Article about new potential treatment by Victoria Bohne, in Norwegian

[AndrewR]

Read it on their facebook page. Not that OMF had declined, just responded with little interest. Anyway. Very positive and so stocked about it going in the right direction and cant wait to see the outcome of this. Hopefully the government also comes onboard eventually .. That would probably really push it in the right direction!

 

[Gemini]

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

I think several have, here's a PubMed listed lactate level study 2009 [my bold]:

Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study.
Mathew SJ1, Mao X, Keegan KA, Levine SM, Smith EL, Heier LA, Otcheretko V, Coplan JD, Shungu DC.

Abstract
Chronic fatigue syndrome (CFS) is a controversial diagnosis because of the lack of biomarkers for the illness and its symptom overlap with neuropsychiatric, infectious, and rheumatological disorders. We compared lateral ventricular volumes derived from tissue-segmented T(1)-weighted volumetric MRI data and cerebrospinal fluid (CSF) lactate concentrations measured by proton MRS imaging ((1)H MRSI) in 16 subjects with CFS (modified US Centers for Disease Control and Prevention criteria) with those in 14 patients with generalized anxiety disorder (GAD) and in 15 healthy volunteers, matched group-wise for age, sex, body mass index, handedness, and IQ. Mean lateral ventricular lactate concentrations measured by (1)H MRSI in CFS were increased by 297% compared with those in GAD (P < 0.001) and by 348% compared with those in healthy volunteers (P < 0.001), even after controlling for ventricular volume, which did not differ significantly between the groups. Regression analysis revealed that diagnosis accounted for 43% of the variance in ventricular lactate. CFS is associated with significantly raised concentrations of ventricular lactate, potentially consistent with recent evidence of decreased cortical blood flow, secondary mitochondrial dysfunction, and/or oxidative stress abnormalities in the disorder.

www.ncbi.nlm.nih.gov/pubmed/18942064

 

[Eiren]

I'm interested at the similarity between this treatment and the Wahl's protocol. My first thought when reading Wahl was "Holy oxalates, Batman!"

My other thought was, like Wahl, whether the treatment works because of the reasons they think it does. Or if it works for a different reason.

I've been thinking about buying a supplement that says it contains oxaloacetate but it's pretty expensive. I'll be honest and be the first to admit that I've been making kidney stone smoothies (anyone else?)... I know it could be dangerous but I'm trying to be careful and smart about it. I add sugar like the inventors talk about, I aim for less oxalates per day than they talk about, I divide it into 4 small servings, it's really not that much spinach (I used to eat spinach almost daily a long time ago... not quite as much). If things start to feel weird at any point I'll stop. So far I feel good. No idea if it's anything like the recipe they use...

Kidney stone smoothies...lol. I'm guessing it's beets and spinach and ... chocolate? You add regular table sugar to it? My thought was that the sugar in beets might be enough, plus I usually put half a frozen banana in my smoothies. I'm wondering how much more sugar they would recommend. I don't do well with a lot of sugar.


I'm also curious about how this treatment can scale up. Does it have to be made with fresh produce? I put in my smoothies a vitamin/vegetable powder that contains lots of powdered veggies. If powdered veggies and etc. would be effective (even just half-way as effective) it would be relatively simple to formulate it and sell it (with detailed instructions for use).



As a side note, I also wonder how well-established the link is between dietary oxalates and kidney stones. Or if it's like cholesterol, only an issue for a very small percentage of people whose physiologies function differently. Just like science is now realizing that cholesterol is actually pretty important, I wonder if oxalates are something of the same story. Actually kinda important (unless you have a rare physiology) and maybe more important if you have a physiology which has been thrown off-kilter.

 

[mariovitali]

I have only my mobile where I am so cannot write too much. A thought provoking post coming soon regarding this patent ;-)

It may be of interest that Spinach is not only high in Oxalates but it is very rich in Vitamin K and also something called dolichol.

