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Any news on Lipkin study?

SOC

Senior Member
Messages
7,849
"
Lipkin and his staff had a meeting on Friday to determine on more efficient process in communicating with the ME/CFS patient community.
Eco

That is generous and thoughtful of Dr Lipkin and his staff. Researchers do not, as a rule, provide information to the public before the publication of their research. As a patient, I appreciate any efforts they make to communicate with us prior to publication. They do not have to do this for us, as much as we may want it.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
There is, of course, another way to look at it. They are looking to improve their control of information. Although if that was the case, then perhaps Eco posting on the matter might be contrary to their wishes. Or is it?
 

Enid

Senior Member
Messages
3,309
Location
UK
Bravo Dr Lipkin and his team ! Thank you all for the updates and progress here.
 

Wally

Senior Member
Messages
1,167
I think it's time to put an end to the 'trash talking' against Dr. Lipkin. He is working tirelessly to find a cause and a cure on behalf of this community. Dr. Lipkin and his staff are in the process of setting up a system that will be more efficient and effective in communicating with patients within the ME/CFS community without disrupting or significantly adding to his work load. He has responsibilities and duties with other agencies. He has teaching responsibilities. He receives hundreds of virals from Scientists from around the world for analysis. His time is limited.

Lipkin has developed groundbreaking techniques that have helped a new generation of disease detectives sleuth out the infectious roots of mystery ills, chronic disease, and neuropsychiatric disorders like autism and OCD. Lipkin’s signature invention is a technology called Mass Tag PCR, which searches through large numbers of known viral and bacterial genomes to identify a culprit in a few hours. He often complements this test with others, including microbial detection microchips (GreeneChips) and gene sequencers that can complete an exhaustive search for known and unknown pathogens within a tissue sample in less than a day.

I have been in correspondence with Lipkin for some time now. There is a lot going on behind the scenes that the ME/CFS community is not even aware of which would make a good sequel to Osler's Web and perhaps one day the story may be revealed. I don't need recognition or feel important. In fact, I work behind the scenes to be more effective. You can ask Cort about this as he wanted me to take a more visible role which I decline. I don't need any recognition as I have received enough in my lifetime. If I find something of interest for the community, I post it. I have more to say about this later.

There are certain individuals in the ME/CFS community 'trash talking' and 'bad mouthing' Dr. Lipkin. That he is part of some grand conspiracy or shall I say conspiracies against the ME/CFS community. There is a group of people that believe Lipkin is unsupportive of Mikovits. WRONG! Did you know that Dr. Lipkin is the one that provided Mikovits with a lab to continue her work in the NIH study when no other lab would. Do you know it was Dr. Lipkin who made every effort to keep Mikovits from going to jail and mediated with Annette to help secure the release of Mikovits from jail...check your sources. He fully supports Mikovits and stands behind her as a competent researcher.

"It's disconcerting that some people disparage the efforts of dedicated, competent scientists. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS. "
Ian Lipkin

This has a very chilling affect on American researchers wanting to ever get involve or conduct research on behalf of the ME/CFS community if they are going to come under constant attack and belittlement because it happens to disagree with someone's pet theory on the cause of this illness. Do you know that every American retrovirolgist and virologist researcher believes that ME/CFS etiology is caused by a pathogen of unknown origin. That is more that can be said about researchers in other countries.

Eco

Ecoclimber,

I too have had an opportunity to talk with Dr. Lipkin, but only in person and not in relationship to the current status of any ME/CFS study that he is involved with. I have also read and/or listened to everything I could find on-line or in off-line discussions with people in the medical profession who have worked with him. I like many othernpeople are interested in understanding who he is and the possibilities of the advancement in research that he could bring to this illness. It is because of what I have learned about him that I believe he would want anything published about him to be accurate and accessible, especially if it is information that he believes should be released to the public. I also do have not ever said anything disparaging about with work, his integrity or his willingness to take on such an emotionally charged, politcally sensitive, but desparately needed area of research.

I don't know your personal situation regarding this illness, but I do know that this illness is brutal both on people who are afflicted with this illness and those who are close to them. I hope that the misinformation presented in some of the things you have posted in this thread can be quickly corrected and we can move on from here try to keep information about this illness presented in as an accurate and thoughtful way as possible.

Wally
 

akrasia

Senior Member
Messages
215
Ecoclimber wrote:

I have been in correspondence with Lipkin for some time now. There is a lot going on behind the scenes that the ME/CFS community is not even aware of which would make a good sequel to Osler's Web and perhaps one day the story may be revealed. I don't need recognition or feel important. In fact, I work behind the scenes to be more effective. You can ask Cort about this as he wanted me to take a more visible role which I decline. I don't need any recognition as I have received enough in my lifetime. If I find something of interest for the community, I post it. I have more to say about this later.

