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CFS etc over on Bad Science

Discussion in 'Action Alerts and Advocacy' started by Angela Kennedy, Apr 23, 2010.

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  1. Knackered

    Knackered Guest

    I don't like how they addressed you Maarten, you have my support.
  2. mjrobbins

    mjrobbins Guest

    Wow, quite a vigorous response. To those who have given useful information, many thanks, and I'll have a proper look in the next couple of days when I'm a bit less busy with writing, but in the meantime a few points to clarify.

    1. I'm not fishing for an article, just generally curious. I'm a curious person, I like to explore a range of topics, eventually some of them might become articles, but in the meantime I keep an open mind.

    2. A couple of you I think are really getting a bit carried away, and I mean that with the greatest possible respect. For example, Knackered, you cited my Twitter feed. All I did was ask someone to send me a copy of one of Wessely's papers - I don't understand why you think that somehow tells you what I think about your condition? Also, the fact that myself, Crippen and Goldacre all write for the Guardian doesn't mean we have the same views or are part of some cabal - we're all freelance for a start, and The Guardian has many differing views on topics.

    3. Regarding Proctor, as it stands I think the official story carries more weight, but I'm happy to be shown evidence otherwise. I think it might be helpful for some of you to see this from a journalist's point of view. Witness testimony is unreliable, period. The testimony of victims especially so, and the testimony of child victims notoriously so. I don't regard Ean's own testimony as particularly reliable because he was a young child who was - whichever version of events you believe - a victim of child abuse (either by his parents or by carers). That's absolutely not to call him a liar, but the mind plays many tricks in these cases. Elements of the testimony on video also don't particularly match how they've been presented on some websites.. for example, Ean's description of the swimming pool incident sounds very dramatic, but when you listen to it isn't clearly a description of any abuse.

    Leaving that aside, we have two versions of events. The official version can be backed up by considerable testimony from I believe at least three different hospitals, half a dozen different institutions, and several experts. It's possible testimony there might be wrong, but as the number of independent sources rises, the probability decreases dramatically. For the official story to be wrong, it seems to be that many people would have to be involved in quite a far-reaching conspiracy.

    On the other hand, the version of events you support here seems less well-backed up, and doesn't explain a lot of things - for example, his previous hospitalizations. There's also the problem that even if I were to accept everything you've said as true, it still doesn't lead to Wessely being culpable for things like the swimming pool incident - those would have been down to Proctor's carers.

    So on the balance of evidence, at the moment I have to swing towards to official story, but I'm not close-minded to new evidence if any exists - it'd be a big story after all. I also have to say that when I read Wessely's writing, he comes across as sympathetic, if at times blunt, but then he's generally writing for a scientific audience, not for patients or lay-people, and I'm used to that sort of language and writing style. I can see how some of what he says out of the context of a scientific paper might be seen as unsympathetic, or patronizing.

    4. My views on CFS/MRE - genuinely undecided, as you'll have seen if you look through the BS forum. There seem to be problems isolating a coherent set of symptoms to agree on. I suspect that as with virtually all illnesses there is some psychological component, but to what extent who knows. There does seem to be a very strong opposition to psychology here, which I'm curious to understand more - it almost seems to me at times that some of you object to a psychological cause because you feel that people are saying it's not 'real' in some way?

    What would be interesting would be to canvas some of your views... what do you think should be happening with research in this area, where do you think the current problems are institutionally (government, academia, NGOs?), what do you think is the most promising research at the moment, and so on.

    So anyway, hopefully that gives you all some food for thought. One piece of advice - some of the bad science regulars haven't been that polite, which is a shame. Most of you have welcomed me here, even if I may not always agree with you - and for that thanks. But a couple of people here seem quite unpleasant/hostile, like the guy misrepresenting my Twitter feed - I don't think there's any need for that, and I'm just going to skip over stuff like that in future as I don't think it's helpful for discussion.
  3. Knackered

    Knackered Guest

    Are you trying to win favours at a disabled persons expense? We are disabled MJ.

