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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. L

    A New Term! - "Bodily Distress Syndrome"

    I attended one of these "Clinics" several years ago. They were limited to 10 sessions with around 15 attending each session. The way the sessions were organised I probably saw around 80 individuals in total. Things that don't tie up with Peter Whites report: - I met several people with FM...
  2. L

    Illness as Deviance, Work as Glittering Salvation and the Psyching-up etc

    If that goes back to my comment regarding currer's "Arbeit macht frei" remark, and myself labelling the Tory party with it as there current party slogan, then I stand by it. In the Guardian article I was referring to was this: A Department for Work and Pensions spokesman said working could...
  3. L

    Population statistics for chronic diseases.

    I remeber reading somewhere that in the UK they only bother recording 'notifiable' diseases - which I believe they take to be infectious. There don't seem to be many from the following list. You would think that with modern computer recording of GP records it would be a very straight forward...
  4. L

    Illness as Deviance, Work as Glittering Salvation and the Psyching-up etc

    I wrote this same thing in the comments section on a Guardian article along the same theme. I referred to it as the Tory parties new slogan, and accused them as no better than Nazi's. My comment got marked up highly before being removed due to a complaint. Luckily, someone had quoted me and...
  5. L

    Chronic fatigue syndrome 'affects one in 100 pupils'

    Yuppie Flu again !!! I have just been reading these articles with interest when my brother phoned me to tell me he had heard a report on the radio on his way into work this morning. I imagine this must have been on the BBC's R4 Today programme as my brother told me that John Humphrys...
  6. L

    Norwegian Study makes UK news at last - BBC

    Sasha - I like the comments you left. I've registered and added a comment: I'm Alfie - well not really Alfie, but then I'm not really Laurie :winking: It's a shame I have to remain so anonymous, especially on the web, just to protect my insurance payments :Retro frown:
  7. L

    Norwegian Study makes UK news at last - BBC

    I think the sidebars are just a cut 'n' paste job - lazy journalism I'm afraid.
  8. L

    Norwegian Study makes UK news at last - BBC

    Thanks Sasha - link added. I've not read it fully yet but the title header is much better than the BBC's: Cancer drug 'key to treating chronic fatigue' as experts say syndrome may be caused by defective immune system 'Most encouraging drug result so far in the history of the disease,' says...
  9. L

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    The study has hit the mainstream news at last. I have created a new thread so as not to take this one off topic: http://forums.phoenixrising.me/showthread.php?14360-Norwegian-Study-makes-UK-news-at-last-BBC
  10. L

    Norwegian Study makes UK news at last - BBC

    The Norwegian study has at last hit the mainstream in the UK: http://www.bbc.co.uk/news/health-15401746 I guess the rest of the press will now follow! ------------------------------ Added news items: Daily Mail...
  11. L

    Norway's Directorate of Health Apologises for Treatment of ME Patients

    The statement from the Norwegian Directorate of Health: At least the Norwegian government has shown it has the guts to own up. heapsreal - I wouldn't hold your breath about Wessely, or the British Government come to that, but I will definitely be asking for an apology from my GP when I...
  12. L

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Tania - It wouldn't surprise me either, and he would get instant wall to wall news coverage, which unlike this ground-breaking discovery has not been seen outside Norway as far as I can see. :Retro frown:
  13. L

    Rituximab, a Possible XMRV Treatment?

