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Dr Esther Crawley discusses XMRV and WPI, March 2010

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Dx Revision Watch, Aug 18, 2010.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    ***********************************************************************

    ETA: 20 August 2010 Supersedes all previous versions

    ***********************************************************************

    May be reposted if posted in full, unedited and with the following link to source given:

    http://wp.me/p5foE-31g

    or

    http://meagenda.wordpress.com/2010/08/18/dr-esther-crawley-discusses-xmrv-and-wpi-march-2010/

    Please note that a copy has already been sent to Dr Judy Mikovits - so please do not forward duplicates.


    Dr Esther Crawley discusses XMRV and Whittemore Peterson Institute (WPI), March 2010

    Part transcript: Presentation to Dorset CFS/ME Society Annual Medical Lecture: section on XMRV.



    ************************************************************

    Dorset CFS/ME Society
    Annual Medical Lecture

    27th March 2010

    The Future of Research in CFS/ME

    Esther Crawley


    Intro:


    Its a great pleasure to be here, everybody, and Im really glad actually that my talk actually fits in very nicely with what Williams just said Phew!

    Im going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So youll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on Epidemiology.

    [...]

    [Slide]

    I couldnt resist talking about XMRV. I think we have to know about whats actually happened and I will discuss that as well and what the implications are.

    [...]

    [Rest of intro and presentation skipped.]

    Approx 27 mins in from start of presentation:

    [Slide]

    XMRV. OK, so in the next, last, remaining bit of the talk I want to summarise whats happened about the XMRV story for you. I think its really important that were all informed about it.

    Many of you will have woken up and read this story, in fact I knew about it 24 hours before it was about to break Has science found the cause of chronic fatigue syndrome? were all very excited and hopeful this might give us something we can treat. Great.

    [Slide]

    Dont you think this is the most beautiful picture? Thats the XMRV virus. I dont know how they get those colours on them very beautiful.

    Now this is the Centre that reported it. Do any of you notice anything about that picture? XXXX youre not allowed to say.

    Sorry?

    Member of the audience: Sunshiny?

    EC: Sunshiny, yeah. Its in Reno, yeah, yeah. Anything else? Its a bit far away.

    Has anyone looked at the website? Isnt that interesting? That doesnt exist. Thats a fake picture its what they would like to exist, when you donate money, when you go on the website. I thought everybody knew that! Yeah, sorry? This is Dorset.

    OK. The Centre isnt built. Thats their picture of what they would like to build and when you go on the website it has Please donate.

    OK. What do the Lombardi group originally show?

    [Slide]

    OK. This is a complicated slide. Im just going to take you through bit by bit because its really important when we look at all the research evidence.

    OK. The gag sequences the DNA thats associated with these particular type of viruses so they use PCR. PCR is basically when you get a tiny bit of DNA and you multiply and multiply and multiply and then you run it on a gel and see if its there. And what they found, and youll all remember these figures, Im sure, is that they found it in 68 out of 100 [Ed: 101 on slide] chronic fatigue [sic] patients and 8 out of 218 controls.

    They then looked in the cells and they found the protein in the cells and then they looked at whether its infectious. Now I have to say, this bit made me slightly worried so they looked to see whether this virus could infect other cells within the lab and they showed that its infectious and they also looked at what happened if you put the virus with other cells in terms of did it develop an immune response?

    [Slide]

    And these are some of the pictures they showed. So when you multiply out the DNA, you then run it on a gel and you tag it with a thing that shines I did my PhD doing this, I can tell you all sorts of awful stories of gels breaking and all sorts of other things going wrong. But these are the chronic fatigue [sic] patients you see all these lines, here? Thats that gag sequence - here and here thats the end of the line and these are the controls.

    Then they looked at the expression in cells and you could see it. And then they looked at the infection and this is the infection happening here.

    Now this paper went out for review by virologists not by clinicians and thats a very important point and it was passed and it was published.

    [Slide]

    And this is what they said on their website and I think this is kind of interesting:

    We have detected the retroviral infection XMRV is greater than 95%

    Where did the 95% come from? Did anybody notice the 95%? Can anybody remember the percentage they found it in? Yeah, 66% [sic], slightly less.

