1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

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. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    A Multicenter Blinded Analysis Indicates No Association between Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and either Xenotropic Murine Leukemia Virus-Related Virus or Polytropic Murine Leukemia Virus

    mBio 18th September 2012

    Harvey J. Alter,a Judy A. Mikovits,b William M. Switzer,c Francis W. Ruscetti,d Shyh-Ching Lo,e Nancy Klimas,f,g Anthony L. Komaroff,h Jose G. Montoya,i Lucinda Bateman,j Susan Levine,k Daniel Peterson,l Bruce Levin,m Maureen R. Hanson,n Afia Genfi,o Meera Bhat,o HaoQiang Zheng,c Richard Wang,a Bingjie Li,e Guo-Chiuan Hung,e Li Ling Lee,n Stephen Sameroff,o Walid Heneine,c John Coffin,p Mady Hornig,o and W. Ian Lipkino

    ABSTRACT

    The disabling disorder known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been linked in two independent studies to infection with xenotropic murine leukemia virus-related virus (XMRV) and polytropic murine leukemia virus (pMLV).

    Although the associations were not confirmed in subsequent studies by other investigators, patients continue to question the consensus of the scientific community in rejecting the validity of the association.

    Here we report blinded analysis of peripheral blood from a rigorously characterized, geographically diverse population of 147 patients with CFS/ME and 146 healthy subjects by the investigators describing the original association.

    This analysis reveals no evidence of either XMRV or pMLV infection.

    IMPORTANCE

    Chronic fatigue syndrome/myalgic encephalomyelitis has an estimated prevalence of 42/10,000 in the United States, with annual direct medical costs of $7 billion.

    Here, the original investigators who found XMRV and pMLV (polytropic murine leukemia virus) in blood of subjects with this disorder report that this association is not confirmed in a blinded analysis of samples from rigorously characterized subjects.

    The increasing frequency with which molecular methods are used for pathogen discovery poses new challenges to public health and support of science.

    It is imperative that strategies be developed to rapidly and coherently address discoveries so that they can be carried forward for translation to clinical medicine or abandoned to focus resource investment more productively.

    Our study provides a paradigm for pathogen dediscovery that may be helpful to others working in this field.

    Full paper: Free Access: http://mbio.asm.org/content/3/5/e00266-12.full.pdf html

    I figured a separate thread for any discussion pertaining to the content of the paper itself might be useful given the volume of comments on other threads.
     
    Simon likes this.
  2. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    266
    Long Beach, CA
    This is a strange statement to find in the abstract to a virology study, and although true, I find it condescending to patients, especially since the introduction to the study itself says

    Yes, I realize that I may be being hypercritical, but I do get tired of little digs at the patient community. After all, shouldn't the "scientific community" have been the ones to wait until until a study that "met the criteria required to rigorously test the association between infection and disease," before they reached a consensus rejecting the validity of the association? Weren't they the ones who kept telling the patients to wait until the science is in?

    Perhaps I'm feeling cranky today...
     
    SOC, leela, Nielk and 7 others like this.
  3. Sean

    Sean Senior Member

    Messages:
    1,311
    Likes:
    2,348

    I did not bet my house on XMRV, et al, and I am neither surprised at the basic result of the study, nor have any problem with it – if these things are not there then they are not there, and we need to know that.

    But I am none too pleased about that damn quote. Seems both scientifically pointless, and unnecessarily provocative. Apart from any other reason it is likely to just encourage the conspiracy theorists, which we could all really do without.
     
  4. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi everyone, firstly I like to say I know that a lot of people had high hopes that retroviruses would be found to be the cause of this condition, so I’d like to express my sympathy to the people who have been disappointed that it hasn’t been proven to be the cause. Personally I’m glad that this saga is over and we can move on to other more promising fields of investigation, The Virology side of this paper looks very good and I’m pleased that this illness isn’t caused by a retrovirus because they are hard to treat. Because previous ME epidemics had a 4-6 day incubation period and retroviruses have a lot longer incubation period personally I’m not surprised that they didn’t find retroviruses.

    However I would like to express that there is one part of this study that fills me with great disappointment and makes me very worried about the future of other pathogen searches like the one being done by Lipkin and the CFI and that is the patient selection.

