As MS is highly likely to be a preventable disease we should be doing everything we can to reduce our exposure to modifiable risk factors. Smoking, passive smoking, solvent exposure and air pollution have all been linked to an increased incidence of MS. It has always been argued that air pollution may work by acting as a filter for ultraviolet light and hence increases one’s risk of getting MS by reducing UVB exposure, which is important for vitamin D synthesis in the skin. However, I am not sure this is the case as common to all these exposures, including air pollution, is inflammation in the lungs.
The current hypothesis is that inflammation in the lungs changes or alters proteins via a process called post-translational modification, which converts normal proteins in highly immunogenic autoantigens that trigger autoimmune disease. There is good support for the latter hypothesis in rheumatoid arthritis, but to the best of my knowledge outside of animal models, the evidence in MS remains speculative. Saying this who wouldn’t want to breathe clean air if one of the benefits is a lower risk of MS?
The study below from Padua Province in Italy shows quite a strong correlation (r-0.89) between exposure to particulate matter in the air greater than 2.5 micrometres (PM2.5) and the prevalence of MS. Some epidemiologists say that when you start seeing R-values close to 0.9 it is hard to ignore them and suggest the relationship could be causal. I am not sure about this, but it is clear that we need to more interventional studies, to reduce air pollution, and track what happens to MS incidence.
Air pollution over London.
In relation to the issue of air quality, there was a landmark ruling from an inquest yesterday that linked the tragic death of a nine-year-old girl, Ella Adoo-Kissi-Debrah, who died following an asthma attack 9 years ago to air pollution. Legal pundits have stressed the importance of this case, which will now create the legal precedent for the UK to modify its clean air act. The importance of the latter cannot be ignored as it may lead to a drop in the incidence of many diseases linked to air pollution including MS.
The question we also need to ask ourselves is there anything we can do to address the problem of air pollution in low- and middle-income countries that are all seeing a rise in MS incidence? Let’s hope as we transition from a carbon-energy economy to other cleaner forms of energy we will see this problem improve across the world.
Background: Fifty years of epidemiological survey and intra-regional differences in prevalence suggest that environmental factors may be associated with increased multiple sclerosis (MS) risk in Northern Italy. Based on the findings of a previous study carried out in the highly polluted Padan Plain, we further explored the relationship between PM2.5 levels and MS prevalence by comparing bordering areas characterized by quite different environmental conditions, namely the Municipality of Padua and the special protected zone (SPZ) of the Euganean Hills Regional Park, located 15 km from the City.
Methods: Three territories were identified; 1) the SPZ, extending over an area of 15.096 hectares and having a total population of 23,980 inhabitants, 2) the urban area of Padua, with a total population of 210,440 inhabitants and repeatedly recognized by the European Environmental Agency as one of the most polluted cities of Europe, 3) the Intermediate Zone (IZ), i.e., the area in between the previous two, including part of the urban territories of eight villages adjacent to the SPZ. Demographic and socio-economical data were obtained from official government sources (www.istat.it and http://www.regione.veneto.it). All Italian MS patients residing in these three areas on December 31, 2018, were registered. PM2.5 concentrations (annual average 1998-2018, μg/m3) were measured by satellite. The correlation between PM2.5 concentrations and MS prevalence was analysed.
Results: MS prevalence was significantly higher in Padua City (265/100.000) compared to both the SPZ of the Euganean Hills Park (160/100,000; p < 0.0001) and the IZ (194.4/100,000). Prevalence strongly associated with the annual average concentration of PM2.5 (r = 0.89 p < 0.00001).
Conclusion: In the Province of Padua, one of the most polluted areas of Europe, MS prevalence is strongly associated with PM2.5 exposure. Our findings suggest that air pollutants may be one of the possible environmental risk factors for MS in the Veneto Region of Italy.
Crowdfunding: Have you supported Prof G’s ‘Bed-to-5km Challenge’ yet? Please do, all the money collected is going towards supporting MS research.
As I gradually drift into health-related politics I realise that it is not enough just to measure something to trigger a change in behaviour. Information and data don’t change behaviour; carrots and sticks or incentives do. The US study below shows that women in academic medicine are no better off than they were 35 years ago. Women physicians are less likely than men to be promoted to the rank of associate or full professor or to be appointed to the department chair. I wouldn’t be surprised if the same situation exists in the UK and other high-income countries and it no doubt applies to academic neurology and the field of MS.