    OK. Says on the website 95%The current [working] hypothesis is that [XMRV] infects these cellsand I found this absolutely terrifyingviral chronic fatigue syndrome causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.

    OK. Have they shown any of that? Have they shown increased risk of opportunist infections? Have they shown a defect in the immune system thats actually going to affect someone rather than just in a cell lab plate?

    [Slide]

    No. But thats whats on their website. Thats what they say theyve found. So what happens? The research community runs to replicate the work.

    [Slide]

    OK. And youll all remember when this first paper came out Failure to replicate this is an English paper [Ed: the McClure PLoS ONE paper]. Well obviously this is wrong because they didnt use the same techniques and it wasnt the same patient group.

    [Slide]

    So in this particular experiment, they actually characterised the patients.

    Now on the original paper, they say that the chronic fatigue [sic] patients were well-characterised but they do not describe them at all. We dont know how many were girls we dont know how manygirls! Im such a paediatrician we dont know how many were female. We dont know how long they had had the illness for. We dont know who diagnosed them and we dont know whether they had any blood tests to exclude other illnesses.

    In this one, [Ed: the McClure paper] they actually had all the exclusion stuff excluded, they then used the DNA sequence. They had positive and negative controls. Why do you need positive and negative controls? Yes, so youre worried that maybe when you do PCR itll pick upyouve all seen crime scenes, right? So PCR will pick up one bit of DNA, so if youve got a bit of DNA in your solution or something like that, you must have negative controls because you need to be certain that the DNA has come from the samples - not from your lab solutions.

    Yes. OK. And you must have positive controls to make sure your experiments work.

    They used a virus free laboratory. So they did it in a laboratory that had not had the virus in the past and they blinded the person doing the PCR. Does everyone know about blinding? So what they did, was that the person that was reading the gels didnt know whether they were patients or not, because its really easy on those gels to over-interpret what you see.

    OK and their results, you might all remember, they didnt find any out of 186 patients none of them had chronic fatigue [Ed: corrects herself] XMRV.

    [Slide]

    And then a few days later, this one came out. This one had several people from England Jonathan Kerr and so on. And theyre very open they said, John Gow these are all people that were collaborating with they said we wanted to find chronic fatigue syndrome we wanted to find the XMRV virus. We wanted to we looked hard.

    Now the criticism of the previous paper was that they hadnt used the same techniques, so in this one they used the same techniques. They had 170 patients, 395 controls. You can already see the sample size is much bigger and they did both PCR and looked at the serology.

    They found none in 299 samples of patients had chronic fatigue [Ed: corrects herself] had XMRV. And although they found whats called neutralising activity they looked at this further and suggested that the immune response was actually related to other viruses and not to the XMRV.

    [Slide]

    And then this was published a couple of weeks later [Ed: BMJ paper] from the Dutch group. Again, a very well described Dutch cohort smaller, 76 patients 69 controls. And what they did, they actually went completely overboard with trying to find it. They used very, very sensitive techniques that should have detected if any was there at all, they should have detected it much more sensitive than the original paper and they looked at a variety of DNA and they tried several times to improve the sensitivity all samples were negative for XMRV.

    So what do you thinks going on?

    Member of the audience: Publicity.

    EC: Publicity

    .I have actually given a clue.

    Member of the audience: Money?

    EC: Sorry. Moneymoneymoney

    Member of the audience: XXXX wants to tell us.

    EC: OK, go on, XXXX

    ECs young son (in front row): Did they all do it from one place?

    [Slide]

    EC: Yees! The first group actually, the question is, was the first group chronic fatigue syndrome? And eventually, when they were asked, they told the research community that, this is in Lisbon, at the end of last year, that all the samples came from an outbreak of chronic fatigue syndrome in one village in Lake Tahoe.

    And when you actually go and have a look at all the research data around that outbreak, everybody at that time thought it was a viral infection. And nobody could find the virus.

    So most of us think that that was probably the issue it was probably a viral outbreak that has certainly caused chronic fatigue syndrome but is not necessarily going to be relevant for us here in the UK.

