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Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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Medical research fraud

Discussion in 'XMRV Research and Replication Studies' started by bullybeef, Oct 15, 2010.

  1. bullybeef

    bullybeef Senior Member

    North West, England, UK
    I have put this to members of other forums, but I would like to hear your input.

    A member elsewhere said it is a shame we couldn't sue people for covering up the XMRV/ME link. But could we, or rather the WPI?

    Just Googling MEDICAL RESEARCH FRAUD obviously gives many examples of this occurring, but being in the UK, the following caught my eye:


    What are your thoughts on this? Any legal people out there?

  2. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I can't open a powerpoint presentation on this computer. And i'm not at home, but in Spain, so my life is a bit more physically tough, because i have to go around town a lot (in a car, luckily). So maybe you can give me a short summary of what's in this file.

    I don't know the British or US legal systems. In the German and Swiss criminal codes there is no "special" offence for some sort of medical fraud, unless there is an insurance company involved, so in order for there to be any consequences according to the criminal code the facts of the case would have to fit the general offence of fraud or "Untreue" (this is another offence, don't know how this is called in english, maybe you can look it up, i don't have time now, sorry).

    The offence of fraud requires certain points. But there might be subtle differences between different criminal codes (of different countries).

    First, there has to be an act of deception. This means you have to do something that makes somebody believe something that is not true or distort or suppress the truth. And this has to lead to a wrong "belief" in that other person.
    This fact has to lead to the victim making a disposition that is detrimental to his fortune (in the economic sense).

    This has to be done intentionally and with the goal of achieving a benefit for your or another person's fortune (again in the economic sense, same as above).

    So i find it quite hard to imagine a case where this could apply, in the XMRV question, in the way that you are looking for. But i have not thought about it more than 10 minutes now, so please make comments and say where you think there could be fraud, if you like.
    What i could much more imagine, is the other way round. "Pro-XMRV"-fraud, that people who say they have found XMRV might get accused of having commited fraud. Because people buy tests, treatments, companies pay for collaborations etc. But i have ruled this out, as far as i'm concerned, months ago.
    I see more chance of people commiting offences like libel, slander or then bodily injury or even manslaughter through negligence. (The terms might be wrong, i have to use translation websites to find out the english terms, but i'm sure you know what i mean.)
    And this is only the criminal law aspect of things. To sue someone means you want something from that person according to civil law.

    I don't have time to go into "Untreue" now, because i have to go out.
  3. Jimk


    Cleveland, Ohio
    I want to say what a bad idea I think this is. It would create a chilling effect on scientific research if scientists feared that support for unpopular hypothesis would put them at risk of suit for fraud. We need the most open forum as possible for the widest range of scientific research to hash this out. Journals and institutions are responsible for weeding out fraud. The truth will out in the end.
  4. Victoria

    Victoria Senior Member

    Melbourne, Australia
    I have to agree with Jimk,

    I think the ME/CFS community need all the positive support possible. To charge any of the medical community or scientific researchers with fraud (or coverups) would only create negative publicity. The scientific community would fear publishing or pursuing any line of research due to the fear of litigation & loss of their reputation (apart from the financial or job loss to themselves).

    Instead of pursuing negative action, I believe in supporting positive action.

    Publicise the positive research that is proven through thorough investigation. Encourage money to be spent on human trials & research.

    Gain "friends", not enemies.

    One person alone can do little on his/her own, but develop friends & supporters & many voices can speak & people will listen.

    Create just one enemy & that enemy can spread untold harm & gossip, havoc & mayhem.

    Why would one want to pursue a charge of fraud - only to satisfy their own ego & anger.
  5. muffin

    muffin Senior Member


    Let us all speak with our "inside voices" since it has worked so well for 30 years.

    No. Beat on them. Beat on all of them. That's what the HIV/AIDs people did and billions of dollars later, they are alive and well - and we are still locked in our sick bodies, bedbound and housebound.

    THEY have been the enemies for decades. Recognize your enemies and fight them.
    We have been "too nice for too long" - now we fight.

    Sleeping up to 18 hours a day in bed feeling like a have a terrible virus is not making me an optimistic person.
  6. LJS

    LJS Insert Witty Comment Here

    East Coast, USA
    I just wanted to chime in, agree with Jimk, Victoria, and add support against anything like this. We need to look forward, not backwards; educated and get researchers interested our illness not push them away; and make friends in high places. Trying to pursue legal measure will do none of this, turn many researchers away from touching CFS, and ultimately keep us sick longer then necessary.

    This whole idea that researchers are intentionally hiding information on CFS is completely ridiculous. The reason not has been done on CFS is the complexity of the disease, complexity in diagnoses (no simple blood test), and simple arrogance among many researchers. This is found everywhere in science, researchers have not looked hard enough for the cause of our illness and simple assume it must be physiological because they can not preform a simple test and find a issue. It would be a huge deal for any researcher to find something like XMRV in CFS patients and they are not going to cover up a finding like that. They would want the fame of finding it. Many illness started out with researchers and doctors just assuming the patients where crazy for example: lupus, Parkinson's, MS, fibromyalgia, h pylori (researchers though the founder not the patients were crazy on this one) in all of these illness nothing was being covered up and no "fraud" was being commented. It was just simple arrogance.

    I think this thread should be locked, I do not want new comers visiting the forum thinking a majority of CFS believe in these ridicules conspiracy and government cover up theories.
  7. xrayspex

    xrayspex Senior Member

    bullybeef I appreciate your sentiments. there is a thread somewhere here about a possible lawsuit on related issues so obviously there are opinions all over the place on both sides of thse sort of things.

