I was asked yesterday to list what I considered to be the “hottest” research topics in MS; the following is my list:
- EBV
- Vitamin D
- B cells
- DMTs: BG12, neuroprotectants (Fingolimod and sodium channel blockers), Alemtuzumab & Anti-CD20 therapy
- Cortical pathology
- Symptomatic therapies (cognition, fatigue and spasticity)
Please note CCSVI is not on the list!
Do you think sufficient/appropriate research is being carried out in these areas?
Not enough research is being done to integrate the data on MS risk factors. We are trying to get this off the ground and have submitted a grant to the UK MS Society for a pilot study. There is a meeting next week in the US on neuroprotection trials. We have a large number of potential drugs, but don't know how to test them yet. I say that but we are involved in doing studies to rectify this; (1) we are about to start a neuroprotection trial of phenytoin in acute optic neuritis; (2) I have grant under review at the NMSS re doing a trial in SPMS (hold thumbs). A large amount activity is going on regarding the DMTs from Pharma – this is good news.Pathologists and MRIologists are covering the gray matter / cortical pathology area – this is very competitive area. Klaus Schmierer, in our group, has submitted a grant to the MRC to look at gray matter pathology. With regard to symptomatic therapies not enough research is being done; it is time for Pharma to get behind this problem.
The current Vit D research is exciting me. Do you think that eventually people with MS will be recommended to take vit D supplementation?Great to hear about possible SPMS trial!
Re vD; I recommend high-dose supplements (5000 U per day without calcium) if PwMS are vD deficient. I base this on the recommendations of the vD Council's general recommendations (http://www.vitamindcouncil.org/treatment.shtml);please note I check levels before recommending supplements.
A long list.What about repair- I thought Promise 2010 was to fund repair treatments.Not convinced phenytoin will work given results of lamotrigine.I still think we to answer the question of whether MS is a neuro-degenerative disease which leads to inflammation or an inflamatory disease which leads to neuro-degeneration.Genetics not on your list.
What might come from further research on EBV? If it's proved to be the cause, what can be done about it?As a PWMS I'd like stopping the disease to be the research priority (his will benefit all patients). Next research priority should be repair. Finally priority should be given to prevention.
Good to hear about SPMS trial – I will be crossing fingers, rather than holding thumbs 🙂
Re EBV: it depends at what stage of the disease EBV acts. If it drives disease activity we may be able to treat MS with an anti-EBV drug. If it triggers the disease (hit-and-run) then a vaccination may be the answer to prevention.
Repair is the "holy grail" of neuroscience. I prefer to manage, rather than raise, expectations; at the moment neuro-repair, for example going from a wheelchair to normal, is a long way off and unrealistic. However, the brain and spinal cord have their own repair mechanisms and it is clear that with the more effective DMTs, Natalizumab and Alemtuzumab, spontaneous improvements are definitely occurring.
‘A large amount activity is going on regarding the DMTs from Pharma’I see you’re not kidding:‘Serono settles lawsuit alleging it paid doctors to prescribe MS drug Rebif’The Swiss drug giant Merck Serono S.A. will pay $44.3 million to the US government to settle a lawsuit that charged the company illegally funnelled money to doctors to prescribe and promote their Multiple Sclerosis drug Rebif, according to the Department of Justice.A Serono employee – a California based regional business director – blew the whistle on the company's alleged payments and filed a false claims lawsuit back in 2005, according to court documents.Allegations in the court filings indicate the drug company paid a top prescriber of Rebif, often through a New York based Multiple Sclerosis clinic. The whistle-blower claims Serono company management referred to the relationship by saying, "we have a whole money laundering thing going on," with the clinic. The complaint indicates that payments to the clinic totalled more than $300,000.The Justice Department says the company paid doctors for "hundreds of speaker training meetings and programs, as well as payments for attending consultant, marketing and advisory board meetings, all at upscale resorts and other locations." The complaint alleges Serono did not notify the government of these payments."The health care of our seniors and other vulnerable citizens under the Medicare and Medicaid programs should be based upon sound medical decisions, not upon decisions tainted by influence and corruption," said Tony West, Assistant Attorney for the Justice Department's Civil Division.Source: CBS News Copyright ©2011 05/05/11The joys of pharmaceutical companies holding the purse strings of medical research….