    [Slide]

    Its not clear about the PCR operator, the person that looks its not clear from the paper, whether they were blinded. There might be issues about whether you work in a virus free lab, remember they showed that this was infectious.

    And theres a big question here [Ed: indicates on slide] this XMRV virus was initially described with prostate cancer and the prostate research community has shown this in prostate cancer in two studies in the USA. These are different labs in different studies but no association in Europe.

    So maybe this is a virus thats important in America but not important in this country its not clear.

    And I think this is of interest. Within a week of their paper being published they produced a test for the XMRV virus at $650 a test. [Ed: Slide reads, at point 4: Conflict of interest?].

    And if I was developing a test, I would declare that as a conflict of interest on the paper Im developing a test for this. Then people can make up their mind about whether it has affected the results. We dont know, it wasnt declared theyd produced a test.

    [Slide]

    Why are patients so upset?

    OK, well I dont know and youll probably be able to tell me more than I can tell. But I think when they first publicised this they went on everything, lots and lots of American television.

    [Slide]

    [Reads from slide]

    Vindication they said, This [new] report has intrigued scientists, been seen as vindication by some parents [Ed: corrects herself] patients and inspired hope for treatment.

    Well you know, the history of this condition is that patients have not been listened to, theyve been dismissed, theyve had a terrible time and if a virus comes along as a cause, that is going to be seen as a vindication I can understand that.

    And its very disappointing, isnt it, the negative replications?

    [Slide]

    But I do think that theres been other stuff thats been going on that I have particular difficulties with. When I prepared this talk for an infectious diseases conference, I went through and I just got some quotes off the web from the research team.

    [Slide]

    Look at this:

    [Reads from slide]

    Here youve got your immune system working well and the virus and the immune system are coexisting just fine and then some other bug, whether it be Lyme, a flu, anything gets youand then youve just tipped the scale to where your immune system cant handle [XMRV] or anything, and every day youre seeing new infections.

    [Slide]

    And then at one point, rumour has it (and I couldnt find any evidence for this) that they started to suggest that patients with chronic fatigue syndrome should have anti-retrovirals, ie HIV drugs.

    Theyve taken that back, and this is all I could find:

    [Slide]

    [Reads from slide quoting Dr Judy Mikovits; the "she says" refers to Dr Mikovits]:

    While its not advisable to take highly toxic anti-retrovirals [without tests confirming effectiveness], she says some available therapies may help, including: immune modulators; anti-inflammatories, because inflammation activates XMRV, things that improve natural killer cell function; medications that help [level progesterone levels, because progesterone up-regulates XMRV in lab tests]; avoiding stress.

    It appears and this really upset me, OK. All of their studies are in adults. OK, all in adults. And then they say:

    [Reads from slide]

    Early infection in children can lead to more severe disease later on.

    Early detection?

    Oh, thatll be that test that they produced for $605 [sic] a pop.

    [Reads from slide]

    and intervention important to keep viral loads from getting high.

    I find that really frightening. If I had a child with chronic fatigue syndrome and I read that on the web, the first thing Id do, Id go and buy the test, and the second thing Id be doing would be phoning an infectious disease doctor which is whats happened and ask about anti-retrovirals for my child, having read that.

    So I do feel as researchers, we do take some responsibility for saying This is a first paper! Lets wait and see what happens.

    You know, I think its really interesting, it look likes they did find something in a group of patients and we havent found it here. Thats really interesting and is deserving of more research. But lets just say, its interesting at the moment, rather than all of this speculation, which I think can be very harmful for patients.

    [Slide]

    The future for infection

    OK, I gather that this may well already have happened, not been published, the way forward in these things is to replicate the studies in both labs and try and look at why there are differences.

    I think it may be important for a subtype of chronic fatigue syndrome.

    I very much doubt it effects all of them, as they claim.

    It doesnt appear to be important in this country.

    And theres actually very beautiful research which we need to understand more, looking at the relationship between genetics, infection and other things like mood.

    OK. After a whistle-stop tour of most research on chronic fatigue syndrome, this is now my summary slide this is what Ive talked about.

