Innate Immune Changes in the Peripheral Blood

[Undisclosed]

Since a post from this thread was copied and pasted onto another forum and as a volunteer of Phoenix Rising who gives a damn about Phoenix Rising I would like to correct a few outrageous and ridiculous lies being posted about PR. This kind of stuff needs to be corrected and rectified. It doesn't do anything for our community to be tearing each other apart with lies and innuendo.

1. RE: Some of you claiming you don't post here - untrue.
2. RE: claiming we re-write conversations -- untrue.
3. RE: that we delete and rewrite messages to control the message -- untrue.
4, RE: supporting the CAA, Pandora and WPI -- untrue -- members here support who they like, content writers can write articles, we don't support any organization over another.
5. RE: Allowing paid trolls to pose as patients on this forum and even making them moderators. -- untrue and ridiculous.
6. RE: Having Wessely and Bad Science paid trolls on Phoenix Rising -- untrue and ridiculous
7. RE: It's quite obvious what Jonathan Edwards is doing and what he supports -- I think Mark addressed that in his post.

If you have any proof of these unfounded and ridiculous accusations please post them otherwise stop making crap up because you don't like people actually questioning research.

And there is more:

1. Who is donating money to PR -- well let's see -- mainly people who choose to remain anonymous so really if we don't know them we can't be promoting their agenda.
2. Who is getting paid to speak -- nobody.
3. What is really going on behind the scenes. -- the same as going on publicly. Feel free to volunteer and find out that we are who we publicly say we are -- in the back channel and in public.
4 The affiliate links aren't supporting that place -- not totally but they help pay the bills for the servers, chat software, other software and the content team writers who get 50 dollars per article.
5. They need more money than that coming in. -- No we don't our donations and affiliate earnings are more than adequate in keeping us running. We pay no salaries. Our costs are paying the servers, for our software, and for a few of our writers.
6. They need other monies coming in to support that place. How so? We pay our bills. We have no staff earning a salary.
7. When a place like that is heavily moderated and the posted are doctored, why people keep going there, i have no idea- its no different than Nazi Germany or communist China or Soviet Union im not being extreme saying this because that is exaclty what was done in those places. -- Please join the moderation team or volunteer in another capacity and see that posts are not doctored. Keeping the forum free of personal attacks is something we strive for. Is that so bad?

It's time our patients stop attacking each other based on lies and innuendo. If you want to know something ask. If you don't like Phoenix Rising - fine. But why spread these ridiculous unfounded lies. It achieves nothing except to divide the community.

If you have serious questions related to how Phoenix Rising is run, how much money is donated, what it costs to run the site, please feel free to contact a staff member and ask. Don't believe lies posted on other websites. If somebody questions research, what's the point of attempting to discredit a poster or a website. Let's talk science -- that's a wonderful conversation to have.

Here is another one:

And doesn't everyone find it rather strange that a retired researcher is sitting on a patient forum asking those patientsi f they can explain a science book chapter to him? He must be hard up for something to do and the pay must be good.

We pay Jonathan Edwards nothing. NOBODY is paid a salary on Phoenix Rising.

Let's talk science.

More science, lots of science.

 

[Marco]

Since a post from this thread was copied and pasted onto another forum and as a volunteer of Phoenix Rising who gives a damn about Phoenix Rising I would like to correct a few outrageous and ridiculous lies being posted about PR. This kind of stuff needs to be corrected and rectified. It doesn't do anything for our community to be tearing each other apart with lies and innuendo.

Let's talk science.

More science, lots of science.

I'm sure Kina and the rest of the PR volunteers know what's best for PR.

Personally I wouldn't worry too much about what's being posted by a handfull of people who are of course entitled to their opinion but seem to want to resurrect some old and unproductive arguments.

