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Wednesday, May 2, 2012 6:45 AM | Faith Volg link

It is unlike me to feel so critical. But it is due to my experiences of the past few years. I so wish to be open minded and not let my being personally effected over rule a sound perspective. I need to share some thoughts. 


There have been some past and current good and promising ways to approach possible treatment of MS. They are not available to patients and/or are being delayed for research for the #1 reason: lack of humanity to  patients with MS. There are many other causes, most involving profits, but the bottom line remains the long standing attitude toward MS patients being valued second to money, more directly, profits, from the medical and the MS communities. A few brief examples to explain: 


1) Decades of possible advances in MS research (immune system and vascular involvements), are still ignored, falsely reported and/or degraded.


2) Corrections and/or improvements (false EAE model and false data reporting) are still not given priority and impeding the quality of MS research.


3) Current approved treatments of less effective and/or more dangerous, even life threatening drugs are addressed with a common place acceptance and disregard to the resulting quality of life of MS patients.


4) And then our primary health care neurologists. They receive more negative from MS patients since the advent of CCSVI, but much of it is justified. MS patients want to be treated with honesty and respect, even if they have a mysterious disease with no cure. Sick patients are not a threat. They want, and deserve to feel better. As with most in life, there may be more than one correct way to feel better.


Patients and their families have very real disadvantages from a life with MS. The health care system and the medical community today, are adding to those disadvantages daily. Many patients feel more vulnerable and abandoned and/or abused from what was to be the source of trust with their health care. Many MS patients feel they must rely on learning how to take care of their own health care needs. Why do doctors discourage their patients from using the internet? Most patients are intelligent enough to care for themselves well and safely.