 

[babeng]

I don't know what to think of this. They came up with this potential treatment over four years ago, and still say they can't share it with others becasue of rules with regard to patent filing and regulations in Norway. The argument that it can be dangerous doesn't seem very credible to me any more, given that - from what I understand - it was only dangerous when they experimented with the treatment. Now that it's developed and each patient get the same treatment, the most logical reason I can think of to still keep it a secret must be financial. I could be wrong, but if this is the case, that's pretty mind-blowing given their first hand experience with this disease.

 

[Frenchguy]

I don't know what to think of this. They came up with this potential treatment over four years ago, and still say they can't share it with others becasue of rules with regard to patent filing and regulations in Norway. The argument that it can be dangerous doesn't seem very credible to me any more, given that - from what I understand - it was only dangerous when they experimented with the treatment. Now that it's developed and each patient get the same treatment, the most logical reason I can think of to still keep it a secret must be financial. I could be wrong, but if this is the case, that's pretty mind-blowing given their first hand experience with this disease.

Possible that money is a big factor. They have deposited a patent which I think is the fact they have discovered something interesting to treat the disease and want to protect their idea.

I would heard about OMF and what they think. If this works, and I think given the discussion with people treated and the photos, I think the good way to proced is to publish their study for sharing with medical world.

Many people have problem with lactate. Me too.
This potential treatment can maybe treat a great % of ME CFS.

We don't have 5 years, à campounding pharmacy will be able to make the solution.
This is probably not the best treatment for ME but at present, this is the only treatment which works without big side effects like cyclo.

It is interesting to note that people don't have sore throat under treatment (I judge this symptom as an indicator of my approach to crash). If they stop, their blood lactate level drop after 4 days and the sore thorat reappear.

Ron Davis is in the right track when he think that the dysfunctional metabolic pathway can cause T cell activation and possibly pro inflammatory cytokine secretion.

When you give IFN to people (to treat a disease), they have flulike symptoms and sore throat.

Now it seem very concevable that treating immune system will not be necessary to control the disease, but treating the metabolic defect will be sufficient. This may supress the potential immune signalling.
Maybe we need diabete tools to measure lactate and adjust treatment lol.

They have contacted many great norvegian researchers and they have little interest.
Researchers don't like the idea of treating when they don't understand how it works. But in patient view, we just want to get better with little side effect. And if it like in France, Doctors are unfortunately a little proud.

I really hope Standford will looks properly.

@Ben H @Janet Dafoe (Rose49)

 

[JES]

I don't know what to think of this. They came up with this potential treatment over four years ago, and still say they can't share it with others becasue of rules with regard to patent filing and regulations in Norway. The argument that it can be dangerous doesn't seem very credible to me any more, given that - from what I understand - it was only dangerous when they experimented with the treatment. Now that it's developed and each patient get the same treatment, the most logical reason I can think of to still keep it a secret must be financial. I could be wrong, but if this is the case, that's pretty mind-blowing given their first hand experience with this disease.

Actually in the patent document they describe quite in detail the composition even though the exact ingredients aren't obvious:

Concentrations of soluble oxalates were measured in different recipes two times to exclude significant seasonal variation (Tab. 2). The lowest concentration of soluble oxalates was measured in 6-Quenched drinkable, followed by recipe 3 -Rhubarb and 1 -Strawberry. The highest concentrations were measured in 5-Active drinkable and 4-Banana. Presence of satisfying and long-lasting therapeutic effect was experimentally confirmed only for recipe 5 -Active drinkable. Effect from 4-Banana was unpleasant and too tough, while effect from the 3 -Rhubarb was unpleasant and effects from both were not lasting long enough either on the short-term of 5 hours or on long-term of 14 days. There was no or reduced effect from the 1 -Strawberry drinkable, despite that concentration of soluble oxalates was in the same range as for 5-Active drinkable: 0.69 vs 0.61 mg/L. At least three parameters, which we did not solved in this attempt, could explain the reduced or lack of effect from 1 -Strawberry: the ration between soluble and insoluble oxalates and types of soluble oxalates and ratio between them.