 

[Bob]

Kina, I know you want to protect this forum from false accusations, but I don't think it's necessary to respond to the allegations. Everyone who uses this forum does so because it's a safe, respectful, friendly and constructive community. There are a wide range of different opinions on this forum and this is a safe place for us to respectfully explore our differences of opinion. That's what makes it such an amazing and strong forum.

Differences of opinion are able to flourish in a respectful and friendly environment. Every regular member of this forum knows that this is a decent and fair forum. None of us feel censored, and many forum users are involved in a multitude of independent advocacy projects, including many popular crowdfunding projects for biomedical research. Forum members have had many letters and papers published in journals that e.g. have refuted and rebutted claims about psychological interventions as alleged cures for ME. We've been involved in petitions, letter writing campaigns, and submissions to committees (e.g. submissions to IOM and P2P, either against their process, or in support of the biomedical case for ME.) We've made popular videos, we've had letters published in newspapers and journals, we've analysed data and research, and we've written popular science blogs. We've reported live from conferences and written conference reports. We've interviewed leading researchers and clinicians. We offer each other (invaluable) caring and compassionate support. We explore treatments, we discuss nutrition and alternative therapies. We direct each other towards good clinicians and clinical trials. This is an active community that we're all proud to be a part of. None of these activities have ever been stopped or censored by the moderators to my knowledge. Anyone who is not aware of all of this work that we do here, and who isn't aware of the amazing broad community that we have here, clearly isn't a regular user of Phoenix Rising, and therefore knows little about the people here or the amazing work we do.

There are a wide range of unhindered discussions on a multitude of topics, including treatments, conferences, diagnostic criteria, politics, symptoms, personal stories, scientific developments, etc etc etc.

There is a relatively high degree of moderation on this forum because that's what the members want. We want a safe environment where we can participate without being attacked by people who are unable to participate in friendly, supportive or constructive discourse. Those who don't like the rules here tend to go elsewhere (and then seem to spend much of their energy criticizing this forum.) I've personally been moderated on Phoenix Rising on many occasions when I've become involved in heated arguments, but I understand the rules and I recognize that I transgressed them, and I respect the moderating decisions because they've always been fair with respect to my own postings, and when I've seen them being implemented on the forum in general. Moderating is a notoriously difficult thing to do,and is not always going to be a perfect science, but if you are part of any community then there are always rules, and the rules have got to be overseen. It's a fact of life. I acknowledge that some of the rules seem over-bearing to some people and that they don't suit everyone, but that's always going to be the case on any forum.

This forum is a supportive community of patients, carers and researchers, and the vast majority of members are deeply proud to be a member of the forum, and are very grateful for it.

We have members on this forum who think the XMRV saga was good for the community, and others who think it was bad for the community. Likewise, we have members who are broad supporters of Judy Mikovits and her work, and those who think she has done the community a disservice. It's a contentious subject and there are a range of strong opinions throughout the community. Our lengthy discussions in our XMRV sub-forums demonstrate that we have both vocal supporters and vocal detractors. As a point of interest, I'm on the record as having always been a staunch supporter of Judy Mikovits, and an enthusiastic follower of the XMRV science, and I've never been moderated in relation to my opinions re XMRV or Judy Mikovits. I've only been (fairly) moderated when my discussions became heated arguments and I transgressed the rules re my behaviour towards other members. Those rules make Phoenix Rising the safe environment that I enjoy.

 

[Ecoclimber]

The evidence is overwhelming concerning Mikovits. She made classic mistakes, manipulated data, change figures and labels and amplified solutions not mentioned in Science. She then puts the blame squarely on Silverman. The VP-62 did not hop over to her cultures and contaminated just her cultures and no one else’s.

In fact, Groom et al.
I believe, in any samples by PCR, however, some serum samples were able to neutralize XMRV infectivity in our assay. Only one of these positive sera came from a CFS patient, implying that there is no association between XMRV infection and CFS.Furthermore, most of the positive sera were also able to neutralize MLV particles pseudo typed with other envelope proteins, indicating there may be cross reactivity with other retroviruses and even other enveloped viruses. It therefore seems unlikely that these responses were elicited by XMRV.

