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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. fred

    Article: One Agent For Change: I Cannot Imagine Our Community Without... by Marly Sil

    Well, mine is not going to be a popular post but I am going to make it anyway. I find the contention that we all have to 'get along nicely' as one enormous community, regardless of very differing views on many matters, and often through gritted teeth, to be somewhat naive and unrealistic...
  2. fred

    Campaign to inform UK MPs re XMRV

    I have looked at this thread and have concerns about it: the method that is being used to lobby politicians; the poster's big claims of high level connections with those in power; the apparent assumption that there is no advocacy/activism already taking place in the UK that this new campaign may...
  3. fred

    STOP the SMILE Lightning process trial on children - Please HELP

    I have reported Kermit's post as a personal insult. Challenges to statements made on this forum are just that: challenges. Kermit may not like them or agree with them but that does not make them "argumentative rubbish". Kermit also might not like the fact that Suzy and I pursued him for...
  4. fred

    UK blood safety/XMRV on Ellee Seymour's political blog

    Thanks to Polly for finding this. Good to see at least one UK journalist is interested in the story.
  5. fred

    Article: XMRV In the Balance- A Tale of Two Conferences

    He didn't exactly duplicate his results. The second round of tests showed slightly different sub-types to the first and, to my knowledge, there has never been a published explanation of the reasons why. I spent some time recutting the public domain data from Kerr's second study and did not...
  6. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    Who has told you this? Has this been confirmed by NRES or are you basing these assumptions on your own experience of challenging medical ethics approvals or on other unrelated experience? This is not a legal process. It is a medical ethics process. I would also request that you do not...
  7. fred

    STOP the SMILE Lightning process trial on children - Please HELP

    This is already being discussed at some length in the thread below. I fail to see the relevance of starting a new thread on it, especially as it circumvents the questions being raised about this matter in the existing thread. If you are going to duplicate this post, then, for the sake of...
  8. fred

    Article: XMRV In the Balance- A Tale of Two Conferences

    I honestly believe that people are reading too much into Kerr losing his job. He was not a high profile researcher at Georges and so would have struggled to justify his position given the cuts that many have felt the brunt of, not just his department. I also don't see why not being at Georges...
  9. fred

    XMRV: a new virus in prostate cancer ? Aloia et al

    Not sure if this has been posted already. I can't find it in a search. Let me know if it already has a thread and I'll get this one deleted. Thanks. http://cancerres.aacrjournals.org/content/early/2010/10/20/0008-5472.CAN-10-2837.abstract
  10. fred

    Article: XMRV In the Balance- A Tale of Two Conferences

    Kerr didn't lose his job because he researched ME. He lost his job because of cut backs across the board. And I am not so sure that his work was high risk. The gene expression research he was doing is fairly common in other fields (for instance, in obesity and diabetes) and, indeed, Dr Esther...
  11. fred

    Article: XMRV In the Balance- A Tale of Two Conferences

    The UK appears to be pushing his agenda quite hard but the motives for it are unclear. It could be ignorance, arrogance, disingenuity or deflection. Take your pick. I read somewhere that he was McClure's mentor at one time but I have no evidence myself to support this. Dr Kerr has lost/will...
  12. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    I share Suzy's concerns about the bases on which people are challenging this trial as I do not believe that anything "reasonably considered cogent to the ethical viability of the study is all that is needed" (even if that is the 'official' line from NRES itself). I also do not believe that there...
  13. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    Kermit, there is no such thing as a National Regional Ethics Service. There are Regional Ethics Committees (RECs), one of which may have approved the trial. Then there is the National Research Ethics Service (NRES) which is the national administration which oversees the RECs. The first port of...
  14. fred

    OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE.

