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Is this the second coming of reeves and wessely et al

Discussion in 'Action Alerts and Advocacy' started by flex, Feb 7, 2010.

  1. Martlet

    Martlet Senior Member

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    That some people are pessimistic or despairing is not a matter of opinion. It has been stated by various members of this forum. But to say that some are pessimistic or to take people at their word when they write that they despair of anything happening is not the same as calling them "pessimistic despairers." Putting the two words together to label people and misrepresent what thefreeprisoner said is your doing. As for length of sickness, I think it was you who introduced that, too, in what came across as condescension.

    She owes you absolutely no apology.

    I have seen no hounding.

    That is absolutely uncalled for. Would you please get back onto topic and save us from having to step in?
     
  2. oerganix

    oerganix Senior Member

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    I agree with Flex. I felt condescended to and put down by freeprisoner's comments on this thread and on others. I would hope a moderator would be a little more tolerant of opinions that differ from her own. Like Koan, I have been involved with this issue for nearly 3 decades and I do not appreciate the characterization that those of who are aware of the psych lobby's manuevering are simply pessimists or the inference that we don't know what we're talking about but she does. No one said she doesn't have the right to her own opinion, but to infer that her posts do not have more weight as a moderator is simply not accurate. The 'pollyanna' attitude is fine for those who prefer it or for whom it is natural, but there is also room here, I hope, for the well informed realist.

    For anyone who is unaware of what the psych lobby is up to, check out the thread on this forum alluded to by Flex: 'the psych lobby strikes again'. There is an intercontinental move on to have ME/CFS declared a somatic illness, much as it has already been done in the UK. The psych lobby on both sides of the Atlantic are trying to get the WHO definition, which currently calls ME a neuroimmune condition, to re-catagorize it as "somataform". This is a serious issue and I thank Flex for bringing it up.
     
  3. flex

    flex *****

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    Martlet,

    I am the one who set this thread up and set the topic and have asked for people to be on topic. If you are going to step in step in now. I take back nothing I said. One minute people are entitled to an opinion the next minute they are not. My Opinion is that free should apologise for uncalculated remarks. I am entitled to that opinion. Moderators are here to apply the rules not judge on differences of opinion.

    The uncalled for remarks have come from Freeprisoner and she has not been on topic. Again this is my opinion. I have posted here a number of times on this thread about ways of approaching advocacy relating to this thread and have been bang on topic. Are we not allowed to question moderators?

    Oerganix quote
    " I felt condescended to and put down by freeprisoner's comments on this thread and on others"
    End of Quote

    Koan Quote
    Hi thefreeprisoner,
    I appreciate your goodhearted attempt to counter pessimism but I must agree with Flex that, in this thread, it is a bit beside the point.
    End of quote

    Lily Quote
    I disagree with Rachel, (free prisoner) and in my opinion her comments are very condescending. However, it is her opinion and she is entitled to it. No apologies are necessary, IMO.
    End of quote


    Owing someone an apology and being humble enough to offer one for misjudged comments are two separate matters. Its is a matter for freeprisoner to decide wether she has upset people or not and wether she offers an apology.

    Direct quotes from freeprisoner:
    1) A wee note here to counter the pessimism
    2)And yet people are still despairing and saying we ought to be doing more
    3) I think that might not be as helpful as you assume, because despair leads to inaction.

    All posted on this ADVOCACY thread about keeping our eyes on the establishment. I do not see these remarks as encouraging or helpful in any way. In fact they are quite deflating especially to be posted on an advocacy thread.

    The issue here on this thread is not about "despairing or doing more". Its about keeping our eyes open.

    Please can we be informed by free:

    Who she thinks is despairing.
    Who is pessimistic
    Who has been lead to inaction and by whom.

    Martlet Quote
    "As for length of sickness, I think it was you who introduced that, too, in what came across as condescension."
    End of Quote

    Martlet I did not raise this issue. Infact I said "aside from length of illness" meaning I was not judging that matter.
     