She could not even detect xmrv in her own patient cohort under double blinded conditions in the blood working group. She chastised for years those scientists who could not find xmrv. Then when the evidence was no longer in question that xmrv was a contaminant, she changed her story and said I didn't really mean to say what we found was xmrv but hgrv. Huh? If that is so 1. Why didn't she disclose this very important omission in Science. 2. If she found hgrv's why didn't she post them on GENBANK.. When she finally did, there was no diversity from xmrv. 3. Now she is claiming SFFV is causing every disease known to man as she did with xmrv without one scintilla of proof. Show the us the exact steps. Put the sequences on GENBANK.

Then, we have 'Gerwyn Morris' who reviewed tthe Mikovits/Ruscetti paper/abstract in a book from Nova-Science-Publishing. Gerwyn Morris a peer reviewer?? You've got to be kidding me. A patient who claimed to be a psychology graduate that has severe case of ME and neurological dysfunction in 05-09 on PR and within a time span of a just a few years ressurrected himself to become a leading expert in bio-chemistry, molecular biology, virology, pathology and retrovirology. Who has the audacity to lecture the world's renowned retrovirologists on the scientific method and conducting experiments on how to find xmrv? Give me a break. Someone who used various sock puppets identities and pseudonyms with varying degrees associated with those identities dependent upon which blog or research article he was commenting on.

How do we know that Gerwyn Morris name is real? Maybe it is Gerwyn Jones or some other name? His name is associated with Michael Maes, MD, PhD. Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands along with other departments of psychiatry in various parts of Australia and Thailand. Perhaps this person is the one feeding or writing the postings for Gerwyn Morris/V99. Maybe, Gerwyn Morris is Michael Maes. Gerwyn's addresses and emails keep changing with no degrees listed.

The reason I am asking is that it is somewhat disconcerting and perhaps unethical that a researcher places their name on a paper with a fictitious address and no contact info. on some research papers which seem to change from time to time. His storyline, the deception by using various sock puppet pseudonyms while defaming and libeling other world renown retrovirologists to the point that he stated they can't even perform a simple undergraduate level assay is very malicious indeed. One who on a consistent basis refuses to acknowledge any discrepancy, methodology, flawed reasoning or scientific mistakes pointed out by many and I mean many scientists reminds me of another scientist who has the same attitude. A peer reviewer who does not disclose that he ever conducted one research project or has seen the light of day inside a lab. I challenged him since he knew so much about finding xmrv and considered every renowned scientist in the known world a buffon by doing their procedures wrong, to grab a lab coat, find a research lab and conduct the correct steps that would find xmrv in ME/CFS patients. He never took me up on the challenge....hmmm

So it begs the question, why would he peer review a research paper without the proper credentials. If the tables were turn, wouldn't he say the paper/abstract was a joke, didn't follow the scientific method and failed to established specific cause and effect of massive immune dysfunction by SFFV?

So now I, Cort, Jonathan Edwards, PR, the Whittemores, the PR staff, Lombardi and others are now under the same vicious, egregious, malicious libelous attacks, defaming our reputations with complete lies by Robyn, Ess, AnneSpaceCoast, Patricia Carter and other militants over on the flat earth forum.

Then there is this:

Doesn’t explain how plasmids magically got into patient samples, or why they lied about epigenetic modifiers,
Treatment of CFS patient PBMCs with 5-azacytidine was omitted from Lombardi et al. paper

In September 2011, Abbie Smith, a graduate student and virology blogger, (http://scienceblogs.com/erv/) revealed that Dr. Judy Mikovits, the corresponding author of the Lombardi et al. study, presented a figure at a meeting that turned out to be identical to one in the original paper, but with different patient numbers and experimental conditions (John Cohen, ScienceInsider, http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html). This revelation led the authors to concede that the patient-derived PBMCs in Lombardi et al. had been treated with 5-azacytidine, an agent used to demethylate DNA and induce transcription from latent genes and proviruses, but did not include this treatment in the paper because “it was not germane.” The omission of such critical information from the paper cast further doubt on the validity of the entire study.