    You seem to be whistling different tune than you were previously.
  4. flex

    flex *****

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    Mjrobbins

    You say "I am not fishing for an article" yet please go back and digest my previous post. It is a constant sense of amazement to the ME community that the political issues surrounding ME have not been picked up by the media. It seems to many of us that the new form of journalism is to wait for a sound bite from the new labour spin machine then just reprint what they said. Whatever happened to journalists not taking things at face value? Why do all "investigative” journalists only bother with stories about Mrs Smith being charged 200 too much to mend her boiler?

    Is this really cutting edge journalism?

    ME having its name changed to CFS by the government and insurance companies is a lie. Hiding Info from the public until 2071 is Orwellien. The whole issue is coming your way on a production line of new health policy called denial. It is creeping into every area of medicine and is policy based not scientifically based.

    I sincerely hope that neither you, your child or family member is ever faced with a physical illness that has physical tests denied and stifled as medieval psychological rhetoric is employed on a policy basis with disastrous consequences. This has been proven to be the case time and time again throughout history with MS Parkinson's Disease, Epilepsy and even HIV being such classic examples.

    Exactly when did ME disappear as a neuro immune disease listed by every health authority in the world and morph into "CFS" an illness qualified by being a bit tired. The answer is that it didn't and is recognised as such by not only the WHO but also this current Government as stated in televised debate last month in the houses of parliament. But the myths continue. Why are people with ME lying chronically ill in their beds unable to coordinate their legs move their eyes effectively etc etc when those described as having "chronic fatigue" are in many cases able to carry on their lives effectively. This is to do with failed policy and corruption.


    These are clearly two separate patient groups with the latter being presented to the public as “ME/CFS”, and ME patients not being represented at all.

    At this present time there are real scientific studies taking place all over the world to further understand the retrovirus XMRV and its connection to ME the neuro immune disease. Concurrently the psychiatric lobby is cowering behind their flawed studies of “tired” people which they have continuously regurgitated claiming to be separate studies over the last two decades to popularise their invention “CFS” . The reason they are cowering is because for the umpteenth time in history they are about to show psychiatry as a subjective corrupt nonsense on sale to the highest bidder in the form of the government or any insurance company that needs a get out clause.

    Unfortunately for them its not going to work this time because of the internet age and the fact that the truth is out. There is simply to much poo to get back in the horse.

    You have also referred to Wessely being sympathetic towards "CFS" sufferers whilst presenting this to a "scientific" audience. Psychiatry is a belief system not a science. Its like saying that a religious leader believes an illness to be caused by the patient being evil and then presenting this as science. Furthermore it is his flawed and deliberately misleading unscientific rhetoric that stops people who are chronically ill getting access to insurance payouts and disability payments. I for one do not consider this sympathy. It is merely insurance denial in disguise.

    Saying that there is a wide distribution of symptoms in "CFS" negates it from being a physical disease is ill informed as the same is true of many cancers and indeed MS. However if you would care to read the most accurate definitions of ME you will find there are core symptoms required to make the diagnosis of ME the neuro immune disease coded by the WHO. Equally professor Wessely has a definition of "CFS" which he wrote with his colleges which specifically excludes the main symptoms of ME and includes vague symptoms such as "fatigue". These are the subset of patients that you are inadvertently referring to without realising and they possibly do have a "psychological" component to their illness. Of the two groups aforementioned from which would you rather receive a blood donation?

    Take yourself back to the understanding of MS and you will find exactly the same argument playing out and we all of course know what the outcome was. The Eon Proctor "official" story is small fry in terms of considering a cover up when you take into account the story I have provided above which took Professor Malcolm Hooper 426 pages of complaint to tell in full in "Magical Medicine, how to make a disease disappear".

    Lastly, it is often mistaken that an individual having a psychology is the same as an illness having a psychological component. All human beings express a range of normal human emotions ranging from grief to uncertainty from anxiousness to emotive sentiment. If this is taken as proof by psychiatrists of "mental illness" then please watch out the people on the bad science site who have exhibited the usual normal range of emotion and sentiment as have some of the respondents from this site. The men in white coats will especially be after those who are not showing signs and symptoms of physical disease along with proof of a retrovirus form a blood test. I would imagine all of the ME members of this site would not fall into that category.

