Dr. Alroughani responds to controversy over ectrims poster

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Dr. Alroughani responds to controversy over ectrims poster

Postby Cece » Mon Oct 15, 2012 11:00 am

http://multiple-sclerosis-research.blog ... rests.html
Thank you for your email.

I will explain the whole situation in order to clarify any points that could be raised.

I have submitted a different abstract to the AAN that included patients that were assessed by the study team in Kuwait. Dr Safar and Dr Tariq sent an a letter to the AAN with the concerns raised in the facebook website.The AAN placed a suspension till i clarified the concerns (my letter to AAN is attached). I responded to the AAN letter and finally the suspension was removed (AAN email is attached). In summary, i responded in that letter and clarified all points in a systematic manner and the AAN council acknowledged that. However, i withdrew the abstract in April since i have asked for an independent investigations in Kuwait to investigate the results after i submitted a letter to the minister of Health in Kuwait to preserve my rights after the unethical accusation to the neurology team.

The abstract submitted to the ECTRIMS is different than that submitted to the AAN. It did not include any patients who were enrolled in the original study. I have clearly indicated in the abstract that one of the major inclusion criteria was patients who underwent angioplasty outside any other study protocol. So, we included patients who underwent the procedure voluntarily outside Kuwait and these were not assessed by either Dr Sinan or Dr Safar. At least 300 Kuwaiti patients underwent the procedure inside and outside Kuwait. Dr Sinan and Dr Safar did not assess these patients because they did the study on only 100 patients in Kuwait.

We retrospectively evaluated the neurological and MRI outcomes (and not the angiographic outcomes). So, the cohort and the analysis were completely different and those doctors Sinan and Safar were not part of out study team. I think they are confused and they did not read the abstract submitted to the ECTRIMS that clearly indicated that we only included patients who did the angioplasty outside Kuwait but in fact they were my patients and i have been following them for the last years. We as a neurology team are following patients on the long term and we see the repeated relapses and attacks along with the increase in MRI activities in our patients that placed them in a great danger. We have an ethical obligation to report these safety concerns in an unbiased scientific manner.

At the end, Dr Sinan and his team are trying to obstruct any data that may raise any concerns about the safety or efficacy of the angioplasty. The reason can be easily explained. Despite that the ethics committee in Kuwait had clearly indicated to Dr Sinan that they should not do any of these procedures, they are still doing the procedure in Kuwait illegally and privately in their clinics (patients are paying between $5000-8000). They do not want any safety or efficacy results that could impact on their illegal procedure even though the patients we included in our ECTRIMS abstract were never been assessed by them.

I hope i have clarified any issues. Thank you again for your email.
Best regards,

Raed Alroughani, MD, FRCPC

What do you think? He is saying these patients were not part of Dr. Sinan's study. It was a retrospective study of patients in their neurological clinic who were treated outside of Kuwait. They did not assess angiographic outcome, so it is not known if the treatment was successful. There was no control group.
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Re: Dr. Alroughani responds to controversy over ectrims post

Postby 1eye » Mon Oct 15, 2012 5:18 pm

I think the farther you can stay away from this fracas, the more of your precious life will not be wasted.

I thought of two neologisms:
Internaut -- a person whose goal in life is to win a discussion on a blog.
Anonymotrocity -- the act of posting anonymously on a blog, words intended only to incite

I have used it in text before, but I do like to call it the Inertnet, as well.
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Re: Dr. Alroughani responds to controversy over ectrims post

Postby Cece » Tue Oct 16, 2012 8:26 am

Dr. Alroughani is not being anonymous. Do you mean the Mouse Doctor, who wrote the linked blog? I think his genuine opinion is that CCSVI is not viable as a theory, but at at least he's looking at the evidence. It's a different perspective.

Neologisms are good. Internaut especially.

