Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

[deleder2k]

@Kina

I don't see why. I have tried discussing with that individual before. I do not want to "label" anyone, but to put it short; I don't think anyone will get anywhere with her.

@Bob I totally agree.

@Jonathan Edwards thank you again for an outstanding job! We really appreciate it. The future is bright thanks to you and others in the U.K and Norway. dr. Øystein Fluge said this week that the open phase 2 study has been sent in to PLOS ONE. The study is encouraging for all of us, as far as I know.

 

[Snow Leopard]

I was wondering that also. I am in the rodent allergy club too. But I would think that the reaction would have reduced over the last year and a half if it was rodent allergy?

I'd like to clarify that allergy to the chimeric part of a monoclonal antibody, is completely different to a 'rodent allergy' (which is far less specific...).

 

[Kati]

Would anybody care to address this latest bit of ... .

Thanks.

i think essentially, respectful tone is everything and there is no need for screaming and insulting.
Therefore Phoenix Rising forum users should not have to be exposed to this very inflammatory post.

Thanks for asking our opinion @Kina and for keeping this forum safe and pleasant for all.

 

[Undisclosed]

i think essentially, respectful tone is everything and there is no need for screaming and insulting.
Therefore Phoenix Rising forum users should not have to be exposed to this very inflammatory post.

Thanks for asking our opinion @Kina and for keeping this forum safe and pleasant for all.

The problem is that there are people out their that believe this person because nobody ever questions them. I won't say another word, I am done here.

 

[Kati]

The problem is that there are people out their that believe this person because nobody ever questions them. I won't say another word, I am done here.

You are describing the Jihads

 

[Gijs]

I am very happy we have a professor like Edwards who is a specialist on immuneproblems and Rituximab on this forum. I don't understand why some patiënts even listen to Mikovits. She made a mess. Let her proof that CFS is caused by a retrovirus. I believe she is a nice and good person but she must stop spreading inaccurate information. In science it is all about data!

 

[Bob]

I really like Judy Mikovits, and always have done. I think she has a good heart, and I think she has a very creative mind, which is always working furiously, trying to connect the dots. But I think, for the sake of her own public relations, she perhaps needs to support her hypotheses with rigorous and replicated research before recommending tests or heavy-duty treatments.

 

[Countrygirl]

But I think, for the sake of her own public relations, she perhaps needs to support her hypotheses with rigorous and replicated research before recommending tests or heavy-duty treatments.

Dr Mikovits has literally given her all to do just as you suggest, but how can she do that without a lab? It is the same old pattern; whenever a scientist promotes our cause history proves they are hounded out of the field.

 

[Bob]

Dr Mikovits has literally given her all to do just as you suggest, but how can she do that without a lab? It is the same old pattern; whenever a scientist promotes our cause history proves they are hounded out of the field.

I agree, and I think she's been treated dreadfully. But I don't think it's good for her own public relations to be recommending untested partial doses of heavy-duty treatments to vulnerable patients. Or even normal doses of untested heavy-duty treatments. You remember what happened when the WPI recommended unvalidated blood tests - The backlash continues today. It's simply bad public relations. She has the option of not recommending anything. If she were to give presentations purely in terms of presenting her own untested hypotheses, then I don't think anyone could legitimately criticise her for that. But she is recommending (untested and potentially dangerous) treatments off the back of her various untested hypotheses. She is going to harm her public image if she does this. I admire her enthusiasm and dedication but I think a slightly modified public message might be beneficial.

 

[Countrygirl]

She made a mess.

I can understand that the complex and conflicting information that was circulating a few years ago would cause confusion, but did the book not explain the situation to you? The mess you refer to was not of her making.

 

[jstefl]

I listened to Judy Mikovits because I was interested in what she had to say. I am interested in any and all ideas that might help me. As far as I know, she never claimed that XMRV "caused" CFS/ME, she just said that there was a relationship.

Judy Mikovits was treated very similar to the way Dr. Elaine DeFreitas was many years before. They both have photographs of viruses breaking out of a cell. This is not conclusive proof of anything, but in my opinion, it is worthy of additional investigation.