  4. kurt

    kurt Senior Member

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    Probably the simplest thing we can do is to discuss the problem on its own thread. Then people who have the clarity of mind and ability can write letters or messages to bloggers, advocacy groups, to regulators, and also to the media. This would be the first step in my view anyway, a type of 'consciousness raising' that this is a big problem coming our way. Then when there is enough discussion, those involved need a voice, and that means we have to find someone to represent the situation and begin a type of campaign (an initiative) within the CFS world, and things go from there.

    Please stop this type of posting flex. Talking about people when you disagree with them, rather than addressing their ideas, almost always ends up in an abuse of forum rules. Whether or not freeprisoner has made a miscalculation is for her to decide. We do not demand apologies from someone just because we disagree with them, and to my reading she was not insulting anyone or breaking any forum rules. Note that I would defend your right to your opinion just the same if someone was attacking you this way.

    Great idea. Do you have any links for this? This forum has become a bit overwhelming to sort through...
     
  5. Lily

    Lily *Believe*

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    [my bolds]

    I disagree with Rachel, and in my opinion her comments are very condescending. She did seem to miss the point as Flex pointed out. However, it is her opinion and she is entitled to it. No apologies are necessary, IMO.

    I often overlook such things for several reasons, not the least of which is that tact is not one of my better qualities, and thankfully I know that.

    I thought that Kurt carefully and tactfully pointed out that moderators are entitled to their opinion and they do not have an obligation to always be right.
     
  6. flex

    flex *****

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    @ Kurt

    Kurt you will see if you read my posts over that I never "demanded" an apology and have clearly stated that it is a matter for freeprisoner to decide whether she does or does not. However it seems to be being overlooked that a number of people have now stated categorically that they have been upset by her comments on this thread- and on other threads.

    Kurt quote
    Please stop this type of posting flex. Talking about people when you disagree with them, rather than addressing their ideas, almost always ends up in an abuse of forum rules.
    End of quote

    I can not address any ideas from freeprisoner as she has not raised any on this thread. She has just come on and been condesending. I can only talk about the issues she has brought up if I wish to address her on this thread.


    As far as helping Suzy send her a PM at ME agenda. She may or may not require help, it was just a suggestion that came up in the chat room and I know that she is really snowed under.

    Aside form the ding dong that has occured on this thread to be quite honest freeprisoner can type like Speedy Gonzalus on speed. She is very fast in the chat room. I think she would be a good candidate for helping - she has also said that she used to be a university researcher. I really feel this DSM issue needs as many hands on deck as possible.

    Also as Kurt suggested it is crucial that we keep on discussing these issues on this forum and holding people to account with public scrutiny.
     
  7. Martlet

    Martlet Senior Member

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    Once again, Flex, moderators are entitled to join in conversations and to express their personal opinions, exactly as if they were not moderators and it was in that capacity that thefreeprisoner involved herself in this discussion, as she is entitled to do. We are still scratching our heads, wondering what her being a moderator has to do with the fact that you disagree with her viewpoint. Perhaps you are not distinguishing between people writing on their own behalf or writing as moderators. Well, just so you know, when I am writing as a moderator, you will seeModerator note: in red ink so that there can be no confusion.

    So, writing as myself, I am completely taken aback at how much people are reading into thefreeprisoner's comments. I have read them and re-read them and can find nothing condescending or hurtful. Then again, offence is a funny thing. It has to be given AND taken.

    I have also been back through this thread and Muffin is not participating, so I can only assume that you are going back to earlier comments in another thread, where she said: "But we also have to fight and sometimes that may get ugly" and some of us stepped in and disagreed with "ugly" methods in favour of methods that actually worked in other situations.

