I recently joined the forum, not exactly the most smooth introduction but nevertheless I’m here.
There have been a few threads recently posted on which I would liked to have commented, however hostility to anything I post as a result of the first thread I was involved in has made me hold back from posting anything at all. Even comments or advice completely unrelated to the first thread in which I was involved would instantly send a thread into meltdown, which is a shame.
There were a few posters that have expressed an interest in discussions about alternatives to mainstream treatment. There are many alternatives, they aren’t going to dissapear so openly talking about them would seem the obvious thing to do rather than suppression and alienating members through fear of being pilloried.
A non exhaustive list of alternatives include:-
CCSVI
Low Dose Naltrexone (LDN)
Diet related
Stem Cells
Gene Therapy
Natural Approach
Statins
Sativex
Chiropractic/Osteopathic Treatment
TMJ or skeletal misalignment treatment
etc etc
How about opening a new section of the forum devoted to alternatives where people are free to discuss these products/treatments/therapies/lifstyle choices without treading on the toes of those who susbscribe to currently prescribed treatments available.
The MS Society could easliy put a disclaimer on the forum area marking it as non proven, non promoted, nothing to do with us legal speak so it’s backside is covered.
How about it Moderators? How about a sub forum devoted to discussing all the alternatives available if people would like to do so?
The MS Society,ie the management of this bored cannot be seen to even be giving the slightest support to ANYTHING which is not supported by the likes of NICE and the mainstream thinking of what can be done to treat MS.There is no reason whatsoever why anything cannot be discussed on here if it is done courteously, in a none inflamitory way and doesn’t breech the T+Cs.[filtered word] good hey.
There have been lots of thoughts on establishing new and different sections of the forum over the years.When the beloved old Boards met their demise various sections and facilities were lost as new facilities were inaugerated.I reckon this is as it will be until 20–,when there is a re-vamp.I did push for a Ginger Haired Gob-hite section,but I get away with all manner of tripe by thinking about you the reader and your possible sensibilities.
Education about MS is one of the key elements of this hallowed ground and it is through transfer of information that any of us learn about our ‘Mysterious Symptoms’.We each have our own version, and it is a matter of trial and error to find things which help.My attitude is, “Everything is in play”,and 11 years in I still learn new stuff all the time.I am an untalented brat compared to some of the peeps on here who have been club members for yonks longer than me.
Accupuncture and reflexology are two of the things I have tried and Hypnosis for pain management is something I want to try.I now need a lie down in a darkened room to let my neuron recover.
Laters, Wb
ps A few topics which have caused ‘civil war’ over the years include.LDN,CCSVI,HBOT, religion,politics and the age old conundrum,Strictly or X Factor.
I think you have a very good idea. Mostly what unproven means is not clinically trialed to licencing standards. It definitely does not mean something does not work.
The drug industry have been caught not realising all the data on clinical trials on more than one occasion so that devalues the overall system anyway. Also licenced drugs are becoming so expensive that they are rationed so that may with a diagnosis of MS are not offered them anyway.
A separate section to discuss alternatives freely is in my view a very good idea.
It was X Factor until it went off the boil two years ago IMHO so now it is strictly (60% Rule of the TV)
I do believe there should be an ‘altenative’ forum for things which ‘may’ work or help with the symptoms/treatments especially if the normal routes of treatment become too expensive/not available/not working. As the saying goes, knowledge is power if used correctly.
This Board is called Everyday Living because it covers everything we people with MS encounter in the course of our every day living and that includes alternative therapies. If you do a search, EJC, you will see that the topics you have suggested are often discussed and debated.
I don’t think anyone has a problem with alternative therapies being discussed. It is the manner in which that discussion is sometimes introduced and pursued that can get up people’s noses. For example if a poster is abusive and reduces another Board Member to tears, people take offence. Especially when the abusive member then refuses to apologise.
But polite, friendly and even vigorous debate is often undertaken on this Board and a lot of information is exchanged in this way. Just stick to the T&Cs and the unwritten rules of common courtesy and people shouldn’t have a problem.
