Fraudulent CCSVI study? Self-interests against negative data?

We are about to get reports of CCSVI from ECTRIMS.
Trials are beginning to get going and one can sense that there is controversy looming. Will the establishment and the MS community accept the results positive or negative and move forward? Maybe a taster of things to come from ECTRIMS this week is this abstract

Endovascular treatment of chronic cerebro-spinal venous insufficiency in multiple sclerosis: a retrospective study
R. Alroughani, S. Lamdhade (Kuwait, KW)

Background: Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) has been proposed to be associated with Multiple Sclerosis (MS). Zamboni et al reported significant improvement in neurological outcomes in MS patients who underwent Percutaneous Transluminal Angioplasty (PTA).

Objectives: This retrospective observation study evaluated the neurological outcomes in MS patients who underwent PTA.

Method: Patients with clinically definite MS who underwent PTA in the last 2 years were assessed. Patients chose to undergo the PTA outside Kuwait voluntarily and not under any study protocol. Patients aged between 18 and 60 years who have relapsing remitting (RR) course and completed at least one-year post-PTA were included. Adherence and discontinuation of disease modifying Therapies (DMTs) were assessed. Patients with clinically isolated syndrome or progressive forms of MS and those with incomplete data were excluded. The primary endpoint was the proportion of relapse-free patients at one year. Secondary endpoints were change in mean EDSS score and proportion of patients with new MRI activity (defined as either Gadolinium-enhancing or new T2 lesions) at one year.

Results: Forty-two patients satisfied the study inclusion criteria and their pre- and post- PTA clinical and radiological data were analyzed. Females constituted 73.8% of the cohort. The mean age and mean disease duration were 34.02 and 7.31 years respectively. At one year post-PTA, the proportion of relapse-free patients decreased from 85.71% to 66.67% (p = 0.071) whereas the mean EDSS score increased from 2.90 SDยฑ1.64 to 3.24 SDยฑ1.86 (p =0.377). The proportion of patients with new MRI activity increased significantly from 16.67% to 42.86% (p = 0.016). 35.71% of patients stopped their DMTs. There was no difference among the patients who stopped or continued their DMTs with respect to relapses (p=0.734) or new MRI activity (p=0.517).

Conclusion: The study revealed that PTA in relapsing remitting MS patients was not associated with any neurological improvement. However, there was an increase in disease activity evident by MRI parameters irrespective of the adherence to DMTs. Given the safety concern of this small observation study, further evidence of the association between CCSVI and MS is required prior to the institution of PTA in clinical trials.

Based on this it is clear that there is no evidence of efficacy and worse still it suggests that disease activity is worsened. If the procedure was that great as some people say then it should not be hard to see benefit. The prospective trials will shed light on this but the future would not look bright. This is however only n=42 what happens when we increase this 10 times. 

However, in the interests of balance I thought I would see what our Mate Joan from CCSVI central ๐Ÿ™‚ made of this. It bothered me what I read as there was a implied suggestion that this was fraud and this is coming from CCSVI-supporting Doctors.

So first was a post linked to comments from the Hubbard Foundation .

This was set up by a protagonist of CCSVI, David Hubbard who also has a BLOG and was reporting on CCSVI at ECTRIMS 2012

Reviewed by David Hubbard MD, Hubbard Foundation
Very brief summaries of each abstract are presented below. First we summarize the highlights:
There is an abstract from a doctor in Kuwait reporting that patients were actually worse 1 year after treatment. Here is an email to me from Tariq Sinan MD, the lead author of the work referred to in this abstract.

Oct 1, 2012
Dear David,
Absolutely. you can forward my emails to anybody you want.
Furthermore his poster is not just repudiated. its illegal. he did not get permission neither from all investigators nor from the Kuwait research authorities. All papers and results have to be approved by them. same paper was rejected from ANM after we wrote to them. The author in his poster is not even part of the study team. Dr. Alrougani met less than 30 % of patients once only. the rest of the patients refused to go to him because they thought he was biased. We used another Neurologist. its now more than 2 years since we started the study. 70% of patients feel they have benefited from the procedure. 1 patient got worse, he got thrombosis in one vein and the neurologist thought he got worse because he stopped Tysabri suddenly. We hope our 2 yrs follow up prospective study will be out soon.
Best regards,
Tariq Sinan. MD Kuwait

Hubbard Site said

Thirteen of the 21 abstracts were ultrasound studies and predictably were negative, inconclusive, and/or repetitive. I think we have all learned that ultrasound is not able to provide diagnostic criteria for the hypothesis of chronic cerebro-spinal venous insufficiency, and internal jugular ultrasound will not help us understand what is happening in the small veins of the CNS white matter where MS lesions occur.
Alroughani and Lamdhade. Kuwait (not Sinanโ€™s group)
42 MS patients had venoplasty and were signicantly worse at 1 year by relapse rate, EDSS score and MRI .