    So, Mr Robbins if you did come in here fishing for a story you just may have struck gold.

    How are you going to tell the story?



    To be continued ……..
  5. Robyn

    Robyn *****

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    mjrobbins regarding: I had a girlfriend with CFS and I certainly understand the frustration.

    Just a thought but if you had any close contact with this CFS girlfriend. You may want to consider getting yourself tested for XMRV when the test becomes available. It's potentially contagious and being found in prostate cancer patients as well. See this for reference http://winshipcancer.emory.edu/WinshipContentPage.aspx?nd=758&news=194
    Just to be on the safe side.

    Oh and if you or your group would like to check out more on human suffering please feel free to check out other sites as well. You could try the MS, Parkinson's, Autism, Cancer (numerous types), and Aids forums for starters.
  6. Angela Kennedy

    Angela Kennedy *****

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    Hi Min,

    I just want to make it clear that I started the thread because a big advocacy issue (the Bad Science forum baiting in the wake of 'Jonas' anonymous complaint to the GMC regarding Sarah Myhill) had reared up, and I felt people needed to be aware that this was going on.

    I certainly did not expect BS forumites to come over here.

    Rather uncomfortable at all the patronising 'advice' from ignorance they're giving us. The phrase 'Know-it -all- Nellies' springs to mind - especially as they SO don't know about ME/CFS by their own admission. They really think we need educating on these issues?!!

    And of course - people from here being personally attacked over there is reprehensible.

    Still - not the first time b****x has been written about the community and its supporters.
  7. Gerwyn

    Gerwyn Guest

    we support the evidence.There is no scientific evidence regarding psychological causation.psychiatrists keep quoting correlation levels with r values of around .4 .A r level less than .5 is not usually of publishable standard.Correlation is not causation.Wesselly is writing for psychiatrists and the lay press neither of which have any training in statistics .psychiatrists have bo scientific training.Simon Wesselly has made many public derogatory comments about people with ME.This is very stange way of expressing care!There are 80,000 papers demonstrating biomedical causation and none demonstrating psychological causation.As you ate so keen on the official position that position is that ME is a neurological illness.I am a psychologist and psychological problems occur in virtually all chronic debilitating illnesses as a RESULT of the symptoms they are not the cause. witness testimony is unrealiable whether it be official or unofficial.The additional problem is that the reciever of that testimony adds a further layer of intrpretation in line with the recieverscognitive biases and belief systems.This is why Wesselly,s views are in fact testimony and not fact.He has interpreted the reports of patients so that the meaning is in line with his view of the world.interpretations being unfalsifiable are not scientific.Unfortunately he treats his subjective views as fact and that is where the science stops.

    i am genuinely suprised that ,as an experienced journalist,you accept official explanations of events so readily.This is especially strange given that you have plied your trade under a government that has turned misrepresentation of fact into an art form. it is worth noting that Simon Wesselly is an agent of the government and regularily recieves funding from the Linsbury trust which is a vehicle for an earstwhile government minister namely Lord Sainsbury.I note that this is never mentioned in the Guardian
    The idea that ME/cfs is caused by psychological factors has not been accepted by NICE,The department of Health,the WHO and the CDC of America..i also note that you have been silent on that issue.i find that curious that you haven,t reported that fact given that you accept other official pronouncements so readily.

    Finally .i have a little challenge for you.Rather than canvass our subjective opinions why doesnt the guardian hire an independent statistician to revue the papers alleging psychological causation and publish their findings in full.Now that would give an objective answer to your question frr from bias of any kind
  8. natasa778

    natasa778 Senior Member

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    There is nothing to be undecided about.

    If you are intelligent, educated, and genuinely well-intentioned, that is.

