Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by pollycbr125, Aug 25, 2010.

  1. pollycbr125

    pollycbr125 Senior Member



    Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

    Authors: Shyh-Ching Lo (US Food and Drug Administration) et al.

    Published in the Proceedings of the National Academy of Sciences (PNAS) on August 23rd 2010.

    Pdf available on-line: html

    Accompanying commentary by Valerie Courgnaud et al: html


    Murine leukaemia viruses (MLV) are retroviruses known to cause cancer in certain mice. In 2006, investigators found that a type of MLV, called xenotropic murine leukaemia virus-related virus (XMRV), could potentially infect humans after finding it in tissue samples from men with prostate cancer. XMRV is one of a number of MLVs that appear to be transmitted to humans.

    In October 2009, Lombardi et al published the results of study in Science which contained evidence that XMRV was present in a high percentage (67%) of people with ME/CFS and in a small percentage of healthy controls.

    Since then there has been a great deal of interest from researchers in a number of countries where ME/CFS is recognised. A number of research groups have attempted (or are still attempting) to repeat these positive XMRV findings.

    Confirming or refuting new findings is a vital part of the scientific evaluation process and involves other independent research groups trying to either replicate or validate the results.

    In relation to XMRV, a true replication study should involve exactly the same laboratory methods and same type of patients that were used in the original Science study. A validation study gives scientists a degree of flexibility. In particular, it provides the opportunity for other research groups to try and repeat the findings using what they feel are the most sensitive and accurate laboratory methods they have access to for testing for XMRV.

    In the case of XMRV almost all of the first wave of research has involved validation studies. Firstly, because there is no international agreement about the most accurate and sensitive way of detecting XMRV in blood samples. Secondly, because these research groups all wanted to move quickly, and the easiest way to do so was to use stored blood samples from people who had been diagnosed with CFS in the past according to Fukuda research criteria. Stored blood samples from people who met both Fukuda and Canadian criteria (which were used in the original study) are not readily available.

    Results from four emphatically negative validation studies of varying quality - three carried out in Europe and one carried out by the CDC in America - have now been published in scientific journals. Results from a further (so far unpublished) study, carried out by Professor Brigette Huber, were presented at the Invest in ME conference in May 2010 (report available on MEA website and in the August 2010 of ME Essential).

    None of these five research groups - which in the case of the UK included Professor John Gow, Dr Kate Bishop, Dr Jonathan Kerr and Dr Jonathan Stoye and used patient samples supplied by physicians and neurologists including Dr Abhijit Chaudhuri and Professor Peter Behan - have been able to find evidence of XMRV in blood samples from ME/CFS patients, or in the healthy controls.

    Although some very valid criticisms have been made about all of the XMRV negative studies, in particular the most recently reported one from America, a number of distinguished virologists who work with retroviruses and XMRV have been involved - so these XMRV negative results have to be taken seriously as well.

    THE LO et al STUDY

    On 23 August 2010 the results from the first follow up study to firmly support a link between a retroviral infection and ME/CFS were published.

    This study is clearly an important contribution to the XMRV debate in that it fully supports a link between ME/CFS and retroviral infection. In this respect it also supports the findings in the Lombardi paper.

    However, it is not a true replication study, and in the words of the authors they have not attempted to fully replicate the Lombardi et al findings.

    Lo et al have used different laboratory methods and different patient criteria and their findings relate to what are called MLV-related viruses.

    The research group have found segments of genetic material (not whole virus) from what they term a genetically diverse group of MLV-related viruses. These sequences are more closely related to those of polytropic mouse endogenous (=arising within or derived from the body) retroviruses than to those of XMRVs - hence the use of the term MLV (murine = mouse leukaemia virus) in the title. But they all belong to a closely related family of retroviruses.


