Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

[richvank]

Thanks Rich, speaking of Nancy Klimas, may I ask how she feels about your hypothesis?

Hi, Tristen.

I have "lobbied" and emailed Nancy Klimas for several years. She is always cordial, and I consider her a friend and a major asset to the ME/CFS community. However, as of the Ottawa conference, I would say that she still has not "signed on" to the GD-MCB hypothesis. But hope springs eternal!

Best regards,

Rich

 

[Tia]

Why are you posting on a science-based discussion forum if you are clearly ignorant about science. Science doesn't care about what you "think", or what you would like to believe, it cares about evidence. The evidence is clear, it's not XMRV.

I would also like to urge those people framing this drug as some kind of miracle cure to administer themselves a strong dose of scientific scepticism and cautiousness, the worst thing that could happen is a repeat of the XMRV drama. At the moment these results tell us nothing concrete about the underlying pathology, absolutely nothing - they took very detailed measurements of immune parameters and yet no trend emerged, that should be a strong warning sign that we are barely scratching the surface.

The "evidence" also shows that the Norweigan scientists came to the same conclusions that Mikovitz said: That cancerdrugs could/would work and that XMRv messes with the immunesystem. They just said somethings wrong with the immunesystem since it's overactive. You should do your homework before critisising others posts. Everything Mikovitz said it was, proves to be so. The thing missing is that they can't find the virus.

Ps: Where in this thread does it say that one cannot write what one believes? Just curious because your critisism was so instant.

 

[richvank]

Hi, Sergio.

Thanks for the information. Your experience does not seem to mesh very well with the hypothesis I offered. Surprise!!

It would be interesting to know what your glutathione level has been doing. I still do think that the symptom severity will track with the glutathione status.
Puzzles still remain to be solved, so I guess I had better stay alive for a while. I would really like to find out the answers, as I know you would, too.

I appreciate your updates. Keep them coming!

Best regards,

Rich

 

[CBS]

Why are you posting on a science-based discussion forum if you are clearly ignorant about science. Science doesn't care about what you "think", or what you would like to believe, it cares about evidence. The evidence is clear, it's not XMRV.

I would also like to urge those people framing this drug as some kind of miracle cure to administer themselves a strong dose of scientific scepticism and cautiousness, the worst thing that could happen is a repeat of the XMRV drama. At the moment these results tell us nothing concrete about the underlying pathology, absolutely nothing - they took very detailed measurements of immune parameters and yet no trend emerged, that should be a strong warning sign that we are barely scratching the surface.

Vitalic,

I agree that the Rituximab is barely scratching the surface but claiming that "these results tell us nothing concrete about the underlying pathology, absolutely nothing" is missing the point, don't you think. Using your logic, the same could be said for quite a few medications used to treat other diseases (including the use of Rituximab to treat RA - is it T cells, B cells, an innate immune system issue, a virus (such as a herpes virus with reservoirs in B-cells) or something else entirely?). As for a repeat of the "XMRV drama" I get your concern but not sure that the lecture is going to help.

Could I also ask that when you quote someone, you use the feature that includes a link to the quoted text. Makes it a lot easier to assess the context of the original remarks. Nothing personal. A bit of a pet peeve. Thanks.

I think you're right. I also still think it's XMRV. BUT; it doesn't matter as long as the drug works and we get well...
<snip>

But..it's all relative, I guess...

 

[Vitalic]

Vitalic,

I agree that the Rituximab is barely scratching the surface but claiming that "these results tell us nothing concrete about the underlying pathology, absolutely nothing" is missing the point, don't you think. Using your logic, the same could be said for quite a few medications used to treat other diseases (including the use of Rituximab to treat RA - is it T cells, B cells, an innate immune system issue, a virus (such as a herpes virus with reservoirs in B-cells) or something else entirely?). As for a repeat of the "XMRV drama" I get your concern but not sure that the lecture is going to help.

Could I also ask that when you quote someone, you use the feature that includes a link to the quoted text. Makes it a lot easier to assess the context of the original remarks. Nothing personal. A bit of a pet peeve. Thanks.

