Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 but The MS Society no more wants to find a cure for MS than the AMA or the ADA do. Dr Kingsley, who Ajay sees, is utterly convinced of this. He has spoken to people who head the MS society in the UK and is certain that they have no interesting in finding a cure for MS and, as you say, it's not in their interest to find a cure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 Re: MS Society Wow, Mark....I didn't know that. That really figures. I recently went to the MS Society's website and found that they had a list of dozens and dozens of drugs to treat symptoms of MS. It was deplorable. So many MS victims still trust the system and will be victimized by it all their lives. It just stinks! Betsy Mark wrote: Also, of course, the MS Society now have a new Chief Executive who was previously high up in Glaxo Kline, one of the biggets drug companies in the world. It is certainly not in Glaxo's interests for people with MS to be cured by any means other than their drugs, and then the cure would have to be dependent on repeated consumption of those drugs. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Oh Man, what have I got myself into. I just came over to this group to see if someone could point me to someone who can do bee sting therapy. I read your post and it just floored me that another disease had as rough a politics as Lyme. Over there you have to know a secret password and handshake to get a name of a doctor that treats lyme. There is also a tremendous amount of infighting between the doctors and PARANOIA because of action being taken against some doctors for prescribing years of IV ABX therapy to patients and other doctors say No, if 30 days doesn't work then there is nothing else that can be done for you. All any of us want to do is get back to a half way normal life and it shouldn't be at the expense of them taking the little bit of self esteem we have left(which isn't much after hearing that we are just getting old from countless doctors) and every last penny we have left in the bank after our insurance drops us. Yes sir, we can make you better, all you have to do is take 100s of thousands of dollars of medicine for the rest of your life! It doesn't matter that it doesn't work. Give us your money anyway. just my humble opinion Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 definitely agree wih this statement, Also recently jOINED THE M.S.Research Trust, THINKING THAT THAY WOULD BE A BIT MORE OPEN-MINDED this year, they sent me an 'in your face' calendar, with eevery page blaring out facts about M.S. SEEMS Ato me that IA KNOW that I HAVE m.s, AND there is not much gooddone by having a calendar shouting it at you from the wall I gave ine to a local group >From: Oliviavdw@... >Reply-To: mscured >To: mscured >Subject: Re: MS Society >Date: Sun, 17 Feb 2002 04:29:01 EST > >In a message dated 16/02/2002 13:12:56 Pacific Standard Time, >westoo@... writes: > > > > but The MS Society no more wants to find a cure for MS than the AMA or >the > > ADA do. > >Dr Kingsley, who Ajay sees, is utterly convinced of this. He has spoken to >people who head the MS society in the UK and is certain that they have no >interesting in finding a cure for MS and, as you say, it's not in their >interest to find a cure. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 I am not flaming you and I realise you probably didn't mean it this way, but I don't think anybody in this whole wide worlds thinks that being confined to a wheel chair is an easy option. Plus by the time a person is at the point of being in a wheelchair, they have alot more to worry about than 3 items on a list. Same here......I'm not flaming you, but I DO know several people personally who thought a wheelchair was an easy option. I met one of them before I was diagnosed with MS. She worked where I used to work. One time, while we were alone at 'break', she told me she regretted every having gone into a wheelchair as soon as she did. She said she felt that, if she'd kept at it and tried some other things, it would have been much better for her to keep her strength longer. This may not have had anything to do with it, but a couple of years later she had to have one leg amputated. She got a sore on it that wouldn't go away, and it just kept getting worse and worse. What that woman said to me really made an impression. At the time she told me that, I was about 90% sure I had MS too, but no one at work knew yet. (I worked 5 years before I told anyone.) Elaine, I was just about to thank you for mentioning the wheelchair option. I wish more people in wheelchairs would make those things clear. Too many people believe that MS automatically means you will end up in a wheelchair, even though only about 40% of us do. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Dear Malcolm, Thanks for your nput about the MSTRUST. IN CASE PEOPLE reading this think that Wheelchairs are an easy option, here is why they are not 1.)YOU BECOME 'CHAIR-SHAPED' 2.) YOUR HEART ETC.BECOMES SLUGGISH and you may have to start taking Water tabs,as water collects in your tissues, legs, lungs etc, after a while. 