JK Rowling quits Scotland's MS Society before Global CCSVI Outrage
On April 2009, the author JK Rowling announced that she was quitting as patron of the Multiple Sclerosis Society, Scotland. She claimed there was a major internal row which compromised her conscience.
As a staunch supporter of MS Society for almost a decade, the author Rowling, famed for writing the "Harry Potter" book series, was left disillusioned, claiming a "longstanding and escalating" rift between, Scotland's branch of the MS Society and their london counterparts, damaged morale within the Society, citing staff resignations.
She said she could no longer remain a public representative for the organization. JK Rowling's invention of the dementors is said to have come from witnessing her mother's multiple sclerosis.
Sadly, Rowling's mother died of MS when she was just 45. This gave her a burning desire to seek a better life for the growing MS patient population, and become a high profile, outspoken advocate for more research into the illness. She highlighted a need for "better standards of care" for those directly affected with the disease.
Rowling took part in a 2003 campaign to establish a national standard of care for MS sufferers. She made a substantial contribution which helped in the creation and development of a new Regenerative Medicine Centre at Edinburgh University.
For reason's unknown, Scotland has the highest prevalence of MS in the world, with more that 10,000 people affected by MS, roughly one in 500 residents. These numbers are expected to increase considerably.
Global Multiple Sclerosis Drug Market 2010-2025
Many have carved luxurious lifestyles out of this growing dependency of MS care. They do not share J K Rowling's desires to seek the reduction for the need of treatment. I won't ponder, on the huge financial motives surrounding many charitable related issues, but feel it is relevant to today's hottest MS topic, CCSVI.
"Rising disease prevalence, expanding patient populations, technological advances and widening healthcare provision for MS will drive the market upwards."
J K Rowling Resignation from MS Society Scotland
In an April 2009 resignation statement, Rowling said it was "with profound sadness and regret," but would continue to donate time and money, to the Multiple Sclerosis cause, and would maintain her relationship with Edinburgh university.
She stated:
"I have now reluctantly decided that I cannot, in good conscience, continue to be the public face of a charity that is changing beyond recognition from the one with which I have been so proud to be associated."
At the time, an MS Society spokesperson accepted their organization was at at the centre, of "governance review," and deeply regretted leaving Rowling's little option, but to hand in her painful resignation.
Rowling's moved on to inform us that she arranged a mediation session, in the fading hopes, the battle between the charity's Scottish council and management in London, could regain a healthy relationship.
Rowlings continued..
"Unfortunately, this achieved very little,"
"With mounting frustration and disappointment, I have witnessed resignations of immensely dedicated people within MSSS and the increasing demoralization of staff whom I have come to know and admire over the 10 years of our association."
Then she proclaimed from deep within her heart,
"This disease claimed my mother's life at the age of 45, and I hope to continue giving both time and money to a cause which remains so close to my heart."
An MS Society spokesperson accepted that Rowling had been a great patron for many years, and publicly apologized for her, morally enforced decision to resign.
"We are a strong, democratic organization and this review is being done in consultation with all of our 43,000 members. We would have preferred to do this with JK Rowling's involvement, but we appreciate that significant change can be difficult."
A spokesperson for the MS Society of Scotland informed us that an agreed statement was issued by the society nationally, and that was their last comment on this matter.
MS Societies globally, are facing rocky times.
Doctor's, surgeon's, patient's, family members, and a growing number of outraged member's of the public are outraged at MS Societies worldwide, at their astonishing dismissal of medical fact.
CCSVI is already a globally recognized condition, a problem found in over 50% MS patients' tested. CCSVI is a vascular condition, and vascular comorbidity is now associated with more rapid disability progression in multiple sclerosis.
The MS Society have taken it upon themselves to legally represent the MS patient population, as such owe them a "duty of care."
I published a record of CCSVI development in recent "YEARS", to track some of the astonishing stories surrounding CCSVI patients.
Some say of a CCSVI clinic in Poland,
"It's like a mini Lourdes, with better results!"
These stories cannot be considered medical fact but they are inspiring tales of hope and determination. The MS Society have not, to my knowledge, published any of these uplifting patient stories, so I added to MS information for public consumption.
I also highlighted powerful medical documentation, most of which will not be found on MS Society websites, and added relevant medical proof, not only for public use, but for the MS Societies to update their website information on CCSVI globally.