    Reading "Osler's Web" or watch films "and the band played on" "the insider" "a civil action" etc yea its obvious corrupt stuff goes down

    how though, to best move forward now? I am not sure.
  8. xrayspex

    xrayspex Senior Member

  9. IamME

    IamME Too sick for an identity


    You should really read up on the history of ME outbreaks, read Margaret Williams and Prof Hooper (eg Magical Medicine). Then contrast and compare to the claims and actions of the MRC, the BMJ and the CDC in the US.

    How do you explain the missed diagnosis of ME at Lake Tahoe? How do you explain the disappearance of inflammation and just about any other disease findings, even clincial signs, over the past twenty years, according the the official stance? How do you explain the BMJ's "preference" for not publishing biomedical studies, which a group of British doctors actually complained about? How do you explain the literature being censored for efforts like the CMO's report and the NICE guidelines, preferentially for psychobabbles? Just some freak act of nature was it? Was it just random entropy when Peter White informed the NICE guideline group neuropathic pain and weight loss don't occur(!) in ME?

    How do you explain the arrogant, biased soapboxing attacks from "1000 per cent" McClure and others on XMRV/WPI, or the CDC managing to get away with redefining CFS, again, into childhood abuse and emotional stress? *Someone* has decided the evidence should be thrown out, while CBT/GET ushered in, and vociferously promoted at every opportunity despite that the "bad" studies' data don't even support it. It's those studies which have the ludicrous claims and fanstastical discourse, not their critics.

    There's some sobering stuff on the generally poor quality of research (not even about ME) from a well-respected Professor Ioannidis, which Margaret Williams relates to the corrupt, "policy-based" PACE trial.

    The ME community vigorously tries to support biomedical research, various petitions have been produced effectively begging the govt for biomedical research, so, to once AGAIN, blame suffferers for "making things worse" is a bit off. Various reviewers have noted how "poor" the general quality of the research in the field is, that's not something sufferers have made up and is something that is having a real effect on research, perception and policy and something that motivates people to demand better research, not just "up the number" which is perfectly reasonable. A judifical review was requested of the NICE guidelines and that was perfectly reasonable as well (shame about the unethical lawyers sabotaging it).

    Time and again we get the myth repeated: if only pwMEs were nicer people (imputing that we're not), bad things would stop happening to us: "Just world" bullshit in a nutshell, a means of oppression throughout the ages. I think some people really live in a fantasy world where researchers spend their time hunched over their PCs scouring ME forums for offense rather than, er, actually doing research. The people who are root resposible for this meme are the psychs themselves, with their solipsism spreading campaign, and people fall for it by doing their work and spreading the muck.

    Saying ignore the bad research and just encourage the good, sounds all nice and fuzzy but it doesn't work that way, research is triggered by previous research and where's the a vast mountain of irresponsible and fraudulent crap it's a seriously damaging obstacle that can't be ignored. It's not just criticised by patients but by researchers and specialists in the field like Professors Jason, hooper, Klimas (a bit) and of course Dr Mikovits.

    And what are you going to say when someone asks you why you're not exercising yourself back to health as paper/expert/journal/clinic x's "evidence" says you should? Or treats you as if you really are a PTSD child abuse survivor with an abusive "neurotic" mum? Criticism is at the very least implicit in any reasoned reponse you give, but the more you need to explain your disability and why you're "choosing not to get well" the more overt the criticism will need to be. We live in a political world, not just a scientific one (in fact politics is the hugest influence by oeders of magnitude) so, as Dr Peterson said, we need political solutions as well as scientific ones (just as with AIDS history). It's also going to be important one day to be able to show the garbage wasn't produced with your consent/encouragment, which the psychs and their allies like the compromised charities sometimes contradictorily like to claim as well.

    Sufferers have every bit of right to make as loud a fuss as possible about corrupt puppets like the MRC, fake research like PACE, and defend themselves against the pogrom of psycholigisation. If no-one speaks out on issues of definition and selection, there will be yet more garbage results. Even biomedical researchers are not immune to these problems as it may be all their background info, including case selection, comes from the psychs. The CBT evangelists' next move will be to try and square the circle by combining CBT/GET with biomedical stuff rather than just rolling over -- in fact that's already happening.

    I suppose some USers will again say that everything is just fine in the US and this is only an isolated Brit or European problem so...
  10. Enid

    Enid Senior Member

    Can't really see a conspiracy as such - more the intransigence of some of our weighty Institutions in the UK unwilling to back down on previously (and ignorant) decisions on the matter. Sort of we have spoken and must therefore be correct. That raises the issue of why their decisions are blindly accepted especially when they have ignored global research findings all these years. But presumably "vested interests" are more than happy to go along. For "weighty Institutions" add overweighty individuals appointed as Advisers for one reason or another by governments. Does look a bit murky.
  11. IamME

    IamME Too sick for an identity

    What a bizarre and unpleasant claim. The reasons for pursueing anything legally are usually because it's the only way to stop the wrongdoer and for any potential reparation, and to set down some precedent. Fraud is illegal in any other domain, why should medicine and research be above the law?

    Laws exist precisely to avoid mob rule. The only "egos" you should be worried about are those who inflict great suffering on extremely ill people with the arrogant impunity of an utter conviction in their rightness, and knowing they can get away with it.

    Rather than bemoaning talk of legality, you should be wondering why medicine and particulalry psychiatry has got away with burying their horrific treatment of various groups down through the generations. Early AIDS compaigners talked of not wanting to let it happen again, I'd echo that sentiment, I wish I could make it happen too.

    The only way some pwME are able to assert their very rights, to benefits or care, are through legal recourse. It's bad enough it's up to the most sickest, isolated and vulnerable to have to do this, so why not taking the fight higher up?
  12. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    I found it ironic in the extreme that the British Medical Journal, with their editoral bias towards articles in support of psychological and rehabilitation strategies for ME, (even shockingly, even after one young bedbound woman with ME recently committed suicide in desperation at the lack of any genuine medical help), should be lecturing on scientific fraud.