There are certain individuals in the ME/CFS community 'trash talking' and 'bad mouthing' Dr. Lipkin. That he is part of some grand conspiracy or shall I say conspiracies against the ME/CFS community.

--—---------------------------------------------------------------------------------------------------------------------------------------
First, I'd like to support Wally, who was only seeking clarity and disseminating information to the greater m.e world. It's not necessary to be a member of PR to view these boards and the information you claim to possess does not "belong" to you. It is too important for that.

If as you say, there is a great deal of things going on behind the scenes, enough for a sequel to Osler's Web, then speculation about dark motives and institutional machinations, whether accurate or not, doesn't seem inappropriate to me. Your words betray a conflicted view. What this community desperately needs and deserves is as much transparency as possible. I have a feeling Lipkin understands this.

This story will be revealed. There are many of us who are determined to demand accountability. The idea that you and only a handful of others can retain control of this information is both odious and absurd.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Eco can either post or not post information. I have always considered "cutting and pasting" someone else's post as not showing much respect. If I wanted to all I need to do is ask for permission. I appreciate very much what Eco does for this form and would certainly hope he continues. Cutting and pasting may be against forum rules, but it shouldn't need to be. If you want please ask the author and if they say no then respect their decision. These forums run so much better when there is a lot of respect shown between members and guest. I don't think Wally meant any harm, but a private message asking permission would have been the respectable thing to do.
 

Wally

Senior Member
Messages
1,167
Eco can either post or not post information. I have always considered "cutting and pasting" someone else's post as not showing much respect. If I wanted to all I need to do is ask for permission. I appreciate very much what Eco does for this form and would certainly hope he continues. Cutting and pasting may be against forum rules, but it shouldn't need to be. If you want please ask the author and if they say no then respect their decision. These forums run so much better when there is a lot of respect shown between members and guest. I don't think Wally meant any harm, but a private message asking permission would have been the respectable thing to do.

August59,

I am trying very hard to have some semblance of patience and decorum with what I believe has been posted inaccurately about me. Please, before you or anyone else continues to repeat Ecoclimber's allegation about me. Do your own investigation about this matter and I assure you that you will find no factual basis to support Ecoclimber's accusations/implications against me. Please note, this matter is currently under Forum Moderation review.

Wally

P.S. Thank you to all the Forum members (who may not even know me), but who have reached out to express their concern and support that I not be publicly flogged without a fair trial. :)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I just want to point that out that my experience interacting with Wally on this forum and elsewhere has been nothing but pleasant. He has always been polite, considerate, helpful and of good motivation. I really can't imagine that Wally has intentionally caused any problems, although I haven't been following events on the other forum. We all copy and paste information without asking permission, at times, just to share information. Pretty much all of us. So I just wanted to put in a good word for Wally, because in my experience he's been nothing but polite and courteous.

It can be quite distressing to come under attack on the forum, so I don't think any of us need to add to what Eco has said.
 
Messages
5,238
Location
Sofa, UK
Members retain copyright over anything they post on this forum, and also grant an unlimited and irrevocable licence to Phoenix Rising over that content. For more clarification on that, see the Terms and Conditions in Forum Rules Explained.

This means that content that members have posted here cannot be taken by somebody else and reproduced elsewhere for commercial gain. However, as I understand it (and I am not a lawyer), where the content has not been made available commercially by the poster, there would be nothing illegal in taking that content and quoting it elsewhere with comment - indeed, even if it were information that had been commercially exploited, it would be quite legal and indeed normal to do this provided that it is only an extract of any article that is quoted, and it is attributed. That is exactly what we all do with quotes from articles in newspapers etc: that is copyright information but extracts from it can be legally reproduced elsewhere.

In the case of reproducing comments from a private conversation (email or letter, for example) it would be generally considered really quite rude to reproduce that content anywhere (even privately) without asking the permission of the person who sent the private correspondence. However I think (but I am not sure) that this would not be illegal (there may be some circumstances where it would be).

But as for quoting posts from one forum on another forum, maybe I'm missing something, but I don't really see anything unusual or untoward in that. One could link to the original post - this is a public thread on the internet, after all - and what would be wrong with that? If one quotes that "Ecoclimber said this on forum x", well, it was said on a public forum and I wouldn't have expected that to be a particular problem. It would be a different matter if it was an article or blog post that was reproduced in full somewhere else; in a case like that it would be morally and perhaps even legally necessary to ask for permission. But I wouldn't expect that quoting somebody else's public forum posts here somewhere else, without permission, should be a major problem. I doubt that Wally saw it as a rude thing to do, and I wouldn't see it that way either, really.