    They say that they selected patients who meet the Fukuda and CCC criteria and say that patients were excluded for the following confounding medical conditions: serologic evidence of infection with human immunodeficiency virus, hepatitis B virus, hepatitis C virus, Treponema pallidum, or B. burgdorferi; medical or psychiatric illness that might be associated with fatigue; or abnormal serum chemistries or thyroid function tests (Table 1).

    Table one shows the tests they did which at first glance looks impressive

    Glucose 75–100 mg/dl
    Blood urea nitrogen 7–20 mg/dl
    Creatinine 0.6–1.2 mg/dl
    Sodium 136–146 mmol/liter
    Potassium 3.5–5.0 mmol/liter
    Chloride 102–109 mmol/liter
    Carbon dioxide 22–30 mmol/liter
    Anion gap 5–17 mEq/liter
    Calcium 8.7–10.2 mg/dl
    Alanine aminotransferase 7–41 U/liter
    Aspartate amino transferase 12–38 U/liter
    Alkaline phosphatase 33–96 U/liter
    Total protein 6.7–8.6 g/dl
    Albumin 3.5–5.5 g/dl
    Globulin 2–3.5 g/dl
    Bilirubin total 0.3–1.3 mg/dl
    Bilirubin indirect 0.0–1 mg/dl
    Bilirubin direct 0.0–0.4 mg/dl
    Complete blood count
    White blood cell 3.5–9.1 [1] 109/liter
    Red blood cell 4–5.2 [1] 1012/liter
    Hemoglobin 12–15.8 g/dl
    Hematocrit
    Male 50–35%
    Female 48–31%
    Mean corpuscular volume 79–93.3 fl
    Mean corpuscular hemoglobin 26.7–31.9 pg
    Mean corpuscular hemoglobin concentration 32.3–35.9 g/dl
    Platelet count 165–415 [1] 109/liter
    Coefficient variation of red cell distribution width [1]14.4%
    Mean platelet volume 9–13 fl
    Neutrophils 40–70%
    Lymphocytes 20–50%
    Monocyte 4–8%
    Eosinophilia 0–6%
    Basophils 0–2%
    Nucleated red blood cells 0%
    Erythrocyte sedimentation rate 50 mm/h
    Serology
    Rapid plasma reagin Negative
    Human immunodeficiency virus Negative

    However when you look at it closely it is far from impressive this is just a very basic screening and they have failed to test these patients for numerous extremely common illness that can cause these symptoms.

    There is no tests for vitamin D deficiency which is extremely common

    There is no test for celiac, which effects one in every one hundred Caucasians. 139 of the 147 patients used in this study were Caucasians!

    There are no tests for Cortisol, which means they could have missed cases of Addison’s and numerous other diseases that cause low or high cortisol.

    There are no Iron studies tests done e.g Ferritin, serum iron, Transferrin saturation etc which means they will have missed any cases of hemochromatosis a very common disease that effects one in every two hundred and fifty Caucasians. And they will have missed cased cases of iron deficiency And many other diseases that affect iron levels.

    There is no tests for B12 or Folate deficiencies which are very common causes of these kinds of symptoms. They are probably working on the basis that severe deficiencies in these cause changes in the blood called Macrocytosis, however people can be very sick with these deficiencies before Macrocytosis shows in the blood and Macrocytosis is canceled out by iron deficiency which they haven’t checked for and Macrocytosis caused by folate deficiency will be canceled out if the patients have been taking B12, and B12 deficiency Macrocytosis will be canceled out if the patient has been eating food fortified with folate.

    They have not tested ANA which means any cases of lupus and numerous other auto immune diseases will have been missed.

    There is no ESR or CPK to check for inflammation

    They have only done the blood glucose test and haven’t done the glucose tolerance test which means they could have missed cases of pre diabetes another very common condition,

    They say they have tested thyroid function but have not included these tests in table one! However if they used the standard TSH reference range of (0.4-5) which has been proven to be wrong and it has been recommended that the upper range for TSH be reduced to 2.5. They could have missed many cases of Hypothyroidism. They also do not appear to have checked for sleep apnea.

    These are just some of the extremely common things that the testing that they did won’t have ruled out. There are many other rarer conditions such as Porphyria and Wilson’s that should have been ruled out if they wanted a pure cohort. And there are so many other standard common tests that have not been done on these patients.

