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You can find the current article at its original source at http://www.theguardian.com/science/brain-flapping/2014/apr/17/multiple-sclerosis-miracle-cures-ms
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| Multiple sclerosis and 'miracle cures': sometimes it's the hope that'll kill you | |
| (about 1 hour later) | |
| I have progressive | I have progressive |
| multiple sclerosis. I’m quite disabled, and I have no idea how disabled I’ll | multiple sclerosis. I’m quite disabled, and I have no idea how disabled I’ll |
| end up. That’s what MS is like. It’s unpredictable, and it’s different for | end up. That’s what MS is like. It’s unpredictable, and it’s different for |
| everyone. Ask 100 people with MS, and you’ll get 100 different sets of | everyone. Ask 100 people with MS, and you’ll get 100 different sets of |
| symptoms. | symptoms. |
| There are | There are |
| treatments: things that slow down progression, or even halt it in some cases. | treatments: things that slow down progression, or even halt it in some cases. |
| But the Holy Grail is something that will cure multiple sclerosis, repair the | But the Holy Grail is something that will cure multiple sclerosis, repair the |
| damage our incorrectly primed immune systems are causing to the myelin that | damage our incorrectly primed immune systems are causing to the myelin that |
| coats our nerves, and restore us to full functioning. | coats our nerves, and restore us to full functioning. |
| Faced with | Faced with |
| the uncertainty of a condition that can manifest itself in many different ways, | the uncertainty of a condition that can manifest itself in many different ways, |
| progress at variable speeds, and have multiple unpredictable endpoints, it’s | progress at variable speeds, and have multiple unpredictable endpoints, it’s |
| not surprising that we are so prone to grasp at any suggestion of a cure, | not surprising that we are so prone to grasp at any suggestion of a cure, |
| however improbable it may sound, and however scant the evidence. | however improbable it may sound, and however scant the evidence. |
| We still | We still |
| don’t know for sure what causes MS, though many things have been suggested, | don’t know for sure what causes MS, though many things have been suggested, |
| some less likely than others. For instance aspartame, heavy | some less likely than others. For instance aspartame, heavy |
| metals (including dental fillings), and allergies | metals (including dental fillings), and allergies |
| have all been debunked as causative agents. Going by current research, multiple | have all been debunked as causative agents. Going by current research, multiple |
| factors are actually involved, including genetics, | factors are actually involved, including genetics, |
| viruses, environmental factors, and vitamin | viruses, environmental factors, and vitamin |
| D deficiency. | D deficiency. |
| And what of | And what of |
| cures? Individual stories, such as that of Dermot | cures? Individual stories, such as that of Dermot |
| O’Connor who claims to have cured his MS through diet, exercise, and | O’Connor who claims to have cured his MS through diet, exercise, and |
| acupuncture, sadly prove nothing. Multiple sclerosis has relapses and | acupuncture, sadly prove nothing. Multiple sclerosis has relapses and |
| remissions. You get worse then better. So it’s always hard to tell whether | remissions. You get worse then better. So it’s always hard to tell whether |
| you’re feeling better by chance or because of something you’ve done, unless | you’re feeling better by chance or because of something you’ve done, unless |
| it’s part of a properly conducted clinical trial. | it’s part of a properly conducted clinical trial. |
| One theory | One theory |
| that’s gained a lot of publicity over the last few years is CCSVI – chronic | that’s gained a lot of publicity over the last few years is CCSVI – chronic |
| cerebrospinal venous insufficiency. It’s unusual in that it’s received attention | cerebrospinal venous insufficiency. It’s unusual in that it’s received attention |
| both from the media and the medical and scientific establishment. The idea runs | both from the media and the medical and scientific establishment. The idea runs |
| that compromised flow of blood in the veins draining the central nervous system | that compromised flow of blood in the veins draining the central nervous system |
| leads to iron deposits | leads to iron deposits |
| around the pulmonary veins, which triggers autoimmunity and degeneration of | around the pulmonary veins, which triggers autoimmunity and degeneration of |
| myelin. | myelin. |
| The study | The study |
| that first proposed the theory of CCSVI, carried out in 2008 by | that first proposed the theory of CCSVI, carried out in 2008 by |
| Paolo Zamboni, was interesting but had a number of methodological issues. | Paolo Zamboni, was interesting but had a number of methodological issues. |
| It was inevitably small, it was non-randomised and non-blinded, participants | It was inevitably small, it was non-randomised and non-blinded, participants |
| remained on their usual treatments during the trial so it was impossible to | remained on their usual treatments during the trial so it was impossible to |
| identify the cause of any effect, and all participants were in relapse, so were | identify the cause of any effect, and all participants were in relapse, so were |
| likely to improve anyway. | likely to improve anyway. |
| The study | The study |
| found venous abnormalities in every one of the participants, a result that | found venous abnormalities in every one of the participants, a result that |