    They have done next to nothing in recent years to publish biomedical research papers about the illness, but instead favoured some rather snarky 'commentaries' with thinly veiled jibes at 'CFS' patients when the first XMRV negative papers came out.

    They have done nothing but abuse their rather privileged position, as far as I can see. Thank God my GP is far too busy to read it most of the time. I am embarrassed to be British.
  13. muffin

    muffin Senior Member

    Sorry Jim but...

    The CDC has done 30 years of damage to us by not doing real science and terrifying the researchers and doctors into NOT believing in ME/CFS for the very fear that they too will be labeled as nuts, quacks and open to law suits. So that issue has already been in effect for three decades.
    See any real research on ME/CFS previous to the WPI studies? No, you didn't. You saw psychobabble and nothing more. And that psychobabble damaged research and it damaged you and millions of others like you. There has been NO "open forum" for scientific reseearch on ME/CFS and that has been the major problem for 30 years. One organization here in the US - the CDC and one small group of people in the UK - Weasel and compnay, have called the shots on what every single researcher and physician would be allowed to believe and treat.

    In the state I live in doctors will not even write down in your chart that you have CFS. My Rheum wrote down "fatiguing illness". He said there was no proof of CFS and he was not going to put that down as a diagnosis. I know why he did that - CYA. In my state they push any doctor out of the state and over the border if they dare speak of CFS or treat it in any way. So where is the open dialogue for ME/CFS? If my husband's and my tests come back from VIPDX as positive for Retrovirus WHO is going to treat us?

    I have been terribly sick for 16 years and my husband has been sick for 6 years with CFS. I sleep 12 to 18 hours a day, leave the house about once a week and my poor husband is on the couch unable to do really anything at all. Why did this happen? Had the CDC not damaged the Defreitas study in the 1980s and then NIH killed off funding for further Retrovirus research, quite possibly both he and I would NOT be sick. Quite possibly millions of others with other diseases and cancers would not have been sick and died.

    So you see, there was NO open forum for exchange of ideas because there was extremem control over the ME/CFS disease and any real research done on it. No funding for research and grants, nothing but a waste of millions to ABT Associates and Emory Uni Mind-Body for psychobabble to ensure that we sick stay sick and are demeaned and researchers and doctors made terrified to deal with us or do any research on us. No money for a psychosomatic illness brought on by stress and abusive parents? It worked very well for 30 years.

    Open your mouth to the right people. If you don't want to discuss the retrovirus then at least force the issue of getting ME/CFS funding for research and clinical trials on the medicaitons already out there and available. You don't need to beat on the researchers. The only researcher I made a comment to was McClure and it was actually out of the kindness of my heart. Really. I told her that getting into bed with Wessely was going to destroy her reputation and career and that did she notice how other researchers who he dealt with never dealt with him again? I gave her a head''s up on what dealing Wessely would do to her reputation and career - I did not lambast her for her research and conclusions. I don't beat on researchers anyway. They are not my targets - my targets are those with the MONEY FOR RESEARCH AND CLINICAL TRIALS. Then, with that money there is actually something to discuss in a true open forum.

  14. muffin

    muffin Senior Member

    40 year Tuskegee syphilis experiment and the Non-consensual experiments in Guatemala

    Originally Posted by LJS - This whole idea that researchers are intentionally hiding information on CFS is completely ridiculous. ...
    I think this thread should be locked, I do not want new comers visiting the forum thinking a majority of CFS believe in these ridicules conspiracy and government cover up theories.

    OK. When I was first reading about conspiracy theories and CFIDS years ago I too thought it was all just crazy stuff. But, when the information was put together, all the weird pieces from the US and the UK, I could conclude nothing else but that there was indeed conspiracy at work with regards to CFS research, origin, etc. Americans don't want to believe that our country is capable of being evil like this. I didn't want to believe it either. I supported the Federal government as a contractor, but...when you look at the actions of the CDC and other Fed health orgs during the last three decades and then look over at all that has/is going on in the UK, you can really only conclude one thing: somebody(ies) have/are up to no good with ME/CFS. Have you read Hillary Johnson's Osler's Web? You can read the major points on her website at www.oslersweb.com -

    I believe that Dr. Collins (NIH) did publicly state that there was "40 deliberate infections" that are being investigated, reaching up to the White House. That's not theory - not when the head of the NIH states publicly that there are 40 other "deliberate infections".

    Let us review what the US Public Health organizations have done to their own population in the South during a 40 year period starting before WWII and running on until 1972. Then let's look at what the US Public Health orgs did AFTER WWII and the horrors of Nazi Germany human experimentation (1946 to 1948) in Guatemala:

    So, conpiracy theories must remain on this site. They are part of the picture even though none of us wants to believe our country's are capable of evil. Actually, it really is just a few evil people within our governments, like Reeves et al at the CDC and the Weasel, et al in the UK.

    In the WIKI below it really was only a small group of people doing the evil. However, in the Tuskegee experiment it took 40 years before someone came forward and tried to get people to listen. I believe it took two years before he got someone to listen and look into this situation. The same man that ran the Guatemala experiment was also running the Tuskegee experiement as well. And until the day he died, he saw nothing wrong in his actions.

    So, it takes one or just a few people to do major damage and destruction and not a whole government. And we see that with tiny groups or individuals in terrorism and we are seeing it again and again in basic research, medicine, etc. Anywhere humans and their egos and money are involved.

    This is not a whack job conspiracy thing - sadly it is all probably very true. So, no, I don't believe this topic of conspiracy theories will be closed. It is part of the politics and history of CFS/ME, retrovirus research, and anything that has to do with human beings.