    The Published Paper The full published paper is now available: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
  14. L

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    The Published Paper Unless I've missed it, the full paper is available here: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358 :thumbs up:
  15. L

    Square One: WPI closed down; XRx blog, 10/2/11

    http://twitter.com/#!/WPInstitute
  16. L

    Reports from the "Invest in ME" conference--May 20th

    DVD set due out next week According to the IiME facebook group https://www.facebook.com/groups/5804522506/ the DVD set will be released next week (1st week of October I guess). Iime comment: This implies, and the Iime have also confirmed on the facebook group, that the Norwegian study...
  17. L

    Front Page BBC article about CFS?? (ME)

    The BBC is carrying an article about ME on the front page of it's news website today (24th Sept). Chronic Fatigue Syndrome: 'Surrounded by uncertainty' http://www.bbc.co.uk/news/health-14883651 A lot of the usual British perspective, with no mention at all of the research that's been...
  18. L

    UPDATE: BLOOD WORKING GROUP

    The BBC have been very quick to report on this: http://www.bbc.co.uk/news/health-15017660 I think they must have prepared this earlier :Retro rolleyes:
  19. L

    UK-Impact of CFS/ME

    I don't quite follow this: Is this study actually to make it look like we (the sufferers) only costs the UK economy 102 Million a year and therefore less relevant - because in 2006 a study (again by Action for ME) said we cost the economy 6.4 Billion a year...
  20. L

    Could this be an early XMRV? The JHK virus

    Bob, RedRuth - This article by the IMEA seems to suggest JHK is a variant of XMRV: http://www.imeassoc.com/The_JHK_virus.html. I think I remember reading somewhere (probably on these forums) that the blood samples used were taken from before those used for XMRV research - though I could be...
  21. L

    Could this be an early XMRV? The JHK virus

    Currer, thanks for posting. I'm not at all clued up on Cell Lines - are they man-made or naturally occurring? What I am reading from this is that the JHK retrovirus and EBV virus are constantly being produced by this cell line as your second link from 1997 shows. As it now looks like JHK...
  22. L

    Famous Athlete with possible CFS/ME

    You will find a few in the following list: http://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome Yachtswoman Clare Francis is one of the best known to us in the UK.
  23. L

    Dr Charles Shepherd give BBC Radio Interview

    'Torrent of abuse' hindering ME research This has now been reported on the BBC's website: http://www.bbc.co.uk/news/science-environment-14326514 I just can't bear to read it. No doubt our 'wonderful' press will pick up on this and repeat this rubbish - I am guessing the disabled hating Daily...
  24. L

    Discussion of the NEW International Consensus Criteria

    Terry Mitchell, MA, MD, FRCPath; Honorary Consultant for NHS at Peterborough/Cambridge, Lowestoft, Suffolk, United Kingdom. Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH; Independent, Durham, United Kingdom
  25. L

    Reports from the "Invest in ME" conference--May 20th

    DVD set available soon For those interested in the IIME DVD set of the 2011 conference, it will hopefully be available later this month (July). http://www.investinme.org/IiME%20Conference%202011/IIME%202011%20DVD%20Production%20Status.htm
  26. L

    New GP Guidelines for Chronic Fatigue Syndrome

    I apologise if this has already been posted elsewhere but I found it amazing that we in the UK are being forced further back in time by our GPs. http://www.meassociation.org.uk/?p=6959 It could explain why when I saw my GP last week, he, for the first time in the 6 years I have suffered...
  27. L

    Kay Gilderdale's story in today's Daily Mail in the UK

    Until 2005 the TB jab (BCG) was basically compulsory for children in the UK. I remember a nurse visited my school back in the early 70s and everyone in my school year was led into room and inoculated - no options were given to opt out! It was then dropped because it was seen as ineffective...
  28. L

    WPI Respond to Nature article

    So you are telling us not to discuss on a discussion forum things that you do not wish to hear - interesting to say the least. If the WPI didn't want this to be brought into the spotlight again then surely they should not have put out a response. JPV: Some interesting quotes from the...
  29. L

    WPI Respond to Nature article

    The WPI have responded to the nature article: http://www.wpinstitute.org/news/docs/NatureResponse.pdf
  30. L

    XMRV & Blood Supply Webinar Tuesday, Mar 29

    I have been mulling over the following part of Judy Mikovits's abstract for this up coming event since reading it a week ago (unfortunately I have been too ill to put fingers to keyboard up until now): Do I remember correctly (or maybe it was just a suggestion), that Judy Mikovits was going...