Quantification of the total oxalates in the solutions after treatment with HC1 failed. However, the concentration of remaining in solution soluble oxalates after treatment with CaC03 and before treatment could be compared. The calculated ratio soluble .'insoluble in 1- Srawberry was 1.5, while in 5-Active drinkable the corresponding ratio was 1.9. This ratio somehow mirrors the composition of types of soluble oxalates in different recipes.

We concluded that to achieve and maintain a pleasant therapeutic effect with satisfying pain relief and long-term effect the concentration of soluble oxalates should be above 0.39 mg/L as in 3-Rhubarb but less than 0.87 mg/L as in 4-Banana. Additionally, ratio between soluble and insoluble oxalates might have influence on the therapeutic effect. Because, therapeutic effect was documented only from 5-Active drinkable and not from 1 -Strawberry, we conclude that the ratio between soluble and insoluble oxalates should have influence on the therapeutic effect.

So basically they tell us what vegetables/fruits didn't work and what concentration of soulable oxalates and ratio between soulable and insoulable oxalates we should aim for. Given this information, it shouldn't be too hard to figure out ways to achieve this kind of mixture. Also it was mentioned that the drinkable was purely made from vegetables, greens, fruits and nuts, so I would assume with ingredients from any supermarket. They also mention specifically spinach in one table under the active drinkable label, so we know that's at least one ingredient.

If this drinkable really does work, it is much better news even than having a drug discovered, as drugs take time to get approved and may not be available to everyone due to financial and other restrictions.

 

[babeng]

Also it was mentioned that the drinkable was purely made from vegetables, greens, fruits and nuts, so I would assume with ingredients from any supermarket.

This is what makes me question their motives. You have a promising treatment that can be available to everyone, but you choose not to share any details because of "regulations". I mean, if you don't care for the financial aspects, you don't care for the regulations/patent filing either, but instead focus on sharing knowledge and experience.

From what I've read from their answers on facebook and articles, I suspect that their interest in contacting other researchers is for their own self interests, not the patients. For instance, when asked if they've contacted fluge/mella after their article on the PDH enzyme, their answer is that fluge/mella should contact them because they discovered the link to pdh earlier. And since they didn't want to share any details at all with the Norwegian cfs association, I'm not so sure they will share spesifics with other researchers.

I don't get their approach to this at all. If it's financial motives keeping them from sharing, they should do the opposite since they control the patent. They should share knowledge and experience. And then they can develop a more convenient and perhaps effective treatment through a patent protected drug, than todays somewhat inconvinient alternative of making a fresh blend each day four times a day.

@JES Maybe someone with a more relevant background similar to Bohne can piece together the puzzle...
@Frenchguy Do not even the patients getting the treatment know the ingredients?

 

[melihtas]

Not-so-secret ingredient of 5-active drinkable product is spinach. They added 24,59 gr sugar (mostly fructose). In addition to the drink, they supplemented 1200 mg alpha-lipoic acid + 12 mg thiamine + 27 mg niacin + 2.5 mg riboflavin daily.

 

[enduin]

It's pretty obvious that the main ingredient in the effective recipe is spinach, both because the recipe is called "5-spinach" and because spinach is one of the vegetables with the highest content of oxalates. And it's true that the content of soluble oxalate and ratio between soluble/insoluble is known, but the main problem is to understand if the secondary ingredients are crucial for the recipe to work or not. And I suspect they might be important because otherwise I would find it hard to believe that if it were just about the spinach, no one in the world would have figured out by now that spinach relieves the symptoms of CFS. I mean it's not like spinach is a rare and exotic thing, it's pretty common for people to eat it.

What we do know is that the ALA, thiamin and riboflavin are not necessary for the recipe to work, as they were only added later on and found to have a synergistic effect. The recipe "5-spinach" was working just fine even without the other stuff.

