Dr Mikovits excellent reply to Science Journal Request for Retraction of XMRV paper

[eric_s]

Eric_s: I think your discussion might explain about 10% of what RedRuth said, but the other 90% is still out there.

And I think your comparison with football team illustrates the exact problem. In football, all teams are the same. You root for one, but it is really no different than another. Claiming Milan AC is better than Chelsea is being a fan. But science should be completely different. Science should be based on who is right; who has the stronger data. The fact that you would even compare a scientific controversy to a football team shows the problem.

I was thinking about this issue, because of this thread over at ME/CFS Forums:
http://www.mecfsforums.com/index.php/topic,7436.0.html
Another negative paper coming soon - be aware

That thread is sort of a basic test of people's attitudes. The paper had not come out, so people knew nothing about it -- nothing at all -- except that it was negative. Look at what people said and how they said it.

You mark my words: No scientist, who is not already studying ME/CFS, will start studying ME/CFS, after reading a thread like that.
It is a bright sign that the people who participate in that forum are anti-science. That they hate the basic idea of trying to figure out what is going on by studying something. That the ME/CFS community wants "science" that supports them, and the truth doesn't matter one wit. In that thread there is not the slightest consideration for what is true or not, for what the data supports or doesn't support.

Note: I'm not THAT Levy. My first name is not Jay. I'm not a doctor. I don't research CFS or XMRV myself.

Joshua Levy

Joshua, you have to be aware that ME/CFS Forums is a special place. People there are not anti science at all, but they have a very strong opinion about what the situation is like and don't like people attacking that point of view. I prefer the atmosphere and culture of this forum here, even though there are pros and cons everywhere.

Science should be different, as you said, but is it? I think that's exactly the problem. It looks more and more as if it's not at all a non-personal search for the truth, it's a power struggle, in the case of HGRV. I don't know the motives of the different players, but i can see that it's a fight. Look at the authors of the Levy study. Peterson and the Wisconsin institute seem to have personal issues with the WPI. Then there's the other paper by Coffin. We all know the things he said and did, "leave XMRV behind" etc. And then you have Ruscetti, who probably would beg to differ and who works for the same NCI as Coffin. And on the day of publication, the NCI says on their website XMRV in ME/CFS stems from contamination. And Alter said his sequences can't be explained by Coffin's hypothesis. This is a fight, and we should be aware of it. Because it matters when we try to think about what we should do and who our friends are. If we are naive, it might be dangerous. We should not be paranoid, but not naive either.

We have never in history had our fair share of attention as far as science is concerned. What we get in terms of funding is peanuts, compared to other groups. If there then is a group like the WPI, whos mission it is to help us and they report having potentially found a treatable cause for ME/CFS i think it's normal people to some degree become their fans. But i agree, we should not forget to stay objective, nevertheless.

And my picture of the football fans was actually not about comparing the scientific process with a football game. Maybe i was not very clear. What i wanted to say is that you have people who are, understanably, very much emotionally involved. XMRV could make all the difference for us. Now we have gotten a beating and it looks to a good part unjust. In such a moment one has to be aware of the feelings of people and should be careful what one says and how one acts on an ME/CFS board. I'm all for objectivity, but this is a ME/CFS board and not a general science board. I'd love to have more scientists here, but i think on a ME/CFS board you should respect the feelings of people with ME/CFS.

 

[WillowJ]

the other thing people should realize when coming here in a week like this, is that different points are made when discussing:

A) the general merits of the case of XMRV/MLVs/HGRVs

than when discussing

B) the reason why the Lombardi paper should not be retracted and why study of XMRV/MLVs/HGRVs should not be abandoned now

Those are very different topics, and to use discussion of (B) to inform yourself about a population's view of (A) is misleading

 

[Angela Kennedy]

There are two more important factors: lack of money for research and this disease is currently so poorly defined people still can't even articulate what it is and who has it.

