Sunday, 21 October 2012

Blog News. Comments Being Moderated

Dear All

Apologies to our civil and sensible posters for the nonsense that is occurring at the moment. Hopefully normal service will resume, once the children have got bored.

I guess it is time to limit postings on you-know-what again, because it brings out the worse behaviour. My cover or should I say alter-ego has been blown, yet again!. I'm not sure how to react. Guess I should give up fishing :-), and start running?
 
For the time being comments are being moderated, so for the trollers, we do not want you here! 

Please be patient, comments will be posted eventually, but it's the price we pay when the few idiots start this nonsense and irritate everyone. 

The Twaddle will end up in the Spam Bin and not be seen by the Readers.

P.S. I have put on a better outfit so I look better, when some of you send my pic to David Cameron again no doubt.

15 comments:

  1. Anon Said
    Neurologist, Pharma and governmental agencies need to understand the CCSVI procedure is not a treatment for MS. It therefore is not a threat. It treats autonomic symptoms which most MS patients suffer. If you have MS before the CCSVI procedure you still will after so Neurologists jobs are not threatened. If pharma can prove a drug halts progression MS patients would still benefit from taking them. This leaves government. You owe it to your people to explore options and seek the truth. Forcing people to go underground or abroad for healthcare is unconscionable.

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    1. Deadmanwheeling said
      I posted it trying to show we are not thinking CCSVI is a cure for MS. I am not spamming your page....i posted anon was because i couldn't remember by skantly used blog log in details

      Delete
  2. I know who this quote comes from probably the guy who did it, that is why I removed it before posting. The rest of quote was a plug for there person business which was removed as useual.

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  3. Why someone (anon) posted the comment here I have no idea and further suggests it is spam

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  4. Why did a certain person at 'ThisisMS' have to 'out' you, MouseDoctor?
    As the first commentator wrote, there's no conflict, so I don't get why they at CCSVI-org hate you both so much? It reminds me of that very unpleasant 5 minutes last night on PM, as Eddie Mair read out that poisonous tweet from Nick Griffin.
    I'm going to anon this post, as I'm about to write something that will inflame the CCSVI crowd, but I've rarely been so shocked.
    I went to the facebook page and read a post about BG12. One of the posters was upset as the drug licensing was going to be delayed and she has Marburg's MS.
    Joan Beal advised her to take various herbs. Not go to a neuro to get the best help, but to take milk thistle. As we all know, Joan Beal is not a doctor. If (when) this poor woman with Marburg's MS succumbs, I hope she sues Joan Beal for everything she has.
    After this, I'm not going to go anon. I have MS though and am easily stressed. I don't want my details posted on a blog or tweet by the CCSVI thugs.

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  5. Re The need to moderate.
    I agree there's a need to stop a lot of the nonsense, but if a post is put up re the 'C'' word then surely it's acceptable for people to comment with their views.Obviously these will be judged by some as they go against the opinions of this blog, as to be inflammatory.
    I also agree if the dreaded subject is brought into a post which is irrelevant, then yes class it as 'trolling' , but also take some responsibility for what it appears to me anyway, as 'holding a red rag to a bull'
    Surely everyone can agree the common goal is to see an end to MS and as a result, especially if you're in the eye of the storm passions will be running high. Frustrations do run high and I'm guessing it mainly comes from people with few if any treatment options and can see their's or their loved one progressing unabated.
    This is not to say that desperate people will jump to any latest fad or miracle cure, because I think by the very nature they are on here shows they have the intelligence to read through the latest studies/ literature and will sometimes go toe to toe. This in no way should give carte blanche for people to tell others where to go ( water off a ducks btw), but should give grounds for reasonable discussion and if necessary a frank exchange of views and if at the end there is no obvious winner, then on to the next paper.( just politics)
    This is just my opinion and is no way intended to inflame the situation, but the general vibe felt ( by me anyway), was that the intention was to cease all things CCSVI "it's finished" and may well have added to the intensity of the comments. What I'm trying to say is there is still a lot to learn, (by many) and my post the other day was saying that in effect, maybe I could have done it better, I look forward as always to see where we go next and hope new technologies will lead the way and hopefully stem cells hold the key if not addressing the cause.

