I recently spoke to a newbie MSer. She reached out to an international MS organization for help early in her disease process and was subsequently declined assistance by the group. I was very surprised to hear this, especially because it is a celebrated organization. I know this had to be devastating for her. Not just that she was rejected in her moment of need, but that the news came at an inopportune time. This was right after her diagnosis, which is probably the most vulnerable, depressing, and confusing time for a person living with Multiple Sclerosis. She vowed to never support that MS group again. I thought her reaction was a bit hasty but at that moment, while dealing with such a heavy blow, her emotions were probably all over the place.
This isn’t the first time I have heard such strong distain for MS organizations. I have communicated with a number of people who are totally against any and all MS associations. I’ve heard such things as:
-Not enough money is going to the cause.
-They are co-opted by big pharma.
-Lack of tangible patient services and research endeavors.
-Marketing and branding drive them.
-Too much money spent on administrative and fundraising costs.
-They spend more time empire building than helping people.
Are these real reasons to distrust all MS organizations or have they spawned from conspiracy theories and cynicism?
I have found more support locally than on the national level. I even received help paying for school after being diagnosed. I received my “life saving” cooling vest from a notable MS group. Other times when I was told I didn’t qualify for assistance I obtained referrals to other support opportunities. I guess I have been one of the lucky ones to receive help from a few different MS organizations so my skepticism is pretty low.
I need to know, am I being fooled?
Are harsh feelings toward MS organizations common? Are most people in support of, against, or indifferent towards MS groups?
[…] Photo Credit: https://mynewnormals.com/wheres-the-help/ […]
I think the question should be do you think the general public knows who they are and what they do.
FYI This is from the National MS Society website:
Last year alone the Society spent $164 million to provide a variety of direct services to people impacted by MS across the country and another $40 million to fund 325 research projects around the world.
Approximately 95% of the funds we have available to support our research and service programs come from private individuals who volunteer their time and effort to advance the Society’s mission to end MS. Less than 5% of Society income is received from the pharmaceutical industry and those funds are used independently to further programs for people living with MS.
Momentum magazine is read by more than 1 million people across the country – including more than 370,000 who advise they have MS – at no cost. It is advertising dollars that help make this possible. As with any respected news publication, editorial content is separate and distinct from advertising content.
Like many national organizations, we are structured in a way that our national resources are allocated to support both national and local chapter programs, so donor dollars can be best leveraged to serve the MS community. Therefore, if someone is receiving direct support from a local chapter, things are working as they should be.
where can I get this life saving cooling jacket? summer time is the worst season for me, then again, if the jacket will get me too cold, it may spur up more flare ups for me as I have spasms with cold weather. Does anyone know for a fact how it works no how cool it keeps u?
Angela, I got my mine through MSAA. Google cooling vest and see what you get. You can control how many cooling inserts you put in each pocket. Or better yet, just don’t fill the jacket up.
Really appreciated the post & the comments. The local chapter of NMSS (Delaware Valley) tries but a lot of their efforts don’t seem to work. Been trying to figure out a way to use their online community but it seems like a joke. Big Pharma does rule the roost as best as I can make out – very difficult to find discussions about alternative approaches to health & healing. Been an activist my whole life & NMSS approach to activism seems like Astroturf – all canned and preplanned. Still searching for conversation partners & places that are for real about dialog …
You’ve Found It!
Thank you Nicole if we stick together there’ll be no stoping us.
I feel the same way as most of your posters. I do not like any of the MS organizations in the US, mostly because their magazines are all full of drug ads. The International organization on the other hand only sends out a couple of magazines each year, and they are not full of drug ads, and they do contain really good information. I also agree with the first poster that there are many studies showing the benefits of marijuana for people with MS, but the NMSS doesn’t acknowledge this. Again, just proving to me that they are in big pharma’s pocket!
Hi Nicole,
This is an interesting article. Myself I find the NMSS not very usefull and think the top dogs make way to much money because to me it is supposed to be a charity not a wall street paycheck and don’t think the head dog has MS. I never see anything from them about awareness on TV or hear anything on the radio. I will not donate to them as all I ever see id neg. feedback and the only reason I donate to walkers is to make them feel better. I donate to the MSA as they gave me my cooling vest, but the bulk of my donations go to The Assistance Fund because they cover my Copays, while MS Lifelines dropped the ball and I had to go 6 weeks without meds, The Assistance Fund approved me in 2 days. The local chapter for MS is across the state and I always forget about them, I should look into them and see what they can offer, as I seem to come across people who have a lot of needs and I always try to find help for them. The other thing I don’t like is the NMSS dose’nt support MMJ when there is science that proves it helps, but that is letting the big Pharma’s influencing them on that and that is wrong
In fairness on the MJ front, I know many institutions getting fed funds can not reccomend a banned substance. This comes up with cancer treatments quite frequently, and believe it or not it frustrates them not to be able to say, “Use this, it’s a quarter the cost of the meds you are taking for pain or loss of appetite.” They risk the loss of funds which would undercut their ability to get any message out. It becomes a tradeoff they should not have to make, but…well talk to your congressman and senators about that one.
