Article about new potential treatment by Victoria Bohne, in Norwegian

[aimossy]

@mango is this the same Victoria, it seems it might be?
https://www.researchgate.net/profile/Victoria_Bohne

 

[mango]

@mango is this the same Victoria, it seems it might be?
https://www.researchgate.net/profile/Victoria_Bohne

Yes, I think so too.

 

[Biarritz13]

The evil is the years of suffering while waiting for a pharmaceutical company to perform its tests and decide whether or not it wants to spend the money to develop the drug. And if it does, then it needs to apply for approval of the drug in various countries in order to sell it. Could be ten years or more. And the company may decide it's not interested after all. Meanwhile, we are left wondering if there is something out there that could help.

I agree but still I don't see evil in her actions. We don't know the whole story yet...

 

[TiredSam]

The evil is the years of suffering while waiting for a pharmaceutical company to perform its tests and decide whether or not it wants to spend the money to develop the drug.

Compared to the 30 years of suffering caused by waiting for government research, or suffering harmful psych research, it's hard to know which is the lesser evil . I'll take a cure whichever channel it comes through.

 

[Riley]

If it's too good to be true...

 

[Snow Leopard]

If it's too good to be true...

We don't really know whether it is "too good", with so few details!

 

[barbc56]

The pharmaceutical company these people are negotiating with, will be asking a lot of questions and expect a detailed proposal before investing any money into a project.

Looks they aren't even close to be able to do this but then the article lacks so much information, other than ancedotal, you can’t really tell.

 

[paul80]

If someone knows the cure for M.E and decides not to tell anyone so they can try and make money out of it, i consider this immoral. I don't believe it anyway though. More likely it's someone trying to make money out of people with a fake cure.

 

[BurnA]

If someone knows the cure for M.E and decides not to tell anyone so they can try and make money out of it, i consider this immoral. I don't believe it anyway though. More likely it's someone trying to make money out of people with a fake cure.

I don't think there is anything immoral about wanting to make money.
Do you think pharmaceutical companies are researching diseases like Alzheimer's so they can cure people ? No, they want to make money, bacause that's why they exist. It just so happens they make money selling drugs, the way McDonalds sells hamburgers.

If they didn't get rewarded they wouldn't be in business. This is how the world works.

 

[paul80]

I know this is how the world works, that doesn't make it right. Putting profit before peoples health is immoral.

I think letting millions of people suffer so that you can get rich is very immoral.

 

[BurnA]

I know this is how the world works, that doesn't make it right. Putting profit before peoples health is immoral.

I think letting millions of people suffer so that you can get rich is very immoral.

I dont see it like that. If there is no incentive to research then nobody or very few will do it. It costs hundreds of millions to launch a new drug - if the world's governements aren't going to fund this then it boils down to businesses looking for profits.

I don't think they are 'letting people suffer', they are providing a service in return for payment. They aren't the cause of the suffering and if they did no research the suffering would last longer.

 

[paul80]

I dont see it like that. If there is no incentive to research then nobody or very few will do it.

I don't think most of the scientists who are trying to find a cure for us are doing it for money. They make a living which is fair enough but they are doing it for the prestige of achieving something and because it feels good to help people who are suffering.

I also don't think people's health should be controlled by private companies. Things that important need to be in the hands of the people.

 

[Snowdrop]

While there is nothing at all wrong with making money--a fair exchange of goods or goods and fiat currency there is something wrong with exploitation.
There have been a few cases in the paper in the past while of price gouging in the pharma industry. Price fixing, monopolies, cartels and such aren't just the territory of illegal mafias (or whatever).

The pharma industry does spend huge sums and should be recompensed. But they also have a certain (but imperfect and to my mind insufficient) transparency.

I have no idea and from my understanding here there is little to go on as to what is happening moving forward with 'the cure' perhaps it will get the benefit of trials etc. My problem at the moment is

1) calling it a cure even if that is in effect what it seems to have done for someone-- we are very sick and ME is a holding term until we know better the etiology of our (possibly various) illness(es). That is a bad start, a red flag if you will that there is hype--she has no idea how it will work in a large cohort.