The discrimination against women and other segments of our population has a pernicious effect on outcomes. If there is no level playing field it affects motivation and performance in the workplace and ultimately the kind of research that gets done, MS services we provide and clinical outcomes of our patients with MS.
We have highlighted gender bias in relation to MS research activities many times before on this blog. In relation to the make-up of MS trial steering committees, speakers at conferences, authors on publications and the faculty of important MS conferences, etc. Unconscious bias is all around us and unless you have an active process in place to address gender imbalances they don’t go away.
My wife who is a feminist is adamant that nothing is going to change regarding gender inequality unless men start to engage and actively promote women in their spheres of influence. I agree with her and more importantly as a father-of-daughters, I have a vested interest in making this happen. In the UK we have the so-called Athen Swan initiative, by which academic institutions have to show that they are addressing the gender gap and depending on how well they are doing they get a rating. This rating was used by the funding agencies to effect change; to apply for research funding from the MRC and NHIR you had to have a gold or silver Athena Swan award, which meant that women were getting a better deal from these Institutions.
This Athena Swan policy was the stick and carrot to make change happen. However, the Athena Swan requirement for funding applications has now been dropped in the UK. As a result, I predict there will be a gradual slide back down the hill and the next generation of women in academic medicine will be let down. I hope I am wrong.
The cynics reading this blog post will ask what thas this got to do with MS? I would suggest you think about the answer to this question and make a comment. Discussing how broader societal issues impact on MS research, MS management and the MS workforce underpins what happens in the field.
Background: In 2000, a landmark study showed that women who graduated from U.S. medical schools from 1979 through 1997 were less likely than their male counterparts to be promoted to upper faculty ranks in academic medical centers. It is unclear whether these differences persist.
Methods: We merged data from the Association of American Medical Colleges on all medical school graduates from 1979 through 2013 with faculty data through 2018, and we compared the percentages of women who would be expected to be promoted on the basis of the proportion of women in the graduating class with the actual percentages of women who were promoted. We calculated Kaplan-Meier curves and used adjusted Cox proportional-hazards models to examine the differences between the early cohorts (1979-1997) and the late cohorts (1998-2013).
Results: The sample included 559,098 graduates from 134 U.S. medical schools. In most of the cohorts, fewer women than expected were promoted to the rank of associate or full professor or appointed to the post of department chair. Findings were similar across basic science and clinical departments. In analyses that included all the cohorts, after adjustment for graduation year, race or ethnic group, and department type, women assistant professors were less likely than their male counterparts to be promoted to associate professor (hazard ratio, 0.76; 95% confidence interval [CI], 0.74 to 0.78). Similar sex disparities existed in promotions to full professor (hazard ratio, 0.77; 95% CI, 0.74 to 0.81) and appointments to department chair (hazard ratio, 0.46; 95% CI, 0.39 to 0.54). These sex differences in promotions and appointments did not diminish over time and were not smaller in the later cohorts than in the earlier cohorts. The sex differences were even larger in the later cohorts with respect to promotion to full professor.
Conclusions: Over a 35-year period, women physicians in academic medical centers were less likely than men to be promoted to the rank of associate or full professor or to be appointed to department chair, and there was no apparent narrowing in the gap over time. (Funded by the University of Kansas Medical Center Joy McCann Professorship for Women in Medicine and the American Association of University Women.).
Crowdfunding: Are you a supporter of Prof G’s ‘Bed-to-5km Challenge’ in support of MS research? The project being funded is being led by Dr Ruth Dobson; yes, a woman researching MS. So every pound raised will be addressing the gender issue indirectly.
Some commentators’ predictions were correct; when you are not well and are on the receiving end of the NHS as a patient you see things that you don’t necessarily see as an HCP and NHS employee. As a result of being ill with polytrauma and spending 14 days in the hospital, I have acquired some insights that I would like to share with you. It will be an interesting exercise to see if any of these insights can be adopted from the acute setting and applied to chronic conditions such as the management of MS.
Protocols and Checklists
Despite just coming around from being knocked unconscious for 5-10 minutes and lying in the middle of the road with excruciating pain in my hips, legs and upper spine I recall the paramedics running through their checklist to make sure the scene was safe before they assessed me. They then went through a comprehensive assessment driven by a well-rehearsed protocol.
