New MS fight
By Allison Wall
Posted 2 hours ago
The MS Society needs to take a louder advocacy role in regards to liberation treatments, says an official with the Alberta division.
During the past year, the treatment put forward by the Italian doctor, Paolo Zamboni has created controversy across the country. Tuesday evening, the local and Alberta division of the MS Society of Canada held a town hall meeting to give a voice to Lloydminster residents affected by MS.
"I think that's part of the problem is we haven't spoken loud enough so I think if we express more strongly the viewpoints of people living with the disease hopefully government will listen," said Darrel Gregory, director of communications for the MS Society of Canada. "I think we've been far too quiet up till now."
Gregory said in some cases people were angry the MS Society wasn't behind the treatments.
"I think part of it is because we've been very cautious in our approach to this because initially the research community told us to slow down, but then as more people had the treatment and experienced the benefits from it we thought well maybe there is something to this," he said. "Now the proof is in the pudding and people are seeing results, so let's try and speed up the process if we can."
In the meeting, Lloydminster residents affected by MS voiced frustration, saying the MS Society needs to have a stronger advocacy role for the liberation treatments with the government. As well, they said there needs to be more open dialogue between MS doctors and neurologists with their patients.
"In some cases we've heard that some of the doctors aren't very open about it," said Gregory. "Patients just want to talk about it, right? So let's have a conversation with your patient if you are a doctor.
"And also, maybe there is a stronger advocacy role for us to talk to government. To try to get this thing going faster."
Local resident Sheldon McPherson was formally diagnosed with MS on March 31, 2007 and said his liberation treatment in Albany, New York on Aug. 4, 2010, provided immediate results for constant chronic fatigue, balance issues and heat intolerance.
"My wife and I had actually been down in New York when it was plus 40 and really humid and right as soon as we went outside it was like o'clock … at night but it was still plus 40 and hot, and I noticed the heat intolerance I'd had two hours before was totally gone," he said. "Amazing."
But McPherson questioned why Canadian residents needed to travel to countries around the world to receive the treatment.
"(It's) very frustrating," he said. "First and foremost I had to leave the country for this non-invasive, non-risky procedure, which is not an actual surgery, and as far as getting back out to the workforce I definitely couldn't have thought about that before the treatment."
The meeting in Lloydminster was the fourth in a string of town hall meetings across Alberta.
"In Lloydminster, people … are more upset than some of the communities we've been in," said Gregory. "I think probably more people have had the treatment here, and have seen some positive results, and so they have a higher level of frustration because they know some of the positive results that can come from it."
Gregory said he would submit reactions and opinions to the Alberta government and national chapter of the MS Society of Canada.
Nicky Walker-Dufault, executive and development director with the MS Society, Lloydminster Chapter, said the meeting was an important communication tool for the high number of local residents who had the treatment, and with many cases of MS in Lloydminster the city's unique status provides a catalyst for conversation.
"Canada is world-renowned with the highest incidents of MS and Lloydminster seems to be a hotspot," she said. "We are also lucky though because the membership that we do have here are very vocal and so they do … come out and say positive things for CCSVI, negative things for CCSVI, and it's good because we become sort of a catalyst for a conversation that needs to happen."
The MS Societies of U.S. and Canada have committed $2.4 million to understand CCSVI treatments and its link to MS. One of our Canadian CCSVI research projects is at the University of Calgary with Dr. Costello.
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