A new concept and treatment options for MS

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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Tue Sep 04, 2012 12:25 am

vesta wrote:I don't agree with the Diabetes theory at all. I don't have Diabetes. I think it's a question of blood circulation and cerebrospinal fluid circulation, both of which can be impeded by muscular stress. I agree there is too much complication. What if the main issue is simply the role of neck, shoulder and back tension on the veins leading from the brain and spinal cord (as noted by Dr. Zamboni et al) Apparently women have higher rates of MS than men between the onset of puberty and menopause. Maybe for women the role of monthly menstrual cramps is enough to compress the vascular system. Proper diet serves 2 functions, it removes stress from the vascular system and nourishes the CNS correctly. Maybe after age 60 there are fewer MS onset cases because the candidates are dead. (Or retired and subject to less stress. Yes, there is the hormonal factor which may stress -or enhance- the vascular system as well.) Anyway, I think the Chinese Medicine observation that MS treatment involves balancing the meridians beginning on the head and running down the neck, shoulder and /or back (gall bladder and bladder) says something about the root cause of MS. See MS Cure Enigmas.net


Vesta, it may take a further step in your mind but then the quintessense of what you say is no different from what I say.
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Re: A new concept for MS [I think I found it: This Is MS]

Postby erimus » Tue Sep 04, 2012 3:48 am

Article on the sugar/ gut bacteria / immunity / diabetes connection

http://www.medicaldaily.com/articles/11 ... t-risk.htm
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Re: A new concept for MS [I think I found it: This Is MS]

Postby vesta » Tue Sep 04, 2012 11:44 am

Leonard; No reason to be snide. You don't mention the simple factor of muscular stress actually compressing the vascular system. Or misaligned vertebrae. Anyway, I agree that all the complexity distorts unnecessarily the main issue, various factors stress or even deform the vascular system leading to a blood reflex (and maybe cerebrospinal fluid). Well, maybe you do mention it somewhere I haven't read the entire thread. I don't even think most doctors are equipped to treat MS as it should be treated.
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Re: A new concept for MS [I think I found it: This Is MS]

Postby vesta » Tue Sep 04, 2012 12:47 pm

For info: In reference to Leonard's post June 15, 2012 on medical research universities drug companies etc. He is right, the root problem is political, not medical.
Following quote by Marcia Angell "The Truth about the Drug Companies" New York Review of Books July 15, 2004

"The election of Ronald Reagan in 1980 was perhaps the fundamental element in the rapid rise of big pharma—the collective name for the largest drug companies. With the Reagan administration came a strong pro-business shift not only in government policies but in society at large. And with the shift, the public attitude toward great wealth changed. Before then, there was something faintly disreputable about really big fortunes. You could choose to do well or you could choose to do good, but most people who had any choice in the matter thought it difficult to do both. That belief was particularly strong among scientists and other intellectuals. They could choose to live a comfortable but not luxurious life in academia, hoping to do exciting cutting-edge research, or they could “sell out” to industry and do less important but more remunerative work. Starting in the Reagan years and continuing through the 1990s, Americans changed their tune. It became not only reputable to be wealthy, but something close to virtuous. There were “winners” and there were “losers,” and the winners were rich and deserved to be. The gap between the rich and poor, which had been narrowing since World War II, suddenly began to widen again, until today it is a chasm.

The pharmaceutical industry and its CEOs quickly joined the ranks of the winners as a result of a number of business-friendly government actions. I won’t enumerate all of them, but two are especially important. Beginning in 1980, Congress enacted a series of laws designed to speed the translation of tax-supported basic research into useful new products—a process sometimes referred to as “technology transfer.” The goal was also to improve the position of American-owned high-tech businesses in world markets.

The most important of these laws is known as the Bayh-Dole Act, after its chief sponsors, Senator Birch Bayh (D-Ind.) and Senator Robert Dole (R-Kans.). Bayh-Dole enabled universities and small businesses to patent discoveries emanating from research sponsored by the National Institutes of Health, the major distributor of tax dollars for medical research, and then to grant exclusive licenses to drug companies. Until then, taxpayer-financed discoveries were in the public domain, available to any company that wanted to use them. But now universities, where most NIH-sponsored work is carried out, can patent and license their discoveries, and charge royalties. Similar legislation permitted the NIH itself to enter into deals with drug companies that would directly transfer NIH discoveries to industry.