Contrary to some people’s opinion the MS Society doesn’t censor content. But they will close down a thread when the Terms and Conditions are breached. Do make sure you familiarise yourself with them.
Carole I’d omitted HBOT from my list which is daft as it’s something my wife used to great effect, unfortunately for us our nearest chamber was a 100 mile round trip which made it impractical long term. Short term there were obvious benefits.
Interestingly though Belinda, the thread is still on the forum, so at least considered interesting and non offensive enough to be allowed to remain. I joined that thread as the original poster had been reduced to tears through unpleasant and aggressive responses from active and established forum members. I guess there’s two sides to every story and the mods at least appear to have thought so too. As far as I can see, no posts were removed or members sanctioned.
Now are you going to follow me around with comments about that locked thread whenever I post on here or are we going to leave it where it is and let people make up their own mind?
This is what I’m trying to achieve, I don’t come here to upset the apple cart, but I would like to throw ideas out there and discuss the alternatives.
Creating a seperate section removes the association of what’s being posted. What do I mean?
Well I’ve started this thread in the “everyday living” section, simply because I couldn’t figure out a better place to start it, but it’s hardly relevant to my particular conversation.
So more established members may simply not want these subjects discussed in this section, I figured it may be better to simply have it’s own area clearly marked as “Alternative or currently not accepted as mainstream” then people are aware clearly before they enter that what they are reading is exactly that. The MS Society could even put a little pop up box that has to be clicked on entry as an acceptance of the understanding of the same. Alternative and not currently accepted as mainstream.
This removes confrontation from the existing poster group who believe strongly int he drug/medicinal treatment that is currently available and don’t wish to be associated with alternatives.
I was pleasant and polite in my reply to you. Why start off by being antagonistic straight away? You raised the issue about your first foray onto these Boards, not I. I was simply responding to you.
If this is going to be your ongoing attitude every time you come on these Boards, trust me I will definitely leave it where it is…
Exactly, but the MS Society offer a forum on which anything can be discussed, the fact the forum is run and operated by the MS Society doesn’t mean they condone or support any information at all that is posted here. They have that made clear in their T&C’s also. What I’m trying to do is create somewhere on here for these conversations to take place that will go to reducing confrontations.
Sonce the thread in questions I’ve had more than a few messages from people that have wanted to discuss these things, but don’t post on here for fear of flaming. Which I’m sure you’ll agree is rather sad.
I like the Ginger Haired Gob*hite idea, that works for me.
EJC you are able to post about any of the things you mentioned in your post. They have been discussed regularly on this forum.
You have to remember that there are people on here that will challenge anything that is ‘not scientifically proven’ as they are scientists and doctors.
Perhaps saying ‘this is my opinion’ or 'what do you think about this? or have you tried?
New members on here are coming for information. The ‘educated’ on here do not want them to be misinformed about ‘unproven treatments’ as it could have a life changing impact if they take the wrong route.
You will have to expect people constantly challenging your ideas about unproven treatments.
Alternative treatments are often discussed on these boards and I have tried a fair few on your list, so not sure what you wish to save us from. If you post anecdotal information on a public forum then you must expect those views to be challenged, which is only healthy after all.
If you intend to stick around it’s useful to remember that people respond best when treated with respect and causing distress to those affected by MS is simply not going to be tolerated.
How would having a separate forum for alternative therapies not tread on some people’s toes? How would statements claiming such things as “demyelination is a myth”, MS lesions are really calcification, there is no real nerve damage in MS, and of course, various outrageous statements about DMDs, ever not step on some people’s toes? There is no reason to have a separate forum. We discuss such matters on this forum and always have done. Having a separate forum would simply move these discussions elsewhere; it would not change the participants, or the level of scientific scrutiny. There are plenty of other websites where people can discuss alternative therapies without any such scientific scrutiny. If you don’t like being challenged, perhaps you should stick to them?