The MS Society have initial concerns. They want to find a cause for MS, they are not convinced by medical proof. They seem to cite every problem bar their main areas of concerns, as the public's Medical Expert's.
- How quickly can we arrange MS patient screening globally?
- Can we treat this safely?
I apologize to the MS Society if you are unhappy you feel bullied by public viability of your reactions to MS. The website was designed to explore positive and negative attention surrounding CCSVI. The MS Society based their dissent of CCSVI on the outdated opinion's of their own Medical Advisors. Many patient's and families are on the verge of legal action against our self nominated experts of multiple sclerosis.
MS Societies are in such a powerful position, our own UK government based their poorly written response to a CCSVI request, for MS patients in the UK. The 10,000+ petition was returned with an apparent lack of thought.
A number of medical advisers to the MS Society have read the papers published by Dr Zamboni, and have heard him lecture on the subject. The advisers have provided the following statement about the alleged link between MS and CCSVI:
"We are not convinced by the evidence that blockages to draining veins from the brain are specific to people with multiple sclerosis, or that this explains the cause of multiple sclerosis at any stage of the condition."
"We are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit. "
The government's response was insufficient because it was a third party response, based on a medical group who may been unaware of CCSVI. Maybe the MS Societies just need to assess their position, both morally and legally, as assumed patient welfare representatives. They could even look at the regularly updated informational MS website(UK).
No Smoke Without Fire
I cannot comment on J K Rowling's feeling's towards the MS Society of Scotland, and they have closed all options in that respect, but I can say one thing,
"I bet to JK Rowling was thinking of her mother, as she washed her hands of the MS Society of Scotland."
Rowling exposed a problem within in the ranks.
- Was it the warning a bigger storm was to come?
- Why the desertion of a high profile campaigner who helped establish a national standard of care?
Why is it when we get empathetic and supportive people like JK Rowling on our side, do we throw it away? Was it it change of focus from patient care.
MS Society PR Nightmare
MS Societies worldwide face a public relations nightmare. To date, they have yet to set up specific CCSVI screening, and develop wider access to treatment. I expect a positive response will be published globally and appropriate press releases made are the earliest opportunity.
So no more talk of cure & cause, they need direct help now, help that requires locating and treating a condition now visible. Do it if only for your own piece of mind!
Poor JK, we can now share her views from the CCSVI fiasco. Internal battles may be part of the mentality, but ultimately it boils down to patient care. Rowling's knew this, and for whatever reason she had from the distancing herself from MS Society's most certainly would not have been taken lightly.
" I expect to pass through life but once. If therefore, there be any kindness I can show, or any good thing I can do to any fellow being, let me do it now, and not defer or neglect it, as I shall not pass this way again. " - William Penn
People like JK Rowling want to help. They understand the effects MS may have on a persons body. Red tape can be a difficult barrier to pass. I wish JK all the best with her efforts at Edinburgh University. MS is a complicated illness and we need all the dedicated help we can get.
Background
About: Joanne K Rowling - Wikiapedia
JK Rowling Steps Down from MS Society Scotland? - Although JK may be restricted from speak publicly on this matter, look at her overwhelming support in the comments section. She has aims within MS, and that is to benefit the patient. CCSVI, MS, stem cell treatment or diet, it doesn't matter, whatever she is doing now, you can bet your last dollar she is doing her best for multiple sclerosis.
MS Society Forum Opinion of JK's Loss
Class Action World Message Board - "CCSVI has been found in MS patients and there is a simple treatment for it. But I'm being refused that treatment due to the MS label."
JK Rowling: Learning to live with fame, fortune and life without Harry - Death, and the fear of death, hang over the Potter chronicles in a way that's unusual in books aimed at children. Critics looking for the psychological underpinning of the plot have pointed to Harry's distress at losing his mother, and his desire to be reunited with her, which seem to echo Rowling's own feelings.
Some of my own thoughts - MS is a huge problem in Scotland. I knew very little until my sister told me about CCSVI. She was recently diagnosed but we reckon her symptoms started 15 years before. I feel as though I have studied more in the last few months than I did throughout my entire school years. I charted some of my thoughts and referenced them as I studied MS and Diet.
Offer Your Support, Copy the Code below and Link to This Website.
With Your Help, We Can Give This New Approach The Publicity it Deserves!
If you have any information you would like to add, or see anything you think we should amend, feel free to contact us.
