Why won’t the MS Society help people?

[scorpion]

http://www.facebook.com/note.php?note_i ... 668&ref=mf

Dr. Embry has an answer for you.

Mr. Embry, doctor of geology, has been railing against the MS Society for years because they they have not jumped on his supplement bandwagon so this letter should come as no surprise. Although I believe Dr. Embry has made a valiant effort to look into some alternative treatments for MS so far, besides the testimonials on his website, he has been seen as kind of, well... an outsider?

[cheerleader]

Maybe a bit of research is in order.
Here are some quotes from Dr. Embry's letter to Parliament regarding his charity, Direct-MS. It's not about supplements. It's not about an outsider mentality. Direct-MS is about funding research into the cause and potential treatments for MS. Dr. Embry considers all aspects worthy of research---not just those in the auto-immune/pharma paradigm.

I am the president and research director of Canada’s second largest multiple sclerosis charity, Direct- MS (www.direct-ms.org). Needless to say, we are much smaller than the Multiple Sclerosis Society of Canada (MSSOC) and we differ from that organization in a few significant ways.

First of all we are very science oriented and the majority of our officers/directors are practicing scientists. I am currently a senior research scientist with the federal government and have been practicing science for 42 years. Furthermore, our officers and directors are all affected by MS (a requirement) and this provides a strong, patient-centred approach to our goals and activities. In short, our board contrasts sharply with that of MSSOC which has very few scientists and few people affected by MS.

Direct-MS is entirely volunteer run and we pay no salaries. This allows us to keep our administration costs under 2% of our revenue and avoids a major conflict of interest that comes with charities such as MSSOC that have a very large, salaried staff. The development of an effective MS treatment will have a very major negative impact on MSSOC fund-raising activity and hence on staffing. If you question this, I invite you to check out the staff complement and annual revenue of the Scurvy Society
of Canada. This major conflict of interest is rarely discussed but is very real, although the extent of its influence on staff activities and policies is not known. Regardless, it is an important factor which always must be considered when any MSSOC position on a potential effective treatment for MS is offered.

Direct-MS also funds scientific research and funded an important dose-safety trial for vitamin D and MS ($200K). The scientific paper which describes the results of this trial was recently published in Neurology and was the subject of an editorial which noted the great importance of this work. We began funding CCSVI research in December, 2009 (University of Buffalo) and our most recent CCSVI research grant was made in April, 2010. We are currently in negotiations for helping to fund a treatment trial for CCSVI. This is especially important given MSSOC chose not to fund any treatment trials for CCSVI.

Here's the entire letter.
link

[1eye]

Getting us, caregivers, relatives and friends (to say nothing of governments, hospital boards, insurance companies, and medical associations) out of our toxic relationship with the MSS will not be as easy as it sounds.

We do need something like the CCSVI Alliance, but we need also to get ourselves and the others off of their mailing lists. That may involve a firm letter declaring your privacy rights. Fund-raising makes people feel good, but do not mistake this for helping pw'MS' or pwCCSVI. It doesn't.

Helping this group stay alive after they have proved unwilling to be of any help, only prolongs the pain.

[1eye]

Much as it may make some a bit peeved, the term Doctor is not reserve for Medicine, but denotes that a person is a teacher: It's all very complicated, but I would call Aston Embree a Doctor too.

From Wikipedia:

Doctor as a noun

Throughout much of the academic world, the term "doctor" refers to an individual who has earned a degree of Doctor of Philosophy, or Ph.D. (an abbreviation for the Latin Philosophiæ Doctor; or alternatively Doctor philosophiæ, D.Phil., meaning Teacher of Philosophy), or other research doctorate such as the Doctor of Science, or Sc.D. (an abbreviation of the Latin Scientiae Doctor). Beyond academia and in the classical professions, such as medicine and law, professional doctorates emerged such as the Doctor of Medicine M.D. (an abbreviation of the Latin Medicinæ Doctor), Doctor of Osteopathic Medicine D.O., Doctor of Dental Surgery (D.D.S.) or Doctor of Dental Medicine (D.M.D.), Doctor of Chiropractic (D.C.), Doctor of Engineering (D.Eng), Doctor of Pharmacy, (PharmD) Doctor of Physical Therapy (D.P.T.), and as a courtesy since the 14th century (though in the UK prohibited by section 49(1) of the Medical Act 1983 List of Privy Council Orders) Bachelor of Medicine and Surgery MBBS, MBChB, MB, BCh, etc. (an abbreviation of the Latin Medicinae Baccalaureus et Baccalaureus Chirurgiae), BHMS (Bachelor of Homeopathic Medicine and Surgery), and BAMS (Bachelor of Ayurvedic Medicine).