    In contrast to the Lombardi et al study, which involved patients who met both Fukuda research criteria and Canadian Clinical Criteria for CFS, this research used stored blood samples from ME/CFS patients who had been diagnosed using either the 1988 Holmes research criteria or the 1994 Fukuda research criteria. The patients were diagnosed with CFS from the mid 1990s onwards and most of the frozen blood samples were supplied by Professor Tony Komaroff at Harvard Medical School, Boston. Professor Tony Komaroff is a well respected physician with a longstanding interest in ME/CFS. In addition, 12 patient samples came from other US physicians whose diagnostic criteria for ME/CFS is not stated.

    The numbers involved were surprisingly small for a study of this nature: 37 patients with CFS and 44 healthy controls.

    The healthy control samples came from Washington DC blood donors recruited between 2003 and 2006.

    So these results apply to a rather broader group of ME/CFS patients than was used in the Lombardi et al study and the patient sample is probably very similar to at least one of the other validation studies that produced negative findings in relation to XMRV. As with some of the other validation studies, it is highly likely that a significant number of people who also meet Canadian Clinical Criteria will have been included in this study.


    MLV-like virus gag gene sequences (in simple terms segments of viral genetic material) were found in 32 out of 37 (86.5%) of the ME/CFS patients compared to only 3 out of 44 (6.8%) of the (blood donor) healthy controls.

    Follow-up samples were collected from 8 of the CFS patients in 2010, and 7 of these again tested positive for MLV-like gene sequences.

    As already pointed out, the evidence in this paper relates to a genetically diverse group of MLV- related viruses with gene sequences that are more closely related to those of polytropic mouse endogenous retroviruses (mERVs) than to those of XMRV. XMRV is a genetic variant of MLV-like viruses - so this is a subtle but relevant distinction.

    The authors point out that they have taken exhaustive steps to try and ensure that they have not produced false positive results as a result of mouse DNA contamination, or any of the other potential laboratory problems that come when working with retroviral infections.


    The authors point out (p5) that the finding of XMRV or MLV genetic sequences in people with ME/CFS, or any other disease, does not constitute definite proof of viral infection.

    They then go on to make it clear that further research will be required before any definite conclusion can be drawn as to whether MLV-related viruses play a role in the causation of ME/CFS. This is a process that is going to take time and further research.

    They also state (p6), as has been pointed out in previous MEA summaries on XMRV, that a high frequency of MLV-related viruses (or XMRV) in ME/CFS patients could reflect an increased susceptibility to viral infections due to the underlying immune dysfunction found in ME/CFS rather than a primary disease causing role in the pathogenesis of ME/CFS. In other words the retrovirus could just be there as a 'harmless passenger'.


    The MEA continues to believe that there is no point in spending very large sums of money on arranging blood tests, which may not have been properly validated, for XMRV (or MCVs) outside the UK. Having a positive result is not, in our present state of knowledge, a diagnostic marker for ME/CFS. Equally, having a negative result does not mean that you do not have ME/CFS. Having a positive result will not affect ME/CFS management at present and if this information is inserted into medical records it could in due course cause problems with other health matters such as applications for insurance policies or travel abroad.

    The way in which these viruses might be transmitted from person to person also remains uncertain and sexual transmission is one possibility - as in the case of HIV. However, if this is a disease causing virus like HIV, sexual transmission appears very unlikely given the fact that ME/CFS appears to be very rare in sexual partners of people with ME/CFS, even after long periods of time.


    The MEA continues to believe that the current uncertainty over transmission of these viruses/viral segments means that people with a current or past history of ME/CFS should not be donating blood and we have recently written to the acting Chief Medical Officer at the Department of Health to seek clarification on what appears to be a recent decision to extend the UK ban to people who have recovered from ME/CFS. Copy of this correspondence:

    We find it surprising that the American authorities responsible for blood safety have not followed the UK lead here.


    The authors of this paper make no comment or recommendations regarding the use of antiviral drugs. However, others (including the authors of the accompanying commentary) are now suggesting that it is time to assess the use of antiretroviral therapy (ART) in ME/CFS in some clinical trials. It is well accepted that one way of examining the possible cause of a disease is to assess the response to specific forms of treatment.

