1. Patients launch a $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!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

Where is the UK coverage of the FDA/NIH paper???

Discussion in 'Action Alerts and Advocacy' started by V99, Aug 23, 2010.

  1. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Hi Sherby,

    Here is the direct link to the Home page of the UK Medical Research Council's (MRC) National Institute of Medical Research.

    http://www.nimr.mrc.ac.uk/

    The research group’s lead scientists are listed under the Research link.
    There are about 50 of them including Dr Kate Bishop and Dr Jonathon Stoye – both retroviral experts it seems and who will be the UK representatives at the XMRV Conference.

    http://www.nimr.mrc.ac.uk/research/kate-bishop

    “In 2006 a novel retrovirus called xenotropic MLV-related virus (XMRV) was isolated from patients with familial prostate cancer. Prostate cancer is the most prevalent cancer amongst men in the UK, and hereditary prostate cancer is thought to account for 9-15% of cases. More recently, XMRV has been identified in patients with chronic fatigue syndrome (CFS). At this time, it is not known whether these diseases are linked to infection by XMRV.”

    http://www.nimr.mrc.ac.uk/research/jonathan-stoye

    They are 2 of the UK scientists who, along with Groom, Kerr and Gow and others, published one of the UK negative XMRV papers – although we now know that they do appear to have found MLV related-viruses in the CFS samples, as did Lo/Alter at the FDA/NIH, but did not realise the significance at the time. They all seem like good ‘guys’ to have on board.

    Although the study was negative for XMRV, Dr Mikovits has since reported that she found some of Dr Bishop’s findings in the paper very helpful for clarifying some points about host factors in relation to the WPI’s research.

    Kerr and Gow, 2 of the other authors, have been v much involved in biomedical ME research in the UK and Kerr in particular has had a close relationship with the WPI and other research currently funded with them in the US.

    The indication is then, that the MRC may have funded an XMRV research paper – ie a major UK medical organisation has now actually funded biomedical research into ME/CFS – (regardless of whether it turned out to be a –ve paper) - a wonderful, newsworthy fact in its own right!

    Dr Stoye and Dr Bishop are very well placed and look to be our best hope in forwarding serious, biomedical research into MLV related viruses in ME/CFS in the UK.
  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    I would have agreed with you a few years ago!

    However, one has to wonder, now that there have been at least 5 papers pubished on XMRV in ME/CFS - 3 negative and 2 positive - why the Science Media Centre has chosen to publicise only x1 negative paper (& BMJ commentary on it) - mysteriously the paper co authored by Wessley himself who is a Science Media Advisor on the very site which has published it.

    Where is the mention of the positive WPI/NCI/CC paper and the positive Lo/Alter FDA/NIH ? Conveniently invisible to the naked eye - on this media feed site at least.

    If nothing else, he is certainly v good at promoting himself and deleting the opposition.
  3. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I posted on Independent STD thread as Newshoundfreak. Strange that The Independent covered the delay in the Alter/Lo paper but not the paper itself? In their original article they said that 'scientists' had told them that the Alter paper was delayed because it was seriously flawed!!! Of course Newshoundfreak asked them if they would perhaps disclose their 'scientists sources'. A couple of UK Psychiatrists/Psychologists and one virologist spring to mind.

    No prizes for guessing.
  4. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Well done Adam/NewsHoundFreak! I hunted down this article and checked out your comments - v clear, concise and to the point I thought. Heh heh, wonder what they'll do now when the (reportedly) positive UK study is announced?
  5. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Thanks pictureofhealth. I wonder, but to tell you the truth, I have not got the foggiest idea.
  6. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    The Science Media Centre

    Thanks pictureofhealth for that info, will hopefully look into it tonight if i get a chance. Got to repair my daughters PC again.
    Running out of food and no clean dishes have become priority.

    By chance found a small piece of info regarding The Science Media Centre as below.

    CORPORATE COLLUSION?
    Professor Malcolm Hooper Eileen Marshall Margaret Williams

    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm





    7. The Science Media Centre

    The Science Media Centre (SMC) was set up under New Labour nominally as “an independent venture” whose goal is “to help renew public trust in science by working to promote more balanced, accurate and rational coverage of the controversial science stories that now regularly hit the headlines”.
    ( http://www.sciencemediacentre.org/downloads.consultationreport.pdf ).

    Other people see it differently: in The Guardian on 11th February 2003, Professor David Miller of Strathclyde University was critical of the SMC: “The Science Media Centre is not as independent as it appears; its views are largely in line with government scientific policy. 70% of its funding comes from business, which could be said to have similar interests”.

