Another Forum For The Hijackers Please?

Everyday living
1

I read here most days but don’t post much these days.

I’m disturbed and puzzled to see valuable and useful threads being locked or deleted because someone without MS insists on hijacking them for his own agenda?

Who is this forum for - people with MS or people claiming to have found the holy grail and therefore pouring derision on those of us who choose ‘Big Pharma’ type treatments cos (obviously) we’re part of the big conspiracy.

Could we have a forum for people without MS to post ‘cures’ / adverts so we could all ignore them in peace and get back to the real business of talking about what genuinely helps individuals with MS please?

2

I couldn’t agree more

3

A good idea,

Thank you, Warrior Princess,

Wb x

4

Great idea Anu - I couldn’t agree more! Teresa xx

5

I could suggest that we could call it:
“Quackers”
but some people might be offended - so I won’t.

But seriously, what a great idea. On another (non-health related) forum the moderators have the power to move posts into what they consider to be the correct forum. Of course, there is a down-side … …

A post promoting (say) a treatment based on Mongolian Slime-weasel Sweat, or Oil of Evening Triffid, would clearly drop into anu’s “cures” category. But what of LDN? A post claiming that this is the only cure that works would again fall into the “cures” category - but since:
a) A lot of people here have used/are using it, and have said just what benefit they derive from it.
b) The patents on LDN have been bought by a pharmaceutical company, and they expect to have a Stage III trial in hand very soon.
That puts it into the category of a serious medication awaiting trial, certification, etc.

Geoff

6

hi anu

agree with all of the above

baz

7

I also agree with what the others have said.

Janet

x

8

Me too Sue x

9

Me too. I’ve been thinking a lot about this. Damn - it’s eating into my thoughts instead of enjoying life, I find myself wondering how to fix this, as no matter how upset we are over EJCs comments, he’s still here and still hi-jacking threads.

So, this forum is for people with MS (other other illnesses that are just as horrible and disabling).

A suggestion would be for those who are posting about their loved ones with MS to go to the carers forum and perhaps a subsection there for them to tell other carers all about how well (or not) their loved one is doing?

Those of us who are ill and on a treatment regimen that seems to be working - be it diet, LDN or DMDs or the newer drugs, can still talk to each other. The groups aren’t mutually exclusive. Gosh, shock wow!

I take Rebif, LDN, Vitamin D3, B12 by injection, diet - a strict one that has changed my life (yes, those who know me, I cheat occasionally) and a load of other drugs to kill pain and keep my blood pressure down and a tiny dose of Citalopram for panic. I realise now, that my panic is related to an MS attack in 01 that affected my impulse control. So yeah, that’s MS-related as well.

Those of us who are ill and who are finding it hard to get by, with no drug therapy to help, need this board too. All of us who are ill with MS (or similar - this is getting a bit 'Life of Brian-ish) should be here, on this board. For many of us, it’s the ONLY place where we can find others who may be able to help.

The non-MSers, have no emotional links with the DMDs (in general) and they can write what they like about them - but this is very upsetting to those of us who fought hard for access to drugs. It’s only now 21 years since the trials that the long-term statistics are coming out and yes, the DMDs make a difference. We care about our health. We have MS and lots of us are scared and we also have strong emotions.

So, I suggest that EJC gives this forum a rest from his wisdom for a couple of weeks - perhaps a Christmas break? We can get back to normal (whatever that is) and finally stop getting so stressed.

Webteam - please read this. We do need a break from this stress. Please, please read it and respond?

K

xxxxxx

10

Well said, HWP.

I agree wholeheartedly.

S.

11

I tend to agree with you Anu, although I do find that alternative therapies have their place and we do discuss them on this site. I was nearly put off of Betaferon a few years back although can’t say that my disability is any better than my friends who do not use DMDs. I do think that my ‘invisible symptoms’ are less aggresive (at the moment anyway).

Wendy x

12

I am not sure I fully agree. I like to hear all sides of an argument and then make my mind up on what I have read. I did this with LDN. I thought long and hard about every bit of written thing I could get my hands on before deciding that the potential benefits outweighed any risk. I am happy with my decision.