Lastly, I'm pretty sure that they didn't just add fructose to spinach juice and presto they got the recipe. The fructose content indicates that in addition to fructose there is one or more fruits in the recipe. At the same time, looking at the fat and protein content, even though they mention nuts, I doubt they used any nuts in the final recipe, otherwise fat and protein would be quite a bit higher.

 

[Frenchguy]

This is what makes me question their motives. You have a promising treatment that can be available to everyone, but you choose not to share any details because of "regulations". I mean, if you don't care for the financial aspects, you don't care for the regulations/patent filing either, but instead focus on sharing knowledge and experience.

From what I've read from their answers on facebook and articles, I suspect that their interest in contacting other researchers is for their own self interests, not the patients. For instance, when asked if they've contacted fluge/mella after their article on the PDH enzyme, their answer is that fluge/mella should contact them because they discovered the link to pdh earlier. And since they didn't want to share any details at all with the Norwegian cfs association, I'm not so sure they will share spesifics with other researchers.

I don't get their approach to this at all. If it's financial motives keeping them from sharing, they should do the opposite since they control the patent. They should share knowledge and experience. And then they can develop a more convenient and perhaps effective treatment through a patent protected drug, than todays somewhat inconvinient alternative of making a fresh blend each day four times a day.

@JES Maybe someone with a more relevant background similar to Bohne can piece together the puzzle...
@Frenchguy Do not even the patients getting the treatment know the ingredients?

They know the treatment but are not allowed to share.

The good new is they will publish on diagnosis test and treatment. Papers are in the regional comitee for validation.

I think Ron Davis have the papers in hand but no news ...

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.

I was septic before but now I have to admet that they found a treatment which works for a subgroup of people.

Now, we have to find the preparation. If I find it, I will try to find à campounding Phamarcy to prepare the solution.

If anyone have infos about that,

 

[melihtas]

It's pretty obvious that the main ingredient in the effective recipe is spinach, both because the recipe is called "5-spinach" and because spinach is one of the vegetables with the highest content of oxalates.

I am not trying to promote this oxalate theory. It doesn't even make sense to me. I copied and pasted information from the patent paper because the ingredients were asked.

The drink is not called "5-spinach", it is "5-active". Also, banana and strawberry contain more soluble oxalate but they don't give the desired long-lasting effect according to the paper. So, it is being spinach is not that obvious without looking at the table above.

About the sugar content, I don't think it is coming from a fruit but it is possible. In the paper they describe a situation when a patient was given an active drink with 25% reduced sugar, the patient experienced a vision loss and recovered after given sugar missing from the drink (6,25 gr). 6 gr of sugar making so much difference sounds ridiculous to me.

ETA: This is from the paper:

It can be concluded from this example that sufficient amount of carbohydrates (sugars) should be used in combination with soluble oxalates in drinkable to avoid extreme symptoms worsening.

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.

Note: I wrote this message twice because I accidentally deleted the first one while trying to edit it.

 

[MonkeyMan]

It's pretty obvious that the main ingredient in the effective recipe is spinach, both because the recipe is called "5-spinach" and because spinach is one of the vegetables with the highest content of oxalates. And it's true that the content of soluble oxalate and ratio between soluble/insoluble is known, but the main problem is to understand if the secondary ingredients are crucial for the recipe to work or not. And I suspect they might be important because otherwise I would find it hard to believe that if it were just about the spinach, no one in the world would have figured out by now that spinach relieves the symptoms of CFS. I mean it's not like spinach is a rare and exotic thing, it's pretty common for people to eat it.

I eat tons of spinach, only because it is so good for you; it has no effect on my CFS.

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

Meanwhile, can someone help to understand: is it something that patients have to take every day "forever", or can they gradually wean themselves off it?

 

[melihtas]

I eat tons of spinach, only because it is so good for you; it has no effect on my CFS.