    They say that all patients met the CCC well they might of symptom wise, but the CCC makes it very clear that there are a lot of diseases that have to be ruled out because they have the same symptoms that are found in the CCC, and although the CCC testing requirements do have a lot of holes, they do include the likes of Ferritin, CPK, ESR, CRP and ANA, so because the patients selected for this study according to the tests in table one have not had all the tests recommended by the CCC or all the diseases that the CCC recommends to be checked for ruled out, I feel it is a bit of a stretch of the imagination to say that the selected patients meet the CCC.

    The reason why this concerns me so much is not because I think it will have had any effect on the outcomes of the retrovirus part of the study, I think it is very obvious that previous positive results have been caused by contamination and the whole thing has been a wild goose chase.

    But it is very likely that Lipkin and the CFI in their future planed pathogen searches are going to use the same kind of testing to select patients for that study, because there are so many common illnesses that cause CFS like symptoms that they are not testing for, it almost certainly guarantees mixed cohorts. This will mean if they do find anything it will only be in a small number of people in the studies, who have ME, the results will be totally confusing, and millions of dollars and years of time will be wasted and everyone will have to suffer longer. All that is needed is for them to test these patients a lot more extensively before they start. Most of the additional testing is very cheap and will save them so much time, money and effort if they start with a pure cohort.

    So in a few weeks when the fuss of this study has died down I will try and contact the likes of Dr Lipkin by Email and try and pass on some information from other doctors on additional tests that should be done to get a pure cohort.

    Again my sympathies to the people, who will be disappointed by the results of the study

    All the best



     
    jace, biophile, mellster and 2 others like this.
  5. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Morning Rlc,

    I need to read the paper in full at my leisure but I think we need to bear in mind that this study (and the participants) were primarily aiming to recreate a cohort that best resembled that of the original study and met the approval of those who were involved. I think you can keep testing and testing and testing like you can keep trying and trying to find a virus - if not in blood, then in tissue, etc. - they did what they did and they all approved. Beyond reported symptomology there is very little objective exclusionary testing that will lead a person to a diagnosis of CFS/ME let alone research protocol. What has happened here seems more thorough to me that has been undertaken previously for any study. The point is - surely - that no XMRV or pMLV's were found in any of the patients or controls. If there had been any found then those patients might well have been later determined to have had something other than ME but whose symptoms were reported as being similar.
     
    barbc56 likes this.
  6. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    "Blame the patient" is the default position of the entire medical and scientific blob (I refuse to call them a community). The same stupid questions get asked at every stupid appt; Do you/ have you smoke(d), abused alcohol, eaten crap?This, coupled with a "Me Myself I" approach to research findings where the name attached makes the scientist rich'n' famous is bound to lead to premature outbursts (I managed to resist using the word ejaculations).

    At least we know now that XMRV and it's little friend are out of the race. I think - foggily.
     
  7. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    I don't think there was (intended) condescension or that any digs were being made - rather the authors were pulling together two disparate justifications for the study - remember there had been a number of (IMO valid) criticisms about the need for Lipkin et al to continue once the BWG had reported. In essence Lipkin et al are saying "we had to do this because a) patiens didn't trust the previous work, and b) we planned to do a super, super study that is much better than anything else anyone has done. I'm personally not impressed by these assertions but it is reasonable for the authors to offer a response to the criticisms about necessity of the study and I suspect that response will be accepted at face value by the critics.

    IVI
     
    barbc56 and Firestormm like this.
  8. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Lipkin actually says this in his interview with Racaniello that I am finally able to now listen to and I think he said the same at the press conference yesterday.
     
  9. biophile

    biophile Places I'd rather be.

    Messages:
    1,407
    Likes:
    4,910
    rlc. Interesting points. Note that ESR was on the list though ie Erythrocyte Sedimentation Rate.
     
  10. joshualevy

    joshualevy

    Messages:
    49
    Likes:
    27
    I think both of the quotes in posting #2 on this tread are the researchers trying to justify the study.
    Remember, a year ago, many people thought the study was a waste of time and money, and said so publicly.
    Now, it turns out, the study failed, and those people were right, so all the more reason to try to justify the expense.
    So you get quotes like the ones above, to try to convince readers that someone will care about this study.

    Let me ask this question:
    How many people here, thought XMRV was a possible cause of ME/CFS last month, but changed their mind when they read this paper, or the press coverage of this paper?

    If the answer is none (or very few) then this paper was a waste of money.
     
