AWESOME rebuttal to UK "research"

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jan 6, 2010.

  1. AuntTammie

    AuntTammie New Member

    This was just posted on co cure and is allowed to be re-posted (btw, when I wrote somethign about the research earlier, I did not realize that Wessely, et al were the ones responsible (I guessed it was someone in their evil camp, but somehow it escaped me that it was actually him and wonder they got the results they did!) Mary Schweitzer is a great advocate and she is the one who wrote the following:

    I have posted a response under the title, "Pay Attention to the Data Set," to the article, "CFS patients in UK show no signs of suspect virus," in New Scientist online:

    Pay Attention To The Data Set

    Thu Jan 07 04:52:29 GMT 2010 by Mary M. Schweitzer, Ph. D.

    There is an old saying in computerized statistics: GIGO. It means garbage in-garbage out - the study is only as good as the data set. In this case, the data set came from patients diagnosed with a version of CFS that is entirely psychiatric. Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").

    Two more of the seven authors on this study work with Wessely at Kings College, London. Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out before they reached his clinic for diagnosis. Makes for a tautology, then, if there are no physical abnormalities in his patients.

    Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.

    These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."

    The Kings College picture of CFS can be viewed on their website, at <>

    If you are pressed for time, read the section called "Letting go of support," at


    The fact of the matter is that patients so diagnosed do not have the disease that was studied at the Whittemore-Peterson Institute. Most likely, they have a form of depression.

    A great deal of useful resarch into biomedical markers and viruses has been conducted using the Fukuda definition for CFS (CDC, 1994). Wessely, White, Sharpe, Cleare, Chalder, et al, however, origionally rejected the Fukuda definition, substituting instead a definition that did not include any physical symptoms but allowed depression. The result, not unsurprisingly, is that most of their patients suffer from some form of depression. (Ironically, the jury is still out on whether CBT/GET even helps the depressed patients.)

    In this article, however, the researchers claimed to have used the U.S. CDC Fukuda definition. The definition requires six months of debilitating fatigue plus four our of eight possible physical symptoms. If the correct symptoms are chosen, particularly if interpreted more generally, it is possible to make depressed patients look like they fit the Fukuda definition.

    Note what happens if you use the following:

    - Six months of fatigue

    - Headaches

    - Sleep abnormalities

    - General aches and pains

    - Distraction or confusion

    Who needs a retrovirus when "CFS" can be so easily "cured"? According to Kings College, "Our routine treatment is cognitive behaviour therapy ... Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult."

    The patients who have tested positive for XMRV in the Mikovits et al studies have very different medical histories. Most have other diagnosed medical conditions - including, but not limited to, Coxsackie B, Adenovirus 4, HHV-6 (Variant A), recurring EBV, HHV-7, cytomegalovirus, chlamydia pneumonae, mycoplasma. Many of them have a nonexistent natural killer cell function, a viral antibody truncated in half (the 37kDa Rnase-L), and/or inverted T-cell ratios. Some who have been sick for decades have developed myocarditis, stem cell cancer, Burkett's lymphoma - and of these, too many have already died.

    What on earth do the King's College clinic's patients have in common with those of Dan Peterson at Incline Village, NV? Only the name "chronic fatigue syndrome." There is no shared meaning.

    For a true evaluation of the XMRV research, it's necessary not only to follow the process precisely, but also to use a comparable data set. This data set has absolutely nothing in common with the one used by the WPI, NCI, and Cleveland.

    And that is what is meant by the old saying, GIGO.

    Reviewers of research for publication must pay more attention to the data sets being used. The results mean nothing if you are comparing apples to oranges.

    It is also well past time that political entities charged with the health and well-being of the public ALSO pay attention to the way research has been constructed, not just the abstract or the final paragraph.

    Without consistency, there is no science. Only opinions.

    Mary M. Schweitzer, Ph.D.
  2. simonedb

    simonedb Member

    when I saw wessley it explained it all, bummer
    but hopefully they will be exposed
    I spose if the govmts paying for all the healthcare they want to find a way to get out of it and discredit a virus thats expensive....cbt doesnt cost too much
  3. AuntTammie

    AuntTammie New Member

    I actually feel better knowing that it came from him.....many people know how wrong he is, so hopefully they will find out that this came from him and it will hold less water (well except possibly in the UK, and I feel soooooo very bad for UK CFS patients)

    I was originally thinking that it was someone else who shared his viewpoint, but not actually him and that had me more worried bc I was fearful that his influence was still spreading, even thoguh a lot of people are finding out that he is wrong.....if the same agenda comes from more people, then others are more likely to think it's accurate, but if it's just from a few, it is more easy to dispel it

    plus, I also feel like he is a known enemy, whereas if it were someone else, it would be like, great there's another one to worry about

    not sure if I am explaining myself very well - need to go to bed
  4. fight4acure

    fight4acure Member

    I"m about to sing a song.... (Goes with the song, On top of old smokey, all covered in cheese)

    On top of old UK, covered in CFS blood,
    all of the test tubes, just fell down the tub...

    I lost all of the data, I lost my passwords...
    and in the end there, no one was heard...

    But I got in the papers, I got noticed...
    I love my old theories, blown in the wind...

    Next time someone asks you, if this was real...
    Just eat a banana, and make them slip on the ole' peel.