    Tuskegee syphilis experimentFrom Wikipedia, the free encyclopedia See also: Human experimentation in the United States

    A doctor draws blood from one of the Tuskegee test subjects

    The Tuskegee syphilis experiment[1] (also known as the Tuskegee syphilis study or Public Health Service syphilis study) was a clinical study conducted between 1932 and 1972 in Tuskegee, Alabama, by the U.S. Public Health Service. Investigators recruited 399 impoverished African-American sharecroppers, who were already infected with syphilis, for research related to the natural progression of the untreated disease.[1]

    The Public Health Service, working with the Tuskegee Institute, began the study in 1932. Nearly 400 poor black men with syphilis from Macon County, Ala., were enrolled in the study. For participating in the study, the men were given free medical exams, free meals and free burial insurance. They were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for "bad blood," a local term used to describe several illnesses, including syphilis, anemia and fatigue.

    The 40-year study was controversial for reasons related to ethical standards, primarily because researchers failed to treat patients appropriately after the 1940s validation of penicillin as an effective cure for the disease. Revelation of study failures led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent (with exceptions possible for U.S. Federal agencies which can be kept secret by Executive Order[2]), communication of diagnosis, and accurate reporting of test results.[3]

    By 1947 penicillin had become the standard treatment for syphilis. Choices might have included treating all syphilitic subjects and closing the study, or splitting off a control group for testing with penicillin. Instead, the Tuskegee scientists continued the study, withholding penicillin and information about it from the patients. In addition, scientists prevented participants from accessing syphilis treatment programs available to others in the area. The study continued, under numerous supervisors, until 1972, when a leak to the press resulted in its termination. Victims included numerous men who died of syphilis, wives who contracted the disease, and children born with congenital syphilis.[4]

    The Tuskegee Syphilis Study, cited as "arguably the most infamous biomedical research study in U.S. history,"[5] led to the 1979 Belmont Report and the establishment of the Office for Human Research Protections (OHRP).[6] It also led to federal regulation requiring Institutional Review Boards for protection of human subjects in studies involving human subjects. The Office for Human Research Protections (OHRP) manages this responsibility within the US Department of Health and Human Services (HHS).[7]

    Contents [hide]
    1 History
    1.1 Study clinicians
    1.2 Study details
    2 Non-consensual experiments in Guatemala
    3 Study termination
    4 Aftermath
    5 Ethical implications
    6 In popular culture
    7 See also
    8 References
    9 Further reading
    9.1 Primary sources
    9.2 Secondary Sources
    10 External links

    [edit] History
    [edit] Study clinicians
    “ For the most part, doctors and civil servants simply did their jobs. Some merely followed orders, others worked for the glory of science. ”
    — Dr John Heller, Director of the Public Health Service's Division of Venereal Diseases[8]

    Some of the Tuskegee Study Group clinicians. Dr. Reginald D. James (third to right), a black physician involved with public health work in Macon County, was not directly involved in the study. Nurse Rivers is on the left.
    Dr. Taliaferro Clark
    Dr. Oliver WengerThe venereal disease section of the U.S. Public Health Service (PHS) formed a study group at its national headquarters. Dr. Taliaferro Clark was credited with its origin. His initial goal was to follow untreated syphilis in a group of black men for 6 to 9 months, and then follow up with a treatment phase. When he understood the intention of other study members to use deceptive practices, Dr. Clark disagreed with the plan to conduct an extended study.[clarification needed] He retired the year after the study began.

    Representing the PHS, Clark had solicited the participation of the Tuskegee Institute (a historically black college (HBCU) that was well-known in Alabama) and of the Arkansas regional PHS office. Dr. Eugene Dibble, an African American doctor, was head of the John Andrew Hospital at the Tuskegee Institute. Dr. Oliver C. Wenger, a caucasian, was director of the regional PHS Venereal Disease Clinic in Hot Springs, Arkansas. He and his staff took a lead in developing study procedures.

    Wenger and his staff played a critical role in developing early study protocols. Wenger continued to advise and assist the Tuskegee Study when it turned into a long-term, no-treatment observational study.[9]

    Dr. Raymond H. Vonderlehr was appointed on-site director of the research program and developed the policies that shaped the long-term follow-up section of the project. For example, he decided to gain the "consent" of the subjects for spinal taps (to look for signs of neurosyphilis) by depicting the diagnostic test as a "special free treatment". Vonderlehr retired as head of the venereal disease section in 1943, shortly after penicillin had first been shown to be a cure for syphilis.

    Nurse Eunice Rivers, an African-American trained at Tuskegee Institute who worked at its affiliated John Andrew Hospital, was recruited at the start of the study. Dr. Vonderlehr was a strong advocate for her participation, as she was the direct link to the community. During the Great Depression of the 1930s, the Tuskegee Study began by offering lower class African Americans, who often could not afford health care, the chance to join "Miss Rivers' Lodge". Patients were to receive free physical examinations at Tuskegee University, free rides to and from the clinic, hot meals on examination days, and free treatment for minor ailments.

    As the study became long term, Nurse Rivers became the chief person with continuity. Unlike the changing state of national, regional and on-site PHS administrators, doctors, and researchers, Rivers stayed at Tuskegee University. She was the only study staff person to work with participants for the full 40 years. By the 1950s, Nurse Rivers had become pivotal to the study—her personal knowledge of the subjects enabled maintenance of long-term follow up. In the study's later years, Dr. John R. Heller led the national division.

    By the late 1940s, doctors, hospitals and public health centers throughout the country routinely treated diagnosed syphilis with penicillin. In the period following World War II, the revelation of the Holocaust and related Nazi medical abuses brought about changes in international law. Western allies formulated the Nuremberg Code to protect the rights of research subjects. No one appeared to have reevaluated the protocols of the Tuskegee Study according to the new standards.