    The MEA has already pointed out on several occasions that this type of clinical trial would have to proceed with great care given the fact that ARTs can have serious side-effects. In the case of AZT, this drug can cause mitochondrial damage - which is obviously very relevant in ME/CFS. But there are other ARTs becoming available that appear to be active against XMRV and may be much safer to use (eg reverse-transcriptase inhibitors such as tenofovir and emtracitabine).

    We have also pointed out that ARTs appear to have very limited effect in reducing fatigue in HIV/AIDS, and that this may be due to the immune system activation that is occurring in this situation rather than any direct effect on reducing the viral load of the HIV infection. So drugs that dampen down immune activity (eg a tumour necrosis factor inhibitor such as etanercept) may be a more appropriate route to follow. More information at:

    In the UK doctors are very unlikely to be willing to prescribe any type of antiviral treatment on an individual (ie non research) basis. This is because the 2007 NICE guideline on ME/CFS specifically recommends that antiviral drugs should not be used to treat ME/CFS. And if anything goes wrong through the use of a potentially toxic antiviral drug, that is in effect banned by NICE, and has not been assessed in a proper clinical trial, the doctor responsible could face legal action even though the patient accepted the risk.


    Investigators at FDA, NIH, CDC and other scientific institutions are in the process of conducting studies to verify the capabilities of the tests used by the different laboratories for the detection of XMRV or MLV-related viruses in blood. These studies are intended to develop and standardise a highly sensitive and specific XMRV test to better study its association with disease, as well as the possibility that XMRV can be transmitted to blood or tissue recipients.

    The UK Medical Research Council's Expert Group on ME/CFS research (of which CS is a member) has identified all aspects of viral infection in ME/CFS (including carefully targeted use of antiviral agents) as a priority item for further UK research and we expect that this recommendation will now be translated into action.

    The MEA is again making it clear to UK research groups with expertise in retrovirology, and access to reliable patient samples, that we would very much welcome good quality research applications relating to any aspect of XMRV or MLVs. The MEA is also willing to consider co-funding research applications in this area.

    We are in contact with most of the key UK researchers working on XMRV and we are also assisting with a small UK study that is intending to retest people who already have a positive XMRV result as a result of having this test done in America.

    We also need to find out how common these new retroviruses are in people with other chronic disabling conditions, especially those that involve immune system dysfunction.


    In America, the paper has been quite widely reported with most of the coverage being supportive. In the UK there has been very little interest in the press release - apart from the Daily Mail (which carried an on-line story) and the New Scientist >> which includes quotes from Professor Myra McClure, one of the UK virologists involved in a negative validation study.

    Lack of coverage in the UK is partly because selected health journalists, who might have reported the story, like to have access to a new research paper well before the information enters the public domain - so they have a day or two to chase around and obtain informed comment on the story. Health reporters have finished writing their copy for the next days paper well before 8pm in the evening - so unless there is a real breakthrough news item they are not at their desks in the evening. The US press conference at 8pm UK time did not fit in with their working arrangements for printing something on Tuesday and the findings would be 'old news' by Wednesday. In addition, they also had a good headline health scare story for Tuesday morning relating to people being refused an anti-cancer drug due to a NICE ruling.

    Unfortunately, there are health correspondents that I speak to on the more influential papers and journals who are now very cautious about covering ME/CFS stories.


    In very simple terms the clinical and scientific community regards published papers rather like goals (of varying quality) in a football match. So the current score is XMRV and MLV positive 2 (with a spectacular first goal!): XMRV negative 4 (of varying quality) with plenty of time left before the final score.

    The comments so far that I have read, or been given, by experts in this area of virology indicate that everything has been done correctly in this study and that this is a sound piece of laboratory research. However, with differing results from differing well respected retroviral laboratories, the clinical and scientific community is likely remain uncertain or sceptical about the link between retroviral infection and ME/CFS.