    [Slide]

    There are two arms for research in chronic fatigue syndrome and I dont believe that one replaces the other. The funding for both arms is different in this country and they both need to be done together and both influence the other.

    [Slide]

    The first is important for providing services and treatment:

    We need to know more about how common this is.

    We need to understand who it affects.

    And we need to know about the different types of chronic fatigue syndrome.

    We need to understand how the different types influence treatment.

    We need to know much, much more about the impact of this devastating condition on patients and carers.

    The second one is that we need to know more about the aetiology, about the causes of this condition and in my view, the fastest way forward is to use the large, very large sample sizes that we have available in this country to conduct rigorous genome-wide association studies and Im not so certain about the role of infection but I do think there is an interesting story with XMRV that we need to get to the bottom of.

    And it just remains for me to thank my funders Im funded by the National Institute of Health Research and my Clinician Scientists Fellowship, the Linbury Trust, Action for M.E. and Im the Medical Adviser for AYME.

    [Slide]

    And this is where I work.

    Thank you very much.

    [Ends]

    ************************************************************

    There was a Q and A session which included questions about the RNHRD NHS FT/University of Bristol Lightning Process pilot. I am given to understand that Alastair Gibson (Withinspiration ASA adjudication, 16 June 2010) was present. Gibson had identified himself, in March, on his website, as one of two Lightning Process practitioners involved in the Bath RNHRD NHS FT/University of Bristol Lightning Process pilot study in children 8 to 18.
  2. jimm

    jimm

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    there an error here, half way through the abbrev switches from EC to EG and a couple of typos and spelling errors, just thought would mention this as it could be important
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thanks, would you like to point out the typos and spelling errors, please and edit out your entire quote from your post - to avoid that being reproduced?

    Perhaps readers might prefer to wait before reposting until jimm has responded.

    Suzy
  4. eric_s

    eric_s Senior Member

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    The Lightning Process... I don't even want to know what that is. Sounds like something Scientology might do, straight out of crazy land.

    Hopefully from September 8th on we will know enough about XMRV.
    Why that animosity against the WPI from someone who works for an ME charity? I can understand if the negative studies make you cautious, it was the same for me, but here you get the impression she really wants to see the WPI be wrong.
  5. V99

    V99 *****

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    Disgusting and disgraceful. And she has the cheek to talk about children, the same group she is about to put through an abusive unethical procedure.
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ eric_s

    Dr Esther Crawley is not employed by AYME but functions as a medical consultant/advisor.


    There are a number of current threads on Lightning Process, in general, and the pilot study in particular on Phoenix Rising Forums:

    April 2010 Dr Frivoldi, MD blog article by Cort Johnson

    http://www.forums.aboutmecfs.org/blog.php?b=364

    Article: An MD on the Lightning Process

    http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process

    Lightning Process to be Evaluated in Research Study on Children

    http://www.forums.aboutmecfs.org/sh...to-be-Evaluated-in-Research-Study-on-Children

    My son & i are giving the lightning process a go on this week

    http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week

    There are also a number of postings and reports on my website:

    Background report here: http://wp.me/p5foE-2Vt

    -------------

    Dr Esther Crawley

    Dr Crawley, FRCPCH, PhD, is a Senior Lecturer at the University of Bristol, a Consultant Paediatrician and clinical lead for the Bath CFS service. Dr Crawleys specialist CFS service for children and adolescents is reported to be the largest regional paediatric service in the UK and also provides services nationally.

    Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group and gives presentations around the NICE guideline CG53 and the CFS/ME Clinical and Research Network.

    Dr Crawley had chaired the CFS/ME Clinical Research Network Collaborative (CCRNC), now reformed under the new name BACME, for which Dr Crawley continues as chair.

    Dr Crawley is a member of the MRCs CFS/ME Expert Panel.

    In the last couple of years, Dr Crawleys research team has been awarded considerable sums of funding for CFS studies and Chronic Fatigue studies in children including a 873,579 NIHR Clinician Scientist Fellowship award, last year. She has also received funding from patient organisation, Action for M.E. (49,650).