I was Team Sinan all the way but then Dr. Alroughani's explanation sounded, well, reasonable up through the third paragraph. I do not condone allegations that Dr. Sinan is attempting to obscure data so that he can go on profiteering. And, yes, staying out of the fracas would be good advice; I wish there was no fracas, and that there was orderly cooperative well-funded gathering of knowledge, with multidisciplinary respect and professionalism, with the goal to be as precise as possible in the findings and interpretations. A control group and angiographic follow-ups to see if the veins remained open would have added to the precision of Dr. Alroughani's findings. The opinion by Dr. Sinan that he and patients found Dr. Alroughani to be biased makes it muddier too. I am concerned that the Canadian trials will have similar findings if Dr. Trabbalouse is similarly potentially biased although that trial design is superior with double-blinding and angiographic follow-ups.
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Re: Dr. Alroughani responds to controversy over ectrims post

Postby 1eye » Tue Oct 16, 2012 9:10 am

Cece wrote:Dr. Alroughani is not being anonymous. Do you mean the Mouse Doctor, who wrote the linked blog? I think his genuine opinion is that CCSVI is not viable as a theory, but at at least he's looking at the evidence. It's a different perspective.
...

I was frustrated by all the time I wasted reading a lot of anony-mouse postings by people with axes to grind. I know, I am worse than that sometimes, and I tend to babble, but I am at least trying.

My tendency is to think I know who "Mouse Doctor" is, when a certain quotation was said to be addressed to a certain person. I think saying he does not run an "MS" clinic may throw people off the scent, but bureaucracies have a way of shuffling people around, which may mean that he does not run one anymore. I don't know, I have not been back in three years.

People who think they can build empires on the Inertnet are liable to get blogged down.
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Re: Dr. Alroughani responds to controversy over ectrims post

Postby Cece » Tue Oct 16, 2012 2:46 pm

http://multiple-sclerosis-research.blog ... group.html
MouseDoctor
The MouseDoctor spent his academic career based at different places of the University of London . He was awarded a BSc (Hons) in Zoology from Bedford College in 1983 and was awarded a PhD from London University in Immunology/Pathology in 1987 for work at the Institute of Basic medical Science on immunological tolerance induction in delayed hypersensitivity of the skin. He then spent six years as the Angela Limerick lecturer, for multiple sclerosis research at the Hunterian Institute, The Royal College of Surgeons of England working on delayed hypersensitivity in the brain, where he developed an active research interest in multiple sclerosis. He took a 5 year Principal Fellowship to the Institute of Ophthalmology , University College London in 1994 and became the first Senior Fellow of the Multiple Sclerosis Society and moved to the Institute of Neurology , University College London in 1999. He became a senior lecturer in 2003 and got a personal chair in 2004 as Professor of Neuroimmunology. He moved to Queen Mary in the autumn of 2006.

CoI: He has founded a spin-out company to develop some symptom control drugs.

That doesn't narrow it down for me but only because I have no idea who is who in Neurology.
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Re: Dr. Alroughani responds to controversy over ectrims post

Postby cheerleader » Tue Oct 16, 2012 3:39 pm

You've got to love the google.....

Prof. David Baker
Professor of Neuroimmunology, Queen Mary University, London
David Baker spent his academic career based at different places of the University of London. He was awarded a BSc (Hons) in Zoology from Bedford College in 1983 and was awarded a PhD from London University in Immunology/Pathology in 1987 for work at the Institute of Basic medical Science on immunological tolerance induction in delayed hypersensitivity of the s kin. He then spent six years as the Angela Limerick lecturer, for multiple sclerosis research at the Hunterian Institute, The Royal College of Surgeons of England working on delayed hypersensitivity in the brain, where he developed an active research interest in multiple sclerosis. He took a 5 year Principal Fellowship to the Institute of Ophthalmology, University College London in 1994 and became the first Senior Fellow of the Multiple Sclerosis Society and moved to the Institute of Neurology, University College London in 1999. He became a senior lecturer in 2003 and got a personal chair in 2004 as Professor of Neuroimmunology. He moved to Queen Mary in the autumn of 2006. His research has spanned many areas of immunobiology including, immunopathology, cytokine biology, blood brain barrier dysfunction; myelin autoantigens, genetic mapping of disease, gene therapy and immunological tolerance induction in established immune responses. Most recently he has been involved in the understanding the involvement of the cannabinoid system in symptom control, neurodegeneration and immunity as they relate to multiple sclerosis and aims to development of agents for the treatment of chronic neurogeneration and symptom control.


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dx dual jugular vein stenosis (CCSVI) 4/09
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