3.) PRESSURE SORES may develop if you are not moving around enough. Elaine (FORMER NURSE} > >Reply-To: mscured >To: <mscured > >CC: " Eleine " >Subject: MS Society >Date: Thu, 21 Feb 2002 12:09:33 -0000 > >Hello Elaine, > >I'm sorry that you found the Trust's Calendar upsetting. I've forwarded >your posting to them, so I'm not intending to pre-empt their response, but >I'd like to let you know how it is for me. > >In 1974, when I was diagnosed, I was told by the local secretary of the MS >Society " To do nothing, just get into a wheelchair and wait. " > >I won't tell you what words were my response, nor how I was shocked to see >that they were not making an effort to fiend a treatment or cure. > >But I did work out a " cure " for myself, and then joined in with starting a >research organisation. This certainly got things going, and son became >overstretched. However one of the outcomes of this small start all the MS >Therapy Centres in the UK (nothing to do with the MS Society) where you can >receive various treatments including physiotherapy, oxygen treatment, >dietary advice, counselling, etc., etc. > >Another outcome is the " New Pathways " magazine, that is highly valued as >being a positive publication by many sufferers. > >The third outcome is the MS Research Trust (whose calendar upset you). >They actually help fund genuine research at the Institute of Neurology, and >at South Bank University, and King's College, run courses for >professionals involved with MS, and publish such booklets as " My Dad's Got >MS " , " My Mum's Got MS " , " MS Tips " , " What It Means For Me " and " Living With >Spasticity " . > >So you see that the MS Trust are part of the worthwhile self-help outfits >that were spawned as a reaction to the lack of direction that seemed to be >being taken by the MS Society. > >Cheers, > >Malcolm. > >m.birkenshaw@... > >www.curezone.com/DangerouslyHealthy for free download of 43 chapter >autobiography. > >============================================================================= > > >Subject: Re: MS Society > > >definitely agree wih this statement, Also recently jOINED THE M.S.Research >Trust, THINKING THAT THAY WOULD BE A BIT MORE OPEN-MINDED >this year, they sent me an 'in your face' calendar, with eevery page >blaring >out facts about M.S. > SEEMS Ato me that IA KNOW that I HAVE m.s, AND there is not much >gooddone by having a calendar shouting it at you from the wall > I gave ine to a local group > > >From: Oliviavdw@... > > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 I am not flaming you and I realise you probably didn't mean it this way, but I don't think anybody in this whole wide worlds thinks that being confined to a wheel chair is an easy option. Plus by the time a person is at the point of being in a wheelchair, they have alot more to worry about than 3 items on a list. > Dear Malcolm, > Thanks for your nput about the MSTRUST. > IN CASE PEOPLE reading this think that Wheelchairs are an easy > option, here is why they are not > 1.)YOU BECOME 'CHAIR-SHAPED' > 2.) YOUR HEART ETC.BECOMES SLUGGISH and you may have to start > taking Water tabs,as water collects in your tissues, legs, lungs > etc, after a while. > 3.) PRESSURE SORES may develop if you are not moving around enough. > Elaine > (FORMER NURSE} > > > >From: " Malcolm Birkenshaw " <m.birkenshaw@a...> > >Reply-To: mscured@y... > >To: <mscured@y...> > >CC: " Eleine " <elaineannkelly@h...>, <Oliviavdw@a...> > >Subject: MS Society > >Date: Thu, 21 Feb 2002 12:09:33 -0000 > > > >Hello Elaine, > > > >I'm sorry that you found the Trust's Calendar upsetting. I've forwarded > >your posting to them, so I'm not intending to pre-empt their response, but > >I'd like to let you know how it is for me. > > > >In 1974, when I was diagnosed, I was told by the local secretary of the MS > >Society " To do nothing, just get into a wheelchair and wait. " > > > >I won't tell you what words were my response, nor how I was shocked to see > >that they were not making an effort to fiend a treatment or cure. > > > >But I did work out a " cure " for myself, and then joined in with starting a > >research organisation. This certainly got things going, and son became > >overstretched. However one of the outcomes of this small start all the MS > >Therapy Centres in the UK (nothing to do with the MS Society) where you can > >receive various treatments including physiotherapy, oxygen treatment, > >dietary advice, counselling, etc., etc. > > > >Another outcome is the " New Pathways " magazine, that is highly valued as > >being a positive publication by many sufferers. > > > >The third outcome is the MS Research Trust (whose calendar upset you). > >They actually help fund genuine research at the Institute of Neurology, and > >at South Bank University, and King's College, run courses for > >professionals involved with MS, and publish such booklets as " My Dad's Got > >MS " , " My Mum's Got MS " , " MS Tips " , " What It Means For Me " and " Living With > >Spasticity " . > > > >So you see that the MS Trust are part of the worthwhile self-help outfits > >that were spawned as a reaction to the lack of direction that seemed to be > >being taken by the MS Society. > > > >Cheers, > > > >Malcolm. > > > >m.birkenshaw@a... > > > >www.curezone.com/DangerouslyHealthy for free download of 43 chapter > >autobiography. > > > >===================================================================== ======== > > > > From: " Elaine " <elaineannkelly@h...