I also have a bad taste in my mouth with regards to LARGE organizations. When i go to websites all I see or read about is raising $$. i’m tired of raising $$…I want a cure! There is more $$ to be made in keeping people “sick” than there is in a cure so I guess a cure will not happen in my lifetime! I get more info from blogs like yours Nicole!
Thanks Kim!
My only experience with an MS group was with the ‘MS Foundation’ and it was a positive one. My insurance companies had changed and the new company did not want to cover my Avonex prescription. While my neurologist argued with them I ran out of injections and the foundation sent me two free of charge (referred by the pharmacy) so that I would not have a lapse in my treatment. I was very happy and relieved! They diffused a very stressful situation for me.
Donna, I have also worked with MS Foundation and found them to be very helpful.
It is impossible to be everything for everybody. Quite simply, MS and its treatments are expensive. The blunt simple truth is charitable giving is down since the recession. There was a peace on this on NPR around Christmas.
Because MS patients have such a variety of needs, it is often hard to get the benefits of pricing for large orders. Then there are all of the needs which are individual needs, like ramps being installed or vans being equipped for wheel chairs. These are difficult to provide, and my hat is off to those who make them possible. I just think many of these individual needs are better met locally in many cases where personal relationships and networks can negotiate better than a national organization.
On lobbying, raising awareness, and research the scale of a national organization is very useful. These are the parts of the international MS society I find useful. I just feel like the things I personally need (blessedly few at the moment) are better met with local help. I don’t tell family not to donate to the MS foundation or society. I just try to keep perspective on what needs I expect or hope they will be able to provide.
Like cancer foundations and other large organizations, I think the MS foundations have become less about providing tangible resources to MS patients and more about fundraising, advertising, and getting enough money to keep their jobs and increase their own pay and benefits (administrators and employees of the organizations) and grow in size. I would be interested to see financial reports to find out how much money they spend on administration, how much on advertising, how much on actual research and how much on actual assistance to real human beings who have MS. The ironic thing is that I am sure they honestly believe they are being altruistic and doing good.
I have not found MS organizations all that helpful, but I know others who have. I went to one meeting where everyone knew everyone, and they were continuing conversations from past meetings. They never even acknowledged me as new to the group and I never got to ask the questions that were heavy on my mind. Then another organization kept sending me e-mail, offering a “buddy” to talk to. I said yes, please. They connected me with someone who then told me she couldn’t be my “buddy” because I was on the wrong meds. I’ve given up on organizations.
I too got a bad taste in my mouth from the NMSS, when I was told that they could not help because I was not part of the continental United States… sent me booklets, written info and that was it.. at the time is was not enough.. You see I live on an island, and there were NO support groups here for MS. So, along with another mser, we started our own support group.. going strong now for a little over a year! Doing most things on a local level, and recently we were contacted by the NMSS.. said they had heard about me…. well you see that’s because I will talk to anyone and everyone about my MS… if they have time to listen.. but locally we still need more help.. starting with awareness, support and access to better healthcare.. it’s definitely a work in progress.. and I am not going to give up until the U.S. Virgin Islands is recognized as a place where MS exists and where we are not just statistics, but PEOPLE living with MS.
Hi, Nicole.
Interesting post! I’ll be interested to see the responses.
I’m employed by the Multiple Sclerosis Foundation, where I chair our Awareness Committee, and I wanted to offer a few tips for those who may have trouble finding assistance.
The key is not to let a denial get you down, or stop you from seeking further help. When you get a denial:
1. Keep calm. Remember that the agency isn’t saying they don’t believe you need help, just that they are unable to provide it at the time.
2. Ask the reason for the denial. If it’s simply that the budget has run out, ask if and when you can reapply.
3. Ask what other resources may be able to help fund your request, or whether there are other lower-cost options to deal with your issue. For example, you might have requested a renovation to add a ramp to your home, but that group or another organization might pay for a low-cost portable ramp that would suit.