    In 1972 the Tuskegee Study was brought to public and national attention by a whistleblower, who gave information to the Washington Star and the New York Times. Heller of PHS still defended the ethics of the study, stating: "The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people."[10]Dr. Raymond Vonderlehr
    Dr. John Heller
    Dr. Eugene Dibble
    Eunice Rivers, nurse and study co-ordinator

    [edit] Study details

    Subject blood draw, circa 1953A Norwegian in 1928 had reported on the pathologic manifestations of untreated syphilis in several hundred White males. This study is known as a retrospective study since investigators pieced together information from the histories of patients who had already contracted syphilis but remained untreated for some time.

    Subjects talking with study coordinator, Nurse Eunice RiversThe Tuskegee study group decided to build on the Oslo work and perform a prospective study to complement it. In the earlier phases of the study this was not inherently unethical since there was nothing the investigators could do therapeutically at the time. Researchers could study the natural progression of the disease as long as they did not harm their subjects. They reasoned that the knowledge gained would benefit humankind, however, it was determined afterward that the doctors did harm their subjects, by depriving them of appropriate treatment that could have been administered once it had been discovered. The study was characterized as "the longest non-therapeutic experiment on human beings in medical history."[11]

    The US health service Tuskegee study began as a clinical trial of the incidence of syphilis in the Macon County population. Initially, subjects were studied for six to eight months and then treated with contemporary methods including Salvarsan, mercurial ointments, and bismuth. These methods were, at best, mildly effective. The disadvantage that these treatments were all highly toxic was balanced by the fact that no other methods were known. The Tuskegee Institute participated in the study, as its representatives understood the intent was to benefit public health in the local poor population.[12] The Tuskegee University-affiliated hospital effectively loaned the PHS its medical facilities and other predominantly black institutions and local black doctors participated as well. The Rosenwald Fund, a major Chicago-based philanthropy devoted to black education and community development in the South, provided financial support to pay for the eventual treatment of the patients. Study researchers initially recruited 399 syphilitic Black men, and 201 healthy Black men as controls.

    Continuing effects of the Stock Market Crash of 1929 and the beginning of the Great Depression led the Rosenwald Fund to withdraw its offer of funding. Study directors issued a final report as they thought this might mean the end of the study once funding to buy medication for the treatment phase of the study was withdrawn.

    Medical ethics considerations were limited from the start and rapidly deteriorated. To ensure that the men would show up for the possibly dangerous, painful, diagnostic, and non-therapeutic spinal taps, the doctors sent the 400 patients a misleading letter titled "Last Chance for Special Free Treatment" (see insert). The study also required all participants to undergo an autopsy after death in order to receive funeral benefits. After penicillin was discovered as a cure, researchers continued to deny such treatment to many study participants. Many patients were lied to and given placebo treatments so researchers could observe the full, long term progression of the fatal disease.[12]

    Drawing blood from subject for testing.The Tuskegee Study published its first clinical data in 1934 and issued their first major report in 1936. This was prior to the discovery of penicillin as a safe and effective treatment for syphilis. The study was not secret since reports and data sets were published to the medical community throughout its duration.

    During World War II, 250 of the subject men registered for the draft. These men were consequently diagnosed as having syphilis at military induction centers and ordered to obtain treatment for syphilis before they could be taken into the armed services.[13]

    PHS researchers prevented them from getting treatment, thus depriving them of chances for a cure, service to the nation, and gaining the benefit of the G.I. Bill for education, passed after the war. At the time, the PHS representative was quoted as saying: "So far, we are keeping the known positive patients from getting treatment."[13]

    By 1947 penicillin had become standard therapy for syphilis. The US government sponsored several public health programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate venereal disease came to Macon County, study researchers prevented their patients from participating.[13]

    By the end of the study in 1972, only 74 of the test subjects were alive. Of the original 399 men, 28 had died of syphilis, 100 were dead of related complications, 40 of their wives had been infected and 19 of their children were born with congenital syphilis.

    [edit] Non-consensual experiments in Guatemala
    Main article: Syphilis experiments in Guatemala
    In October 2010 it was revealed that in Guatemala, the project went even further. It was reported that from 1946 to 1948, American doctors deliberately infected prisoners, soldiers, and patients in a mental hospital with syphilis and, in some cases, gonorrhea, with the cooperation of some Guatemalan health ministries and officials. A total of 696 men and women were exposed to syphilis without the informed consent of the subjects. When the subjects contracted the disease they were given antibiotics though it is unclear if all infected parties were cured.[14] Wellesley College's historian Susan Reverby made the discovery while examining archived records of John Charles Cutler, a government researcher involved in the now infamous Tuskegee study.[15]

    In October 2010, the U.S. formally apologized to Guatemala for conducting these experiments.

    [edit] Study termination

    Peter Buxtun, a PHS venereal disease investigator, the "whistle-blower".
    Group of Tuskegee Experiment test subjects
    Charlie Pollard, survivor
    Herman Shaw, survivorIn 1966 Peter Buxtun, a PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases to express his concerns about the ethics and morality of the extended Tuskegee Study. The Center for Disease Control (CDC), which by then controlled the study, reaffirmed the need to continue the study until completion; i.e., until all subjects had died and been autopsied. To bolster its position, the CDC sought, and gained support for the continuation of the study, from local chapters of the National Medical Association (representing African-American physicians) and the American Medical Association (AMA).

