1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

WPI Letter to Dr McClure ****

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Apr 12, 2010.

  1. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    So they're not really qualified in very much, then? As pollycbr says, the plot thickens.

    And the following was posted on the WPI Facebook page by a Dutch fan. I presume the "Wessely-clones" she refers to are van der Meer and Bleijenberg.

    [Quote starts]

    I didn't know van Kuppeveld untill the study. But the fact he is linked to the Radboud University in Nijmegen made me very suspicious (to say the least). At least two "Wessely-clones" are working there AND they have a "Chronic Fatigue Knowledge Centre". Patients are selected beforehand (you have to be able to travel to Nijmegen -would be a small miracle in my case- you must'nt be involved in any procedure to get disability pension, you may not take any drugs e.g. see other doctors or follow other doctor's protocol and when you're accepted you're not allowed to have contact with other sufferers!!). After all that you may follow CBT.....

    I hope the letter from Mrs. Whittemore and this publication will change our government's / press' and general public's view, they all believed these so-called doctors claiming 70% of patients could be cured or at least feel much better after CBT treatment!!!! If the press wants to publish anything on ME they first call Nijmegen....we've been trying to fight this for years, with no success up till now.

    Worse even, up till a few years back our only ME patient organization supported Nijmegen!!
     
  2. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22

    Yes, I want to know if it's true that...
    :confused:



     
  3. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    181
    yorkshire
    im itching to know what her feathers are lol ;-)
     
  4. lansbergen

    lansbergen Senior Member

    Messages:
    1,160
    Likes:
    594
    Fred Quoted from an article: Worse even, up till a few years back our only ME patient organization supported Nijmegen!!

    I thought they still did it untill i saw the article I mentioned here on their website.
     
  5. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Another article in the Gelderlander today

    Here's another article published in the Gelderlander today.

    My favourite bit courtesy of Google-translate: "Nijmegen messy job, so they believe in America".

    [Quote starts]

    Fatigue Virus Radboud wedge and America

    NIJMEGEN - Has the Radboud Hospital made a mistake in chronic fatigue? That accusation is read today in the health and lifestyle magazine Ortho. That says relying on information from the Whittemore-Peterson Institute (WPI) in Reno, USA.

    It has conducted research with exactly the same blood samples as the Nijmegen Radboud Hospital. It did, however, different results surfaced.

    Nijmegen messy job, so they believe in America. But according Radboud researcher and molecular virologist Frank Kuppeveld of that nonsense. "The investigation in America may become contaminated blood samples. This may explain the difference in outcomes."

    UMC St Radboud and the Whittemore-Peterson Institute American (WPI) challenge each other, according to Van Kuppeveld also in friendly competition, since half years apart. Inset: the so-called retrovirus XMRV causes chronic fatigue syndrome (CFS)?

    These are not just a study. In October took the WPI research center in the world press and the renowned scientific journal Science by claiming that the blood of patients systematically the presence of the retrovirus was able to show.

    Patients responded joyfully, because it finally can be proven that fatigue is not 'between the ears' is but an identifiable organic cause has. In Canada would have voices to blood donor screening for the virus, as with HIV, in order that chronic fatigue can not be transmitted through blood.

    Frank Kuppeveld and internist Jos van der Meer however questioned the findings of the study in Reno and made himself a similar study. In February, they reported in another scientific journal, British Medical Journal, they have reached 32 patients with chronic fatigue, no virus could be found, nor a control group. Conclusion From Kuppeveld: "The blood samples used by the Americans, were probably derived from a specific patient group that is not representative of the majority of CFS patients."

    But there they have the same survey was repeated Nijmegen, Nijmegen blood samples. It is the virus have been found and still at 30 percent. The Americans now claim that the virus scan in Nijmegen perhaps too short and careless way possible.

    From Kuppeveld feels no means embarrassed because he thinks it is the turn Americans Nijmegen contaminated blood. He feels encouraged by the knowledge that, despite many similar studies elsewhere, never anywhere else in the world has shown a relationship between CFS and the virus. "In fact, there are also two British studies that the blood of CFS patients no XMRV virus is found."
     