Those two factors are the biggies. The mean, recalcitrant patient refrain beloved by, for example, Simon Wessely (the latest as we've just seen in Nature) and swallowed a little too uncritically by Joshua here, is irrelevant. Joshua, calling people anti-science for critically engaging with claims to scientific authority is a common and depressing ad hominem this community faces on a regular basis. You are not the first person to make what are actually rather fatuous comments like the ones below:

You mark my words: No scientist, who is not already studying ME/CFS, will start studying ME/CFS, after reading a thread like that.

It is a bright sign that the people who participate in that forum are anti-science. That they hate the basic idea of trying to figure out what is going on by studying something. That the ME/CFS community wants "science" that supports them, and the truth doesn't matter one wit. In that thread there is not the slightest consideration for what is true or not, for what the data supports or doesn't support.

You have completely misrepresented that thread and the concerns of some very sophisticated observers of what Khaly Castle has called the 'three-ringed circus' of XMRV 'science'. It might be you are just ignorant of the complexity of this subject, and have inappropriately generalised after fixating on a few comments you disagreed with. To call people 'anti-science' on the basis of a few comments on that thread is wholly inaccurate. To make your 'mark my words' claim is just silly- you're not some seasoned observer of similar science and communities to be able to make that prediction- because the situation facing the ME/CFS community has no real precedence elsewhere, and where there are similarities (AIDS, for example) patient bolshiness worked!

This might be fervent ignorance of the complexities of the situation facing the community (the constant attacks on their integrity, the psychogenic dismissal and its material and social effects, the bad science inherent in psychogenic explanations given authority by government, the current bad science inherent in the claims that XMRV is a dead duck and should not be allowed to play out the way other scientific questions are, based on badly done 'negative' studies and unwise 'nothing to see here' comments), OR, you are deliberately trying to demoralise people, or strawman the ME/CFS forums members. It would not be the first time this was attempted.

If it's the first, you really do need to wise up, because your current position is untenable in the face of the evidence. You might have been reading too much of ERV and the Bad science forums, and therefore have a narrow view of what's going on (too narrow).

 

[wingfingers]

As a "scientist" (retired vet) and keen to study all microbes, I have grown Mycoplasma in the lab and wrote my Masters thesis on the subject. The WPI studies on XMRV appear to be genuine with no fraud. So why all the negativity? There are obviously many anti-XMRV vested interests involved to muddy the waters. Just ignore all the non-replication, cheap & nasty, quick & dirty, negative studies. Mikovits and her crew spent 8 months tweaking their techniques, honing & polishing them, and this is a work still in progress. They still won't commit themselves to claiming that XMRV is the cause of ME, as there are some more hurdles before Koch's Postulates can be proven. But what else can it be? Given that the cause of ME has been known to be a retrovirus for the past 25 years.

 

[wingfingers]

Publishing an "expression of concern" by "Science" has simply thrown egg all over its own face. The original paper by Lombardi et al was very carefully vetted by Science, who insisted on extra work to prove lack of contamination. No fraud was involved. So WHY the request for retraction? We have all known that ME(CFS) is caused by a retrovirus since about 1985 when Dr Paul Cheney showed MRI scans to a specialist who in return showed him scans from AIDS patients - they showed the same lesions. Then Elaine DeFreitas found a retrovirus in her ME patients in about 1991; her work was suppressed when the CDC couldn't duplicate it (using different methods). The WPI team may well have the right answer. So exactly WHY does this huge anti-XMRV movement exist? Surely true scientists would be looking to find the real facts, and not trying to stymie the work in progress? The non-replication negative papers are worthless and the suggestion that XMRV could be either a contaminant OR a new virus generated in the lab, is simply speculation, no more. Science editor Mr Alberts does himself no favours in presenting his "expression of concern", which is so premature as to question his integrity as a scientist, and implies that he has been "leant on" from above.

 

[eric_s]

Good to hear from someone who has an idea, thanks. What i always find hard to make sense of is that Elaine DeFreitas reported finding another type of retrovirus (no gammaretrovirus). So i guess that was not the same that we are looking at now. I never know what to make of her story.