    It is not like trying to decide between two different shades of brown for your shirt. It is hard science versus psychobable. Those are your choices.
  9. Min

    Min Senior Member

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    closing the thread is a good idea Maarten, here's another recent gem from the BSers:

    "Lulz I am trolling the f*** out of those stupid fU***** on the phoenix rising forums!
    They are so easy to bait!! Hahahaha true morons!!!"
  10. pollycbr125

    pollycbr125 Senior Member

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    i think more polite is the biggest understatement ive heard in a long time .As for Adam being infantile he is obviously taking a leaf out of bad science members book .Though if you had such a debilatating illness such as ME i think you would find its called having a sense of humour , something which is vital when dealing with an illness like this .There is a big difference in saying something in a joking manner to being downright rude and insultive .

    if as you are all claiming you have come on here to educate yourselves about this illness then may i suggest you refrain from posting and actually take the time to read through the many posts on this forum about the illness, ie symptoms and the posts regarding biomedical research. though as they say ignorance is bliss and obviously some folk are more ignorant than others .
  11. Adam

    Adam *****

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    Troll Guide

    TROLLS - A GUIDE TO MANAGING PARASITIC INFESTATIONS ON FORUMS

    1) Under no circumstances feed a troll.
    2) Remain inside FORUM (all previous attempts to seek out trolls lair and expunge them from hidey hole have proved futile)
    3) See 1 above.
    4) Talk amongst YOURS(ELVES)* in the presence of a troll, but never address them directly.
    5) Trolls can be baited and trapped. However, several peer reviewed studies suggest this is also futile. Apparently, trolls have no regard for science, good or bad, and utilise some kind of ancient magic (known as psycho-babbling) to free themselves from said traps.
    6) In the event of a sudden infestation remain calm at all times. Trolls appear to thrive upon hosts excitable behaviour.
    7) See above (1)
    8) Trolls get bored easily. A rule of thumb adhered to by Trollogists is follow steps 1 to 7 to arrive at 8). Witness trolls slope away.
    9) When troll(s) return repeat steps 1 to 7.

    * Trolls are allergic to Elves

    infest [in fst](3rd person present singular infests, present participle infesting, past infested, past participle infested)
    vt
    1. take over place: to overrun a place in large numbers and become threatening, harmful, or unpleasant
    2. live as a parasite on: to live as a parasite on or in something

    [Mid-16th century. Directly or via French infester from Latin infestare to attack, from infestus hostile.]

    -infestation [n fe styshn], n
    -infested [in fstid], adj
    -infester, n
  12. joyscobby

    joyscobby Senior Member

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    [video=youtube;FMEe7JqBgvg]http://www.youtube.com/watch?v=FMEe7JqBgvg[/video]
  13. marysimmons

    marysimmons

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    Just wanted to say that I've been lurking at the badscience forums for the past few days - I started with the Dr Myhill thread and then the two offshoot threads they set up regarding Simon Wessely and CFS/ME - What Treatments Are There. I am not easily shocked, I can tell you, but what I saw over there was staggering. Definitely, do not engage with any of their people who have come over here being all nicey-nicey and claiming that they're genuinely interested. It is hypocrisy. I've seen these same people and their pals engage in the most jaw-droppingly insulting and patronising abuse of every ME sufferer who well-intentionedly went over there to try relate their experiences with this godawful disease and to try to get them to see the ME sufferer's side of things.

    I saw heart-rending posts by ME sufferers describing their experiences met with jeering and snide remarks and insistence that sufferers need to accept that their illness could be psychosomatic, and when the ME'r replied that no, they definitely didn't believe that was the case, they were accused of 'stigmatising mental illness' and lambasted for that. Any attempt to supply documents to try to help them understand that ME is not a psychiatric condition, is shot down with a torrent of abuse saying that the documents are not up to their own standards of what constitutes believable documented evidence, along with incredibly aggressive personal insulting of the provider of the documents (such insults are hurled as the declaration that the ME'r is a member of the 'Sarah Myhill personality cult'). There is a definite thread running through these, well, threads, of promoting mental causes for just about everything - one regular member even maintained that he had happily accepted that his RSI had been psychosomatic, because it went away when he stopped dwelling on it. (Right... so by the same principle, our ME, or 'illness belief', should evaporate too, if only we stopped dwelling on it.) They all go on and on about being 'scientists', but their lack of ability to think scientifically about medical issues is pretty astounding.