I was then blue-lighted to the acute trauma unit at King’s College Hospital and went through their resuscitation protocol and investigations to document my injuries, resuscitation requirements and treatment. It is interesting that many of the checklists that the different teams who saw me used had overlapping items, which although slightly irritating from my perspective, were deliberate to make sure nothing was missed. It was interesting that during my resuscitation there was one person, an anaesthetist, who was in charge. He was hands off standing in the background and directing the swarm of people working on me. He actually held a tablet computer and was entering data in realtime.
Insights: In MS clinical practice we should make more use of standardised checklists and protocols so as not to miss out on anything when managing pwMS. It is easy to take short-cuts when not using a protocol, which is why almost all medical research shows better patient outcomes when practices are modelled around standardised checklists. The use of checklists in MS clinical practice is something we have discussed as part of our MS Raising the Bar initiative (RtB). I think implementing these in the UK will have a dramatic impact on MS care. What do you think?
Before personalised, precision or customised medicine we need standardised medicine, i.e. delivering the basics to everyone with MS in a timely manner.
Another insight is to have a named care coordinator, i.e. an HCP who has an overview of someone’s care. In MS this has traditionally been the clinical nurse specialist (CNS), but as CNS MS caseloads have increased and with the push towards self-monitoring and self-management who coordinates MS care and management needs to be reassessed. I would suggest we think about delegating this to a well-designed technology platform. This was made clear to me in the trauma unit; the only person who knew everything about me at any point in time was my electronic patient record.
Once I had been resuscitated, stabilised and my pain brought under control with a morphine injection and an on-demand subcutaneous morphine infusion different teams went to work on me. Once my vital signs and pain were stable, I was sent for a whole-body CT scan including head, neck, chest and abdomen. I also had an x-ray of my left leg. At some stage I was sent back for further contrast-enhanced imaging of my urinary tract to make sure my bladder was intact; it is quite common when you fracture your pelvis that you damage your bladder.
Once the trauma team was happy that I did not need a chest drain and abdominal surgery they brought in teams of other experts to patch me up.
First, the maxillofacial surgeons to suture my lacerated right ear.
The next team to see me were the orthopaedic surgeons to address the deep laceration over my right knee and my fractured pelvis. After a negative saline load test on my left knee, the laceration was sutured. For the saline load test, the orthopaedic surgeon injected about 75ml of saline into my knee under high pressure to see if there was any leakage of saline via the laceration; if there had been saline leakage it would have indicated that the injury had penetrated the synovium (sack around the knee joint) and would have required the laceration to be explored surgically so as to close the defect in synovium under aseptic conditions. Having your knee blown up like a balloon with saline under pressure was quite uncomfortable.
Prof G’s fractured pelvis
Within 10 minutes I had had an opinion from the orthopaedic surgeon on-call about my fractured pelvis; he provided me with three treatment options. One option was to treat my pelvis conservatively and wait for the fractures to heal spontaneously; this really was not an option as I would not have been able to weight bear for at least 6-12 weeks and this would have resulted in a prolonged inpatient stay. The other options were acute pelvic fixation using a 2D x-ray guidance to place the pins; this procedure could be done as an emergency. The third option was to wait for for a weekday to have the pelvis fixated electively using a new 3D intraoperative x-ray guidance system. The advantages of the latter were much lower risk of nerve damage from placing the fixation pins or screws, a quicker procedure and interestingly lower overall radiation exposure. I chose the latter safer option despite being in severe pain for the next 48 hours from an unstable pelvis.
Prof G’s fixated pelvis
I went to surgery 48 hours later and had a successful pelvic fixation with no collateral damage to the structure passing through the pelvic bones. I subsequently found out that I was very fortunate in that Kings College Hospital is the only orthopaedic unit in the UK that offers this intraoperative 3D guidance technique for pelvic fixation. My orthopaedic surgeon had been trained to use the technology on a fellowship in Paris and was the only one in the UK using this technology at present. This is important as it reduces collateral damage to nerves, blood vessels and other structures in the pelvis from about 5% with the 2D system to less than 1%. How lucky was I?
Insight: If available why would one not choose the most effective and safest therapeutic option? This insight is very pertinent to the management of MS and how we use licensed DMTs; i.e. watchful waiting vs. slow escalation vs. rapid escalation vs flipping the pyramid.