The inference is clear that the data in the ECTRIMS abstract is fraudulent. Then it appeared that an abstract had been submitted previously by the Same Authors at American Association of Neurology meeting and withdrawn. This time the letter was from a different person


[S10.007] Endovascular Treatment of Chronic Cerebro-Spinal Venous Insufficiency in Multiple Sclerosis: Preliminary Data from a Prospective Open-Label Study Raed Alroughani, Sulaiman Al-Khashan, Shekhar Lamdhade, Kuwait

We would like to bring to your attention that the abstract above was submitted by Dr. Raed Alroughani from Kuwait and is fraudulant and not legal due to the following reasons:-

ยทDr. Raed Alroughani submitted the paper without approval of the national research committee from ministry of health of Kuwait. Also without approval of the primary investigator Dr Tareq Sinan. Dr. Raed Alroughani was invited the study late and not the main neurologist involved but Dr. Sulaiman Al-Khashan is the main neurologist involved in the study. Dr. Raed Alroughani did not follow up all patients because was biased toward not having the procedure and was in favor of medical therapy of MS.  He only saw 25 % of patients in his clinic for follow up. Dr. Raed Alroughani never met with the group investigators (Dr. Tariq Sinan, Dr. Hussain Safar, Dr. Muzaini and Dr. Sluiman alkhashan, and the ethical and the research committee from the ministry of health) to discuss any results. Dr. Raed Alroughani send the abstract without even receiving approval of his colleague neurologist Dr. Sulaiman Al-Khashan. Dr. Raed Alroughani was objecting from the start regarding the CCSVI procedure from the beginning and he had in his mind a plan to stop the procedure early and to write against it
This abstract is fraudulant and immoral .

For your information, all the committee agreed that we should continue to follow the patients for 2 years due to the fact this neurologist was not willing to follow up these patients properly.

I think this matter should be raised to the higher committee of the American Academy of Neurology.

Thank you,
Dr. Hussein Safar

Consultant Vascular surgeon

 Alarm Bells were ringing and again it appeared that Fraud was being claimed. Should I alert ECTRIMS organisers?, as this publication is clearly going to be controversial. I thought that I would investigate this and here are my letters to the Author of the Abstract and the alleged person claiming fraud and their responses 

Dear Dr Sinan
I write to you regarding a letter attributed to you on the Hubbard Foundation website, concerning an abstract R. Alroughani, S. Lamdhade (Kuwait, KW).

I can see you are not an author on the manuscript, but are you alleging that the data as presented is incorrect and fraudlent? That it was not presented by the Kuwaiti authorities I think is a separate issue about whether the information as presented is correct.

Any light you can shed on this is important as the data have interest to the MS community and your concerns about it are also public.

The response is
“This poster presented is illegal because it does not have Kuwait Authority approval which is a pre condition by Kuwait Authority who originally approved the study with (similar name) with me as the principal author. Dr. Alroughani was one of 6 investigators involved. Non of the other 5 Investigators involved in the study are aware of his poster or the Data that it includes. So I don’t know if the Data is correct. But to this date I regularly follow up 90% of patients enrolled in the original study by Ultrasound and MRI. and the impression I have from the patients and Imaging toltally contardict Dr. AlRoughani conclusion. We have to see the final results when the official Kuwait study is published. so, what is your point ? The fact that he choosed to not include my name and use some one elses name from outside the study group is an unaccepatable action which was challnged before and now he has to answer to Kuwait research Authority.
Best regards,
Dr. Tariq Sinan”

Therefore, whilst it is suggested to me that Dr Sinan believes that protocol has not been followed in Kuwait and that he believes that he should have been included on the report in the study, he does not know what the actual data is. There is clearly a clash of personality and perhaps sour grapes. The impression is that the conclusion may not be right but does not go as far a explicitly stating that the data is falsified but not far off. This is a serious thing for health care professionals to be making in public. Likewise Dr.Sinan had time to prepare data that would clearly counter the claims being made. The studies are not blinded, so ideally opinion should be more than an impression.

