XMRV and CFS - the sad end of a story

[caledonia]

JPV - it's not over until the fat lady sings - ie the Lipkin study results Dec. 2011.

 

[eric_s]

A quote from Van der Meer: "If patients start saying: I don't want therapy, because I have a virus, that will damage their chances of improvement."
(a bit brain fogged today: the translation is not fully accurate, this is the Dutch quote: "Als patinten straks zeggen: ik wil geen therapie, want het is een virus, dan haalt dat de genezingskansen onderuit, [Van der Meer said in the Dutch newspaper De Volkskrant]).

Repeat after me: "I don't have a virus, I don't have a virus, I don't have a virus..."
Maybe it helps!

It's insanity. One could wonder if those people have ever read any studies. What about the fact that CFS often develops after an ifection with EBV, Q-Fever, etc.?

They equal therapy with CBT/GET in their sentence. I have not heard anyone say: "Oh, now that they have found it's a virus, i will never want any therapy for that" . If that was the case they wouldn't have to be so worried about people looking for ARVs... Why doesn't he say: "If people believe they have a virus they will not want CBT/GET anymore"? Because then everybody who reads the article would wake up and think: "Yes, of course, how could you ever give those people that, are you crazy?"

 

[Bob]

Mikovits is apparently a con artist, incompetent... or both.

Why do you single out Judy Mikovits for that accusation?

What about Harvey Alter, Lo, the Ruscettis, Lombardi, Hanson, Dr Singh, Silverman etc. etc. etc.

Are they all con artists as well?

 

[Bob]

It's insanity. One could wonder if those people have ever read any studies. What about the fact that CFS often develops after an ifection with EBV, Q-Fever, etc.?

They equal therapy with CBT/GET in their sentence. I have not heard anyone say: "Oh, now that they have found it's a virus, i will never want any therapy for that" . If that was the case they wouldn't have to be so worried about people looking for ARVs... Why doesn't he say: "If people believe they have a virus they will not want CBT/GET anymore"? Because then everybody who reads the article would wake up and think: "Yes, of course, how could you ever give those people that, are you crazy?"

The PACE Trial proved that CBT and GET helped only 15% of participants.

Participants improved, on average, by about 10% on the fatigue and physical function scales used as the two primary outcome measurements to assess the participants in the trial.

After a year of practising either CBT or GET, participants were able to walk about half as fast as elderly healthy patients, in a six minute walking test.

CBT failed to make a significant difference to participants on one of the two primary outcome measurements used in the PACE Trial, and it made no difference to how far patients could walk in the only objective test, a 6 minute walking distance test, after a whole year of practise.

So at best, CBT and GET can be described as tools that a minority of patients might find minimally helpful to help them cope with a chronic illness.

At worst, when administered outside a multi-million dollar, carefully scrutinised and controlled trial, CBT and GET both cause many patients to relapse, as the Action for ME patient survey highlighted.

Michael Sharpe, one of the authors of the PACE Trial, said:
"We have a number needed to treat; I think it's about seven to get a clinically important treatment benefit with CBT and GET. What this trial isn't able to answer is how much better are these treatments than really not having very much treatment at all."
http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm#transcript

 

[Enid]

Oh so 15% aided - yep a bit of personal increased ability to make the bathroom might fall into that category too. Come on they are barking up the wrong tree.

 

[Jemal]

Jos van der Meer also talked to a Dutch newspaper. This article is in Dutch:
http://zorg.vkbanen.nl/banen/artikel/Hoop-cvs-patient-verdampt-in-laboratorium/490685.html

Some quotes I translated:

That virus is an artifact from the laboratory and that's actually the hardest proof that this case isn't right. XMRV has turned out to have originated from an event in the nineties, when a human prostate cancer cell line was injected in mice and cultivated. The cancer cells were later removed, but in the meantime a recombined mouse virus penetrated the cancer cells. That cell line was then used in many laboratoria. The blood samples of the CFS patients have been laying in the freezer for years. The contamination must have taken place before they were stored, because in the control group hardly anything was found.

Hardly anything in the control group is not nothing though?

The American virologist Harvey Alter did indeed find mouse viruses in CFS patients last year, but they were totally different from the original study. Curiously, proponents of the XMRV theory saw that as a victory, while of course it created more confusion. That study was probably also dealing with contamination.

Let's bash Lo/Alter as well!

He's also saying that he is not glad that he has been proven right (when asked this direct question it by a reporter), because XMRV gave patients a lot of hope. That's why they called their comment "the sad end to a story". Somehow he sure sounds smug in this article though.