    Grants awarded to Dr Crawley during 2007-09 here: http://www.bristol.ac.uk/ccah/grants/
  7. ukxmrv

    ukxmrv Senior Member

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    Eric,
    It's all about power, money and careers here.

    We have 2 "ME Charities" which are solidly behind psychological causes and therapies - although they lie through their teeth to patients.
  8. Esther12

    Esther12 Senior Member

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    All that would be fair enough if she was also attacking the Lightening process in the same way. If she was also attacking the unsopported psychological claims about CFS...

    How on earth you can attack the way the WPI presents itself while excitedly spending money on a trial for the Lightening Process?

    I love the fact that it's acceptable to claim CFS patients seem to lack personal insight. I cannot believe what quacks we're stuck with for CFS research.
  9. eric_s

    eric_s Senior Member

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    Thanks, Suzy. I misunderstood when Dr. Crawley said "And this is where i work". The UK situation sounds horrible. In Switzerland at least we are left alone, to me that seems still better. I hope Judy will be able to bring some exorcism to the UK on the XMRV conference. With some luck all of this will be over then. I'm also curious about the swedish study.
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ eric_s

    I've taken the line over and inserted [Slide].

    Thanks - I can see that without reference to the original, that is ambiguous.
  11. floydguy

    floydguy Senior Member

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    Forgive me if I am a little dense but how can these people keep getting such large sums of money for research and treatments that don't work?
  12. Wonko

    Wonko Senior Member

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    pretty much just pure nasty - I dont know about the US but in the UK you dont build research faciities (or get loans/mortgages to do so) on the strength of a test with no real market - you also dont do it out of website donations - so I dotn see how anyone could make and believe thats the primary motivation for the WPI

    so at this point I'll stick with just pure nasty vicious malicious selfserving BS
  13. urbantravels

    urbantravels disjecta membra

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    Can I come and live in the magic bubble over the UK that stops viruses from getting in? It sounds like such a safe place to be!

    Honestly, I can't believe how often the theme "We don't have XMRV here" gets repeated when certain UK researchers get up on their hind legs.
  14. ukxmrv

    ukxmrv Senior Member

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    Why don't you lot (USA XMRV+) should just hop on the first plane over here. XMRV wouldn't be allowed in - and then you all would be cured. Simple!
  15. Sunshine

    Sunshine Senior Member

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    Good question Floyguy.

    How can people continue to do this??

    1) Lie. Say a harmful therapy works by either lying outright, or selecting mentally ill people without the illness who are immune to it's harm and claim they are improved short term. Easy.

    2) Place 'experts' at the forefront of ME research who says ME does not exist and ME is hysteria. All genuine doctors think WTF? And take no interest in the 'hysteria' condition and thus the 'experts' are free to slag ME patients off without being questioned by fellow medics. This happened.

    3) Create a fictious illness called CFS/ME. In the UK CFS/ME is a mental health disorder created by the psychiatric profession apparently treated successfully with CBT and GE. In reality, it does not exist. There are no diagnostic markers for it, just as the American 'CFS'. It is a label, a dustbin diagnosis.

    4) Files on ME research owned by the Medical Research Council are covered under the official secrets act until 2030. This was extended until 2070. ME (a neurological disease) was unexplainably placed within the CDC's, 'Chronic Fatigue Syndrome' and the new 'CFS/ME' possibly to cover up the 'secret' that neededto be kept secret for a reason. No one will ever know what this is, it's classified.
    (Logic would say, vaccine contamination or biological weapons research that went wrong. Who knows).

    That probably answers why all funding goes to psychiatry even now we know about XMRV. The links to the origins of neurological ME was not meant to have been made public until 2070 when all ME patients are dead. If the original genuine patients are dead, then the cause would highly unlikely be detected in tired people with 'CFS/ME' who don't have the illness. Same as if the CDC turned a less agressive form of HIV into tiredness and never had an HIV test. HIV would be lost and anyone could claim to have HIV who was tired. With no test, the speculation HIV was 'real' would end, and HIV patients could recover with CBT and Exercise. Sound familiar?