    I presume these are the manuals that were used in the trial. If so, how were they acquired for the public domain? Was it via a Freedom of Information request? Also, is there any way of downloading these files other than via Torrent as it is causing problems for many of us.
  15. fred

    Article: XMRV In the Balance- A Tale of Two Conferences

    Weiss is a loose cannon, imo. Here is his response to the Lo/Alter paper, issued by the UK Science Media Centre (SMC), an indepedent organisation that appears to have no controlling body. http://www.sciencemediacentre.org/pages/press_releases/10-08-23_cfs_virus_pnas.htm We all could drive...
  16. fred

    Three MPs raise questions about ME and XMRV with the UK Government

    Also on ME agenda. http://wp.me/p5foE-3bx Parliamentary Written answers and statements, 21 October 2010 David Anderson (Blaydon, Labour) David Willetts (Minister of State (Universities and Science), Business, Innovation and Skills; Havant, Conservative) Hansard source* (Citation: HC...
  17. fred

    Three MPs raise questions about ME and XMRV with the UK Government

    Also on ME agenda. http://wp.me/p5foE-3bx The Minister for Public Health, Anne Milton, has responded to related questions from two MPs about what the Department of Health plans to do with blood from people with ME that is held in storage or whether he has any plans to screen blood already...
  18. fred

    Three MPs raise questions about ME and XMRV with the UK Government

    On ME agenda. http://wp.me/p5foE-3bx Caroline Lucas, leader of Green Party and MP for Brighton Pavilion, tabled two written questions on the blood ban which is to be imposed on everyone in the UK who has ME/CFS from November 1. In the first, she asked the Secretary of State for Health...
  19. fred

    UK XMRV demo 1st November

    Advisory Committee on the Safety of Blood, Tissue and Organs: public meeting 26 Oct This might be another meeting worth attending for those in London. It is SaBTO's (Advisory Committee on the Safety of Blood, Tissue and Organs) third public meeting to be held on Tuesday 26th October at 10am...
  20. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    Crawley on BBC Radio 4 in 2007. http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml
  21. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    Oh, really? Aetiology is not going to help us at all? Looks like the WPI and the NCI and the Cleveland Clinic and the FDA and the NIH are all on the wrong track. Shucks. I think that one is going to need a little more work, Esther dear.
  22. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    7,000 out of 250,000 estimated ME patients equates to just 2.8%. That's not a great hit rate. And how much does it cost to see less than 5% of all UK sufferers each year? Wouldn't this money be better spent on biomedical research that may lead to efficacious pharmaceutical interventions that can...
  23. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    If you extrapolate 4.7% to the total population, you get over 3 million people. Methinks that either her maths or her diagnostic criteria (or both) are screwed.
  24. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    Please don't say that the UK Medical Research Council is actually going to give this woman 2.5 million for a genome wide association study on ME. It's official. ME will be cured by getting patients to spit in a pot. Simples.
  25. fred

    Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

    Thanks for this, Suzy. A quick scan found this interesting quote. I am not sure which disease she is studying but I am sure that it is not ME.
  26. fred

    New research on XMRV in lab mice

    Common inbred strains of the laboratory mouse that are susceptible to infection by mouse xenotropic gammaretroviruses and the human derived XMRV J. Virol. doi:10.1128/JVI.01863-10 Copyright (c) 2010, American Society for Microbiology and/or the Listed Authors/Institutions. All Rights...
  27. fred

    Heidi Bauer's blog: 'It's the virus, Stupid'

    http://cfschronicles.blogspot.com/2010/09/its-virus-stupid.html Here's the first para.
  28. fred

    Whose XMRV serology assay is McClure using?

    Posted on Co-Cure. http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009d&L=co-cure&T=0&F&S&P=4248
  29. fred

    Lightning Process to be Evaluated in Research Study on Children

    From the XMRV Press Releases page on Facebook. A template letter for challenging the trial protocol document and also email addresses to use, viz: Bath Min Hospital (where Dr Esther Crawley works) Press Officer emma.mooney@rnhrd.nhs.uk FAO Peter Franklyn, Chairman of Bath Min Hospital...
  30. fred

    UK Science Media Centre, RCP, and press silence on XMRV

    Interestingly, Lo et al cite the Voisset paper and then go on to explain how they ensured that they were not working with a 'rumour virus'. Here's the opening para to the Lo et al section on this.