Innate Immune Changes in the Peripheral Blood

[RustyJ]

Mikovits is well acquinted with the PR forum and many of her supporters on here.

And detractors .

I don't see the value in continuing to snipe at the messenger (the poster), which is after all a form of personal attack. The fact that Mikovits addressed specific points (albeit generally) suggests she at least read some of the thread.

I welcome Mikovits' further contributions to the discussion, whether they happen on the forum or elsewhere.

 

[Kati]

And detractors .

I don't see the value in continuing to snipe at the messenger (the poster), which is after all a form of personal attack. The fact that Mikovitz addressed specific points suggests she at least read some of the thread.

I welcome Mikovitz's further contributions to the discussion, whether they happen on the forum or elsewhere.

Her name is Judy Mikovits.

 

[Ernie]

Retraction for Schlaberg et al., XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors

1. Robert Schlaberga,1 Daniel J. Choeb, Kristy R. Browna, Harshwardhan M. Thakerb
   
   • Ila R. Singha,

The authors wish to note, “Due to work performed in other labs, we now know that some conclusions from our paper on xenotropic murine leukemia virus-related virus (XMRV) cannot be true. However, other findings that we reported in that paper still remain valid.

“The immunohistochemical staining with anti-XMRV antiserum that we reported in our PNAS publication was most likely due to cross-reactivity of our antiserum with a protein present almost exclusively in malignant prostatic epithelial cells. We are in the process of identifying this cross-reactive protein. The race is on the rediscover the variants but everyone knows Mikovit/Ruscetti found it first!!!!!

http://www.pnas.org/content/111/33/12270.full

 

[RustyJ]

Her name is Judy Mikovits.

Sorry. I'll blame me.

 

[Ernie]

Identification of Replication Competent Murine Gammaretroviruses in Commonly Used Prostate Cancer Cell Lines
Using a combination of both immunohistochemistry with broadly-reactive murine leukemia virus (MLV) anti-sera and PCR, we determined if additional prostate cancer or other cell lines contain XMRV or MLV-related viruses. Our study included a total of 72 cell lines, which included 58 of the 60 human cancer cell lines used in anticancer drug screens and maintained at the NCI-Frederick (NCI-60). We have identified gammaretroviruses in two additional prostate cancer cell lines: LAPC4 and VCaP, and show that these viruses are replication competent. Viral genome sequencing identified the virus in LAPC4 and VCaP as nearly identical to another known xenotropic MLV, Bxv-1. We also identified a gammaretrovirus in the non-small-cell lung carcinoma cell line EKVX. Prostate cancer cell lines appear to have a propensity for infection with murine gammaretroviruses, and we propose that this may be in part due to cell line establishment by xenograft passage in immunocompromised mice. It is unclear if infection with these viruses is necessary for cell line establishment, or what confounding role they may play in experiments performed with these commonly used lines. Importantly, our results suggest a need for regular screening of cancer cell lines for retroviral “contamination”, much like routine mycoplasma testing. http://www.plosone.org/article/info...(PLoS+ONE+Alerts:+Virology)#pone-0020874-t001

 

[thegodofpleasure]

Huh? Did I miss anything?
Patients are patients. There are no conflicts of interests or bias in the patient community excepts that we all want to get better.

Obviously Dr Mikovits is engaging with patients and is being fed information which turns groups of patients against another one. That's kind of sad.

There is no doubt (in my mind at least) that there are people who post on here who are not patients (or patient advocates) and who have ulterior motives for doing so. Dr Mikovits' remark was directed at those people.

I can assure you that there is no intention to "turn groups of patients against one another".
However, there is every intention to ensure that ignorance, bias and prejudice aren't allowed to shut down discussion of a potentially very significant line of scientific enquiry.

There are complex legal reasons why Dr Mikovits cannot post on here herself, but I'm led to believe that she will soon be free of that restriction.

