Prof G,It's not a way to proritise research, but after 50+ years of research we are no nearer to giving people back mobility if they are in wheelchairs or providing any treatment to stop progression in SP and PPMS. Unfortunately, if a PPMS patient comes to you tomorrow there is nothing you can give them apart from symptomatic treatments. CCSVI will be proved to be a false dawn, but the best way to consign it to the dustbin if for the research neuros to come up with treatments which stop progression and promote repair. These treatments are always 5-10 years away. When they do eventually arrive, scams like CCSVI, LDN etc will disappear. The desperation of MS patients can never be under-estimated hence desperate attempts to get stem cell treatments in the Ukraine and China.
What worries me most about the CCSVI saga are the ethical issues that have arisen:(1) charging, desperate and vulnerable people, for an unproven procedure and (2) the risks associated with the procedures (stenting is not a benign procedure, there have been deaths as a direct complication of the procedure). The first lesson I was given as a medical student on the wards was "Primum non nocere" or "first, do no harm"! How can I betray my teachers?
The do no harm position is more difficult with MS. This is a disease where overtime the patient gets progressively worse. There must be scope for patients of sound mind to instruct their doctors / neuros to take some risks. Patients with high EDSS should be given the chance of high risk treatments ie not yet licensed. Neuros should ask themselves what they would do at EDSS 8 and allow their patients the same choice. There's plenty of patients who can't wait another 10 years (they won't be around). They would happily offer themselves as guinea pigs for bone marrow stem cells trials etc. I'd replace 'do no harm' with 'do not let sufferer'. Preventing suffering, even if there is a risk of harm / death is what patients might wish of their doctor.
I would say it’s not good science to rule out a potentially significant treatment before the results of the trials are in. Just because the mechanisms of CCSVI are not yet fully understood, it does not mean that it has no benefit on MS symptoms. Or another way of putting it, some of the symptoms previously labelled as ‘MS symptoms’ may indeed be symptoms with a vascular cause. I refer for example to issues with fatigue, stamina and ‘brain fog’. I have had the treatment and have had great relief in these areas which has significantly improved the quality of my life. Additionally, and to me, unexpectedly, my leg strength has also improved. After having a serious limp for 18 months, my walking is now far more fluid, and my gait is very nearly normal. It had also helped me by eliminating the muscle pain I had at night. It is also bliss to wake up every morning without my head throbbing with pressure as it did before. I have seen my venogram images and I did have the venous problems Zamboni has described in both my jugular veins and also my azygos vein. When contrast medium was added, the blockage of downward flow in my jugular vein was obvious, as was the reflux of blood back up the vein.I do not understand your ‘first, do no harm’ comment, in light of the fact that you are happy to prescribe and help develop MS drugs that have caused death in MS patients. It is all about the benefit outweighing the risk surely? You are also still bringing up the dangers of stenting when Zamboni only uses, and advocates, ballooning. This, as you know, is a vastly less risky procedure. Also, just to stop you worrying further, neither I, nor the other patients I met getting venoplasty were either desperate or vulnerable.I think maybe that you should either engage with the work that is being done in this area or wait until we know more before reaching conclusions. Just taking pot shots from the side-lines doesn’t strike me as being very productive for anyone.
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