We all get left off papers that we think we may be on. That’s life. However, you take it on the chin or deal with the author. When you find out and if it pisses you off, then it only happens once as you do not work with the offending person again. You send the paper out to all authors to comment before you submit, If a potential author disagrees with the content then they can remove their name from the paper. If they do not give approval their name should be removed from the study. Sometimes you get on papers you may not have expected. Whining in public is not the best way to deal with it.
Maybe these are allegations that deserve action and appear to be occurring. It seems interesting that you have to ask your National Government to present data, it certainly does not occur in UK and could be anti-academic if the results were political and Governments tried to stop you publishing, which in this case I doubt it. As this is the second time this type of story is being aired, surely the Government would have had time to address this issue if it was of importance. It seems as if investigation is underway

Anyway now on the the other party.

Dear Dr Alroughani
I write to you regarding your presentation Endovascular treatment of chronic cerebro-spinal venous insufficiency in multiple sclerosis: a retrospective study R. Alroughani, S. Lamdhade (Kuwait, KW) to be presented at ECTRIMS

I have read on the internet a letter attributed to Dr Sinan on the Hubbard website and there is another attributed to Dr. Hussein Safar (CCSVI faceook) which imply your results are fraudulent. I wonder if you would care to comment on this as the issue.

The validity of CCSVI is of immense public interest and the public critisism of this work and and contents clear deserves some reply.

So now for the reply the attachments were sent

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

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
I think this seems a rational response and therefore it would appear that the Hubbard Foundation and elsewhere should have done a lot more due diligence before making accusations and asks questions about their impartiality and professionalism. Maybe we should write to David Hubbard?. If you look on his webpage on website, we can see the research interest of David Hubbard is in lie detection and truth verification. Maybe a self fMRI scan would be in order.

Maybe we should investigate potential conflict of interests?.

However, there are often two sides to a story and the reality may lie somewhere in between. As to whether CCSVI worsens MS, there are other reports you could dig up that may argue otherwise. As Mouse Doctor2 has pointed out 35% of people stopped taking their DMT, because they presumably thought that venoplasty ws the cure. So the fact that some people start to relapse after stopping DMT therapy may not be surprising and could this largely account for the observation of worsening. The trials are starting the data will be out one way or another, but my concerns are that those with a vested interests may not want to hear as CCSVI is a profitable industry to some.
In regard to the first AAN abstract it appeared that Dr Sinan was the principal applicant and Dr Alroughhani was a co-applicant. There were two teams one interventional radiology/vascular surgery and the other lead by Dr Alroughani was the neurology team. The Neurology team had safety concerns about increased disease activity and because of failure of the other team to engage, safety concerns were raised. The AAN appear to accept the explanation.

This is work is clearly a Hot Potato, I will leave you to deliberate what you think is and who you think was reasonable. Claiming fraud is a very big issue, just because you do not like the results or the people. Being blinkered to the reality is likewise a problem and so one has to be careful what you read and believe. This is the moral of the story

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  • "The Neurology team had safety concerns about increased disease activity"

    How does this manifest itself ? and why or how would having treatment for narrowed veins or faulty valves exasperate their MS ?
    I would be really interested to learn the connection.

    Thanks in advance,

    Regards Andy

  • What a great piece of detective work.
    Hats off to Mouse Doctor!
    It would appear that there are a lot of dubious characters with vested interests trying to suppress data that impacts on their ability to perform what is at best an unproven procedure.
    I would think that some sort of investigative journalism on this whole topic is appropriate.

  • "How does this manifest itself ? and why or how would having treatment for narrowed veins or faulty valves exasperate their MS ?"

    This would be explained by the fact that 35% stopped taking their DMTs (in the hope they would be miraculously cured by the procedure) and so some had relapses (as detected by MRI) that they would not have had had they continued taking their DMTs.

  • comments are open – is that deliberate?

    No my mistake. As we have had a number of comments Prof G has suggested leaving it open for the time being.

  • "Why or how would having treatment for narrowed veins or faulty valves exasperate their MS? I would be really interested to learn the connection".