Of course, if one were also bad-mouthing the person somewhere else, and criticising the comments there, while engaging in a quite different way on the original forum, then that would be quite rude. If Eco's complaint is about the actual comments that Wally made about him or his posts somewhere else, then that's different. But then, in that case, Eco might quote here what Wally said on the other forum, in the same way, and I would personally think that to be quite reasonable to do also. Though of course, if the comments elsewhere breached this forum's rules, that would be a problem.

So perhaps I'm missing something here, and Eco or someone who agrees with him on this issue can tell me why it's rude to quote elsewhere what somebody writes on this public forum. I don't get it - and I am sure I've been quoted elsewhere by now, and that doesn't bother me, I expect it, I know I'm posting publicly. The only time it did hurt and felt rude and a betrayal was when it was a private communication that was posted publicly, and that's where I personally think the line is on this question. Quotes from what we post here publicly can be posted elsewhere, both legally and morally, within the confines of copyright law; that's how I see it, am I missing something here?
 
Messages
5,238
Location
Sofa, UK
And I suppose I should add that I realise that Wally has said that he did not actually cut and paste the comments elsewhere as Eco has claimed. I don't see anything wrong with it even if Wally had done so, and so I don't understand Eco's complaint against Wally in either case. It's correct that the moderation team are looking into this, and it does look to me like those comments could be construed as a personal attack aimed at Wally, so please could Eco clarify the reason for those comments, with evidence, either publicly on this thread or by starting a private conversation with me about this. In particular, Eco, when you say: "When I provide information that may be of interest to the ME/CFS community, I don't expect it to be cut and paste or banter about on other forums" I don't understand why that is: when I post here, I assume the opposite: anything I say might be quoted elsewhere, just as it might be with anything else I said in public. What's the confusion here? This is a public forum.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
August59,

I am trying very hard to have some semblance of patience and decorum with what I believe has been posted inaccurately about me. Please, before you or anyone else continues to repeat Ecoclimber's allegation about me. Do your own investigation about this matter and I assure you that you will find no factual basis to support Ecoclimber's accusations/implications against me. Please note, this matter is currently under Forum Moderation review.

Wally

P.S. Thank you to all the Forum members (who may not even know me), but who have reached out to express their concern and support that I not be publicly flogged without a fair trial. :)

Wally, I promise my post was not not personal, but about posting in general and it is obvious you are a nice guy by the support from members whose opinion I hold in high regard. I apologize in any way if you were offended and it was not my intention. Just curious as to where you were from though? That's one thing I don't like about the new setup so far is most of the people had their location show up under their avatar, but it doesn't do it anymore. I suppose we could add it to the comments.
 
Messages
5,238
Location
Sofa, UK
If you click on somebody's avatar a card pops up with their details. There is already a thread in Tech Support about that.
 
Messages
5,238
Location
Sofa, UK

LisaGoddard

Senior Member
Messages
284
"Eco,
Please do tell us what you can of how far the work has gone with Lipkin ie are they already testing samples for viruses? Any hopeful preliminary results? Any information would be great. I emailed the Chronic Fatigue Initiative twice but realised after that that they probably get lots of email so it made no sense to keep asking them.
Lisa"

Lipkin and his staff had a meeting on Friday to determine on more efficient process in communicating with the ME/CFS patient community.

Eco


Hi Eco, Do let us know if you hear anything.
Thanks, Lisa
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Thanks everyone who has shared information with us, I for one, appreciate it very much.
I have always been very impressed with Dr Lipkin, not just his work, but the way he conducts himself overall. It will be great if we could get some kind of regular official update or something, i hope for that, but if we got anything even close to that we would get more than anyone else in a similar position gets. So, if we dont get that, i can live with that and just wait patiently.

Isnt it great that there is hope with Lipkin and others looking at our illness and trying to figure it out. When i have a bad day i think to myself, soon, sometime soon, one of them will find something that will matter and lead to a fix. I dont know about anyone else, but ive had a lot of bad days recently, so thank God for that!
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I think Dr. Montoya's study was looking at a variety of pathogens (this may be the wrong word for me to use). I'm sure some are viral, but it just seemed as if there were other pathogens in the list that were more of what I consider bacterial. There were a few on the forums that were part of the study and I think they knew what they would be tested for, but they were not going to get the results of their personal test. Maybe one of them will pick up on the conversation and give some input.