Science is fully retracting the Report “Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome” (1). Multiple laboratories, including those of the original authors (2), have failed to reliably detect xenotropic murine leukemia virus-related virus (XMRV) or other murine leukemia virus (MLV)-related viruses in chronic fatigue syndrome (CFS) patients. In addition, there is evidence of poor quality control in a number of specific experiments in the Report. Fig. 1, table S1, and fig. S2 have been retracted by the authors (3).

In response to concerns expressed about Fig. 2C [summarized in (4)], the authors acknowledged to Science that they omitted important information from the legend of this figure panel. Specifically, they failed to indicate that the CFS patient-derived peripheral blood mononuclear cells (PBMCs) shown in Fig. 2C had been treated with azacytidine as well as phytohemagglutinin and interleukin-2. This was in contrast to the CFS samples shown in Figs. 2A and 2B, which had not been treated with azacytidine.

Given all of these issues, Science has lost confidence in the Report and the validity of its conclusions. We note that the majority of the authors have agreed in principle to retract the Report but they have been unable to agree on the wording of their statement. It is Science’s opinion that a retraction signed by all the authors is unlikely to be forthcoming. We are therefore editorially retracting the Report. We regret the time and resources that the scientific community has devoted to unsuccessful attempts to replicate these results.

Credit to ERV:
XMRV and chronic fatigue syndrome: Why?

When a disaster happens in science, like the XMRV fiasco, the most important lesson everyone can take away from the incident is ‘Why?’

If you understand the ‘Why?’ behind what happened, you can avoid the problem in the future.

So specifically in the case of the XMRV fiasco, the question was, “Why did samples in this study appear positive, while no one else could replicate the findings?”

The answer was contamination, contamination, contamination.

MLV viruses are in our cell lines (we already knew that) and mouse gnomic DNA, chock full of mouse ERVs, were in all of our reagents.

Well, neato. This means that if you are doing experiments in the future, you need to be on the lookout for these forms of contamination. Hurray.

… No, not really. I am not satisfied at all with the answers put forth to ‘Why?’

See, Bob Silverman already answered a ‘Why?’ long before the official retraction. He found XMRV plasmid (amp resistance genes, unquestionably, incontrovertibly from plasmid) in patient samples. Okay, fine. I guess that totally could have happened on accident (**WINK!!**). Whatever.

And I (and others) figured out that ‘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.

But we were still left with a cartload of ‘Why?’s in this paper.

I was hoping Frank Ruscetti retesting some of the Science samples with the help of John Coffin would answer the remaining issues with the Science paper, so we could all understand the ‘Why?’ behind the rest of the mistakes so we don’t make them ourselves.

Multiple Sources of Contamination in Samples from Patients Reported to Have XMRV Infection

It did not.

Technically, it made things worse.

See, we *KNOW* from Bob Silverman’s independent retraction that there was XMRV, VP62 plasmids spiked into the patient samples he had. We *KNOW* that.

And yet…

That is not what Kearney et al found in their samples. They found mouse DNA/mouse ERVs.

The three methods yielded concordant results for all 9 samples and provided unequivocal evidence that the plasma samples provided to us from 4 of the CFS patients originally reported [12] to be XMRV infected were contaminated with mouse DNA.

Now.

But in 2009, those sequences were unquestionably iterations of VP62. If Lombardi et al had ‘found’ mouse DNA contamination before, then their data should have mirrored Lo et al. It didnt.

What??

This paper does explain *one* ‘Why?’– XMRV plasmid or mouse DNA in serum samples will not induce expression of infectious retroviruses. This group tried to figure out what went on with Mikovits/WPIs super magical co-culture experiments. Turns out all the cell lines they used are infected with XMRV.