2) how did she come to discover 'the cure'? Whatever treatment/cure lies ahead for us I think that at least some of the drugs are already in use that would work for treatment and that anything that is a cure would require the infrastructure of more than someone with a science degree working in their garage (unless she has a lab or used her employers)

The second point when you think about it just doesn't pass the sniff test. It is possible that some lone person toiling away at a complex problem does arrive at the solution but it's not the usual way of science--back in the day it happened a lot more often I think but the problems being solved were less complex and didn't require the vast sums now needed. And although I can't point to anything specific I feel like we've been here before. Others who have come and gone claiming the same with about as much transparency as this.

If it turns out that she really did happen to hit on the exact process that makes us all ill and has engineered a cure I don't mind if she makes money on it but I do hope it will be made available to all who need it through the usual channels. She of course has no obligation to ensure that.

I want a cure as much as anyone. Maybe I seem unduly pessimistic. Even when we're cautious it's too easy to get carried away by hope.

 

[Bob]

If they didn't get rewarded they wouldn't be in business. This is how the world works.

I think it would be more accurate to say that's how capitalism works. For good or bad.

 

[panckage]

I think I figured out the secret. I'm going to try it out and report back in a few months. I can't tell u exactly what it is but it has something to do with fish and buts

On the serious side though if this is real, it sounds like it something that can't be patented because if it was then there would be no problem on letting people know... Unless they are too poor to afford a patent and need the drug company to pay the $10,000 for the patent hmm...

 

[BurnA]

I think I figured out the secret. I'm going to try it out and report back in a few months. I can't tell u exactly what it is but it has something to do with fish and buts

On the serious side though if this is real, it sounds like it something that can't be patented because if it was then there would be no problem on letting people know... Unless they are too poor to afford a patent and need the drug company to pay the $10,000 for the patent hmm...

I would doubt a drug company would be interested without a patent of some sort.

 

[NL93]

This is a new article about it; http://www.kvinnheringen.no/me/medisin-og-helse/nyhende/skeptisk-til-me-medisin/f/5-27-25003

I can't read it (not a member)
Maybe someone in Norway can and give a short summary?

 

[barbc56]

It says a considerable subscription!

I hate when things like this are behind a paywall when it should be public information.

I would also like to read this or any other source.

Just looked again. It's a discussion group? I've never heard of paying for a forum but maybe I need to get out more!

I give up. It looks like a newspaper?

 

[Kalliope]

This is a new article about it; http://www.kvinnheringen.no/me/medisin-og-helse/nyhende/skeptisk-til-me-medisin/f/5-27-25003

I can't read it (not a member)
Maybe someone in Norway can and give a short summary?

It is about a specialist in general practice, Dr. Pernille Nyhlen, being sceptical about this research and how it is performed.

She has personal experience with the disease and is familiar with how serious it is.
(Edit: She knows someone privately with the disease, she does not have ME herself)
She thinks it is a pity to give false hope based on so little. She says that the researchers might very well be on to something, but it needs to be tested on a larger group of patients, and for now it is premature to claim this as sensational.

"Even though the researcher does not want to share what the treatment is, at least she should share the discovery. If she really has discovered something fundamental concerning the mechanism on ME, I sincerely hope she'll write about it and share it with the public. If she refuses, based on fear that someone will steal her idea, then she is an odd researcher."

The researchers do not want to comment.

The article says the researchers have tried to get a patent in Norway, but due to lack of funds they could not proceed and now have an intentional agreement with a German firm.

The article then continues with The Norwegian Research Council's project on ME-research. They recently asked the public what kind of research on ME is wanted. 60% answered they wanted research on causes of the disease.

For those who are not familiar with this, I'll add a google-translated article with news from the Research Council on this project (discussed in this thread):

Disease states with prolonged fatigue - what is the need of researching?

The Research Council has asked for proposals for research on diseases with prolonged fatigue from patients and relatives. We received 737 input to the deadline on Tuesday, 3 May 2016. Now the feedback is reviewed by a user panel.

