Article: The Times They Are a Changing - CAA Nominates Distinguished Researchers To F

You can view the page at http://www.forums.aboutmecfs.org/content.php?230-Distinguished-Researchers-Fill-Slate-for-CFSAC-Nominations-From-CAA-CFS

 

Yes, Dr. Mellors implied that during the Q&A after the XMRV conference. There is a thread discussing it. http://www.forums.aboutmecfs.org/sh...lors-Expert-in-Infecious-disease-amp-HIV-AIDS

That was in reference to a paper that came out suggesting that similar viruses to XMRV may be found in the glandular tissues of pigs - which could possibly be transmitted to humans using supplements. All that indicated was that the patient community basically wasn't up on the XMRV literature and that Dr. Mellors was!

 

Lovely post as always Cort - and we will get there.

 

I think we should be prepared that these are independent researchers and they may have some views that we do not agree with but that doesn't mean that they are not in our court. I think by agreeing to participate on this panel on this still very controversial disorder that indicates they ARE in our courts. I doubt many of them are going to get many brownie points from their peers for doing this.

If you look at MEllors publications you can see that he's part of a large team with ample resources - what is he going to say when he checks out the abysmal state of ME/CFS research and funding? I imagine that he's going to be a little shocked and ask for alot more funding...That is his job on this panel - not deciding whether XMRV is it or not.

What you are getting with Mellors is a highly experienced retrovirologist with a strong focus on anti-retrovirals. Here are some papers he's published just from the last six months. Already this year he's authored 14 papers, most of which are retroviruses. For all I know he's a cranky guy but he definitely has some clout.
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The effect of raltegravir intensification on low-level residual viremia in HIV-infected patients on antiretroviral therapy: a randomized controlled trial.



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Regardless of who is being nominated or what their credentials are, it is not unreasonable to ask the what the criteria are by which the selections will be made. There are inherent biases/preferences in any decision-making process, and this question helps to clarify what is important to the decision-maker.

 

Regardless of who is being nominated or what their credentials are, it is not unreasonable to ask the what the criteria are by which the selections will be made. There are inherent biases/preferences in any decision-making process, and this question helps to clarify what is important to the decision-maker.

I think that would be interesting to know. Why Dr. Peterson or Dr. Mikovits or even myself was not chosen I have no idea. I really wanted Dr. Peterson on there. We do know that the panel has included many prominent ME/CFS spokesman and researchers but how they choose who they choose I don't know. I assumed that I had posted too many controversial blogs. I certainly had the knowledge to serve as patient representative but they didn't choose me. Maybe they didn't want to pay for the cross-country plane trip

 

I think that would be interesting to know. Why Dr. Peterson or Dr. Mikovits or even myself was not chosen I have no idea. I really wanted Dr. Peterson on there. We do know that the panel has included many prominent ME/CFS spokesman and researchers but how they choose who they choose I don't know. I assumed that I had posted too many controversial blogs. I certainly had the knowledge to serve as patient representative but they didn't choose me. Maybe they didn't want to pay for the cross-country plane trip

As citizens, we have a right to ask.

 

XMRV Global Action would like to voice the following concerns about the CAA nominations:

Nominations for the CFSAC has been an important topic of conversation lately. The 11 members of the CFSAC are nominated by the public, selected by DHHS staff, and appointed by the Secretary for Health. Yesterday the CFIDS Association announced its nominees to fill these empty seats.

Two of these Nominations give cause for concern. Mojoey from the Phoenix Rising forum captured this concern when he said:
http://www.forums.aboutmecfs.org/sh...-CAA-Nominates-Distinguished-Researchers-To-F

Yes Bakercape, Mellors implied that (Didn't one of the CAA nominees imply that we could have gotten infected with MULV's from all the treatments we've tried.). I have no idea why he is being nominated.

