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The UK BBC report *Half the story!*

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Sep 7, 2010.

  1. OverTheHills

    OverTheHills

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    Whats different about the scottish study?

    To me a very interesting question is how did this get through the media blackout? Possible factors:
    - Its BRITISH research not american
    - Its simple and unambiguous - no need for journalists to go to the Science Media Centre for rent-a-denial
    - Its kids?

    Does this suggest the way forward - do we need to get BRITISH replications of 'overseas' research to get British publicity? Even though it doesn't move the science forward it wins the media war?

    OTH

    PS Mark are you nocturnal?:D
  2. Marco

    Marco Old blackguard

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    The significance of the adolescents findings is that it provides hard evidence for an immune response to a virus without needing to identify the exact virus - which is where other studies have fallen down when the results couldn't be replicated.

    While us cognoscenti were already aware of similar findings and have moved on to finding the virus, confirmation of the organic nature of the illness is big news to the UK general public fed a diet of scepticism and psychobabble for the last two decades.

    I'm surprised (not really actually) that the media reports failed to pick up on one of the key findings in the paper - that the kids studied were already showing signs of future cardiovascular disease/cardiomyopathy and that the NICE recommended treatment involves graded exercise!

    The good news on the other hand is that the study was widely reported and the public are now primed to accept further evidence of a viral cause.
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi folks, I expect you've already seen it by now, but if you go to the 'Latest Research' thread and 'UK Paediatric Study' you'll find lots more info on this.
    This was not about XMRV research, but entirely different UK research (ME Research UK in Scotland).

    I find the coverage really odd too for exactly the reasons you have mentioned above:

    Firstly, the timing of the news to coincide with the massive, yet unmentioned, XMRV Conference happening in the US, seemed odd.
    Also the report was entirely positive (no ifs and buts like usual) and just the kind of coverage we always wanted - that in itself is odd.
    But also, this type of study has already been done in adults by ME Research UK (type in 'neutrophil apoptosis' into the Research page on the MERUK website and several research papers come up there) - yet there was no great hue and cry in the British press and announcement of research breakthroughs back then. Just more CBT and GET.

    Also, as Joanne60 pointed out, the research indicates a chronic infection, but how can they tell its a virus specifically and not Lyme, for eg.

    So why now and not before, why in this way, why no negative psychological interpretation and why no mention of XMRV? Why are the press all over this story all of a sudden.
  4. VillageLife

    VillageLife Senior Member

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    and why still no mention of the Alter paper!
  5. Athene

    Athene Never give up

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    Good points Mark, and very depressingly true.
    This is so frustrating and infuriating.

    We need someone like Mindy in the UK to start making a big noise. What about Esther Rantzen or Clare Francis? Are they too ill to get in touch with someone from the media? They both have all the contacts. Does anyone know how to get in touch with them?
  6. ukxmrv

    ukxmrv Senior Member

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    Tried both of them, Athene. I wrote to the organisations they front. No luck.

    Esther Rantzen is more interested in pushing the Lighning Process etc as a cure. Clare Francis just doesn't answer.
  7. ukxmrv

    ukxmrv Senior Member

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    There's a patient demo being organised for Monday in London outside the Science Media Centre. (this is from the WPI Facebook page posted by Victor Smith)

    Monday 13th September 11am SMC - Albemarle St London, W1

    The Science Media Centre purports to be the place where science meets the headlines.People with ME/CFS know the SMC is the place where science disappears from the headlines. The stunning work of Lombardi and Mikovits has now been confirmed by Lo and Alter. These are exciting times for people with ME. The times they are a changin.

    When it comes to reporting retroviral research on this illness in an independant and impartial manner the Science Media Centre is no longer fit for purpose. The wonderful work of these successful scientists deserves our full support. Their work must not be silenced. The motto of the Suffragettes was "deeds not words." The time for action is now.

    Let this demonstration be as elegant and novel as the science it supports. To symbolise the Science Media Centres attempt to banish all news of these discovories from the headlines this will be the first demo ever where all the placards and banners carry no words. Let's all turn up with a completely blank canvas. By holding up our blank canvases in unision we can draw attention to the shameful news blackout surrounding this groundbreaking research while at the same time the blank canvas will acknowledge the very best efforts of those scientists less able to find this virus.

    Practical Stuff- The closest tube station is Green Park (5 mins walk) Green Park is on the Jubilee, Victoria and Picadilly lines. There are a number of buses along Picadilly which run along the entrance to Albemarle Street- Nos 8,9,14,19,22 and 38.

    Drinks and biscuits provided. See you there.
  8. Mark

    Mark Acting CEO

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    The night shift

    :D

    Not exactly...

    Since I'm sure there are plenty of people out there wondering about that question, I'll say a little about it...