    Okay, you've registered your disagreement with another's opinion - several times. Your comments have not been moderated. Now, can we get back to discussing the topic in hand or I will have to step in with red ink to remind everyone that this discussion is not a "I've been sick longer than you" contest, or a "I'm more offended than you are" game. I see one page about advocacy and then a whole lot of time and energy wasted on assuming that because someone is a moderator, that they can only stand around as referees in other people's boxing matches.
     
  8. flex

    flex *****

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    Marlet I must have the opportunity to reply, then back to topic. Its not her viewpoint its the way she addresses things and her condescending remarks. I would still be of this opinion even if she wasn't a moderator. A number of people have stated this now. As for being a moderator surely she should be more aware of this that than anyone else. I think people should be entitled to offer wisdom of experience and no one is suggesting this is a contest of, "I've been sick longer than you". All the moderator comments on this thread have been directed at me when there are a number of other people who have raised or agreed with the issues. None have been directed at the freeprisoner.

    And please please note it is not me that people have remarked is of topic. As far as I am concerned this whole matter is a distraction from the thread title. The thread that I posted. This is the last I want to remark on this whole ding dong and I really want to get back on this as an Alert and Advocacy matter.
     
  9. Martlet

    Martlet Senior Member

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    Done!

    The thing is, Flex, we moderators have not been imbued with any divine wisdom (well, not on account of being moderators, anyway ;) ) and we will express opinions with which someone might disagree. You can do the same with us, when we are not being moderators, as you would do with someone else. Either ignore us or respectfully disagree with us.

    As to other people's opinions, what I've seen in lots of forums is that when one person throws a stick at another, some people will join in and all those who agree with the one on the receiving end of the stick remain silent because they don't want to get beaten with a stick.

    YAY!!! Well go on then. Or do you have an overarching need to reply to this one, too. :D
     
  10. oerganix

    oerganix Senior Member

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    Marie has posted this information in another thread, that the proposed revisions to the DSM will be published tomorrow: (We are eager to see whether CFS will be mentioned in this bible of the psych associations, and if so, just how it will be characterized.) (Best case scenerio is that it is not mentioned at all, but there is a group of psychiatrists on the panel that wants to claim CFS as part of their "workload". The psych lobby has quietly been working to have the law changed to allow forced commitment to a mental institution to require only one doctor's signature, instead of the formerly required two. So, one doctor can have you committed as "a danger to oneself", as was done to Sophia Mizra in UK when she was unable or unwilling to do the exercise "therapy" government doctors recommended.)

    Reminder: APA to post proposed DSM changes tomorrow, Feb. 10
    A new website, www.DSM5.org, is expected to be launched tomorrow, February 10.

    The much awaited proposed changes to the previous DSM should be posted there as well as information on how to comment.
     
  11. flex

    flex *****

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    Well seeing as you asked Martlet, I still dont see any acknowledgement here from you that free has made an error of judgement in her comments as stated by other people. It is only myself that has been on the recieving end of two moderators when people have admitted they have taken offense to her comments and posted and quoted them.

    As for people throwing sticks I've been ducking them all day from moderators ;)

    DONT FORGET YOU ASKED ME IF I WANTED TO REPLY I REALLY DIDNT WANT TO
     
  12. Koan

    Koan Be the change.

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    This is very chilling.
     
  13. Martlet

    Martlet Senior Member

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    Moderator note: Okay, that's enough. Back to topic and stop discussing other members.
     
  14. flex

    flex *****

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    We need to keep an eye on the establishment as I have stated earlier in this Advocacy thread. They always have a tendency to stick together and can not admit they were wrong as they will be seen to loose face. This thread needs to get on track and look at people who historically have had so much power and want to keep it in their ranks even when they have a dangerous loose cannon amongst them. Reeves for example is what should be considered a loose canon because he made such damaging comments. Then when everyone else could see the point he was invisible. Thats why he had people doing his talking for him. This is because he was so ill informed and had set attitudes. When the brown stuff hit the fan in the CFIDS meeting with the CDC he just kept his head down. There was a clear vote of no confidence in him from the outside but his team manouvered around him and he is still there with the potential to do damage. Lets hope he shuts up now and does no more damage, but has he learned his lesson? I really hope so.

