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Did anyone see the programme aired on the 7/3/11 re CCSVI.
I am utterly angered by the way EHC and CCSVI have been portrayed by the BBC . Is there just narrow mindness and lack of faith out there?
Comments please !

Ashley, It was discussed in the following thread:-

http://www.thisisms.com/ftopic-15801-da ... asc-0.html

It was terrible journalism and based on a premise that Zamboni has stated there are no symptoms of CCSVI in healthy control patients whatsoever.

As far as I'm aware he's never made that claim, He's stated is noticeably less but never nil?

Unless I've misunderstood the research.

I complained to the BBC about the one sided nature of this particular documentary.

This evening I recieved the following reply, please feel free to comment:-

Thank you for your comments about our programme. I realise this is an emotive issue particularly for people who have been personally affected by MS; I would not for one moment wish to deny that your partner has found the treatment beneficial and I am sorry that you found our report one-sided. I am happy to address your concerns.

On your general point about fairness, Dr Gilhooly, the Essential Health surgeon Mr Donald Reid and Mr Vic Fernando were offered several opportunities to do a pre-arranged interview for our programme and explain why they thought the procedure was appropriate and worthwhile. Dr Gilhooly declined; Mr Fernando and Mr Reid did not personally respond to our invitation.

Nonetheless, our film featured the views of a patient who believes the treatment is worthwhile and two clinicians in Egypt who also apparently believe this.

Thus I believe our programme was fair, while representing the consensus view that the existence of CCSVI and the efficacy of treating the veins of people with MS is yet to be proven.

On Zamboni’s findings, I have to disagree with you. Zamboni found 100 per cent specificity of CCSVI to MS.

This from his results section (my upper case type):

“Selective venography demonstrated that the detection of at least 2/5 TCCS-ECD criteria of suspected anomalous extracranial venous outflow (WHICH NEVER OCCURRED IN THE CONTROL POPULATIONS) was always related to multiple significant extracranial venous stenosis….”

And in his discussion section:

“..THE ABSENCE OF DOPPLER AND VENOGRAPHIC FEATURES OF CCSVI IN CONTROLS suggests that venous obstructions may be causative of MS rather than a coincidental finding.”

You can read the full report if you like by following this link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647682/

The experts who commented on my scan felt that it highlighted the present considerable uncertainty over Zamboni’s original findings, the CCSVI diagnosis and the angioplasty procedure.

I have not been able to establish what is meant by the claim that CCSVI is recognised as a medical condition by 46 countries. I believe there are half a dozen or so countries where you can have Liberation done privately and one, Kuwait, where it is available more widely. But certainly CCSVI is not recognised as a condition by the authorities in the UK.

Clinical trials investigating the existence and prevalence of CCSVI have been carried out and were referred to in our programme; further trials are underway in the US and Canada.

I know that for many people affected by MS the issue of the cost and efficacy of prescribed drugs is a controversial one, unfortunately, it was beyond the remit of our film. Again, I am very glad your partner has found the angioplasty procedure beneficial. I would be very happy to find out more about her measurable improvements; although your GP and neurologist are best placed to feed such evidence into the official debate about CCSVI.

I am not sure why it would make things fairer in your view to feature someone who has the procedure done in the UK. It was the choice of our featured patient, Karen Lewis, to go to Egypt, and her view that the procedure was worthwhile and should be more easily available in the UK was reflected in our film.

I have not been able to establish what is meant by the claim that CCSVI is recognised as a medical condition by 46 countries. I believe there are half a dozen or so countries where you can have Liberation done privately and one, Kuwait, where it is available more widely. But certainly CCSVI is not recognised as a condition by the authorities in the UK.

Has he not heard of the Uni0n of Phlebology consensus?

This made me mad to read, the tone of the show was negative, he could at least have acknowledged that, instead it feels he is talking down to us.

I too received a reply to my complaint today and found it to be as unsatisfactory as yours is. But I was impressed that Ms Smith did attempt to address the points I made as she has also done for EJC.

She is of course completely wrong in her view and I had thought to send her a blistering reply but thought better of it.

