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A Multicenter Blinded Analysis Indicates No Association between CFS/ME and either XMRV or pMLV

Discussion in 'XMRV Research and Replication Studies' started by Firestormm, Sep 18, 2012.

  1. lnester7

    lnester7 Seven

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    I do not have night sweats. But I was diagnosed By Klimas Group w CFS. They should include a group NEVER sweats (even saunas), I wonder if there are patients w normal sweating.
  2. biophile

    biophile Places I'd rather be.

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    I seem to sweat less now during the day, however I do often get night sweats or nap sweats when post-exertional symptomatology reaches a certain degree of severity. I also have problems with temperature regulation/tolerance, and to a lesser extent, sometimes the feeling of hot/cold simultaneously.
  3. Purple

    Purple Bundle of purpliness

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    Re. night sweats - I seem to remember that these were part of the prodrome - i.e. preceding the onset of ME and taken as an indication of an infectious onset to ME. But perhaps someone can check the transcript/see the Twiv again to confirm (I am not able to do this, sorry :()
  4. rlc

    rlc Senior Member

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    Hi all, RE Night sweats. The authors of this study seem to be working on the assumption that night sweats show that there must be some kind of infectious process going on, they say that they have tested for hypothyroidism, a well known cause of night sweats. However they do not say if they are using the new reference range for TSH, as there are almost no labs in the world that are using it at present, it is most likely that they didn’t and have missed cases of hypothyroidism.

    With the tests that they have decided to use for this study they have shown that they have a very poor understanding of the proven causes of night sweats, diagnosespro lists 131 causes of night sweats see http://en.diagnosispro.com/differential_diagnosis-for/infectious-disorders-specific-agent-night-sweats/24826-154-170.html although twenty eight of these are infectious causes, they haven’t test for all of these infectious causes that can also cause the symptoms of CFS such as TB, Brucellosis and Histoplasmosis. Various infections that cause organ abscesses will also not be found by the tests that they have used and will often need imaging tests to find.

    Many of the causes of Night sweats however are not infectious at all and will not have been found by the tests that they have done such as Sarcoidosis, Pheochomocytoma, Crohn’s disease, Inflammatory bowel disease and some of the causes of night sweats that they didn’t check for are extremely common such as sleep apnea, Candida and nocturnal Hypoglycemia which they will have missed by not doing the glucose tolerance test.

    They also have not taken into account that these patients may have some kind of infection but it is not the principle cause of their illness, so many of the diseases that they have failed to check for have already been proven to seriously affect the immune system causing low NK cell counts, altered CD4 CD8 counts, T and B cells, Cytokins irregularities etc, basically all the things that some researchers are saying proves that CFS affects the immune system, so having any of these diseases leaves the patient wide open to infection, but the infection is not the problem, finding and treating the underling illness would then mean that the immune system could work and the infection would go and with it the fevers.

    This also has to be taken into account when they say they selected patients that appeared to have an infectious start to their illness, because so many of the disease that they have not checked for damage the immune system and have a gradual onset, this means that the patient may not have felt the effects of these diseases starting, but their immune system has been damaged. So the first they know about being sick is they are struck down by some bug that there damaged immune system has not been able to fight, they then because the immune system is damaged can’t fight of the infection properly and end up house boundm, the underlying disease effects them more and more and they will also develop vitamin D deficiency due to lack of sunlight, which will further weaken their immune system. But it is the underlying known disease (not CFS) that is damaging the immune system that is the problem not the infection. The truth is that almost all the common infections linked to CFS like EBV, CMV and HHV6 are incapable of causing long term health problems in people, unless they have another condition that has damaged the immune system. Also diseases like Addison’s that they haven’t checked for can often present first with what appears like an infection it is not, it is caused by a serious lack of cortisol.

    They also say that one of the criteria for selecting patients for this study is that they had to have (gastrointestinal discomfort/ upset) how as they didn’t check for Celiac, Giardia, H pylori, Crohn’s disease and intestinal parasites which also cause many or all of the other symptoms of CFS can they possible say that these patients have CFS. They also have not given these patients Endoscopes or Colonoscopies our any imaging tests to check for the numerous other conditions that could be causing these symptoms.

    The reality is that you cannot diagnoses a patient with CFS based on any set of symptoms the only way they can be diagnosed is to test them for all the other known diseases that can cause these symptoms, it is only when the patient turns out to have none of the other diseases that can cause these symptoms that a patient can be diagnosed with CFS.It is a disease of exclusion! They have simply completely failed to do this in this study!!!

    As an example of how wrong any set of symptoms attributed to CFS can be.

