Patentscope: Prevention and/or treatment of chronic fatigue syndrome

More than oxalat/spinach, as I read, you should have carbs at the same time, and also daily vitamin B1,B2,B3 and Alpha Lipoid Acid, ALA as much as 1200mg.

100 gram spinach is not so much I think, I have eaten that before. Maybe the vitamins can make a difference? It is kind of hard to understand this.
I know one person that has really signifant improvements. I do believe that they have something good, but hmm...
 
Another patient I know is now reporting that after starting treatment in one of their studies she is now 100% recovered and have been for months.

If I understood her correctly she has been given some sort of medication that she takes daily, and if she forgets her symptoms come back.

I’m very sceptical, but then I have no idea what she is taking. If it’s too good to be true...:wtf:
 
Helen said:
I´m a bit confused as the supplement that first was discussed in the thread on PR is a supplement called Peptide+ or in English https://pepticin.com/. It is available as a pill. Maybe someone can sort this out.
Click to expand...

This makes me think of the various H2 antihistamines that some people are helped by. Seems more legit than eating lots of spinach. Or maybe not.

ETA: I checked the Norwegian site for the supplement. Appears to be hydrolyzed salmon peptide that "may be helpful" for chrons, ibs, etc. I call BS.
 
Last edited:
andypants said:
This makes me think of the various H2 antihistamines that some people are helped by. Seems more legit than eating lots of spinach. Or maybe not.

ETA: I checked the Norwegian site for the supplement. Appears to be hydrolyzed salmon peptide that "may be helpful" for chrons, ibs, etc. I call BS.
Click to expand...

Nah we at PR thought it was the salmon peptide supplement due to Victoria Bohne's past involvement with the fish industry, but it turned out to be wrong. The treatment in question is an oxalic acid based drinkable, as described in their patent doc here.
 
Kalliope said:
Today came a rejection from Regional Committees for Medical and Health Research Ethics according to Victoria Bohne's Facebook page which means that no data from Bohne are approved for publication. So it seems whatever this is, it's back to square one.

To be frank I'm none the wiser of any of this..
Click to expand...

Not surprising, since for research you need etichs approval _before_ starting treatment in humans and collecting blood... Isn't she a former marine scientist? This surely should be known?

Short description of the study/case study they applied approval for (the rest of text in norwegian). Both describes how the treatment or bloodtest have already been done when they applied:

.
Case rapport: Self-treatment of 18 persons affected with ME/CFS/SEID. Life-long compensatory therapy for normal functioning of Pyruvate Dehydrogenase Complex. Years: 0-3 with treatment.
Click to expand...
https://helseforskning.etikkom.no/p...042989&p_parent_id=1049168&_ikbLanguageCode=n

Case-report from Exploratory measurements of capillary lactate in ME affected and their dependents or Monitoring of capillary blood lactate at rest, before and after cognitive and physiological stimuli suggests Metabolic Fingerprints of Lactate as novel potential and monitoring multi-parametric biomarker for ME (CDI-10).
Click to expand...
https://helseforskning.etikkom.no/p...042549&p_parent_id=1049164&_ikbLanguageCode=n


Wasn't able to find REK's reasoning/"decline letter" - perhaps it's not online yet?
 
Kalliope said:
Today came a rejection from Regional Committees for Medical and Health Research Ethics according to Victoria Bohne's Facebook page which means that no data from Bohne are approved for publication. So it seems whatever this is, it's back to square one.

To be frank I'm none the wiser of any of this..
Click to expand...
The assessment from Regional Committees for Medical and Health Research Ethics (REK Vest) has now been made publicly available, and is quite worrying to read.

From some of the conclusion - my translation:

REK Vest finds substantial and serious ethical problems and violations of the law which makes the committee unable to approve this project. The committee can't find validity in the argument about good faith nor that there are exceptional reasons to consider approval of the project. REK Vest does however find that due to the level of seriousness of the ethical problems with the project it wouldn't have been accepted even if the application had been sent in right time.
Because of the violations of the law and lack of routines and experiences of an institution with research responsibility, the Directorate of Health will get a copy of this decision.

Full text (in Norwegian)
https://helseforskning.etikkom.no/Content/918228/Møtedokument .pdf
 
Kalliope said:
The assessment from Regional Committees for Medical and Health Research Ethics (REK Vest) has now been made publicly available, and is quite worrying to read.

From some of the conclusion - my translation:

REK Vest finds substantial and serious ethical problems and violations of the law which makes the committee unable to approve this project. The committee can't find validity in the argument about good faith nor that there are exceptional reasons to consider approval of the project. REK Vest does however find that due to the level of seriousness of the ethical problems with the project it wouldn't have been accepted even if the application had been sent in right time.
Because of the violations of the law and lack of routines and experiences of an institution with research responsibility, the Directorate of Health will get a copy of this decision.

Full text (in Norwegian)
https://helseforskning.etikkom.no/Content/918228/Møtedokument .pdf
Click to expand...

Oh, that's damning. But not surprising, I'm sorry to say, REK's analysis matches my impression of the Bohen couple's process with these projects.

One of the things they point to, is the argument Bohen uses for good faith. Because of ME and severe cognitve issues during the project she forgot or wasn't aware of the need to apply.

She also wasn't aware that what they did was research, she claims. Despite having had the position of research counsler at a high school/university (not sure about right translation). Then the argument that they followed strict scientific rigor can't be true.


Never understood why they didn't instead spend their time developing a proper study and make sure to do it right. REK picked up on how patient selection was done, biases, undue pressure to sign patient permissions, double roles and more.

Really would have liked to see the results from the blood test compared to PEM, in a well done study. Hope they find a way to do this. But maybe Jarred Youngers good day-bad day study will give us some of those data?
 
You must log in or register to reply here.
Back
Top Bottom