    I've always been very much an "owl" rather than a "lark". But over the years since I fell ill, and especially recently, I have indeed been taking that to a whole new level...

    When I fell ill, probably my biggest problem was the reactivity (itching) I got when I tried to sleep. It still is really but I have it under a degree of control now. There are two main factors: firstly I was sweating a lot during the night and whatever I touched in terms of bedding seemed to "go bad" and then make me itch. Secondly I was itching at a low level all day anyway but when trying to sleep, one stays very still and relaxes of course, and the interruption to relaxation from these tingling, heat, itching and stabbing pain sensations becomes more noticeable and disruptive, preventing me from sleeping.

    For the first few years, while I was still working regular hours, I didn't even realise any of this. My body was constantly "numbed" and I was so permanently shattered and exhausted that when my head hit the pillow, I fell asleep immediately anyway despite the itching - but slept for 10-14 hours every night and woke up feeling absolutely shattered. When I gradually begain to get some of these issues under control, and when I started to have a few good days, it became more noticeable that I simply couldn't sleep until I was utterly exhausted.

    For years, I would lie in bed for hours, and hours, and hours, night after night, trying to sleep - changing bedding, moving to different positions, trying anything to stop the itching; it's painful now to even recall because it really was a living hell. I went through several beds and scores of sets of bedding of all kinds, and some were helpful, for a time, but nothing lasted for more than a day or two.

    My body clock and daily routine became so disrupted that the main solution I developed for coping was simply to not even try to sleep at night. I was losing so many hours of life that I was really struggling with the basics of life, like cleaning and feeding myself. So rather than spend hours trying to fall asleep when I just couldn't, even though I was very tired I would stay awake for 24-48 hours at a stretch, doing something at least, until I was so utterly exhausted that I could fall asleep despite the itching. In this way I tended to try to reset my waking hours: if I wasn't asleep by, say, 3am, after going to bed around midnight, I would give it up and get up and do stuff, and try to stay awake the next day so that the next night I would be able to sleep about 10pm and get back into a 'normal' routine.

    Fast forwarding a few years now, to a point where I have more control over all the itching, I nevertheless have frequent inexplicable relapses, and maybe one night in 10 it all happens again and once it does, my whole life is thrown into chaos again. The practicalities of my life now are that I have a very understanding employer and boss, who allow me to work almost entirely from home (which is possible because my work is very techy, in software development), and in practice I work whatever hours I happen to be awake.

    So nowadays my life is rather like the aboriginal sleep pattern I once read about: in research into what constitutes "natural" and "healthy" sleep patterns, there is one view (rarely expressed) that an aboriginal pattern based on 4 to 6-hour "shifts" guarding the camp has a reasonable claim to be natural. That is how my life tends to work anyway, without the "shiftwork": when I am tired, I sleep, when I am awake, I work. I sleep on the sofa, in the one room that's both my office, living room, kitchen and bedroom, and when I wake up, I move the mouse to wake up the computers and get back to work; when I'm tired, I sleep.

    Over the years, with great effort, the practicalities of my life are now pretty efficient. Since another adaptation I've made over the years is to rarely leave my "oasis" or "safe haven" because of all the chemical sensitivities and other problems for me in the outside world, it's actually now possible for me to be very productive. Literally almost every waking hour is spent here working on the computers, and the only real break is to get some food. I do now go out once or twice a week for a few hours, but basically, here on my own on Sofa is my whole life. I barely have to move 10 paces to do anything I need to do.

    And then along came Phoenix Rising...and when I started writing, I found I had an outlet at last where I could talk about some of the emotional and practical problems I faced, and rather than a wall of scepticism and disbelief, people actually said "yeah, me too" about all kinds of things. And in particular, the different time zones around the world and my strong desire to communicate with certain individuals from the US in particular, has ended up meaning that even though I don't really have such a bad problem with my hours as I used to, I am at the moment losng contact again with "normal" working hours and tending to work and chat through the night a lot. Basically because, after my whole experience of the last 15 years, I can - I'm used to living this way, and I'm really enjoying it.

    I know, I know, sleep regulation is critical and bad sleep patterns can be fundamental and have major health impacts. You don't need to tell me! The point, though, is that I don't have a choice in the matter! At a certain point there comes a time when you can deal with a situation better by "bending like a straw in the wind" and going with the flow of what's happening. In the absence of any ideas to solve the underlying problems (although I have made some degree of progress over the years with some help) the only real solution I've had has been to adapt my life around the realities.