 

[RustyJ]

This assay was used is at least five cohorts and more than 800 patients and controls: in the original XMRV paper published in Science, in prostate cancer patients, in patients from the BEll, Cheney, Gordon, Montoya, Kamaroff, Lo/Alter, Hemispherx, and Silverman/Klein prostate studies. The assay was validated in the Lipkin multi-center study to detect a reactivity which was clearly not XMRV Silverman/DeRisi as XMRV Silverman/Derisi was clearly shown not to have a natural history of infection in man (or any animal so far). We discussed in detail what that reactivity might be and suggested further study

Dr Goetz thesis project was to characterize the immune responses in all of the studies described.

Quoted from Mikovits' response.

Aside from the retroviral side trails, I still don't understand why the findings of this work are not significant and why they don't merit further study. Was it 30%? of all cfs defined patients had this reactivity and correlating immune signature?

And they certainly seem more significant than anything else that came out of the CFI.

It does sound like Lipkin knew about this correlation, but still chose to shift over to microbiome work, on the basis of what? Was this the issue he kept skirting around when questioned over the CFI 'retroviral' traces? It seems there was more going on in the background than we knew. It may also explain why Mikovits agreed to take part in the CFI study in the first place.

 

[heapsreal]

Can someone explain, spleen focus-forming virus (SFFV)?

 

[RustyJ]

Can someone explain, spleen focus-forming virus (SFFV)?

From the cross-reactivity angle? This might help a bit.

Lombardi et al. first reported on specific immune responses to XMRV in CFS patients [2]. They used FACS to measure the antibody against XMRV by mixing patient plasma with a mouse B cell line expressing recombinant spleen focus-forming virus (SFFV) env protein. Because XMRV shares >90% overall nucleotide sequence identity with known MLVs, cross-reactivity between anti-MLV antibodies and XMRV proteins has been observed and 50% (9/18) of CFS patients were shown to be reactive [2]. Furthermore, anti-XMRV-positive plasma samples from CFS patients blocked the binding of anti-SFFV env antibody to SFFV env on the cell surface.

Testing Strategies for Detection of Xenotropic Murine Leukemia Virus-Related Virus Infection

I think that Mikovits is saying that the cross-reactivity is not contamination, or not linked to the publicised issue of contamination at least. And it may go some way to explaining why Mikovits et al were so sure they had found XMRV in the later proven to be contaminated samples - because they already had a good indication there was something there. They made the leap about XMRV.

It all depends on when the publicised contamination took place in the chain of events. But Towers told Jon Edwards that he knew the exact point of contamination. So if what Mikovits is saying is true, then Towers et al already know this.

Also note, tho the sample size is small lol, the reactivity was as high as 50%. Evidently this figure has been downgraded in further studies.

 

[RustyJ]

What Lipkin said about the immune signatures of those tested in the CFI study was that there were 2 distinct groups, separated by a time differential. This should have rung alarm bells, because it looks way outside the bounds of coincidence. Leaving aside any discussion of retroviruses or even pathogens, there is still the likelihood that both groups were manifestations of the same condition, one being the later stage of the other. I would like to see any correlations between the cross-reactivity and term of illness.

From an epidemiological point of view, the term of illness data, the term of illness matched to immune signatures data, is probably the most significant to come out in the last couple of decades. What's more, the study was a lot better quality in terms of defining patients than many epidemiological studies on this illness currently being quoted by the CDC etc.

Significantly, it means that if other groups are still looking for a unifying immune signature in patients they are wasting their time and ours. They should stop immediately. The Lipkin CFI study found there was no unifying signature.

Ironically, this should also raise significant questions about Lipkin's microbiome project which doesn't appear to acknowledge a single data point coming out of the CFI study.

If the Mikovits assertions are true - that the cross reactivity has picked up a select group of patients - the relevance of her findings to the whole patient community does lose some significance, because other patients in a different stage of the same illness will not be diagnosed.

However for the importance of future research on a single subgroup, her findings could be the doorway everyone is looking for. Study the group, study the disease mechanisms, find a treatment, find a cause for this group and perhaps, just perhaps the parameters can be extended to the rest of the patient community.