    Fight :)
  5. ladybugmandy

    ladybugmandy Member

    if other studies prove the WPI theory, otto erlwein's reputation will be tarnished.
  6. skeptik2

    skeptik2 Member

    Everyone, Mary is very sick, but she uses her energy for us everyday, in
    everyway, doesn't she?


    Also, the WPI has posted a rebuttual to this shoddy study; see their .org site!
    They explain exactly HOW this study was a farce...I'm sure they have been
    waiting for it and knew the results would be skewed by not only the patient
    cohort, but by the lab science itself.


    p.s. Do no despair; true science will win this 'game'!
  7. ladybugmandy

    ladybugmandy Member

    i dont know how mary does it. she is a Godsend.

    yea that UK study is starting to look ridiculous. they just picked random CFS patients with no blood work to even see if they had any inflammation or anything.

    it was reviewed for only 3 days before they stuck it online. what a joke.

    what worries me is that VIP is finding XMRV in only 36% of blood samples sent to them..that isn't much at all.

    maybe this UK article will make them rush the antibody test out.

  8. mbofov

    mbofov Active Member

    that is awesome, very articulate, very well said - it feels like we are in Alice in Wonderland - why are these people (wessley et al and the CDC) so bent on proving nothing is physically wrong with us? Is it for money somehow? aren't they worried about the blood supply if nothing else?

    I'm going to look up the WPI response.


  9. simonedb

    simonedb Member

    watch the film "and the band played on" its the story of aids hiv unraveling in the early 80s and the blood banks knew the blood was tainted but they didnt deal with it right away because it costs a lot of money to screen for it, so no, i dont think govmts and ins. co.s are initially motivated to protect the population's health, different things motivate them apparently. I mean why would bush have invaded iraq the stupid way they did where thugs were taking weapons of mass destruction out by the truckload unchecked after u.s. kicked the u.n. out, I mean bush has daughters, wasnt he worried about making the world more unsafe for them, i could go on, but google noam chomsky or read his books he explains pretty well some of the politics that motivate different countries.
    but I too continue to be perplexed and like to keep asking why...

  10. hensue

    hensue New Member

    As stupid as it was when Bush invaded Iraq. My son who had no choice was one of the first who had to go in.
    I am just saying you are stepping on toes.

    As my Mom always said do not talk about politics or religion. In private yes or somewhere else.

    By the way I am glad you mentioned the band played on. I remember that movie now and you are right.

    Take care
  11. fight4acure

    fight4acure Member

    Cognitive Behavioral Therapy is helpful if done properly. The therapy in the past was done improperly by making us CFS pts feel like we caused ourselves to be ill by thinking we're ill. However, that is not what CBT is designed for, and much abusive practices continue to be used.

    The proper CBT needs to be done to be effective. Not all CFS pts, like myself, will benefit from CBT, but it is just another tool, if used properly and not abusively, that can help us cope, as does stretching and other alternative forms of therapy.

    Fight :)
  12. AuntTammie

    AuntTammie New Member

    I understand what you are saying; however, CFS IS very much a political issue.......the UK's actions and the CDC's actions are politics.......what simone said was simply making a comparison to other political situations; I really don't think she was knocking the military (it is quite possible to disagree with what our former president did and at the same time still be tremendously supportive of our troops)....and I do definitely believe that political discussion related to CFS is welcome here.....I am sorry if it bothers you or seems to somehow be a statement against your son, but I really don't think that was the intent

    I hope that your son made it back out.....and I thank him for what he did (I do not agree with our govt's choices re the whole situation, but I VERY much appreciate our military's willingness to do what they do for our country)
  13. AuntTammie

    AuntTammie New Member

  14. AuntTammie

    AuntTammie New Member

    definitely let's hope! some reputations really are begging to be tarnished in this situation

    and the WPI rebuttal is quite good.....just thought that it was also quite good of Mary to once again write something so helpful
  15. AuntTammie

    AuntTammie New Member

    "bent on proving" is rt! personally, I think that there is more than just money at can certainly motivate malfeasance, but the extent to which the psych camp has gone to discredit and threaten many who oppose them, and the multitude of ways in which they repeatedly harm the patients and act as if they have a major vendetta against us, when we have done nothing to them, makes it seem like there is more going on

    the many verifiable facts showing just what they have done, plus the secret file in the UK, plus the fact that UK patients have not been allowed to give blood, despite the insistence that this is in patients' heads.....add it together, and I believe that something major is being covered up

    that is just my opinion, of course, & it may sound paranoid, but it is based on an awful lot of verifiable research and a pretty good knowledge of human nature
  16. simonedb

    simonedb Member

    yea aunttammie nailed it
    I am grateful for the military, I don't condemn them with politicians I don't like but I understand it was a little bit of an edgy post on my part so sorry if offended you, I also hope your son is ok.
    some days I just step out a little, get ornery ya know :)
  17. gapsych

    gapsych New Member

    Aunt Tammy for posting this.

    Fight, how funny!!

    I know I am biased but this is one reason I believe in Science Based Medicine and critical thinking. I really think this study will be scrutinized hopefully vigorously not only by the scientific community but also the general population.

    If we don't have this scrutiny, a study like this would more likely be credited as true.