DODD: "In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. "

Mellors comments from our transcript of the 1st International XMRV Workshop Q&A did bring up some good points:
1) I propose a simple way to add clarity. And that is the same patients to be tested by multiple laboratories. The blood working group has started this, but their primary concern is the safety of the blood supply. This leaves patients with the syndrome and healthy controls in the lurch. And I would propose that there be a collaborative group putting together patients with the syndrome and appropriate controls that are agreed (his emphasis) upon, and that a neutral party take those individuals, draw multiple samples from those, and store them as a repository to then be distributed to the laboratories that are part of the working group or additional ones. Unless we start testing the same patients with different methodologies, were not going to get anywhere. And I really want to emphasize that to resolve this discrepancy between 0% and 80%, we all have to be testing the same samples.

2) So this idea of assembling a group of patients, a cohort of pts with CFS as well as controls, and defining by standardized collection, by a neutral party, the prevalence of XMRV, and whether it can be or the other MLVs whether it can be quantified, goes a long step toward potentially identifying a pt group who could subsequently be enrolled in a clinical trial if theres something to measure related to the virus.

3) But I think that whats really important in this field Judy is for your findings to be validated independently so that there are a couple of sources that agree upon your findings so that theres not the underlying skepticism generated by 0% prevalence in people who are bedbound. (My note: this came across as a bit harsh, but after all Annette made the same point in her molecular journal paper, where she said something to the effect that one of the big lessons they learned is that others have to replicate their results too, so theyre not swimming against the current.

But I was really concerned about two things Mellors said:
1) Split the CFS and prostate patients. By recommending this, he is ASSUMING that this makes sense, when in fact we already have tremendous research synergy (Klein/Silverman/Singh), who is forging ahead in this field for both causes, and the learning they gain is helping both, and creating synergies. By following on his recommendation, this will ensure that discoveries the ME researchers make may not percolate to the prostate community, and vice versa. Let the science lead that decision and so far the science shows no indication that this split should be made. Especially as the recent musings on prostate cancer from XMRV are that it may not be directly oncogenic, but that it may cause a state of chronic inflammation (sound familiar to ME/CFS) that in turn causes the cancer.

2) CFS patients are getting viruses from irresponsible parenteral routes (i.e. were shooting up so many quasi-treatments from dubious alternative sources that no wonder were infected. A great blame-the-patient message if I ever heard one:

For instance you go on the internet and look at what types of therapies that individuals with CFS can acquire and thats in the public domain its frightening. And what is given to them behind closed doors in desperation it leads the imagination astray to wonder whats actually happening and could there be a completely different microepidemic being transferred parenterally with CFS that has absolutely nothing to do with acquisition of a retrovirus related to prostate cancer. So I really think we have to draw a line and not say the epidemiology is the same for both entities

Then again, maybe the CAA is thinking along the lines of keep your friends close and your enemies closer. I wouldnt go so far as to call these 2 individuals enemies, but they sure have said some things that should cause our community significant concern.

 

But these people are only one set of nominees.

The important point is that they accepted the nomination. This shows unequivocally that prominent researchers are willing to associate themselves with this now.

So far we haven't really been fighting a war of facts. If we were, then CFS would be acknowledged to be a physiological disease by now. We are fighting a war of new paradigms versus old, dogmatic safe views. The majority of 'scientists' simply wouldn't put their necks (or careers) on the line by going against the herd mentality.

Now we have some of the 'Alpha Sheep' coming over to graze in our pasture. That is exactly what we need to win this.

Not facts and good arguments. Just alpha sheep.

 

Ok. ALL points well made

Lipkin did do a study on ME/CFS and bornaviruses and he is now participating in two important studies. Its possible that even though he's believed a pathogen is involved he hasn't seen a pathogen he felt could account for CFS.

The question is in what kind of context do you want to place him and other prominent researchers that enter the field now? Is your glass going to be half empty or half full? Do you want to focus on what they haven't done (not many researchers have worked on CFS!) or do you want to applaud the fact that major researchers are finally stepping into the field, or, in this case, that one of the top pathogen detectives is now engaged in two studies on CFS?