There has been some criticism of use of the term biomarker with reference to the findings, and those criticisms may be correct, technically, tho this has served to devalue the paper, in the absence of positive comments from the same people making the criticisms. This has contributed to the accusations of bias. This is unfortunate because at the very least Mikovits et al have found a clear set of variables to isolate a group of patients for further intensive study. It is what most research relies on to get going.

I've had me/cfs for close to 25 years now. I've seen a lot of conflation and inflation with regard to studies into the disease, including from the current crop looking at immune irregularities in patients. This is the first time someone has clearly identified a subgroup by immune signature linked to a non immune marker variable (the cross-reactivity) for the purposes of further progressing study. This finding is years ahead of any of the so-called cutting edge work being touted around the ridges.

 

[Jonathan Edwards]

What I would like to see on PR, and have seen work very well at times, is more or less what an academic department would call weekly journal club. Somebody flags up a paper and everyone criticises it from their own angle of expertise and at the end of the day you come to some sort of conclusion. When this paper was flagged up I said, in that spirit, that I could not work out what it was really saying. We have had some useful clarification of that but I am still unclear of how the story adds up. It is useful to have Dr Mikovits's input, but as others have indicated, her comments do not actually address the specific gaps in the story I was worried about. I could go in to detail but unfortunately will not have time today.

I am aware that it is perfectly reasonable for people to think that I might have vested interests here, for instance in joining the board of directors of PR. But if you ask anyone in rheumatology they will confirm that I am as anti-establishment as anyone. And let's face it nobody with any attachment to the establishment in that sense, or indeed any political motivations much, is likely to agree to be on the board of PR. PR seems to me to be for people who do not mind what other people think, because they have their own opinions - rare in the establishment. What advantage do I get from being on the board? Frankly nothing other than getting to meet some nice people with a common interest in ME. And having my Sunday evenings a bit less boring once a month when we have a video conference, although it does tend to mess up dinner times sometimes. That is the the extent of 'vested interest' here. It would be nice to stick to the science - and I am afraid that science is mostly about refuting theories - showing they are wrong. That is how you find the right ones.

 

[thegodofpleasure]

Can someone explain, spleen focus-forming virus (SFFV)?

The SFFV envelope protein assay is one that was developed by Sandra Ruscetti and, as Dr Mikovits said in her maessage, "detects all known polytropic and xenotropic gamma retroviruses and does not detect beta retroviruses (including HERVK)."

Whilst it would be nice to provide a link to a paper describing how this assay was developed, no such paper exists, but here are some links to Dr Sandra Ruscetti's work which are relevant to this topic:

Three laboratory strains of spleen focus-forming virus: comparison of their genomes and translational products. http://www.ncbi.nlm.nih.gov/pubmed/6154147

Spleen focus-forming virus: specific neutralization by antisera to certain gag gene-encoded proteins.http://www.ncbi.nlm.nih.gov/pubmed/6971336

Specific neutralization of defective spleen focus-forming virus in Friend virus complex by rat antiserum.
http://www.ncbi.nlm.nih.gov/pubmed/90172

The spleen focus-forming virus (SFFV)-specific neoantigen shares cross-reactive determinants with mink cell focus-inducing (MCF) virus gp70. http://www.ncbi.nlm.nih.gov/pubmed/88803

 

[Countrygirl]

In the years I have known Dr Judy Mikovits personally, I have found her to be a person of extraordinary integrity who has sacrificed nearly all for this patient community in her determination to pursue the cause of this devastating illness. Based on my experience, it is my firm opinion that she is probably the best friend and champion of this community that we have ever had. There have, of course, also been other fine scientists and medics who have sacrificed their reputations and careers in order to attempt to unearth the truth, but I know none who have sacrificed as much as Dr Judy Mikovits nor whom have been so maligned. For this she deserves our respect at least whether or not you agree with her research and I am deeply saddened to read the personal attacks that have been written here on various threads over the years which have no or little basis in fact and are often based on misinformation or half-truths. In a situation where the central figure has been legally denied the right to speak out and defend herself by a corrupt process and certain criminals to tell you the truth then I guess that this is inevitable. I would hope that people will reserve their judgement of the story of what happened between 2009-2012 until they have read the book Plague which will be released in a couple of weeks. Dr Judy Mikovits’ great desire is to further her work on the cause and treatment of strictly-defined ME, but she is starved of funding. This is a great waste.