    So, seriously, please do not engage these people. They have shown themselves to have a complete unwillingness to learn anything about ME, only a willingness to have themselves proved right in their own narrow already-preconceived beliefs. They are only here to provide themselves with more 'amusing' fodder from here to take to their own threads and jeer at.
  14. Angela Kennedy

    Angela Kennedy *****

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    I'm happy to have the thread closed down if people want.

    Seeing the 'theories of mind' developing over there on BS (I've just noticed the irony of that acronym!) and the remote armchair speculative psycho-analysis being practised against some of us, it appears rational debate with the vast majority of their members is to be precluded by their m.o. As I said, there's a big problem with ethics over there.

    Apparently even our jokes are signs that there is something wrong with us psychologically (That's you and me Adam!).

    Maarten I think your comments are highly apt in the circumstances and your dignity is in vast contrast to the BS being spouted over there.

    I will say this before the thread closes. When i first encountered Ben Goldacre and the Bad Science forum, I actually, in my utter naiviete, wondered whether he, or they, might be prepared to consider the case of what has happened to the ME/CFS comunity. It is such a clear case of 'bad science' and 'woo' I thought they would be all over it!

    I've since learned that Ben Goldacre himself has a massive blind spot when it comes to psychobabble and 'mind-body healing' beliefs. His section on 'the placebo effect' in his book, in stark contrast to his apparent rationalist sceptical stance, reads like an account of a 'true believer', using the poorest of evidence to support that account. Perhaps this is informed by his mentors - don't know. This also seems to be the case with the members of the forum in general.

    But there is also the issue of rationalist, critical 'scientific' analysis VERSUS appeal to scientific 'authority', which are two different things, and for which the vast majority of BSers appear wedded to the latter. This is evident in their 'trumps games' around sources for example, where who and where it is written trumps anything else about a source. It is a highly naive way of looking at things at best, often degenerates into a power game at worst (and we see this on wikipedia also.)

    A careful sifting through of evidence, including analysing arguments etc. for coherence, empirical adequacy, comprehensiveness etc. appears outside of the abilities of many people claiming scientific authority.

    So it seems psychogenic explanations and therapies such as CBT, as woo-ey and irrational and confused/ing as they are, will not be subject to critical analysis over there because they are state-medically sanctioned wooquackery (a new word I made up! Ooh - inappropriate joking again...) Authority trumps rational analysis.

    I think some of the excellent points made on here, from Gerwyn, biopsychobabble, Maarten, Robin et al (sorry - too many of you to mention individually but you all know who you are!) will fall on deaf ears. And this is even without thinking about the Myhill case - where the real problems of how she is being treated by the GMC, and what will happen to patients because of that, means little in the 'game' (some of the suggestions on there are AMAZING for people claiming to be concerned about patient care!)

    Sadly I don't think BS is the place for ME/CFS advocates to explain the kafkaesque nightmare of the psychiatric paradigm of somatic illness to a neutral, analytical audience. But that is not our fault!
  15. jimmy plop

    jimmy plop Guest

    Can I just point out that the thread on Bad Science was originally absolutely nothing to do with CFS, it was to do with Sarah Myhill and her wacky website. Her opinions on CFS are largely irrelevant to the complaints directed against her. Her dangerous views on things like cancer and asthma are far more pertinent. It only became about CFS when we suffered an invasion of new users who made CFS the primary focus.

    Also, Ben Goldacre has next to nothing to do with what goes on in the bad science forums. He barely ever posts, and, by all accounts, doesn't even bother to read them much.

    Finally, it seems to me that no-one has actually bothered to read the threads on Bad Science (or if they have, they're only interested in misrepresenting them). Yes, some of the forumers enjoy a bit of verbal rough and tumble, however the main argument from the Bad Science side has not been that CFS is a psychological condition; rather the point has been that the vehement opposition to this explanation of the condition is a trifle bizarre and the vilification of the Wessley character is at best misguided.
  16. Angela Kennedy

    Angela Kennedy *****

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    What you have said is such an insult to those of us who HAVE actually ploughed through all of that crap. How dare you assert I haven't read the threads. I actually did read all of 'em. And looked at those interminable cat pictures! I deserve a medal.
  17. Adam