  11. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    I've never thought that. Apart from the incubation period, the number of XMRV viruses would simply be too small to alone cause such major damage as in ME. But it could have been a contributing factor.
     
  12. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    The original Science study included an RNase L test. Today, there are various additional tests that can be done.
     
  13. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    266
    Long Beach, CA
    I guess whether it was a waste of money depends on what the goal of the paper was. If the goal was to do a well-designed, blinded replication study to determine definitively whether XMRV was in the blood of ME/CFS patients or if the original 2009 Science paper was in error, then I don't think it was wasted money. That's the way science is supposed to work: hypothesis, test, replicate.

    The earliest negative XMRV studies were crap: they weren't replications and they had lousy patient cohorts. But when Ilia Singh's and Jay Levy's papers came out, along with John Coffin's recombinant theory and the contamination news from Silverman's lab, I thought it was unlikely that XMRV would prove to contribute to ME/CFS. But we still didn't know. I, for one, was witholding judgement until Ian Lipkin's study was done.

    The possibility that there was another infectious human retrovirus capable of causing disabling illness was too serious an issue to leave it to chance. The stakes were too high. "Well, we don't think it looks likely..." No. We --not just ME/CFS patients, but people everywhere-- needed to be sure. We needed at least one well-designed, well-executed replication study. That's not a waste of money.

    We had the lesson of the AIDS epidemic before us as an example of how serious it could be if we were wrong. And for ME/CFS patients, we had the lingering doubts about Elaine deFritas' work as an example of what it can mean when you don't have a good replication study, when you leave it at "We don't think so."

    I feel strongly that good science, science done right, is not a waste of money. I don't even think the original Science paper was a waste of money. That's how research works. You look, you think you've found something, you double-check, you publish. Then others check your work. Maybe you're right, maybe you're wrong. If you were right, great; if not, then you move on and go back to looking. That's how it is supposed to work.
     
  14. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    Dr. Lipkin emphasized samples collected from a carefully defined cohort and matched controls were a valuable by-product of the study since they were being made available for additional analysis.

    It's value may not lie in putting the question of XMRV to bed as much as what it will contribute to future research.
     
  15. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    I think we need to be careful about the specific meaning of "exclusionary". A condition is exclusionary for ME/CFS if, when treated, the symptoms disappear. Quite a few of the conditions you mentioned can exist along with ME/CFS. In other words, hypothyroidism or depression can be effectively treated, but the patient still has ME/CFS symptoms, so they have ME/CFS and hypothyroidism.

    The CCC lists things conditions that should be tested for and treated to see if they are the cause of the patient's fatigue. That is not the same as saying they are exclusionary.

    Many of the misdiagnoses occur because doctors mistake chronic fatigue (the symptom) for Chronic Fatigue Syndrome (the disease). If they diagnose strictly on the basis of fatigue, they could easily be missing another condition. Our specialist doctors look at the entire, much bigger, picture -- not just fatigue -- when they make a diagnosis.

    The good news for this study is that not only were the CCC (and Fukuda) used, the samples were taken from patients of our top-notch ME/CFS doctors -- people who know an ME/CFS patient when they see one. It's not like they took a random group of people off the street and tried to apply the CCC to them. These patients had already been through whatever exclusionary testing those doctors do routinely.

    I think the sample group of patients is probably as good as we can possibly get until we have some kind of clear, agreed upon biomarker.
     
  16. Christopher

    Christopher Senior Member

    Messages:
    482
    Likes:
    187
    Pennsylvania
    I'll let Dr. Fauci know your feelings next time we have coffee!
     
  17. Christopher

    Christopher Senior Member

    Messages:
    482
    Likes:
    187
    Pennsylvania
    This study did not rule out all infectious retroviruses, just the ones they were looking for. We will know more once the deep sequence paper is published.
     
  18. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi biophile, RE
    Thanks for pointing that out, sorry must of overlooked that, like everyone else had a busy day reading yesterday, It does raise the interesting question though that there is a lot of reports of ME patients having low ESR, by the authors of this study saying that ESR has to be normal, does that mean that they have effectively ruled a lot of ME patients out of the study???

    All the best
     
  19. Sean

    Sean Senior Member

    Messages:
    1,311
    Likes:
    2,348
    It did no such thing. It did exactly what it set out to do, test for the presence of XMRV or related viruses.