  6. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    The article was posted in the thread below yesterday and there are already discussions about it. Just a suggestion but we should either post in the original thread or ask the mods to pull out discussion points from the original thread and post it here, just to avoid unnecessary foggy brain confusion.

    http://www.forums.aboutmecfs.org/showthread.php?4331-WPI-Letter-to-Dr-McClure-****&p=70114#post70114

    ETA: You did it again, Maarten. How do you do that ? :D
     
  7. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
  8. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Comments to the article in the Gelderlander

    [Quotes start]

    Looking for answers, we approached yesterday, Dr Judy Mikovits, research director of the WPI and director of the XMRV research. They gave us a telephone interview the necessary answers. "Frank Kuppeveld seven samples sent us," said Mikovits. "They were numbered 1 to 7. It was cDNA, which he had made of RNA. "

    The WPI tested the seven samples with an advanced PCR technique in a closed system, so no contamination (pollution) could occur.

    Three samples were positive.

    ******

    The attitude of "Nijmegen" to patients with chronic fatigue is scandalous !!!!! Anything that does not fit into their dogma is denied, blinkered research is not science! Unfortunately, the attitude of "Nijmegen" good politics, no expensive care for people whose complaints "between the ears" are!

    Is the "Ask" now also other expensive patient groups tested to demonstrate that substantial savings could be on? How is this political pseudo-science? Stop the quackery!

    *******

    - There is no contamination, it is excluded
    - This is a real and potentially harmful virus that attaches to various organs,

    CVS is a by-Nijmegen stretched diagnosis, where all people for more than 6 months are weary heading. ME is the original group that started these investigations ever. By speaking about''special''patients confirm you this picture, there is a clear subgroups. This also explains why only 30% of CBT patients works. This Nijmegen gepropangeerde therapy is right for one selected by their''special''patient group, you will never for the whole group found a clear cause or treatment, this is the fallacy,

    - Patients know all too well that these fatigue-which contain no more symptoms between the ears, since they have no confirmation of these scientists is needed. Patients want to heal and know where they are really suffering and not to bunch the reeds are sent with no effective treatment such as CBT,

    Interestingly, the way Nijmegen XMRV deals. What a bias that is unprecedented.

    ******

    U.S. samples are not from a specific area, but patients throughout the U.S., just that the WPI has expanded its last letter put out!

    And in the only lab that until now a fairly sensitive test XMRV (vipdx), a daily XMRV positive cases were found.

    Even in these blood samples of Nijmegen 20 years old (1991), and patients themselves as ME patients were selected by filling out a questionnaire (these patients are not medically examined !!!), so possibly a large number of depressive / no ME sufferers are, the WPI is a significant number of cases XMRV!

    The WPI has verified its results include the National Cancer Institute, and the Science study worked the first discoverer of the virus XMRV (Silverman) along! But admit Nijmegen'm wrong (and ME is not psychic), would end their whole heart Chronic fatigue mean end of career, reputation, power, money etc

    Abroad, no one takes these "scientists" seriously, but unfortunately they have much power in the Netherlands

    *******

    What are the most unprofessional is the concealment of evidence that your research is flawed. Van der Meer who really has a plate on his head. Or rather worse, he just tries to twist the whole thing. If you do before you publish all evidence to the WPI that some XMRV same blood samples is (3 of 7 am) then it's case first clarify what it the problem is before you publish. But no. And also again logical because many CFS patients will have a half years psychotherapy follow when a retrovirus in their body have their complaints might explain. Allow at least one was really the first treatment target.

    A good example of what not to do. Let research conducted by people who are independent! Not by someone throwing his glass as he XMRV would find in an investigation. Who strongly believed the findings of a study on the harmfulness of tobacco smoke made by Phillip Morris ....

    *******

    If someone accused who have contaminated the samples seems to me that there is absolutely no question of "friendly rivalry". I call to throw mud. Not very professional response from the gentleman of the gentleman Kuppeveld.Laat simply more concerned with psychology rather than with retrovirussen.Een refresher course approach or conflict would not hurt him.