Prolonged and pervasive fatigue, with or without pain, is a serious and relatively common disease state. The state has several designations, as CFS (Chronic Fatigue Syndrome) and ME (myalgic encephalopathy). It is characterized by the disease causes are complex and unclear, it is not found biological markers for the condition and that there is scientific disagreement about the symptom-based diagnostic criteria. As a result, it also lacks good treatment to patients.

Directorate of Health estimates that there are between 10,000 and 20,000 patients with CFS / ME of varying severity in Norway. Many experience major health problems for a long time and feel bad attended by health care. Research activity has been increasing in recent years, both in scope and approaches, but the need for more research and better knowledge of the CSF / ME is still large.

The method
There are several ways to identify knowledge needs. Health programs at the Research Council is now trying out an approach which in Norway has been named "The needs identified research". There should be research which provides knowledge that particularly sought by users of health services, and that is to be employed in the service of relatively short term.

From 10 April to 3 May 2016 we asked why the input to the research needs that may form the basis for new research projects.

We received a total of 737 input from patients, families, caregivers and organizations in both domestic and foreign.


The contents of input
Of the 737 input draws most forward needs and research questions in several areas. This is both desirable and understandable. The fact that the input is complex, however, has made it a bit more difficult to group them.


Research has nevertheless made a discretionary assessment of the kind of research that is requested in the input and rough sorted them into six categories: Cause, Diagnostic Criteria, Treatment, Prevention, Monitoring and Others.

Many of the proposals contains proposals in more than one category, usually in two, but also three and four categories. We've simplified by specifying the two categories which we believe emerges as importantly from submitter's side.

A count of the number of times the individual categories mentioned by number input is shown in the graph below.


The graph shows whenever knowledge needs related to one of the categories mentioned. As many suggestions mentioned need for several types of research will be the sum of the categories in this graph over 100 percent.
Research need most of respondents think it is important to find answers about "causes" of CFS / ME. In other words, research that may help to answer the question of why someone gets CSF / ME and what is underlying and precipitating causes of the disease. This category is mentioned in 59 per cent of all input.

The category mentioned Drogba is "treatment" by 40 percent. The group holds both curative treatment (treatment that makes you healthy) and symptom management.

The third major category is research on "follow-up" of, and arrangements for those who are sick (18 percent).

Research on "diagnostic criteria" is also mentioned many times (16 percent). Many of those not mentioned diagnostic issues during questions regarding research needs and research questions in the web form, mentioned this during one of the two questions which dealt with the benefits of research.

The two categories "prevention" and "other" (that which can not be placed in any of the other groups) occurred in getting input.

Explanation of categories
The input contains a number of quite detailed questions and hypotheses. And it is not possible to create a complete nationwide summary of everything we received. We reproduce therefore only the highlights of the respondents' comments.

causes
Many questions are related to the importance of infection in the disease (caused by bacteria, viruses or parasites), inflammatory role, immune system's response and function (autoantibodies), bacterial and viral flora in the intestines, intolerance to food, oxygen absorption / energy metabolism in muscle cells and disturbances in the hormone system.

Many are also concerned about CFS / ME has a hereditary component, and if the disease is related to personality traits or childhood factors.

In addition, the tab inputs that are concerned about CFS / ME is related to stress, or other somatic or mental illnesses. Vaccines, exposure to environmental toxins, molds and high frequency radiation is also mentioned by several.

diagnostic Criteria
Respondents are also concerned that the disease is not uniform and that there are probably talking about several subtypes of the disease or even various diseases.

Therefore it is very important to look for and find a biological marker (eg. Substance in the blood) of the disease. Many believe that it must distinguish between ME and other conditions which provide prolonged fatigue (CFS). It is in any case necessary that one always makes an account of the diagnostic criteria used when patients participate in a study, because this is a prerequisite for obtaining new knowledge about different patient groups (heterogeneity of the patient population).

Quite a few advocates that it is the sickest ME patients particularly need for researching now, and many believe that patient group "young people" must be given high priority.