What I think we should do is send her very thorough and detailed crits of her show in as gentle and considerate a tone as possible but dealing with all her misconceptions.

She offers to respond to further correspondence so let's give her it. Lots of it.

As a start I have begun transcribing what was said in the show so that we have somewhere to start. I will post a link to it as soon as I have done.

It is 4am in the UK. I must go to bed.

I just had a look at her profile:

http://www.bbc.co.uk/insideout/southwest/presenter/

She claims to be a bookworm and then says "I adore celebrity gossip magazines" – says it all really.

..

Dear Mr Sullivan

Reference CAS-644217-CKQGTF

Thank you for your comments. I am sorry you were disappointed with your programme. I am happy to address your concerns.

paragraphs 1. and 2.

I am not aware of any independent research which has reproduced Zamboni’s findings. I am, however, aware of research which has questioned and contradicted it. The experts I have spoken to say it is therefore too early to say CCSVI/Liberation is “verified by real science” as you suggest; they say such verification would take many more years of scientific research.

Regarding unpublished research you appear to refer to, I am sure you will agree it is not wise to rely or comment on research before it has been peer-reviewed and published in a reputable scientific journal.

On the part of a journalist, not being aware is an egregious error. I think I am aware of why you are not aware. You have ended your awareness by blindly accepting the opinions and (un)awareness of people like Dr. Colin Rose, who is not interested in awareness any more than you are. He (and by extension you) may only be aware of the "published" research because you have been unwilling to pick up a telephone and ask about the many research efforts completed and underway at this time. You probably could have started with Dr. Zamboni, and a world of information may have opened up for you if you feigned interest.

Regarding publication those very studies you mention have thrown into question the practice of peer review when publication in a reputable journal (which is not a necessity but merely a convenience for those not directly occupied in the research themselves) take an unheard-of few weeks, hinting that strings may have been pulled to rush it to publication. Talking to the principals involved in this research would not only have convinced you of their case, but would have dissuaded you from the hatchet-job you were preparing. You would have gotten a very good story.

I do not agree about the wisdom of commenting on unpublished research. It may be unwise for Colin Rose, to blog about it, but it is a judgement call that a journalist could be forgiven for making. In your case, I don't believe you have read anything, whether Colin Rose is aware of it or not.

paragraph 3.

I do not believe it is possible to say how many people have had Liberation since there is no official tally. I do not agree that the involvement of large numbers of people automatically confers legitimacy on any belief or treatment.

If you had asked the major centres doing this work you could have made a very accurate estimate. Did you ask one doctor? Dr. Gilhooley might have told you, if you had.

paragraph 4.

There was no “journalistic fakery” about our Egypt filming. Dr Tariq did not wish to be filmed operating because he is not licensed to practice medicine in Egypt. Doctors practising unlicensed in Egypt can be jailed. Your suggestion that Egypt would gratefully accept such behaviour is most surprising.

I think you may be incorrect about his reasons. You likely were unsuccessful if you were trying to stop him from proceeding, because as Egyptians have shown the world recently they are unwilling to accept oppression. Him being unlicensed in Egypt may be a bureaucratic fact, however I do not believe anyone there does not think him eminently qualified, having done all those procedures in Kuwait. I doubt he is concerned. You might ask yourself why he has not been, and will not be "jailed"

Were you aware that this procedure, although it can in many cases be done quickly, can be complex, take a long time, and in some cases cannot be done at all, because malformations can take many forms? You weren't? Well, it's a good thing he is the doctor, and you are not. I think you are out of your depth in this very technical topic.

paragraph 5.

Dr Gilhooly, the Essential Health surgeon Mr Donald Reid and the sonographer Mr Vic Fernando were offered several opportunities to do a pre-arranged interview for our programme and explain why they thought the procedure was appropriate and worthwhile. Dr Gilhooly declined; Mr Fernando and Mr Reid did not personally respond to our invitation. Since Dr Gilhooly is promoting and charging for an unproven procedure, which is prohibited by the NHS, and refused to answer our questions about it, we felt it was appropriate to approach him directly. The decision to do this was made in accordance with the BBC’s editorial guidelines and procedures. Even at that stage he could have declined to answer; it was his decision to engage in an interview at that point.