    Linking procedures to adverse effects is not always easy. e.g. Why do some people taking lemtrada get autoimmunities? Whilst it is hard to think of a link, but not taking DMT is an obvious place to start. What were the DMT a first generation or a second generation DMT. You go to the meeting at ECTRIMS and ask the presented so that when they write the work-up there may be some discussion.

    Likewise, I am sure other readers out there will be asking how does a treatment for a condition that is an artefact have any clinical effect?

    If there is a proven benefit or side effect we will need to work out why.

  • this story was already known to me, when AAN conference was held. Supposedly, the neurologist was funded by pharmaceutical industries, to submit fraudulent work at AAN. ECTRIMS is a bad place to learn about CCSVI, as only a few studies published, most selected based on interest. CCSVI is a problem for msers, because we do not trust or the opinion of neurologists or the vascular medical opinion. too much conflict of interest in both cases. the only solution left is to act and try to do everything possible to stop this disease. A few months ago, you said that the study of Copaxone after TYSABRI was unreliable because doctors were influenced by the pharmaceutical teva. those same doctors recently published a paper negative for CCSVI. all lies. money always wins, and we always lose. the vascular component is irrefutable in multiple sclerosis. sorry for my English. alvaro.

  • Profs,

    Ccsvi is a scam.

    If real medicine had provided effective treatments, the we'd never have heard of ccsvi.

    I'd rather you focus your attention on getting highly effective treatments available to patients – this includes neuroprotective agents and repair agents. Ccsvi will die away. It's the slowness of the researcg world which has allowed these scams to flourish. In the second decade of the 21st century the researchers should have made much more progress than they have. EAE is the main culpret for the limited progress to date.

  • To Anonymous 1.25 pm. You may well be right that CCSVI is a scam, that's my personal opinion too, however, many MSers are paying significant amounts of money for a procedure that has not been validated. The purpose of the CCSVI posts is to present the data to patients who can make up their own minds to lighten their wallets or not. It's just a small part of what we report on.
    Our research focus IS on neuroprotective agents etc and hopefully getting these available to patients as soon as we can.
    regarding your EAE comment, it is true that many studies have been of limited or no use BUT there are realistic EAE studies (such as our own, no false modesty here) which are definitely moving things forward, so let's not throw the baby out with the bathwater!

  • Moving slightly off piste, I would appreciate your thoughts re The Possible Role of Cranio-Cervical Trauma
    and Abnormal CSF Hydrodynamics
    in the Genesis of Multiple Sclerosis paper by Raymond V. Damadian and David Chu.

    No need to tell you who Raymond v. Damadian is I'm sure.

    The first important observation of this study of eight MS patients was that every MS
    patient exhibited obstructions to their CSF flow when examined by phase coded CSF
    cinematography (cinรฉ) in the upright position (Table 2A, col. 10 & 13). All MS patients
    exhibited CSF flow abnormalities that were manifest on MR cinematography as interruptions
    to flow or outright flow obstructions somewhere in the cervical spinal canal,
    depending on the location and extent of their cervical spine pathology. Normal examinees did not display these flow obstructions

  • Supposedly, the neurologist was funded by pharmaceutical industries, to submit fraudulent work at AAN

    Please read the post because this shoot from the hit type of comment is part of the problem

    You do not trust the establishment please vote on the survey.

  • I'd rather you focus your attention on getting highly effective Focus on treatments available to patients – this includes neuroprotective agents and repair agents.

    This will be Prof Gs job.

    "EAE is the main culprit for the limited progress to date".

    Blame the mouse etc…when surely you need to level this at Doctors and Pharma. It is Doctors and Pharma that decide where to put their resource. A poor worker blames his tools.

  • Andy, Dr Zivadinov has new data that show CSF flow improvement after angioplasty.

    One problem with anti-CCSVI critisism is that everyone talks about the "treatment" as if the full span of possible vein abnormalities as well as the best and safest way to treat them is written in a book and taught to all interventional radiologists. This is wrong. There is a learning curve that most experienced IRs raise it to as much as 200 procedures.

  • No need to tell me who..
    Raymond V. Damadian and David Chu are

    I'm terrible with names who are they?

    They had paper Physiol Chem Phys Med NMR. 2011;41:1-17. It missed the radar last year. I have not heard of upright MRI But no need to comment you have done this already.