    Finally having taken this opportunity to go into all this (in a terribly off-topic fashion, sorry!), I should quickly say how all this relates to ME/CFS. I've said once or twice that severe sleep deprivation over a prolonged time can be enough on its own to get a person close to the borderline of Fukuda criteria CFS, and I've often had an angry reaction to that assertion. But I stand by it because I know from my own experience that it's true. I have had memory impairment so severe that I couldn't remember my own phone number after having the same number for 10 years, complete imability to concentrate; I've had physical exhaustion so bad that I fell over in the street; swaying when closing my eyes (forget the name of that test); orthostatic intolerance; muscle pain and weakness, stabbing pains and rheumatoid-like pains, all of them being worse when I become sleep-deprived for a few weeks; and of course I have the underlying immune weaknesses that create the whole inability to get refreshing sleep in the first place.

    I therefore suspect there are a lot of people who are at the very least labelled CFS who have similar or identical underlying phenomena causing them, and I expect that most of them never get past the stage of finding a safe haven - they just get into bed, fall asleep, sleep for 12 hours and feel trashed afterwards - just as I did for years and years before I began to unpick the pattern - and it took me a couple of years of detox etc before I could even perceive these effects.

    So finally, while I call my illness "WTF" and would not tend to identify myself as ME (which I tend to think ought to be reserved for CCC), nor even necessarily as CFS (MCS is my only "diagnosis"), I could at the very least easily get diagnosed this way, and so whatever I do have, there will be people in an environment like this forum with the same problem. And there are: I have met several members whose symptoms seem exactly like my own. It's also very noticeable to me that all the people I've met who make claims of "recovery" have basically got there the same ways as me, and all of us would agree I think that we haven't really "recovered", we have just retreated to safe havens and oases and radically transformed our lifestyles to a point where it's almost possible to forget that we are sick, and live a bizarre life inside a bubble of weird coping strategies. I don't know, but most of us seem to be single - I would guess that might be a fundamental requirement for all this to even be possible...

    So to sum up: not exactly nocturnal, my sleep patterns are pretty close to random really, but I am certainly very often up all night! :Retro smile:

    Phew, that was a long one....fancy a bit of a nap now...:Retro smile:
  9. Mark

    Mark Acting CEO

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    COOL!

    Dammit but for all kinds of reasons this is awful timing and it's going to be really, really hard for me to get to. But I'm already starting to think about how on earth I can make it....hope I can somehow find a way....
  10. taniaaust1

    taniaaust1 Senior Member

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    best luck to you guys/girls in England who are going to support this.

    i really wish i was in England too do this!!

    Gather and Be noticed :)
  11. alex3619

    alex3619 Senior Member

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    Hi Mark, on sleep patterns and itching preventing sleep, we are very similar. I would like to add that I find that sleeping when I need to and not when I am expected to leaves me feeling much more functional: to h*** with the 9 to 5 world, I prefer being more functional.

    Bye
    Alex
  12. Athene

    Athene Never give up

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    I agree, Mark and Alex. I used to spend all day trying to wake up and all night trying to get to sleep. If you function better at night, take advantage!

    UKXMRV, that's such a bummer about Rantzen and Francis. But great to hear about the protest in London. I WISH I could be there. I'm in Sicily and off to Germany the next day for my latest onslaught of therapy.

    I hope at least some of us can make it, and give a real (not journalist) account of what happens.
  13. bullybeef

    bullybeef Senior Member

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    I dream for that, Alex....bl**dy kids!!!

    BB
  14. alex3619

    alex3619 Senior Member

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    Hi bullybeef, I cant help with that I'm afraid. :Retro wink: Bye, Alex

  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Maybe we will need another thread as really want to back up what Mark & Alex said!

    Hi Mark (and Alex) good to hear your story.

    Don't tend to write about symptoms but want to echo what you said. I too have the massive difficulty getting to sleep & staying asleep due to itching - legs heat up v hot - heat and contact from bedclothes sets it off - so maybe more viral/nervous system related = overstimulation. Its a far worse symptom to manage than the fatigue - couldn't go out last Summer v often as legs scratched to bits and heat set off the sensitivity. Nothing worked except antihistamines.

    (btw the ME Association in the UK tell us that itching is not considered an ME symptom - ????? and check liver. Many have normal liver results and many still itch with ME!). Also develped asthma all of a sudden.

    I use Benadryl (Acrivastine) every night or can't sleep (non drowsy for rest of world, knocks me out beautifully and stops itching) - so maybe in a few years liver probably will need testing!

    Difficulty sleeping normal hours due to itching esp 10pm-3am without meds, even if I avoid overstimulation from computer screen, TV, other people. After this, sleep beautifully 5am til 11am (with drugs)! Also have bizarrely structured day - rubbish til 1pm, even for telephone conversation, but most productive from 2pm til 10pm. Don't usually leave house until 4pm comfortably if need to shop (and have to take car as can't walk far). I too am beginning to find this 'normal' for me - have tried to 'retrain' myself, but just increases symptoms, now accepting it - I'm getting going as everyone else's kids just coming home from school!

    Are we a quirky sub group or is everyone like this?

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