> > >Subject: Re: MS Society > > > > > >definitely agree wih this statement, Also recently jOINED THE M.S.Research > >Trust, THINKING THAT THAY WOULD BE A BIT MORE OPEN-MINDED > >this year, they sent me an 'in your face' calendar, with eevery page > >blaring > >out facts about M.S. > > SEEMS Ato me that IA KNOW that I HAVE m.s, AND there is not much > >gooddone by having a calendar shouting it at you from the wall > > I gave ine to a local group > > > > >From: Oliviavdw@a... > > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 the thing is , after being confined to bed for 3 mponths, while they struggled discover ewhat my problem was, my legs finally gave up,and for some reason I never really managed to get them going, the disadvantages of having to rely on a wheelchair, are from my own experience. Elaine > >Reply-To: mscured >To: mscured >Subject: Re: MS Society >Date: Sat, 23 Feb 2002 17:06:06 -0000 > >I am not flaming you and I realise you probably didn't mean it this >way, but I don't think anybody in this whole wide worlds thinks that >being confined to a wheel chair is an easy option. Plus by the time a >person is at the point of being in a wheelchair, they have alot more >to worry about than 3 items on a list. > > > > Dear Malcolm, > > Thanks for your nput about the MSTRUST. > > IN CASE PEOPLE reading this think that Wheelchairs are an easy > > option, here is why they are not > > 1.)YOU BECOME 'CHAIR-SHAPED' > > 2.) YOUR HEART ETC.BECOMES SLUGGISH and you may have to start > > taking Water tabs,as water collects in your tissues, legs, >lungs > > etc, after a while. > > 3.) PRESSURE SORES may develop if you are not moving around >enough. > > Elaine > > (FORMER NURSE} > > > > > > >From: " Malcolm Birkenshaw " <m.birkenshaw@a...> > > >Reply-To: mscured@y... > > >To: <mscured@y...> > > >CC: " Eleine " <elaineannkelly@h...>, <Oliviavdw@a...> > > >Subject: MS Society > > >Date: Thu, 21 Feb 2002 12:09:33 -0000 > > > > > >Hello Elaine, > > > > > >I'm sorry that you found the Trust's Calendar upsetting. I've >forwarded > > >your posting to them, so I'm not intending to pre-empt their >response, but > > >I'd like to let you know how it is for me. > > > > > >In 1974, when I was diagnosed, I was told by the local secretary >of the MS > > >Society " To do nothing, just get into a wheelchair and wait. " > > > > > >I won't tell you what words were my response, nor how I was >shocked to see > > >that they were not making an effort to fiend a treatment or cure. > > > > > >But I did work out a " cure " for myself, and then joined in with >starting a > > >research organisation. This certainly got things going, and son >became > > >overstretched. However one of the outcomes of this small start all >the MS > > >Therapy Centres in the UK (nothing to do with the MS Society) >where you can > > >receive various treatments including physiotherapy, oxygen >treatment, > > >dietary advice, counselling, etc., etc. > > > > > >Another outcome is the " New Pathways " magazine, that is highly >valued as > > >being a positive publication by many sufferers. > > > > > >The third outcome is the MS Research Trust (whose calendar upset >you). > > >They actually help fund genuine research at the Institute of >Neurology, and > > >at South Bank University, and King's College, run courses for > > >professionals involved with MS, and publish such booklets as " My >Dad's Got > > >MS " , " My Mum's Got MS " , " MS Tips " , " What It Means For Me " >and " Living With > > >Spasticity " . > > > > > >So you see that the MS Trust are part of the worthwhile self-help >outfits > > >that were spawned as a reaction to the lack of direction that >seemed to be > > >being taken by the MS Society. > > > > > >Cheers, > > > > > >Malcolm. > > > > > >m.birkenshaw@a... > > > > > >www.curezone.com/DangerouslyHealthy for free download of 43 >chapter > > >autobiography. > > > > > > >===================================================================== >======== > > > > > > From: " Elaine " <elaineannkelly@h...> > > >Subject: Re: MS Society > > > > > > > > >definitely agree wih this statement, Also recently jOINED THE >M.S.Research > > >Trust, THINKING THAT THAY WOULD BE A BIT MORE OPEN-MINDED > > >this year, they sent me an 'in your face' calendar, with eevery >page > > >blaring > > >out facts about M.S. > > > SEEMS Ato me that IA KNOW that I HAVE m.s, AND there is not >much > > >gooddone by having a calendar shouting it at you from the wall > > > I gave ine to a local group > > > > > > >From: Oliviavdw@a... > > > > > > > > > > > > _________________________________________________________________ > > Join the world's largest e-mail service with MSN Hotmail. > > http://www.hotmail.com > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
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