The Ph.D. was originally a degree granted by a university to learned individuals who had achieved the approval of their peers and who had demonstrated a long and productive career in the field of philosophy. The appellation of "Doctor" (from Latin: teacher) was usually awarded only when the individual was in middle age. It indicated a life dedicated to learning, to knowledge, and to the spread of knowledge.

The Ph.D. entered widespread use in the 19th century at the Friedrich Wilhelm University in Berlin as a degree to be granted to someone who had undertaken original research in the sciences or humanities. From there it spread to the United States, arriving at Yale University in 1861, and then to the United Kingdom in 1921. This displaced the existing Doctor of Philosophy degree in some Universities; for instance, the D.Phil. (higher doctorate in the faculty of philosophy) at the University of St Andrews was discontinued and replaced with the Ph.D. (research doctorate). However, some UK universities such as Oxford and Sussex (and, until recently, York) retain the D.Phil. appellation for their research degrees, as, until recently, did the University of Waikato in New Zealand.

In the US, the Doctor of Science, Sc.D., is an academic research degree that was first conferred in North America by Harvard University in 1872, and is relatively rarer than the Ph.D. However, the Sc.D. degree has long been awarded by leading institutions such as Harvard University, Johns Hopkins University, Massachusetts Institute of Technology, Boston University, Washington University in St. Louis, etc. At many of these universities, the academic requirements for the Ph.D. and Sc.D. are identical, and with identical doctoral academic regalia. In effort to standardize doctoral degree conferral at these large research institutions, the Ph.D. has replaced and grandfathered the Sc.D. in certain programs, while the Sc.D. is preserved in parallel to the Ph.D. as the highest conferred research doctorate.
[edit] Healthcare

Healthcare professions such as medicine, dentistry, podiatry, chiropractic medicine, optometry, pharmacy, clinical psychology, veterinary medicine, and physical therapy use the title doctor professionally.

In the United States, those training to become physicians complete a four-year undergraduate course of study, followed by a four-year graduate program in medicine to earn either the Doctor of Medicine (M.D.) degree or the Doctor of Osteopathic Medicine (D.O.) degree. Those training to become dentists also complete a four-year undergraduate course of study, followed by a four-year graduate program in dentistry to earn either the Doctor of Dental Surgery (D.D.S.) degree or Doctor of Dental Medicine (D.M.D.) degree. Those training to become physical therapists also complete a four-year undergraduate course of study, followed by a three-year graduate program in physical therapy to earn the Doctor of Physical Therapy (D.P.T.) degree. Pharmacists can receive a doctorate (PharmD) degree by completing 4 years of professional study. Some programs offer programs with 2 pre-professional years followed by 4 professional years, while others require a 4 year undergraduate/ bachelor's degree.

[1eye]

http://www.facebook.com/note.php?note_i ... 668&ref=mf

Dr. Embry has an answer for you.

Mr. Embry, doctor of geology, has been railing against the MS Society for years because they they have not jumped on his supplement bandwagon so this letter should come as no surprise. Although I believe Dr. Embry has made a valiant effort to look into some alternative treatments for MS so far, besides the testimonials on his website, he has been seen as kind of, well... an outsider?

You think that because of the Vitamin D? I though that was also Dr. OConnor's baby. Oh, I forgot. He is kind of, well... too.

[sbr487]

http://www.facebook.com/note.php?note_i ... 668&ref=mf

Dr. Embry has an answer for you.

Mr. Embry, doctor of geology, has been railing against the MS Society for years because they they have not jumped on his supplement bandwagon so this letter should come as no surprise. Although I believe Dr. Embry has made a valiant effort to look into some alternative treatments for MS so far, besides the testimonials on his website, he has been seen as kind of, well... an outsider?

You think that because of the Vitamin D? I though that was also Dr. OConnor's baby. Oh, I forgot. He is kind of, well... too.

[1eye]

Besides, Ge- comes before Neur- in the ology-bet anyway.

The problem is, the MS Society has aligned itself with one -ology, and refuses to help pwCCSVI at all, because they have been convinced by their chosen -ology that CCSVI doesn't exist, that Zamboni et. al. are liars,and that all of this will blow over.

Unfortunately for them, the examples of hundreds of other CCSVI sufferers getting well, getting their lives back, are too difficult to ignore. No, the treatment effect, if anything, has been underestimated by the casual observer. Plus, discounting re-stenosis, which may happen at any time until such time as you accept a permanent appliance of some kind, it is very long-lasting. There have been people whose track record is years. No adverse events at the far end of this treatment.