Next up was the neurosurgery team to assess my cervical spine fracture (burst fracture of the body of C7 and fractured left C7 pedicle). The neurosurgeon was not happy with just a CT scan so I had to have an MRI of the cervical spine, which showed that I had a prolapse of a large bony fragment into the spinal canal that was pressing on the C7 nerve roots leaving the spine and possibly the C8 roots as well. Fortunately, there was no compression of my spinal cord.
As I only had an incomplete sensory loss in my hand and forearm, in the distribution of the C7 and C8 nerve roots or fibres, and no weakness in the arm the neurosurgeon recommended conservative management with the option of surgery if things got worse. Over the next 3-4 days, things got worse; my pain became unbearable, my sensory symptoms were clearly fluctuating, i.e., whenever I sat up and gravity began pulling down the bony fragments from my crushed vertebrae that were irritating and damaging the nerve fibres leaving my spinal cord. In addition, the pain was getting worse. When it was noticed that I had become weak in the muscles supplied by these nerves the decision was made to abandon the conservative approach to take me to theatre and to decompress the fracture, i.e. to remove the bony fragments so as to free up the nerve fibres, and to stabilise the spine with screws.
Prof G’s fractured C-spine
The neurosurgeon then discussed with me the pros and cons of an anterior or posterior approach to decompress the fracture. The anterior approach is through the front of the neck and is associated with less postoperative pain, but is riskier in terms of the potential damage to structures in the neck, which could, for example, have left me with a hoarse voice and poor speech. In addition, the surgical field of view when it comes to looking at the nerve roots or nerve fibres leaving the spinal cord is poor with the anterior approach. In comparison, the posterior approach is associated with much more postoperative pain as the neck muscles have to be stripped from the vertebrae. However, the posterior approach gives a much better field of view in terms of seeing the nerve roots clearly and it has fewer complications from collateral damage to other structures.
I asked him given my CT and MRI findings which approach will give him the best chance of achieving an optimal outcome. He said a posterior approach, i.e. from the back of the neck, which is why he had decided on the posterior approach. It takes approximately 18 years, and sometimes longer, to train a spinal neurosurgeon, which is why they need to make these types of decisions with all the facts and caveats mentioned above. It was very kind of him to take me through his thinking and why he had settled on the posterior approach. I suspect by involving me and exposing me to his decision-making process was his way of getting me to understand and buy into any potential complications of the surgery.
After the procedure, the neurosurgeon told me that he had discussed my case with three colleagues at their MDT (multidisciplinary team) meeting and the consensus was to approach my fracture from the back, i.e. a posterior approach. It is reassuring to have the collective wisdom of four spinal neurosurgeons backing-up the decision-making process.
The way the orthopaedic neurosurgery teams involved me in their decision-making processes and kept me informed is exemplary and is something we could adopt to improve our decision-making process in MSology. For example, instead of giving a patient with MS two or three DMTs to choose from, we should say although you are eligible to be treated with DMT A, B and C we recommend DMT B for theses reasons; i.e. guided-decision making.
Prof G’s fixated spine
Insights: Informed and shared decision making in clinical practice is not what it says on the tin. To become informed takes more time than you realise and I propose we replace the term shared-decision making with the term guided-decision making. This term clarifies for me many ambiguous feelings I have had about shared-decision making around DMTs in MS. At the end of the day, the HCP is in a much better position to make a decision around DMTs for pwMS and to guide the patient in the right direction.
I was very fortunate to have access to state-of-the-art technology to fix my pelvis. Are there ways to drive the rapid adoption of innovations in the NHS? This is a longstanding problem in MS and is the primary motivation for our ‘Brain Health: Time Matters in MS’ policy initiative and why I spend so much of my time on MS educational activities.
A major part of my treatment was pain control and this was all over the place initially as I had three different teams making changes to my medications. The thing about pain management, like other symptomatic treatments, is that you need to make one change at a time and then give it time to work or not work before making subsequent changes. When you make two or three changes at once you don’t know what is working and what is not. However, this was sorted out once I saw the specialist pain team, who then took over my pain control. They first listened and documented my pain history before suggesting a change to my medications. They involved me in the decision-making process and created rules that I controlled, i.e. the frequency and dose of the top-up morphine was in my control. They initially cut back on and then gradually increased my gabapentin dose to allow me to get used to the medication. This strategy worked well and improved the side effects I was experiencing, particularly the excess sedation. Once there was one team in control of my pain things rapidly improved.