You pursued him to his car, and I am not surprised at his response to your unreasonable, childish behaviour. People may expect it of American muck-rakers, but not of the BBC, surely. A good journalist might have pursued the reason for its unjustified exclusion from NHS services. It is being denied not because some call it "unproven" (it is not) but because those people have been tagged with the label "MS" which excuses all manner of mistreatment, profiteering, and sadistic infliction of pain, until they die a horrible but merciful death at an early age?

Thank you once again for your comments and if I can help you any further please don’t hesitate to get in touch.

Regards

Sam Smith
Producer/presenter
Inside Out

www.bbc.co.uk/complaints

NB This is sent from an outgoing account only which is not monitored. You cannot reply to this email address but if necessary please contact us via our webform quoting any case number we provided.

I agree that perhaps crowd-sourcing work should be done to address specific points replied to in as many of these replies as are received. One rebuttal should suffice. My contribution is shown here.

Here is my attempt at a transcript. I was unable to make out what was said in several places. If anyone who has access to the original broadcast could check what I have written and correct it I would be very grateful.

As anyone can see the whole programme presents very well and uncritically the negative view of CCSVI. There is virtually no attempt to put the opposite argument fairly. My intention is to send Sam Smith a reasoned critique pointing out it's failings in a considerate and polite manner. I don't think anything will be gained by being aggressive. I am hoping to change her mind at least a bit.

BBC Inside Out South-East on the 7/3/11

SS: Tonight. It’s called ‘Liberation.’ A treatment for multiple sclerosis that is causing huge controversy.

Karen: There isn’t anything which doesn’t involve a risk but the biggest risk is doing nothing.

Prof John Zajicek: I don’t think there is any value in it whatsoever and I would strongly urge people not to have it done.

SS: How one NHS GP charges £7000? For this procedure
.
Scene in car park outside EHC.

Tom Gilhooly: We have something fantastic here and you will not deflect it, not one bit and your behaviour and the BBC’s behaviour is despicable.

SS: First tonight we investigate the controversial treatment being offered to people in the souththwest with an incurable disease. It costs thousands of pounds. Critics say it is unproven and potentially harmful. But for many people the hope it seems to offer has proved impossible to resist.

SS: For Karen Lewis from Devon the daily struggle to get up the stairs. Multiple sclerosis, a disease of the nervous system is gradually disabling her.

Karen: The first thing I thought was wheelchair. That’s me. That’s my life. Erm but actually what then took over was the fatigue. That overwhelming battle.

SS: The established view is that there is no known cause of MS and no cure. But the internet is buzzing with news of a radical new treatment.

Four vids of people on Youtube.

SS: They believe they have benefited from a medical breakthrough. It shows in their faces. You can see the sheer joy
.
Karen: Whilst it is out there and whilst I am capable of doing it I’ve got to try it. I’ve got to try it.

SS: But the treatment is so controversial. It is not allowed on the NHS. So Karen is paying to have it done overseas despite the serious misgivings of many experts.

Doug Brown: Going online to find out about unproven treatment can often be misleading. Some websites make claims that aren’t always evidence based and personal testimonies unfortunately cannot replace controlled clinical trials.

Prof John Zajicek: I can understand people that get desperate but there is virtually one new treatment a year that erm people get lead into and proves to be ineffective. So at the moment there is there is no evidence to my mind that this procedure and it’s explanation for multiple sclerosis are have any value at all.

SS: But Karen disagrees.

Karen: I have looked at every miracle cure, probably for the last four or five years. And there have been some weird and wonderful things. But of course you can sift them out. You know yourself what you think. What makes sense to you. Erm and this was the one that grabbed me.

SS: It’s December in Egypt. The country’s second city: Alexandria is yet to see revolution and the only liberation on Karen’s mind is the one she wants for herself.

Karen: We are going to a clinic for a scan to check to see whether I’m erm blocked basically. If I’ve got blocked veins. I am so excited. I am just I mean I’m sort of. I feel overwhelmed actually. I feel quite emotional.

