As promised the following are the recent result from the probiotics survey.
I think there are too few respondents to make any judgement on this data. Probiotics and microbiome are clearly hot topics and hence we will at some stage need to generate good evidence to make some sensible recommendations to pwMS. At the moment I don’t think there is enough evidence to recommend pwMS take probiotics. I would suggest using the money you save on purchasing probiotics on doing exercise; at least for exercise, we have an emerging MS database showing that it works.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.
Survey Disclaimer: No personal identifiers will be collected as part of these surveys unless otherwise stated. By completing these surveys you are consenting to the data you provide being analysed by Professor Giovannoni and his collaborators. Res
Barts-MS rose-tinted-odometer: ★★★★★ (seeing purple; a Sunday morning purple)
Could you imagine if we made the treatment target in MS a cure? This is a very contentious issue; however, based on the current dogma that MS is an autoimmune disease driven by rogue autoreactive cells we should have the ability to either purge these cells from the body or imprison them via tolerance mechanisms indefinitely. Do you agree?
After being taken to task on using the C-word (see blog post 19-May-21) I am relieved that you readers condone the use of the word. This means we can now hopefully refine the definition of an MS cure, look to see if any pwMS treated with immune reconstitution therapies (IRTs) fulfil the definition of an MS cure. Please be aware that an MS cure doesn’t mean the restoration of lost neurological function; you can be cured of further autoimmune attacks on the nervous system, but the damage that is already done won’t necessarily be repaired as part of the cure. This is why we need to at least offer IRTs as early as possible in the course of the disease, which is why we need to have the option of using IRTs first-line. I hope this makes sense.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
Survey Disclaimer: No personal identifiers will be collected as part of these surveys unless otherwise stated. By completing these surveys you are consenting to the data you provide being analysed by Professor Giovannoni and his collaborators. Results of these surveys will be presented on this blog and maybe submitted for publication.
Thank you for completing yesterday’s poll. It is quite clear that you, our blog readers, want us to prioritise the following changes to the way we prescribe DMTs in the NHS. The most important priority is for pwMS to access immune reconstitution therapies (alemtuzumab, cladribine and HSCT) early as 1st-line therapies for active MS. Please note if you have rapidly evolving severe MS (RES) you can be treated with alemtuzumab and cladribine first-line, but outside of this very small group of patients, we can’t prescribe IRTs first-line. For more information on RES vs. active MS classification system and its implications for some pwMS, I would recommend you read ‘Watchful Waiting 2‘.
The next priority is access to natalizumab, a very high efficacy therapy, as 1st-line therapy for active MS. At the moment the only agent that covers this broad bracket is ocrelizumab. My reading into this is that if you don’t have RES but just active MS, you would like more choice and not simply have one high-efficacy option first-line.
The third priority relates to treating advanced or progressive MS, i.e. getting rid of the stopping criteria when people with MS reach EDSS 7.0 (wheelchair) and liberalise the prescribing of ocrelizumab and siponimod for primary progressive and secondary progressive MS, respectively. My interpretation of the latter is that you want to challenge the active vs. inactive progressive MS dichotomy.
Finally, treating asymptomatic MS and liberalising the use of platform therapies and fingolimod is not a priority. This worries me because as we move into an area of testing and exploring the induction-maintenance paradigm we need to be able to use platform therapies 2nd- and 3rd-line. I have made the point before that pwMS are not going to be able to remain on anti-CD20 therapies indefinitely because of the potential risks; for example, as your immunoglobulin levels drop and serious infections increase the benefit-risk balance changes. Therefore, we are going to need to test de-escalation approaches to derisk anti-CD20 and other chronic immunosuppressive treatments. This is the rationale of the iTeri study that I have proposed doing; i.e. induction with ocrelizumab or rituximab followed by maintenance with teriflunomide.
I would be interested to know if you are surprised by the poll’s findings?
I wonder if the Australian neurologists chuckle when they read this sort of blog post? They have no restrictions on how they treat MS and can use any DMT, including AHSCT, as they and their patients see fit. If only the NHS would allow us to practice in this way 🙁
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
When I described in a post that I was having flashbacks, related to possible post-traumatic stress disorder (PTSD) from my accident, it struck a chord with pwMS who bravely described their own flashbacks about the way their diagnosis of MS was handled. In response to this, we teamed up with shift.ms to do an online survey of its members. We advertised the survey via the blog and many of you participated. The results of this survey were so worrying that we submitted an abstract to the Association of British Neurologists (ABN) meeting. This abstract was accepted and here is the poster for you to read.
This work made me realise that this is a serious problem and we really need to do something about it, i.e. to ensure that the next generation of neurologists learn how to tell their patients that they have MS in a way that is supportive and gives hope. We really don’t want another generation of pwMS suffering from PTSD. With my renewed focus on MS prevention, I really don’t have time to run with this programme of work myself and I am hoping some young and highly motivated person picks up the baton and makes it happen. We need a national training programme for aspiring MSologists and other HCPs on how to give the diagnosis of MS in a way that doesn’t result in PTSD. In parallel, we need national support programmes for pwMS to deal with the emotional rollercoaster ride that inevitably comes after being told you have MS.
