abuse of power

Discussion in 'Fibromyalgia Main Forum' started by stschn, Jun 18, 2011.

  1. stschn

    stschn New Member

    We know the the researce of retrovirus was stoped 20 years ago. We know that the first-and I think only money given to the CDC for Me/Cfs for research was used for polio and measels. We know that they are saying that the retrovirus found in some 75% of the blood test done on Dr. Petersons colection of blood samples of his patiens over the years show the XMRV. The CDC claims that the lab was contaminated. If that were true would not all of the samples have come back the same? My lab work came back positive and there was a note on it that the test was not FDA approved. Big surprise when I got a call yesterday that altho my doctor(a highly though of and long time infectious doctor had given me a perscription for the aid meds. My boys had had 2 white mice and one white rat when they use to sell them in the pet stores. Yesterday my insurance company called to say they would not send the aids meds as if was not FDA approved for XMRV. Thanks to the CDC. What is the deal with them? They just all hate women?
    I admire the people in San Fran that were able to put on a protest and I know what they went through-health wise-. There is no way I could do that. SO what I have done is write letters to the first lady obama reminding her of her children and what would hapen if they were to get this infectious desease-5 different letters, I chose her as the Presadent is so busy I'm sure it is low on his list altho he did promise to look into it. I wrote to the National Democratic congress and to Presadent Clintons foundation.
    They did so much for Aids in Africa why not a diseasethat follow on the heels of Aids and is in his own country. Will it do any go? I don't know but it would have a better chance if we all wrote these letters. We are over one million weak with no one to help us but out self.[This Message was Edited on 06/18/2011]
  2. simpsons

    simpsons Member

    good for you don t ever lose that fighting spirit, and you are so right that we would have a better chance if we all joined together and protested in any way that we are well enough to do so.

    i was only reading today that the mono virus stays in your body for life and can reactivate, so many have a mono history i feel this needs investigation also.

    Not only xmrv but Dr Chia found enterovirus in over 80 per cent of patients he tested and has had some good results with his treatment, with such a long history of entero viral infections going back many years this also needs funding

    we need viral research and this will bring viral treatments which is what we need

    be that by supporting the immune system or by directly treating viral infection

    also there could be environmental element to this illness many pesticides and chemicals in the food chain and products we use can damage the immune system and make viral infection take a hold.

    in the uk many use herbal treatments and i use a medical herbalist who treats me with anti virals of the herb world. so i am very interested in both dr chia and judy, one of dr chia website cases is from the nevada outbreak and showed enteroviral infection

    research is needed to work out the connection between the two and how they may interact together

    so yes all pwme from all around the world should work together to try to find a solution
    as my title states If you are not a part of the solution you are a part of the problem

    many are so ill they can t do much more than sign an online petition or click a link to send a pre written letter

    the charities should be organising this and fighting for us going to the press, however i would write to your local newspaper and national papers with your story

    inspiration can as you say be drawn from the aids story and how they fought back and also how the cancer charities fought as well. at one stage there was no research funding for cancer

    please post the reply that you get from the first lady

    i wonder though if we need to look at fund raising ourselves for treatment research to get the evidence that it works. for many years we have tried to lobby governments around the world and to no avail. perhaps we need a new approach

    thank you for posting
  3. gapsych

    gapsych New Member

    There are a few misconceptions in your post that I feel need to be pointed out.

    The retrovirus research Elaine DeFreitas did was not replicated, even when she tried to replicate her own studies.

    Dr. Peterson worked with her and I would think he would say something if that research was just swept under the carpet.

    The science for XMRV looks abysmal as far as panning out as the cause of CFS. This in itself is distressing as many of us were hoping it would be proven. But Science says otherwise.

    Taking AVs is risky business and not the same as popping a pill for a headache. There are short and long term risks that need to be weighed by a doctor. You don't want to be on AV/ARVs when you don't have a retrovirus. It's like playing with fire.

    This is why the insurance companies won't pay for the AIDS medications.

    Unfortunately, there are "advocates" in our community who are trying to bend the science to fit their preconceived notion that XMRV is the cause of CFS. It's easy to get caught up in that but it hinders progress finding the real cause.

    You can't catch XMRV from mice or rats.

    I want to get well, but I also don't want to have more time wasted on this dead horse and want to see some more research into CFS/ME/FM. This is how science works.

    Advocacy is important. Keep writing those letters. More money needs to go into research. I think that should be our focus.

    This is my opinion, I can't speak for others.

    Take care.


  4. gapsych

    gapsych New Member

    I do disagree about Burzynski and yes I saw part of the movie on Netflix but I found it full of conspiracy theories. This guy is making money off of sick people. From the bit I saw the movie appealed to emotion and not logic. There may be a reason why the FDA tried to put him in prison.

    The phrase, "If it's too good to be true, then it probably isn't, comes to mind."

    Here is a fairly credible source about Dr. Burzynski.