But then how were their ‘mocks’ negative?

And we are still left with how 100% of their patient cells stained positive for flow, when an elaborate voodoo ritual needed to be performed in order to get the samples to test positive for XMRV via PCR. And now we have more, new, ‘Why?’s.

Ugh.

Perhaps a forensic study of Mikovits notebooks might divulge the answer.

 

[alex3619]

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.

Otherwise known as critical rationalism, the cornerstone of modern scientific philosophy. Notable in its absence in much of psychogenic psychiatric research.

I have said this several times privately, recently, but I would like to state it publicly, omitting some of the detail. I have shot down theories from various researchers, privately, several of whom are known on PR. I have had my own ideas shot down. If people are genuinely wanting answers, then at some point the ideas not only can, but must, come under attack. Please note, this is about ideas, not individuals. What was the outcome? We all came away with better understanding of the issues.

At times I disagree with many. Many disagree with me. Yet when its from people who really want to find the answers, how can anyone mind?

Personal attacks, character assassinations, are something else. I think Judy Mikovits has had a rough time of it, and often undeservedly. That's opinion, I still don't know much of what went on. No scientist should be subjected to the kinds of things that occurred.

Yet there are different phases of research. Inductive reasoning is anathema to late stage research, but quite valuable in the initial exploratory stages.

Early research is usually not definitive, but suggestive. The only problem arises when it is presented as definitive.

Late stage research needs to be tested, and that includes public scientific criticism. That is how we know if research is robust. It also includes high quality studies, including independent studies, which test aspects of the model or hypothesis.

Its a fact that in science many hypotheses are wrong. This is often not a reflection on the researcher. It takes guts to spend years of your life devoted to research that in the end may be disproved. I respect that.

Being disproved is almost the norm. Things get disproved continually till they get to a point they appear to be too robust to disprove. At that point they should be accepted ... with the proviso that any hypothesis can be disproved at some point. We just don't know which will be shown to be wrong before it happens.

 

[lansbergen]

Ecoclimber claims a lot but no word about how to exclude ERV activation associated with the infection I suspect.

 

[MeSci]

Anyone else wondering what on earth this battle is all about?

BTW I fully understand @Kina's need to refute false accusations that attempt to discredit both PR and the hard-working unpaid volunteers who run it.

I have experience of being on the receiving end of such hurtful abuse, having been drafted in to rescue a student society when I really wanted to focus all my limited time and energy on my studies, which was already hard with ME. I got accused of being involved out of vanity, of being rude and abusive at a conference (which I had never attended!) and of 'preaching', all completely unfounded, but it can really hurt.

I don't understand why some people seem to enjoy making life even harder for people who are doing their best to help others.

 

[Bob]

Anyone else wondering what on earth this battle is all about?

I don't understand all the politics but, in a nutshell, we're a bunch of very ill patients, experiencing extreme personal challenges and medical neglect, desperately clinging onto glimmers of hope. When those glimmers of hope seem to be under threat, then people (understandably) react. I think it's just a shame that we can't be slightly more pleasant and understanding towards each other, and not always jump to the worst possible conclusions before a dialogue has even begun.

 

[thegodofpleasure]

@Jonathan Edwards After reading the information contained in the "Nova Chapter", do you think that there is merit in adopting Dr Mikovits' suggestion to use the SFFV antibody test as a means to identifying a cohort of patients who are more likely to respond to B Cell depletion therapy in the forthcoming UK Rituximab study ?

Irrespective of whether the SFFV Ab assay were to be used as a screening test for inclusion in future Rituximab trials, would it not be a useful thing to do, to correlate patient response to Rituximab to their SFFV Ab status ?

 

[Undisclosed]

Anyone else wondering what on earth this battle is all about?

BTW I fully understand @Kina's need to refute false accusations that attempt to discredit both PR and the hard-working unpaid volunteers who run it.