    In 1968 William Carter Jenkins, an African-American statistician in the PHS, part of the Department of Health, Education, and Welfare (HEW), founded and edited The Drum, a newsletter devoted to ending racial discrimination in HEW. The cabinet-level department included the CDC. In The Drum, Jenkins called for an end to the Tuskegee Study. He did not succeed; it is not clear who read his work.[16]

    Buxtun finally went to the press in the early 1970s. The story broke first in the Washington Star on July 25, 1972. It became front-page news in the New York Times the following day. Senator Edward Kennedy called Congressional hearings, at which Buxtun and HEW officials testified. As a result of public outcry the CDC and PHS appointed an ad hoc advisory panel to review the study. It determined the study was medically unjustified and ordered its termination. As part of the settlement of a class action lawsuit subsequently filed by the NAACP, the U.S. government paid $9 million (unadjusted for inflation) and agreed to provide free medical treatment to surviving participants and to surviving family members infected as a consequence of the study.

    [edit] Aftermath
    In 1974 Congress passed the National Research Act and created a commission to study and write regulations governing studies involving human participants. On May 16, 1997, President Bill Clinton formally apologized and held a ceremony for the Tuskegee study participants: "What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry ... To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist."[17] Five of the eight remaining study survivors attended the White House ceremony.

    The Tuskegee Syphilis Study significantly damaged the trust of the black community toward public health efforts in the United States.[18] As a result, many distrust the medical community and are reluctant to participate in programs such as organ donation. The study may also have contributed to the reluctance of many poor black people to seek routine preventive care.[19] Two groups of researchers at Johns Hopkins debated the effects that the Tuskegee Study has had on black Americans and their willingness to participate in medical trials.[20] Distrust of the government because of the study contributed to persistent rumors in the black community that the government was responsible for the HIV/AIDS crisis by introducing the virus to the black community."

    In 1990, the Southern Christian Leadership Conference conducted a survey among 1056 African American Church members in five cities. They found that 34% of the respondents believed that AIDS was an artificial virus, 35% believed that AIDS is a form of genocide, and 44% believed that the government is not telling the truth about AIDS."[10]

    [edit] Ethical implications
    This section requires expansion.

    Depression-era U.S. poster advocating early syphilis treatment. Although treatments were available, participants in the study did not receive them.After penicillin was found to be an effective treatment for syphilis, the study continued for another 25 years without treating those suffering from the disease. After the study and its consequences became front-page news, it was ended in a day.[21] The aftershocks of this study, and other human experiments in the United States, led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the National Research Act. The latter requires the establishment of institutional review boards (IRBs) at institutions receiving federal support (such as grants, cooperative agreements, or contracts).