I think it would be an excellent idea for Professor Edwards to communicate with Judy directly as this could benefit the patient community. Her e-mail is readily available.

 

[Tuha]

And here we go again. We will attack each other because of another opinion and we will see everywhere conspiracy theories. I really dont understand it. I think 99 % of patients visite different forums and they are just searching for informations. What I dont understand - why the researchers or patients who have some concerns about a research - they are immediately called "enemies" because they dont support our hypothesis/research.

So prof. Lipkin is attacked because he doesn´t support Chia´s enterovirus hypothesis. Now prof. Edwards is attacked because he raised some concerns about Judy Mikovits retrovirus hypothesis. So let´s attack all the researchers who are working on other hypothesis because we are so sure that our hypothesis is the best. I have no scientific background but I think science doesnt work like this. We will only discourage the scientist to work in our field.

I talked to many patients about this and they are completely demotivated from this situation and are losing their already small hopes. I also spoke to some patients who are never glad with anything, who accept only their theories I asked them - why they dont try to do something creative instead of being all the time destructive and instead of attacking the people with different opinion. The answer was another critic or that i dont understand anything or no answer or that they are too sick to do something creative (but to spend hours by writing nasty emails make them not sick).

So why not simply to try to make something creative for dr. Mikovits, Chia´s work,.... We can see for example that the crowdfunding campaigns work - so spend your energy by creating a campaign, try to find researchers who will replicate her work, try to get some private donnors instead of attacking the other groups who have maybe different opinions but are certainly not your enemy because of this - we are all on the some boat. I have also my own hypothese where is the main problem - I think it´s in the gut. But now I am not going to attack dr. Mikovits because she believes in retroviruses. I will be even happy if she will raise some concerns for example about Lipkin gut study - it can only move science.
So let´s go to help dr. Mikovits with her work if you think that her hypothese is the best. If you will do a crowdfunding campaign I will probably send some money and I think many patients will do the same. Dont see the enemies where they are not.

 

[Ecoclimber]

The minute the Nova chapter came out it was several “Phoenix Rising” members who immediately attacked it. And that is without even reading or having an understanding of what it is. Many over the years on this forum have unjustifiably attacked Mikovits and her collaborators

No it's about cover-up the manipulation of data and leaving out key information in Science, what you get see is unspecific ERV activities when you treat PBMC with IL-2, PHA and 5-Azacytidine. ‘XMRV’ protein expression was artfully/creatively/falsely demonstrated by treating patient samples (and only patient samples) with epigenetic modifiers, capable of inducing expression of any/all endogenous retroviruses in the patients genome.

Science 2009
“Figure S3. Detection of cloned XMRV-VP62 using a rat mAb to SFFV Env and a goat antiserum to mouse NZB xenotropic MLV.A. Lysates were prepared from XMRV-VP62-infected Raji (lane1), LNCaP (lane 2) or Sup-T1 (lane 3).”…
and
“B. Lysates were prepared from XMRV-VP62-infected Raji (lane 1), LNCaP (lane 2) or Sup-T1 (lane 3).”…

It is from the Online Supporting Material of the Lombardi paper. Can you explain where the “XMRV-VP62″ virus came from other than from cells that had been transfected with VP62 plasmid to produce XMRV (and contaminate the whole lab)
There are no personal attacks other than the discripable

XMRV and chronic fatigue syndrome: For your enjoyment– A magic trick.

Mikovits broke an agreement with Paul Jolicoeur of Montreal, a prominent retrovirologist promising him and myself that he could obtain blood sample from the WPI patient cohort. This delaying tactic backed his research for over one year and then refused Jolicoeur permission to draw blood for his research. She lied. I have the email agreements.