Insight: When managing symptomatic problems let one team take responsibility for the problem concerned and try not to make too many changes at once and when doing it make the changes slowly. This insight is very pertinent to the management of MS.
Insight: The dysphoric and sedative side effects of opioids in combination with other sedating drugs, such as the gabapentinoids, should not be underestimated. Clearly, this lesson extends beyond these classes and combinations of drugs and includes drugs like baclofen and amitriptyline. The torpor (a state of physical or mental inactivity or lethargy) associated with this side effect is very debilitating and explains why so many pwMS are unable to function mentally when their load of CNS sedating medications is often very high. HCPs should tread carefully when prescribing sedating drugs to pwMS; give them control to adapt and change the dose titration.
Post-fixation
Even though I have had all my fractures stabilised and ‘fixed’ it takes an enormous amount of effort to do anything physically and/or mentally; just getting up in the morning is exhausting. In addition, things that would take no time at all now take three or four times longer to do. For example, it typically took me about 15 minutes to shower and dress in the morning. It now takes me at least half an hour to shower and I then need to lie down and rest for 30 minutes to allow my neck and arm pain to settle and to recover from the physical exertion of completing the task.
Insight: The impact of diseases, such as polytrauma or MS, on mental and physical fatigue should not be underestimated. Relatively simple tasks including activities of daily living require enormous effort and it is virtually impossible to do two things at once. I now know why many of my patients with MS have trouble with simple physical and mental tasks and with multitasking; when you don’t have the bandwidth even simple tasks require everything you have both mentally and physically to complete.
Help
I am currently an invalid and hence I can’t live independently. In the hospital, I was dependent on the nursing staff for most things and now at home, my wife is my carer. She has to help me do the most basic things. This is very frustrating. In addition, I can’t contribute to household chores, such as shopping and cooking. I am very appreciative of her help and I am trying not to take her for granted in her new role as my carer.
Insight: At least most of my injuries are potentially reversible and things are and will continue to improve. For people with MS this is not always the case. I can only imagine the mental toll the latter has on my patients and their families, i.e. knowing that things will potentially get worse in the future. When I get back to work I am sure I will have more empathy around worsening disability in pwMS and how unappreciated carers are in the management of MS. I think we need to include carers in our sphere of influence as MS HCPs. What can we do to help carers adapt to their new roles and what can be done to make sure they have the right skills. For example, nobody discussed anything with my wife before my discharge; she has had to learn her new role very quickly. I am not aware of any MS Carer training programmes, but I suspect these already exist and are run by neurorehabilitation units. This is something that I will explore with our MS Academy Rtb initiative as part of our drive to share best practices.
This is just the beginning of my catharsis from the trauma of the last two weeks. As things come to mind I will write them down for discussion.
The fact that I have managed to write this piece, albeit lying on my back, with an uncomfortable neck brace on and using periscope glasses is a testament to my determination to get better and functional as soon as possible. Due to persistent arm pain, sedation and tiredness I have had to write this post in four sessions and it has taken me a lot longer to write than what it would have taken prior to my accident. It is clear that my life is currently being lived in slow-motion with a massive reduction in bandwidth. My attention span is maybe 20-30 minutes, which means I have to take frequent rests and I can’t multitask at all.
Thank you
Despite the inconvenience of this episode, I am determined to make it a positive experience. I am lucky to be alive, lucky not to have had a major head or spinal cord injury and lucky to be able to reflect on my experiences. In addition, this accident has shown me how important your social networks are in helping you cope with the consequences of being injured. I want to thank the NHS, my colleagues and friends, the wider MS community and my family for their help and support during this difficult time.
A big thank you to my colleagues in both the NHS and University for picking-up what they can in terms of my workload. I left behind a large NHS back-log that Dr Dobson, Dr Smets, Dr Turner, Freya one of our MS CNS, Patricia our MS pathway coordinator and my other colleagues have so kindly cleared. The Mouse Doctor (aka as Prof. Baker), Prof. K (Prof. Schmierer), Dr Marta, Dr Love (Prof. Amor), Dr Salek-Haddadi and others for taking on my teaching commitments. Then there are so many other colleagues who work with me on other initiatives who have taken up the baton; thank you. A special thanks to Stephanie, my assistant, and the other managers for being so helpful and supportive.