Bayh-Dole gave a tremendous boost to the nascent biotechnology industry, as well as to big pharma. Small biotech companies, many of them founded by university researchers to exploit their discoveries, proliferated rapidly. They now ring the major academic research institutions and often carry out the initial phases of drug development, hoping for lucrative deals with big drug companies that can market the new drugs. Usually both academic researchers and their institutions own equity in the biotechnology companies they are involved with. Thus, when a patent held by a university or a small biotech company is eventually licensed to a big drug company, all parties cash in on the public investment in research.


These laws mean that drug companies no longer have to rely on their own research for new drugs, and few of the large ones do. Increasingly, they rely on academia, small biotech startup companies, and the NIH for that.7 At least a third of drugs marketed by the major drug companies are now licensed from universities or small biotech companies, and these tend to be the most innovative ones.8 While Bayh-Dole was clearly a bonanza for big pharma and the biotech industry, whether its enactment was a net benefit to the public is arguable.

The Reagan years and Bayh-Dole also transformed the ethos of medical schools and teaching hospitals. These nonprofit institutions started to see themselves as “partners” of industry, and they became just as enthusiastic as any entrepreneur about the opportunities to parlay their discoveries into financial gain. Faculty researchers were encouraged to obtain patents on their work (which were assigned to their universities), and they shared in the royalties. Many medical schools and teaching hospitals set up “technology transfer” offices to help in this activity and capitalize on faculty discoveries. As the entrepreneurial spirit grew during the 1990s, medical school faculty entered into other lucrative financial arrangements with drug companies, as did their parent institutions.

One of the results has been a growing pro-industry bias in medical research—exactly where such bias doesn’t belong. Faculty members who had earlier contented themselves with what was once referred to as a “threadbare but genteel” lifestyle began to ask themselves, in the words of my grandmother, “If you’re so smart, why aren’t you rich?” Medical schools and teaching hospitals, for their part, put more resources into searching for commercial opportunities.

Starting in 1984, with legislation known as the Hatch-Waxman Act, Congress passed another series of laws that were just as big a bonanza for the pharmaceutical industry. These laws extended monopoly rights for brand-name drugs. Exclusivity is the lifeblood of the industry because it means that no other company may sell the same drug for a set period. After exclusive marketing rights expire, copies (called generic drugs) enter the market, and the price usually falls to as little as 20 percent of what it was.9 There are two forms of monopoly rights—patents granted by the US Patent and Trade Office (USPTO) and exclusivity granted by the FDA. While related, they operate somewhat independently, almost as backups for each other. Hatch-Waxman, named for Senator Orrin Hatch (R-Utah) and Representative Henry Waxman (D-Calif.), was meant mainly to stimulate the foundering generic industry by short-circuiting some of the FDA requirements for bringing generic drugs to market. While successful in doing that, Hatch-Waxman also lengthened the patent life for brand-name drugs. Since then, industry lawyers have manipulated some of its provisions to extend patents far longer than the lawmakers intended.

In the 1990s, Congress enacted other laws that further increased the patent life of brand-name drugs. Drug companies now employ small armies of lawyers to milk these laws for all they’re worth—and they’re worth a lot. The result is that the effective patent life of brand-name drugs increased from about eight years in 1980 to about fourteen years in 2000.10 For a blockbuster—usually defined as a drug with sales of over a billion dollars a year (like Lipitor or Celebrex or Zoloft)—those six years of additional exclusivity are golden. They can add billions of dollars to sales—enough to buy a lot of lawyers and have plenty of change left over. No wonder big pharma will do almost anything to protect exclusive marketing rights, despite the fact that doing so flies in the face of all its rhetoric about the free market.