I have experience of being on the receiving end of such hurtful abuse, having been drafted in to rescue a student society when I really wanted to focus all my limited time and energy on my studies, which was already hard with ME. I got accused of being involved out of vanity, of being rude and abusive at a conference (which I had never attended!) and of 'preaching', all completely unfounded, but it can really hurt.

I don't understand why some people seem to enjoy making life even harder for people who are doing their best to help others.

I just get sick of reading lies about Phoenix Rising that involve me, other moderators, and the Board. I did think about not saying anything but sometimes enough is enough.

I don't understand all the politics but, in a nutshell, we're a bunch of very ill patients, experiencing extreme personal challenges and medical neglect, desperately clinging onto glimmers of hope. When those glimmers of hope seem to be under threat, then people (understandably) react. I think it's just a shame that we can't be slightly more pleasant and understanding towards each other, and not always jump to the worst possible conclusions before a dialogue has even begun.

Indeed.

@Jonathan Edwards After reading the information contained in the "Nova Chapter", do you think that there is merit in adopting Dr Mikovits' suggestion to use the SFFV antibody test as a means to identifying a cohort of patients who are more likely to respond to B Cell depletion therapy in the forthcoming UK Rituximab study ?

Irrespective of whether the SFFV Ab assay were to be used as a screening test for inclusion in future Rituximab trials, would it not be a useful thing to do, to correlate patient response to Rituximab to their SFFV Ab status ?

Good question and to get us back on topic, I hope @Jonathan Edwards will have time to reply.

 

[Jonathan Edwards]

@Jonathan Edwards After reading the information contained in the "Nova Chapter", do you think that there is merit in adopting Dr Mikovits' suggestion to use the SFFV antibody test as a means to identifying a cohort of patients who are more likely to respond to B Cell depletion therapy in the forthcoming UK Rituximab study ?

Irrespective of whether the SFFV Ab assay were to be used as a screening test for inclusion in future Rituximab trials, would it not be a useful thing to do, to correlate patient response to Rituximab to their SFFV Ab status ?

I think the data from Dr Mikovits's group would go in with a lot of data from other groups that has so far not yet been found to be reliably reproducible. This is the big problem we have had in making use of any testing system to select or stratify patients for a trial. We need something that gives the same answer repeatedly. The extra difficulty with using antibodies to SFFV is that the data from Dr Goetze do not even come with a control group of antibody negative CFS patients or an indication of the proportion of CFS patients with a high titre, or indeed any indication as to what should be considered a cut off titre.

So I am very interested in any test like this, indeed, if it can be shown to be reproducibly different in ME/CFS and if it correlates with immune features, but so far this test does not qualify. We also have the apparent catch22 that if this test does indeed mark a subgroup with immunodeficiency then maybe they should not be included in a rituximab study (which maybe seemed to be the message in the paper). There does not seem to be anything about the findings that would suggest that this would be a good group to treat with rituximab, which specifically targets B cell related problems.

 

[jimells]

I just get sick of reading lies about Phoenix Rising that involve me, other moderators, and the Board. I did think about not saying anything but sometimes enough is enough.

I agree these kind of attacks on our little group are hard to take. But I take great satisfaction from seeing the psychobabblers frothing at the mouth. It suggests that our demands to be taken seriously and treated with respect are having an effect.

The established order is getting nervous. They are losing control of the message. Despite years of effort at controlling the direction of research by the CDC/NIH/psychobabblers, privately funded research by competent researchers is moving ahead.

First they ignore you, then they ridicule you, then they fight you, then you win.

 

[duncan]

Dr. Edwards, I'm perplexed by your statement that "We need something that gives the same answer repeatedly". But this proposed antibody test, when refined, and naturally, replicated, would only be applicable to the specific subgroup it helps identify, yes? It would be almost meaningless - not entirely because it acts as an exclusionary metric - but almost meaningless for other subgroupings falling under the ME/CFS umbrella.