  • One problem with anti-CCSVI critisism is that everyone talks about the "treatment"

    This post is not about treatment but the way that posts are perceived and disseminated.

    Do you (vv) honestly believe that this is the way to go?

    Anything that you do not like, you label it is Fraud. I think that we should be able to agree that this is not the way to go.

  • It's ok I don't mind.
    Raymond V. Damadian was the inventor of the MRI scanner, the diagnostic tool of choice for the discerning Neurologist I believe.
    Anyway to cut a long story short, they have now invented an upright MRI scanner and the paper published last year is clearly showing obstructions to CSF flow in the MS people tested and none where normals were concerned.
    I don't want to get involved with your scam arguments, I just thought if the guy who invented MRI can see differentials then it would be worth a read.

  • It does appear Prof G did look at the abstract of the paper and used the fact he hadn't seen the full paper and the fact that the upright scanner was specialist to skirt round the obviously monumental paper. If Prof G could spare some of his time to have a look at the full paper, I'm sure it would be welcomed by many.

  • OK you can wait to see if Prof G has words but it seems unrelated to the content of the survey.

    If you feel we have to do something first before you do anything please feel free not to do anything, as we are not trying to buy a response.

    I am not an MRIer and so have little expertise. There is an inference of vascular changes within the brain. This is not surprising if cells are leaving the blood and entering an inflamed CNS and the vascular is a site of lesions.

    I don't think it has anything to do with valves and neck veins. Maybe there are expert readers who can give an opinion?

    The article is open access so you can all read it.

  • Interesting that if you look at the research interest of David Hubbard from the Hubbard Foundation, who caused me to start the quest. His interests are lie detection and truth verification. Maybe a self fMRI scan would be in order ๐Ÿ™‚

  • Re "obviously monumental paper"??
    My first reaction to the paper: These people hope to sort of replicate what Zamboni did. Get MSers interested in the idea of cervical trauma and CSF flow abnormalities in order to sell their upright MRI machine

  • Well I guess we'll have to disagree where we go next, suffice to say there isn't a timescale to research, as I'm sure you're aware. This approach to solving some of the questions raised by MS will go on for a while yet and I doubt will be finalised by the Canadian trials or a survey on this blog page.
    Anon looking to sell their machines ?, try reading and educating yourself of the importance of MRI scanners in diagnosing MS and the advances that have been made in this area, over the past decade.
    As I have said there is no time limit to research and there is some interesting work being carried out in NY re csf flow, so we'll wait and see if this can yield some answers, especially for people with Primary Progressive MS, where there is little comfort to be found in the research of the last 30 years or so of the 'Mouse Model'.

    Regards as always, catch you later. Andy Clarke.

  • Thank you Andy Clarke for that link, "cerebral vein changes in relapsing-remitting multiple sclerosis.." Most interesting. Studying veins is so important in MS, it should be.

    Im not a researcher, but following quite eagerly this deabate of CCSVI. Im sure that the final result is that PTA will be routine treatment for CCSVI. In my wife's case it changed totally her situation. Its now almost 2,5 years since her narrowed jugular was operated and today she is symptom free, exercising very hard. There were many symptoms in her list: fatique, balance, spasticy, cognitive, weakness etc. Even her neurology noticed that her reflex tests became normal. Needles to say how happy we are about results.

  • This is great news and shows us that if the effects are so easy to spot the trials cannot fail to show an effect they we will have an answer

  • Whilst this is not meant to stir the ire of PPMSers Why is it the fault of the "mouse model"?

    I have seen very few papers over the last 30 years where they claim they study is anything for or about primary progressive MS. This because this was not the focus of the work. You can blame the scientists for this or maybe the funders who help direct the work
    but you need to look elsewhere than the mouse as the reason for this

  • Annonymous – That is my issue. Why haven't these neuros tried to find a CURE for MS? And someone said here that CCSVI hasn't been validated. Excuse me??? The 'autoimmune theory' in MS has never been validated either. Neuros and BigPharma control this whole 'autoimmune theory' and anyone who tries to argue with that is living in LALA Land. All neuro- logists do is test drugs, drugs and more drugs – testing that, of course, BigPharma pays for, which again, means a lot of salaries are looked after. But that is NOT looking after MS patients or wrorrying about a cure. And I won't even discuss the # of people who've died from these 'immune modulating' drugs, or who've been very seriously ill – many more than from a minor 45 minute vein procedure. MANY, MANY more.
    MouseDoctor – I might fill out your form if you had the guts to tell us all who you were and what makes you such a pro.