Mikovits was the one to claim discovery of XMRV in CFS samples, and now she wants to blame her mistakes on someone else! It is clear that she received the VP62 XMRV plasmid from Silverman, and then managed to contaminate the CFS samples and/or her assays with this plasmid. The XMRV sequences she published definitively show this. Where were her accusations published Perhaps I should publish a forensic analysis of her bogus research.

Dusty

http://www.mecfsforums.com/index.php/topic,21221.30.html

Then we have the famous Retrovirolgist researcher Gweryn Morris who has various aliases, pseudonyms when blogging on various science blogs and forums attaching various degrees at whim to his name...a very deceptive practice.
He is one of the reviewer for this paper.

Who is Gerwyn:
Gerwyn has accumulated an interesting combination of academic/professional experiences:?
almost doctorate in psychology,
almost chartered psychologist status,
law degree,
No PhD in molecular biology, pathology, immunology, bio-chemisty, virology or retovirology. Never worked in a lab or conducted research.

Came on here in 2007-9 and posted about his degree in psychology suffering from ME with severe ME. Could not write or speak due to severe impaired cognitive abilities but is as able to be the world's leading authority on retrovirology ofter taking to task the lead world renown retrovirologist for failure to carry out a simple graduate level PCR assay.


Profile filled out on PR
About gerwyn morris

Year I came down with ME/CFS
2005?

Currently seeing Doctor...
PrOFFESSOR JOHN DAVIES

Currently trying 'X' protocol
none

Activity Level
5

Location
Wales

Biography
engaged in a doctorate in Counselling psychology when illness struck chronic flu for two years lost

Interests
love gardening phillosophy arguing interior design art chemistry politics wildlife

Occupation
retired due to very ill health now working towards chartered psychologist status also househusband

Most effective treatment(s)
Vitamin B12 injections daily.Magnesium injections prn-collapse without them.Lamotragine effects on H

What I found about Gerwyn
Post under G.J. Morris BSc(Psych) LLB(Land Diplaw) Post with Stephanie Fulton SA16 OAZ Clinical Psychologist Uses the names Bob Jones, Robert Doyle, Gerwyn Johnson

There is a Stephanie Fulton PhD in Montreal Canada Uses numerous email aliases with forged headers IP address traced to London, UK

Dusty,
What bothers me is that he is attempting to sabotage a research study before they have any knowledge or specificity concerning the purpose of the research and thereby could be affecting the lives of millions of ME/CFS suffers. I have never seen this kind of attack even on their UK researcher studies. I swear that he is working for Simon Wessely.\

http://www.mecfsforums.com/index.php/topic,4448.0.html
Thread started by:?
Re: Why I am so concerned about the dusty miller study

From GERYWN:
If you have ME and are XMRV positive please don’t give blood for this study. they are interested in xmrv for prostate cancer I will leave the rest to your imagination let me say I suspect no association ?will be found!!?

From omerbasket last post on the above thread I don't disagree with you (although i meant that researchers don't necessarily think that tha IAP would pick up human sequences - I didn't mean that they think that the IAP would not necessarily pick up human sequences. Some [not all researchers are pretty much naive about that and doesn't know every little detail - important details, but ones which are hard to know).

Gerwyn, I agree, we should stop this now, but I think that it is also very important that you'll write something that would explain all of that, and also think that we should make it widely known to all of ?the scientists. Very, very important.

This is a prosperous statement given the fact that early on I told them that you were finishing up your xmrv research in prostate cancer and moving into researching the role xmrv plays in ME/CFS patients.Dusty, at the very beginning I contacting Gerwyn to give him a chance to play an active role by making a contribution. I asked his help on what he would consider should be a good research study and the pitfalls to avoid. It is apparent the assaults and attacks seem to plague every positive xmrv study that comes out. His answer is that he was not well and besides a good researcher should know this. I quite frankly believe there are some deep psychological issues affecting Gerwyn that should not be discarded. The unfortunate aspect in all this is the fact that this disinformation is spread throughout the ME/CFS community and just doesn’t stay within the forum boards.

The Other thread is
http://www.mecfsforums.com/index.php/topic,1626.0.html?