I'm not sufficiently informed about RA to know if the comparison is valid in this context, but that would only concern the viability of the drug as a treatment, is it possible that the drug could be established as an ME intervention before a full understanding of the underlying pathology is gained? Yes, it's possible, but even if you take that view you still have to consider that it is a long way off happening and that the initial study will require extensive replication and validation before the word "cure" even enters the equation, and I suspect even at that stage it would be absurd. Check out the research forum for yourself, I count at least three topics that all specifically mention the word cure, if that isn't "getting ahead of yourself" I'm not sure what is.

All I'm urging is that people take a humble and cautious approach, I worry about the implications of over-hyping and constructing too-big-to-fail movements around specific individuals who can do no wrong even when they do, if you catch my drift. I can already see the psychologists sharpening their claws over this.

 

[CBS]

I'm not sufficiently informed about RA to know if the comparison is valid in this context, but that would only concern the viability of the drug as a treatment, is it possible that the drug could be established as an ME intervention before a full understanding of the underlying pathology is gained? Yes, it's possible, but even if you take that view you still have to consider that it is a long way off happening and that the initial study will require extensive replication and validation before the word "cure" even enters the equation, and I suspect even at that stage it would be absurd. Check out the research forum for yourself, I count at least three topics that all specifically mention the word cure, if that isn't "getting ahead of yourself" I'm not sure what is.

All I'm urging is that people take a humble and cautious approach, I worry about the implications of over-hyping and constructing too-big-to-fail movements around specific individuals who can do no wrong even when they do, if you catch my drift. I can already see the psychologists sharpening their claws over this.

"Cure" is not a word that I would use when referring to Rituximab and MS or RA (and certainly not for ME at this point in time). This study may provide a significant clue but a lot of work remains. As for the psychiatrists, I get the sense that this is all about losing face and market share. I suspect that as the erroneous illness belief hypothesis fails we'll see more desperate attempts from psychiatrists to save both. Patients that get ahead of the research set themselves up for a possible (even likely) fall but to me this is far more understandable given the reprehensible lack of support, research and empathy for ME patients in the wider medical community. As Dr. Montoya said last March, we're all long overdue an apology from the medical community.

 

[Insomniac]

This was fascinating redrachel. Both the latter, about the CFIDS position, but also the outbreaks of MS. Do you have any links to where I could get more info on this?

If you google faroe islands and multiple sclerosis you'll find it.
Also if you google - Dr Kurtzke, who is a doctor that studied the epidemics of M.S.

http://findarticles.com/p/articles/mi_m0850/is_n2_v15/ai_19802754/

Scientists do not really know what causes M.S. This is just one of the scientists arguing for it to have an infectious cause..

A more more definite example of an autoimmune desease caused by something infectious is Guillaine-Barr Syndrome
http://en.wikipedia.org/wiki/Guillain–Barré_syndrome


I read the CFIDS Forum's official position on this being an autoimmune desease in their last newletter. (Fall 2011) It's not online yet. Their "Back to Basics" column in the same issue said that they think it is autoimmune and also said that women get autoimmune desesase more than men which fits in with why so many more women are ill with this.
Now looking online I've found

"The president's message" on their homepage here:
http://www.ncf-net.org/presidents-message.htm

It says
"...CFS was proven to be an autoimmune disease by Dr. Yoshitsugi Hokama and Dr. Steven Schutzer looked at spinal fluid and proved it was different than Lyme Disease and there were distinct proteins found in CFS..."

 

[Vitalic]

"Cure" is not a word that I would use when referring to Rituximab and MS or RA (and certainly not for ME at this point in time). This study may provide a significant clue but a lot of work remains. As for the psychiatrists, I get the sense that this is all about losing face and market share. I suspect that as the erroneous illness belief hypothesis fails we'll see more desperate attempts from psychiatrists to save both. Patients that get ahead of the research set themselves up for a possible (even likely) fall but to me this is far more understandable given the reprehensible lack of support, research and empathy for ME patients in the wider medical community. As Dr. Montoya said last March, we're all long overdue an apology from the medical community.