  • Have just put some posts to spam as it only goes to confirm the rubbish that some blinkered people spin.

    "what you are not doing to find a cure and making MS patients iller will happen"

    I do not treat Ms read, think before you write.

    "CCSVI has helped too many and you have never been right yet"

    I think not and this is not about how many people CCSVI may have helped but the practise of placing dubious information on websites. You will want to through this back at us, but don't waste our and our time.

  • "Why haven't these neuros tried to find a CURE for MS?"

    Maybe you do not read the BLOG, it may help as the post today would address your point

    "I wont even discuss…" Good, I am glad you won't discuss it is not relevant to this post.

    "MouseDoctor – I might fill out your form if you had the guts to tell us all who you were and what makes you such a pro".

    I think most people that know me will say I have the guts..boy do I have the guts, but do your homework, you are being lazy!

    Pro = a professional but in the context of this post you only need eyes and the ability to read. You can then you make your own mind up what is reasonable and what is not.

  • erkki said…
    Thank you Mousedoctor. I have been in contact with quite many operated people and I have noticed one thing about effects after PTA.. and it is about timing of procedure. It seems to be more effective with those whose dx is not so old. For example this woman from Sweden got her MS dx about same time as my wife and was treated also same summer and even in same clinic. This video is quite impressive:

    So, maybe vein occlusion should be treated early.. before some nasty things happen in brain. Besides my wife, and Lena (in this video) I know others who have been treated some years after dx and results have been absolutely wonderful. Of course this is not science ๐Ÿ™‚ But we need more science and research.. and working together to find answers, and more treatment options.

    Dear Erkii whilst the video may be quite impressive and I was going to ask our Team G native Swedish speaker to read it, unfortunately it ended with details of a CCSVI clinic and so as and advertisement it has to go so seven minutes of interesting video made meaningless by the plig.

  • erkki said…
    Thank you Mousedoctor. I have been in contact with quite many operated people and I have noticed one thing about effects after PTA.. and it is about timing of procedure. It seems to be more effective with those whose dx is not so old. For example this woman from Sweden got her MS dx about same time as my wife and was treated also same summer and even in same clinic. This video is quite impressive:

    So, maybe vein occlusion should be treated early.. before some nasty things happen in brain. Besides my wife, and Lena (in this video) I know others who have been treated some years after dx and results have been absolutely wonderful. Of course this is not science ๐Ÿ™‚ But we need more science and research.. and working together to find answers, and more treatment options.

    Dear Erkii I was going to ask our Team G native Swedish speaker to read it, unfortunately it ended with details of a CCSVI clinic and so as an advertisement it has to go. So seven minutes of video made meaningless by the pointless plug.

  • Sir Mousedoctor,

    Ok, I understand removing that video, cause there was the name of clinic. That wasnt idea just to show how impressive results can be.. when treated early.
    About my wife's situation after PTA. I was also wondering that could this be placebo, cause change in her energy level grow quite immediately after PTA, it was so incredible. But then after one week she lost the benefits (fatique, spasticy, weakness in her right side..) and after one week she got depressed and me too. This lasted about two weeks, until one day her condition improved and symptoms vanished.
    She got back her enjoiment with sports cause fatique disappeared and weaks side became normal. Now she has trained with weights hard and believe it or not, can do perfect squat with 80 kilos – not bad for family mother with MS dx ๐Ÿ™‚
    Im still convinced that her PTA done early, was the best possible solution, it changed situation totally.

    – Erkki

  • A lot of people are convinced that PTA is of benefit. This is why the trials are going ahead. All we have been asking for is the same type of evidence that is asked for any drug.

    I'll leave G to talk about placebo effect and explain it once the trial results occur

  • Great discussion. I am sure this blog created a lot to think about those who are trying to sell CCSVI and increase their pocket money and at the same time accusing the neurologist to be paid by pharmaceutical !!