    *******

    To my knowledge, the Whittemore Peterson Institute XMRV never claimed that the retrovirus would be the cause of CFS, they claim only the virus in more than 95% of patients with ME, fibromyalgia an atypical MS have found.

    *******

    I must say that I am preparing Kuppeveld of this highly inappropriate. I believe scientists should always be flexible, even or perhaps even criticism of others. It is quite a coincidence that Dutch and 2 British studies could not find - in both countries there is the idea that fatigue would be curable through behavior. Also very coincidental that the biggest proponents of this behavior contributed to the investigations of this retrovirus, as I recall the first time that psychologists are involved in retro virology!
     
  9. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    181
    yorkshire
    Van der Meer who really has a plate on his head. ROFL
     
  10. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    I can think of somewhere else I'd like to put a plate.
     
  11. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    I love this translation:
    And I'm going to have to disagree....I do have fatigue "between the ears"! :D
     
  12. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Thats fine move it to the other thread.
    I started that thread as well lol!!
     
  13. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    I don't know why it's called fatigue. It should be called Chronic sickness/ illness I feel chronically ill, fatigue is what my boyfriend gets when he has been to work. There is nothing *fatigue* about this. Do you HEAR THAT SCIENTISTS and DOCTORS!!!!
     
  14. Gerwyn

    Gerwyn Guest

    totally and absolutely agree to use the word fatigue to describe this illness is plain daft
     
  15. Gerwyn

    Gerwyn Guest

    Has anyone got this illness?

    fatigue: A condition characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness and tiredness. Fatigue can be acute and come on suddenly or chronic and persist.

    "Fatigue" is a favorite medical word. When a patient says they have been feeling unusually tired, "real tired," the doctor will usually write down that the patient presents with "fatigue."


    Anyone got chronic weariness syndrome?
     
  16. Andrew

    Andrew Senior Member

    Messages:
    1,981
    Likes:
    1,275
    Los Angeles, USA
    I'm glad this was a new thread. It is new information about a new article. I had already stopped reading the other thread, and would have missed it.
     
  17. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    This really is going to make a great movie.

    Thank you, again, Canada. Banning CFS patients from donating blood just may be the power move that changes this story in the press.

    "Mikovits is not the only one who takes very seriously XMRV: earlier this month it was announced that in Canada, people with CFS suffered no longer allowed to donate blood. Canada is the first country in the world that this precaution has been taken."
     
  18. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    I agree. Especially when a thread is so long, many people would miss this new information if it would not be in a new thread. It's a new information, and therefore I think it should have it's own thread (even though it's related to the WPI letter).
     
  19. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    villagelife wrote,
    Just to clarify, I believe the phrase "between the ears" is a poor translation of the Dutch for something like "all in your head".

    As to the term "fatigue", I agree it's an inadequate word to describe the crushing incapacity most of us experience with this illness, as we've discussed many times on the Forum. Laurel has an excellent blog entry on this topic.

    However, I do think "fatigue" accurately captures some aspects of the illness, at least for me. What I meant when I said I have "fatigue between the ears" (tweaking a term from the translation) is that I have very poor cognitive stamina. After concentrating on something for a short time--emailing, reading, even watching TV--my cognitive energy gives out and I have to rest with eyes closed until I can resume.
     
  20. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    It's not neccesarily the question. I mean, yes, it would probably be more likely that a healthy man who has people who are close to him and have XMRV, would have XMRV too, but the WPI's study, as well as the study about prostate cancer, and perhaps even the Japanese study, have proved that XMRV is found also in healthy people - it's just that there is much less precentage of healthy people with XMRV, than of people with ME/CFS or prostate cancer.

    It is possible that the sample was of a completely healthy man/women, who just happened to have XMRV. Besides, who were those "Healthy" people? Because if I'm not mistaken, the some of the "healthy people" in the second British study had cancer... So is it certain that here, the healthy people really were not diagnosed with any disease, and were feeling very healthy their all lives (besides regular episodes of illnesses which every person gets once in a while)?
     

See more popular forum discussions.

Share This Page