ME, and I do believe that with her and her husbands theoretical and scientific Background that they could have found something (based on Oxal acid or deratatives of that as far as I know) that can help some ME patient.
Bohnes have made it perfectly clear that this is not a cure but something that the patients have to take for the rest of their lives much like insulin for diabetes patients.
But there is also a fact that someone has not responded well to the treatment. One who tested this «smoothie» became blind for 40 minutes. I do not know if this was because of experiments with doses or what actually happened.
There has also been raised some concern about the fact that according to the article in 2016, Bohne had returned to work while in the application to REK she describe herself as housebound. She also claimed that she now had severe Cognitive impairment.
It is therefore of the utmost importance that things are done «by the book»
When she launched her petition to get financial support from Norwegian ME Association, both our assistent general secretary and I said that a petition like this was not needed and that financial support from NMEF was givien solely on the basis of scientific evaluation.
None of us were aware of the paragraph in the letter written by our chairman that could be misunderstood. She reacted angrily to what we wrote.
Our chairman was inaccessible due to work travel so we could not see the exact wording he had used. he also could not respond to the email Bohne wrote in complaint about what we wrote until the next day.
A new email has been sent clearifying what was original meant and that what we wrote was in fact the right procedure in applying for financial support from NMEF.
Yes hope is important in ME, and I do believe that with her and her husbands theoretical and scientific Background that they could have found something (based on Oxal acid or deratatives of that as far as I know) that can help some ME patient.
Bohnes have made it perfectly clear that this is not a cure but something that the patients have to take for the rest of their lives much like insulin for diabetes patients.
But there is also a fact that someone has not responded well to the treatment. One who tested this «smoothie» became blind for 40 minutes. I do not know if this was because of experiments with doses or what actually happened.
There has also been raised some concern about the fact that according to the article in 2016, Bohne had returned to work while in the application to REK she describe herself as housebound. She also claimed that she now had severe Cognitive impairment.
It is therefore of the utmost importance that things are done «by the book»
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I would aslo like to try this myself, how is it going for you?
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It didn’t go very well for me. I gave up trying pretty quickly because I felt a crash coming on. To go into detail I’d need to find my notes, but I recall a few days of huge improvement in the few hours after a drink. After a few days it was complete chaos. In between drinks I started getting bad headaches and eyeball pain, worse fatigue, worse brain fog. The good effects were greatly diminished and didn’t last long at all. I felt worse than before I started the whole trial.
There was a lot happening at the time though, it was just my experience. I’m now a strong believer that there’s something to this! I wonder if it acts in a similar way to DCA. I have no idea. I wish we knew.
There was a lot happening at the time though, it was just my experience. I’m now a strong believer that there’s something to this! I wonder if it acts in a similar way to DCA. I have no idea. I wish we knew.
wigglethemouse
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It seems that the bohneaskoy.no domain is no longer active. The Norwegian domain registry controller returns an error for that domain in their test.
https://dnscheck.norid.no/tree.pl?t...f621dd7750ec69f16d1e45e7039a7488697ff80838f5b
MonkeyMan
Senior Member
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Thanks for the update.
Quietly closing their website is what people do when they realize that their pet theory or treatment for ME/CFS ain't gonna work. Martin Pall did the same years ago when his Nitric Oxide theory fell apart.