    I am going to respond anonymous (Monday, October 08, 2012 12:54:00 PM)

    It seems that some people can not differentiate between disclosure and funding !! When a doctor provide disclosure about speaking fees or advisory boards; this does not mean the study was funded by those pharmaceutical ! Funding is different, which mean direct money to the study. The authors clearly indicated the study was not funded at AAN but provided disclosures which actually shows how ethical those guys are. They could easily day nothing to disclose.

    I am surprised that no one had talked about the misleading information Dr Sinan provided through his email. He clearly did not read the abstract and yet, the CSSVI sup

  • Yes of course, trials are very important and it is just common sense that bloodflow / perfusion is very very important in CNS. So far open clinical trials have showed that about 50-70 % operated people have felt benefits or relief with symptoms, especially fatique. Next logical steps will be plasebo-controlled studies, which are now going in Italy and USA.

    Maybe new techniques for measuring the flow and CCSVI are needed, more not-operator dependant. Very interesting one is "plethysmography", which have shown clear difference with flow between MS and controls.

    Results The mean hydraulic resistance of the extracranial venous system was 10.28 (standard deviation [SD] 5.14) mmHg.s/mL in the healthy controls and 16.81 (SD 9.22) in the CCSVI patients (P < 0.001).

    Conclusions The haemodynamics of the extracranial venous system are greatly altered in CCSVI patients.

  • Sometimes technology creates the problem.

    Do we need road charging by GPS in cars….. a technology without a need
    If you drive more you use more gas/petrol and pay more tax.

    If you have GPS in cars for road charging you next get speeding fines because you can't get from A to B that fast doing the speed limit.

    We seem to be desparately trying to generate a technology to monitor blood flow. will this make people more money? ๐Ÿ™‚

    PS I agree few we have yet to hear whether you think Dr Hubbards and Sinans actions were correct to do.

  • Hi Erkki,

    I totally agree, it will be modern imaging techniques that will reveal the true extent of compromised blood and csf flow and not on the pages of a blog.The advances being made are at a breath taking speed, thinking of upright MRI and viewing images in real time. Ultrasound has clearly been a useful tool, but the cutting edge technology being used by some will really make Doppler Ultrasound look dated. I really do believe and have said many times, the difference of opinions will be solved by imaging.
    BTW, I like your ref to the ONE study which claimed re-hydration made the difference,perhaps MS is a simple as people not drinking enough, smoking too much , oh and any other variable you would like to throw in there.

  • Well, there seems to be lots of new studies and connections related to CCSVI, like this "drinking water doppler study" ๐Ÿ™‚ Ok, I quess more interesting study was about cerebrospinal fluid flow, which seemed to correlate with venous flow. This flow thing is in my opinion very important piece and research should answer how it fits to puzzle. This is interesting direction, and Im very confident that is is very very important direction.
    My wife tried interferone treatment and it really made things just worse. PTA done in 2010 summer was incredible turning point away from disease very clearly. Maybe future research give answers to question like "who will benefit most of PTA?" or "how can you prevent re-stenosis?" etc. I quess we are living interesting times.

    ps. Sorry if I have mistakes in text, english is something I have just studied.

  • You English is very good and understandable, I'll leave you guys and gals to discuss. I have nothing useful to add.

  • Thank you mousedoctor, if this would facebook, I would press "like button", maybe my english has proved lately ๐Ÿ™‚

  • Just for the record, I am not anonymous, and I am by no means a doctor of mice or men.

    I am merely a concerned citizen, and wife of a man diagnosed with MS. Because my Facebook page has been linked above, I feel I should respond. I do not understand why MS specialists are not embracing more studies on hypoperfusion, slowed cerebrospinal fluid velocity, normal pressure hydrocephalus and the enlargement of the third ventricle as it relates to pseudoatrophy and the theory of CCSVI—and why these markers might be shown to improve on MRI after venoplasty. The recent BNAC study presented at ECTRIMS showed improved CSF clearance in all 15 patients treated with venoplasty. Why is CSF flow slower in those with CCSVI and MS? Why is there hypoperfusion in the MS brain? Where is the curiosity? Why must the entire focus of MS research remain beholden to a mouse model which looks more like ADEM than MS in humans? These are the questions which need to be asked.