4. Even if you can’t get funding for what you need at the moment, don’t let that discourage you from taking advantage of the other free programs and services that are available to you.
So, that’s my $0.02. I hope it’s helpful!
I agree with you Nicole in that I, too, have received more help on the local level rather than the national. Still, what a horrible situation for your friend. When I have contacted any National organizations, I have never been turned away, just not received what I really needed. I hope your friend will reach out to local groups but I can’t imagine what a shock it was for her to be treated badly by people created to help her.
Well, as far as I am concerned, all the things you listed as to why some people are against the MS society are true. ..in general. I am sure there are some branches that actually do help people, but the organization as a whole, is in my opinion – useless. I do not donate nor encourage friends and relatives to donate. Our money goes to the Myelin Repair foundation.
Good food for thought! I noticed you spoke of a life saving cooling vest! Are they bulky and weird? There are some things I really want to be able to do but I am scared to get out in the heat. Sending (((((hugs))))) your way!
Olivia
i got mine, plus other goodies, from MSAA, they were very nice and the vest comes with all the ice packets and it kinda looks like a duck hunting vest, not too stylish, but i do not care. it cools you to your core, and works for a long time. i think you can print an application online, i got mine several years ago, and i hope you get yours, just wanted to chat. leslie pollard the boonies of idaho
Olivia, It’s well worth the slight bulkiness. It looks like a hunting vest or something.
Olivia,
The cooling vests provided by the societies for free, are in fact bulky..But if you dont have the funds, the free ones can allow you to enjoy your summer, with short term outdoor events and not have the fear of walking the next day.I am extremely sensitive to the heat as many of us are, I myself am very finicky about what I wear, and so I looked into other cooling devices..the one I found is costly..Artic heat cooling vest heres the web site http://www.arcticheatusa.com/ No popsicle sticks..you soak it in water, wring it out and freeze it..it fits like a glove.. the cooling spots are adjusted to stay off your organs in your lower back..when frozed, you have 2-3 hours..if it thaws. you just dunk it in cool water and you get another hour after each dunk. They run between 150-200$ But I have found them also on craigs list an ebay for 12-30$ when you size it..you order 1 size smaller that you normally wear. if your a large order a medium. The zip from from and suppost to be VERY TIGHT..to hold the ice to you..You can ear a baggy shirt and souldn’t even know you have something on under it.. If you dont want to buy brand new..go to the site, it explains it in detail and how sizing works..Hope this helps. It may be costly, but its worth the $$ for the simple fact you can wear it wet over and over if its a long day. I hope this helps.
I don’t turn to the local chapter anymore. I tried to go to a meeting once soon after diagnosis, and I was a few minutes late, the door was locked and no one responded to my knocks. I called and asked for a referral to someone in town for yoga with experience with MS patients. They could not help me. I called them for a referral for a therapist to deal with the emotions, tthey could not help me. I went to the local MS center to be seen by the local MS specialist, he looked me overt very quickly, watched me walk, quietly left town and did not forward my co-pay to his office, but to his personal account. I am done with local MS organizations and by proxy the national organizations too. I do my own research and reading and do what I want. Its a shame that the local MS organizations are not more supportive/caring/informative, but they just aren’t. Where is all the money going?
Nicole I would like to thank you for the chance to say things that have been on my mind for years. I found out I had MS back in the 80’s. I felt so alone as I’m sure all my brother and sisters with MS have felt at times. I reached out to the MS organizations for help. Rather than being helpfull I found nothing but excuses and red tape. They would give tell me we don’t do that here we mostly raise money to fund research. I should say thank you to them because they taught me to depend on myself and fight this battle on myown. From them I learned to make do or do without. Any time they actually do something they make a big deal about it like look what we have done. I’m sure they do a certain amount of good but in my case not. Having friends like you make it easier to continue. Thank you for letting me vent. From what I’ve seen you just hit it out of the park again. Please don’t ever quit writing because you are loved and make life a little easier for many.
My local MS society was very helpful when I was first diagnosed but once I could manage on my own I have distanced myself from them because it is run by a group of volunteers who are not the most positive people I have encountered and I feel that they drag me down emotionally and that is not what I need. I do support them financially as they have been instrumental in getting my Betaferon being paid by my medical aid and not by my father.
I don’t think you are being fooled. If the organizations helps you then more power to you but it bothers me someone would be denied access to any MS help group. It is very harsh to turn someone away. I would be devastated and can’t imagine being snubbed like that. As if having MS isn’t hard enough. My sympathy goes out to her.