    To the fury of the UK government the WPI found XMRV, published the research, got the FDA to replicate their findings and are even offering a test to the public. In time, WPI will release more research showing certain immune cells do not work, are infected with XMRV, and that 'CFS' patients share some nasty things with other diseases that people understand and take seriously which would classify 'CFS' as a neurological disease. This is what the CDC are terrified of, and the UK too.

    The public will work out either we have been lied to on purpose, or the medics are stupid. Stupid people don't get through medical school. Period. XMRV thus needs to be seen as 'contamination' in the press and online (with no proof needed) or nothing to do with CFS by the CDC and other government health agencies. This has happened. All part of the operation to vanish CFS as a neuro disease.

    UK charities are infiltrated by psychiatrists and people paid to deceive the public. No influential 'CFS/ME' charity is recommending getting an XMRV test in the UK. They all use the same one liner that even if XMRV is the cause, 'there is no treatment anyway'. A very strange comment akin to a Cancer charity telling it's members not to get tested for a new suspected Cancer, as there is no treatment anyway.

    That's all they (Anti XMRV brigade) have left. Nothing at the bottom of the barrel. What else can they say? Just use ridiculous illogical posturing as a defence and hope no one notices. This has happened.

    The only thing the authorities can do is fund psychiatric research for CFS/ME more and more, whilst refusing all biomedical research into neurological ME, a disease that is actually XMRV induced XAND.
    This way, they can claim a tiny percent of ME patients have XMRV. The truth is all ME patients have XMRV, but a tiny percentage of 'CFS/ME' patients have XMRV. In America ME is lacking, so a tiny percent of American patients with 'CFS' will have XMRV, and people with neuro disease (all told they had CFS) wil have XMRV.

    This is why the CDC refused to allow Americans to use the word ME, in the late 80's and a group of now infamous non specialists in USA ordered that Post Viral Fatigue Syndrome/ME would become CFS.
    Very soon, the CDC made CFS a psychosomatic disorder and Strauss and then Reeves took over.

    The entire project was planned and we are the rabbits in the lab, or should I say, the mice.

    CFS is a project as it's a fictious disease label, no test or markers. All the diagnostic criteria for CFS are unspecific. Unlike Lupus, Unlike MS - two other conditions with no 'proof' for causation whatsoever. Lupus and MS do have unique properties that make them a disease though. Yet these properties were found in 'CFS' also, long ago.

    Cytokines, and NKC dysfunction.

    These two major dysfunctions alongside many many others could have made CFS easily a serious disease alongside lupus, but no. This was not allowed to be done and 5,000 research papers on biomedical abnormalities were not enough for the CDC.

    No other disease causes a Cytokine storm when exercising. No other disease has a Cytotoxic NKC function as bad as CFS, not even AIDS. Again not good enough for the CDC because if these biomarkers for CFS has been allowed to be used for diagnosing CFS, true neuro immune disease sufferers would be being researched and monitored and not simply people who were chronically tired.

    That was too risky, and people may have found XMRV.

    The UK public genuinely believe CFS/ME is a 'common' disorder that most people recover from. The reality is, ME is not common at all, but people think ME is 'CFS/ME' now. In the UK you can get a diagnosis simply by being tired. Atheletes, over stressed mothers, academics are all now claiming they have CFS/ME, and appearing on TV saying they are cured by doing CBT.

    None of them have any symptoms at all of neuro immune disease, none of them have any tests, none of them have chronic severe pain, autonomic dysfunctions, cardiac issues etc. Yet this is what ME does to people. It destroys lives, it doesn't cause a syndrome of chronic fatigue.

    The CDC and people with vested interests made CFS. Like a movie, it can only be played one way, and tragically all of us are in the cast of the film, being 'played' by the CDC and our own governments if we are given this horrific label.

    CFS is a label of sorrow and in many severe patients, terror. People die from the label, commit suicide and wish they'd never been born with the label CFS. Yet, it's a brilliant tool for people who need you to feel like this. They want you to feel like this. If you become depressed, hopeless and give up then you are exactly what they accuse you of. Very smart of them.