    Another analogy is fitting pieces into a jigsaw puzzle with a lot of blue sky. We now have six pieces (ie published papers of varying quality) in place and some strong opinions on either side. But a lot of pieces have still to be fitted into the picture.

    Overall, there is no sign of any real scientific consensus emerging as to whether XMRV and/or MLVs are playing a significant role in ME/CFS and many key questions regarding prevalence, transmission and pathogenesis remain unanswered. Things may become a bit clearer as a result on the international meeting on XMRV in September, which will include a session on ME/CFS. Proposals for further research may also emerge after this meeting.

    This uncertainty and scientific disagreement seems likely to continue until well into 2011 and the current findings are unlikely to have any significant influence on the forthcoming review of the NICE guideline or the increasingly difficult position faced by people with ME/CFS in relation to sickness and disability benefits. [Our most recent correspondence on 24 August from NICE indicates that they have still to decide on the date at which the review will take place, whether it will be a full review - which could take up to a year, or whether they might delay the review to await the results of further research from clinical trials.

    More top quality research is clearly needed here in the UK and the MEA is very willing to consider funding it.


    FDA Question and Answer on the paper:

    Answers to the final three questions, which are of importance to US readers:

    9. Does FDA agree with the AABB recommendation to discourage donation by people with history of CFS?

    FDA does not object to the AABB recommendation. The AABB recommendation is consistent with a long-standing position of the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America that individuals with CFS voluntarily should not donate blood.

    10. How are the differences between the CDC and FDA study results being evaluated?

    Differences in the results could reflect differences in the patient populations that provided the samples. Alternatively, undefined
    differences in the method of sample preparation could be contributing to the discordant test results. All of the scientists involved are working collaboratively to design experiments to quickly answer this scientifically puzzling question. An independent investigator at the National Heart, Lung, and Blood Institute (NHLBI) set up a test set of 36 samples, including known positives and presumed negatives. Both the FDA/NIH and CDC labs participated in this test, and the results showed that both labs were able to detect XMRV present at low levels in blinded samples. Additionally, the CDC laboratory provided 82 samples from their published negative study to FDA, who tested the samples blindly. Initial analysis shows that the FDA test results are generally consistent with CDC, with no XMRV-positive results in the CFS samples CDC provided (34 samples were tested, 31 were negative, 3 were indeterminate).

    11. What do these findings mean to CFS patients and clinicians who treat them?

    Although this study found MLV-like viral gene sequences in a high percentage of CFS patients, this does not prove that these retroviruses are the cause of CFS or of any other disease. Moreover, other studies have not found evidence of such retroviruses in patients with CFS. Further studies are necessary to determine if XMRV or other MLV-like viruses are reproducibly associated with CFS, and if so whether the virus is a causative agent or a harmless co-traveler. The different findings from various studies reinforce the need for more research--including careful analysis of other cohorts of CFS patients from different geographic regions, studies of larger populations of healthy people, and testing of transmissibility of the agents through blood transfusions in animal models. FDA, NIH, and CDC have and will continue to collaborate with other agencies and groups involved in this research.

    Summary prepared by Dr Charles Shepherd
    Hon Medical Adviser, MEA

    MEA website:

    NB: There will be a delay in placing this item on the MEA website because our webmaster is away on holiday for the next few days.

    25 August 2010
  2. Sherby

    Sherby Sherby

    London UK
    Seems strange i would have thought this news would come across excited and hopeful but sounds very down beat to me.
    how can Dr Charles Shepherd say The Lo et al study it is not a true replication study, then how can you say that the four
    emphatically negative validation studies are correct. These cant be validated if your counting them as true replication studies as well. Come on bite the bullet and fight for us the real ME community. Don't talk negative be positive.
  3. Cort

    Cort Phoenix Rising Founder

    I like it actually. He's very moderate and very careful. Its true that he's not being enthusiastic - he's just trying, it appears to me, to present the information as objectively as he can.