    Due to the fact that the old literature on ME has on the whole been completely ignored, despite the fact that this is what ME is! ME was listed by the WHO as a neurological disease in 1969 based on the findings in the epidemics, if people read the reports of the epidemics which ME was named and classified because of. Not only do you find that the symptoms are very different to those in the CFS criteria including the CCC, but there are two very important symptoms that everyone in modern research is ignoring, and are in fact instead using as proof that patients don’t have ME. These are extreme emotional liability e.g. regular occurrence of unstable, disproportionate emotional displays, such as crying, rapid mood swings etc, and depression. These symptoms were found in all the ME epidemics. It is these symptoms that were used by the psychiatrists McEvedy and Beard to say that the Royal free hospital outbreak in the 1950s and all other ME outbreaks were just mass hysteria; they did of course ignore all the other symptoms the patients had that proved it wasn’t.

    So when you look at the exclusion criteria for this study you will see that they excluded people on the basis of (psychiatric illness that might be associated with fatigue) thereby they are quite likely to have removed ME cases from the study on the basis of seeming a bit nuts. Showing the symptoms of being a bit nuts, is actually one of the symptoms found in all the ME epidemics, it was one of the reasons it was classified as a neurological illness because it was felt that some kind of infection was damaging the patient’s brain and as well as the other symptoms causing emotional liability and depression, these symptoms are after all found in patients with numerous conditions that cause brain damage.

    The idea of sub sets is also just a theory until such time as proper testing of patients is done to rule out other disease and proper replicated science is done on them. The most obvious explanation for there appearing to be subsets of patients with different symptoms, is that these patients are not being tested to rule out all the other diseases, so there for we have mixed cohorts of people with different diseases that have different symptoms!

    Like I say we can’t blame the virologists for the almost useless set of tests that has been come up with to rule out other diseases in this study, it’s not their field of expertise. It was the CFS specialist’s responsibility. I as someone who is not a qualified doctor should when first reading the tests that they did not be experiencing feeling ranging from deep shock to falling of my chair laughing about how terrible their set of exclusionary tests are!!

    My proposal of how to fix this problem would be this

    No matter what people think of Dr Byron Hyde’s theories on ME, because nobody has ever bothered to replicate his work they cannot be taken as scientific proof. But in the one field of expertise that you can scientifically test doctors in this field on, their knowledge of the diseases that need to be ruled out and what tests to do to achieve this he excels. As an example of this he tests his patients with Doppler Ultrasound and Echocardiograms, with which he finds 25% of the previously undiagnosed conditions in his patient’s mainly heart problems. He has an extensive list of tests that he does and goes through these systematically on all his patients and finds that about 80% of them have other undiagnosed conditions that other doctors have missed.

    If I was involved in this research I would be contacting Dr Hyde and asking him for a copy of the testing regime he does on his patients. I would also be contacting Dr Shirwan Mirza who also reports finding extremely high percentages of misdiagnosed patients and get a copy of his testing regime as well and see if there is anything that he tests for that Dr Hyde doesn’t and add that to the list. And I would track down two or three of the best diagnostic specialists in the US who have nothing to do with CFS and ask them to review the exclusionary tests recommended by Dr Hyde and Mirza and see if they can come up with anything else to be added. This way you would very quickly come up with a list of exclusionary tests needed to be done that stands a good chance of finding all the misdiagnosed patients in the patient cohort selected to study. As opposed to the tests which the CFS specialists have agreed to be used in this study, which is so bad it’s largely useless.

    I would then have all these tests done on all the patients selected for this study and rule out all the patients found to have other diseases, because they have failed to test for so many of the common diseases that cause these symptoms statistically a large number will have to be removed from the cohort and other patients will have to be recruited.

    Of course you will have the slight problem of the CFS specialists getting their noses seriously out of joint because despite the fact that Dr Hyde has been making it known for years that patients are not being properly tested to rule out other diseases they have ignored this advice. But someone like Dr Lipkin would just have to tell them it’s being done, if you won’t cooperate, Bye, or the Hutchins family foundation will have to step in and tell them that they are not going to be allowed to waste their money looking at patients who because they haven’t been tested properly could have a multitude of other diseases and not have CFS at all.

    If this was done you would then have a very pure cohort to study and using the modern technology that is available it would not take them long to find out causes and diagnostic tests for people who actually have ME and start working on treatments.

    It will cost more to test the patient cohort properly, but it is the only way to guarantee that the patients actually have ME, if they carry on using the minimal tests that they have used in table one, then all the money that has been put up for this research will be wasted because statistically it can only be being done on a mixed cohort.