    Goodbye everyone.
     
  15. Mark

    Mark Acting CEO

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    I think this is such an important issue that Flex is raising, and one so easily missed amidst our rising tide of optimism, that although I don't really have the time to post at the moment I want to encourage people to think very carefully about the issues being opened up here.

    Flex's analysis is slightly different to what my own has been, because I've been thinking mainly about the 'game theory' position of how the psych lobby would play the game if they wanted to guard against the future discovery of a physical mechanism for some CFS. I've been assuming - similarly to some of Gerwyn's analysis elsewhere - that their finding of no XMRV in Wessely's patients could in the future be used to claim that, even though a lot of people with CFS have XMRV, there are large and well-defined patients groups (Wessely's patients) who do not, and so there's still a whole lot of people for them to treat as CFS. Then all they have to do is use a strict XMRV test that draws the line a long way up towards 'severe' and they get to keep a big proportion of us under their wings...

    Flex is suggesting different and even more worrying possibilities, but they are real ones IMO. They will certainly claim that even if XMRV is real and physical, until there is a treatment available, CBT and GET are still the best treatments available; that argument will remain unchanged until a treatment has gone through the process, and that will probably take many years. They will also continue to claim it's a valuable and useful treatment even after that point. And as Flex points out, the existence of an organic illness in no way rules out their somatising theories because they have been mumbling incoherently about 'grey areas between physical and psychological' ever since it became politically impossible for them to deny the existence of a physical component, so they are quite free now to continue to emphasise the psychological component.

    We ignore all this at our peril. Reeves and Wessely are not going to retire or be retired by default however XMRV plays out. So long as there is a large enough subset of people left over with (however broadly) CFS-like symptoms who are XMRV-negative, they know that they will then be able to claim "Ah, that's why it was all complex and controversial, there was this XMRV thing mixed in. The people left over who don't have XMRV, they're the true CFS patients, the true somatisers". They may perhaps then loosen their definitions and look for other people to make the numbers back up - or they may not need to, because they will soon be getting huge extra numbers of people with depression to treat anyway, so they may be able to make the numbers up that way.

    So this fall-back position gives them great security - unless it turns out that the whole of what they call ME/CFS has a single physical explanation.

    But that doomsday scenario (for them) is exactly what XMRV purports to be - when you say 98% of CFS patients tested have XMRV, then even if you are only looking at a subset of CFS, you are raising the possibility that the entire patient group might disappear overnight! I feel sure that the fact that this possibility is now being widely and seriously discussed must have put the wind up them, and they must surely have started thinking about the implications for them if it turns out to be true, just as much as we have. They must surely have plans and strategies for how they will deal with various scenarios, and they must surely be discussing - you could say plotting - their way forward.

    As has been pointed out, they do so in private discussions, whereas we do so in public where they can read exactly what we are thinking. If you think of things in terms of a war (as we have been pretty much obliged to) that's a pretty major disadvantage. However I think you can actually go quite a long way towards predicting the behaviour of institutions, just by understanding the public arguments they make and trying to understand their mindset, and analysing them as psychopathic units that act in their own self-protective interests. They will follow the best strategy for them - work out what that is, and that's roughly what they will do.

    So we can't know what's going on in their minds, what they're planning, what lies round the corner - but I do think it's very intelligent of Flex to raise this issue and to suggest that we need to think a little less naively about what's going on. We can laugh at the IC PCR test, and watch in disbelief as they apparently make a desperate bid to cling on - but surely we have to pause as well and think "Surely, they must have something up their sleeves here?". I think it's important that we do keep a very careful and suspicious mindset when thinking about what the Wesselys and Whites are planning next.