    Some believe 'cured' people who are in newspapers and TV after being sick for a few months are government plants or vulnerable mentally ill people easily manipulated, who to turn the attention away from XAND/XMRV. The reality is ME, will be shown to be a retroviral infection like HIV that is infectious and can be a disease people are born with. People 'cured' from neuro immune disease with CBT and exercise are nothing to do with this disease state whatsoever, and are actors and actresses in a political game of Eye Spy With My Little Eye, Something Beginning with X......and LP. Youtube search Lightning Process ME CFS. This is history in the making. Watch the 'saved' rescued patients speak to the camera on the account names: thephilparker & ukeft .

    Save these videos before they get pulled and save them for prosperity. We have CFS body doubles reciting how the are cured with evangelical powers created in their own mind. All deligitimises ME and neuro immune disease with the label CFS. Which is why it has appeared, suddenly since the Dr Kerr research and then the WPI being formed.

    People will now ask questions, how the hell did I end up with a mouse derived virus, that mice are immune too unless genetically tampered with in a lab for 'research'. It's obvious XMRV is a 'mistake' created decades ago that has spread around the world, maybe from around the 1950's. Infecting tens of millions of people all these years later with an incurable infection that increases cancer risk and causes brain inflammation is probably not a good think to own up to. It's best to deny. If the people who caused this epidemic weren't still alive, UK research on ME would not need to be an official secret.

    By making this XMRV 'mistake' the sufferers own fault through the label CFS , by 'proving' this with psychiatric theories on CBT and exercise....no one would ever have found XMRV as the funding was prevented by the Medical Reseach Council in the UK. The same goes for the CDC and NIH.

    WPI have opened up an enormous hornets nest, and activated science that was planned never to be undertaken in our life time. Which is why no one in the UK is undertaking anything without state permission. All disinformation on XMRV both in CFS and Prostate Cancer is coming from the UK.

    America has a private, not state funded health care service. For this reason only, was XMRV going to be discovered by private researchers, which is what occurred.

    The chances of a CFS mother being married to a wealthy businessman (Whittemore's) who has influence and power, who's mom then went on a crusade to find out why her daughter was sick, who just happened to get access to the best CFS doctors in the world, who's doctor just happened to have access to stored CFS blood samples, who's colleague just happened to be a Cancer expert, who just happened to have a Colleague who has just found XMRV in prostate cancer, who then went looking herself and in 18 months found in in CFS.

    Is literally, a miracle chance 1 billion to 1 finding that the CDC and the UK health service could not envisage. The only thing for XMRV denialists to do is make sloppy failed half hearted attempts to find XMRV in a method that will not work yet make sure not to do a replication study with identical methods to the WPI. This is what happened.

    If the Whittemore's had not been born, we'd all been left with CFS and all died young or lonely and sick.
    This was the plan, and the WPI just blew it to pieces and let in the sunshine.

    :victory:
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Corrections to transcript

    OK. Last night, I made the following edits to the partial transcript:


    1] Corrected "EG" to read "EC".

    2] Disambiguated the paragraph:


    They’ve taken that back, and this is all I could find:

    [Reads from slide quoting Judy Mikovits; the "she says" refers to Dr Mikovits]:

    “While it’s not advisable to take highly toxic anti-retrovirals [without tests confirming effectiveness]” she says, “some available therapies may help, including: immune modulators, anti-inflammatories because inflammation activates XMRV, things that improve natural killer cell function; medications that help [level progesterone levels, because progesterone up-regulates XMRV in lab tests], avoiding stress.”

    It appears – and this really upset me, OK. All of their studies are in adults. OK, all in adults. And then they say:

    [Reads from slide]


    (Text in square brackets is verbatim text from the slides from which Dr Crawley was reading, but where she omitted some words for brevity. These are inserted for context, inside square brackets, in line with UK convention for omitted text.)


    3] Disambiguated the line "And this is where I work."

    4] Corrected a number of typos that were not indentified by Spellchecker.

    -----------------

    I suggested that readers refrain from reposting until jimm has indentified the typos and spelling errors he says he's spotted - but he's not come back to us yet and I hope I have now picked up on most of them.