Some of these people are definitely not jumping on the XMRV bandwagon and they have real questions about it and they are not alone. Read the latest article in Science - the field is described as being in a 'zone of chaos'. They may very well have some opinions that do not accord with ones you or I hold. They may bring even MORE questions and sharper questions than we've seen in the past but they are pathologists and infectious disease specialists - they are not CBT practitioners - and they clearly believe infections and pathogens play a key role in this disorder or they wouldn't be there.

Of course if they get selected they'll bring more heft to the Committee - something that's definitely needed. Do you think they going to vote against increased funding for ME/CFS? Or against funding Centers of Excellence? Their role is to help guide the govts response to CFS - to prod it to do the right thing. Whatever they think of XMRV they are certainly going to advocate for more funding into the pathophysiology of this disorder.

Yes you are correct Cort. We do need heavy-hitters on CFSAC. I just have that tiny worry in the back of my head that one or several of these people may well be dead-set against any thoughts of viral implication or that CFS is real, etc. That tiny worry is always there.

And we really do not know for sure if this virus or virus family does in fact cause CFS. I believe it does, or at least plays some sort of role, but being certain about this - I am not. However they do need to push for massive funding to find out what this family of viruses is all about. I hope that the roster you have is loaded with people who just want the answers and know that funding to get more research in the many areas is the only way to know.

My suspicions of the Federal government and their real motives are just too strong. The games that the CDC played on us with assistance from the other Federal health orgs, and others, has burned that suspicion into my brain. Maybe things have changed. Maybe getting the real heavy-hitter researchers on CFSAC will push us forward.

Good points. Thanks for pulling me back a bit from my ULTRA suspicious mode I have lived in for so long.

Though I do think that we, the sick, do have a right to know how the CFSAC process works. Obama said we needed to have transparency in our government and I fervently agree. So asking CFSAC how they make decisions on WHO gets to be a member is still quite valid.

 

So

That was in reference to a paper that came out suggesting that similar viruses to XMRV may be found in the glandular tissues of pigs - which could possibly be transmitted to humans using supplements. All that indicated was that the patient community basically wasn't up on the XMRV literature and that Dr. Mellors was!

Mellor thinks it's possible 86% got these viruses from supplements dirived from pigs? And the controls how does he think they got them in there system? Don't regular people take supplements too?

It still seems like a comment aimed at distraction rather than reality.

I will say having scientist with clout is great. Having increased funding would be awesome.

But we better make darn sure we know where all these people stand on the issues or we may not be happy in what direction or studies these increased resources would be used for.

We don't want more of the same but on a much larger scale. That would be like pouring gasoline on a fire we're trying to put out.

If we want a big change in direction we better make sure that's what the people we nominate want it too.
It's like voting for a politician. You can't just listen to what they say you have to look at there past history of action( inactions) to gauge them.

I also agee that there needs to be a treating physician on the commitee. Or preferably more than one. We need people that understand our suffering up close and personal. Not just from a cold scientific distance.

Cort why not shoot for the stars and have the glass all the way full. That way we don't have to judge the glass either way.

 

That begs the question

"The Committee shall consist of eleven members, including the Chair, who are appointed by the Secretary or the Secretary's designee. Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS. All members of this Committee are classified as special Government employees (SGEs) and are subject to government ethics rules."

Why seven with funky biomedical expertise? Does the Four with expertise in health care delivery...mean physicians who treat?

Why not six treating physicians, the ones that treat at least on average 5 CFS/ME patients a week - those doctors in the trenches treating us, listening and learning from us, and have far more understanding of what ALL is wrong with us than the biomedical (stuck in the labs) types? Maybe having real doctors who treat us sick would be too dangerous and what they say would become public and no, we can not have that.

Am I missing something or getting mixed up here?