Topic: Susceptibility of the human retrovirus XMRV to antiretroviral inhibitors

A influential patient called Gerwyn in the mecfsforums has lead the charge. Among others he has accused Dr. Miller of not having any experience in the field (easily refuted, and, of using a test for contamination (IAP) that will generate false positive - thus dooming the study. He has associated Dr. Miller with Dr. McClure (in order to damage his reputation), a graduate student who stepped in was accused of lying and blogs were posted across the internet imploring patients not to participate in the study. Dr. Miller had provided several responses which have been mostly ignored in the frenzy that has developed - one of which is below.

A basic tenet of science is that results obtained in one lab should be reproducible in other labs. We plan to use many of the same techniques used in the Lombardi et al. study from the WPI, and some additional techniques we have developed, to detect XMRV. One of the criteria for inclusion in our study is that subjects must have tested positive for XMRV by another lab. Thus, we hope to include subjects who are likely to be positive, and it would be very helpful to study some who have previously tested XMRV-positive by the WPI.

If we find positives, we will have reproduced the findings of the WPI and others, and will continue to work on the virus and its possible role in CFS/ME. Would you be willing to say anything in support of Dusty Miller and his work or clear up some misgivings about the IAP test. I know this is an unusual request but our worry is that this study - which we were so excited about - and felt could strongly support your work is getting so slammed by patients, of all people, that Fred Hutchinson will not want to be involved and the study will disappear. It's a bizarre situation

To some extent it was our fault for posting a preliminary advertisement of the study before IRB approval and not pulling the post immediately.

He has maligned, defamed the reputation of practically every renknown retrovirolgy scientist, he has committed libel, he has underline the business aspects of researdh, he has been deceptive, he has lied about his qualifications, he has slander, he has sullied the reputation of these scientists, debase their ethics, he has slander, he has managed to get the real scientists to place the label of crazies and militants on the the ME/CFS community.

His actions, the actions of Mikovits and her ilk have damage the credibility and the legitimacy of this illness within the research community The mainstream research community are furious with the antics of (Do no wrong) Mikovits. She is always the victim. It is everyone else that is after her. She is the savior

Because of her behavior, it has impacted the desires of researcher of ever wanting to help this community. Already, forces are beginning to array against Jonathan Edwards in an attempt to discredit his research and reputation.

 

[duncan]

So.....there is no merit to the abstract RustyJ posted at the beginning of this thread? No reality behind the claims of faulty innate immune system and a decrease in NK cells and an increase in NKT cells?

The antibody to the SFFV protein is meaningless? Or unclear? Or unsubstantiated?

Pretend Mikovits et al were not behind this chapter. Where does the Science stand on its own, where can it not?

 

[Battery Muncher]

Can we please leave the medical politics and get back to the science? This is turning into a car crash of a thread.

If you want to discuss the XMRV controversy, there are three seperate forums for it.

 

[Mark]

I rarely have time to post on the forums these days, but I feel I have to respond to some of the misleading nonsense posted earlier in this thread, provoked by this extract from a communication which thegodofpleasure tells us is from Dr Mikovits, posted at #57 in this thread:

It saddens me that Phoenix Rising and the scientific community continue to harm the patient community not because of bad since [sic] but because of conflicts of interest and bias that prevents an open and honest look at all of the data...

First, let's read that carefully and note that this quote does not allege conflicts of interest and bias on the part of Phoenix Rising or anybody here at Phoenix Rising. It does not specify what the alleged conflicts of interest and bias are, and it doesn't specify who is being referred to. It is quite possible that Dr Mikovits is referring to alleged conflicts of interest and bias elsewhere.

Although Jonathan Edwards has responded that

I am aware that it is perfectly reasonable for people to think that I might have vested interests here, for instance in joining the board of directors of PR.

I will add that, personally, I do not think it is reasonable to vaguely allege or suggest conflicts of interest against an individual or organisation without presenting any evidence whatsoever in support of the claim. I do not know who Dr Mikovits was referring to, but if it really were a claim about Phoenix Rising, its board, or its members in general, then that would be outrageous, potentially defamatory, and certainly false.