Even though there are no words to express how much it stinks to hear of Doctors taking kickbacks from Serono, as always ‘Wheelchair Kamikaze’ has some choice words on the subject:Big Pharma Behaving BadlyPharmaceutical industry giant Merck Serano this week paid $44.3 million to settle a lawsuit alleging that the company paid kickbacks to MS neurologists for prescribing its blockbuster MS drug, Rebif (click here). The scam allegedly included hundreds of doctors, and seems to have been centered on the Consortium of Multiple Sclerosis Clinics (CMSC), a nonprofit corporation that is supposed to help educate patients. Among its other activities, the CMSC administers the quarterly NARCOMS surveys, designed to build an ever growing database on MS and its effects on patients, which are diligently filled out by thousands of multiple sclerosis patients, including, until now, yours truly. The lawsuit was brought by a former Merck Serano employee turned whistleblower, who was fired by the company after expressing disbelief that such underhanded and blatant misdeeds were going on with the company’s full knowledge and participation. The entire lawsuit document is available online (click here), and to save you the trouble, the good stuff starts on page 6. We're not talking nickels and dimes here, but huge chunks of cash, on the order of $25,000 a pop. The CMSC allegedly funneled over $500,000 to various doctors, effectively operating as a money-laundering outfit for Merck Serano, and the fact that the company settled for $44 million indicates this disgusting scam went far deeper than what is apparent in the legal document. Unfortunately, by settling the lawsuit, Merck Serano has effectively prevented all of the gory details from coming to light, as would've been the case if the suit had been brought to trial, and thus become public record. The settlement covers fraud charges regarding Medicare and Medicaid, but what of the patients that may have been steered into injecting themselves with a drug that might not have been their best choice by scoundrels in white lab coats more intent on stuffing their pockets than following the Hippocratic oath? Where is their justice? Coming at a time when trust between neurologists and their patients has become frayed due to the CCSVI controversy, the revelations provided by the lawsuit and subsequent settlement are especially revolting. It is simply outrageous that a drug company can get away with paying physicians kickbacks for prescribing drugs with what amounts to a slap on the wrist. The terms of the settlement, $44.3 million might sound like a sizable sum, but considering that sales of Rebif exceed $1 billion a year, the penalty is miniscule. Additionally, this is most likely only a quick peek under a very big rock, and it is just a glimpse at goings-on that would shock and dismay the legions of desperate patients who are the real victims of these disgusting, dishonest, and deceitful practices. Every single doctor and medical professional who received any of these tainted funds, or participated in distributing them, should be named, shamed, stripped of their licenses, and thrown in jail. They're a disgrace, each a pustule on the ass of humanity, and deserve nothing more than humiliation and degradation. Unfortunately, thanks to the niceties of a system that too often protects those in positions of power at the expense of the regular folks who rely on them, the scoundrels involved will remain anonymous, free to enjoy the fruits of their despicable actions. Despite our high-minded ideals of justice for all, far too often there is justice for none. As for those involved in this medical and legal debacle, and the many other similar cons we will likely never hear about, may their eyes fall out.(Edited to fit the maximum post length.) Read the full article at:http://www.wheelchairkamikaze.com/2011/05/big-pharma-behaving-badly-and-making-me.html
Your closed attitude to CCSVI research and treatment is a great sadness.I am still benefiting greatly from the symptom relief the treatment has given me in all of the areas mentioned on the sixth item on your list. Living with MS is truly dreadful and it’s now wonderful to not having it limiting my life in the way that it did before.
Even though there are no words to express how much it stinks to hear of Doctors taking kickbacks from Serono, as always ‘Wheelchair Kamikaze’ has some choice words on the subject:'Big Pharma Behaving Badly'Pharmaceutical industry giant Merck Serono this week paid $44.3 million to settle a lawsuit alleging that the company paid kickbacks to MS neurologists for prescribing its blockbuster MS drug, Rebif (click here). The scam allegedly included hundreds of doctors, and seems to have been centered on the Consortium of Multiple Sclerosis Clinics (CMSC), a nonprofit corporation that is supposed to help educate patients. Among its other activities, the CMSC administers the quarterly NARCOMS surveys, designed to build an ever growing database on MS and its effects on patients, which are diligently filled out by thousands of multiple sclerosis patients, including, until now, yours truly. The lawsuit was brought by a former Merck Serono employee turned whistleblower, who was fired by the company after expressing disbelief that such underhanded and blatant misdeeds were going on with the company’s full knowledge and participation. The entire lawsuit document is available online (click here), and to save you the trouble, the good stuff starts on page 6. We're not talking nickels and dimes here, but huge chunks of cash, on the order of $25,000 a pop. The CMSC allegedly funneled over $500,000 to various doctors, effectively operating as a money-laundering outfit for Merck Serono, and the fact that the company settled for $44 million indicates this disgusting scam went far deeper than what is apparent in the legal document. Unfortunately, by settling the lawsuit, Merck Serono has effectively prevented all of the gory details from coming to light, as would've been the case if the suit had been brought to trial, and thus become public record. The settlement covers fraud charges regarding Medicare and Medicaid, but what of the patients that may have been steered into injecting themselves with a drug that might not have been their best choice by scoundrels in white lab coats more intent on stuffing their pockets than following the Hippocratic oath? Where is their justice? Coming at a time when trust between neurologists and their patients has become frayed due to the CCSVI controversy, the revelations provided by the lawsuit and subsequent settlement are especially revolting. It is simply outrageous that a drug company can get away with paying physicians kickbacks for prescribing drugs with what amounts to a slap on the wrist. The terms of the settlement, $44.3 million might sound like a sizable sum, but considering that sales of Rebif exceed $1 billion a year, the penalty is miniscule. Additionally, this is most likely only a quick peek under a very big rock, and it is just a glimpse at goings-on that would shock and dismay the legions of desperate patients who are the real victims of these disgusting, dishonest, and deceitful practices. (Edited to fit the maximum post length.) Read the full article at:www.wheelchairkamikaze.com/2011/05/big-pharma-behaving-badly-and-making-me.html
What's with the censorship on the Serono topic Prof G??
Re Serono: I am not aware of all the details of this case so I find it difficult to comment. Unfortunately, a large number of these sorts of cases hinge on Industry creating the wrong kind of incentives for their staff. Sadly, this is not unique to Pharma and pervades all markets! Working in the NHS that is not a fee-for-service medical system provides some protection from this sort scandal. This is why we need to fight to keep the founding principles of the NHS in place; healthcare needs to remain free at point of access and doctors must not be paid on a fee-for-service contract.
Re CCSVI: I am not against CCSVI I am simply a sceptic based on the knowledge I have about MS and its potential cause. What I am against is PwMS having to pay large sums of money for a therapy that has yet to shown to work. At present treatment for CCSVI should only be done in the context of a clinical trial and PwMS should not have to pay for for participating in this trial.
Is this EBV research of interest?http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479
The Globe and Mail is working hard to regain its reputation. Much more balanced views on the venous theory: http://www.theglobeandmail.com/search/?q=ccsvi&searchField=keywords&searchQuery=*%3A*
did you hear that the doctors paid by Serano in New York to promote Rebif were the same doctors doing the buffalo study for CCSVI?