Prof. Andrew Less, who is one of my mentors, sent me a wonderful email full of sage advice about using my time off work to reassess my priorities. I can’t go back to the same-old when I return to work. So over the next 4-6 weeks, whilst I hopefully make a full recovery, I will be doing just that reassessing my priorities.
But before then I have already set myself a new challenge called “Prof G’s crutches to 500m Challenge“ to try and hit our target of £25,000 to support Dr Ruth Dobson and Dr Angray Kang’s COVID-19 MS Antibody Study. It is so important we get this study completed before COVID-19 becomes history. Please note that all of the money raised will go to Queen Mary University of London to support MS Research.
Good news; I was discharged from hospital yesterday morning to complete my recovery and rehabilitation at home.
My admission to hospital has reminded me what a great institution the NHS really is. All I want to say is that the NHS care I received was exceptional; very professional and full of deep caring and empathy. The staff on the trauma, orthopaedic and neurosurgery units at King’s College Hospital are truly exceptional. Thank you so much.
During my admission, some of the medics made excuses for some of the delays we encountered in the investigations and care I received during my stay. Interestingly, I didn’t really notice these delays, nor did I complain, nor did I comment on any of the issues that made excuses about; it was if they felt compelled to make excuses for the NHS inefficiencies because I was a Professor of Neurology. I simply responded that this was not a problem. What I should have pointed out to these commentators that whilst I was in hospital there was not a day when there wasn’t a shortage of nurses on the wards. In addition, many of the medical team were off due to COVID-19; either infected with the coronavirus or self-isolating due to being in contact with someone with COVID-19. People don’t realise that when it comes to value the NHS is the best healthcare system in the world. Being the best value healthcare system doesn’t mean we should accept the status quo, but rather we have a fantastic healthcare system, i.e. a platform on which to build excellence.
For readers who don’t live in the UK, when I was discharged yesterday, with medication for 2-weeks and a clear follow-up and rehabilitation programme, I didn’t have to pay for a single thing. Yes care under the NHS is truly free at point-of-care.
Healthcare in the UK, similar to other European countries, is considered a basic human need and therefore everyone should have equal access to care. This does not equate to socialism as such, which is a rather overused term. It simply means that we the citizens of the UK feel that everybody, regardless of their background, should have access to healthcare if they need it. I am a true believer in the concept of universal healthcare. Saying this there is still wide variation in the NHS in relation to access to treatments and services. This is why we started the MS Academy’s “Raising the Bar” or “RtB” initiative three years ago to tackle variance in the provision of MS Services in the UK.
Whilst in hospital I watched the last two days of our RtB 2020 meeting and it made me realise that the RtB initiative now has momentum that will truly improve MS services for pwMS in the UK. If you haven’t seen the three RtB presentations I would urge you to watch and to join us and to get involved. We also had a few international HCPs sign-up for the 2020 RtB meeting, which is good news. Why shouldn’t this become an international initiative?
As you can see I am back typing albeit very slowly in a drug-induced fog. I am only able to do this lying on my back using a pair of periscope glasses that I purchased for this purpose. As a result of my nerve and neck pain, I have to spend the majority of my day lying flat on my back in a neck brace. I am unable to bend my neck as it causes too much pain.
In addition, my fractured pelvis, which has been fixed (see below), is still very painful when I sit or walk. So I am resigned to a long slow recovery and hence I am unlikely to back to normal or work for several months.
I am thinking of setting myself another challenge to raise money for this initiative. At the moment I am EDSS 6.5; I can walk maybe 20 metres using crutches. Will you sponsor me to become EDSS 4.0 in 4 weeks time, i.e. to walk 500 m without crutches or support? I am prepared to do this if you will support me as it is critical that we get the first phase of this study done before the coronavirus vaccine arrives. What do you think?
P.S. I have set-up a Just Giving page called “Prof G’s EDSS 6.5 to 4.0 Challenge“; all of the money will go to Queen Mary University of London to support Dr Ruth Dobson’s and Dr Angray Kang’s COVID-19 MS Antibody study. Thank you.
“I have lost my triceps jerk; I am areflexic.” I told my neurosurgeon.
“So what?” he replied.”I know what is wrong with you” he said.
I then went onto explain to him that it took me a week to find a patella hammer and to get someone to test my reflexes. In short, surgical wards and even neurosurgeons don’t really need a reflex hammer to practce their art. It was pretty clear from my original CT scan that I had a C7 radicuopathy. (pinched nerve)
Prof G’s fractured C7 vertebrae
Ironically, I am in the David Marsden ward at King’s College Hospital. David Marsden was the doyen of clinical neurology and considered by many to be the greatest British neurologist of the 20th century. Would David Marsden have expected my clinical team to have tested my reflexes?