Next, to address the question of 'direct' communication between Drs Mikovits and Edwards, which Jonathan and RustyJ both mentioned:

To be fair, Mikovits probably wishes you had communicated with her directly .

I think RustyJ is missing the point here. Jonathan made some comments in this thread, about the paper/chapter being discussed in this thread, which is a perfectly reasonable thing to do. Members comment regularly here on published research, from a variety of perspectives (some more informed than others) and there's nothing wrong with that. Jonathan's point about the indirect communication, I think, is that when the communication from Dr Mikovits was relayed second hand to us by thegodofpleasure, we can't actually be certain that this really was from Dr Mikovits (though I expect it was). (We also don't know whether the typo in the quote above was in Dr Mikovits' original communication). I don't know what prevents Dr Mikovits from posting here publicly and engaging in a direct conversation with the community (Jonathan included) about these issues. I know it's been claimed that there are legal reasons for that, although to my knowledge Dr Mikovits has never posted on a patient forum, even before those legal reasons were a factor. Whatever the reason, it is certainly not ideal to communicate with her via an intermediary.

But more importantly, I think it's extremely important and timely for the community to think very seriously about this question of 'conflicts of interest' and 'vested interests', however uncomfortable that might be for some. RustyJ has suggested that the 'conflicts of interest' that Dr Mikovits (we presume) was referring to were intended to apply to (unspecified) 'elements' in the PR community, and that Jonathan joining the board of Phoenix Rising means that he now has 'vested interests':

Not sure that the 'vested interests' label has been attached to you, rather to elements in the PR community. And it would be naive to believe there are no vested interests involved in this discussion.

However, since you have joined the administration of PR, then in that respect you have vested interests and that is certainly a legitimate matter for debate for some elements of the PR community.

RustyJ added:

As far as I know the term 'vested interests' is used to describe an association and the various dimensions of that association. I have no wish to debate what those dimensions could possibly be. That is off topic. I made the comment simply to point out that aligning oneself to a particular group, no matter how regarded (negatively or positively) automatically shifts how that person is viewed by non-aligned groups.

I'm not particularly surprised that RustyJ has no wish to tell us any more about these alleged 'vested interests' because, since they don't exist, he won't have any detail to offer us about them. But however off-topic it may be, I'm going to challenge him now to 'put up or shut up' as far as these vague allegations are concerned. Just what are you talking about when you claim there are 'vested interests' involved here at PR, RustyJ? Do you have any evidence to support your claim?

What is a 'vested interest' anyway? 'Vested interests', or 'conflicts of interest', most usually refer to a financial stake in a particular outcome, which conflicts with the responsibilities associated with a certain position and which may influence decision-making in a way that is inappropriate or is not transparent. Sometimes a 'vested interest' may not be directly financial, but the term implies an 'investment' in something, and some element of personal gain.

This is an extremely important point for everyone to take note of, so I will bold it: None of the Phoenix Rising Board members has any 'conflict of interest' or 'vested interest' whatsoever in relation to our work at Phoenix Rising or in relation to ME/CFS in general. No board member (since Cort left) has ever received any financial compensation for the work we do. We are volunteers. Our only interest is an interest in the well-being of ME/CFS patients, and a passionate desire to further the cause of ME/CFS patients worldwide. In that sense every one of us here has an 'interest' in ME/CFS, but that is NOT what we mean when we talk of a 'vested interest'.

This is an extremely important point, because many other people and organisations involved in the world of ME/CFS do have a major financial interest in what they are promoting to ME/CFS patients. Dr Mikovits certainly does, since she makes her living from her research career. Dr Deckoff-Jones makes her living from patient consultations. LANDRES Management Consultant, MAR Consulting Inc, and Dr Mikovits' forthcoming book are all examples of direct financial interests. This is obviously not to say that having such financial interests is improper, but it is important to understand the potential implications of those financial interests. When somebody is trying to sell you something and you're not sure whether it's a con or not, it is very relevant to consider what personal stake that person may have in what they're selling you.