    [edit] In popular culture
    Dr. David Feldshuh wrote a stage play in 1992 based on the history of the Tuskegee study, titled Miss Evers' Boys. It was a runner-up for the 1992 Pulitzer Prize in drama.[22] In 1997 it was adapted for an HBO made-for-TV movie. The HBO adaptation was nominated for eleven Emmy Awards,[23] and won in four categories.[24]
    Don Byron's debut album, Tuskegee Experiments, is named after the study.[25]
    Marvel Comics' limited series Truth: Red, White & Black reinterpreted the Tuskegee Experiment as part of the Weapon Plus program.[26]
    Carlo Boccadoro's composition Bad Blood, takes inspiration from the tragic facts and discrimination related to the study.[27]
    [edit] See also
    Human experimentation in the United States
    Human subject research
    World Medical Association
    International Conference on Harmonisation for Registration of Pharmaceuticals
    Declaration of Geneva
    Declaration of Helsinki
    Operation Whitecoat
    [edit] References
    1.^ a b "Tuskegee Study - Timeline". NCHHSTP. CDC. 2008-06-25. http://www.cdc.gov/tuskegee/timeline.htm. Retrieved 2008-12-04.
    2.^ "Code of Federal Regulations Title 45 Part 46 Protections of Human Subjects 46.1.1(i)" (PDF). U.S. Department of Health and Humand Services. 2009-01-15. http://www.hhs.gov/ohrp/documents/OHRPRegulations.pdf. Retrieved 2010-02-22.
    3.^ "Final Report of the Tuskegee Syphilis Study Legacy Committee". Tuskegee Syphilis Study Legacy Committee. 1996-05-20. http://www.hsl.virginia.edu/historical/medical_history/bad_blood/report.cfm. Retrieved 2008-12-04.
    4.^ Heller J (1972-07-26). "Syphilis Victims in U.S. Study Went Untreated for 40 Years; Syphilis Victims Got No Therapy". New York Times (Associated Press). http://select.nytimes.com/gst/abstract.html?res=F40616F6345A137B93C4AB178CD85F468785F9. Retrieved 2008-12-04.
    5.^ Katz RV, Kegeles SS, Kressin NR, et al. (November 2006). "The Tuskegee Legacy Project: willingness of minorities to participate in biomedical research". J Health Care Poor Underserved 17 (4): 698–715. doi:10.1353/hpu.2006.0126. PMID 17242525. PMC 1780164. http://muse.jhu.edu/cgi-bin/resolve...-2089&volume=17&issue=4&spage=698&aulast=Katz.
    6.^ Office for Human Research Protections (OHRP) (2005-06-23). "Protection of Human Subjects". Title 45, Code of Federal Regulations, Part 46. US Department of Health and Human Services. http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm. Retrieved 2008-12-04.
    7.^ "Office for Human Research Protections". Department of Health and Human Services. 2008-09-28. http://www.hhs.gov/ohrp/. Retrieved 2008-12-04.
    8.^ Cockburn, Alexander; Jeffrey St. Clair (1998). Whiteout: The CIA, Drugs and the Press. London: Verso. pp. 67. ISBN 1859841392. http://books.google.com/books?id=s5...&hl=en&sa=X&oi=book_result&resnum=2&ct=result.
    9.^ DiClemente RJ, Blumenthal DS (2003). Community-based health research: issues and methods. New York: Springer Pub. pp. 50. ISBN 0-8261-2025-3. http://www.google.co.in/books?id=KN_-9lwSI5oC.
    10.^ a b "Research Ethics: The Tuskegee Syphilis Study". Tuskegee University. http://www.tuskegee.edu/Global/Story.asp?s=1207598. Retrieved 2008-12-04.
    11.^ Jones J (1981). Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press. ISBN 0029166764.
    12.^ a b Parker, Laura (1997-04-28). "'Bad Blood' Still Flows In Tuskegee Study". USA Today. http://www.tuskegee.edu/global/Story.asp?s=1209852. Retrieved 2008-12-04.
    13.^ a b c "Doctor of Public Health Student Handbook" (PDF). University of Kentucky College of Public Health. 2004. pp. 17. http://www.ukcph.org/Portals/0/DoctorofPublicHealth/Dr.P.HStudentHandbook.pdf.
    14.^ Chris McGreal (2010-10-01). "US says sorry for 'outrageous and abhorrent' Guatemalan syphilis tests Experiments in 1940s saw hundreds of Guatemalan prisoners and soldiers deliberately infected to test effects of penicillin". Guardian UK (Guardian News and Media Limited). http://www.guardian.co.uk/world/2010/oct/01/us-apology-guatemala-syphilis-tests. Retrieved 2010-10-01.
    15.^ Laura Neegaard (2010-10-02). "US apologizes for '40s syphilis study in Guatemala". Associated Press (Forbes magazine). http://www.guardian.co.uk/world/2010/oct/01/us-apology-guatemala-syphilis-tests. Retrieved 2010-10-02.
    16.^ Bill Jenkins left the PHS in the mid-1970s for doctoral studies. In 1980, he joined the CDC Division of Sexually Transmitted Diseases, where he managed the Participants Health Benefits Program that ensured health services for survivors of the Tuskegee Study.
    17.^ "Remarks by the President in apology for study done in Tuskegee". Office of the Press Secretary, The White House. 1997-05-16. http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html. Retrieved 2009-09-06.
    18.^ Thomas SB, Quinn SC (November 1991). "The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community". Am J Public Health 81 (11): 1498–505. doi:10.2105/AJPH.81.11.1498. PMID 1951814. PMC 1405662. http://www.ajph.org/cgi/pmidlookup?view=long&pmid=1951814.
    19.^ Cohen E (2007-02-26). "Tuskegee's ghosts: Fear hinders black marrow donation". CNN. http://www.cnn.com/2007/HEALTH/02/07/bone.marrow/index.html. Retrieved 2008-12-04.
    20.^ "Did Tuskegee damage trust on clinical trials?". CNN. 2008-03-17. Archived from the original on 2008-06-13. http://web.archive.org/web/20080613...08/HEALTH/03/17/clinical.trials.ap/index.html. Retrieved 2008-12-04.
    21.^ Chadwick A (2002-07-25). "Remembering the Tuskegee Experiment". NPR. http://www.npr.org/programs/morning/features/2002/jul/tuskegee/. Retrieved 2008-12-04.
    22.^ "The Pulitzer Prizes : Drama". The Pulitzer Prizes -- Columbia University. http://www.pulitzer.org/bycat/Drama.
    23.^ Geddes, Darryl (1997-09-11). "HBO's adaptation of Feldshuh's play Miss Evers' Boys is up for 12 Emmys". Cornell Chronicle. http://www.news.cornell.edu/Chronicle/97/9.11.97/Emmys.html.
    24.^ "Awards for Miss Evers' Boys". IMDb. http://www.imdb.com/title/tt0119679/awards.
    25.^ http://www.nonesuch.com/albums/tuskegee-experiments
    26.^ Black in Action, Entertainment Weekly.
    27.^ http://http://www.sentieriselvaggi.org/multimedia/audio
    [edit] Further reading
    [edit] Primary sources
    Caldwell, J. G; E. V. Price, et al. (1973). "Aortic regurgitation in the Tuskegee study of untreated syphilis". J Chronic Dis 26 (3): 187–94. doi:10.1016/0021-9681(73)90089-1. PMID 4695031.
    Hiltner, S. (1973). "The Tuskegee Syphilis Study under review". Christ Century 90 (43): 1174–6. PMID 11662609.
    Kampmeier, R. H. (1972). "The Tuskegee study of untreated syphilis". South Med J 65 (10): 1247–51. PMID 5074095.
    Kampmeier, R. H. (1974). "Final report on the "Tuskegee syphilis study". South Med J 67 (11): 1349–53. PMID 4610772.
    Olansky, S.; L. Simpson, et al. (1954). "Environmental factors in the Tuskegee study of untreated syphilis". Public Health Rep 69 (7): 691–8. PMID 13177831.
    Rockwell, D. H.; A. R. Yobs, et al. (1964). "The Tuskegee Study of Untreated Syphilis; the 30th Year of Observation". Arch Intern Med 114: 792–8. PMID 14211593.
    Schuman, S. H.; S. Olansky, et al. (1955). "Untreated syphilis in the male negro; background and current status of patients in the Tuskegee study.". J Chronic Dis 2 (5): 543–58. doi:10.1016/0021-9681(55)90153-3. PMID 13263393.
  15. bullybeef

    bullybeef Senior Member

    North West, England, UK
    Sorry to the users whom seem to believe I have started this thread as a general feeling amongst the entire ME community. It is quite clearly on the contrary.

    And it is ironic that some believe me to be a 'new comer' when I actually outdate their existence of PR!