It is possible that all cases of CFS/ME are autoimmune and can be cured by Rituximab, but I doubt that very much. We need to look at all possibilities. I believe that we are talking about an illness with many possible causes.

I find it really sad that there are so many people out there with closed minds. How many people continued to suffer from ulcers long after Drs. Marshall and Warren proved that ulcers could be treated with antibiotics? Why should such a simple idea take so long to get accepted? This should have been accepted immediately by the medical professionals, yet 20 years later there were skeptics.

Science may be all about data, but there are many out there that won't accept the data. As you are well aware, there are many out there that don't believe we are ill. Why is it a big deal that Dr. Lipkin says that we have a real illness? Was that really necessary? Are we just a bunch of liars faking symptoms and seeking attention?

John

 

[NK17]

You may well be right.

While we're talking and "speculating" we're also awaiting the publication of the new Hornig/Lipkin et al. paper on spinal fluid of ME/Cfs patients, which should be out soon.

 

[beaker]

While we're talking and "speculating" we're also awaiting the publication of the new Hornig/Lipkin et al. paper on spinal fluid of ME/Cfs patients, which should be out soon.

Have there been any hints as to how soon ?

 

[NK17]

Have there been any hints as to how soon ?

I'm afraid I don't know how soon.

 

[Daisymay]

I thought people might be interested in seeing again this review of immunological abnormalities in ME from the IiME Journal 2012, starts p29:

http://www.investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

 

[thegodofpleasure]

Whilst the modern-day fashion is to be risk averse and silent, I really admire someone like Judy Mikovits who is prepared to come out into the open and say what she thinks.
There are precious few people who are actually doing anything really practical to help us at the moment, so why rubbish her ideas before checking them out properly and knowing precisely what she is saying.

Whilst she may be a lone voice in saying what she is saying, it doesn't mean that she is wrong. It's maybe that she is just a bit bolder and braver than the rest.

Drs Beiger and Kramer are both Immunologists and would not associate themselves with this video if they didn't think that Dr Mikovits' ideas had some merit.
It is completely unfair and inaccurate to say that she doesn't understand immunology @Jonathan Edwards
Her experience as a Cancer researcher, retroviral researcher and latterly M.E/cfs researcher, should not be discounted.

If you have questions about the details of what she says in the video, why not ask her directly to clarify them.
At the moment, we don't actually know what she means by a low dose, so let's find out what she suggests.

And whilst we're on, let's get precise clarification about the screening tests that she would conduct before administering Rituximab, Her reasons for wanting to do that seem perfectly sound to me.

Furthermore, the issues which she has highlighted have been proved to be very real and should surely be of concern to anyone who is organising or considering taking part in a trial using Rituximab. At least she is trying to start a discussion about it - and that is all that she could rightly be accused of doing.

 

[Jonathan Edwards]

Whilst the modern-day fashion is to be risk averse and silent, I really admire someone like Judy Mikovits who is prepared to come out into the open and say what she thinks.
There are precious few people who are actually doing anything really practical to help us at the moment, so why rubbish her ideas before checking them out properly and knowing precisely what she is saying.

Whilst she may be a lone voice in saying what she is saying, it doesn't mean that she is wrong. It's maybe that she is just a bit bolder and braver than the rest.

Drs Beiger and Kramer are both Immunologists and would not associate themselves with this video if they didn't think that Dr Mikovits' ideas had some merit.
It is completely unfair and inaccurate to say that she doesn't understand immunology @Jonathan Edwards
Her experience as a Cancer researcher, retroviral researcher and latterly M.E/cfs researcher, should not be discounted.

If you have questions about the details of what she says in the video, why not ask her directly to clarify them.
At the moment, we don't actually know what she means by a low dose, so let's find out what she suggests.

And whilst we're on, let's get precise clarification about the screening tests that she would conduct before administering Rituximab, Her reasons for wanting to do that seem perfectly sound to me.

