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National Multiple Sclerosis Society Does Not Care

By Ted Twietmeyer

I can be silent no longer about this. About 16 years ago we attended a lecture put on locally by NIH about MS. A research scientist spoke about the role of T cells with MS disease. You may recall hearing 20+ years ago that T cells are involved with AIDS disease; these cells are a key parts of the human immune system.

We attended a lecture by a scientist from NIH in Henrietta, NY in the early 2000s. She spoke about the complex role T cells play in MS disease. Interaction between T cells and immune system cells was graphically illustrated to be extremely complex.

At Q and A time (we sat in the front row) I asked her about the role mycoplasmas have in MS. I mentioned the 400 page+ NIH reports #6 and #9 dated 1969 which discusses how the government developed a mycoplasma which creates the auto-immune disease, and cited the work of Don Scott, a retired microbiologist with the University of Ottawa, Canada. Everyone looked at me with their mouths open. Her face turned beat red, she got nervous and claimed she knew nothing about it and quickly went on to the next person. She definitely knew the truth. There have been no more local lectures like this ever since.

Recently an article came out which describes Dr. Metcalfe's work [1]. She feels she is on to a connection T cells have with MS. But apparently this is old news no one remembers when it was publicly stated back in the early 2000s. This article refers to "2 to 3 million patients with MS." However, ten years ago the number of people with MS was estimated to be in excess of 10 million. In fact, almost everyone knows someone who has this disease.

Even if Dr. Metcalfe has a treatment, ultimately it must lead to a drug therapy protocol. After a drug has been developed lengthy trials with mice, primates and finally humans must take place. Finally, if Metcalfe's protocol is found effective enough at the human level (which many drugs fail to reach even after satisfactory results with primate tests) all that data must be presented to the FDA for final approval. A clinical prescription drug at your local drug store is at least 10 years into the future as of this writing. Since MS is a very long term disease for most patients, it can easily take 15+ years to track epidemiology of test patients and finally reach the market - unless it goes to market via fast-track.

We need to pray Dr. Metcalfe will not have a terrible accident or sudden serious disease combined with a "sweeping accidental lab fire" which stops all research. What happened to the research NIH did 15+ years ago? Why did that quietly go away?

A doctor once summed it up perfectly many years ago, "A patient cured is a customer lost." Every drug on the market is NEVER, ever called a cure for any disease or medical problem. The term "treatment" is always used instead. A broken arm is not cured, it is "treated." Students in med school have told me in person they were instructed to NEVER use the word "cure."

A MS CURE would quickly stop money flowing for MS Society executives and employees like June (not her real name) of the MS society. For several years June was a local National MS society representative who came out to monthly MS meetings in our area. One day June announced to our group last year that she was told "The society decided they could no longer afford to pay her to come out to our meetings" in 2016. To replace MS society employee June, the MS Society asked a local retired doctor (also with a serious medical condition I will not reveal here) to be the meeting leader and help with fundraising as an unpaid volunteer. He accepted.

This is not the end of the problem. Now the MS society has reached a new low to raise money: Our local group leader showed he was embarrassed when he was told to pass out placards and signs at monthly meetings to promote a BIKE RACE MARATHON for MS patients to participate in (?) to raise money for the society. I told the good doctor this was crazy. When he saw my face he quickly replied, "Yeah, I know it's kind of stupid" and put the advertising aside. What an insult to MS patients.

So why is this bike marathon an insult to patients? Because all MS public fund-raising events ask BOTH the healthy public and MS patients to participate. So how does a disabled MS patient confined to a wheelchair mount a bicycle and then pedal 10Km?

I told the good doctor at that point, "It is disgusting and way out of line for the MS society to put out an ad for something like this. What an insult to MS patients." He agreed.

Clearly it comes down to money. MS society is now showing their true colors by stopping their PAID representatives from attending local meetings - despite the National MS Society showing an INCREASE IN REVENUE AND ASSETS each year.

In 2013 their financial statement showed the National MS Society net worth at $87 MILLION, and increased to $104 MILLION in 2014. [2]

It continued to grow: The MS society is now rated as a HEALTHY CHARITY with a net worth in excess of $113 MILLION as of December 2016. [3] Yet they boldly claim they can no longer afford to pay their representative to attend a local meeting? Did this suspension happen across the USA, or is it just a local greed issue?

National MS society is clearly showing they do not care about MS patients anymore, and only use them to raise money for their own hidden purposes.
Oh, what a surprise for a charity to be this way...

Ted Twietmeyer