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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thats my guess, too. My guess is that Alder et al are testing the CDCs samples. They will naturally find a few infected with XMRV, but not anywhere near the percentages in their own study or the WPIs.
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I think the CDC has drawn their line, preparing for that. Those people with XMRV? They dont have CFS, they have a neurological disease. Who knows, maybe myalgic encephalomyelitis. The NIH, WPI, anyone using the Canadian Consensus Criteria, anyone whose patient cohort is very sick or has immune disorders, they arent studying CFS. Because CFS is a psychogenic disease that can be cured with CBT & GET.
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But they have no reason to believe it would damage or ruin their careers. In a post earlier today, muffin mentioned the Tuskegee Experiment (where poor African-American syphilis patients were prevented from getting treatment), which the CDC kept up for 40 years. It got me to wondering what happened to the people in charge when that came to light, so I did some research.
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In 1968 Public Health Service VD interviewer Peter Buxton wrote a letter to the CDC pointing out the ethical issues of the experiment; it was ignored. A year letter he wrote another letter saying that it could be bad P.R. for the CDC if it came out. That concerned them, and they convened a panel to review the study, and decided to continue it until all the subjects died. The head of the CDC then was Dr David Sencer. Finally Peter Buxton went to the press and in 1972 the story broke. The experiment was ended, there was a huge public outcry, and a congressional investigation. Informed consent rules for clinical studies were revised. The <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-comffice:smarttags" /><st1:country-region w:st="on"><st1lace w:st="on">U.S.</st1lace></st1:country-region> government (that is, taxpayers) paid the survivors compensation, and President Clinton apologized on behalf of the country.
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And what happened to Dr Sencer? Nothing. He continued on as head of the CDC until the 1977 swine flu epidemic that wasnt, when 32 people died and some 500 got guillain-barre from the vaccine. 60 Minutes did a segment showing that he knew it was sometimes a side-effect of the vaccine, but chose to conceal it from the public because they might have decided not to get vaccinated. After that he was fired. He went to work for Pharma for a while and then was appointed Health Commissioner of <st1lace w:st="on"><st1:City w:st="on">New York City</st1:City></st1lace> at the beginning of the AIDS epidemic, when he refused to provide AIDS prevention education or care provisions for patients.
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And where is Dr David Sencer now? Hes retired and serving on wait for itethics committees at <st1lace w:st="on"><st1laceName w:st="on">Emory</st1laceName> <st1laceType w:st="on">University</st1laceType></st1lace>, and teaching freshman medical students. Emory, where the head of the psychiatry department was recently found guilty of taking millions of dollars of dollars in bribes from pharmaceutical companies to peddle their products as CME for doctors, because, he said, the ethical guidelines werent clear.
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So why would anyone at the CDC be concerned about their career if their negligence of ME/CFS patients is shown to be malfeasance? They can always get a job teaching ethics to the next generation of doctors.
Mahy was the guy who diverted funds from CFIDS and Reeves blew the whistle on him.
We shouldn't ever forget Walter Gunn and what he did for us.
William Reeves did not blow the whistle on him, Walter Gunn did. Only after Congressman Jerrold Nadler had gotten a GAO investigation (something like 2 years after Walter Gunn had stepped forward with the information) did William Reeves claim whistleblower status. He "announced" the information that funds were being misappropriated after it had already come out in Hillary Johnson's book Osler's Web, and had been picked up by major news outlets. But by claiming whistleblower status for something that had already come out, Reeves ensured that he couldn't be fired. It was a sleazy move, IMO, not a heroic one.
Walter Gunn was the one with a conscience. He was the one who thought it was wrong that the CDC officials were lying to Congress, misappropriating funds earmarked for CFS research, refusing to do basic research on the disease, ridiculing patients. He recognized that it was corruption and tried first to correct it from within the organization and when that didn't work, ultimately spoke to a journalist. He ended up being edged out of his job, and Reeves took his place.
We shouldn't ever forget Walter Gunn and what he did for us.
Looking at the calibre of the scientists and journals involved on both sides, I think the odds are in favour of XMRV.
The more I learn about the CDC the less faith I have in their ability to do anything relating to CFS, the CDC have already proven themselves incompetent and corrupt when it comes to CFS, they have been part of the problem for 25 years, and this wouldn't suddenly change even if they just happen to be right about XMRV. Cort has a point about the CDC thinking they are right, and Mark has a point about what appears to be "malice" may just be stupidity. They are just enforcing their ideologies which they believe correct, protecting their interests in ways which are questionable but perhaps not qualified as a major conspiracy in the usual sense, and covering themselves just in case they are wrong. Common human behaviour really.