I also don't see the tie to rituximab in the abstract, but it could be that it's simply too nuanced for me. Actually, it may well be right there staring me in the face, and I could still miss it.

 

[Bob]

I also don't see the tie to rituximab in the abstract, but it could be that it's simply too nuanced for me. Actually, it may well be right there staring me in the face, and I could still miss it.

See page 101 (their page numbers) of the full PDF document for some discussion about rituximab. (There might be more - i haven't read it all yet.)

 

[duncan]

Thanks, Bob. Why isn't it the abstract? Because it's in the PDF. How does one make the print blush with embarrassment?

 

[Bob]

Thanks, Bob. Why isn't it the abstract? Because it's in the PDF. How does one make the print blush with embarrassment?

blame the brain fog - I always blame the fog!

 

[liquid sky]

I think the data from Dr Mikovits's group would go in with a lot of data from other groups that has so far not yet been found to be reliably reproducible. This is the big problem we have had in making use of any testing system to select or stratify patients for a trial. We need something that gives the same answer repeatedly. The extra difficulty with using antibodies to SFFV is that the data from Dr Goetze do not even come with a control group of antibody negative CFS patients or an indication of the proportion of CFS patients with a high titre, or indeed any indication as to what should be considered a cut off titre.

So I am very interested in any test like this, indeed, if it can be shown to be reproducibly different in ME/CFS and if it correlates with immune features, but so far this test does not qualify. We also have the apparent catch22 that if this test does indeed mark a subgroup with immunodeficiency then maybe they should not be included in a rituximab study (which maybe seemed to be the message in the paper). There does not seem to be anything about the findings that would suggest that this would be a good group to treat with rituximab, which specifically targets B cell related problems.

We don't need antibody negative CFS patients. We are trying to evaluate a subgroup, those who produce antibodies to SFFV. These need to be compared with healthy controls who do not react to SFFV. They have already shown correlation with immune features. If they can show repeatable results of reaction to SFFV that correlates with an abnormal immune signature, then they can look for a drug to target this immune dysfunction/virus.

I agree that the paper is saying this may rule these out for Rituximab, sparing them the possible severe side effects of a drug that will not help them. It will also open the door for other treatments and possibly the first actual subgroup of ME patients.

 

[RustyJ]

I think the data from Dr Mikovits's group would go in with a lot of data from other groups that has so far not yet been found to be reliably reproducible. This is the big problem we have had in making use of any testing system to select or stratify patients for a trial. We need something that gives the same answer repeatedly. The extra difficulty with using antibodies to SFFV is that the data from Dr Goetze do not even come with a control group of antibody negative CFS patients or an indication of the proportion of CFS patients with a high titre, or indeed any indication as to what should be considered a cut off titre.

So I am very interested in any test like this, indeed, if it can be shown to be reproducibly different in ME/CFS and if it correlates with immune features, but so far this test does not qualify. We also have the apparent catch22 that if this test does indeed mark a subgroup with immunodeficiency then maybe they should not be included in a rituximab study (which maybe seemed to be the message in the paper). There does not seem to be anything about the findings that would suggest that this would be a good group to treat with rituximab, which specifically targets B cell related problems.

I agree with @liquid sky as it appears to be the main point of the Geotze discussion.

I find it disconcerting that, rather than discuss the possibilities raised by SFFV reactivity, commentators prefer to focus on perceived possible limitations of procedure (whether or whether not those limitations exist).

I have read the phrase "that has so far not yet been found to be reliably reproducible" all too often with respect to me/cfs studies and often as a way of dismissing the data. In this case I could safely say just the opposite, that such data has not been found to be unreproducible and it would be justifiably a truer statement (given that the findings were reproduced). Inevitably, promising findings are not followed up on, and such statements become self-fulfilling. Indeed, this is one of the points some posters are trying to make, that such findings should be followed up on, but are not.