Not once it is mentioned in this article that Van der Meer is a great promoter of CBT, which has proven not to work for real ME/CFS patients. Or that they have been advising the Dutch government not to pursue the cause of ME/CFS, because it's not likely one cause can be find. So better let it rest and let us rot.

 

[eric_s]

I don't think it's even worth reading what those people say. Of course, if they're in your own country it's probably a different thing. It's funny he finds it "curious" people saw the Alter/Lo findings as a victory. After all it was only Dr. Alter saying himself that the findings are "highly confirmatory" of the WPI's. But hey... not so important...

 

[justinreilly]

Hey Jemal,

Why can't you shut those bozo's up? Her in Belgium, our Van Der Meer, prof. Van Houdenhove, is scared s*tless. Last time he wanted to make a public statement on TV there was a petition with over 5000 signatures given to the VRT, and as a result, the interview was canceled. We don't need bozo's like that telling us how great CBT and GET are, and how many succeses they have booked with this therapy. Last week, the university of Leuven, where Van Houdenhove resides, invited all the Belgian TV stations to make a statement about xmrv, and CVS. A patients advocate group, active on facebook called WUCB(wake-up call beweging), responded to this announcement by sending a mail to all the stations explaining the current status of the XMRV research, including the list with differences in methodology in detection from the WPI. As a result, no TV stations turned up for this press conference. Maybe it's time that Holland starts a patients advocate group of their own to keep these things from happening. It's about time these people shut up after a few decades of torturing people, and this group is really doing a fantastic job at it. Maybe the hollanders can join this group, since there will be no language issues, and the more we are, the stronger we stand. You can check ou their site at http://www.wakeupcallbeweging.be/

And here's the direct link concerning the press conference : http://www.wakeupcallbeweging.be/index.php?page=4-06-11-interventie-persconferentie-kul

Regards,
K

K, wow! this is heartening to hear! Can you give me some insight as to how WUCB was able to get this level of patient involvement? I think there could be very valuable lessons here for other orgs and advocates to follow. Thanks!

 

[Snow Leopard]

What about Harvey Alter, Lo, the Ruscettis, Lombardi, Hanson, Dr Singh, Silverman etc. etc. etc.

Mikovits is not a "con" artist as she is not deliberately misleading anyone. However she is unnecessarily outspoken and makes a lot of unfounded statements that the above scientists do not.
I hope she will be able to maintain some dignity when the Lipkin/BWG results finally arrive (I am now an XMRV skeptic).

As for Jos W M van der Meer... I'm not at all interested in what he has to say.

 

[insearchof]

Mikovits is not a "con" artist as she is not deliberately misleading anyone. However she is unnecessarily outspoken and makes a lot of unfounded statements that the above scientists do not.
I hope she will be able to maintain some dignity when the Lipkin/BWG results finally arrive (I am now an XMRV skeptic).

As for Jos W M van der Meer... I'm not at all interested in what he has to say.

Makes a lot of unfounded statements....that other scientists do not....

I guess all those long reaching statements by a few key authors of negative studies, made to the press and circulated across the globe, which were not consistent with the findings in their own research papers where not unfounded.

Would not a very relevant omission that their studies were not true replication studies of the original lombardi paper, allowing them to contend that XMRV cannot be found in PWCFS, also amount to unfounded statements?

"Unnecessarily" outspoken in these circumstances....really?

There is nothing undignified in speaking up about erroneous or potentially misleading material when the health and well being of millions are involved. A dignified silence in such circumstances would surely be immoral

I think the point needs to be made however, that a distinction exists between a confident, exuberant and passionate personality (probably quite rare in the stuffy controlled world of science) on the one hand, (which Judy comes across to me as ) and acting in an undignified way (which I have never seen Judy do).

 

[Snow Leopard]

When she starts claiming links between autism and XMRV without any published evidence, I consider that to be unfounded.

 

[Ernie]

Yes I guess it's a big coincidence that ME/CFS patients have kids with autism.

 

[dannybex]

Yes I guess it's a big coincidence that ME/CFS patients have kids with autism.

There certainly may be a retrovirus involved, but there's also a lot of research that shows genetic mutations that are very similar in ME/CFS, autism, and autism-spectrum disorders.

If you're interested, there's a lot of information posted in the methylation section of the forums.

 

[markmc20001]

Will a retrovirus cause genetic mutations? It integrates into the DNA.

