Has the UK's MS Society lost the plot?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Has the UK's MS Society lost the plot?

Postby acol » Fri Dec 04, 2009 8:50 am

From a personal perspective, CCSVI is by far the most promising concept that I have read about since I was diagnosed with MS over 16 years ago. During this time a number of false dawns have been reported upon by both the media in general and in specialist MS publications. In the UK the 2 main magazines are ‘MS Matters’ - by the UK MS Society and ‘Pathways’ by MS Resource Centre.

What amazes me is the apparent bias of the UK MS Society. Over the last 10 years a huge amount of magazine space has been given to new drug trials and the interferons in particular. The vast majority of these disease modifying drugs have been concentrated upon RRMS with a smaller share going to SPMS and with PPMS being largely ignored. In other words, probably less than 50% of MS sufferers are eligible for such drugs. Rationing within our health service - yes we are rationed!!! - reduces the level of eligibility still further. If we then consider the fairly dubious efficacy of a lot of these expensive drugs plus considering their side-effects, we begin to ask ourselves - who is being represented by our national MS Society?

I have already decided that the MS Society does not represent my needs - nor that of of many of my fellow sufferers! I had mentally decided to give the Society one last chance. If it failed to give due mention to CCSVI in the Nov/Dec magazine I would terminate my membership and support. This morning the magazine arrived and the subject didn't even get a single line entry - zilch!

Of course I agree that CCSVI is new and that much more research is needed. However, I don’t believe that anyone with intelligence could possibly dismiss what has already been achieved as either irrelevant or uninteresting to anyone who is suffering from MS. Viewed objectively the subject, albeit in its infancy, must surely be potentially exciting and at least as worthy of discussion as some of the previously published drug trials. There is understandable logic in CCSVI, which is more than can be said of many of the drugs which are currently being given much more editorial space,

In my view the subject certainly warrants discussion amongst the people who actually have MS. Who do the MS Society think they are to actually try to keep CCSVI secret from their members? Are they afraid that we will follow Ashton Embry's advice and go to their open windows and shout 'I'm mad as hell and I'm not going to take it any more!'

Sadly, the MS Society has lost the plot as far as I am concerned. The truth of the matter is probably that they have been caught out on the hop by the BBC news clip which followed from the Canadian TV broadcasts. If this was the case then it is even more unforgivable because it reveals that our MS Society was completely ignorant of what had been going on behind the scenes with a potentially important development on MS. The MS Society has the money and resources to look after our interests. It is plain to me that this is not being done.
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Postby wonky1 » Fri Dec 04, 2009 9:06 am

Yes they have lost the plot and as of this morning they have also lost my membership.
A cynic would allude to the fact that if there is no more MS then there's no more MS society.
To give them the benefit of the doubt maybe they don't want to raise hopes too early, I doubt that's the reason though.
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Postby Johnnymac » Fri Dec 04, 2009 9:09 am

it is sad how as non-profit organizations grow in size so does their dependence on outside money to operate. Here in the US there are two basic paths a non-profit can go down (i'm simplifying of course) - 1) Government grants and assistance - in this scenario there are certain things the non-profit has to do in terms of disclosure, management and some of their operational practices. 2) All private money from fundraisers, investors, etc...this is the preferred way for a lot to keep the governments hands out of their operation. It does however create the possibility of the non-profit becoming too reliable on certain revenue streams (like big Pharmas), and regardless of if they do let those investors influence their marketing/support of certain trials it will always leave the door of speculation open.

I don't know if this is true but I've read in other threads the US National MS Society puts a relatively small percentage of the donations they receive back into MS research.
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Postby acol » Fri Dec 04, 2009 9:13 am

Hi Wonky

Personally, I think that while they hope that the subject goes away they will be forced to make some form of response. I think that the subject has already been reported in one of the daily nationals - Express - I think. I am sure that it will be reported in others, probably with the usual journalistic embellishment.

Funnily enough it has now become a hot talking point at my MS Therapy Centre. This Centre has about 500 patients and the 'boss' was apparently quite excited. It will be interesting to see how this pans out in due course.
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uk ms society losing it

Postby crocky » Fri Dec 04, 2009 9:19 am

I can only agree with your statement - I find it extraordinary that this whole subject is being practically ignored by the UK society.
I have had RRMS for the last 10 years and this is by far the most exciting thing to have happened - why the silence?
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Postby Mutley » Fri Dec 04, 2009 9:23 am

Great post Nigel and I couldn't agree more. It's interesting to see the contrast between the way the MSRC magazine highlights CCSVI with front page billing and multiple pages devoted to it inside, and the way that the MS Society magazine reports nothing.

I even called the MS Society press office this week to ask what they were doing ref CCSVI, but upon asking I was met with a long pause and a "CCSVI? What’s that then" comment.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby 81Charger » Fri Dec 04, 2009 9:30 am

Here in Canada it's about the same. That's why I'm not a member, all they really want to talk about is the drugs & wheel chairs. They are studying CCSVI I wonder how many years that will take?