    If you have already reposted on a board where edits can be made could I ask, please, that you replace with the text above. I will maintain a clean copy on my site at this posting:

    Dr Esther Crawley discusses XMRV and WPI, March 2010

    August 18, 2010

    http://wp.me/p5foE-31g

    @ jimm

    Could you please edit out from your own post the quoting of the entire text to avoid an uncorrected copy being published elsewhere?

    Suzy
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Extract from BMJ Podcast (Wessely, Crawley on CFS)

    Over in one of the several Lightning Process threads is a transcript of a recent BMJ Podcast in which Dr Esther Crawley and Prof Simon Wessely discuss CFS and its management. At one point Prof Wessely says (and he's said similar in media interviews):

    "...we're not going to do more and more tests... well what was the virus, because frankly, even if we found it theres nothing were going to do about it. Were in the business of rehabilitation."



    Lightning Process to be Evaluated in Research Study on Children


    http://www.forums.aboutmecfs.org/sh...dy-on-Children&p=102372&viewfull=1#post102372

    July 15th, 2010 11:09 AM

    Transcript of Dr Esther Crawley / Professor S Wessely
    BMJ learning Audio Module


    [...]

    Wessely: Treatment, very similar in large areas of medicine is about rehabilitation, its about, O.K., this has happened to you, youve been handed a particular hand of cards. Lets have a look at how you play it because there are good and bad ways of managing this illness. Now we start to look at all the secondary effects that have happened to you and a lot of people with CFS have got depressed, no question about it, and I dont mind, you know, that may upset people, but thats just simply true. We also know that there are a lot of people who've had depression are more at risk of developing CFS.

    So if people have got depression lets not ignore it - were gonna treat that. Some people got themselves into very unhelpful patterns of activity and you know, their activity management isnt very good - they do too much, get exhausted then they do too little to recover and thats not a very satisfactory way. Were gonna look at sleep hygiene can we improve sleep? Were gonna look at pain control were gonna look at this whole balance of rest, activity, sleep, energy and exercise. Were gonna look to make things predictable and so that theyre consistent over a period of time and then we are gradually going to look to steadily increase that over a period of what may well be weeks, more likely many months.

    All the time were doing this by saying look we dont really know why you got ill. We dont know! Were not going to lie you down on the couch and talk about your mother because its entirely irrelevant we're not going to do more and more tests... well what was the virus, because frankly, even if we found it theres nothing were going to do about it. Were in the business of rehabilitation. Its an approach that works and its an approach that works in many analogous conditions particularly for example chronic pain syndromes that are rather similar. It's about improving control of illness - its about improving management its about improving quality of life improving the control of symptoms and many people, and again Im quoting studies here, will do very well on this approach.

    [...]


    Full transcript here
  18. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Sunshine - that was an absolutely fabulous post - truly spot on with the situation here in the UK.

    You are absolutely right - only an independent facility in another country (USA), with huge financial resources and personal reasons for doing the research could have pulled this off. It is truly a one in a billion chance and the UK establishment never saw it coming. By continuing with their current stance the UK medics are beginning to look more and more desperate.

    I also find it so odd that so called intelligent scientists and practitioners in the UK could suggest that XMRV is somehow limited to the US!! What???? Like a retrovirus will ask permission to enter another country or show a passport???!! Almost everybody flies abroad these days, and I for one worked for a short periods of time in America here and there while I was living in London - before the illness hit. Perhaps I got it in Canada - I lived there also for a while. What a bunch of ludicrous charlatans.

    Also re bioweapons - I really doubt there is such thing ever as a secure lab. If a bug is created it will get out eventually - to everyone. No wonder the UK lot are so obsessed with contamination!
  19. Mark

    Mark Acting CEO

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    "...we're not going to do more and more tests... well what was the virus, because frankly, even if we found it there’s nothing we’re going to do about it. We’re in the business of rehabilitation."

    If you check out the last few videos in the 'Psychiatrists' section of the Video Library (in the advocacy forum), I think it's the one before last that features the full audio from this interview.
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thanks Mark,

    If not, it's available here from the BMJ site (be aware it's around 14MB):

    http://feeds.bmj.com/~r/bmjlearning...ue_syndrome_ME_an_update_for_primary_care.mp3

    Suzy

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