A 4,000 samples study in Spain?

[omerbasket]

I translated the following (from Spanish) in google translate:

After these steps for the SFC, a few months later, in 2010 from the UK sowed doubts about this discovery. According to Myra McClure, one of the authors of "counter report" conducted by King's College and Imperial College London, the analysis shows that "there is no link between XMRV and the CFS, at least in the UK." Conclusions reached after analyzing blood samples from 186 people who suffered for years with this condition, some of whom were disabled by it. Perhaps, therefore recent studies, published in "PLoS One", point to the possibility of using anti-HIV drugs to alleviate the SFC, in dealing with the XMRV virus involved in infectious disease.

It should be noted that following this work in Spain, from the Hospital del Mar, is coordinating a comprehensive study of more than 4,000 samples collected from affected with CFS and fibromyalgia, "in order to analyze the presence of this or other viruses and provide definitive answers to the patients, "explains Javier Rivera says, a rheumatologist at the Hospital Provincial Institute Gregorio Maranon de Madrid and spokesman of the Spanish Society of Rheumatology (SER).

http://translate.google.co.il/trans...-una-enfermedad-real&sl=es&tl=en&hl=&ie=UTF-8

Now, it's difficult for me to understand whether he means that he would check this virus too in these samples, or wether when he says "this or other viruses" he means something like: "one virus or another virus", without saying that he would test for XMRV too.
If he does test for XMRV, I'm arfraid it might not be an aprropriate test, because as we've learned testing for XMRV and actually finding it if it's there is difficult and complicated - and you probably have to really want to test it in the best way in order to find it.

By the way, Van der Meer inserts himself to this atricle too.

 

[Alexia]

Hi Omerbasket
Thanks for the information, do you have the original text/link in Spanish?

 

[omerbasket]

Sure do!
http://www.larazon.es/noticia/7661-sindrome-de-fatiga-cronica-es-una-enfermedad-real

 

[subtr4ct]

Wasn't Dr. Mikowits recently in Spain with the purpose of consulting with researchers there regarding testing methodology? Let's hope this adds up to 4,000 samples + WPI methodology.

 

[Alexia]

"Cabe destacar que a raz de estos trabajos en Espaa, desde el Hospital del Mar, se coordina un amplio estudio con ms de 4.000 muestras recogidas de afectados con SFC y fibromialgia, con el fin de analizar la presencia de este u otros virus y ofrecer respuestas definitivas a los pacientes, apunta explica Javier Rivera, reumatlogo del Instituto Provincial del Hospital Gregorio Maran de Madrid y portavoz de la Sociedad Espaola de Reumatologa (SER)."

Apparently you are correct omerbasket they are doing a study in Spain with 4000 patients. " con el fin de analizar la presencia de este u otros virus y ofrecer respuestas definitivas a los pacientes " with the goal to check for the presence of XMRV (they don't mention XMRV, but before in the text it's what they are talking about, they say "that virus" so one deduces that they mean XMRV) and other viruses in order to give answers to the patients.
This is great news if the journalist got it right!! Well if they will use the WPI methodology.

 

[omerbasket]

subtr4ct, I know there is another study in spain, a very small one (with 10 patients I think), and I think the WPI was involved in getting donations for this study (since it doesn't have, or didn't have, enough funds), ao perhaps Dr. Mikovits was in Spain for that small study and not for the 4,000 samples study.

Alexia, I still think we cannot be sure that they would test XMRV. They do talk before that about XMRV and that's why I brought the first paragraph in the quote in my first message, but can we be sure that when he says "this or other viruses" by "this" he means XMRV and not just any one virus? In Hebrew we have a phrase that says "this or another", and by "this" it doesn't mean for a specific thing, but for a thing, some thing, not known... Can you say such a thing in Spanish (I'll give an example: "we don't know if X is caused by this virus, or another virus, but we know it's a disease that is caused by a virus - could be one virus or a few viruses combined toghether")?

It's a little funny, but I think that in order to be sure they're going to test for XMRV we need to try and clear that one out...

 

[gu3vara]

That would be a pretty odd (dumb) decision to study such a large group of individuals without being sure you have the right technique first.

Think about the money involved in such a large study!

 

[omerbasket]

Perhaps they would first test a small group (let's say 10 people) to see if they can detect it?
But as far as I understand it, the initial purpose of this study is to find something that causes ME/CFS or at least biomedical signs that can help diagnosing or treating it - and, as far as they are concerned, it really doesn't have to be XMRV (I would not be surprised if this study wasn't intended to test XMRV when the preperations for the study initiated).

 

[Alexia]

That would be a pretty odd (dumb) decision to study such a large group of individuals without being sure you have the right technique first.

Think about the money involved in such a large study!