    His comment, again, that the ME Association would love to fund XMRV projects suggests nobody's asked them to! Or at least they haven't gotten any good proposals - an odd thing.

    I didn't know that you basically cannot get antivirals for CFS in the UK - what a world you live in!
  4. V99


    The UK media is not covering the story because of the negative UK studies, it has nothing to do with when a journalist is sat at their desk. They knew about the story since the Thursday before.
  5. Daffodil

    Daffodil Senior Member

    i read about a man who sued to get antivirals for CFS in the UK and lost. they are hardcore denialists.
  6. SOC

    SOC Senior Member

    As I understand it, "validation" and "replication" have clearly distinctive meanings in scientific jargon. Someone please correct me if I'm wrong in the following. :Retro smile:

    A discovery paper is the first published paper about research that documents the truth of a new hypothesis, eg ME/CFS is highly correlated with XMRV.

    A replication paper documents research that follows exactly the method and procedures of the discovery research. A replication paper can be positive (supports the hypothesis) or negative (contradicts the hypothesis).

    A validation paper documents research that does not use exactly the same methods as the discovery research, but gets the same results (supports the hypothesis).

    A pointless paper documents research that does not use exactly the same methods as the discovery research and does not get the same results (contradicts the hypothesis). Generally a waste of research funds.

    Okay, I admit the last one is my own invention. ;)

    The hypothesis is not considered confirmed until there is at least one positive replication or validation paper. The higher the quality of the research, the stronger the confirmation.

    A positive replication study IS NOT necessary to confirm the discovery. A validation paper is, in some ways, even better. It shows that the hypothesis can be shown to be positive by more than one method.

    A negative non-replication study means nothing with regard to the discovery. It is not necessary that the discovery be confirmed by ANY possible method another researcher can devise. A negative replication study brings the discovery into question because it could not be duplicated by another lab using exactly the same methods and procedures. Multiple negative replication studies indicate that the original hypothesis is not proved.

    In summary, a replication paper is only necessary to disprove the hypothesis. (Even the one method doesn't really work). To confirm a hypothesis, either a positive replication paper (at least one method works) or a validation study (more than one method works) is necessary.

    In our case we have:
    Discovery paper (Lombardi et al)
    A bunch of pointless papers (McClure, CDC, etc, etc)
    Validation paper (Lo, et al)

    The 4 non-replication non-confirming papers prove nothing about the hypothesis except that the hypothesis cannot be confirmed by that method. Sometimes useful for future research, but stupid to perform before a confirmation study (replication or validation). First validate (or disprove by negative replication) the hypothesis, then try to find which, if any, other methods work.
  7. VillageLife

    VillageLife Senior Member

    United Kingdom
    Im speechless.....what happened to 24 hour media??

    but I want to say again the BBC is one of the best news services in the world....they were prepared to cover the story on a negative paper but not on this HUGE story about a positive study!

    Here is a link to my regions ME support group..... check out the latest news!!
  8. V99


    All the 4 negative papers show, is how not to do it.
  9. ukxmrv

    ukxmrv Senior Member

    Oh no, not the Sussex group... at least give them a blood pressure warning first!
  10. Sherby

    Sherby Sherby

    London UK
    The lack of press coverage and lame MEA report surely proves that ME/CFS is being managed by parties probably governmental groups.
    I'm sure when and if we hear from theses groups, they probably wont support the findings of WPI FDA etc
    Will give it some negative spin. Wonder how long it will be until they finally see the light.
  11. VillageLife

    VillageLife Senior Member

    United Kingdom
    :) :) :)
  12. Sunshine

    Sunshine Senior Member

    Dull as dishwater, but we can still drink from the tap.