    Q Antineoplastons: A Bogus Cancer Treatment?
    What can you tell me about Dr. Stanislaw Burzynski and his antineoplaston treatment for cancer? Does it really work?

    A Answer (Published 7/28/2006)

    Stanislaw Burzynski, M.D., is a Polish-trained physician who immigrated to the United States. He was performing research at Baylor College of Medicine in the 1970s when he isolated natural compounds from urine which he called antineoplastons. He described them as a natural form of cancer protection and began producing synthetic versions in his laboratory. In 1977, Dr. Burzynski opened a clinic in Houston, Texas, and ever since has been treating cancer patients there with his antineoplaston therapy.

    Over the years, Dr. Burzynski claims to have treated more than 8,000 patients, but his success rates are unknown. His Web site states only that he has helped "many" people. If antineoplaston therapy works, we should have scientific studies showing what percentage of patients treated have survived and for how long, as well as evidence showing how Dr. Burzynski's method stacks up against conventional cancer treatment. The only study I know that documents how Dr. Burzynski's patients have fared was done in Canada in 1985. It found that of 36 patients treated, 32 died without showing signs of improvements. One patient died after slight improvement, another died after being stable for a year and, at the time of the study, the other two had widespread cancer.

    The cost of antineoplaston therapy at Dr. Burzynski's clinic reportedly ranges from $30,000 to $60,000 per year. After initial treatment there, patients may be able to continue therapy at home with follow up clinic visits every two months.

    While antineoplastons are said to be nontoxic, reported side effects can be unpleasant and include stomach gas, slight rashes, chills, fever, changes in blood pressure and unpleasant body odor during treatment.

    Until we have credible scientific evidence showing what antineoplastons are, how they act in the body, and what realistic expectations of treatment with them might be, I see no reason for any cancer patient to take this route.

    Andrew Weil, M.D.

    Warning. The following is my rant why I am anti WPI. If you find this upsetting, I would suggest you not read it. Just remember it's my personal opinion which people may agree or disagree. Take from it what you want. We can agree to disagree. :>) **********************************************************************

    I also do not support the WPI. They need to focus on other causes and treatments besides XMRV. I had so much hope for the WPI and XMRV but the science is pretty definitive about it being a contaminant. However, more people are aware about CFS/ME and maybe this will help as far as money for research. Unfortunately, in this economy that money is being stretched pretty thin.

    I'm very disappointed with the new staff that has been hired. Many are into alternative therapies which does not help their credibility among scientist.

    The samples were not blinded in the original WPI study, and their lab has not been tested for contamination using Dr. Singe's methods. They need to prove to the world that their labs are not contaminated.

    Like many people on all sides, I am really looking forward to the BWG's results.

    Take care.


    [This Message was Edited on 06/20/2011]
  5. mbofov

    mbofov Active Member

    Gap - what do you think of the FDA study which found an even higher prevalance of XMRV in CFS patients than WPI did?

    see: http://www.ncbi.nlm.nih.gov/pubmed/20798047

    This study explicits states there was no evidence of mouse DNA contamination.

  6. gapsych

    gapsych New Member

    From the study:

    "The gag and env sequences from CFS patients were more closely related to those of polytropic mouse endogenous retroviruses than to those of XMRVs"

    Lo and Alter found ERV's not XMRV's

    Take care.



    [This Message was Edited on 06/20/2011]
  7. mbofov

    mbofov Active Member

    But the study did find MLV-like virus gag sequnces in 86.5% of patients, compared to 6.8% of healthy controls which sounds very strongly like there is an XMRV-type of virus involved wtih CFS, which is what WPI found, although a different strain of MLV virus. And of course yes, causation is not proven, etc., but I think the high rate in CFS vs. controls is a very hot smoking gun.

    "We examined 41 PBMC-derived DNA samples from 37 patients meeting accepted diagnostic criteria for CFS and found MLV-like virus gag gene sequences in 32 of 37 (86.5%) compared with only 3 of 44 (6.8%) healthy volunteer blood donors. No evidence of mouse DNA contamination was detected in the PCR assay system or the clinical samples. Seven of 8 gag-positive patients tested again positive in a sample obtained nearly 15 y later. In contrast to the reported findings of near-genetic identity of all XMRVs, we identified a genetically diverse group of MLV-related viruses."

    So I don't think WPI should be written off.

    But we probably won't agree on this. Of course more research needs to be done. I would just hate to see it be stifled as it has in the past.

  8. 1937marie

    1937marie New Member

    I had just read the Oslers Web Blog and the is what reminders me of what Defries went through when they even managed to distroy her reputation.If you can't catch XMRV from mice (in part) why do they call it a mouse virus? There has to be more to it but like the monkey virue in HIV it most likely plays a part. I did test positive on the XMRV and know a patient who is taking the HIV meds and stated that she "hadn't felt this well in 30 years.
  9. cfs_info

    cfs_info New Member

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