Yes I agree. But it's true that Judy has been in Spain and there were rumours that she has been there talking about the WPI methodology. What maybe is happening is that they are doing a study checking 4000 patients for other viruses and within that they will check some of the patients for XMRV. This in case the journalist got that information correctly. I tend to be suspicious of journalists.

 

[Rivotril]

That would be a pretty odd (dumb) decision to study such a large group of individuals without being sure you have the right technique first.

Think about the money involved in such a large study!

I agree, that would indeed not be a very logical way of working.
Unless...it's another (and this time huge ) Weasel/Van der Meer-friends-group study to convince the world one more time that XMRV in ME/CFS does not exist.
I can't believe that anyone can come away with doing a "replication" study again without following the WPI-protocols, even more since Mikovits published the accurate methods on the internet.
hehe I notify myself not having a good feeling about the quality of the science in case when articles let Van der Meer give his opinion about things.

I just want to see the (four) WPI methods, and CCC or at least Fuduka criteria, and no blood that was stored for years, and no psychologicians as co-authors...
Just want a REAL replication study and no more tricks

 

[omerbasket]

I agree, that would indeed not be a very logical way of working.
Unless...it's another (and this time huge ) Weasel/Van der Meer-friends-group study to convince the world one more time that XMRV in ME/CFS does not exist.
I can't believe that anyone can come away with doing a "replication" study again without following the WPI-protocols, even more since Mikovits published the accurate methods on the internet.
hehe I notify myself not having a good feeling about the quality of the science in case when articles let Van der Meer give his opinion about things.

I just want to see the (four) WPI methods, and CCC or at least Fuduka criteria, and no blood that was stored for years, and no psychologicians as co-authors...
Just want a REAL replication study and no more tricks

I agree with you, I too am arfraid of another case of a faulty study. But let's hope this is not the case and that they would use the exact methods of the WPI and would choose their cohorts in the same way as the WPI did.

 

[Rita]

We, spanish CFS, don t know nothing about this huge study, but only about the little one with 10-12 patients for which we are collecting money.Its impossible to collect so many blood of CFS patients , if patients groups or CFS associations in this city (Barcelona) ignore this.
Spanish CFS doctors and reumatologists treating FM are very confused now, they dont want to work together .Every one wants to look for the XMRV, but patients have obtained to stop two studies with only PCR,because we know they are no possible to meet the XMRV this way...we patients know this, but doctors no....very surprising...
Only very few spanish doctors came to see and hear Dr Mikovits...its a pity....but a lot want to do a XMRV test.....We , patients are, controlling the test they want to do.(If we can or if we know...)
In all Spain its impossible to meet 4.000 spanish CFC patients, because so many have not a good diagnose
with only 4 o 5 specialist for more than 40 milion people.

 

[Rita]

Well, the title of the article is: Chronic fatigue syndrome is a real illness?
Patients are very angry and many patients have written to complain to the journalist.

 

[omerbasket]

We, spanish CFS, don t know nothing about this huge study, but only about the little one with 10-12 patients for which we are collecting money.Its impossible to collect so many blood of CFS patients , if patients groups or CFS associations in this city (Barcelona) ignore this.
Spanish CFS doctors and reumatologists treating FM are very confused now, they dont want to work together .Every one wants to look for the XMRV, but patients have obtained to stop two studies with only PCR,because we know they are no possible to meet the XMRV this way...we patients know this, but doctors no....very surprising...
Only very few spanish doctors came to see and hear Dr Mikovits...its a pity....but a lot want to do a XMRV test.....We , patients are, controlling the test they want to do.(If we can or if we know...)
In all Spain its impossible to meet 4.000 spanish CFC patients, because so many have not a good diagnose
with only 4 o 5 specialist for more than 40 milion people.

Note that the article talks about "4,000 samples" as oppose to "4,000 patients", and they're also samples that comes from people with ME/CFS as well as people with fibromyalgia.
So let's say you collect 4 samples from every patient, and you take the same number of fibromyalgia patients as the number of ME/CFS patients that you take. So then, you have "only" 500 ME/CFS patients.
However, I'm suspicious too.

And by the way, when you say "we patients know this, but doctors no....very surprising..." about PCR studies regarding to XMRV, I also suspect that at least some of the doctors DO KNOW IT, but really don't want XMRV to be found as the cause because than they might lose money (because they supported other approaches as for the cause of ME/CFS or because they said that ME/CFS isn't a real disease, or because they specialize in ME/CFS and if their patients would be cured, or would go to see doctors that specializes, let's say, in retrovirology - than these doctors might lose some money).

 

[Elipoarch]

Hi all, new here.

My name is Eli. I'm from Barcelona, and a CFS sufferer for 6 years now. I'm also involved in a CFS forum from Spain (http://www.sfc-em-investigacion.com), and collect worldwide info on CFS.