    Like I say Dr Lipkin has shown himself to be very interested in and influenced by the patient community and if made aware of these issues he is likely to instigate changes, I would also imagine if the Hutchins family trust was contacted and informed that their ten million dollars stands a very good chance of being flushed down the toilet due to failing to ensure that all other diseases have been ruled out in the patient cohort, that they would do something about it.

    So my message to the people reading this who can see where I’m coming from is to start kicking up a stink about the failure to test the patient cohort for all the diseases that can cause the symptoms of CFS and see if we can get things changed, before it is too late and the money is wasted and your chance of a cure being found is gone!!!

    All the best

    Guido den Broeder and ikke2001be like this.
  5. rlc

    rlc Senior Member

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    Hi inester 7, RE


    Are you saying you never sweat even when you have a sauna?? If so I can give you a diagnosis that Klimas group failed to give you. You have anhidrosis the inability to sweat, right diagnosis sites lists the 41 diseases at the bottom of this page as causes of it http://www.rightdiagnosis.com/symptoms/anhidrosis/causes.htm diagnosispro lists these 82 possible causes of absent sweating http://en.diagnosispro.com/differential_diagnosis-for/anhydrosis-absent-sweating-diffuse-causes/40374-154.html

    If you are not able to sweat?? I strongly advise that you start questioning your diagnosis as absent sweating has never in the history of ME and CFS been said to be a symptom of it!!! You need to find a doctor who is going to take this extremely important symptom seriously and find what the cause of it is, which is very likely to be the cause of your other symptoms as well.

    Hope this helps

    All the best
  6. rlc

    rlc Senior Member

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    Hi all, I would like to point out another very significant flaw in this study, and that is Bias, it is one of the important factors known in science that if you have the people doing any study on anything and they have a Bias, some pre formed idea as to what the outcomes should be, they will have a tendency to whether consciously or unconsciously, organize the study, select patients and interpret the test results to support whatever their particular bias is. This leads to very flawed science, and a complete lack of consensus over any findings, because the scientists who don’t have this bias will look at the methods used and see the faults in them.

    With the virology side of this study Dr Lipkin has gone to great length to make sure that this won’t happen. He has selected virologists from different sides of the debate, so you have the extremes of the different views, from Mikovits who was sure that retroviruses were the cause of CFS and a whole lot of other things like Autism as well, to Coffin who had been saying for ages the whole thing was just contamination and Mikovits was completely wrong, and he has included virologists who’s views fall between the two extremes of Mikovits and Coffin. This has stopped the study being hijacked by scientists with a particular bias. Which is likely to have happened, if you just had scientists who supported one of the views at either of the extremes of views on retroviruses and CFS.

    Dr lipkin has by letting the individual virologists do whatever testing they wanted on the samples, also stopped any debate that the wrong methods were used to test the samples. So we now have a situation were no matter what views the virologists had before the study, they are all in total agreement that it doesn’t matter what methods you use to test the samples XMRV and MLVs have nothing to do with CFS, so problem solved.

    When it comes to the patient selection part of this study no such care to avoid bias has been taken, there has been no attempted to include Doctors who have different views to the ones that selected the patient cohort, the CFS specialists that selected the patient cohort for this study are Anthony Komaroff, Dan Peterson, Nancy Klimas, Jose Montoya, Sue Levine and Cindy Bateman. They are all from the camp that says that CFS and ME are the same thing, which is why this study says “CFS also known as ME.” Two of the doctor’s in this group Anthony Komaroff and Dan Peterson were also involved in the creation of the Fukuda CFS criteria and have allowed their names to be included in it, Fukuda was used for this study (talk about bias!!!), the other writers of the Fukuda criteria are members of the Wessely school, like Sharpe and Simon Wessely himself and members of the CDC, The Fukuda criteria is the one that changed the symptoms of CFS so that it no longer resembled the disease talked about in the ME outbreaks, they removed all measurable physical signs, which then allowed it to be seen as a mental illness and also barred any imaging studies such as MRIs, SPECT and PET scans to be done on these patients, even though a lot of research had been published that said that it had found serious anomalies in these patients using this technology.

    Now I’m not going to say that any of the different views of the CFS or ME specialists is right because the science hasn’t yet been replicated to prove any of their views. But what I will say is the view held by the six CFS specialists that selected the patient cohort for this study, that CFS and ME are the same thing, is certainly not the view of all specialists in this field, in fact these six doctors are very much in the minority, the majority of the top specialists believe that CFS and ME are two separate things. All of the 25 writers of the ICC state very clearly in this document that ME is not CFS and has very different symptoms. And as the principle writers of the CCC are the principle writers of the ICC and they wrote the ICC because they now believe that the CCC is flawed, they would not accepted the CCC being used to select the patients, and as I have stated earlier the CCC was not used in it entirety to select the patients for this study anyway.