 

I know that comment by Mellors seems odd but I really do think we should do a bit more digging before we decide that a highly published retrovirologist who is the head of an Infectious Diseases dept (I think it is) at a major University is an idiot

Here's the abstract of the article that I assume he was referring to:

XMRV (xenotropic murine leukaemia virus-related virus) is a gammaretrovirus that has been detected in human patients with prostate carcinoma, chronic fatigue syndrome (CFS) and also in a small percentage of clinically healthy individuals. It is not yet clear whether the distribution of this virus is primarily limited to the USA or whether it is causally associated with human disease. If future investigations confirm a broad distribution of XMRV and its association with disease, this would have an impact on xenotransplantation of porcine tissues and organs. Xenotransplantation is currently being developed to compensate for the increasing shortage of human material for the treatment of tissue and organ failure but could result in the transmission of porcine pathogens. Maintenance of pathogen-free donor animals will dramatically reduce this risk, but some of the porcine endogenous retroviruses (PERVs) found in the genome of all pigs, can produce infectious virus and infect cultured human cells. PERVs are closely related to XMRV so it is critical to develop tests that discriminate between them. Since recombination can occur between viruses, and recombinants can exhibit synergism, recipients should be tested for XMRV before xenotransplantation.

 

Kati- 1) Split the CFS and prostate patients. By recommending this, he is ASSUMING that this makes sense, when in fact we already have tremendous research synergy (Klein/Silverman/Singh), who is forging ahead in this field for both causes, and the learning they gain is helping both, and creating synergies. By following on his recommendation, this will ensure that discoveries the ME researchers make may not percolate to the prostate community, and vice versa. Let the science lead that decision – and so far the science shows no indication that this split should be made. Especially as the recent musings on prostate cancer from XMRV are that it may not be directly oncogenic, but that it may cause a state of chronic inflammation (sound familiar to ME/CFS) that in turn causes the cancer.

He didn't say split the prostate cancer and CFS researchers he said split the patients - which completely makes sense to me. That is, after all, what Dr. Mikovits has been saying for months - that XMRV in the prostate cancer patients is different from the XMRV in the CFS patients - and that discrepancy in the study comes from researchers using prostate cancer XMRV probes to look for XMRV in the blood of ME/CFS patients. (Remember the APOBEC3 editing enzyme in immune cells in the blood but not in prostate cancer cells?)

So yes, definitely split the patients up and don't act like you're studying the same virus in both groups.

 

2) CFS patients are getting viruses from irresponsible “parenteral” routes (i.e. we’re shooting up so many quasi-treatments from dubious alternative sources that no wonder we’re infected”. A great “blame-the-patient” message if I ever heard one:

'Blame the patient'? I didn't get that at all - blame the patient for trying to get well? For using alternative untested sources because no one is doing treatment trials? Because there are no good treatments?

In my view that's illustrating how little help we get from the medical profession - that's demonstrating how much more funding we desperately need.

 

Then again, maybe the CAA is thinking along the lines of “keep your friends close and your enemies closer”. I wouldn’t go so far as to call these 2 individuals enemies, but they sure have said some things that should cause our community significant concern.

Enemies....that's a powerful word! Mellor is an enemy now......jeez.

He's stepping right into the public - committing himself publically on a very controversial disorder. By coming on this committee he's making a very public statement that this disease is real and that it's tied to pathogens....I imagine he had to think long and hard about it....and I imagine some of his peers think he's crazy.... and he's already an enemy!

Welcome to CFS Dr. Mellors This may not be your usual stay committee assignment

He obviously has questions about XMRV and my opinion of him veered as I watched the Q&A - he's, obviously not the warm cuddly type - he may never be beloved or even liked (or maybe he will) but we don't know much yet about him yet.

 

Muffin- My suspicions of the Federal government and their real motives are just too strong. The games that the CDC played on us with assistance from the other Federal health orgs, and others, has burned that suspicion into my brain. Maybe things have changed. Maybe getting the real heavy-hitter researchers on CFSAC will push us forward.

Thanks. I think your feelings and suspicions are only natural! What I hope is that the XMRV finding has propelled into a transition period where we are going from being scorned to being a source of real interest. If this is true then we will have to find a way to adjust our default stance (mistrust) towards the research community. That may not be easy adjustment.

I, for one, really want someone in the federal government to pay for the years of neglect that have been shown to CFS patients. If XMRV and related research takes off would it be best to declare a moratorium? let them slide or try to expose all the guilty parties?