    Adam *****

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    Revised Troll Management Guide (Revised)

    Troll Guide
    TROLLS - A GUIDE TO MANAGING PARASITIC INFESTATIONS ON FORUMS

    1) Under no circumstances feed a troll.
    2) Remain inside FORUM (all previous attempts to seek out trolls lair and expunge them from hidey hole have proved futile)
    3) See 1 above.
    4) Talk amongst YOURS(ELVES)* in the presence of a troll, but never address them directly.
    5) Trolls can be baited and trapped. However, several peer reviewed studies suggest this is also futile. Apparently, trolls have no regard for science, good or bad, and utilise some kind of ancient magic (known as psycho-babbling) to free themselves from said traps.
    6) In the event of a sudden infestation remain calm at all times. Trolls appear to thrive upon hosts excitable behaviour.
    7) See above (1)
    8) Trolls get bored easily. A rule of thumb adhered to by Trollogists is follow steps 1 to 7 to arrive at 8). Witness trolls slope away.
    9) When troll(s) return repeat steps 1 to 7.

    * Trolls are allergic to Elves

    infest [in fst](3rd person present singular infests, present participle infesting, past infested, past participle infested)
    vt
    1. take over place: to overrun a place in large numbers and become threatening, harmful, or unpleasant [/B]2. live as a parasite on: to live as a parasite on or in something

    [Mid-16th century. Directly or via French infester from Latin infestare to attack, from infestus hostile.]

    -infestation [n fe styshn], n
    -infested [in fstid], adj
    -infester, n
  18. This isn't true in my case. I learn about "this illness" from the people I know that have it, including someone I've known for over 15 years. She has benefitted from pyschotherapy (psychotherapies that I don't have much time for, but they worked for her), but I don't use that as a basis for believing that all cases of ME/CFS have a pyschological component. I just thought I would mention it.

    Although I could learn a bit more from reading this forum, I've decided not to bother because there is far too much prejudice/entrenched belief here (note: I'm not referring to "illness belief").

    For example, Gerwyn seems to be obsessed with Freud. I've suffered from a combination of anxiety/OCD (& depression as a consequence, not unlike the depression that ME/CFS suffer from because the illness prevents them from doing/achieving so much) for almost 20 years, but I've never encountered a pyschiatrist that has mentioned Freud. I've encountered a couple of psychodynamic psychotherapists who are Freudians (obviously), but the pyschiatrists are merely medical doctors who treat mental illness using a medical/pharmaceutical model (which works for things like schizophrenia and bi-polar disorders, but is less successful with uni-polar/reactive disorders with more complex causes = off to the psychotherapists, but I prefer humanistic/existential psychotherapists instead of psychodynamic ones because I [being polite] don't have much time for Freud). What's with the charicature of psychiatry, Gerwyn?

    I came on here to try and persuade people that the Bad Science forum isn't full of monsters; we just don't think licensed doctors should be publishing unscientific crap on their websites. No more, no less.

    As for the thing that Min quoted about "trolling the f*** out of those stupid fU***** on the phoenix rising forums!"...

    I think that was supposed to be a joke too, touchingcloth never came over here and started doing that and, as prion said:

    It was a silly thing to say. I can't apologise for things other people have said (I'm not Jesus), but I wish they hadn't said it.

    None of the Bad Science people posting here are trolls. Some of you need to stop assuming the worst.
  19. MrX

    MrX Guest

    Just a few anonymous pieces of info you may be interested in:

    Not only did Goldacre study under Wessely, but Martin Robbins (mjrobbins) - the so-called 'Guardian Journalist' - has been registered at the same office as Wessely twice in the last five years. Make of that what you will.


    Oddly, Martin's work for the Guardian is not paid for out of the Guardian's usual bank account, but rather from an account that received several large donations from Novartis, manufacturer of the swine flu "vaccine". Donations made at around the time of the manufacture of the swine flu "vaccine" - coincidentally the same time that Martin was employed by The Guardian.
  20. Angela Kennedy

    Angela Kennedy *****

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    I'm sorry, but that means nothing without sources. Or are you having a little joke with the natives?
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