    Dr Byron Hyde states that ME is a separate illness and that CFS is nothing more than a collection of misdiagnosed patients with a wide verity of undiagnosed known illnesses which you will find if you test them properly, and commonly refers to CFS as Garbage bag disease because of this.

    Although we don’t know Dr Shirwan Mirza’a views on ME as in the disease that caused the outbreaks, because he has never stated what his views on this are. He is very adamant that CFS is nothing more than a group of misdiagnosed patients, which if you test them properly with the right tests using the up to date reference ranges you will always find the true known cause of their sickness, he claims he has successfully treated thousands of patients wrongly diagnosed as having CFS over the last twenty years, and has got the case notes to prove it, and has gone as far as calling the science behind CFS nothing more than pseudo science see http://www.amazon.com/review/R7UF8U7AM4SDZ

    Now this view will be probably be horrifying to many members of the patient community, but Coffins view that XMRV was just contamination also horrified many members of the patient community, but he was right. So from a scientific point of view Dr Mirza’s testing regime should be replicated on the patients selected for this study, because if he is right millions of people can be cured.

    So when it comes to the patient selection part of the study we have extreme Bias, we have six self proclaimed CFS specialists, who are all friends, who all believe that ME and CFS are the same thing, and think that it is perfectly acceptable to use a testing regime that doesn’t rule out diseases like Celiac, sleep apnea, hemochromatosis, b12 and folate deficiencies, lupus etc etc which by the way the CCC says have to be ruled out.

    This extreme bias would not have happened if, as did happen with the virology part of the study all the opposing views on this subject were involved and allowed to decide on the testing they wanted to be done. If this had happened you would have had the six CFS doctors saying the patients had CFS and the likes of Drs Hyde and Mirza testing them properly and saying guess, what heaps of these patients have other known diseases, which I think would have been quite funny.

    Like I have said these patients used in this study have not been tested anywhere near well enough to rule out other diseases and any further research on this cohort statistically has to be being done on a mixed cohort with a verity of illnesses, which means anything that is found in any further research using samples from this study will be useless and all the time and money will be wasted, if the patient community wants good science which this is not, it is up to them to do something about it.

    All the best
  7. ixchelkali

    ixchelkali Senior Member

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    Once again, I must disagree with you on this. A scientific paper must list the tests that were done as part of the study, as this one does. However, it doesn't have to list all of the tests that may have been performed on the patients prior to the study in the process of diagnosing them. In saying that the patients met both the Fukuda and the ICC criteria, that says that the patients had the symptoms stipulated in those criteria (including PEM) and that they had the tests necessary to meet those criteria (including excluding other diseases). Because that is part of the description of the patient cohort, it means that patients who met the criteria were chosen, not that they did the diagnostic procedures as part of the study.
  8. ixchelkali

    ixchelkali Senior Member

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    You've contradicted yourself here, because 2 of the six people who selected the patient cohort for this study, Lucy Bateman and Nancy Klimas, were authors of the ICC.
    urbantravels likes this.
  9. rlc

    rlc Senior Member

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    Hi ixchelkali, RE


    People are entitled to believe whatever they want to believe, but I would like to point out a major flaw in your argument, you are implying that all the other tests in the CCC were done before this study, and that the patients had all the diseases mentioned in the CCC ruled out before this study.

    So what your saying is they had all these tests done, but for some completely unbelievable and illogical reason they decided to save doing the CBC test, the most commonly done test in the western world, which almost every patient who goes to the doctors for anything has done, until they did this study, this doesn’t even begin to make sense and also means that they can’t have ruled out all the other diseases mentioned in the CCC beforehand because you have to have done the CBC to find some of them. This paper tells what they did if people want to believe that they did a whole lot of other things beforehand despite the fact the study says they didn’t that’s their choice, but don’t blame me when future studies on samples from this study come up with useless results because of mixed cohorts.

    RE You've contradicted yourself here, because 2 of the six people who selected the patient cohort for this study, Lucy Bateman and Nancy Klimas, were authors of the ICC.

    If Dr Klimas and Dr Bateman are prepared to say in the ICC that ME and CFS are different diseases, and then in this study want to say that CFS and ME are the same disease.

    It is Dr Klimas and Dr Bateman that are contradicting themselves not me!

    All the best
    jace likes this.

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