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A 4,000 samples study in Spain?

Discussion in 'XMRV Research and Replication Studies' started by omerbasket, May 11, 2010.

  1. MNC

    MNC Senior Member

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    I'm Spanish too and I don't trust it. The article mentions that the doctor who says that 4.000 samples are going to be analyzed is Dr.Rivera.

    I met Dr.Rivera last year and he was disgusting, unpolite and radical. Probably the most radical doctor against a physical cause of CFS I have ever met. He specifically denied to see any of my medical reports and tests, specifically the tilt table test one where I was diagnosed with severe dysautonomia (even describing a cardiac arrest that I suffered at the test) and anything I had taken with me.

    He specifically said that "we all get old", that "anxiety is difficult to deal with" and recommended me (by written) psychotherapy and relaxation techniques. And I can prove it because I keep his official medical report, and it's a quite valid one because he works for the Spanish National Health System in a very big and important hospital as a Rheumatologist specialized in Fibromyalgia to whom I was referred by another famous CFS/FM doctor in Barcelona, the one receiving all patients from all over Spain in his CFS/FM private clinic.

    It's interesting to notice how a Rheumatologist can diagnose an anxiety disorder after a 10 minutes interview without having even looked at my medical reports. And even to recommed by written psychotherapies. And I wonder why such behavior is allowed by law when he is not a specialist in psychiatry or psychology.

    I have difficulties to believe in these guys. For my experience with him and for my experience with the leader of that suppoused big study going on, Dr.Alegre from Barcelona, who had a horrible and unprofessional attitude when I travelled to see him. The most horrible trip of my life for nothing. Completely unprofessional, also rejecting to read or even see my medical reports and tests and loading me with a hundred medications after a ridiculous quick interview.

    I wish it was true, but rumours say very bad things about them, and, having personally met these two, I suspect that it's not going to be a happy ending investment of our public money and our hopes.

    All these doctors involved, first of all, have personal economic interests in CFS. They are all doing their own researches in other hypothesis of CFS and they have private practices which are very demanded and give them a lot of money. They charge a lot for the visits and for the reports that people desperately need for the disability recognition (usually useless and dismissed but still required).

    Why do I have to believe that they are honestly willing to find a cause and a cure for CFS that will end their very profitable businesses?

    I hope to be wrong. If only the WPI would agree with their protocol that would help, but I can't help being little confident in all this people.

    And concerning this post:

    Dr.Alegre has been working in genomics and proteomics as his hypothesis to solve CFS. He told me in person when we met. That would explain why he will be focusing in families. Again, not very likely that his main interest will be to find XMRV if the study has that purpose at all.
     
  2. Elipoarch

    Elipoarch

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    I don't know about Dr. Rivera, but I don't understand what he has to do with the study at Hospital del Mar, which is conducted by Dr. Soriano, who is a well-reputed retrovirologist, (HIV specialist).

    Well, I had an appointment with Dr. Alegre the day after Dr. Mikovits' conference in Hospital del Mar, which Dr. Alegre attended. He seemed impressed with Mikovits' explanations about XMRV, but he did mention that what worried him is that he didn't trust CFS patients taking antiretroviral medications, because he felt that most CFS patients are not willing to take any medication at all. But, the next day he and others held a conference on CFS and they were very neutral about XMRV and its implications, and they only mentioned WPI study, but also the other three that couldn't find it in Europe, with no more considerations about the methods they used... which made some of the patients quite angry.

    But, he MIGHT be interested in XMRV as an explanation for family aggregation, because Genomics can explain pediatric CFS, but it doesn't explain husband-wife having the same illness (well, it could, since there are couples with similar genetic expressions or mutations, but a retrovirus could be a good answer, too). Since my husband had mononucleosis when he was a teenager, and has asthma and arthritis (both autoimmune diseases), he wants to control both my husband and my daughter, just in case. I think Dr. Alegre might be open to new findings... at least now, after the WPI study.
     
  3. omerbasket

    omerbasket Senior Member

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    It's very very sad, what you said. And I feel you're probably right about Dr. Rivera (I don't know about Dr. Alegre, especially since Elipoarch's message). I hope that the relevant people would see that some of these reaserchers have an interest in keeping us sick, and that some probably follow that interest and don't try to find the real answer.
     