As their profits skyrocketed during the 1980s and 1990s, so did the political power of drug companies. By 1990, the industry had assumed its present contours as a business with unprecedented control over its own fortunes. For example, if it didn’t like something about the FDA, the federal agency that is supposed to regulate the industry, it could change it through direct pressure or through its friends in Congress. The top ten drug companies (which included European companies) had profits of nearly 25 percent of sales in 1990, and except for a dip at the time of President Bill Clinton’s health care reform proposal, profits as a percentage of sales remained about the same for the next decade. (Of course, in absolute terms, as sales mounted, so did profits.) In 2001, the ten American drug companies in the Fortune 500 list (not quite the same as the top ten worldwide, but their profit margins are much the same) ranked far above all other American industries in average net return, whether as a percentage of sales (18.5 percent), of assets (16.3 percent), or of shareholders’ equity (33.2 percent). These are astonishing margins. For comparison, the median net return for all other industries in the Fortune 500 was only 3.3 percent of sales. Commercial banking, itself no slouch as an aggressive industry with many friends in high places, was a distant second, at 13.5 percent of sales.11

In 2002, as the economic downturn continued, big pharma showed only a slight drop in profits—from 18.5 to 17.0 percent of sales. The most startling fact about 2002 is that the combined profits for the ten drug companies in the Fortune 500 ($35.9 billion) were more than the profits for all the other 490 businesses put together ($33.7 billion).12 In 2003 profits of the Fortune 500 drug companies dropped to 14.3 percent of sales, still well above the median for all industries of 4.6 percent for that year. When I say this is a profitable industry, I mean really profitable. It is difficult to conceive of how awash in money big pharma is.

Drug industry expenditures for research and development, while large, were consistently far less than profits. For the top ten companies, they amounted to only 11 percent of sales in 1990, rising slightly to 14 percent in 2000. The biggest single item in the budget is neither R&D nor even profits but something usually called “marketing and administration”—a name that varies slightly from company to company. In 1990, a staggering 36 percent of sales revenues went into this category, and that proportion remained about the same for over a decade.13 Note that this is two and a half times the expenditures for R&D.

These figures are drawn from the industry’s own annual reports to the Securities and Exchange Commission (SEC) and to stockholders, but what actually goes into these categories is not at all clear, because drug companies hold that information very close to their chests. It is likely, for instance, that R&D includes many activities most people would consider marketing, but no one."

What if most people with MS would be better off detoxifying, optimal nutrition, self acupressure, or ostepathy or homeopathy etc, meditation, in short alternative therapies (and angioplasty when necessary) Where are the big bucks in that?
MS Cure Enigmas.net
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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Fri Sep 07, 2012 2:43 am

vesta wrote:For info: In reference to Leonard's post June 15, 2012 on medical research universities drug companies etc. He is right, the root problem is political, not medical.
....


Vesta, you are right, the problem is political, but it is also medical, bio-technical, etc. It points to a systemic failure that is unprecedented, to what can happen if one operates an 'eco-system' where a distributed responsibility makes room for a distributed irresponsibility. That can happen easily. I won't expand here on the modalities of operating such a system…. there are plenty of examples around… The book cited below will give you some examples..

The perspective you sketch of big pharma growth is generally o.k., I do not necessarily disagree with you there, but I must say that there are other perspectives too. It is generally recognised that the Bayh-Dole Act is synonymous for innovative America. And it had strong positive effects in other domains, such as for instance ICT. Books have been written about Bayh-Dole, many studies done, if you do a search on Google you easily hit the 1 Million mark.

I think that the most important thing that Bayh-Dole did is that it laid the seeds for an entrepreneurial and innovative culture to grow. And in a global competitive world, innovation and renewal is the only way for our economies to "evolve and regenerate." That is true on this side of the pond as much as in America. If you like to read into this matter and where things can 'go wrong in the system' and what to do about that, I can recommend you the book titled Start-up nation by Dan Senor and Paul Singer that provides fascinating insights into the story of Israel's economic miracle, and on the need to re-invent...
http://www.amazon.com/Start-up-Nation-I ... s=start-up

I am convinced that there is room for laws and regulations such as Bayh-Dole, but they must be the right regulations, when and where critically needed, and if necessary for specific domains. I have been into this matter now for almost 2 years, unwillingly, but I have MS and could not accept my destiny. If you would ask me where I think things went wrong, it is already in the 1940's/1950's when the results of Putnam (who tied up the Internal Jugular Veins of dogs that then developed MS) and others were ignored. The neurology then developed on the premise of immune system diseases that, rather than finding a "mechanical" fix for the problem (admittedly, may have been a bit more difficult at that time), should be treated or were treatable with medication. I have seen suggestions that link the Welsh-Rose Act of 1915 (details?) with this turn in history. So perhaps, but this is now for others to find out, the roots of the current systemic failure are almost a century old.

