“I believe that studying or being aware of the history of MS is important; it may provide important insights into the origins of the disease and important clues to its cause.”
Possibly the earliest known description of a case of MS referred to the woman depicted in this woodcut, St. Lidwina of Schiedam. Lidwina lived in Holland in the 14th century and historical texts reveal that she was afflicted with a debilitating disease, sharing many characteristics that we now associate with MS.
St Lidwina’s disease began at the age of 16 after a fall while ice-skating. From that time onwards, she developed walking difficulties, headaches and violent pains in her teeth. By the age of 19, both her legs were paralysed and her vision was disturbed. Over the next 34 years, Lidwina’s condition slowly deteriorated. There is no indication that there were periods of remission. Lidwina eventually died at the age of 53. Lidwina’s historical symptoms are consistent with those of MS, as is her age of onset, duration and course of disease. If this is correct then MS may date back to the 14th century.
“Why is this important? It is clear that MS was not common in until quite recently (middle to late 19th century), therefore there must be some message hidden in studying historical cases that can point to the environmental causes or triggers of this disease. Something must have emerged in the environment. If only we knew!”
“Interesting or not?”
CoI: Nil
The lady in question survived 34 years after first symptoms – not far off the figure for today. Now we have neuros and DMTS!Main reason not so many MS cases in the past – no / few neuros. Best way of reducing incidence of MS – don't have any neuros.Some observations from this historical case (if it was MS): – smoking not a factor (and wasn't in my case). I'm still not convinced that smoking is a major risk factor. – the lady's MS can't be atributed to diet coke, power lines or car pollution.- Vit D may be a factor (look at the heavy clothing and head scarf).- urbanisation likely to be a factor (14th C Europe saw huge increase in move to the towns – even more so in 19th and 20th C).- viruses more easily spread in an urban set up. – hygien hypothesis (less exposure to bugs etc at early age when based in a town).But I'd stick to the present (MRIs, Brain Banks, biomarkers etc) – you'll end up like the 'experts' on Time Team trying to tell a story on the basis of some broken pottery and a few bones.Making MS history should be the goal.
Re “Making MS history should be the goal.”Hear hear!Regarding St. Lidwina of Schiedam: when I was diagnosed in 2008 and given MS paraphernalia to read, I was informed that St. Lidwina did have a period of relapse and remission. The poor lass would suffer relapses and her nunnery sisters would pray until she got better. Her remission was thought to be by the grace of God. Over time her condition is thought to have become progressive.So, more than 600 years later were pretty much in the same boat. Within 10 years 80% of RRMS sufferers still become progressive. PPMS sufferers are still sent up the creek without a paddle. Medical advances and understandings have been painfully and embarrassingly slow.Like my friend, the highly esteemed Prof Charles constant-French, said: “I still find it really quite amazing that we simply don’t understand what triggers [MS], why does it start in people when it does.”This totally undermines the statement made by my good pal John Richert – executive vice president of the National MS Society’s Research and Clinical Programs Department – who in 2009 said: “We’re more than halfway there… to protect[ing] people with MS from nervous system damage and even to reverse damage.”The world of MS research is not being honest with MS sufferers. They are giving conflicting messages. Scientists are not pulling together and sharing knowledge. The truth of the matter is that we are either nearing the end of MS as we know it, or we’re only just starting to understand things about the disease. If it’s a case of the latter then pretty much all of us with the MS disease will never recover from the condition as the advancements in treatments cannot possibly reach us within time. That’s a real shame people.
I share your view about where we are with MS research. Prof G fed back the following from the MS Frontiers conference:"3. Dr Stephen Sawcer, Professor George Ebers and Prof. Gavin Giovannoni; all spoke on gene-environment interactions. We all agreed that MS is complex disease and we are getting closer to defining the causal pathway. This is important to target therapies and more importantly to prevent MS." I've got no idea what closer means – 5 years away, 10 years away. When I was diagnosed some 8 years ago the disease was an inflammatory disease of the nervous system. The more they find out the more complex / worse it gets. At the time of diagnosis my neuro told me that MS doesn't involve pain and doesn't affect thinking! It's an onion of a disease – everytime they take a layer off, there are more questions than answers. I've told my kids that after Uni they should work in the field of MS research – not for me, but for having a job for the next 30 years!We really need a big breakthrough in terms of causes and mechanisms.What do immunologists do? If this is an immune mediated disease, why aren't they doing the research?
Re. "I've got no idea what closer means – 5 years away, 10 years away." In relation to vitamin D and EBV, we have the means to test treatments targeting these two environmental factors today. In fact some vD trials are currently running in established MS (see earlier posts). Our group will be submitting two grants in the Autumn to test a drug that targets EBV; if EBV is involved in driving disease progression, which I suspect is the case, it may help MS'ers with progressive disease. I try not to raise false hopes and prefer to manage expectations; I have pointed out before that drug development takes years, even decades. Ideas and experiments today typically lead to licensed treatments in ~15 years time. The delay is due to regulatory hurdles.
Prof G,Thanks for your honest response. The frustration for the patient is that we only get this one life – so from diagnosis the clock starts ticking and we make our way slowly or quickly up the EDSS scale. I would hope that Dr Chattaway's trial doesn't involve a Phase I (testing safety) on healthy patients. If the Phase II shows positive results (and is a drug licensed for other diseases), I would hope that there might be some consideration to prescribing on the basis of compassionate use.We've set up a regulatory system that is not fit for purpose in terms of diseases such as MND and progressive MS. Many patients with these diseases would happily sign the appropriate consent forms to be given a chance to try an early stage experimental drug. In 15 years time, the safety of a drug will not be my concern (I'll be in an urn at the bottom of lake Geneva).
Maybe one solution is to rethink the other research that is being undertaken. In your team there are researchers looking at the impact of neutralising anti-bodies) and others (Prof Baker – who referred to himself as the mouse doctor at the research day)looking at EAE (which you have noted in your blog is not MS). If EBV and Vit D looking so promising then it might be a case of ditching some of the research that is unlikely to significantly impact beneficially on the lives of people with MS and focussing on the more promising stuff. My neuro (US) thinks that Alemtuzumab may be available here early next year. If so, I'm not sure why any research is being fudned which is focused on the injectibles. Your Mr Blair when he came into office used the phrase 'education, education, education'. For MS researchers it should be 'progression, progression, progression'. I'd argue that if a piece of research does not address the issue of stopping progression, then why is it going ahead.
I was looking up St Lidwina.I read the article and comments. I am 59 years old.Diagnosed over 30 years ago. So some symptoms 11 years before. Went to Cancun walked up outside pyramid. Heat and altitude do me in. That's when symptoms increased with mononucleosis too.I've had Lymes disease twice.Diagnosed with drop feet associated with MS in May 6, 2016 and where leg braces.I am the first person with Penn Med Chester County, PA to have the FDA approved OCREVUS INFUSION on May 2017.I truly believe that it helps. I have the infusion twice a year. ALSO PRAYER HAS PREVENTED MY DISEASES PROGRESS ON.Stress is never good. God Bless anyone diagnosed and family members.
In contrast to the effect of Prayer, there has been a phase III trial for ocrelizumab. We need evidence not simple faith.