"Big Pharma Behaving Badly" and why I dislike the NMSS

Big Pharma Behaving Badly (And Making Me Want to Vomit)

Shared off Wheelchair Kamikaze.   Funny that my first neuro put me on Rebif right away, and that I reacted to it poorly and had more lesions. I don't trust any of them. Makes you wonder if CCSVI tests and treatment aren't covered under insurance b/c the insurance companies are paid off by the drug companies!  Now, I'm not a total conspiracy freak, but you have to wonder how much of this goes on when things like this break out.

Always and forever will hate the Nat'l MS Society's slogan 'MS stops people from moving.'!  And if my ms suddenly paralyzes me... I am blaming them for putting that idea into my head.  DEPRESSION is what CAN stop people from moving, and not work to combat their ms!!

I just shared my grandmother's story of being 'bed ridden, blind and incontinent', as my dad explains it,  back in the 60's.  She  (mainly her sister) found a regimen that helped her recover from her ms - before drugs that 'modified the disease', and I knew her as a grandma who, like many others, used a cane and sometimes a walker.  Recover, not get 'paralized' and die, RECOVER - before all the new 'disease modifying' treatments.  Her story can be found on scribd.com.

I, personally, can tell a major difference in my abilities from day to day, depending on what state of mind I'm in.  I just had a baby, and was pretty much confined to a chair during the last trimester and the first few months after he was born.  I started physical therapy and am already, 6 months later, back to where I was before the pregnancy, mobility wise... and am even getting to where I can move him around using a stroller and not only the chair - AND, I was discharged today and declared 'no longer home bound'.  MS CAN be combated if you learn and do what your body needs!  I know that when my job fired me for asking for accommodations to be able to stay healthy and productive working their BS schedule, depression nearly got the better of me.  Aside from telling patients they're 'doomed', the slogan feeds into the already negative misconceptions of MS that helped give reason for my job to dismiss me.  Though, I should add that I have thought of the possibility that the MS diagnosis was just a good reason for them to get rid of me, and that they didn't like having a free thinker who might challenge the status quo, or at least question it.

Having MS does NOT mean your body WILL stop moving, as the NMSS likes to claim.  I called and complained directly to the organization, and was told that 'MS stops people from moving.' just 'fits' with their 'Join the movement' campaign.  My PT who's been visiting me out here usually deals with the geriatric, rather than MS, but she has seen some MS patients over the years, and I went off on her today about the NMSS after she discharged me, while I printed Grandma's letter off for her, and she agrees that telling people their disease will immobilize them will only cause depression and most likely take away all reason to strive to improve. 

Off the NMSS home page:

The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.
We help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

• We are moving research forward by relentlessly pursuing prevention, treatment and cure.
• We are moving to reach out and respond to individuals, families and communities living with multiple sclerosis.
• We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence.
• We are moving to mobilize the millions of people who want to do something about MS now.

How the heck does the society 'make sure MS doesn't stop people from moving'?!  All I've seen from them, is that they educate.  Which they do do well, but I have to wonder also if what they put out isn't just support of the 'Big Pharma' companies' prerogative.  Back when I was first diagnosed, I knew of Grandma's recovery and was(am) on a yahoo group of people with MS (MSers) who are very anti conventional meds and swear by diet and supplements.  I called the NMSS, asking about if there was any specific research into any of this, and if there wasn't, if they would find someone and fund them in finding scientific evidence of legitimate nutritional treatments for MS.  I was practically laughed at and told it'd 'never happen, there's no money in that line of thinking.'

And THAT is why I get a little 'prickly' when the Nat'l MS Society is mentioned.