    The ME Association are partly funded by the UK Department of Health to take a pro psychiatric view of CFS/ME and so they cannot react to the latest news positively, other than with a yawn pointing the way others have already walked. E.g. not take the lead, but follow like a tired sheep with muddied hooves needing a lay down by the farmers gate.... If the ME Association takes an enthusiastic approach over XMRV as ME patients hoped, the state run health service (NHS) could be inundated with CFS/ME patients asking about an XMRV/MULV test and treatment which blows the DOH's position that CFS/ME is a biospychosocial disorder treated with CBT and counselling and back to work programmes. This is the terrible fear, and so it is nipped in the bud.

    There has been total silence over the news, which confirms the UK is indeed a police state when it comes to information control. We all knew this anyway, the UK has the highest number of CCTV cameras in the world, and all phone conversations and emails are recorded. For a tiny little island (that should be utterly irrelevant) we have significant influence around the world. The UK is expert in information control and 'managing' situations that the public are not informed about. If the newspapers and ME Association etc published the FDA MULV news, costs would increase for the state. ME would suddenly become the next HIV health tragedy. If data can be firewalled, then block it at the source. The source is the media and ME charities. (Both of those avenues are covered).

    It's best then for the state (via the ME Association and others) to sit on the fence and counter argue to the negative over XMRV/MULV, after all Dr Shepherd is not home bound, bed ridden or paralysed. It doesn't affect him. Charles Shepherd has 5 children. His life is complete, he is financially comfortable, he is not on a 300 ($550) monthly disablity to stay alive. There is no sense of immediate urgency for him, he does not need to push anyone to save his life or give them chance to fall in love and form a relationship that has been denied to him due to neuro immune disease, thus giving the possibilty for a future family and children. Women have limited fertility time. We cannot wait for another 10 years, for many people it's too late. The psychiatric profession stole our chance of recovery through the prevention of biomedical research investment over DECADES, and so naturally, anyone who sides with the psychiatrists and psycholgists who have 'ideas' people's minds keep them ill with ME, is seen as traitor. And traitors they are.

    ME Association can say they push for ME patients help, and say it for another 30 years but the fact is the status quo has not changed since ME charities were first formed and won't until people write the truth. (Words mean little when words are ignored or disingenuous or laxidasical in delivery). The situation is worse now that in was in the 1980's. Yuppie flu has been replaced with, 'I am like you and can be cured with CBT'. (This never existed back in the 1980's). The situation for ME patients is much much worse, so all the charity work has been useless and pointless and achieved nothing.

    Only in the late 1990's did doctors in the UK start to claim ME could be cured with CBT/Exercise, before that they just ignored you. It was better to be ignored, safer too. Now they want us in psychological rehabilitation clinics and phone our houses when we don't attend one. Indeed, the UK government threaten to take aware social welfare payments (that pay for food/heating/lighting) unless we attend. The ME Association (and other influencial charities) never took on a sustained criticism or rejection of CBT, they never exposed the lie all over their website. They just shrugged and said well, if it helps some people with CFS, whatever. All to the massive detriment of people with neuro immune disease, people who now realise they have XMRV/MULV. People who never were going to be 'managed' or cured with CBT, and who would always be blamed, relapse, and look foolish when failing to recover with CBT....Further damaging already fragile relationships with their doctors.

    For the ME children and teens who are now obese or withered 40/50 something women and men laying in a dark room with no social contact with the outside world, (save for a home care 2x a day visit to change incontenance pads) these people's lives are not complete as they haven't even started yet. Who cares? Where is the massive expenditure on MS either? Nothing. People ruined for life are of no interest to the government whatsoever, you are a failed tax mule. People are expendable, especially crippled people who cannot be seen. ME sufferers are not 'cost effective' to keep alive or spend money on if the outcome is not known or poor. This is the tragedy of socialised medical care when faced with a political illness. No illness should be political, but sadly as people with CFS/ME have found out, theirs is.