According to Mikovits, the correlations have been picked up in multiple studies, a point she made in her response. The original Goetze study (being small) was perhaps the least of these. So I guess all that observers can say at this stage is that any reproduced data has not been sighted by them, not that it doesn't exist. And one of those studies was the largest to date on patients - the Lipkin study.

Also the same reactivity has been noted by the Singh research team, a matter they deem to be worth investigating further.

Most of the studies cited by Mikovits did indeed have controls. Lipkin's study did indeed stratify patients according to immune signature.

 

[Hip]

If CFS patients don't have a retrovirus (MRV or pathogenic HERV), then why would ARV's work? I read what is happening in MS with ARV's in an autoimmune disease using ARV's.
http://www.medpagetoday.com/Neurology/MultipleSclerosis/44861

The antiretroviral drug raltegravir (Isentress) used in that MS study may be effective against the entire range of herpes family viruses (ref: here). So its benefits may be nothing to do with its antiretroviral action. MS is quite strongly associated with Epstein-Barr virus, and HHV-6.

Dr Jamie Deckoff-Jones and her daughter used raltegravir in their experiments with antiretrovirals and saw improvements in their ME/CFS. Again, it may have nothing to do with the antiretroviral action of that drug, and more to do with possible anti-herpes family virus effects.

 

[Ecoclimber]

I agree with @liquid sky as it appears to be the main point of the Geotze discussion.

I find it disconcerting that, rather than discuss the possibilities raised by SFFV reactivity, commentators prefer to focus on perceived possible limitations of procedure (whether or whether not those limitations exist).

I have read the phrase "that has so far not yet been found to be reliably reproducible" all too often with respect to me/cfs studies and often as a way of dismissing the data. In this case I could safely say just the opposite, that such data has not been found to be unreproducible and it would be justifiably a truer statement (given that the findings were reproduced). Inevitably, promising findings are not followed up on, and such statements become self-fulfilling. Indeed, this is one of the points some posters are trying to make, that such findings should be followed up on, but are not.

According to Mikovits, the correlations have been picked up in multiple studies, a point she made in her response. The original Goetze study (being small) was perhaps the least of these. So I guess all that observers can say at this stage is that any reproduced data has not been sighted by them, not that it doesn't exist. And one of those studies was the largest to date on patients - the Lipkin study.

Also the same reactivity has been noted by the Singh research team, a matter they deem to be worth investigating further.

Most of the studies cited by Mikovits did indeed have controls. Lipkin's study did indeed stratify patients according to immune signature.

It seems we've been down this road before "‘Im just gonna not tell anybody Im activating all these ERVs with epigenetic modifying reagents and tell everyone my antibody is reacting to ‘XMRV'”

The reality concerning the impact that this 'paper' will create within the scientific community with regards to ME/CFS research will be negligible. Mainstream scientists will not even bother reading such a flawed research paper by a discredited scientist in a book promoted by dubious third tier publisher. Deckoff-Jones and 'Gerwyn Morris' have absolutely no retrovirology experience in this field of research.

When you have a scientist and their ilk that are groupies for the Age of Autism group, Wakefield, and the anti-vax group, the mainstream scientific community - the scientist that you really want to reach to actually research this illness - will turn a deaf ear.

Lipkin's paper has not been released to date so any definitive conclusion from it can not be substantiated. Lipkin, himself, stated that any retrovirus sequence found will not be related to CFS. Futhermore, none of the other viruses commonly associated with ME/CFS showed up in the first pathogen screen and the high throughput screening designed to look for any viruses including novel viruses drew a blank as well. He also dismissed earlier rumors that a novel infectious agent had been found.

It's sad that once again Mikovits is raising false hope within some of the ME/CFS community by her assertions, speculations and conjectures and not by adhering to sound research based on scientific methodology.

XMRV: The rats are trying to climb out of the sewer

http://scienceblogs.com/erv/2014/03/21/xmrv-the-rats-are-trying-to-climb-out-of-the-sewer/