 

[Bob]

You know I'm staggered by how rude and aggressive some of you are. I'm not a troll and I'm not baiting anyone. Because I work in another field (molecular cell biology) I'm wary of commenting on a field I'm not expert in (retrovirology). I came here to get an understanding from this perspective after reading some science blogs and information on other forums. It hasn't been a very edifying experience.

I engaged with you very fairly and respectfully RedRuth, but you seemed more interested in your own agenda, rather than learning about the perspectives and experiences of CFS patients.
If you had seriously engaged with the patients in this forum, because you wanted to learn about our perspectives, then you would have encountered a lot of good will, and people would have given you a lot of time.

 

[Bob]

Mikovits arguments seems like a broken record at this point. All the evidence she has presented to try and prove she is not finding a contaminate in no way proves that; some in fact reinforces the idea that she is finding a contaminate. The sequences she published are essentially VP62.

H LJS,
Would you say that the WPI's newly published sequences are VP62?

Yes, take a look at the supporting online material for the science paper published today, it is VP62.
http://www.sciencemag.org/content/suppl/2011/05/31/science.1204963.DC1/1204963s.pdf

Thanks LJS.

I've just looked through that paper and there's absolutely no mention of the WPI's newly registered sequences at all.

Knox et al. only analyse the WPI's original sequences.

So everything that you have said, above, is incorrect and misleading, as far as I can tell.


Here are the newly published WPI gene sequences, and they are not mentioned in the recently published Science paper by Knox et al.:
http://forums.phoenixrising.me/showthread.php?11714-New-WPI-and-CDC-XMRV-sequences-in-genbank
The Knox paper is based on old knowledge, and so it is already out of date.

 

[Bob]

Further gene sequences added to genbank by the WPI:
http://forums.phoenixrising.me/show...ces-in-genbank&p=184788&viewfull=1#post184788

 

[eric_s]

Hi eric_s, this is a complex issue that many people have been thinking about, me included.

1. First, confusion. We are told there is nothing wrong with us. No, there is but its psychiatric. No, we don't have CFS, we have somatoform disorder. No, ME and and CFS are the same thing. No, its really physical but caused by dysfunctional psychology. No medical tests show anything so why bother? We need to exercise more - go out and be active: when this results in a crash they then go back to blaming us, or saying its all in our heads. The confusion sown by so many definitions, especially those that cannot differentiate between psychiatric disorders and ME or CFS, only adds to the confusion.

We frequently can't make sense of this mess. We have poor memory and severe brain fog. Thought takes energy too. Then when we go out to get info, so much is wrong. I have not been to the wikipedia in years, but when I was last there on CFS I thought it was mostly garbage. How do you get good information when so much of it is wrong, so much medical opinion is entrenched dogma and ignorance of this topic? When even our authorities fail us, when we can't get good information, it can cause confusion and demoralization.

2. Then there is the social stigma and disapproval. We are treated with hostility by bureaucrats, medical professionals, friends and even family. We are effectively ostracized, much like lepers who were ostracized for the last several millenia. I can understand why a public servant trying to enact laws or regulations would be frustrated by people who do not fit their rigid definitions. I cannot understand emotionally why doctors are so ignorant on this - even though I think I understand it intellectually.

3. We frequently lose our jobs, and cannot afford a computer or internet connection. In addition, many of us lose capacity to read. Given so many of us cannot go out, we are stuck at home, isolated, effectively treated like mushrooms. Our societies are very weak politically, in large part due to our being so very sick. Then we have doctors and public servants telling patients not to join a support group. We are cut off from good information, and fed bad information, and can't get out to interact with other patients or protest in any numbers. This is just as true for the moderately disabled as the severely disabled. If a patient is less sick they are probably trying to hold down a job. As soon as they get home, they most likely crash into bed. When do they find the energy to be involved in ME/CFS societies?