  4. MNC

    MNC Senior Member

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    Well, about Dr.Alegre, it says enough that he was "impressed" by what Dr.Mikovits said in Spain. He didn't know yet? Because we all knew very long ago. Was it the first time he heard of it in detail? Sounds like it. Maybe he never bothered in reading on the internet. And that is our leader? The one we pay to help us and cure us?

    When I saw him last summer I asked him about "that virus that an American CFS research institute has discovered" and he knew absolutely nothing. He had never heard of the WPI. Last summer, many of us had already heard of it and had seen the YouTube interview with Ms.Whittemore and Dr.Mikovits which was there from April (http://goo.gl/nMmh) and rumours were know by everyone by the summer.

    Considering that he is the leading Spanish CFS doctor he doesn't seem to be very up to date. Not to mention the ridiculous questionnaire he asked me and the lot of aggressive medications he prescribed me including pain killers, antiinflammatories, cortisone, fludrocortisone, hydrocortisone, two SSRI antidepressants, one hypnotic benzodiazepine, another tranquillizer, and I don't know what else. All after a very quick consultation where he didn't even examine me or read my medical reports.

    And when he says that patients will be reluctant to take antiretrovirals I can only wonder what kind of statement and thinking is that. Does he mean that patients will be reluctant because in fact they are not so bad and would prefer to stay the way they are without taking potentially harmful medication? Does he mean that the patients should take the antiretrovirals without having being tested for XMRV? Without any experience or successful protocol yet? Or does he mean that in the future, those patients who will test XMRV positive and feel very ill will still reject the treatment?

    Anyway, this is a bit the same all over the world. At least something seems to be moving in Spain and I don't think they want us to remain sick. I don't think they are so evil, but I do think that they are not in the same hurry and have the same priorities and motivation for being informed that we patients do. And also that many of them are making a lot of money with this and to me that is still unethical. Charge as much as you want if you cure people, but don't charge 150 per visit when you only make more harm than good. For instance.

    One last story/example. Two months ago, an internist from the clinic I go to frequently told me he was very interested in CFS and wanted to open a little clinic in Madrid along with some colleagues. That they would charge little as he knew that patients were easily without income. He wanted me to help him with information. He didn't even know what XMRV was either. He even said that CFS was a "very beautiful illness" (meaning for a doctor to study, but still what a sentence for me to hear...). However they already had rented the office in a rich part of Madrid. I mean, he said he was very interested in CFS to help people and not going for the money, but he neither knew much of CFS nor his office location would be exactly located in a modest area. On top of it, I left him many information papers and brochures of mine for him to study a bit, and we agreed to meet the following week. He never called me as he said he would. I called him 10 days later. He said he would call back in 30 minutes. After 10 days he hadn't called. I called again and he didn't answer. I left a message. He didn't answer. I called again one weak later, he didn't answer. I left another message urging him to mail me back all my documents. One week later he hadn't done anything. I ended up calling to the (private insurance) clinic and sending them an email telling the story. They told me they would pass my email to the director of the clinic. In one hour he called me and I received the documents the next day.

    Unfortunately this seems to be the norm more than the exception. We all know them. Money is all they care about. Although sometimes their ego goes first if they are rich enough.
     
  5. omerbasket

    omerbasket Senior Member

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    That's what's happening when doctors become such not due to idealism but due to the fact that they want money and prestige. I talk about the bad doctors here - because there are also doctors who are wonderful people, such as Dr. Mikovits, Dr. Peterson, and even doctors who I know personally.

    I don't know what to tell you, people. I mean, if I could I would probably snuck a mole to those places where doctors might be trying-not-to-find-XMRV.
     
  6. Rita

    Rita Senior Member

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    Question to Dr. Rivera: in internet:
    (Its is a leading doctor in the field of fibromyalgia en Spain, very closed connected with politicians, some responsible this illness are not accepted like serious ones by the goverment )