The MS Society will not live long, if it continues its denial. It may be embarrassing, but it will be good to see them go, and see the helpers find a more humanitarian group to serve.

[patientx]

Maybe a bit of research is in order.
Here are some quotes from Dr. Embry's letter to Parliament regarding his charity, Direct-MS. It's not about supplements. It's not about an outsider mentality. Direct-MS is about funding research into the cause and potential treatments for MS. Dr. Embry considers all aspects worthy of research---not just those in the auto-immune/pharma paradigm.

Or, you could go right to his website:
http://www.direct-ms.org/aboutus.htm

Our charity is committed to two main goals:

* To provide reliable, science-based information on the role that nutritional factors play in MS so as to allow those affected by MS to make an informed decision on whether or not to use dietary strategies for managing the disease and for preventing it in close relatives.
* To fund scientific research that properly tests the effectiveness of dietary strategies for slowing or halting MS progression and for preventing it in the first place.

http://www.direct-ms.org/index.html

I discovered abundant scientific evidence that indicates that various nutritional factors potentially play major roles in the onset and progression of MS. Strangely, this information was not being made available to persons with MS by doctors nor by established MS charities.

This website has been set up primarily to provide reliable, science-based information on the role that nutritional factors play in MS

[sbr487]

The MS Society will not live long, if it continues its denial. It may be embarrassing, but it will be good to see them go, and see the helpers find a more humanitarian group to serve.

Unfortunately, all the good work done by the grass root workers was undone in a matter of months by the top brass ... thats probably the sad part ...

[Cece]

I have to remember, when CCSVI is more proven, the MS Society may become a powerful ally instead of its current position.

I am angry that they played a role in the Canadian funding decision. I am angry that their call for no CCSVI treatment before randomized trials was one of the factors listed in Dr. Sclafani's irb rejection back in June. (With that second one, what do neurologists know of how surgical techniques need to be acquired? What makes them think that an IR can be perfect at this right out of the gate and not need some skill-building time such as Dr. Dake had last summer during his 60+ person pilot study!)

I hope the MS Society is able to change course as CCSVI becomes more understood. 'Toxic relationship' or a great big mistake on their part? It will take more than roses to get me back.

[Blaze]

It will take more than roses to get me back.

Cece: More than carnations, too!

[onesickrace]

i feel that you have to forget everything youve been taught growing up and walk out on a limb to see that theres an underlying reason to this and many other topics. trying to rationalize with many older people on this, it seems harder to grasp that their small town doctor from the 40s or 50s might have been wrong. and that they might have been paid to lie to you for decades. to think how far technology has come in this day and age and we've yet to "cure" anything in 30 years? theres no money in curing people. and that could very easily go on into the unnecessary topic of big business and world government. just my two cents. might seem like a stretch to some, but i have my reasons that i wont preach on here. best of luck to everyone...

[scorpion]

Besides, Ge- comes before Neur- in the ology-bet anyway.

The problem is, the MS Society has aligned itself with one -ology, and refuses to help pwCCSVI at all, because they have been convinced by their chosen -ology that CCSVI doesn't exist, that Zamboni et. al. are liars,and that all of this will blow over.

Unfortunately for them, the examples of hundreds of other CCSVI sufferers getting well, getting their lives back, are too difficult to ignore. No, the treatment effect, if anything, has been underestimated by the casual observer. Plus, discounting re-stenosis, which may happen at any time until such time as you accept a permanent appliance of some kind, it is very long-lasting. There have been people whose track record is years. No adverse events at the far end of this treatment.

The MS Society will not live long, if it continues its denial. It may be embarrassing, but it will be good to see them go, and see the helpers find a more humanitarian group to serve.

I must say your absolute knowledge regarding just about everything is quite amazing. I am truly blessed to have some of my more "egregious statements " quickly dismissed by you as niave instead of as the thoughtful comments I truly intend them to be. As you so state a doctor is not just someone who is a "medical person" it is also someone with their PHD in anything from geology to history. My concern with many geologists however is that they are beholden to interests of the The Geological Society of America and are therefore unwilling to think outside the "geological box". I think you accidentally referred to Mr. Embry as Aston. You forgot the H.

[thornyrose76]

The MS Society has never been of any help to me, they just ask for donations and informed me once when I was distressed about an issue regarding my wheelchair: "We don't pay for things." That's the MS Society

[scorpion]

The MS Society has never been of any help to me, they just ask for donations and informed me once when I was distressed about an issue regarding my wheelchair: "We don't pay for things." That's the MS Society

Would it make sense to start a MS Society haters section on thisisms? Just a thought.