    For the people whom couldn't open the files, one of the documents I posted gives the following list in answer to the question: What Is Fraud:

    Fabrification: Invention of data or cases
    Falsification: Wilful distortion of data
    Ignoring outliers
    Not admitting that some data are missing.
    Post hoc analyses that are not admitted
    Not including data on side effects in a clinical trial
    Plagiarism: Copying of data or papers
    Stealing ideas
    Redundant publication
    Gift authorship.
    Not attributing other authors.
    Not publishing research
    Not disclosing a conflict of interest

    Now, I certainly think the majority of authors of recent negatives study have a conflict of interests; it would be very naive to think otherwise.

    However, since I have posted this suggestion, which it what it was, I wasn't proclaiming a revolt, I have become a little more pragmatic. If I have I thought of this route, I am sure others have, such as the WPI.

    But I will leave you with an example; I noticed the following recent negative study:

    See: http://chronicfatigue.about.com/b/2...ue-syndrome-more-studies-more-controversy.htm

    Now, as far as I know, in the Alter/Lo PNAS study, they officially suggested they couldn’t find XMRV with their methods. So why can another study claim to use the very same methods, and wonder why they couldn’t find it?

    If this conclusion has been officially written into their study, they’re completely falsifying facts to suit their results. If that isn’t dodgy, I don’t know what is.

    All this being said, I do appreciate your suggestions and input. I am surprised how divided we are, especially being such a discriminated minority.

    I do wonder how opinions will change if the XMRV/ME link is buried.

  16. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I would be very surprised if in the UK this is fraud. This is only the deception part of the offence, but there has to be an economic disposition, damage, etc. as i've mentioned above. Correct me if i'm wrong, but i can hardly believe this is different in the UK or USA than over here.
    If this were to happen we would have to fight with all means, the only question is what would be the best strategy. Of course nobody knows.

    But i don't think anything can or will be buried. Why would the WPI, Alter/Lo, Hanson, Bell, De Meirleir, Cheney, Peterson etc. let this happen?
    The only thing that scares me a little bit is the possibility of contamination or something of that kind. I don't think it's very likely, but i will feel much more comfortable if we hear about what the Blood Working Group has found.
  17. xrayspex

    xrayspex Senior Member

    If good doctors and researchers had power to stop things being buried how do you explain Cheney "letting" de freitas research get buried and Straus and clowns taking over the wheel with thorazine for all?
  18. rescindinc


    boca raton, FL
    To: IamME. I agree with YOU. TMH of RESCIND, INC. bed bound 24 years.
  19. LJS

    LJS Insert Witty Comment Here

    East Coast, USA
    Please re-read what I wrote; I was not at all saying you where a new comer or that what you said is the general feeling of the ME/CFS community. I was saying that I do not want new people stumbling on this forum to think that this is what this forum is about. I am a very new member to this forum and have been taken back by some of the discussion on the forum but most is very interesting science discussion and that is why I keep coming back.
  20. Jimk


    Cleveland, Ohio
    BB- for you to jump from comparing a study that used the same testing procedures as the FDA study, and didn't find positive patients, to asserting "theyre completely falsifying facts" is a ridiculous conclusion. It's ignorant of the host of quite honest reasons researchers at the cutting edge can screw things up. The delicacy of these kind of laboratory procedures makes it easy for all sorts of things to be done differently, even when the exact steps are used. They require experienced lab technicians, exacting primers, and minor temperature differences can skew and screw results. We've already seen that how blood is collected, the kind of tubes used, makes a difference. The problem right now is that the procedures we have are not easily standardized ones, but ones that can be easily done wrong, even by highly qualified people. All this comes down to methodological differences that may have nothing whatsoever to do with "falsifying results."

    BB- If you have real evidence of fraud, then present it: testimony that someone falsified tests, or intentionally used tubes to collect blood that they had foreknowledge would create false negatives, that kind of thing. Do you have that?

    Hey. I'm pissed too: at all the bias in funding, in the irresponsibility and failure of government groups who were responsible to investigate disease for its citizens, that it required a private research institute to jump-start the scientific community into actually looking into it, at the willful neglect of all of us who have suffered for so long. I could go on.

    And Muffin- comparing this to the Tuskegee experiments is just absurd. Really. This is not even in the ball park of what's going on here.

    And how did the AIDS community put on the pressure to get research? By putting it on the government, on NIH, on the political side of funding studies, on Congress, and so on. Not by trashing scientists.

    I'm all for hitting hard and kicking ass. I've already made enemies by publicly railing at the stupidities of medical conventionalism. I've been outspoken about the psychologizing of this illness --I'm a psychologist so and they can't as easily dismiss me when I tell them that their beliefs are bullshit. I've confronted the head of Pediatric Infectious Disease at a major hospital on her ignorance for being unwilling to test my daughter for potential co-infections in CFS/ME-- turned out I knew the studies she cited as supporting her authority better than she did, because they did nothing of the kind.

    By all means, let us kick ass-- but not by ignorantly jumping to conclusions of malfeasance when studies have conflicting results. And certainly not by generating an air of threat for scientists who are finally even considering shifting their research efforts to CFS. Many scientists have already experienced their interest in our direction chilled by atmosphere of fear and threat within the University and medical community. We need to add fear of law suit if people disagree with their results?

    Do you know how much the medical profession created a threatening and chilling environment for major scientists doing research in CFS? Telling them that they risked their careers if they did hard science on a subject that was "not real." Really. I know of more than one a high level scientist at a major research university, doing research into bacterial causes for CFS in the mid 1990's, whose Dean, in panic at furor created by anti-CFS alumni of the medical school, shut down all hard science on CFS. This went on all over the country in the US.

    The problem for us has not been fraud or falsification of results. That's a specious issue. It's been that we haven't put pressure on institutions that don't generate hard science research on CFS/ME. Protesting the lack of funding, speaking out about research hospitals that don't have programatic plans for CFS/ME research. Exposing public officials, such as Reeves at the CDC, who have misdirected funds earmarked for CFS research (thanks Cort for helping in that one), you get the point.

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