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Postby acol » Fri Dec 04, 2009 9:37 am

I feel great - just cancelled my direct debit - wonderful feeling! I was tempted to write to them to tell them why I was cancelling. However, I had a feeling that I would be wasting my time. If I told them what I really thought they would never publish!
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Postby Johnnymac » Fri Dec 04, 2009 9:42 am

acol wrote:I feel great - just cancelled my direct debit - wonderful feeling! I was tempted to write to them to tell them why I was cancelling. However, I had a feeling that I would be wasting my time. If I told them what I really thought they would never publish!


you absolutely should tell them why you canceled, they need to know a direct lack of action on their part is losing memberships
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Postby ikulo » Fri Dec 04, 2009 9:48 am

I've done some volunteer work for the MS Society and the comments here are way off base. The MS Society, at least here in the US, has a focus on promoting the well being of MS sufferers which involves much more than just promoting the newest hope for a cure. There are many aspects to their operation, from providing social and legal advocacy for MS sufferers, providing financial assistance, organizing events to raise awareness, and of course raising money to help those MSers who are experiencing financial challenges. I myself have gone with the society to many bed-ridden MSers on holidays to bring them presents and well wishes.

It's obvious that organizations such as these must be responsible in their promotion of "cures." What if they're wrong? And let's face, I understand that everyone keeps repeating the mantra that "this was never promised to be a cure," but in reality everyone is operating as if it were. Professional organizations do not have the luxury of being able to directly promote new hopes for a cure this early in the research. Don't get me wrong, I believe they are perhaps taking a far too cautious position in this matter. Nevertheless, they continue to provide valuable programs for MSers. It's a shame that all the positive work they do should be overlooked because of their approach to this new hope.
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Postby acol » Fri Dec 04, 2009 9:58 am

Hi Johnnymac

You make a good point. Perhaps I will get the views of more of my colleagues and then write. I know that many of them often moan about MS matters and that generally speaking my friends with MS prefer the more positive tone of 'Pathways'.

Sadly, the MS Society are not likely to change their policy even if a dozen or more people leave. They are just too set in their ways. But maybe I will try.

Regards

Nigel

PS Avatar looks lovely! :)
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Postby ClaireParry » Fri Dec 04, 2009 10:26 am

Great post!! I've been so disappointed by the coverage on the MS Societyy site, and whats there appears to be written under duress.

Why shouldn't we have a say in how our subscriptions are used? I vote for UK based CCSVI research!

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Postby ozarkcanoer » Fri Dec 04, 2009 10:36 am

ikulo... I have organized two MS walks and raised money for the USA NMSS. Plus I have donated $75 each for 6 bikers two years in a row. I think what most people want is hope. My family has donated to the NMSS as a Christmas present for me. CCSVI means hope. Those of us (including many respected scientists and doctors) who NEED hope are very disappointed in the lukewarm response of the NMSS to the CCSVI news. The NMSS news releases about CCSVI seem to be written by a lawyer. And the NMSS reports on new research they are studying are same old same old. I just can't get excited about another drug that MAY help and that is extremely expensive.

The NMSS should be about hope. They don't need to say that CCSVI is a cure, but they had better be more positive or they will lose funding from people like me who will direct their $$$ to Dr Haacke's study or to the Buffalo Study or to Dr Dake's upcoming trials.
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Postby acol » Fri Dec 04, 2009 10:37 am

Hi Ikulo

I don't think that anyone is doubting that MS Societies across the world do some good work with the millions of £'s or $'s that they receive in donations. My criticism is mainly levelled at the apparent bias of their reporting of selective treatments. I think that in reality they only represent a small proportion of the people with MS. They spend too much time on highly dubious drugs which in reality are only available for a very small proportion of people with MS. When you have PPMS it is very irritating to read about these drug trials to the exclusion of something that might possibly offer hope for the future of everyone with MS!

I have difficulty understanding the selectivity of their publication. What is the difference between writing about disease modifying drugs and writing about CCSVI? Both types of journalism require degrees of caution and caveats when appropriate? However, both types of article are also written with a view to offering some realistic hope for the sufferer. In the past the MS Society has written about Goats Serum and other dubious drugs. Why should they be selective about CCSVI? Is it because it might upset the all too powerful body of neurologists?

I also think that MS Societies have a duty towards the large number of sufferers - including those who are newly diagnosed, who are only marginally disabled, in the grand scheme of things. Don't these people need hope and encouragement for the future?

Articles can offer hope while at the same time being written in a responsible way. IMO the MS Society has a duty to keep its members informed of new developments in a responsible way. It is disgraceful to publish the monthly magazine without even mentioning a potentially encouraging new treatment.

Incidentally, the Society have published reports on many drugs which are now viewed as having only limited benefit. I don't expect them to always report on successful treatments which stand the test of time but I would like to be advised of what may become available in the future - subject to the usual research and trials.
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Postby SarahLonglands » Fri Dec 04, 2009 10:39 am

Actually, I never have been member of the UK MS Society and get very annoyed about how they constantly claim that people with MS live a nearly normal lifespan, disregarding how this is lived.

Luckily I was able to put my MS behind me with doxycycline, roxithromycin and metronidazole, trialed years ago, although not for MS.

I was wondering how long these CCSVI procedures would be allowed to go on without trials: remember that one person has died from a stroke on her way home from a procedure, which although it might have happened anyway, the bleeding couldn't be stopped because of coumadin and not all people die from strokes or are permanently disabled by them. Now one person has undergone open heart surgery because of a migrating stent.

At least you know that something that might help you is n the offing, but in the meantime you could always try what I did.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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