When cooked soluble oxalate levels are reduced greatly.

 

[Frenchguy]

They have to drink the solution every 4,5h

 

[MonkeyMan]

When cooked soluble oxalate levels are reduced greatly.

Interesting; I did not know that.

 

[MonkeyMan]

They have to drink the solution every 4,5h

For the rest of their lives?

 

[WinterWren]

@Eiren That’s an interesting thought about the Walh’s protocol... Yes about the spinach and cocoa, haven’t tried beets yet! I haven’t thought enough about the types of sugar but tried to get higher fructose by adding banana and honey, has to be a lot to get the 24g sugar per serving. Almost no sucrose in their recipe which is table sugar. I use fresh spinach only. A bit of raspberry for Oxalate and flavour but this is probably wrong to use, may be messing up the soluble vs insoluble ratio? I hope smarter people figure this out. It has had a strong affect on me, mostly positive, but I wish I didn’t have to be so unsure about what I’m doing. What I’ve noticed come back is my ability to see and speak normally. Seems too much for a placebo effect but I have a feeling my recipe is way off so I’m kind of all over the place... don’t want anyone copying what I’m doing and having bad experiences. Wish we knew more about the dangers they talk about!

 

[Frenchguy]

Effect of different cooking methods on vegetable oxalate content.
Chai W, et al. J Agric Food Chem. 2005.
Show full citation
Abstract
Approximately 75% of all kidney stones are composed primarily of calcium oxalate, and hyperoxaluria is a primary risk factor for this disorder. Nine types of raw and cooked vegetables were analyzed for oxalate using an enzymatic method. There was a high proportion of water-soluble oxalate in most of the tested raw vegetables. Boiling markedly reduced soluble oxalate content by 30-87% and was more effective than steaming (5-53%) and baking (used only for potatoes, no oxalate loss). An assessment of the oxalate content of cooking water used for boiling and steaming revealed an approximately 100% recovery of oxalate losses. The losses of insoluble oxalate during cooking varied greatly, ranging from 0 to 74%. Because soluble sources of oxalate appear to be better absorbed than insoluble sources, employing cooking methods that significantly reduce soluble oxalate may be an effective strategy for decreasing oxaluria in individuals predisposed to the development of kidney stones.

 

[enduin]

I am not trying to promote this oxalate theory. It doesn't even make sense to me. I copied and pasted information from the patent paper because the ingredients were asked.

The drink is not called "5-spinach", it is "5-active". Also, banana and strawberry contain more soluble oxalate but they don't give the desired long-lasting effect according to the paper. So, it is being spinach is not that obvious without looking at the table above.

About the sugar content, I don't think it is coming from a fruit but it is possible. In the paper they describe a situation when a patient was given an active drink with 25% reduced sugar, the patient experienced a vision loss and recovered after given sugar missing from the drink (6,25 gr). 6 gr of sugar making so much difference sounds ridiculous to me.

ETA: This is from the paper:


Note: I wrote this message twice because I accidentally deleted the first one while trying to edit it.

I'm not really sure what you are trying to say. 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.

And as far as sugar goes, I'm again just following Occam's razor here. They mentioned the beverage being made of vegetables and fruit. Fruit is the most common source of fructose. Chances are that the beverage contains fruit. Now, that really severe reaction from the low sugar version would not make any sense if we were talking about a healthy individual, but with CFS nothing surprises me anymore. There are people here who experience very severe reactions with such minute amounts of supplements or drugs that it beggars belief. Yet it's all true.

Additionally if, like I think, the fructose is coming from fruit, in order to reduce the carb content, they must have greatly reduced or even eliminated the fruit that was part of the recipe, therefore eliminating other chemicals contained in the fruit along with the fructose. I wouldn't be surprised if the reaction was not due to the lower carb content per se, but rather to the lack of some other chemicals in the fruit. When they reintroduced the fructose, they might have done so by reintroducing the fruit where the fructose was coming from.