Topor as a state is not black-and-white; I am in a brief grey patch with some lucidity. The hyena has not gone away; she is now on a leash and the white lightening now runs through the leash in more predictable patterns. I am hoping to be transferred to a rehab unit for the next chapter.
The torpor of morphine and gabapentin, which is keeping the gnawing hyaena and white lightning at bay, make just typing this piece a marathon in itself.
Last Saturday whilst running I was hit from the right by a largish motorcycle and sustained a mild head injury, a fractured pelvis, a fractured cervical spine and multiple soft tissue contusions and abrasions.
My pelvis has been fixated and my C-spine decompressed and stabilised. My contusions and abrasions are recovering slowly. I have cervical radiculopathy from damage to the nerve roots leaving the spine. The pain associated with the nerve damage is quite unbearable at times; it feels is like my arm is being gnawed by a hyaena with superimposed lightning shocks under the gnawing pain. As a result, I am on continuous morphine and hence can’t function.
Prof G’s lower cervical spine.
Being on an opioid for pain is not pleasant; visual and auditory hallucinations, torpor, confusion, forgetfulness and depression. A dystopian mental prison.
Once the pain settles I will be able to start the long physical rehabilitation process.
Looking on the upside I am alive, I didn’t have a major head injury, I am not paraplegic or quadriplegic, I have had no other systemic complications and the motorcyclist is okay.
I have had an outpouring of support and get well messages which have lifted my spirits. Thank you.
Thank you so much for continuing to support our Barts-MS Coronavirus antibody study. There is little doubt that since the accident there has been a surge in donations, we need to get this study done.
Too tired to type and too painful. I will try and keep you updated.
Good news for people with MS living in the US. The National Multiple Sclerosis Society is acknowledging that autologous hematopoietic stem cell transplant (AHSCT) is an effective treatment for MS as is recommending AHSCT a useful treatment option for pwMS who have substantial breakthrough disease activity despite treatment with high-efficacy DMTs or have contraindications to high-efficacy disease-modifying therapies. The acknowledge that pwMS younger than 50 years with shorter durations of disease (<10 years) have the most to gain from AHSCT.
The big question is will insurers and national funders pay for HSCT in the US based on this recommendation or will they still need FDA approval?
The good news for pwMS living in the UK is that the NHS already covers the cost of HSCT and MS is on the list of approved autoimmune diseases for treatment with HSCT. The problem in the UK is not necessarily the access to the treatment, but to get risk-averse neurologists to refer pwMS for the procedure or am I wrong?
Importance: Autologous hematopoietic stem cell transplant (AHSCT) for multiple sclerosis has gained increasing interest in recent years. Despite the availability of many US Food and Drug Administration–approved disease-modifying therapies, some patients do not respond adequately and others may have very early aggressive disease that prompts consideration of alternative, highly effective, long-lasting therapy. The National Medical Advisory Committee of the National Multiple Sclerosis Society has reviewed recent literature on AHSCT for the purpose of making recommendations about its use based on current knowledge, as well as pointing out areas of controversy and issues requiring further research.
Observations: Studies on AHSCT have repeatedly demonstrated high efficacy and a durable outcome in people with relapsing multiple sclerosis. Recent studies have shown considerable improvement in the safety of the procedure, with much lower mortality rates than were reported earlier. Consensus is emerging about the characteristics of the best candidates for the procedure. Questions remain about the ideal protocol, particularly about the best conditioning regimen to be used to kill immune cells. Larger randomized clinical trials are needed to address the question of whether AHSCT has advantages over the most efficacious disease-modifying agents currently available. One such trial (Best Available Therapy Versus Autologous Hematopoietic Stem Cell Transplant for Multiple Sclerosis [BEAT-MS) is currently in progress.
Conclusions and Relevance: The National Multiple Sclerosis Society believes that AHSCT may be a useful treatment option for people with relapsing multiple sclerosis who demonstrate substantial breakthrough disease activity (ie, new inflammatory central nervous system lesions and/or clinical relapses) despite treatment with high-efficacy disease-modifying therapy or have contraindications to high-efficacy disease-modifying therapies. The best candidates are likely people younger than 50 years with shorter durations of disease (<10 years). The procedure should only be performed at centers with substantial experience and expertise. Ideally, recipients of the procedure should be entered into a single database, and further research is needed to establish ideal cell mobilization and immune-conditioning regimens.