Incidentally, some 2 years ago, there was a very illuminating thread on this forum TIMS on what happened in the 40's/50's which, in a matter of one weekend, revealed the gist of the mistake made and reads like a full criminal investigation... It shows the power of these fora. It is probably still around somewhere...
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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Tue Sep 11, 2012 2:36 am

http://www.guardian.co.uk/commentisfree ... hic-effect

Just as was elaborated for MS on this thread, it may well be possible and in fact looks ever more likely that many neuro-degenerative diseases are diabetes / metabolic syndrome related and were wrongly earmarked as immune system diseases. Quote from the article: A large body of evidence now suggests that Alzheimer's is primarily a metabolic disease. Some scientists have gone so far as to rename it: they call it type 3 diabetes.

The postings on pages 3 and 4 of this thread already made an allusion to the link of MS and Alzheimer's with diabetes, the role of Metformin (Berlin trial) etc. Also of interest there is a statement made by a NYC professor on a local TV station, that is that the cortex generates its own insulin (probably the cortex could develop so big for that reason….). And just like with diabetes type 1 (pancreas fails to produce insulin), if something goes wrong with the insulin production in the brain, the local cells will starve because of malnutrition, one gets holes in the brain and is diagnosed with Alzheimer's.

You may think that this is all a bit far-fetched, but I think this is yet another powerful confirmation of the line of thinking on this thread on MS and its diabetes relationship.

As I said before, here opens up a new frontline in the discussion, on diabetes, glucose control, and the role of the gut microbiota. I think that it is now for professionals to vigorously pursue this work and in a coordinated effort...
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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Wed Sep 12, 2012 7:08 am

On the other thread on "Insulin--Could This Be the Key?" there was a question on the use of diabetes 2 medication for MS.
CureOrBust wrote:Sorry if this has been covered before. But, if we were to suppose that insulin resistance is a causative factor for MS, would treatment with drugs used to reverse Insulin Resistance be measurably beneficial to MS? eg metformin, thiazolidinediones or exenatide (marketed as Byetta)

ie could someone simply try these drugs and see if their MS improves?


My reply may be important here too; that is why I copy it here..

I try to minimize my consumption of sugar and fructose (drinks).
This article that I found on the other thread that Lyndacarol recently started on the 'fat switch' is not without its merits:
http://fitness.mercola.com/sites/fitnes ... artTest_A1

And I take metformin and glimperide.
I am convinced that they have strong synergetic effects, and work via the gut.
I consider it as an alternative for feces transplantation (which I see as a last resort measure...).

Since I stopped sugar intake and started medication, I lost 8 kg of weight, 10% of my weight.
And guess what: the fatty belly is gone :)
I did not expect this, this was not the intent, but it just happened..
And the feces improved strongly; it already had somewhat improved when I started with a low fat diet several years ago but now the improvement was remarkable, in particular after I started with the glimperide..

And some other things did improve: I am dreaming a lot, just like was the case when I was just liberated from my venous insufficiency in the neck, but now it lasts...; and I am sweating again, you won't believe... it demonstrates changes to the metabolism... and I feel generally good...

But the short-term effect on the motor function is not directly positive.
My explanation for this is: The supply of easy glucose to the cells will be slowed; and so the charging of the ion pump.
I know that if I would drink a few bottles of coke, the motor function would improve fast but that it would have a reverse effect on my disease in the long run (as it would increase insulin resistance).