    The DSM categorisation review does seem enormously important to us as well, whenever I've seen that raised it's struck me as an important thing to watch that could easily get missed while attention is focused elsewhere. There's no real reason why the as-yet-'unproven' XMRV research should affect the categorisation deliberations, and the assumption that XMRV makes it less likely that CFS can be categorised as psychological, is a dangerous one. Actually, a confirmation of XMRV in 50% of CFS patients could even make it MORE likely that CFS will in future be recategorised as a psychological condition rather than less.

    The argument would be roughly "well, we were sort of 50/50 as to whether it was psychological or physical - turns out that about half of them were really sick and the other half were making it up". And sadly, there are people with ME/CFS even now who would agree with this division of ME/CFS and who suspect that their own real condition is being devalued by the somatic, psychological and psychiatric illnessess of other people with the CFS label - who they therefore blame for their situation, seemingly without noticing that they are accepting the psychologists' theories by doing so. Some of those former ME/CFS sufferers will turn on X-negative fellow sufferers and abuse them in exactly the same way the psychologists do now - but with more feeling - as soon as they get their X+ result. Some are content to do this already based on guesswork, so imagine what they'll be like when they get approval! Divide and rule has never been easier than it will be in this particular case...

    I can see why raising all these sorts of fears might appear negative and despairing, but in this case I do think Flex's warnings are well-timed and appropriate and I'd like to see further analysis of the psych lobby's tactical position and likely strategies. Reeves and Wessely appear to be in very different situations at the moment, but both deserve close scrutiny...

    Finally, I'm left with one conclusion as to our appropriate strategic response to their manouevres, whatever that may be, and that is to say that their plans can only succeed if they are able to keep us both ghettoised and internally divided. If we are able to reach out and make connections with other medically unexplained conditions, other 'somatic' conditions, and join together in saying that this unscientific somatic diagnosis is unacceptable for all of us; if we are able to remain unified in our support for each other even after some of us have been legitimated and others not, then the psych lobby won't have a leg to stand on - for a brief window, they cannot stand against our argument that if they were dead wrong about all these XMRV people, they cannot be trusted with the rest of the medically unexplained. Whereas if we play into their hands and fight amongst ourselves, they will be able to do pretty much whatever they want.
     
  16. cameron

    cameron Guest

    That's a really interesting post Mark. Also don't forget the issue of " proving the extent of physical symptoms". Just because you have XMRV doesn't mean they cant say you are low on the spectrum and everything else is about somatizing. Lots of illnesses have Physio and OT as part of the treatment, to improve "functioning". This is increasingly being replaced with CBT and GET. They may very well still have these "treatments" at their disposal and send people on them as a "punishment" for proving them wrong with XMRV. The courses are Government funded and have long contracts so they are not going to just scrap them. They are already pushing this for MS.

    There will be one DSM revision after another, and it is clear that the psyches want to have the whole world at the mercy of the DSM. They don't really care about XMRV if they can dual code an illness especially with the manipulation of issues like "brain fog".

    We need to discuss these issues here so that more people are aware of them, but I think action and advocacy is just as crucial to block this kind of new era.
     
  17. flex

    flex *****

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    NOTICE TO REEVES WESSELY WHITE CHALDER etc

    Many people may suggest it has been shown recently that your alleged flawed and subjective theories on ME/CFS appear to be increasingly just that. For many years you have affected our community and have spent the best part of your working lives being remunerated through various sources for your involvement in ME/CFS.

    We are aware of the DSM and the influence this has on medical practice. You are aware that the DSM is considered by many to be a collection of subjective "diagnosis". It light of the recent reshuffles in the CDC and the confusion over the IC XMRV testing it is fair to say that the media spotlight has shone very brightly in your direction. This has happened mainly because of the free movement of information on the internet. Many young people pay no attention to newspapers and TV news and prefer to make their informed judgements via the internet.