At Phoenix Rising, we have no such personal financial interests. We are here, not for our own benefit, but in order to do something to progress the cause of ME/CFS patients worldwide, and that is our only interest in being here. Most of the board are patients, so we have a personal interest in getting better. Jonathan is an experienced (and retired) researcher, so he has relevant knowledge, expertise, and well-informed opinion, but that does not constitute a vested interest.

We actually have an extremely strict policy on conflicts of interest and financial interests in particular, because we think that is extremely important for this organisation - so much so that we don't allow members to directly promote anything in which they have a financial interest themselves. In this way we can keep the discussion on Phoenix Rising independent and free from financial conflicts of interest.

However, when RustyJ says that 'it would be naive to believe there are no vested interests involved in this discussion' he is, sadly, partly correct. It would indeed be naive to suggest that vested financial interests do not attempt to manipulate the discussion on Phoenix Rising; they certainly do try to do that. For example, some time after the fact, we discovered some posts on this forum that were posted back in 2009, by two different users purporting to be patients, reporting their positive experience with VIP Dx, RedLabs USA, and XMRV testing, and advising members on how to sign up for XMRV testing with RedLabs. It turned out that these posts had been submitted from an IP address at RedLabs USA. We also found a similar set of posts from GcMAF.eu salesmen, using multiple accounts from the same IP address at GcMAF.eu, pretending to be ME/CFS patients. All of those posts were removed, but I regret that, due to pressure of work and the legal concerns involved, we did not manage to reveal to the community what had happened, as I very much wanted to do. Anyway, we do pay great attention to such matters and we are always on the look-out for conflicts of interests in our members, but it is indeed true that we can never guarantee that nobody who posts here has a financial motivation for promoting what they are promoting. What we can guarantee is that we will do our very best to identify and remove such posts.

Finally, RustyJ has claimed that there have been 'many personal attacks' on Dr Mikovits on this forum:

Yet it is okay for the PR community to attack her? I have read many personal attacks on Mikovits on this forum prior to this thread, and I think her comments must be viewed in this light.

I am not sure exactly what RustyJ is referring to, but in the course of our public discussions about XMRV there have of course been some members who support Dr Mikovits and some members who have been sceptical and who have raised questions about her. As moderators, we have done our best to remove anything insulting or defamatory, but we never wish to 'censor' any discussion, and reasonable questions about anyone's research can be raised and discussed here. We believe that an open discussion, where all points of view can be politely represented, is a fundamentally important and very valuable service that Phoenix Rising provides to the worldwide ME/CFS community.

I don't know whether this post would count as the sort of thing that RustyJ doesn't like:

I would like to know any and all competing financial interests in relationship to the work described by the authors of this study.

Whether RustyJ objects to that question being asked or not, in the context of this (off-topic) discussion about conflicts of interest, it seems to me a perfectly legitimate question, because a statement of competing financial interests is quite rightly a standard requirement for academic research.

I don't know whether Dr Mikovits meant to suggest that Jonathan Edwards, Phoenix Rising, or its board of directors have 'vested interests' - I hope and expect that is not what she meant - but the fact of the matter is that we clearly don't have any such vested interests, whereas Dr Mikovits clearly does. That does not necessarily mean that Dr Mikovits is not also concerned with the well-being of ME/CFS patients; many people make money from doing something they believe in passionately. With Phoenix Rising, though, you can be assured that a concern for the well-being of ME/CFS patients is our only interest in doing what we do.

 

[Marco]

What I would like to see on PR, and have seen work very well at times, is more or less what an academic department would call weekly journal club. Somebody flags up a paper and everyone criticises it from their own angle of expertise and at the end of the day you come to some sort of conclusion..

Good idea - that would add a very useful/interesting dimension to the forum.

 

[liquid sky]

I would really like to see some further research using this antibody reaction to SFFV in ME patients. A study with patients that test positive and an equal number of controls. Most arguments against this research has been either against the significance of this reaction or the off topic discussion of disliking Mikovits.

The reaction would not be so significant if it was not accompanied by specific immune dysfunction and in people with very significant neuro-immune complaints. It is only a beginning, I agree, but it needs to be followed up on.