XMRV and CFS - the sad end of a story

[Jemal]

In a Comment published Online First by The Lancet, Dr Frank J M van Kuppeveld and Professor Jos W M van der Meer (Radboud University Nijmegen Medical Centre, Netherlands), discuss the recent events which they say have closed the door on the possibility of xenotropic murine leukaemia virus (MLV)-related virus (XMRV) having any role in chronic fatigue syndrome.

http://www.medicalnewstoday.com/releases/229029.php
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60899-4/fulltext?rss=yes

 

[JPV]

Whats so sad about not having a virus that won't likely be cured within our lifetimes... if ever? Personally I think this is great news.

I think so much focus has been put on XMRV because it allows some form of validation against the naysayers that are so quick to tell us that it's all in our heads. I'm far more concerned with getting healthy than I am with validation. I could care less what others think.

Mikovits is apparently a con artist, incompetent... or both. I'm hoping that people are finally ready to give up on this obviously failed research attempt and start focusing on real treatments such as addressing methylation and digestion, as they appear to show real promise. This is where we should put our energy, instead of wasting our time on such wild goose chases.

 

[Enid]

So what's with the MLV or XMRV positives (KdeM/WPI) found in patients around and being treated ? .......... no "end of story" !.

 

[maryb]

Same old same old, opinions presented as facts. But trust the good old Lancet and Daily Wail to publish them. Keep their cozy myths going, and us on CBT and GET - Yawnzzzzzzzz
I take it the blood ban still stands though- what a joke.
JPV - take methylation and digestion issues seriously in the UK? - not a chance, I've had every test going and they find nothing, they haven't a clue whats going on with us, we have to be our own doctors. As for the cause being a virus/retrovirus, they are desperate to sit on that one-too much money involved.We pay into the NHS the minute we start work here and what do we get, thousands of toeing the line moron GPs.
As for Judy - she's still a brilliant woman in my eyes and I'm now off to vote in the Vivant for WPI and make a contribution to Count me In.

 

[justy]

Is anybody able to read the lancet article in full? is this based on new studies or just a comment?

"The association of XMRV with CFS is now widely believed to be due to contamination of laboratory reagents. This, and the fact the XMRV is not a genuine human pathogen, has led to the editors of Science asking Lombardi and colleagues to voluntarily retract their paper. They have so far declined to do so, and now Science editor-in-chief Bruce Alberts has published an Editorial Expression of Concern about the paper." Medical news today.

This is nothing new. they refer also to 3 studies that are the nail in the coffin but dont say which studies they are.




"

 

[Jemal]

To put this comment in perspective: these two doctors use CBT and are probably the greatest promoters for it in the Netherlands. If it was ever proven a virus is the cause of ME/CFS, they have a problem (they will at least look a bit ridiculous).

edit: Van Kuppeveld is a virologist, as RRM pointed out later in this thread. Both work at the same department at the Nijmegen hospital, which is (in)famous for it's CBT in the Netherlands.

 

[Jemal]

Is anybody able to read the lancet article in full? is this based on new studies or just a comment?

"The association of XMRV with CFS is now widely believed to be due to contamination of laboratory reagents. This, and the fact the XMRV is not a genuine human pathogen, has led to the editors of Science asking Lombardi and colleagues to voluntarily retract their paper. They have so far declined to do so, and now Science editor-in-chief Bruce Alberts has published an Editorial Expression of Concern about the paper." Medical news today.

This is nothing new. they refer also to 3 studies that are the nail in the coffin but dont say which studies they are.
"

It's not a new study I think, just a comment. The 3 studies they are referencing are at least the two negative Science studies, don't know what the third one is.

It's another effort to bury XMRV/MLV research, which is far too premature to do I think.

 

[Jemal]

Another article about this comment:
http://www.dailymail.co.uk/health/article-2006038/Myalgic-encephalomyelitis-caused-virus.html

 

[ikke2001be]

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

 

[eric_s]

To put this comment in perspective: these two doctors use CBT and are probably the greatest promoters for it in the Netherlands. If it was ever proven a virus is the cause of ME/CFS, they have a problem (they will at least look a bit ridiculous).

Agree, Jemal. I only read the names and knew it's nothing new. We already know what those people think.

 

[eric_s]

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/

Regards,
K

Congratulations, K. That's the way to go and i hope we can do similar things in all the countries. I will go to a meeting of the Swiss group in 2 weeks or so and it would be great if we could connect with those Belgian groups to learn and share experiences, ideas, tactics, etc. I would love to talk about these things with you or anyone who is involved there.

 

[lansbergen]

Nijmegen treating journal readers with CBT.

 

[markmc20001]

Nijmegen treating journal readers with CBT.

Bingo! I agree 100%

 

[anciendaze]

Suggested title: "The song is ended, but the malady lingers on."

 

[RRM]

- The full text is avaible through http://www.meassociation.org.uk/?p=6673 (check reference 10).

- Van Kuppenveld is a virologist and not involved with CBT (AFAIK).

- The "third" study is the recently published Singh study.

 

[Jemal]

- The full text is avaible through http://www.meassociation.org.uk/?p=6673 (check reference 10).

- Van Kuppenveld is a virologist and not involved with CBT (AFAIK).

- The "third" study is the recently published Singh study.

Thanks RRM, especially for the link.

You are right about Van Kuppenveld I think. They both work at the same department though at the Nijmegen hospital and any sane ME/CFS patient knows to stay away from that place. Their CFS expertise center claims that CBT works for 70% of patients.

Van Kuppeveld and Van der Meer did research on XMRV and CFS patients in february 2010. They couldn't find any XMRV in patients or controls. The WPI later tested the same samples and found 30% XMRV. Van Kuppeveld defended their study by stating that the WPI must have contaminated the samples.

From the article you linked:

We declare that we have no conflicts of interest.

That's not entirely true I think.

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!

From the CFS expertise center website:

"CBT is the most-well researched treatment method for CFS. Several well done scientific effect studies have been done involving CBT, also in our hospital (Prins et al., The Lancet, 2001, 357 (17), 841-847). It was proven CBT is an effective treatment method for CFS."
http://www.umcn.nl/Zorg/Behandelingen/Pages/Cognitievegedragstherapie.aspx

 

[Enid]

They appear to play games - the meassociation - anyone seriously interested in all the research discovering facts to unravel ME seems not their goal.

 

[caledonia]

I don't get these articles proclaiming that XMRV is not the cause of CFS. The Science study didn't say that XRMV was the cause, it said it was associated with CFS. Big difference.

You can't disprove the Science study by claiming the opposite of what it never said. Not logical.

It would be more correct to say XMRV is not associated with CFS.

 

[Jemal]

Good news, one of the locations of the Nijmegen chronic fatigue expertise center is closing down 1 july 2011. Probably due to their success!
/sarcasm

Another quote from their website:
This form of cognitive behavioural therapy is the only proven effective treatment for CFS at the moment.

Their problem is also that they describe CFS by one symptom: chronic fatigue. Then they say there can be (but don't have to be) other symptoms.
Oh, and they use CFS, because apparently real scientists don't use the term "ME" as there is no scientific evidence for nerve tissue inflammation. They continue to say that ME is a term that patients and patient organisations use.

Grr... I never read the content on their website, because I was warned to stay away from them. They make me angry.

Edit: their supervisory board is made out of three people. One is a psychologist, the other a former politician and the third is director at the largest insurance company in the Netherlands.
GRRRR

 

[Enid]

It never was chronic fatigue - what a pathetic name given by the utterly ignorant sloshing around trying to be the cleverest.