    My own husband, now almost 4 years past venoplasty at Stanford, has shown a reversal of gray matter atrophy on MRI, with no MS progression, no inflammation, no new white matter lesions, and reduction of the symptoms of heat intolerence, spasms, cognitive fog and fatigue. His ventricles, brain stem and thalamus are now lovely and "normal." He mountain bikes and works full days. Yes, he has remained on his DMD copaxone, as recommended by Dr. Zamboni. However for the 2 years on copaxone prior to venoplasty, he was in pain, progressing on MRI, and suffered severe fatigue. He also eats a whole food diet, takes vitamin D supplements and exercises daily. We believe his "whole life" approach has worked for him. And it has worked for others.

    Dr. Zamboni, Dr. Zivadinov, Dr. Hubbard, Dr. Dake, Dr. Haacke, Dr. Siskin–all of the International Society for Neurovascular Disease– continue to bring compelling research forward. Yet after four years of arguing and bluster, I can only ask—-where is the cooperation? Why these separate camps? The only conclusion many of us can come to, is that those in the EAE/mouse camp refuse to let go of their hold on MS treatment. Whether it is due to cognitive dissonance, careerism or financial concerns, I have no idea. But this lack of real dialogue is to the detriment of all diagnosed with this disease. And that's why I keep that FB page–"CCSVI Central" going. When you all sit down and work together to solve MS aetiology, I'll gladly go away.

  • Dear Joan
    I am happy that your husband Jeff is doing well, we are aware of your story however

    "The only conclusion many of us can come to, is that those in the EAE/mouse camp refuse to let go of their hold on MS treatment"

    If you think the EAE camp has much to do with MS treatment…think again. This has nothing to do with embracing and co-operation by mouserers in fact, I bet there are large numbers of EAEers who have not even heard of CCSVI. The clinical fraterinity are becoming increasingly sceptical through lack of hard data and are becoming wary of people who are increasingly looking like car-boot salesmen and scammers. I have not met the guys named above but would you trust Arthur Daley? ( Maybe it is unfair to tar them all with the same brush. I accept that however

    Of all the posts in response to this post so few have been about the issue at hand, which is mis-information. The comments and responses are easy to read. It always descends to CCSVI right or wrong and Bad Pharma.

    Surely the point is that information posted on the Hubbard Web site and elsewhere was clearly mis-information. The Abstract from ECTRIMS had nothing to do with the study with Dr Sinan so why was this gripe attached. Without a pragmatic and rational approach to information assimilation there never will be co-operation and blinkered people cannot see and think other than what they want to see.

  • MD2 also reminded me. When we are talking about co-operation.

    I wonder how an attempted character assassination by CCSVI central of Prof G works for that or writing to our Head of Institute trying to get him sacked or silenced is co-operative?…Unbelievable but yes this did happen.

  • Dear Professor David Baker—
    Sadly, inflammatory talk begets inflammatory talk. I had never heard of Prof. G until his very biased, opinionated and negative blog posting on CCSVI research. When there is broader cooperation between specialties, as is being modeled by the Intervenational Society for Neurovascular Disease, I will gladly step aside. Until then, I believe pwMS and their loved ones deserve to know the complete story of the EAE orthodoxy, and to understand the vascular connection from Rindfleisch to Zamboni and beyond…cerebral perfusion, Schwann cells and the endothelium.
    be well, Joan

  • sure…and just wanted to say, your work on cannabinoids is really to be commended…it's helped many. I hope you're also looking at the endothelial recepter anandamide, vasodilation and the affects on the microvascular endothelial cells. There's a connection in your work to the vascular research. Be well, and I hope this peace pipe has been accepted ๐Ÿ™‚ Joan

  • Thanks for the reference that we had missed and complement on the work.

    Believe it or not we have been working on a anandamide vascular receptor. We believe there are probably two different ones, independent of the cannabinoid receptors and vanilloid receptors

    We (MD & MD2) have worked lots on vasculature and are still working on it now including control of vascular permeability. Paper soon to be submitted.

  • You are attacking a Straw Man here (or perhaps an Aunt Sally for our friends in the UK)
    Rather than a discussion of the the real CCSVI issues and findings you are presenting an argument about whether or not a particular researcher misrepresented himself or not and who is telling the truth about that representation. This is a despicable way to try to discredit ongoing research and a procedure that is not only important but has helped so many who are suffering.

    • Dear Jan
      What Tosh. Read the posts!
      This is not discrediting the research…it does question the scientific credentials of some people in their ability to assimilate details…Does this speak to their ability to do research maybe.

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