    It can only have 'failed' if it was a poor quality study, and came to false conclusions. Neither of which seem to be true.
     
    mellster, Bob and SOC like this.
  20. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246

    Morning Firestormm, Yes,
    And I’m totally happy with the virology side of this study and glad that the whole debate can now end and that we can move on to other research.

    I have not heard any of the Authors say that the aim was to create a cohort that best resembled the original study and if the testing to rule out other diseases in the original study was the same that has been done in this study it was equally flawed and guarantees a mixed cohort.

    You mentioned that “there is very little objective exclusionary testing that will lead a person to a diagnosis of CFS/ME” This is not the case CFS/ME is defined as a disease of exclusion and due to the absence of a diagnostic test the only way to correctly diagnose it is to systematically rule out all other disease that can cause these kinds of symptoms and there are about 100 of them, and then this leaves CFS/ME as the only possibility. Because the testing in this study is extremely small and doesn’t even test for a large amount of the very common diseases that can cause these symptoms the reality is that there is a very good chance that the majority of these patients in this study don’t have CFS/ME.

    But my point is that if they are going to be using samples from the patients used in this study or use the same testing protocol to select other patients for future studies, this will mean that all the other conditions that can cause these symptoms have not been ruled out and the further testing will be done on mixed cohorts. So this future research is guaranteed to end up going nowhere and wasting a large amount of money and time and because of this people will suffer for a lot longer. And it is very possible if they come up with confused results due to mixed cohorts that there funding will dry up and everyone will be left in the hands of the Psychiatrists!

    Lipkin has said “samples collected from a carefully defined cohort and matched controls were a valuable by-product of the study since they were being made available for additional analysis.”If the tests that they say they did for this study are the only ones that have been done, it is certainly not a carefully defined cohort, many, many things have been missed.

    If you take a look at what they tested for you will see that the majority of the tests are actually just a normal standard complete blood count, all of these tests are just the components of a CBC looks impressive when written out individually, but it’s not.

    White blood cell 3.5–9.1 [1] 109/liter
    Red blood cell 4–5.2 [1] 1012/liter
    Hemoglobin 12–15.8 g/dl
    Hematocrit
    Male 50–35%
    Female 48–31%
    Mean corpuscular volume 79–93.3 fl
    Mean corpuscular hemoglobin 26.7–31.9 pg
    Mean corpuscular hemoglobin concentration 32.3–35.9 g/dl
    Platelet count 165–415 [1] 109/liter
    Coefficient variation of red cell distribution width [1]14.4%
    Mean platelet volume 9–13 fl
    Neutrophils 40–70%
    Lymphocytes 20–50%
    Monocyte 4–8%
    Eosinophilia 0–6%
    Basophils 0–2%
    Nucleated red blood cells 0%


    The majority of the rest of the test are just the components of a CMP (comprehensive metabolic panel) written out individually, again looks impressive but it’s not.

    Glucose 75–100 mg/dl
    Blood urea nitrogen 7–20 mg/dl
    Creatinine 0.6–1.2 mg/dl
    Sodium 136–146 mmol/liter
    Potassium 3.5–5.0 mmol/liter
    Chloride 102–109 mmol/liter
    Carbon dioxide 22–30 mmol/liter
    Anion gap 5–17 mEq/liter
    Calcium 8.7–10.2 mg/dl
    Alanine aminotransferase 7–41 U/liter
    Aspartate amino transferase 12–38 U/liter
    Alkaline phosphatase 33–96 U/liter
    Total protein 6.7–8.6 g/dl
    Albumin 3.5–5.5 g/dl
    Globulin 2–3.5 g/dl
    Bilirubin total 0.3–1.3 mg/dl
    Bilirubin indirect 0.0–1 mg/dl
    Bilirubin direct 0.0–0.4 mg/dl


    So the only testing they actually did was CBC, CMP, ESR, Rapid plasma regain, Human immunodeficiency virus, and although they haven’t included the tests in table one they say they ruled out Hep B and C, Lyme, syphilis and ran thyroid tests, but they don’t tell us if they were using the out of date reference ranges for TSH which almost all Labs still use so this is almost certain, which if they did would have meant that they missed cases of Hypothyroidism.

    The reality is that the tests that they did hardly scratch the surface of the tests needed to rule out all the other diseases that can cause the symptoms of CFS/ME and thereby confirm the diagnosis of CFS/ME, and not only that, they have not tested for the majority of the very common disease that can cause these symptoms. If I went to a doctor and they told me that the tests that were used in this study to rule out other diseases were the only ones that they were going to give me I would sack them on the spot.