    It is funded by, amongst others, the pharmaceutical companies AstraZeneca, Dupont, GlaxoSmithKline and Pfizer and also, perhaps surprisingly, by The Royal College of Physicians, although perhaps it is not so surprising when one knows that a Past President of the Royal Collage of Physicians, Professor Sir George Alberti, sits with Simon Wessely on the SMC’s Scientific Advisory Panel. It is this Science Advisory Panel that guides the SMC.

    The SMC’s Director is Fiona Fox, who has diligently used the SMC to promote the views of industry and to launch fierce attacks upon those who question them. The SMC operates like a newsroom, providing journalists with nuggets of scientific information that conform to “policy”; it also runs a range of activities, including “media training”.

    Wessely is on record as saying about the SMC: “We need to defend scientific expertise as a basis for sound policy decisions”.

    In its “Consultation” document, the SMC sets out what it will do:

    “The SMC will promote itself to news-desks of national and local media on science stories that hit the headlines”

    “The Centre will offer: to refer journalists to the appropriate specialists on the story; to offer sound-bites and comments from key spokespeople; to offer opinion pieces for comment pages; to facilitate events in the SMC that will bring scientists and journalists together; off-the-record briefings with key figures at the centre of controversial issues who want to communicate with the media without being quoted directly; a team with strong contacts”.

    Such media manipulation is inevitably linked to the suppression of justified concern from a disempowered population, as has been shown to be the case – at least two broadsheet Health Editors have confirmed that it is not editorial policy to report biomedical findings in ME/CFS and that they will use only information on “CFS/ME” that they get from the SMC. Given the fact that Wessely is a member of the SMC’s Scientific Advisory Panel, such confirmation is unsurprising.

    Almost without exception, journalists have shunned biomedical research conferences on ME/CFS held in the UK, despite invitations and prior Press Releases.

    In its efforts to control the research information that the public should consume, the SMC has taken on key roles in the infrastructure of public communication used by the scientific and medical establishment. Is this because members of the public must never be permitted to question the supreme authority of scientists about disorders such as ME/CFS? Is it all about state control?

    Given the power and influence of such a media machine as the Science Media Centre, is it surprising that the long-established values of clinical observation in medicine and the voices of patients themselves are crushed, since they cannot hope to conform to industry-backed SMC “policy”?
  7. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    770
    Hi everyone. I think that the best thing for those living in the UK to do is to go and discuss this matter with their MP. MPs usually hold regular surgeries for their constituents. They will be seeing a lot of problems once the welfare "reform" bill kicks in. They need to know how government policy really impacts people in the real world. They are prepared to help. That is what they are there for. Cyberspace is tempting but MPs dont have the time to read our forums and if we just speak to each other we are not communicating with anyone in power. I know this may not be possible for those who are housebound but those who can get out can do this. I have been to my MP and discussed ME and the benefits system and the new viral findings and got a good response.
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Thanks Currer! I know it can look as if we are just talking to ourselves sometimes!

    I think some of the posts here are discussions that follow on from other threads where people have sent letters to various organisations or newspapers and have not had responses, or had responses but no action on the ground was taken, or are posting follow ups to letters sent to government departments by ME organisations or individuals where action has finally been forthcoming (eg the DoH have now announced a total ban of blood donations from all ME/CFS patients past or present, which appears to endorse the potential infectious nature of the illness - this is a huge step for the UK).

    In my case I did send a letter to my local MP querying the serious lack of central funding for biomedical research into ME/CFS. I received the standard Government response via the DoH press office. This was along the lines that ME was being taken seriously because several million 's had been invested in setting up national clinics for patients (but actually all that is being offered is CBT/GET which is not the same as a consultation with a neuro-immune Consultant offering retroviral therapy for eg. which is what may be more appropriate). I am now due to write again - since the XMRV and MLV's developments.

    It took a while for some of us to work out that the physician most closely associated with the establishment of the CBT/GET clinics actually works as a press advisor at the Science Media Centre & seems particularly good at promoting his own psychological studies and not mentioning positive retroviral studies!

    Polite letter writing and active 'campaigns' are in hand across the board as we speak - eg the ME Association is currently inviting and submitting evidence from UK patients who are having great trouble claiming incapacity benefits under the new system - which is up for review as so many including doctors have complained about it not working effectively. Check out their link on the website.