4. So many of us are in poor countries. However it has been pointed out by quite a number of people that the numbers of ME/CFS patients in Europe and North America are quite high.

How do we reach them when most are not on the net? How do we get them to participate when they are too sick to travel? How do we get them motivated when they are confused and demoralized? We have the numbers, but we are too sick to fight in our own defense, and the history so far has shown that only a very few who are not sick will fight for us.

I could probably write like his all day eric, but I suspect you already know all of this.

We need to find ways to reach people not on the net. Anyone net savvy is likely to wind up on one forum or another. The weak point is those who do not use the internet, although I worry about those in the UK and a few other European countries, or who go to wikipedia as the authority.

I wonder if a radio campaign or newspaper add campaign would work? But who would fund it? Would it make a difference? If they are not on the net and can't travel, they are dis-empowered anyway. Maybe a free newsletter to anyone who wants it? Maybe we should be advertising that in newspapers and on radios, at least in a pilot program in a few locations to see if it works? Making free brochures available at doctors offices might also work. Who knows? We need to try everything, and keep trying.

One other possibility has occurred to me. What would happen if a candidate for national senate (any country) were to stand up on a platform of supporting ME/CFS research or treatment? I suspect a candidate who stood for the fair treatment of "medically unexplained illness" would do better though. First of all, they could have as part of their platform that much has been explained about these illnesses, its just being ignored. Such a candidate would not even have to win to make a difference, though it would be better if they could. If such a candidate stood for all such illnesses, from IBS to fibro and MCS, what percentage of the population would back them? Would 5% of the voting public be enough for them to get office? I suspect that will vary country by country, and region by region.

So who would be a candidate? We need someone who is not sick, as they may have to fulfill the duties of their office, and if they get elected they will have a lot of advocacy to do - so a parent or sibling of a person with one of these illnesses would be necessary.

Bye
Alex

Hi Alex. Thanks again. I did not have time to go back to this post to read it before now, because i was really drowned with things i have to do in the last couple of days.

Of course i can't know how to overcome all of these problems, but i guess the way is to think about it, get to a best guess and then try. Adapt what you are doing, according to what seems to work best and keep doing it, always keep doing it. Not one person, but the community as a whole. I think every country is a situation on it's own and needs to find it's own recipe that works. But they should always be in contact and share their ideas and experiences. In Europe there is EMEA and i think that's the right approach, but i don't know how active they are. I think EMEA is a very important platform and the organisations represented there (i hope it will be all of them, sooner or later) should find a way to be in contact regularily and in an effective way.

To what you said in 1., i think ME/CFS organisations are key. If doctors and politicians/officials are often not well informed, the push can only come from our own organisations. The question is how to make these people (doctors, politicians, officials) listen and act. I think founding organisations for health care professionals with experience with ME/CFS, like Liga SFC in Catalonia did, is a very smart idea and should be copied on the national and probably also on the European level.

I think the same applies to 2. In a group we can find the strength to refuse that sort of treament, where it exists, and we have the power to demand change.

Regarding 3., if some doctors or officials really try to keep people away from groups that's a problem. I guess here also it must be the groups who have to reach out and try to get those people interested nevertheless. How to do that is of course not so easy to tell. I guess here again, each group must find the way that works in their country at that given time, but the more they talk to each other, the more i think they are likely to find a successful way.

Regarding poor countries, i guess we should focus on our part of the world (North America, Europe and Austraila/New Zealand). Not that the others don't matter, but i guess it has to be us who pull the cart out of the dirt and then the situation will improve for people in those countries as well. Probably it would be very difficult to reach them and they would not be able to do much. The rich people in those countries will probably donate to charities in richer countries anyway, so they have a way of participating. I think we have enough people and resources in our parts of the world, so we should focus here. And if we have success, it will be a success for everyone anywhere on the planet.

I think all in all, it's a matter of growing the organisations (more members, more funds), connecting them and making sure they have the right leadership (this will be up to the members to decide, but you can only vote if you actually are a member, so one more reason to join).