But I remain convinced about the long term effects, i.e. that the course set will enhance my insulin sensitivity (and with that probably also improve the functioning of other receptors).
And that in the long run, the motor functions will stabilise and improve.
Perhaps my believe in this is so strong that the 'placebo' effect takes control here - I am kidding ;)

But you have to bear with me for a little longer, probably another half year to a year...
For diabetes 2, it works - I have seen it with my dad, so I see no reason why it would not work for me (as I consider my MS to be fully diabetes 2 related).
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Re: A new concept for MS [I think I found it: This Is MS]

Postby vesta » Wed Sep 12, 2012 7:57 am

I believe many metabolic disorders can stress the organism and impede blood flow through the brain. But CNS damage may take time to heal. How long ago was angioplasty performed on you? How much time has elapsed since the MS symptoms injured the cells? Do you optimise your diet to nourish the damaged cells? (eg raw vegetable juice etc) I'm curious to know what intervention you've had and when, maybe you can indicate the page. Thanks
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Re: A new concept for MS [I think I found it: This Is MS]

Postby erimus » Wed Sep 12, 2012 10:09 am

Leonard I've followed your thread and agree with your reasoning. Just one genuine question for you:
Why do you consider a fecal transplant as a last resort rather than the preferred treatment option, or even as a combined treatment option along with metformin/glimperide ?
From what I've read fecal transplants are showing good results in a variety of cases, and is very safe if performed appropriately (eg Borody). This seems the only sure-fire way to completely replace the problematic gut bacteria with healthier strains, thereby correcting the root of the problem.
Is your resistance to this approach based on the 'yuck factor', or the scarcity of clinics offering this procedure? Both valid reasons of course
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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Thu Sep 13, 2012 5:10 am

@Vesta: My neck veins were opened completely in January 2011 after several procedures. I had stenoses in the left (90%) and right (>90%) IJVs and an Azygos that was 50% blocked. Other veins such as the Ileac were also checked and were found to be ok. A number of symtoms have disappeared since, in particular numbness of hands, it is quiet in the head... But the process of progression has not stopped. The cause is in the gut and it is a diabetes related neuropathy, this thread explains...

I take no sugar or 'fructose' drinks anymore (try my best..), not too much fat either. I do not use vitamins, mineral supplements etc. because I am convinced that if your gut flora is not right, they will not be absorbed anyhow; and if you gut flora is right, the body will take what it needs from the food anyhow. Look at the horses in the meadow, they eat only grass and are perfectly healthy. Or the cows that produce 40 liters of milk each day, just from eating grass.. I am convinced that damaged cells will heal in a healthy body. May be not everything because some damage will be irreversable, where young people will have more regeneration capacity..

@erimus: You are right about the fecal transplantation. Just a few weeks ago, I met with this doctor in Amsterdam who carried about one hundred fecal transplantations by now, for diabetes. It is definitely an option (although not allowed by 'regulatory procedures in the Netherlands' for MS; Vesta, see here is a political problem), but risks on the long term are not exactly known or understood (to get maximum effect, the new feces should be 'as foreign as possible' ...). I suppose there is generally risk for medication too, including for new diabetes2 medication (just saw several diabetes medications that were taken from the market..).

I have understood that metformin and glimperide have a very good safety profile and my farther (he has diabetes 2) takes these medication already for well over 10 years without any problem, so this is my preferred option for now..
Last edited by Leonard on Thu Sep 20, 2012 7:15 am, edited 1 time in total.
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Re: A new concept for MS [I think I found it: This Is MS]