    By announcing this MULV finding with fanfare and positivity, this would lose ME Association their grant from the state and displease the Wessely school, part of who's ideology is to promote CBT and altering illness beliefs to aid a recovery in 'CFS/ME' and get back to work. This is what Wessely means when dismissing XMRV findings (and his responsibilities of speaking as a doctor) by saying ''I'm in the business of rehabilitation''. His theory is ME does not exist, CFS replaces ME and CFS patients can be rehabilitated psychologically to get better. XMRV/MULV destroys his myth that has made him famous around the world as the most hated psychiatrist in modern times. He took that risk and still dances around the trip wire, fully aware the land mine of science may soon explode.

    Rehabilitating us back into work (biologically impossible in ME/neuro inflammatory disease without treatment) would please Professor Peter White 'CFS/ME' expert ( a psych) because he is UK government advisor to the Department of Work & Pensions, the DWP. More 'CFS/ME' back at work, less cost to the state to pay them social welfare disablity payments. How do you put incurable people back at work? Create CFS patients who need no symptoms of ME/neuro immune disease to qualify for the diagnosis. Then use these people as 'evidence' ME is a biopsychosocial disorder. XMRV/MULV has nothing to do with biospychosocial disorders, they are dangerous retroviruses that make people very ill and need managing by neurologists, immunologists, haematologists to name but a few. This costs money. CBT is massively cheaper. Blaming the patient removes patients asking how did I get a retrovirus that has destroyed my career, family, relationship and future? Which is why Wessely was installed in place.

    The ME Association (and other charities) know this, but say little if anything about it. They never comment out right and inform and educate their members what is going on. Their agenda, is not the same as someone slaughtered through a sustained lie, who wants and needs justice. XMRV puts a spanner in the works for any government who has invested millions of tax payers money into a psychological causes for 'CFS/ME' and so any charity linked to them, will sadly give a half hearted reply with an interest about as great as a brief rain cloud passing in the sky. Say nothing (or little) and the news will die down. As it has. It becomes a non event. XMRV what? Ohh that doesn't exist does it?

    The UK system of health governance is an excellent warning for 'Obama Care' over in the US. When 'choice' is made on your behalf and solely by the government, and there is no other choice for citizens to enter private health care via insurance policies (regardless of wealth) then you are at the mercy of politics and policy decision makers for dictating to you, what you deserve and what you get as a poltical prisoner. This is highly dangerous when corruption is part of the system. All governments are corrupt, yet the UK used to rule the world, literally. We are more adept at not showing how corrupt we are, to the extent we can control what the public knows by controlling the media. We have a huge history in dominating other people through our experience of being an empire, and are thus brilliant at dominating our own people. To eradicate ME, we need a weapon, and the weapon is disinformation through the use of a repeated statements, via theories. Psychiatry and it's manufactured beliefs over the invention of 'CFS/ME' has made a retroviral disease epidemic, invisible.

    Only Americans, (ironically through the state not caring) are free to chose the path to walk and crawl. Yesterday there were at least 130 links for the XMRV MULV story. In the UK, there was 1. (A right wing newspaper no one takes seriously). ME patients are not believed, full stop. Suggesting a retroviral link to ME is not going to happen until the Americans declare ME is caused by XMRV/MULV and ban blood donations. CFS patients do exist and are believed in the UK. CFS here is largely consisting of ex Z list celebrities, people with idiopathic chronic fatigue/burn out, those highly stressed, recovering drug users/anorexics and a larger group of mentally ill people. These people DO make the newspapers, TV and radio shows, because (as we knew) they never had chronic untreatable neuro immune disease, XMRV/MULV.

    Somewere inside that CFS/ME group lies the ME patient in a house, waiting for the big day. The ME Association represent the CFS/ME group, not ME. It is pointless telling people mentally ill, or off work for 3 months with 'CFS' as a insomniac head teacher they may have an infectious deadly retrovirus as it's probably not accurate. America is where the truth will come from. Yet ironically, America started the lie and gave birth to CFS at the CDC. As easy as it is to become frustrated and furious at the UK's total silence on XMRV/MULV from 'ME' charities, it's to be expected and to be ignored once one knows the reasons for it. Anyone with ME, knows these reasons.