    Dear Dr Rivera..The question would be on the news that reached us a few days ago regarding the study they will do over 4000 blood samples of patients with FM and CFS in collaboration with the Hospital del Mar in Barcelona and the interest generated among the group of patients and scientific field internacional.
    Since the publication in Science October 8th where he meet 98% of patients with the retrovirus XMRV in SFC patients, have already been three studies from Europe that have not found it, basically for two reasons: a cohort of patients less than rigorous and methods for determining appropriate (PCR's simple without using the techniques described in the "paper" of Science) I have enclosed part of an email from the Dr Judy Mikovits in which he makes mention of the fact that try searching the XMRV by a simple PCR is a desire not find it, I herewith quote :(...) If They Do extraction of unstimulated whole blood to METHOD THAT HAS NEVER BEEN TO BE VALIDATE Capable Of Detecting XMRV. Quite the Contrary it is Exactly How NOT to detect XMRV. THEY WILL FAIL TO DETECT LIKE EVERYONE ELSE WHO HAS FAILED TO DO IT Deliberately CORRECTLY! Just Because Anyone Can buy a real time PCR machine, IT DOES NOT MAKE THEM A RETROVIROLOGIST. Genomic DNA PCR OF SINGLE DESTINATION IS FOR FAILURE!
    As you may know, Dr Mikovits was a couple of weeks ago speaking at the Hospital Germans Tries i Pujol (Can Ruti), which discussed all these issues to clinicians and researchers, and we were surprised . they dont came here to know, when Dr Mikovits was so close. We hope that when they publish a technical report of his trial ,these techniques are pursuived, otherwise quite elusive and difficult detection (even for retrovirology centers specializing in HIV). Remember that the American Institute has offered to help those who want to replicate their study by providing documentation, technical advice and positive samples ello.

    12/05/2010 11:40
    Answers Dr Rivera :

    The mentioned project is being carried out for over a year. Among its objectives, was not initially assess the XMR
    With the data we have available today will have to assess the feasibility of doing so.
     
  7. omerbasket

    omerbasket Senior Member

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    As it seems - I guess I hope Dr. Rivera would not study XMRV. Another faulty study is nothing but harming.

    It is sad that Dr. Mikovits came to spain to teach the doctors there how to detect XMRV in the blood (WPI is the only institute with proven methods for detecting it in blood almost whenever it's there!) and only few doctors came.
    I hope the good would win the evil here.
     
  8. Rita

    Rita Senior Member

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    You can see here:
    http://www.biomedcentral.com/1471-244X/9/S1/S1

    a document signed by Dr Rivera few months ago, that was published in a psyquiatric web....also by some others members of Carlos III Institute, they arrived to the conclusion that the most important treatment for CFS are cognitive therapy and exercise....they said any virus are implicated in CFS...
    This paper is more close to Wessely than a Mikovits..or De Meirleir.
    This document is that one that doctors in Spain received to know about CFS.
    You can imagine how we patients are angry.
    Now ,Carlos III Institute are trying to do a research about XMRV,( or viral implications in CFS , that supose is the same ) for three years in a unknow and private university, with public funds.Do you think we can be sure they are interested to meet the retrovirus? Or they prefered to waste public money but CFS patients continue the same, without treatment nor recognition?
     
  9. omerbasket

    omerbasket Senior Member

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    Perhaps there is something we can do to stop it? Like e-mailing the institute's director or something?
     
  10. MNC

    MNC Senior Member

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    It's even more absurd when you hear Dr.Alegre saying in this conference (http://vimeo.com/290505 - http://vimeo.com/341273) that no CFS patient improves by psychiatric treatment. That he has seen patients for over 20 years and no one improves with psycho-meds but the opposite, they get worse. He is very specific when he says "not a single one in decades, while the patients of my psychiatric colleagues improve in a decent percentage".

    So why did Dr.Alegre prescribed me two SSRI antidepressants and two benzodiazepines? And why are these people somehow co-operating when they have such different perspectives? I was referred to Dr.Rivera by Dr.Ferrn, who told me to go him in his name because I couldn't travel to Barcelona. Dr.Ferrn told me that my tilt table test and dysautonomia were very severe and that they treat it over there with different techniques. I expected Dr.Rivera to be cooperative and paying me attention, at least about my tilt test and dysautonomia, I thought he would also treat my dysautonomia just as Dr.ferrn in Barcelona told me they do, but to my surprise he was such a j*rk. I waited months to see him and had to go first to my GP who addressed me the Rheumatologist who authorized me to be seen by Dr.Rivera. All that time, effort, suffering and money to be sent home with a kick in the ass and a diagnosis of anxiety after 10 minutes.
     
  11. Rita

    Rita Senior Member

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    The most curious and inconceivable is that none of the doctors of this paper are known to visit CFS patients.Perhaps we have six or seven CFS spanish specialists, and none of them are in this study. How can they make a paper like that, so important for CFS patients and their treatment, without have seen any patient in his life? They only made a work of copy of the articles in internet that defend the theory that CFS in not a serious illness.
     

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