    I realise you may know most of this already. Apologies if this is the case! best wishes ..
  9. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    What do you do if your local MP is Iain Duncan Smith - The Work and Pensions Secretary who has designed the biggest shake-up of welfare system in decades. What the hell do i say to him? How do i get to see him, and even if i did see him he wouldn't listen anyway. He's the one cutting benefits under the new system.
  10. Sasha

    Sasha Fine, thank you

    Messages:
    7,554
    Likes:
    5,577
    UK
    Hi currer, and welcome to the forums! Glad your MP was interested. That's a very good sign. I'm going to wait to hear what happens at the big XMRV workshop next week and if it provides some new good stuff, take it to my MP.

    Unusual for things to be so fast-moving that it's actually worth me waiting a week or two! I'm hoping the workshop might come up with data specific to UK patients. I think that will make all the difference.
  11. Tom

    Tom windows exterminator

    Messages:
    94
    Likes:
    0
    It was the last Tory government the sealed the M.E files for donkeys years , oversaw the change in name fron M.E to CFS and let the politicisation of this disease run rampant.
    We would probably be better off joining a Trades Union , they do at least fight for their members rights and have success.
    Unlike the advocasy charities that are out there.
    We could club together , get 5 , and hire Max Clifford or Alistair Campbell , Might get a sight more action that way.

    The way things have been run in the UK some of us will be dead before a diagnostic test is available.
    Some more will have died before any drug trials are complete and available on the NHS .
    Then we have NICE who'll say it's not viable to treat us to prolong life so more will die.

    When is a good time to fight for your life , or the little bit that is left.

    Tom
  12. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    Actually Tom I know you are are "sort of " joking regarding hiring PR but in this day and age it might even work. It is indeed frustrating and i think the change in attitude will only come when the evidence becomes irrefutable but I hope that is soon as it has been such a long time coming for many of us.
  13. Min

    Min Senior Member

    Messages:
    1,087
    Likes:
    901
    UK
    Our best way forward in my opinion is to give whatever we can afford to Invest in ME, ME Research UK and the WPI. We have to fund our own research and doctor training, but eventually this will defeat the weasels.
  14. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    Min thats exactly what I've been doing, if we aren't up to doing much ourselves we need to support to the hilt those who are capable and will do it for us. Please take this message to heart everyone, support these organisations every $ or helps.
  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    I agree that its worth looking at all possibilities and tackling the issue on all fronts - (media included - in spite of one of my earlier posts which indicates just how disappointing their recent attitude has been - and I do mean attitude, not just performance ...!)

    However I think that without the solid biomedical advances we will gain very little in terms of progress with other approaches. People, organisations and governments need a pretty good reason to change the status quo (ie. I'm sure the UK Dept of Health changed their ME blood donation policy in the main due to the Lo/Alter positive MLV's paper indicating that this illness is potentially infectious, not just because of repeated pressure from advocates and charities).

    When writing (politely of course) to newspapers, medical magazines etc, it does help to have an undeniably powerful & replicated biomedical research breakthrough in your pocket to shift the inertia and turn the current mental and political paradigm 180 degrees!

    Until now most of my available funds have gone towards biomedical research eg. ME Research UK & Dr Kerr's CFS Research Foundation (is this still up & running?), as well as ME Association membership (they donate funds towards biomedical research and write on our behalf to MP's and Govt. health organisations etc) and my next donation will of course be WPI. I've had to pace my donations though - 14 years of illness has done nothing for my bank balance!
  16. Sasha

    Sasha Fine, thank you

    Messages:
    7,554
    Likes:
    5,577
    UK
    Totally agree, donate donate donate...

    Very well put, picture, I think it's all going to come down to getting solid findings in the biomedical research and I think we're getting very close to tipping point on this one. I think we're in for an interesting autumn!
  17. Tom

    Tom windows exterminator

    Messages:
    94
    Likes:
    0
    " Sort Of" helsbells , it would likely be closer to 5.00 per minute .

    Think on folks .

    The Government , NHS , MRC , NICE etc , they have no money , it is all our money, us, the people of this Island nation.

    They have been doing a crap job spending it these last 25 years or so , thats why charities spring up raising money for research.

    The "false illness belief" has had a long time to become entrenched and will take a long time to overcome and cost money to re-educate the medical profession , unless they are all closet believers and all suddenly come out.

    In the present economic climate with the cut , cut , cut brigade how much of our money will be directed to developing a diagnostic test , drug trials and testing , re-educating the medical profession and finally some treatment that may help some of us ,have a life.?
    Over what time scale ? 1 year , 3 years , or 5 or more years?