    Regards as always.

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    Replies
    1. Hi Andy
      My feeling is that any further posts on CCSVI will only attract the zealots who cannot engage is a reasoned debate (you are an honourable exception. Many of the comments put off many of our visitors to the blog, who we don't want to alienate.If there are any further posts re CCSVI, I don't think comments should be enabled as it is only asking for trouble.
      Anyway let's hope things can calm down and normal service can be resumed asap.

      Delete
    2. I was not planning to cease things all CCSVI, because research is still going on. However, I have given this serious consideration. It may be more peaceful if we did. However we do not run away from issues. Prof G may have other views and he is the boss.

      I was planning to re-instigate the monthly slot of posts to limit disruption to other readers who are not interested. As a gesture of good will I may leave comments on...I will not guarantee to reply, unless what is said is total rubbish. Maybe if there is something earth shattering we will change this. However, needless abuse is needless.

      Yes people are entitled to views but there are ways and there are ways
      Many people do not want to see battle grounds, but we need to defend our position. Prof G is used to taking abuse (water off a ducks back) our readers are put off by this so neuro-baiting is not a sport we want to play.

      We agree that trolling has been occurring. Posting the same message on multiple posts repeatedly has been occurring and is just trolling. At least this time the abuse was not personal.

      Likewise people need to think about the comments that are aimed at us directly or at our our profession, we are not saying do not make them but we do not need to see it hour after hour day after day. That is not good behaviour and is in my opinion quite irrational and shows the posters cannot assimilate information. Once you have our response, you have our response, on these often retorical posts, enough is enough.

      Delete
    3. "Holding red flag to a Bull"...Sometimes that is what research does, some progressive MSers have issues with some of the posts we make but we expect reasoned responses not concerted bulls**t

      Frank exchange of views...yes but it is tiring exchanging the same views over and over again.

      Delete
  6. MD's identity has never been a secret! The blog has his picture, where he works, resume, videos, ...

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  7. "Why do they hate you"
    The Reality sometimes hurts

    Anything said that they do not agree with inflames the CCSVI crowd..it is a waste of energy, no one wins. Don't get yourself stressed.

    If the person surcumbs to Marburgs I am afraid they will not be around to sue anyone.

    However, Joans advice is only advice even if it is misguided. It is up to the person to listen or ignore advice and so it would be their own fault if they take medical advice from the internet. My advice is talk to a neuro and do get any advice not. They must already be under care of a neuro if they have been given a diagnosis of Marburgs.

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  8. The advice from Joan was to look at some research done on NRF2 activators. http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=137548&XNSPRACHE_ID=2&XNKONGRESS_ID=150&XNMASKEN_ID=900 In this research, which is an abstract presented at a conference, protandim was more effective than BG-12. Protandim includes milk thistle, green tea extract, and curcumin among its ingredients. I think it is reasonable to consider this research if considering BG-12, but I wish it was of a larger sample size, at a US institution, peer-reviewed published, etc.

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    Replies
    1. As I say in vitro smeetro, in vivo veritas.

      You have to be careful about saying something is better. In the above case the study was looking at cell culture in a test tube (in vitro). Maybe protandim was better than dimethyl fumarate (BG-12 is a variant of fumarate as I understand it has better activity in terms of how long it hangs around in the body). But what happens in the whole body (in vivo) is what is important). There are drugs that are more active in a test tube, but in the body maybe the more active one it is more rapidly degraded and is gone in a few minutes whereas the slightly less active other hangs around for hours. Which is better?

      Delete
  9. I actually initiated the thread over at TiMS http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic20980.html#p199358
    I didn't mean anything but respect when I started the thread. I appreciate that you did some digging into the dispute between Dr. Sinan and Dr. Alroughani, and shared what you found.

    I read here pretty regularly but have not posted before today. As for CCSVI, there's a lot of waiting for research to come in, and trying to figure out what the research means when it comes in. I think we all have the best interests of people with MS (as well as people with CCSVI, if it exists, as I suspect it does) at heart. I am a believer in evidence-based medicine.

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