Postby vesta » Fri Sep 14, 2012 7:50 am

Leonard: Thanks for answering my questions. When I "healed" in 1984-85 my gut was really "rotten" and I was treated by a kinesiologist/nutritionist who used Standard Process supplements (USA) and diet to clean it up. I was much younger of course and in what I call the wet "spongy" stage where the lesions haven't dried up and the myelin or whatever can recover, which it did after a year of de-tox and optimal nutrition. Then I moved to France and went off the diet and was very stressed which set me back. January this year I at least stopped eating wheat and upped the raw veggie juice and am feeling better overall, but every morning I give myself a TENS self acupressure treatment to get the blood flowing. I wake up depressed and know it is because the blood is "stagnating" and needs to get moving. And recently one evening I was very upset and woke up the following morning with the muscles cramping my "good" left foot which is a bad sign. So I treated myself with the TENS which I should have done before going to bed. Every time I have the slightest symptom now I know some damage is being done, I need to do my best to get the blood flowing and hope I can control a very slow decline for the rest of my life. The doppler ultrasounds of the Jugular and vertebral veins were normal and I was told the azygous would be normal as well, so I'm not going to seek out angioplasty. I believe my form of CCSVI involves a narrowing of veins or disruption of blood flow which can be manually treated, and that toxicity (eg glutens, coffee, grief) tenses up the circulatory system enough to reflux the blood flow. I never took MS drugs. So if you have a health condition which tenses up the circulatory system this alone may account for your continued progression (and I'm not discounting your analysis of diabetes etc.)
By the way, resistance to new thinking on MS is a good example of the Semmelweis Reflex ""a metaphor for the reflex like tendancy to reject new evidence or new knowledge because it contradicts established norms, beliefs or paradigms." Better yet try Dr.Timothy Leary's definition in The Game of Life "Mob behavior found among primates and larval hominids on undeveloped planets, in which a discovery of important scientific fact is punished."( Quotes from Wikipedia) It took at least 20 years for Doctors to admit they should disinfect their hands before administering to their patients. I don't have 20 years to waste, do you? Here's the story of Ignaz Semmelweis, father of antisepsis. (mostly from Wikipedia)"
See my entry of Aug 6, 2012 "CCSVI MS and the Semmelweis Reflex" (Dr Sclafani sent a photo of an ancient Egyptian birthing clinic sculpted wall)
By the way, even animals fall ill when stressed. After the destructive storms of Dec 1999 (date ?)in France which destroyed barns the cows were so stressed they developed TB which meant their milk couldn't be sold.
You might consider treating intestinal parasites as well. There is a Standard Process "natural" product (papaya etc) called Zymex II which dissolves the walls of the "bug" eliminating it. I've been reading the Dr Sclafani thread to get more info, and at one point he speaks of a mass of veins leading off the spinal cord (I need to relocate the quote). Isn't it possible that other smaller veins than the jugulars etc can be implicated in CCSVI? Anyway, thanks again for your responses. Vesta
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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Fri Sep 14, 2012 10:06 am

There has always been resistance to change and there will always be. It is the inertia in the system, that is not unique for the medical sector. For the auto-immune view on MS, the weight of the entrenched status-quo was immense. For a long time, any new initiative or idea launched was at risk to collapse beneath that immense weight (just think of ccsvi). But that is now of the past, change will come...

This new publication is groundbreaking! It is highly disruptive in that it promotes an entirely new approach to MS and – the importance of that can not be overstated - it comes from within the sector. With this publication, the ranks in the neurology have definitively broken, from Moscow to London, from Bamberg to Ottawa.

http://www.ncbi.nlm.nih.gov/pubmed/22936203


We are on the right track, there is no way back. There is only one way and that is the way forward…

There is now work to do for the medical sector together with the governments to make this all happen, to enable the new vision of future MS care.
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Re: A new concept for MS [I think I found it: This Is MS]

Postby erimus » Mon Sep 17, 2012 3:26 am

Thanks for posting this article. I've read it and am interested in what will happen next. Do you know what the next steps are to translate the proposals into actions? How much influence will it have to get things changed?
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Re: A new concept for MS [I think I found it: This Is MS]

Postby jimmylegs » Mon Sep 17, 2012 9:54 am

full text @
Future MS care: a consensus statement of the MS in the 21st Century Steering Group
http://www.springerlink.com/content/l04 ... lltext.pdf
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Re: A new concept for MS [I think I found it: This Is MS]

Postby Leonard » Tue Sep 18, 2012 1:04 am

@erimus: right questions, wrong person …

I can not oversee the landscape of the medical sector, pharmaceuticals, governments and patient representations including the dynamics of Internet fora from my position. Something unexpected may happen tomorrow that changes the face of this whole problem area in one instant. This makes it very difficult if not impossible for me to make any predictions at this point on outcome or speed… The only thing I can say with confidence is that things will change...

@jimmylegs: thank you for posting the link to the full article.
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