Ixchelkali,
Thanks for the reminder! There have been a few (far too few) who have stood up for CFS patients at significant cost to themselves.
CBS
Hi Thomas, welcome to the forums.
I agree it would be good to have such short overviews of the key information. XMRV Buzz and Phoenix Rising are a good place to find the info but it would be better if it was gathered together.
These links may be helpful...
Neuroskeptic has a decent list of all the XMRV studies to date; the description sometimes lacks a bit of depth and understanding of ME/CFS itself, but the list of studies is clearly presented.
However they seem to be missing the German study that found XMRV in respiratory tracts of immune-compromised patients - it would be worthwhile pointing out these issues to the author as it's a well-balanced and clearly laid-out resource other than these points:
http://neuroskeptic.blogspot.com/2010/02/case-of-missing-retrovirus.html
Virology blog also has lots of info:
http://www.virology.ws/2010/06/30/publication-of-xmrv-papers-should-not-be-blocked
and Slightly Alive is one well-written patient/advocate perspective giving a glimpse into the large backplot to this story:
http://slightlyalive.blogspot.com/2010_01_17_archive.html
The key distinction, which should not really need pointing out but apparently is the elephant in the room that journalists and sceptic bloggers alike tend to avoid mentioning...is that several studies have all found broadly similar 3-7% percentages of XMRV in the background population, and more in their studiy groups, while others have found nothing - no XMRV at all, anywhere - using different detection techniques. These discrepancies apply to the prostate cancer studies as much as they do to the CFS studies, so there is clearly some novel complexity to be explained as to why XMRV can be hard to detect, or conceivably it is geographically restricted, but the studies that have failed to find any XMRV at all - using different techniques and cohorts - can't really be said to refute the CFS/XMRV connection...and yet it tends to be suggested in reports that they do refute it (often quite dishonestly actually) because the headline concept is "negative study" rather than "failed study", which would perhaps be more appropriate...
The best place for details is in the discussion threads about each of the individual studies - for example if you want to find out more about the Groom or Erlwein study, a search for threads with those names in the titles will probably find the thread where the community discussed their reactions to each one. Some of them are monster-long actually...enjoy...
PS: This is another good overview:
http://www.reddit.com/r/science/comments/cn0mj/us_health_officials_obstructing_scientific_process/
I certainly agree with your first lines and if I may, add my view to the latter........
"Common human behavior" may be true in general, but in medical health care this particular kind of behavior would be considered negligence. Doctors are (successfully) sued all the time for missing an obvious diagnosis. Worse (as in our situation), if they deliberately looked the other way, in the face of overwhelming evidence of a disease process, and it causes harm, that can become criminal.
In medical health care, we are held to the strictest of standards, professionalism, and accountability, as we should be. So why would we accept less from our leading national health institutions? Even a "conspiracy to not investigate" (for whatever reason) is negligent behavior in medical health care. I see no valid reason to allow our major health institutions grace for actions that I would be professionally and legally chastised for as a Nurse.
I agree, that's how it should be. I totally support the patient community seeking action, and they may be able to hook some prize catches, but I just have this gut feeling that medical curmudegeons will generally be getting away with whatever has happened over the last 25+ years, largely due to the confusion and apathy and poor standards towards ME/CFS. It may be difficult to prove past negligence. Even caring doctors usually cannot help their patients much beyond diagnosis even if they wanted to. Some other doctors refused to provide even the most basic palliative care and even insulted or humiliated their patients, but I would be surprised if any of these doctors were actually reprimanded for past actions. However, if XMRV pans out and they don't respond adequately due to past habits/attitudes (which I'm guessing will happen), then they will obviously be more culpable.
"You just have to wait 'til some of them die" [...] There will be a 10-15 year period while our medical old curmudegeons wield some power. Most will come around, though. We'll just have to wait while the rest of them die off.
Sometimes it takes a huge threat to security for awareness to change.....like with a fish not understanding it's in water, until it's removed. HIV wasn't taken seriously until it was widespread understood as a lethal threat, easily transmitted, and in the blood supply......Then the medical community and society at large did a dramatic shift in perception. I find it surprising this hasn't happened yet with xmrv.