SS: Karen’s liberation begins with an ultrasound scan. The treatment is based on a controversial new theory that people with MS have abnormal narrowings in certain veins which cause blood to backwash into the brain, triggering the MS. Critics say this is medically implausible but Doctor Sammy Fateh? tells Karen and her daughter Nicky he has found abnormalities and that treating them will help.

“I think soon after the operation your numbness will disappear.”
“And if there is fatigue it will disappear.”

SS: How do you feel?

Karen: I want to hug him.

SS: Doctor Fateh tells me about the incredible results he says he has seen.

“Patients they come in wheelchairs – they walk.”
“Don’t speak – they speak.”
“and balance, we have many patients who have good results.”

SS: And you have seen this?

Dr Fateh: Yea.

SS: Convinced by doctor Fatehs’s scan Karen will have an operation on her veins tomorrow.

Karen: Why I am outraged that people have to go to these lengths to get a procedure that should be available to everybody who wants it.

SS: The liberation story started two years ago. An Italian doctor, Paulo Zamboni said he’d found that people with MS had multiple vein abnormalities which impaired blood flow. He called this chronic cerebro-spinal venous insufficiency: CCSVI. Crucially he said he never found it in healthy people, only in people with MS. Zamboni then moved on to treatment. Using a catheter he inserted small balloons in to the veins of people with MS and inflated them to widen the vessels. He reported that afterwards some of the patients improved.

SS: Incredibly it seemed he had discovered a condition which only affected people with MS and furthermore that treating that condition significantly lessened their symptoms. But it is vital that such results can be reproduced by other researchers. One US doctor claimed he had found CCSVI in just over half of MS patients but 7 other published studies have cast serious doubt on the very existence of CCSVI. One says there is compelling evidence against Zamboni’s theory. It strongly discourages liberation treatment and it says some of Zamboni’s methods were not scientifically sound.

SS: Dr Colin Rose has successfully campaigned to stop scanning for CCSVI in his part of Canada. He believes it isn’t a real condition and that what Zamboni called abnormalities were simply harmless variations.

Dr Rose: He was just basically seeing a normal variation in the veins in the neck. And he just ‘pits?’ ‘pits?’ something on these MS patients and says see they got something funny. Yeah. Ah, nobody’s been able to reproduce this. Not once. Nowhere.

SS: Zamboni has always defended his research but he has also said that until there is more evidence liberation should only be done in clinical trials.

Zamboni: We need to have no doubt about the effectiveness of correcting currently venous narrowing in CCSVI.

SS: But that hasn’t stopped private clinics from Roumania to Mexico selling liberation. Thousands of people may have had it. Noone is keeping an overall check on the numbers, the results or the risks. And now liberation has come to Britain.

SS: This is the only business in the UK that’s offering scans and treatment for CCSVI. They claim they are UK leaders in the treatment of Multiple Sclerosis. Essential health sells dietary supplements and last year diversified into selling liberation. It’s web site says supporting research is needed for Zamboni’s theory but it doesn’t say that there are already scientific studies which cast serious doubt on headlines like these which the web site links to.

SS: This video features Essential Health’s liberation team. Donald Reid is an NHS vascular surgeon who carries out the procedure privately. Practising GP Tom Gilhooly runs Essential Health. He insists CCSVI is a real condition.

Video, Tom Gilhooly: Let me endorse the 47 countries have no doubt this is a new condition which has been internationally accepted.

SS: But it hasn’t been accepted by the UK government which says Liberation carries risks with no evidence of benefit.

SS: So what if the theory behind Liberation is wrong and the veins of people with MS are the same as everyone elses. Now booking a scan with Essential Health is as easy as ordering your groceries online, if quite a bit more expensive. So I’m going to have a scan.

SS: Essential Health scans people at a hired clinic in Surrey. The first step towards having the operation which costs seven and a half thousand pounds. Critics of the CCSVI theory say that if clinics like Essential Health were to scan the veins of healthy people like me they would probably find the same so-called abnormalities. Well I’m going to find out.

SS: My cover story is that I have MS so that I can be sure that my scan result isn’t influenced by the clinic knowing I am healthy and a journalist.