In the last 2 days, you will have seen from my posts and the discussion that it has generated that there is a problem with the current MS lexicon. We need to get some form of nomenclature that addresses the confusion about what MS is as a disease and at what is the state and/or stage of MS for individuals with the disease. Knowing how to refer to people with MS is important for several reasons. It affects how they are managed, it has implications for what treatment pwMS are eligible for and it has wider implications for the MS community. The latter refers to clinical trials and for getting MS DMTs licensed for treating MS.
What best describes your MS?
Active radiologically isolated syndrome Inactive radiologically isolated syndrome
Active clinically isolated syndrome Inactive clinically isolated syndrome
Active relapsing-remitting MS Inactive relapsing-remitting MS
Active secondary-progressive MS Inactive secondary progressive MS Active stable secondary-progressive MS Active worsening secondary-progressive MS Inactive stable secondary progressive MS Inactive worsening secondary progressive MS
Active primary-progressive MS Inactive primary progressive MS Active stable primary-progressive MS Active worsening primary-progressive MS Inactive stable primary progressive MS Inactive worsening primary progressive MS
Early-stage MS Late-stage MS Advanced MS Smouldering MS MS with hidden disabilities MS with hidden progression MS with silent progression MS with progression independent of relapses
Benign MS Malignant MS Indolent MS Highly-active MS Rapidly-evolving severe MS
Etc…
I am interested to know if all this makes sense to you? I am sure I have also left some descriptors off the list. If I have please let me know.
What do you do you do when you realise that your baby has grown up!
Several years ago someone on this blog recommended launching OCTRIMS, i.e the Online Consortium of Treatment and Research In Multiple Sclerosis. I diligently registered the domain name and approached ECTRIMS for support and they said no they weren’t prepared to support an online offering and they asked if I would refrain from using the name. We explained to ECTRIMS that the reason we wanted to launch OCTRIMS was to address the inequality of access to information on MS research and treatment. We felt women, ethnic minorities, people from middle- and low-income countries and the next or younger generation was not able to attend ECTRIMS because of financial and other cultural barriers. It was clear that ECTRIMS and other large MS meetings were being dominated by a specific demographic profile. We, therefore, had to settle for the less catchy triMS.online (Treatment and Research in Multiple Sclerosis Online) instead; c’est la vie.
A big selling point for us was the environment, i.e. how do we deliver online content that is environmentally friendly and reach and maintain engagement with our target audience. When we designed our first meeting we tried to rethink the conference and in particular the online experience. It became clear that the long didactic lecture format would not work. To simply replicate the face-2-face conference would not work. Our model was TED and TEDx talks, i.e. short well-rehearsed talks that were themed, to the point and engaging. At the same time, we had to put together a young and diverse International steering committee to make sure triMS-online lived up to its founding principles, i.e. more diversity (more women and ethnic minorities) and the next generation (youth). This is why I am so proud of the fourth triMS.online conference that delivers on so many of our founding principles.
So if you have the time to attend the live meeting please register and even if you can’t stay online for the whole meeting you can come back at any time to watch the talks in your own time. We promise that each talk will be well planned, short, to the point and with a limited number of well-defined objectives.
Enjoy and please spread the word to your colleagues and friends. And a big thank you to you our supporters and the sponsors for making this possible.
Most of you will have heard by now that NICE has green-lighted siponimod for the treatment of active secondary progressive multiple sclerosis on the NHS. As the UK member of the EXPAND trial steering committee, Novartis who market the drug asked me for a quote, which sums up my opinion about the news.
“The NICE approval of siponimod to treat secondary progressive multiple sclerosis with active disease is a landmark that promises to transform the way we view and manage MS. At last, we have a treatment that can modify the progressive pathology that underpins secondary progressive MS with active disease. The ‘Forgotten Many’ is how people with secondary progressive multiple sclerosis have described themselves; but not anymore. Our challenge is to configure our NHS services to treat patients with secondary progressive MS and to manage expectations, as not all people with secondary progressive multiple sclerosis will be eligible for siponimod. However, this is the beginning of a new era in the management of MS and should be celebrated for that.”