Hopefully dropping our guard a bit because we're dealing with a research community that wants to get involved is a problem that we will have to face. We shall see.

 

By the way - last year the CAA nominated Dr. Mikovits, Dr. Peterson and Dr. Donnica...the whole WPI slate. (I have no idea why none of them were selected)

I found out that federal employees like Dr. Ruscetti, Dr. Lo and Dr. Alter are not eligible to serve on advisory committees.

The CAA is trying to pack the CFSAC with retrovirologists - I think that's a pretty timely move by them.

Every group, even Phoenix Rising, lby the way, can nominate individuals I believe.

 

DO you

By the way - last year the CAA nominated Dr. Mikovits, Dr. Peterson and Dr. Donnica...the whole WPI slate. (I have no idea why none of them were selected)

I found out that federal employees like Dr. Ruscetti, Dr. Lo and Dr. Alter are not eligible to serve on advisory committees.

The CAA is trying to pack the CFSAC with retrovirologists - I think that's a pretty timely move by them.

Every group, even Phoenix Rising, can nominate individuals.

Have to be a group to nominate someone or can individual patients nominate someone?

I really do worry about not having some treating physicians on the committee. I think it would strike a nice balance if there were at least a couple nominated and voted on. Are there any out there left? I wouldn't want a bunch of academics with no empathy for our suffering.

I can only speak for myself but I don't feel Mellors is an idiot. Obviously he is extremely intelligent in many ways. But at the same time I feel his comment shows a real disconnect from the task which we should be following which is pinning down the test for Mulv's in human beings and looking at the pathogenis in patients. If he thinks we need to look at Kutapressin or some treatment like that contaminating cfs patients as some kind of high priority of research I would worry where he would spend any new funding.

 

Have to be a group to nominate someone or can individual patients nominate someone?

I really do worry about not having some treating physicians on the committee. I think it would strike a nice balance if there were at least a couple nominated and voted on. Are there any out there left? I wouldn't want a bunch of academics with no empathy for our suffering.

I can only speak for myself but I don't feel Mellors is an idiot. Obviously he is extremely intelligent in many ways. But at the same time I feel his comment shows a real disconnect from the task which we should be following which is pinning down the test for Mulv's in human beings and looking at the pathogenis in patients. If he thinks we need to look at Kutapressin or some treatment like that contaminating cfs patients as some kind of high priority of research I would worry where he would spend any new funding.

We'll just have to see how he works out if he gets in. I imagine that most of these guys are really quite conservative. I would be surprised if they are really tuned into the treatment aspects of ME/CFS. (At least Mellors has looked ). But he could be a heavy hitter at the federal level - and that is what we need there. The committee deals in broad strokes - such as funding and pushing the govt to implement programs not the details, so to speak. He is used to ample funding and I assume he would expect the same for CFS and push for it.

 

Ok, what activism mode do we go into, mellors and dodd sound concerning if not a few of the others

If patients cause an uproar over people who may actually turn out very good. We could end up with ones which are very bad. Im very happy to have anyone highly interested in Virology on that panel!!

Im happy if i dont see the likes of Wessely, McClure or Reeves!!

Maybe instead of critizing ones which have been nominated... us as a patient group would do better by making our voices loud about who we'd love to have. Maybe we could advocate as a patient group that we dont want any psychologists or psychriastists choosen for that panel!! Maybe it is that we should be focusing on.

Too many people complaining about good viralology researchers... we could end up with a panel of psychriastists instead.

We do thou NEED some highy respected names which others out of the CFS/ME scene highly respect.

I myself would like to push to have at Mikovits (but we also need other high hitters too which most researchers highly respect).
.........

If these researchers were the cake, Dr. Ian Lipkin was the icing on it. Dr. Vernon told me he's believed ME/CFS was caused by a pathogen since he treated people with CFS in the mid-1980's in San Francisco

That is good to hear.. hearing that makes me feel a lot better

I wouldnt care if this panel ended up changing biased out there from psychriastrists to instead having a strong viralogy biased even if the XMRV thing didnt work out.. at least then we'd get funding in this infectious viral area.