    This is a new era. It is fair to say that this type of scrutiny will continue in the interests of an informed generation of people. We the internet generation shall certainly keep a close eye on policy change in medical practices. We shall be able to second guess policy shift and how that may affect us positively or negatively. This is certainly different to the last generation of patients as we as a global population can mobilize quickly and peacefully to combat any strategy that we consider detrimental to us as patients. This may well re spark the connection between the internet generation and the TV and newspaper media. It will probably even draw in the new generation of independent film makers and could even interest a Hollywood producer.

    Amongst this patient population and new generation there are many journalists, scientists and computer experts who can, with such wonderful technology as Blackberry's reach politicians speedily with well packaged accurate information. A worldwide population of thousands, even tens of thousands, with the desire to spread the scientific truth at the click of a mouse. A beautiful marriage between technology and scientific advancement I'm sure you will agree.

    In the coming months there will be much accountability being placed on various medical groups and scientists in the areas surrounding ME/CFS. This is a fascinating area of science as I am sure you will be aware. I sincerely hope that we the patient group get the treatments and biological breakthroughs that we deserve. Many of us would be deflated if we had to spend more time with two sides of a debate raging on. So, science will prevail and whichever theory of ME/CFS comes out on top will not have to answer as to why their perception had such damaging affects on patients.

    It would be fair for that group to allow true science to prevail. I can only suggest that it would lead to them being the authors of their own misfortune, were they to further open themselves up to public scrutiny. The scrutiny will probably be done anyway and may well go back decades in its quest to learn from the past mistakes and errors of judgement. I really wonder what a team of thousands of internet wizards worldwide would uncover and be able to learn from for the benefit of science - it could be endless, if indeed they were to go back decades. This could be wonderful for science and stop any future misconception that could alter the way forward.

    May the truth prevail without interference.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I took a look at the DSM proposals and they actually look like an improvement. From the "rationales" for renaming various Somatoform disorders to "Complex Somatic Symptom Disorders":
    "It clarifies that a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion B—attributions, etc) is present." note: Criterion B is basically hypochondriasis.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Send comments to the DSM 5 people at the below link:

    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368#

    FWIW- here is my comment to APA:

    This looks very good!! I have ME/CFIDS and was very concerned that "CFS" was going to be named. I was pleasantly surprised to see this language in the rationale: "It clarifies that a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion B—attributions, etc) is present." Your thoughts here are mine exactly! Please be sure to include this language prominently in the final product.
    I have previously criticised Dr. Sharpe strongly. I am very glad to see such good work here.
    Thank you, Justin Reilly
     
  20. flex

    flex *****

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    Justin,

    Lets keep our eye on the ball. Have a look at this link. Under Conversion disorder and Somatic Symptoms/Disorders there is a lot of spurious wording linking known physical illnesses with psychological disorders/symptoms. That's just one example I haven't read the whole thing. It is worryingly close to the description of the NEW department set up that Reeves is going to be working in.

    My opinion is there may be a lot of hidden language in there that can be interpreted how one likes. The main shift is away from using the term "medically unexplained symptoms". They know that whole concept is a nonsense. It could be a simple re marketing stratergy to accept someone has a physical illness but still take part ownership of them with their ongoing subjective rubbish. They want an approach/terminology that is "acceptable" to doctors and patients, they have stated this many times. If they can have part ownership in every organic illness this opens up their market drastically, it doesn't shrink it.

    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=8

    I think we have to challenge that NEW department at the CDC. Even if it was to set of in a well meaning fashion, which I am wary of, Kurt has made an excellent point above about how things evolve. Its a numbers game in departments. If you can employ your mates, or get them employed, then the balance of policy can shift drastically. I think we need to keep going and get Reeves out of the CDC altogether. This will not be the last DSM ever.

    Personally I would rather he didn't stick around for us to find out what may happen in the future. That goes for everyone in this NEW CDC department. Lets not allow the CDC to use this NEW Department as a happy medium hunting ground for psychologisers.
     

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