    I also find it somewhat perplexing that they say that the patient met both Fukuda and the CCC and yet there is no mention of the patients having to have the cardinal (not exclusive) symptom of CCC ME/CFS, PEM. If the patients didn’t have to have PEM how can they have meet the CCC????

    So I’m glad that they have ruled out XMPV and pMLV’s, but my point is the future of research. If samples are used from the patients in this study or the same testing protocol is used to select other patients, because they haven’t tested for so many very common illnesses that cause the same symptoms it guarantees mixed cohort. Which mean they will be testing patients with different diseases which will mean confused results and more research will then have to be done and there is a good chance this will lead to the funding drying up. Plus everyone has to suffer longer!

    But it gets more complicated than that, a lot of the common diseases that they are not testing for in this study are proven to effect the immune system, Vitamin D is for example a vital component of the immune system, also Addison’s, Hemochromatosis, celiac, sleep apnea, B12 deficiency and lupus all cause low NK cells and all of the common diseases that cause the symptoms of CFS/ME weaken the immune system in some way.

    So if you don’t rule out these diseases first and patients with these conditions are studied as well as some ME patients you are going to get a ton of information that says that these patients have immune irregularities, but it will be based on patients with many different diseases and the results will be worthless and totally confusing.

    If you do a pathogen search on patients who have not had these diseases rules out, you are going to find all kinds of different viruses and bacteria etc because it is well known that these illnesses leave people wide open to catching all kinds of infections because they weaken the immune system. So if they haven’t tested for and removed all the people with these diseases from the studies and are just assuming that everyone has CFS/ME without excluding all other diseases they are going to find a large number of different infections and won’t be able to work out which one is the cause of ME.

    You also can’t have patients with ME and co morbid conditions in any study to find the cause of ME, these co morbid condition will greatly distort any findings, patients with co morbid conditions should be ruled out of the studies unless it is something treatable like vitamin D deficiency, they can treat that first and then let the people into the study.

    Now I sure some people are going to say, but some well respected CFS doctors were involved in selecting patients for this study, Now I’d like to make it clear that I mean no disrespect to these physicians and applaud them for their continual support and interest in the patient population. However of all the names involved in selecting patients is there any that have ever made any statements about finding large amounts of misdiagnosed patients? When you compare this to someone like Dr Hyde who says that he finds about 80% of patients are misdiagnosed you have to wonder why. The reason I believe is simple Dr Hyde is an expert diagnostician whereas many of the CFS doctors are not. Dr Hyde views all patients as being misdiagnosed until he has proven otherwise and runs extensive tests for all possible causes of the symptoms. He excludes every other possible disease until ME is the only possibility no matter what the patients symptoms are or whether they had a sudden onset or not. From what I have seen of the testing of other CFS doctors, there testing for other diseases is often very rudimentary and most of the other tests they run are for things like immune function, which don’t diagnose anything except that the patient’s immune system isn’t working properly. I assume that the doctors who selected the patients for this study had some say in what tests should be done to rule out other diseases, I doubt it was Lipkin etc that did this as they are virologists. Which would show that these doctors do not have good knowledge on what tests have to be done to rule out other diseases. Once again no offence meant to these doctors, but the testing decided on to rule out other diseases in this study has more holes in it then a piece of Swiss cheese!!

    So if future research is going to get anywhere with understanding the cause, possible treatments and diagnostic tests for this disease, it has to be based on the fact that CFS/ME is a disease of exclusion! And patients selected to be studied must have all other possible causes of their illness ruled out first. Not just say that they have a group of symptoms that are common to a very large number of diseases and give them some extremely rudimentary testing.

    Obviously it will cost a bit more to test patients properly first, but it the long run it will save a large amount of money and time, because if they continue using the testing that they used in this study the results will be based on mixed cohorts and be confusing and largely worthless and they will have to start again, IF anyone is prepared to pay for it.

    So when the fuss of this studies results have died down I will try and contact some of the people involved and see if I can get them to include more testing for the patient cohorts, otherwise I do not have high hopes for the future of research that these Doctors are planning!!

    All the best



     
    jace and biophile like this.

See more popular forum discussions.

Share This Page