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