Yes I fully agree with that. I think the explosion of new research is a kind of implicit apology though, a large segment of the research community has realised that this is a completely neglected area and potentially rich and fertile ground for new medical discoveries. What I doubt we'll ever see is an apology from Wessely and co. I suspect even if there was a proven physiological cause they would argue that there is a psychological component that is underpinning it, it's an unfalsifiable hypothesis because it's not based on objective evidence but an interpretation which can simply be adapted to explain anything.

 

[snowathlete]

What I doubt we'll ever see is an apology from Wessely and co. I suspect even if there was a proven physiological cause they would argue that there is a psychological component that is underpinning it, it's an unfalsifiable hypothesis because it's not based on objective evidence but an interpretation which can simply be adapted to explain anything.

Your right, but of course, it has to sound plausible to be taken seriously, and a position change like that would be such a huge backward step for them that no one would take it seriously. What is important is that we campaign for the appology and dont let it drop till we get it, even once we are eventually cured (by whatever means).

 

[Tia]

Vitalic: I agree with you that we should be careful in what we believe because dissapointment is a great fall. :/ So I'm kinda careful now about hoping too much, but I gotta say that the film of Elena in Norway looks pretty darn good..

On another note: I'm wondering how the norweigan scientists can say they were the first in the world that discovered this when Mikovitz said that this drug and otjer cancerdrugs could work..? Just wonderin'.

 

[Waverunner]

Vitalic: I agree with you that we should be careful in what we believe because dissapointment is a great fall. :/ So I'm kinda careful now about hoping too much, but I gotta say that the film of Elena in Norway looks pretty darn good..

The big difference between the XMRV study in Science and this study from Norway is that this one referred to a treatment option rather than the cause of ME. Therefore I'm very optimistic. While you can screw up laboratory results through contamination or make false claims about the cause of ME, it seems very unlikely to me that the results of the Norway study were based on a placebo effect.

 

[leela]

Why are you posting on a science-based discussion forum if you are clearly ignorant about science. Science doesn't care about what you "think", or what you would like to believe, it cares about evidence. The evidence is clear, it's not XMRV.

Vitalic,

This is not an appropriate way to address a fellow forum member. I'm sure you didn't mean to, but using the cloak of science you have deemed a person ignorant, and dismissed their thoughts and feelings as invalid. This goes against forum rules, as well as the guidelines for common courtesy.

You are welcome to encourage scientific thought, but please consider that others are also welcome to express their thoughts and feelings.
Courtesy and care should always be taken when expressing ourselves here, no matter which category of thought we fall into, or which side of any given fence we find ourselves on.

 

[Tia]

The big difference between the XMRV study in Science and this study from Norway is that this one referred to a treatment option rather than the cause of ME. Therefore I'm very optimistic. While you can screw up laboratory results through contamination or make false claims about the cause of ME, it seems very unlikely to me that the results of the Norway study were based on a placebo effect.

Hey! And thanks for replying!

True true about this study andthe other but Mikovitz said that cancerdrugs and drugs for HIV wouldwork, right? And Rituximab was on the way already then so how can the norweigan scientists claim its their discovery? Isn't it Mokivitz's? Or am I out sailin' here?

 

[Waverunner]

Hey! And thanks for replying!

True true about this study andthe other but Mikovitz said that cancerdrugs and drugs for HIV wouldwork, right? And Rituximab was on the way already then so how can the norweigan scientists claim its their discovery? Isn't it Mokivitz's? Or am I out sailin' here?

Hi Tia, Judy Mikovits unfortunately made a lot of claims but couldn't prove most of them. Mikovits also didn't conduct any study with Rituximab so I wouldn't say that it is her discovery. However I do think that things move forward and that we will have a real breakthrough regarding ME sooner than later. Unfortunately an upcoming recession in the US and Europe could slow things down but I still hope that the technological progress will help us defeating this illness soon.

 

[snowathlete]

Hey! And thanks for replying!

True true about this study andthe other but Mikovitz said that cancerdrugs and drugs for HIV wouldwork, right? And Rituximab was on the way already then so how can the norweigan scientists claim its their discovery? Isn't it Mokivitz's? Or am I out sailin' here?

