MS Charities, Helping Those in Need, or Helping Themselves?
I've replied to 100's of emails from furious readers of their anger at MS Charitable Organizations. There is really not much I can tell them, I feel a little let down myself.
Most of the CCSVI campaigning has been done by those who feel their lives are directly affected (Generally MS patients & Families) by CCSVI.
Many people with MS note that their symptoms seem to worsen during times of stress.
The lack of attention given to CCSVI, by several charitable organizations has multiplied the stress levels, in those they claim to be protecting.
I understand some felt pressurized enough into offering CCSVI some exposure. It's not enough, I know that, you know that, and so do they.
CCSVI is not an MS illness.CCSVI is not something the MS Organizations should be arguing over. Whether it's relates to MS or not, is irrelevant for now.
Patients have been found with high levels of iron in a dangerous area of the brain, evidence supports that this abnormality is widespread.
If you are working on behalf of people with MS, why are you not looking to get every MS patient screened for CCSVI? Look at the areas affected, the basal ganglia and thalamus. Who are you protecting by ignoring this?
CCSVI is not something the MS Organizations should be arguing over. Whether it's relates to MS or not, is irrelevant for now. Patients have been found with high levels of iron in a dangerous area of the brain, evidence supports that this abnormality is widespread.
It is Essential for all MS Patients to have access to CCSVI Screening, on a Global Scale
The information should be made readily available.
Today, I received an e-mail, with a link to the Multiple Sclerosis World Map
This information is shocking and MS appears to be concentrated on specific areas.
The drug approach hasn't progressed far, although the companies behind the MS drugs appear to be prospering, and have plans for future expansion.
I am sure there are MS drugs that have a positive effects on patients. I also know that many MS Charitable organizations are heavily involved in the promotion of such drugs. Considering the track record of ineffective drugs, don't you not think it's time you start taking CCSVI seriously?
Patients need access to CCSVI Screening Now!
This is a non invasive procedure.
If you intent to spend our donation money wisely, look at it from a financial point of view, one successful CCSVI treatment would save thousands of dollars in medications. This person will have a second chance at life.
Are you prepared to let the health of your audience degenerate while you continue your quests for more expensive, longer lasting alternative?
A lot of this is our money you are spending. Many have turned against you because they no longer believe you still value, health over profit.
Most charities are set up with a focus on helping those who need it. It appears many have lost sight of who really matters in all this, those silently battling off their MS.
Actions Speak Louder Than Words!
It's a start but not good enough
Now, this is where it gets interesting..
http://whois.net/whois/ccsvi.ca
Registration Date: 2009/11/22
Registrant: Multiple Sclerosis Society of Canada (NFP)
Postal address: Multiple Sclerosis Society of Canada
700-175 Bloor Street East
Toronto ON M4W 3R8 Canada
Here is the current content, 4 months on..
* hair loss
* auto insurance
* depression
* erectile dysfunction
* symptoms of depression
* diabetes diet
* depression medication
* medical alert
* dental care
* breast implants
Feel free to be embarrassed about your CCSVI website, and apparent lack of intent. Your audience are not in the market for breast implants. This is not good enough, get your act together!
Luckily We Can Still Get Information From Other Self Help Groups
Direct-MS - Extensive efforts of Dr Embry and his Research Team
ThisIsMS - A forum dedicated to CCSVI
CSVI MS - Invaluable Research on CCSVI
Online Networking, developed by a mother of five who work full time despite her MS
Raising UK awareness of CCSVI and its potential influence on Multiple Sclerosis
The Multiple Sclerosis Resource Centre - Charitable Organisation in UK
CCSVICinic.com A wikiapedia Style website. This should provide answers to the questions everyone wants to know, CCSVI in relation to them. An impossible task for one person but as a community, may prove very effective. I set this up in response to the many emails I have been receiving (We Know About CCSVI, What Now?)
There are a growing number of excellent sites online, mostly by those personally affected by MS.
CCSVI.ca, left in the hands of a large MS Charity has provided us with links to dental care, hair loss & depression medication. Please show a little respect to those you claim to be looking out for.
Knowing the Nature of this Illness, Your Whispering Has Become Worrying
We do not need you on our side, we will get there without you. Some of us still want you on our side.
I fully expect CCSVI.ca website to be developed by the end of the month, with relevant information. Our trust in your motivations are faltering. Here would be a good starting point.
TODAYS DATE : 7th March 2010
... IN THE MEANTIME WE GO IT ALONE.
Disclaimer : This article is based on my opinion. Follow up on CCSVI and you will understand exactly what is happening under your noses. To ensure a factual report I have highlighted two lines based on my opinion.
1).Why are you not looking to get every MS patient screened for CCSVI?
2).Don't you not think it's time you start taking CCSVI seriously?
Staff training is varied so I am not aware of any MSSociety keeping up with CCSVI developments. They have a carefully worded statement on CCSVI, modified every couple of days or so but that's about it.
Just a matter of covering the cracks in their approach to cover themselves (me speculating again).
Congratulations on your New MSSociety drug campaign launch today, (26 march, 2010)
http://www.nice.org.uk - the new MSSociety business venture - Watch out for the drug campaigns and CCSVI avoidance, a NICE tie in with UK government.
Government responded to a CCSVI petition signed by 10,000+ people to have CCSVI treatment made available in the UK, they replied using the old red herring used by MSSocieties. This was exposed by Dr Embry. CCSVI information has exploded and vascular irregularities have been found in several, well documented cases.
It's perfectly clear some wan't to keep their "MS suffering cash machines," drain every last bit of life in them, just to keep the financial status quo.
We understand you have your agenda and we have ours. Your actions, or lack of, in the case of CCSVI, are becoming more visible to the very public you rely on, for income & support. You will always have your charity work for survival but motives are beginning to look sinister.
In the meantime, the public will cover up your shortfalls, you can go back to supporting and relieving people affected by MS, as it says on your website . Money? Symptoms? I am no mind reader but I'm guessing you meant both.
MSSociety Clan, I understand you have been keeping up-to-date with this page. If you think there are any inaccuracies, please contact me at CCSVI@ymail.com, I promise to publish your carefully written response for all to witness.
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