    It would make economic sense to take as long as possible would it not?

    We have been donating all our lives , and our donations have been misdirected .

    When fighting for your life it is better to fight sooner than later. You may have more life left.

    Tom
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,133
    Likes:
    5,003
    Well then... look here. The SMC explicitly comparing XMRV and vaccine MMR research (I missed it last time because there was no mention of XMRV):

    23 August 2010
    Expert reaction to PNAS study on virus sequences found in blood of chronic fatigue syndrome patients

    This research, published in Proceedings of the National Academy of Sciences purports to find a link between a virus and chronic fatigue syndrome, although this is not the same virus as that implicated in similar recent discoveries.

    Prof Robin Weiss, Professor of Viral Oncology, University College London, said:

    "The paper by Lo and colleagues in PNAS claims an association between a retrovirus of mice and human chronic fatigue syndrome. It is based on small numbers but it will provoke discussion. Let's hope it is not another claim like MMR and autism which didn't hold up, but I am sceptical of the claim. Different primers were used for the CFS samples and the controls in Figure 1 and the analysis does not appear to have been performed using blinded samples. Remarkably, the mouse retrovirus is not the same as the one linked to CFS in a report published last year. One should also bear in mind that no less than 4 negative reports on this topic (failing to find a retrovirus link) have been published this year from reputable scientific groups in the UK, The Netherlands and at the Center for Communicable Diseases & Prevention in Atlanta, USA."

    Prof Myra McClure, Professor of Retrovirology & Honorary Consultant in GU Medicine, Imperial College London, said:

    "The paper by Lo et al, communicated by Harvey Alter, is bound to baffle both virologists and CFS patients alike. In the first place, it is important to realise that this group have not detected the virus (XMRV) that claimed media attention after the publication of Lombardi's paper in Science last year. They describe murine leukaemia virus (MLV)-related sequences that are genetically distinct from XMRV. The second mystifying aspect of this paper is that, just as in the Science paper, these new virus sequences seem very easy to detect (after only single round PCR). Several other groups, including the CDC in Atlanta, have employed the same experimental protocol, yet have consistently failed to detect any retrovirus in CFS patients. In carrying out such studies it is always important that test samples and control samples are randomised prior to analysis and that they are tested blind. It would be reassuring to know that this was the case with this study. In view of the controversy that this paper will inevitably generate, the authors are sensibly cautious about the significance of their findings with respect to CFS."

    Detection of MLV-related virus gag gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors, by Lo et al., published in the Proceedings of the National Academy of Sciences.

    http://www.sciencemediacentre.org/pages/press_releases/10-08-23_cfs_virus_pnas.htm

    "We know what happened with MMR - the terrible consequences of parents refusing to vaccinate their children... we don't wnat that to happen again do we? We know the role the media can play in encouraging these hysterical patients, and I think it would be best if you all behaved responsibily by just reporting what Wessely says about CFS."

    This looks worse than I expected.
  19. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    Why haven't any of the so called ME/CFS doctors in the uk come out to talk about this & raise the profile in the media. Prof l Findley (neurologist) seems to take lots of opportunities to get on the radio to talk about me/cfs. There must be many other doctors some of us have seen/are seeing that these latest findings have rung alarm bells with & it all starts to make more sense to them.

    I realize these type of doctors have made a huge amount of money personally out of me/cfs, but they often specialize in other areas aswell (prof findley =parkinsons) so they are not going to be out of a job, surely after seeing so many patients struggle over the years that must have some kind of heart? Why wouldn't they want to speak about such a finding?

    I would of thought that someone of Prof Findley standing would be contacting the WPI directly to find out more & all the other so called top doctors in the UK, surely they definately need to know that they are doing the right thing with their patient.

    What if we all got together and emailed as many of these top doctors/neuros that we've seen amongst us with as much info as possible about XMRV etc over the course of a week (preferably before the conference), & let them know when the conference is ( we just don't know, many of them may not even know about it). We can add that we would expect them to make some sort of comment to the uk press about as to how important the new findings are.

    If nothing else at least they will know there are an awlful lot of patients with an awlful lot of knowlege out here, and that they are being watched.

    Would we be able to put doctors email addresses on the forum or could we get in trouble?
  20. Min

    Min Senior Member

    Messages:
    1,087
    Likes:
    901
    UK
    Drawing attention to these doctors will make them targets for the GMC, as this wonderful lady has been:

    http://www.drmyhill.co.uk/

See more popular forum discussions.

Share This Page