 

[Navid]

Mikovits is not a "con" artist as she is not deliberately misleading anyone. However she is unnecessarily outspoken and makes a lot of unfounded statements that the above scientists do not.
I hope she will be able to maintain some dignity when the Lipkin/BWG results finally arrive (I am now an XMRV skeptic).

As for Jos W M van der Meer... I'm not at all interested in what he has to say.

read emperor of all maladies...about cancer history: research and treatment.....any and all gains in that field have been made by big, assertive personalities making big statements and taking big risks. Dr. Judy is just following in the footsteps of many great scientists.....she is being targeted because she is an assertive, smart woman and has broken open a new world in science research....the old boys network don't like it and are trying to shut her up through this bombardment of contamination studies and claims against her that she is unprofessional....or claims like yours that she is a con artist...give me a break she is a renowned scientist who worked at the NCI for over 20 years...she didn't just fall off the pumpkin truck or come from the carnival. your statement is demeaning and rude!!!!


change comes when assertive people come up with great ideas and work their asses ff to prove them. read the book you will see....this is how the worlds of science and medicine work....science doesn't happen like a polite tea party....it's a loud, conflicted, aggressive process.

i'm thankful for Dr. Judy and the noise she is making about me/cfs. this disease has not had a BIG personality to lead the fight toward a cure...now we have one....so perhaps someday there will be a cure or at least treatment.

 

[insearchof]

When she starts claiming links between autism and XMRV without any published evidence, I consider that to be unfounded.

Oh you mean like Coffin did at the SoK conference - talking about his positional view on XMRV before his research was published? Or perhaps the hundreds of thousands of scientists that do that regularly by way of poster presentations and talks at conferences.....who's works are in the process of publication....?

 

[Jemal]

Will a retrovirus cause genetic mutations? It integrates into the DNA.

This is a good question. Another retrovirus like HIV doesn't seem to do this though or at least it isn't linked to birth defects (I was asking myself the same question a few weeks ago, because one of my sons was born with a sixth toe).

 

[acer2000]

This is a good question. Another retrovirus like HIV doesn't seem to do this though or at least it isn't linked to birth defects (I was asking myself the same question a few weeks ago, because one of my sons was born with a sixth toe).

No but untreated congenital HIV in children causes a neurological syndrome pretty similar to autism.

 

[alex3619]

My hero, Dr. Barry Marshall, was vilified, criticized and attacked at length by the medical profession for daring to suggest stomach ulcers were caused by bacteria. At one point he was about to be struck off the medical register, or so I hear. He then proved he was right. He finally won a Nobel prize.

I don't know if Judy is on the same path. I know Judy and the WPI might be the on that path. The science will tell us, we just have to wait, but we have been waiting a very long time, in my case nearly all my life. In the meantime we can support XMRV research, including the WPI, until we have our answer. If its negative, we move on to support other ME/CFS research. If its positive, there are three possibilities. XMRV may be causal, or it may be co-causal. The last possibility is that we get XMRV because of an immune defect that is already there, and in turn this may be the "real" ME/CFS. We wont know which result is right until the research is done.

Personally, I think that there is maybe (guesstimate, based on my personal understanding) a 50% chance XMRV is causal, 30% co-causal, and 10% opportunistic. That leaves 10% it is not associated. These numbers go up and down with the research. Eventually only two figures will be left - 100% (99.99%) and 0% (0.01%). We wait to see which option gets what value.

Bye,
Alex

 

[Bob]

I know it's all subjective, but it baffles me how ME patients can be negative about Judy Mikovits.
She is following her evidence, as every good scientist should.
She is passionately following a line of research which is important to her, and her statements are based on her evidence.
Judy is being highly vocal in order to attract wider investigation and funding for XMRV, in which she has been extraordinarily successful.
From my perspective, that's a good thing.

Whether or not XMRV comes to anything - and we've got a long way to go to find out yet - I believe that the WPI have helped to transform the world of ME/CFS over the past year or two.
I've only been ill for 8 years, so I don't have a wide historical perspective, but I've seen everything change since the Science paper was published.
Our illness now has a much higher profile than it did a couple of years ago, and some of the most prominent scientists in the world are now talking about it, and even investigating it, such as Alter and Lipkin.

When we look at some other prominent scientists like Wessely, White and Chalder, there's absolutely no comparison, in terms of what Judy is doing for the ME community, and her motivation.
Personally, I just can't see anything to be negative about, in terms of the WPI.
I consider Judy Mikovits to be a friend to ME patients, and I honestly don't understand how she could be seen in any other way.

Just my opinion.