Furthermore, the issues which she has highlighted have been proved to be very real and should surely be of concern to anyone who is organising or considering taking part in a trial using Rituximab. At least she is trying to start a discussion about it - and that is all that she could rightly be accused of doing.

I hesitate to say more, but just keeping stumm may not help either.

I totally agree with those who testify to Dr Mikovits's commitment to ME. She wants to help. Before I saw this video I assumed that her problem was simply that of so many scientists - too much loyalty to a particular theory. But the video indicates another problem. She appears to have no insight into the limitations of her understanding. Moreover, she wants to be able to advise people and cannot stop herself doing that despite the fact that she does not have the expertise to do so. Scientists do not normally criticise each other in public in the way I am doing now, and I feel very uncomfortable about it. However, PR is all about being honest and, yes, trying to help get research into ME off the ground the best way possible. The only way out of the misery of having the door shut in the face of PWME is to understand the human motives at all levels and to be frank about them.

The problem is that Dr Mikovits is talking nonsense. If people find that hard to swallow then I would ask everyone on PR to try to find an immunologist with an expertise in B cell dynamics, (and no preconceptions about ME research to confuse things), who is prepared to look at this video and say other than that. If Dr Mikovits looks at the video she will realise she was talking nonsense. And not because of slips of the tongue or nerves. She is making things up that do not make any immunological sense. I understand that people may think this is extraordinary in a scientist but the reality is that it is quite common - particularly in the field of autoimmunity. Wherever you have a science where it is quite difficult to disprove anything you get people wanting to explain everything to everyone else despite the fact that they do not understand that they are contradicting themselves.

I feel sorry for all concerned, but my feeling is that the ME community needs to move on to real science. The landscape in view, after chucking almost everything so far in the bin, may look arid and unpromising but it always looks like that at first. And there is a mass of data already gathered that does help - it just needs to be considered in a wider perspective.

If people want I can go through sentence by sentence to indicate all the contradictions in what Dr Mikovits was saying but I think apart from anything that would be unfair to her. She shouldn't have got her B cell maturation groups back to front. She shouldn't have drawn conclusions from circulating cell maturation to apply to the function of cells in marrow and spleen. She has no reason to suggest that screening patients for immortalisable cell lines will indicate suitability for treatment, and so on and so on, but I would only go through it all if people really ask for that.

There is no point in accusing people of bad faith here. I am not saying things because I want to do someone down and have not made comments without good reason. If people want to query my account, find a B cell immunologist and show them the video. If they say it makes sense, I will think again.

 

[Sasha]

Have there been any hints as to how soon ?

Cort said on Health Rising that he thought it would be a couple of weeks (and I think he said that a week ago).

 

[Undisclosed]

I hesitate to say more, but just keeping stumm may not help either.

I totally agree with those who testify to Dr Mikovits's commitment to ME. She wants to help. Before I saw this video I assumed that her problem was simply that of so many scientists - too much loyalty to a particular theory. But the video indicates another problem. She appears to have no insight into the limitations of her understanding. Moreover, she wants to be able to advise people and cannot stop herself doing that despite the fact that she does not have the expertise to do so. Scientists do not normally criticise each other in public in the way I am doing now, and I feel very uncomfortable about it. However, PR is all about being honest and, yes, trying to help get research into ME off the ground the best way possible. The only way out of the misery of having the door shut in the face of PWME is to understand the human motives at all levels and to be frank about them.

The problem is that Dr Mikovits is talking nonsense. If people find that hard to swallow then I would ask everyone on PR to try to find an immunologist with an expertise in B cell dynamics, (and no preconceptions about ME research to confuse things), who is prepared to look at this video and say other than that. If Dr Mikovits looks at the video she will realise she was talking nonsense. And not because of slips of the tongue or nerves. She is making things up that do not make any immunological sense. I understand that people may think this is extraordinary in a scientist but the reality is that it is quite common - particularly in the field of autoimmunity. Wherever you have a science where it is quite difficult to disprove anything you get people wanting to explain everything to everyone else despite the fact that they do not understand that they are contradicting themselves.

