This Is MS Multiple Sclerosis Community: Knowledge & Support

oc

You had posted while I was writing my response to Ikulo. Interesting that we both focussing on the importance of 'hope'. It is so important to offer people with a chronic condition 'hope'. No one wants unrealistic hope but it is important to try to offer, when appropriate, hope to everyone. Not just the selected few - which has been the methodology of the UK MS Society in the past!

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Nigel

acol... Hope is the key word. I just emailed my last post to my local NMSS chapter. The carefully worded and crafted news releases from the NMSS here in the USA are almost like an insult to CCSVI advocates. It's not that the body of what they say is not important (i.e. there needs to be more evidence), but the spirit (i.e. don't go doing anything too soon) that is sorely lacking.

The UK MS Society never had it so cannot lose it ! It is a multi million pound organisation and such organisations move very slowly. If CCSVI is proven to arrest MS progression then the changes for Neurology will be earth shattering. Keep in mind that thousands of people have their careers based on the existing model of MS and the pharma industry has spent and is still spending millions on the current model and drugs to treat it.
Most pwMS in the UK face a simple choice - are you prepared to spend a few thousand pounds and have the procedure early ? Keep in mind that research is in early stages and venous angioplasty has some risks. If you are the type of person to enter into drugs trials then yes is the probable answer (the risks are similar). Don't expect the NHS to provide this any time soon. This is a personal choice !!
The MSS helps many severely disabled pwMS so is worth supporting. I say this as a former vice chair of the Oxford branch and am still a member.

Mark

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

MarkW,

Thank you for your thoughtful post. I think it is difficult for people with MS who view their various MS societies as positive advocates to accept such lukewarm responses on CCSVI. I know the neurological community and all the big pharma research will be hugely affected if CCSVI pans out. This all seems more political than for the good of the people with MS. We here on TIMS have studied Dr Zamboni's research papers over and over again. We have watched in real time as people go to Poland or Stanford for the procedure. We are happy to see the BIG NAMES who are favorable to CCSVI. We are happy to see the positive results so far. We understand CCSVI better than our doctors.

Many of us will talk with our money... then what will the MS societies do ? There has been talk about setting up a fund for the procedure for those who can't afford it. This would be a fund apart from any MS society. Dr Dake is charging $80,000 per procedure. His upcoming clinical study will probably be free for participants, but someone has to pay for it.

Right now hope is what we want.

ozarkcanoer

Hi MarkW

Welcome!

When I was first diagnosed with MS (early 90's) I immediately got a very negative impression of the MS Society. I remember my wife telephoning them about something and the person said words to the effect 'Oh, we don't believe in that!' What do you believe in, my wife asked but that question was met with stoney silence.

MS literature was appallingly bad and negative - enougth to scare the living daylights out of anyone. A new chief executive was appointed (the one preceding the current one) and I think he did quite a good job in making some very necessary changes. As a result I decided to give it a go and I have probably been a member for about 10 years. However, the momentum for change didn't seem to continue.

I am sure that many local groups do a good job of supporting people but my brief foray into a local group didn't impress. Nice people but tea and cakes on a saturday afternoon was not for me. The most exciting event was to travel to London to lobby our MP to try to abolish the appalling post code lottery for prescibing disease modifying drugs!

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Nigel

MS Society: Annual report and accounts 2008 01

http://www.mssociety.org.uk/downloads/M ... 55a39e.pdf


32.5m Total income (£)
40.5m Expenditure (£)
75% From donations

Research ?

Hi Andrew

Do they include a breakdown of their expenditure? I guess that some of the money must go towards propping up the NHS to insure that the MS nurse scheme is funded. In the past they have funded research into MRI research but as far as I am aware that research didn't reveal the results that were expected.

I guess that a huge amount of money must go on staffing costs and administration. I would assume that some of this expenditure must go on funding research but it would be interesting to discover the actual percentage breakdowns and a more precise breakdown of which research projects received the big money.

I suppose that a small minority of members do actually read these reports and therefore they would be in a better position to comment. Perhaps we all reap the natural harvest of our lethargy in failing to exam the annual reports in more detail.

If I get a chance I might have a look at your link - as an ex member of that Society.

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Nigel

A very quick look at the last Annual report revealed the following:

Out of a total expenditure of £40.5 mn.
£7.3 mn (about 20%) was spent on research. Apparently this is a record spend.
£10.7 mn for support.
£12 mn for staffing costs - an increase of about £1.5 mn over the previous year.

Research spending does not seem to be given a detailed break-down. However, pages 4 and 5 are given over to an article by Dr Ramagopalan (Ram) who has been engaged on a research project with Professor Ebers, a leader in MS research at Oxford. They are working on 'a plausible prevention strategy' over the next 2 years - partly concerning a study into Vitamin D deficiency. Ram is reported as saying 'Some of the best research is coming out of the UK and the Society does a fantastic job for MS research....'

He is also quoted as saying 'Some of the most important finds in the causes and possible prevention of MS have come from teams in the UK – and the MS Society has played a huge part in this.'