| automatically sets suspicious Spidey senses tingling in researchers. And when | automatically sets suspicious Spidey senses tingling in researchers. And when |
| Dr Zamboni had the blockages cleared using angioplasty, his paper quoted | Dr Zamboni had the blockages cleared using angioplasty, his paper quoted |
| outcome results at six months post-procedure, with most showing an improvement. At | outcome results at six months post-procedure, with most showing an improvement. At |
| 18 months, on the other hand, his participants were doing the same or even | 18 months, on the other hand, his participants were doing the same or even |
| worse than they had before the intervention. Moreover, there is a potential conflict | worse than they had before the intervention. Moreover, there is a potential conflict |
| of interest in Zamboni owning the patent relating to the diagnostic | of interest in Zamboni owning the patent relating to the diagnostic |
| equipment used for diagnosing CCSVI, or the support his research centre has | equipment used for diagnosing CCSVI, or the support his research centre has |
| received from its manufacturer in the form of equipment and technical | received from its manufacturer in the form of equipment and technical |
| assistance. | assistance. |
| But the work | But the work |
| certainly merited further research, to see if CCSVI did indeed exist, if there | certainly merited further research, to see if CCSVI did indeed exist, if there |
| was a link between it and MS, and if so, whether angioplasty to clear the | was a link between it and MS, and if so, whether angioplasty to clear the |
| blockage could help MS. | blockage could help MS. |
| News of the study | News of the study |
| soon reached the MS community, and many individuals with MS, impressed by the | soon reached the MS community, and many individuals with MS, impressed by the |
| reported results, wanted angioplasty straight away. As there was insufficient | reported results, wanted angioplasty straight away. As there was insufficient |
| evidence for health authorities to fund the treatment, people have been travelling | evidence for health authorities to fund the treatment, people have been travelling |
| to private clinics in Poland, Puerto Rico, or Thailand, often remortgaging | to private clinics in Poland, Puerto Rico, or Thailand, often remortgaging |
| their houses or undertaking months of fundraising to raise the thousands of | their houses or undertaking months of fundraising to raise the thousands of |
| pounds necessary. | pounds necessary. |
| Results were | Results were |
| reported back on social media, often on YouTube. But, of course, individual | reported back on social media, often on YouTube. But, of course, individual |
| uncontrolled anecdotes do not equate to evidence. And even Zamboni himself was | uncontrolled anecdotes do not equate to evidence. And even Zamboni himself was |
| urging a go-slow approach, telling people with MS to enrol | urging a go-slow approach, telling people with MS to enrol |
| on clinical trials rather than have the treatment done privately. | on clinical trials rather than have the treatment done privately. |
| And was the | And was the |
| treatment safe? In most cases, it seems to be. But there have been incidents of | treatment safe? In most cases, it seems to be. But there have been incidents of |
| possible side effects, including intercranial | possible side effects, including intercranial |
| haemorrhage, thrombosis, | haemorrhage, thrombosis, |
| compression | compression |
| of cranial nerves, heart | of cranial nerves, heart |
| arrhythmias, and deaths, for instance of Canadian Mahir | arrhythmias, and deaths, for instance of Canadian Mahir |
| Mostic. Trials | Mostic. Trials |
| at Stanford University were halted after one participant died and another | at Stanford University were halted after one participant died and another |
| needed emergency surgery to remove a stent that had migrated into their heart. | needed emergency surgery to remove a stent that had migrated into their heart. |
| Meanwhile, | Meanwhile, |
| research was being done. And it wasn’t good news for the CCSVI advocates. So | research was being done. And it wasn’t good news for the CCSVI advocates. So |
| far, no | far, no |
| significant difference has been found in the presence of CCSVI in people with | significant difference has been found in the presence of CCSVI in people with |
| and without MS. A controlled and blinded sham | and without MS. A controlled and blinded sham |
| surgery trial of the angioplasty procedure found no benefit from the | surgery trial of the angioplasty procedure found no benefit from the |
| intervention. Research continues, as indeed it should. But I’m not hopeful. | intervention. Research continues, as indeed it should. But I’m not hopeful. |
| Will there | Will there |
| be a cure for multiple sclerosis? Eventually, yes I think there will. But I | be a cure for multiple sclerosis? Eventually, yes I think there will. But I |
| think it will come via stem | think it will come via stem |
| cell research. Prevention of MS, and many other diseases, will be achieved | cell research. Prevention of MS, and many other diseases, will be achieved |
| through vitamin | through vitamin |
| D supplementation in pregnancy. | D supplementation in pregnancy. |
| And only | And only |
| after detailed clinical trials to show efficacy and safety. Naturally. | after detailed clinical trials to show efficacy and safety. Naturally. |
| Margo Milne is on Twitter, @margojmilne | Margo Milne is on Twitter, @margojmilne |