SS: I am scanned by the man on the right Vic Fernando. Next to him the man who trained him in CCSVI detection Paulo Zamboni himself. Zamboni remember never found CCSVI in a healthy person. His pupil however just has.

SS: Well here’s the diagnosis. According to Vic Fernando I have chronic cerebro-spinal venous insufficiency, CCSVI. He didn’t just diagnose me he recommended that I have the vein widening procedure. Later still posing as a patient I have a consultation with one of the essential health team, a GP. She said liberation was more likely than not to help me but there was no guarantee. She also conceded that healthy people could have abnormalities in their veins too. Professor Zajicek says that admission and my diagnosis re-inforce his view that liberation is a nonsense.

Prof Zajicek: That undermines the whole principle behind this view. The person that advocates this particular theory found that people with MS had a high degree of evidence for blockage in the veins and people without MS didn’t. And that was the whole basis on which he has taken this forward. Subsequently nobody else has been able to find any such relationship and there is no reason that that relationship should exist in the first place.

SS: I also showed my scan results to Ian Franklin, one of the county’s leading vascular surgeons.

Ian Franklin: You say this was scanned on a healthy individual
?
SS: Me. Yes.

Ian Franklin: Well that is very interesting. It re-inforces the concern many people have that some of these anomalies may be present in the normal population and it does, it does raise a question that it might not be specifically linked with MS.

SS: Mr Franklin doesn’t do Liberation. But he did have to operate on somebody who had the procedure done abroad.

Ian Franklin: The patient came back with a complication. The vein had completely blocked and then underwent a couple of operations to try and unblock it and deal with bleeding and complications.

Video of patient (Mahir Mostic) sitting up in wheelchair.

SS: Mr Franklin’s patient survived. Others haven’t been so lucky. This is Mahir Mostic a Canadian who had liberation at a clinic in Costa Rica. He also had small metal tubes or stents inserted to prop open his veins. These increase the risks of complications. And according to the clinic he died after a further procedure to try and clear a blood clot.

SS: In Egypt it’s the day of Karen’s operation. It’s a busy clinic. MS patients come here from all over the world. Happy, like Karen to pay seven thousand US dollars in cash. Her doctor is Tariq Sinan a Kuwaiti who flies in once a month to do Liberation. But moments before Karen’s procedure he takes me to one side. He tells me he is not licensed to practice medicine in Egypt and operating without a license is illegal here. I decide to tell Karen but Dr Tariq has beaten me to it.

Karen: He is licensed to operate in Kuwait...??indistinct??... It’s a risk I’ve got to take.

SS: Doctor Tariq doesn’t want us to film him operating so a colleague starts off. He feeds tiny balloons up into her veins and then inflates them to correct the supposed abnormalities. He doesn’t use stents. Then we are asked to leave. Karen later told me the unlicensed doctor Tariq took over at this point.

SS: Afterwards Karen feels different.

Karen: I can feel finer things. I can feel that (brushing her hand with a tissue?) I can feel that and I wouldn’t.. I wouldn’t have been able.. In fact I probably..Yeah I still can’t feel it on that hand (brushing her right hand). But I can feel that (brushing her left hand). I mean it’s insignificant really, isn’t it. But I can feel it.

SS: This is all the proof that Karen needs but there is another possible explanation for her improvement.

Dr Doug Brown: One of the complicating factors is the placebo effect where people feel better for going through a treatment process but not necessarily because of the treatment directly. Now clinical trials is ????. We carry out clinical trials because they are designed in a way to compensate for that placebo effect.

SS: But until that research was done there effectively is no evidence to justify doing this procedure on people.

Dr Doug Brown: Well that is the case. It is an unproven treatment and till this treatment goes through clinical trial it is impossible to say that it works and it is impossible to say that it works for people with MS.

SS: Dr Tariq says he is doing just such a study in his home country of Kuwait.

SS: How do you know this isn’t just a placebo effect?

Tariq Sinan: OK. Well this, this is what the neurologists say OK? Because

SS: How do you know that it is not true?

TS: Oh I will tell you how I...no I don’t know. I mean I am telling you..you are asking me..I would know with my with my studies because we have neurologists, independent neurologists. They are rep..they are looking into our results.