Time will tell if these boasts are justifiable! I just wonder whether the MS Society has the capacity and ability to respond quickly to a changing environment. In other words could they make a quick executive decision to fund new research, should the need arise?

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Nigel

In my hasty read I made a small error in the staffing costs. The basic cost was £12 mn but the actual cost including National Insurance and pensions raises the total to £13.4 mn or approx 33% of the total expenditure. This sum was nearly £2 mn greater than the previous year - a pretty hefty bill! Now I obtained these figures from reading the Notes to the Consolidated Accounts at the rear of the report. This figure is the total staff cost including the trustee expenses.

I find it interesting that the staff cost is so high, especially when you compare it with this headline statement which appears on pages 2/3 of the report.

How we spent each £1
1 Raising standards of care 29p (36p)
2 Support 27p (25p)
3 Research 18p (12p)
4 Cost of generating funds 13p (13p)
5 Leading the MS agenda 7p (8p)
6 Information 5p (5p)
7 Governance 1p (1p)

Staffing costs are not specifically included but the reader will be given the clear impression that only about 14% of spend relates to administration ie. cost of generating funds + governance.

Perhaps I am being unfair because the staffing cost could include the wages of the people doing research and so my analysis may be distorting/inflating the cost of running the operation. However, at least this shows the importance of reading the small print of a report and not relying on selective headlines which will always seek to show the charity/company up in a good light.

I don't doubt that a more experienced reader of company reports will point out any errors in this extremely cursory attempt to see how our money is being spent.

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Nigel

Hi all,

Thank you for the kind comments re the MSRC's Magazine "New Pathways", we do indeed have three CCSVI based articles in the current new edition.

If you do not already susbscribe to New Pathways, why not subscibe now? We are currently offering free subscriptions for one year ((to new subscribers only), to those living in the Uk, and for the cost of overseas postage to those living outside the UK.

To take up this offer or for further details, please email info@msrc.co.uk or ring the MSRC office on 01206 505444.

squiffs

Hi squiffy2

I have subscribed to Pathways for a number of years - certainly since Judy Graham came on the scene. Her book was one of the first books that I read shortly after I was diagnosed - and a very good book at that! In fact I had all my amalgam removed after becoming aware of its potential dangers and irrespective of whether or not it helped control my MS, it is not a decision that I have ever regretted.

I think Pathways is pretty good - always a good read (end of free plug!!). In fairness there are one or two wacky ideas of 'alternative remedies' but it is easy for one to make a judgment about what is feasible and what is not! At least the magazine makes the reader aware of what is going on and what might improve one's condition. It does not 'censor' or make judgments - sensibly it leaves those decisions for its reader. However, you cannot make a decision about what you don't know about. Not everyone has the Internet or the ability to find out precise detail of what is happening in the wider world.

I generally regard myself as keeping pretty up-to-date with new developments regarding MS. However, I missed CCSVI until Pathways brought it to my attention. I very soon alighted upon this wonderful MS Web-site and it didn't take me too long to make my own mind up. (Reciprocal plug - perhaps Pathways could alert their readers to the wealth of information available on this web-site?). The UK MS Society has chosen to take another route and to keep its readers in ignorance of this new development. I am not sure how long it will be allowed to continue with this stance.

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Nigel

Important to note that the very vocal UK MS advisor, Dr. Alistair Compston, has written disparagingly about Dr. FA Schelling and the venous connection to MS in his McAlpine's MS book (page 35, latest addition) Of course he does not want this taken seriously. His whole career is based on drug trials and disparaging any other research-

We have an e-mail/call in/letter writing campaign going on over on the Facebook page today. Click the blue CCSVI letters on my signature to get there.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I sent Dr Compston my email

Dr Compston,

Please be worthy of your Charcot award. Dr Zamboni's CCSVI theory is the best research we have ever seen to actually help patients like me who suffer from MS. You say you are a scientist. Open your mind and think. Read Zamboni's research papers, all of them. Discuss this with vascular disease specialists. Please don't crush this research by using your reputation, otherwise you may lose your reputation.

Thank you,

.

Here is the email I sent earlier....trying to play nice to see if I can get any kind of response....

Hi Dr Compston,

First let me say as a caregiver for my wife who at the age of 34 can no longer walk without assistance due to MS I greatly appreciate the work you’ve done in your career to help advance the research and medical treatment of MS. After hearing of your recent dismissal of Dr Zamboni’s theory of CCSVI and am writing you for evidence supporting this dismissal, and to clarify if I have misunderstood your stance based on what I’ve read.

Other than the fact that Dr Zamboni’s study was very small and perhaps had some controls issues in regards to consistency, is there anything regarding the science of CCSVI that you know which would definitely disprove the theory? Do you think more testing needs to be done to look into this new avenue of possibility? Basically, I respect your opinion and am curious to hear directly from you what you think instead of the media which I know can be very twisted in the way they report things.

Thanks for your help and clarification!

Cheers,
John