I feel sorry for all concerned, but my feeling is that the ME community needs to move on to real science. The landscape in view, after chucking almost everything so far in the bin, may look arid and unpromising but it always looks like that at first. And there is a mass of data already gathered that does help - it just needs to be considered in a wider perspective.

If people want I can go through sentence by sentence to indicate all the contradictions in what Dr Mikovits was saying but I think apart from anything that would be unfair to her. She shouldn't have got her B cell maturation groups back to front. She shouldn't have drawn conclusions from circulating cell maturation to apply to the function of cells in marrow and spleen. She has no reason to suggest that screening patients for immortalisable cell lines will indicate suitability for treatment, and so on and so on, but I would only go through it all if people really ask for that.

There is no point in accusing people of bad faith here. I am not saying things because I want to do someone down and have not made comments without good reason. If people want to query my account, find a B cell immunologist and show them the video. If they say it makes sense, I will think again.

I took a course in immunology in Uni years ago and watching the video before you posted here @Jonathan Edwards, I did wonder if I was confused or if she was. I think it might be helpful to point out in very simple terms some of her mistakes. I know Judy Mikovits is a very nice person who means well but really we need to be following the science, not the person. I wish she would join the forums because if she has mis-stated something, she could clarify. If anybody knows Judy Mikovits, please invite her to join. It would be excellent to have a two-way conversation.

 

[Kati]

I hesitate to say more, but just keeping stumm may not help either.

I totally agree with those who testify to Dr Mikovits's commitment to ME. She wants to help. Before I saw this video I assumed that her problem was simply that of so many scientists - too much loyalty to a particular theory. But the video indicates another problem. She appears to have no insight into the limitations of her understanding. Moreover, she wants to be able to advise people and cannot stop herself doing that despite the fact that she does not have the expertise to do so. Scientists do not normally criticise each other in public in the way I am doing now, and I feel very uncomfortable about it. However, PR is all about being honest and, yes, trying to help get research into ME off the ground the best way possible. The only way out of the misery of having the door shut in the face of PWME is to understand the human motives at all levels and to be frank about them.

The problem is that Dr Mikovits is talking nonsense. If people find that hard to swallow then I would ask everyone on PR to try to find an immunologist with an expertise in B cell dynamics, (and no preconceptions about ME research to confuse things), who is prepared to look at this video and say other than that. If Dr Mikovits looks at the video she will realise she was talking nonsense. And not because of slips of the tongue or nerves. She is making things up that do not make any immunological sense. I understand that people may think this is extraordinary in a scientist but the reality is that it is quite common - particularly in the field of autoimmunity. Wherever you have a science where it is quite difficult to disprove anything you get people wanting to explain everything to everyone else despite the fact that they do not understand that they are contradicting themselves.

I feel sorry for all concerned, but my feeling is that the ME community needs to move on to real science. The landscape in view, after chucking almost everything so far in the bin, may look arid and unpromising but it always looks like that at first. And there is a mass of data already gathered that does help - it just needs to be considered in a wider perspective.

If people want I can go through sentence by sentence to indicate all the contradictions in what Dr Mikovits was saying but I think apart from anything that would be unfair to her. She shouldn't have got her B cell maturation groups back to front. She shouldn't have drawn conclusions from circulating cell maturation to apply to the function of cells in marrow and spleen. She has no reason to suggest that screening patients for immortalisable cell lines will indicate suitability for treatment, and so on and so on, but I would only go through it all if people really ask for that.

There is no point in accusing people of bad faith here. I am not saying things because I want to do someone down and have not made comments without good reason. If people want to query my account, find a B cell immunologist and show them the video. If they say it makes sense, I will think again.

Thank you @Jonathan Edwards it's a very interesting dynamic because patients have grown attached to Dr Mikovits because she cared and interacted with a group of patients (she probably still does). (And some will actually bad mouth me because I am saying this) The same patients fund her travels to conferences and meetings.

The very same people are considering boycotting Invest in ME because something bad has been said about JM. That's a very bad state of affair.

My opinion is, if you are a scientist, publish. This is the scientist's language in communicating the science.
We are in great need of good (published) science.