Agreed any blatently commercial posts should be either removed completely or put in an area that is for people trying to sell whatever. And probably the same for those that are obviously the rantings of a nutter, but genuine opinion should be tolerated even if it goes against popular wisdom.

Remember just becuase it is posted, you don’t have to read it, you can skip over and on to the next one.

That is my thought on the subject, for what they are worth.
Regards,
Paul

13

I have tried to exercise my right to skip over the posts in question. However, when the front page of any forum has the same topic posted repeatedly it is difficult to ignore. And, I suppose that is the point of anyone who is posting repeatedly.

Others who have their opinions about their specific things-Rizzo with scans/general knowledge/DMD’s, Whammel with LDN, George with benefits/general knowledge-did not ever from what I can tell come on to the forum as a brand new member with their own agenda. They seem to have come on for the same reason most others have-to be supported, to support others, to chat and share with others in the same situation.

To me, that is the difference.

S.

14

I understand what you are saying and at that point it should fall into the abuse category and the moderators perhaps should remove them. I know that happens on other forums, very quickly at times.

Paul

15

I’m not understanding this thread. Wasn’t this (“another forum”) exactly what EJC was calling for in the first place?

As far as I’m concerned, there already is another forum: the rest of the Web. No shortage of places out there for people to discuss any number of conspiracy theories or “alternative” (some would say bogus) remedies. Why on earth would we want to give such things a dedicated home here, and appear to be giving them the MSS rubber-stamp of approval?

Rightly or wrongly, people will assume that IF they host a forum for it, then it must have the blessing of the MSS. One of the reasons I signed up for this MS forum, and not any other, was I believed it would be “safe”, in the sense that information I encountered would be likely to be reputable and reliable. If we start saying ALL avenues are equally valid, and setting aside forum space for people to spout baseless propaganda, won’t that be giving it an air of legitimacy?

Besides, staff have already made it quite clear that isn’t going to happen.

The best tactic is just to ignore folks who aren’t neurologists, and don’t have MS, yet somehow think they’re in a position to lecture those that do about our “mistaken” thinking.

It’s quite simple, really. Who would you rather listen to? A neurologist? Another person with MS? Or none of the above? If somebody has nothing that qualifies them to talk about the subject, then weigh their input accordingly.

/End of rant

Tina

16

This thread is very much needed in this forum. A few threads i have been very interested in have gone far off topic and then locked. I have seen so many claims of a ms cure that are cons, trying to get money from us. So i can see why this issue is being brought up. But remember theese forums are here for us with ms, people with ms type symptoms and people effected by ms in general. Its a great forum full of people with help and advice, just needs a lil christmas spirit.

17

Hi again,

This post was meant to be tongue in cheek.

I enjoy reading all sides of an argument and of course wouldn’t want anyone sidelined into a single topic forum.

However, I have become heartily sick to see occasional users, one very recently, spamming the forum and stopping genuine debate with their holy grail of a cure which makes conspiracy theories of DMD’s etc.

Very often they don’t have MS, they haven’t experienced the everyday disability that those of us who have MS have, they don’t intrinsically understand that we will try WHATEVER WORKS FOR US.

They may claim to have a silent family member with MS who is being helped by cure A, B or C. Available at clinic 1, 2 or 3 and at a cost of X, Y or Z.

Personally, I’ve tried a range of treatments including LDN, diet, high dose vitamins, copaxone and mitox and am always interested in reading of what has helped other people.

However, the evangelicals who bang on and on about the ONLY cure (especially those who don’t actually have the condition) and pour derision on anyone else’s opinion can only drive people away from the forum and finding something - complementary or allopathic that genuinely helps them.

Perhaps this post should have been, "Can We Please Delete The Posts Of Persistent Spammers Who Leap On Other People’s Posts’…

Anyway stressful time at the moment and not doing fabulously - wishing you all a wonderful festive season and 2013 if I don’t peek my head out again this year .

18

My personal problem with exactly that is its never chocolate or cheese burgers.

19

If only …

20

Just for clarity, and in no way being confrontational - Yes that is what I suggested.

I thought it might actually be helpful or productive.

It appears I was wrong.