Treatment
Many are concerned that research is much more about how the disease can be treated.

Among those wanting a standing portion more "biomedical research", and with the means, as we understand it, research related to treatment with drugs or other substances. It includes studies with Rituximab, Cyclophosphamide, Valecyte, Ampligen, Low-dose Naltrexone (LDN), nitroglycerin, saline infusion, vitamin B12 injections and gamma globulin / Gammanorm, to name the proposed many times.

It is also a great deal that means we have researched various techniques to cope with the disease, and of these, it is especially Lightning Process mentioned. It is important to find out more about who can and can not be helped by the different treatment measures. What characterizes the good stories and what characterizes the bad?

Follow-up
Several advocates that there should be a thorough mapping of the complex patient group and what kind of health care provision available. What characterizes them is actually being helped, that gets better or completely healthy, and what characterizes them as not being helped?

There is a need for more knowledge about the prevalence, course of disease, symptom burden and severity. In addition to knowledge about quality of life, in view of diagnoses and severity of disease. There is need for research on their situation and their need for support, and the patient encounters and experiences with health services and NAV.

Patients experience that many doctors and other healthcare professionals have insufficient knowledge, both about the disease and its consequences and what opportunities there are for assistance in health services. They also describe the frustration among health because they do not know how to help patients.

Some have experienced direct mistreatment and disrespect, many people find that they are not believed. But most patients are confident that healthcare professionals have genuine desire to provide good health care.

User Panel and the road ahead
Research has put together a wide user panel of patients, families, clinicians, researchers and health officials.

Together with the Research the panel's first task was to be based on the feedback and prepare a announcement researchers can apply.

It has become necessary to shift the original schedule of the announcements because of the large amount of input. Research is now planning to publish the first call text in September, with a deadline in November.

Researchers will initially submit a simplified application with a brief project. User Panel assesses and ranks the applications on the basis of how they answer the needs and expected benefits as this is requested in the announcement.

Various researchers who submitted a simplified application will then be invited to submit a full application.

These applications will be treated in the same way as ordinary applications to the Research Council's health programs. User Panel members may not submit or be involved in an application for a research project.

The composition of the operation panel


Role Organization / affiliation
Arild Angelsen Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
Trude Schei Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
January Nygård (deputy) Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
Nina Weering Small (deputy) Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
Oddny Sveen SELBAK Patient / Relatives M. E. Network in Norway, Bergen
Bård Johannessen Patient / Relatives M. E. Network in Norway, Bergen
Siren Deva (deputy) Patient / Relatives M. E. Network in Norway, Bergen
Eva Rullestad (deputy) Patient / Relatives M. E. Network in Norway, Bergen
Jorgen Jelstad Patient / Relatives Oslo
Trine Jakobsen Rydland Patient / Relatives Oslo
Cesilie Aasen Health Authority Department of Rehabilitation and rare conditions, the Health Directorate
Bodil Stokke (deputy) Health Authority Department of Rehabilitation and rare conditions, the Health Directorate
Bente MJØLSTAD Førsteamanusensis, physicians substitute NTNU, General Practice Research Unit
Ingrid Helland Specialist neurology National expertise service for CSF / ME, OUS
Sidsel Anne Toft Specialist Clinical Psychology Private Practice, Oslo
Randi Eikeland PhD, specialist neurology National expertise service for tick-borne diseases, Southern Hospital
Elling Ulvestad Department / Adjunct Professor Department of Microbiology, Health Bergen (Haukeland University Hospital)
Ingvild biscuits Program Director of CARE Professor, HiOA / Diakonhjemmet Hospitals
Bente Holm Mejdell Program Director in HELSEVEL CEO, Mental Health
Else Jorun Saga Program Director of HEALTH Patient ombudsmen, Telemark

User panel's first meeting will be on 20 June.

 

[IreneF]

In the US, new drugs need to go thru a testing process that takes years and involves rigorous trials. The FDA gives patent holders (drug companies) exclusive rights to sell the drug for a set number of years. There are no secret formulas.

So I think this is a crock.