SS: So it might be placebo effect?

TS: Well right now it might be but if you want my personal feelings it’s not a placebo effect.

SS: But it might be.

TS: Well it was very difficult to be a placebo for someone who walks better after the procedure.

SS: And what of the clinic which offers liberation back in the UK. Essential health is based in Glasgow. They claim to have liberated 80 people at private facilities elsewhere. They don’t use stents and in a statement denied improper behaviour by anyone involved providing the procedure. The director of this company Dr Tom Gilhooly declined to be interviewed on camera and the letters that I sent to Essential Health were refused and returned so I have come to Scotland to try and talk to him.

Car park at EHC.

SS: Hello

TG: Hello - ??indistinct??

cut

TG: We applied to the NHS to do this and we were rejected. The only way new treatment..

SS: Why?

TG: Because they said it is not proven.

SS: It isn’t.

TG: Because the NHS works on.. If you work on only proven treatments there is no new treatment. Where is innovation going to come from in the world of evidence based medicine. I am asking you a question.

SS: I’ll answer it. In controlled clinical trials.

TG: That’s exactly what we are doing
.
SS: No you’re not.

TG: No. We are. Listen, You..we are involved..
SS: Have no control group.

TG: in a randomised. In the development of a randomised controlled trial with America and with Bulgaria.

SS: But you haven’t done it.

TG: Because you don’t do it overnight. This takes a long time and it requires funding. We probably need a lot of funding.

SS: Then why are you already charging people when you don’t know that it works?

TG: Because..Because we are finding out about the prospective trials. Fair enough, you know make your cheap programme. Make your cheap point. You’re not gonna change the way we gonna do. You’e not gonna change the determination we have got to make patients better. I see these patients. I know these patients. I value these patients. I have looked after them for years. I have seen them after the procedure. The vast majority are improved. We have something fantastic here and you will not deflect it. Not one bit and your behaviour and the BBC’s behaviour is despicable.

SS: But critics of Doctor Gilhooly’s behaviour believe the doctor’s watchdog: the General Medical Council should now intervene.

Prof Zajicek: Well I think there is a case for reporting this to the GMC. I think I would strongly advocate people with MS or any other condition not to have any such procedures until there is at least some evidence that there’s, that there’s a benefit to it. Erm and at this stage I think we need to publicise as widely as possible that this sort of thing is going on. And erm we’ve got to try and stop it.

SS: It’s two months since Karen’s liberation. She is walking without a stick and says her hand still feels more sensitive. She has chosen not to have her improvements objectively assessed by a neurologist.

Karen: If I never see the neurologist again then that’s really what I intend. I don’t. I don’t intend to go back. It’s like a whole weight has been lifted erm and then and whereas I p’raps used to shed a tear every day. I haven’t cried since I had the procedure. Placebo? Bring it on! Love it! If it’s placebo I’ll take it every day. Every day.

SS: We understand a complaint has now been made about Dr Gilhooly to the GMC although not by any contributor to this film. Like Dr Tariq he is still offering treatment. Both of them apparently convinced they can justify the faith and the money the patients are investing in them
.
SS: Well if you have been affected by any of the issues in that report you can call the BBC Action Line. The number is 0800 566 065. The lines are open twenty-four hours a day and all calls are confidential.

AMcG wrote:What I think we should do is send her very thorough and detailed crits of her show in as gentle and considerate a tone as possible but dealing with all her misconceptions.

She offers to respond to further correspondence so let's give her it. Lots of it.

fantastic work, AMcG, thank you for transcribing the article

There does seem to be a definite negative slant to it but I wouldn't say they did anything wrong. It is concerning that the reporter was so easily diagnosed as having CCSVI. It makes you wonder how many healthy people have it. It would be nice to get a blinded trial done by someone who knows what they're doing to prove this one way or another.

I can't believe a study that says they found 0 cases of CCSVI in patients with MS as anything but poorly done ultrasound but I would have a harder time not listening to a study that finds similar instances of CCSVI in MS patients as in normals.

This programme was in the south west, a beautiful area of England but with a low population. In contrast my Telegraph article was seen by a larger and more influential audience.

MarkW