I remember watching a documentary once about space and physics and stuff. Anyway it was dumbed down to my level so that i could just about grasp some of the science. But there were these guys who came up with this amazing idea about how a bit of the universe worked, and they spents ages looking for it with instruments. But someone else somewhere else using different instuments for something different stumbled upon the exact thing that the first guys were looking for. They communicated with each other about it, and it led to a greater understanding of the universe....guess who won the nobel prize for it?
It wasnt the guys who came up with the idea, or who had spent the longer looking for it, no, it was the guys who found it. That seems to be how science works.

 

[Tia]

Snow: Wow! It's just how I thought then. She came up with it and they take the credit for it. Damn. That's really low. :Retro mad: Buuut..I guess we really should be grateful if this really works now. Mikovitz (who I personally feel can be trusted, I just get a good feeling about her and don't think she ever lied.) did praise their study so it should work. Then again, does one dare to hope?..That is the question..my dear Watson.

 

[leela]

In my opinion we are in a time in history when we must relax our ideas of ownership of intellectual property, of patented organisms, etc.
Creative commons serve a far higher purpose and make ideas, their manifestation, and their continued improvement a matter of public benefit and cooperation. We are in early phases of transition, but it is time now, I believe, to let go of "credit", and for-profit motivations in science, medical research, education, health care, and human well-being in general. It is time for an open, participatory process of collaboration and compassionate action.

The collective good and the collective participation toward that end are what must be focused on now. The other path is leading to....well, the kind of crappy situation we here in ME world find ourselves in.

 

[Sing]

I agree with you, Leela. There was a terrific sociologist named Jane Jacobs (who also wrote very well by the way) who discovered that historically, the most creative cities, the places
and ways people came up with good new ideas, had exactly this sort of process of exchange through mixed communities and business.

 

[Mark]

Snow: Wow! It's just how I thought then. She came up with it and they take the credit for it. Damn. That's really low. :Retro mad: Buuut..I guess we really should be grateful if this really works now. Mikovitz (who I personally feel can be trusted, I just get a good feeling about her and don't think she ever lied.) did praise their study so it should work. Then again, does one dare to hope?..That is the question..my dear Watson.

Actually I don't think the suggestion that Dr Mikovits is responsible for the Rituximab connection has much weight behind it - I'm not aware of any evidence supporting that suggestion. From what I've gathered, I think the Norwegian study began before the publication of Lombardi et al in 2009, and the original spark for the Norwegian research was about 3 years ago, if I remember correctly. The Norwegian results have been quite widely known - though very much under wraps - for about 6 months now, and it's possible that the promising trial results were known to some researchers within the ME/CFS research community even before that.

There is an interesting connection with Dr Mikovits' research though: I may misremember some of the details, but Currer has posted on this forum a link to a paper from Mikovits et al, 2010, concerning XMRV expression in those same CD20 cells that Rituximab targets. Hopefully someone will add the details here. It does seem quite interesting if Dr Mikovits was investigating XMRV in CD20 specifically, though whether that is suggestive of a valid link, advance knowledge of the Norwegian progress, or common reasons to be interested in CD20, I'm afraid I don't know. I'm also curious to recall the specific details of what IrsiCaixa in Spain reported, again concerning XMRV expression in antibodies I think...again, perhaps someone has the details to hand?

 

[SilverbladeTE]

In my opinion we are in a time in history when we must relax our ideas of ownership of intellectual property, of patented organisms, etc.
Creative commons serve a far higher purpose and make ideas, their manifestation, and their continued improvement a matter of public benefit and cooperation. We are in early phases of transition, but it is time now, I believe, to let go of "credit", and for-profit motivations in science, medical research, education, health care, and human well-being in general. It is time for an open, participatory process of collaboration and compassionate action.

The collective good and the collective participation toward that end are what must be focused on now. The other path is leading to....well, the kind of crappy situation we here in ME world find ourselves in.

*nods!*
world's going to hell because they want absolute Oligarchy, a stanglehold, but that is both economic and social suicide
they don't care though, long as they can have their two mansions TODAY, who cares if they ruin their nations and eventually, destroy them?
see the Fall of Rome.