    The ME Association signed up (literally) to a belief system that is not compatible with XMRV/MULV being the sole cause, and so they will only begrudgingly accept this very late in the day Ultimately it doesn't matter and it's futile to worry over a charity that is a government mouth piece, alongside AFME/AYME. What matters is the WPI, and the FDA/NIH/CDC doing more science. Money does strange things to people, and the lure of assumed 'status' and influence also. The influence is there for the ME Association and the power somewhat, but that has run its course and it's increasingly obvious a new direction is needed.
  13. bullybeef

    bullybeef Senior Member

    North West, England, UK
    It seems to have been forgotten that the Plos One paper (Erlwein/McClure et al) was submitted and accepted in 3 days, and they actually paid for the print, it wasn't even peer reviewed!! How is that classified as an accepted study? They may as well as put it in my local newspaper!!

    We know the Van Kuppeveld study had more holes than a Swiss cheese, and that their samples were shown to be positive after the fact.

    According to Mindy, the Bishop study seemed to have found MLVs, but thought is wasn't what they was looking for! How odd it that?

    How any of those can be even ranked alongside people like Alter and Lo is disrespectful, and a disgrace. Alter is showing them too much respect that they obviously don‘t deserve, and someone needs to tell the likes of McClure to jog on!! This is non of their business anymore, because even a layman like myself can see through their nonsense. They cannot even be civil, and complimentary even in defeat.

    Phoneys and con men the lot of them.
  14. Sherby

    Sherby Sherby

    London UK
    As I understand it, "validation" and "replication" have clearly distinctive meanings in scientific jargon. Someone please correct me if I'm wrong in the

    Thanks you are able to explain the point i was trying make so much more clearly.
  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    MEA statement thread already up and running earlier today - please can we merge?

    Hi all,

    Moderators, there is already a thread on the MEA statement posted earlier this afternoon - please can we merge the 2?

    Thank you.
  16. serenity

    serenity Senior Member

    this is just awful, i really feel for you guys. i certainly hope we are not already Old News!
  17. Dolphin

    Dolphin Senior Member

    (I'm just an ordinary member of the MEA so have no vested interest as such)
    How are the MEA partly funded by the DoH? I recall them gettng a grant a few years ago for their helpline but then it ran out. But I have seen them take lots of strong positions in the last 5 years against NICE, DWP, NHS Plus guidelines, etc. I don't see particular evidence that they are particularly restrained by grants. I think this statement was just written by Dr. Shepherd who takes a very conservative approach to treatments and it seems in particular XMRV/retroviruses.
  18. WithHope


    I am really very disappointed with this statement. I am in the UK and agree with others that the answers will probably emerge from America.
    Even the CFIDS association while still saying a lot more needs to be demonstrated to prove causality are at the very least welcoming and encouraging all new research and have acknowledged the potential shift in the field as a result of the Mikovits and Atlers studies. I dont know the history of the CFIDS association and appreciate that many people in America are disillusioned but I must say since October the 8th I have followed their reviews and webinars very closely and found them to be the most balanced, objective and professional (donors and governments like professional!).

    But alas we do lack a very effective international advocacy organisation.

    Still the statement from MEA has left me cold, uninspired and defeated..
  19. jace

    jace Off the fence

    I would just like to point out that there is private medical insurance (BUPA, PPP etc) and private hospitals and physicians in the UK. Because we all used to believe the NHS was a good service, only a few paid for medical insurance in order to be able to access private care. However, as the NHS became more over stretched and over managed, more people are taking out private cover.

    In the 80's and 90's I worked in both private and NHS facilities, and at that time would have chosen the NHS for care of my family over private institutions anytime. Now, things are different (thanks, Maggie).
  20. Adam


    Sheffield UK
    With Advocates like Sheppard who needs enemies.

    Servile is the word that comes to mind.


    servile [sr vīl]
    1. too obedient: too willing to agree with somebody or to do whatever demeaning thing somebody wants

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