Article about new potential treatment by Victoria Bohne, in Norwegian

[Frenchguy]

I think the solution is based on filtrate water after spinach boiling.

They take the 250ml water with oxalates, and can add other things

 

[melihtas]

The drinkable solutions must thus either be mixed of ingredients containing the sufficient amount of sugar, or a mix of carbohydrates (sugars) can be added to the drinkable in a same composition (ratio) and dose as in Tab. 1.

They say you can use a fruit containing sugar or you can add sugar to the drink, it doesn't make difference.

The active recipe is called "5-active (spinach)". If they put "spinach" in the name chances are that the main ingredient is in fact spinach. And knowing that spinach is one of the food with the highest oxalate content, it makes it pretty obvious that spinach is one of if not the main ingredient in this concoction.

They don't use spinach anywhere with 5-active other than in the table I posted. It is only called "5-active". I posted that table to make the connection and make it obvious that the active ingredient is spinach. Also, we are not looking for one of the main ingredients, we are looking for the one.

 

[Frenchguy]

Ok

 

[babeng]

They know the treatment but are not allowed to share.

If they know the treatment, why do they have to live nearby? From what I've read some patients have moved to live nearby to receive the treatment. Why can't they just move back home and make the blend themselves?

The good new is they will publish on diagnosis test and treatment.

Do you know if they will specify the exact treatment? My guess is that they will continue in the lines of the patent filing, not stating the specifics.

I am a bit surprised but after discussing with one patient, they don't want money. Patients proposed money for their work but they refused.

This is not what I think of when I wonder if they are driven by financial motives. Some "small" fees from twenty patients does not make them rich. Their possible financial motives comes from developing a standard treatment through a patentet drug, which is available to the masses. Why keep a lid on the specifics for over four years if it's not financial?

There are some extremely intelligent people contributing to this discussion board; I'm betting they can figure out the contents of this magic elixir.

I think more people would join this thread if it was placed under the "Latest ME/CFS Research" sub-forum. It seems like topics under that sub-forum is more debated...


Given that they have kept this treatment secret for four years, I'm afraid that their goal is to continue to do this until they develop a patented drug. And even though the drug eventually proves to work effectively, we all know how much time that takes..

 

[JES]

I doubt the patients were told the exact procedure of making this drinkable. There is a rule of thumb that only so many persons can keep a secret. IMO if all the patients know the recipe then I find it unlikely that someone wouldn't have already shared it "accidentally" with their friends and family etc., or with other patients especially if it's something that would save lives.

From my understanding, this treatment originated from VB with her husband experimenting different things on herself to see what helped her disease. If they were able to reach a working recipe beginning with n=1 patients, then it can't be very hard for a community the size of PR to trial and error this out, given that we already know the main ingredient.

Just a disclaimer, I don't recommend anyone to self-experiment and put themself into potential danger. But for someone that is in moderate to mild condition, self-treating with oxalate rich fruit sources doesn't sound much different to what we are doing already with various dietary supplements.

 

[Judee]

but the patients have to live nearby since the drug has to be made daily by Bohne

How then can this be a marketable substance, let alone patentable?

Just makes me wonder.

 

[pattismith]

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.

oxalate is a Pyruvate Carboxylase inhibitor (PC is in the mitochondrion), this may increase pyruvate concentration in the mitochondrion...

 

[Hip]

I few years ago a family member gave us a lot of rhubarb which she had grown herself; and so in one week I had rhubarb dessert perhaps 3 or 4 times. That seemed to trigger a bout of depression and a state of generally feeling worse, so ever since then I have viewed high doses of oxalate as something that may be detrimental for me.

Of course, in some ME/CFS treatments, you can feel worse before you getter better.

 

[AndrewR]

News about this.. According to the inventor, Dr. Davis has agreed to read the manuscript for the first article they are putting out about diagnostics. Also another person in high regards in Norway is also included. Things are moving forward it seems. Wich is great news

 

[boolybooly]

My own take on spinach is that it is on my avoid list due to being a high amine food.

Amines are stimulating and can act like caffeine.

I know of one ME patient who took Guarana (charismatic caffeine) to help with ME under a doctors guidance.

I felt this was a misguided approach for the long term, having experienced problems myself with bad reactions to caffeine specifically after onset which exacerbated greatly a tendency to neurological hypersensitivity and mental hyperactivity in my illness, a condition which encouraged me to battle the underlying CFS while undiagnosed and caused a daily push crash relapse cycle for ten years before diagnosis. This lead to profound crises of mental and physical dysfunction, while in my confusion the correlation of these problems with underlying significant immune dysfunction went unrecognised.

I can understand why people who take a stimulant food with a lot of sugar and antioxidants added would get an energy rush but I don't think it would be sustainable in the long term or healthy for the condition I have. Not that I have anything against antioxidants, they do seem to help, just not stimulants or high glycemic foods.

So it does not sound like a cure to me. That is my personal take on it fwiw. It would need rigorous scientific testing and to be reduced to a pill recommended by (dare I say it!?) NICE for me to consider it seriously.

 

[AndrewR]

It is a combination of several things and not just spinach to address a particular enzym wich they have found to be faulting. The same enzym that Fluge and Mella also believes to be a problem, from their own research.

 

[enduin]

One thing I forgot to mention in previous posts, my wife has tried oxaloacetate (Benagene) in the past with zero results. Obviously it's a sample of 1, but I suspect oxaloacetate is not what is important here.

 

[perrier]

By c

News about this.. According to the inventor, Dr. Davis has agreed to read the manuscript for the first article they are putting out about diagnostics. Also another person in high regards in Norway is also included. Things are moving forward it seems. Wich is great news

By chance, I had contact with a person who did this treatment; The person was ill for more than a decade and a half, bed ridden, and unable to attend to daily needs. After a year on the treatment the person is now functioning independently.

Apparently there are several such cases.

 

[perrier]

It is a combination of several things and not just spinach to address a particular enzym wich they have found to be faulting. The same enzym that Fluge and Mella also believes to be a problem, from their own research.

Yes, I also heard that Fluge and Mella have confirmed some of this thesis.

 

[MonkeyMan]

By c

By chance, I had contact with a person who did this treatment; The person was ill for more than a decade and a half, bed ridden, and unable to attend to daily needs. After a year on the treatment the person is now functioning independently.

Apparently there are several such cases.

Interesting. So this person is still taking the treatment every 4 hours or so? Just wondering if this is a lifetime commitment (not that I wouldn't be willing to do that, I would).

 

[mariovitali]

@perrier

Time required for recovery sounds about right. If this indeed works , I don’t know if it addresses the potential root cause.

Also, do they follow the regimen to this day?

 

[AndrewR]

Not sure either if that enzyme is the root cause.. Why is that enzyme faulting in the first place? Atleast this can be a treatment option until we know more about this disease.

 

[perrier]

Interesting. So this person is still taking the treatment every 4 hours or so? Just wondering if this is a lifetime commitment (not that I wouldn't be willing to do that, I would).

I don' know and don't have access to this information, alas.

I'm very anxious to hear what Dr Davis thinks of all this.

 

[perrier]

@perrier

Time required for recovery sounds about right. If this indeed works , I don’t know if it addresses the potential root cause.

Also, do they follow the regimen to this day?

I don't know. I don't have access to the full information.

 

[Frenchguy]

@perrier

Time required for recovery sounds about right. If this indeed works , I don’t know if it addresses the potential root cause.

Also, do they follow the regimen to this day?

Yes Mario, they have to follow the treatment every day, like diabete people.

If they stop, 3/4 after symptoms return but they return mild