I can tell you that there are currently only two XMRV studies going on in Barcelona that we know of. One of them is the one that will be conducted in Hospital del Mar, which has an important retrovirology team, and is in contact with the WPI. Actually, they are the ones that held Dr. Mikovits conference in Barcelona. The study will only have 10 or 12 CFS patients and about 20 control subjects (I hope my memory is not letting me down now), and it has recieved no public money, actually, they are still trying to collect the money to pay for it.
The other study will be held in Vall d'Hebron, by Dr. Alegre Martin and his team. They DO have money from the government, and it will probably be a lot bigger. But, as far as we know, it is only done "for estatistical purposes" (no idea what they mean by that exactly). We do know that Dr. Alegre is studying "familiar aggregation" in CFS. It seems he has 167 whole families affected by CFS, some as large as 5 members, and he is very intrigued by this fact. He attended the conference by Dr. Mikovits, but Vall d'Hebron Hospital did not have (at least till now) a retrovirology unit as that of Hospital del Mar, so we don't know what kind of tests they are going to develop: if they are going to settle for PCR or if they will try something "more like it" and try to conduct WPI-like tests. If someone can have 4000 samples will be Vall d'Hebron, because it's one of the recognised CFS units, has recieved money from the government, and they are raising money from other actions (selling music CD's, concerts...)
I have seen many PWCs suspicious about the Vall d'Hebron study, wondering if it will be another "XMRV negative-before-we-start" study, but we really don't know if they have reasons for that or not (the fact that the hospital that got the money for a retrovirus study is the one that is not known for being important in retrovirology, discarding the one that is --and that is conducting what seems to be a REAL replica to the WPI's study-- has a lot to do with those suspicions). Let's hope they are wrong.

 

[Rita]

Of course, Omerbasket, I agree with you completely.
Times are changing and there are always those who resist. It is a very important change for us to be attended by retrovirologists and not by current specialists who have never known the cause of the disease.
We know that there are studies which is intended to demonstrate the absence of XMRV, are very quick studies and have not had problems with funding, in contrast to those studies that seek XMRV retrovirus.

It is clear that the road will be very hard, because few countries and medical institutions are interested in our health, our lives and our suffering.
In today's world, the most important is the economy, not people.
It is shameful to see that many doctors and researchers want to cheat

 

[spindrift]

Elipoarch,

Welcome to the forum and thank you for giving us insight about the situation in Spain.

I understand people with CFS being skeptical about the testing methods and who does the tests.
But on a positive note, it IS great to see how much attention XMRV is getting in Spain. I like
that they want to look into whole families that have this as this might lead to some key answers.
I am also happy to see that they are looking at XMRV in fibromyalgia which in my humble opinion
is pretty much the same as CFS. If I recall right WPI tested 5 people with FM and all were XMRV
positive.

 

[Alexia]

Thanks Elipoarch. It's great that somebody from Spain can give us some information about what's happening there.
We really can't trust this news, already the journalist got it wrong and says that the study is being done at Hospital del Mar (Cabe destacar que a raz de estos trabajos en Espaa, desde el Hospital del Mar, se coordina un amplio estudio con ms de 4.000 muestras recogidas de afectados con SFC y fibromialgia). According to your information Elipoarch this is not possible, if there is a big study it would be in Vall d'Hebron. Why can't these journalist just take some time to confirm their data before they write an article?

 

[omerbasket]

Elipoarch,

Welcome to the forum and thank you for giving us insight about the situation in Spain.

I understand people with CFS being skeptical about the testing methods and who does the tests.
But on a positive note, it IS great to see how much attention XMRV is getting in Spain. I like
that they want to look into whole families that have this as this might lead to some key answers.
I am also happy to see that they are looking at XMRV in fibromyalgia which in my humble opinion
is pretty much the same as CFS. If I recall right WPI tested 5 people with FM and all were XMRV
positive.

In the previous meeting of the CFSAC Dr. Peterson said that the WPI tested 20 fibromyalgia patients for XMRV (I'm not sure if by the 4 tests they have, including serology, or just by one test, probably PCR) and 12 of them (60%) were found to be positive for XMRV.

Rita, I definitley agree with you, and I hope that the good people would win here.

Sue, I'm not sure I understand what you said. You said that when should wait for the CDC or the Glaxo Smith Kline studies to come out, but than you said that you don't trust any of them... You ment that you don't trust the CDC and Glaxo Smith Kline, or that you don't trust other researchers?

By the way, I myslef do not trust anybody here that are not the WPI/Cleveland Clinic/NCI. I will look at any study that would not find correlation between XMRV and ME/CFS suspiciously, even if at the end I would agree that the study is correct. I think that there are many foreign interests here that might drive people to not try to find the truth.

 

[Elipoarch]

Thanks for your welcome

Thanks for your welcome messages.

I wish there was really a study with 4000 samples, but, unless they can get 4000 samples out of 10 or 12 patients , it's not in Hospital del Mar, that's for sure.