Really amazing stuff. Any of you guys lawyers? I wonder if we can class action sue the NIH.
I'll sum it up for every one:
1) A study proving Lyme is persistent in monkeys may have been suppressed by the NIH for 12 years. This study was a sister study specifically designed as a quality control study to the notorious Klempner study in humans.
2) Recent comments to this page erupted between a former NIH advisory member (Phyllis Mervine) and THE former head of the NIH Lyme Program Office (Dr. Baker). Mervine asked Phil Baker 12 years ago to change the NIH's statement erroneously concluding that long term antibiotics would not help some patients. He specifically KNEW over a decade ago that these patients would suffer and wanted to change the NIH's false statement.
3) The NIH ignored his request, resulting in the mess we are in today.
4) Even if you dont believe the study was suppressed, the statements between these two scientists certainly indicates that the NIH intentionally misled the public.
Comments:
Phyllis Mervine on February 23, 2012 at 12:24 pm said (to the former head of the NIH Lyme Program Office):
Dr. Baker, when Carl Brenner and I were on the NIH Advisory Panel for the Klempner treatment trials, and you were the NIH Lyme Program Officer, we asked for longer treatment, but you said it would be too expensive. We were afraid the chosen protocol would prove not to be enough for such sick patients, but you assured us that Klempner would only prove that this particular treatment worked or didn’t work – and that it was just the first treatment trial of a series. We believed you.
We were concerned that the study used only subjective methods to evaluate the patients, so we pushed for a parallel monkey trial to give us objective evidence to balance the scale. You funded Philipp’s study but we never saw the results – until now.
After the results of Klempner’s aborted trial were published with such fanfare, the “Clinical alert
” on the NIH website blared, “Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment.” NIH quotes Klempner as saying, “[W]e think it is unlikely that a longer course of treatment or different antibiotic combinations would result in greater improvement than what we found in these studies.”
I asked NIH to change their headline to “90-Day Treatment Inadequate for Chronic Lyme Disease.” They – and you – ignored my request. And now you are asking us to believe that the NIH had nothing to do with the suppression of evidence of persistence for over a decade? What did you do to get these results out in the public? What did you do to control the damaging spin of the Klempner trials that has hurt patients enormously?
Dr. Baker, I have not forgotten anything, especially my shock at seeing the NIH tout conclusions I knew were not supported by the design of the Klempner trials.
But I am not going to argue with your facts, because the point is, we know that long-term antibiotics help some people and until there are better treatments for chronic Lyme, patients should have the right to choose.
If you take antibiotics for your strep throat and then relapse, your doctor is not afraid to give you more. If you have tuberculosis or endocarditis your doctor may prescribe months of treatment, no problem. If you have cancer, your doctor lets you choose between chemotherapy, radiation, surgery – none of them risk-free options. If you have HIV and you die, no one blames your doctor. No, the medical community supports providers who take on the most challenging patients. Why should chronic Lyme be different?
The IDSA-recommended treatment regimen has a 50% failure rate! Two-tier testing misses half the patients! WHO recently condemned a TB test that missed 50% as being unethical. Are you sure you want to stake your reputation on this miserable track record?
The truth is, NIH, CDC, and IDSA have created an atmosphere of fear and intimidation where many doctors will not treat Lyme patients at all. Why risk collegial censure for patients who don’t conveniently recover with the officially recommended treatments, especially when those patients are complicated and so time-consuming? Why risk your license to practice medicine in an area where insurance refuses to reimburse most of what you feel is best for the patient? Our Lyme specialists are true heroes.
As long as NIH continues to use its influence to prevent seriously ill patients from obtaining potentially life-giving treatment, while failing to offer effective alternatives, they are guilty of turning a treatable illness into a chronic one. This is both inhumane and very costly to both the individual and society.
Post Edited (vcast) : 6/9/2013 10:25:20 AM (GMT-6)