Don’t you think it is shocking that in 21st-century pwMS are left traumatised with flashbacks because of the way their MS was diagnosed? Are you not disappointed that most MS services don’t have support structures in place, similar to those in cancer services, to counsel and support their patients when they are diagnosed with MS?
Let’s make a difference so that the next generation of pwMS don’t suffer from PTSD.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
Thank you for completing our vaccine hesitancy survey. The results are self-explanatory and it is great to see that such a high proportion of you are prepared to have a COVID-19 vaccine.
We will be hosting a Barts-MS Question & Answer session on COVID-19 vaccines and our vaccination policy from 16h30-17h30, Tuesday 23rd February. We will be live-streaming the event via our YouTube channel. If you can’t watch the event live it will be recorded and remain available for asynchronous viewing at your leisure.
We have had plenty of question submitted already, but please feel free to complete the survey below, which will remain open. The survey allows yo to ask questions in the relevant open field at the end. Thank you.
A 15-round heavyweight boxing match is a good analogy when it comes to describing our fight against the coronavirus. We have spent the last 3 months sparring and looking for each other’s weaknesses as we land a few body blows but no knock-out punch. Although we have flattened the curve we have a long way to go. The ultimate aim will be to knock-out the virus with a strategically placed blow to the head in the form of a vaccine. However, before we get a vaccine there are many more rounds of boxing left in this pandemic and sadly many more deaths to come.
It looks as if Israel has lost round 2. There has been a worrying rise in daily coronavirus infections in Israel. The failure to contain the virus has led to the resignation of the head of public health services, who said in his resignation letter that “the entire country is burning”.
At one stage Israel was being held up as the poster child of how to control the pandemic at a countrywide level. Israel was one of the first countries to close down its borders and to lock down early. The strategy was so successful that by mid-May it only had a trickle of cases. Then Binyamin Netanyahu, the Israeli prime minister, relaxed the lockdown and urged Israelis to go out for a beer and “have fun”. Does this sound familiar? Boris Johnson and his cronies are even considering giving every adult in the UK a £500 voucher to spend on the service industries most hit by the economic fall-out of the COVID-19 to stimulate the economy. Don’t you think this is a good idea? I don’t.
Based on the Israeli experience the UK is likely to have a second wave of coronavirus infections and the anticipated second surge in NHS hospital admissions and deaths. The one glimmer of hope has to be our contact-tracing system, despite its imperfections, which may be able to quell the outbreaks locally and prevent spillover into the wider population.
The tragedy of a potential second, third and subsequent wave of infections is that it prevents the NHS from getting back to a relative state of normality and recommencing routine services again. The longer the tail wags the dog more of our patients with MS and other chronic diseases are suffering from a suboptimal service. Although we are providing a remote MS service, that I am actually quite proud of, it is not ideal. Many patients are trapped in limbo on a stalled diagnostic pathway or waiting for routine monitoring MRI scans and/or lumbar punctures and the list goes on.
The following is the summary of the recent survey we completed in relation to remote MS services in the UK. I think the results are self-explanatory and there is clearly room for improvement. I want to thank you for taking the time to fill out the survey; you will be surprised that we do take on board your feedback and just maybe we can improve things going forward.
Any additional thoughts or comments from yourself? They are much appreciated.
The Barts-MS team are in the final stages of preparing a UK MS Society grant application to tackle the ‘real MS’ that lives inside you. Our focus is on studying or defining what is smouldering MS. This is a massive unmet need and refers to what we currently call inactive SPMS and PPMS. This is likely to affect a lot of you; at present, you remain in the so-called untreated MS camp. Ocrelizumab and siponimod are only licensed or reimbursed for patients with active PPMS and active SPMS, respectively. We are hoping our grant will be able to identify and/or repurpose drugs to modify this stage of MS or using current terminology inactive worsening SP/PP MS.
Our campaigns of treat-early-and-effectively, treat-2-target, zero-tolerance, NEDA (no evident disease activity) have exposed the real MS, i.e. smouldering disease. Many pwMS who are NEDA on DMTS and ‘doing well’ are not necessarily doing well. When we interrogate these sorts of patients they almost all have subtle symptoms and signs of disease worsening; worsening fatigue, cognitive slowing, reduced walking distance, dropped feet on exertion, nocturia, sexual dysfunction, numbness and clumsiness of the hand, subtle unsteadiness of gait, poor balance in the dark and when tired, increased leg spasms at night, reduced auditory discrimination, problems with night vision, etc. Do you recognise yourself?
The new norm is smouldering MS or more likely the realisation that the ‘real MS’ is smouldering MS. Our anti-inflammatory DMTs are doing what we say they should do, i.e. they are stopping focal inflammatory lesions and relapses, but are they getting to the core of the disease? I suspect not, or at least not in the majority of pwMS.
We have argued several times before on this blog that focal inflammation is not MS and that the real disease is what is driving the immune system to produce the focal inflammatory events. I suspect that effective DMTs are simply converting relapsing-forms of MS into what we used to call primary progressive MS, by exposing smouldering MS. The one hypothesis that is being explored at present is that if you treat MS early and effectively you may prevent the damage, innate immune activation and B-cell follicle formation that is thought to drive smouldering MS.
If you have MS this post will be very depressing, but as soon as the MS community faces up to the above the better. We could then start directing our limited resources to tackle smouldering MS. This is the purpose of our grant application.
We are proposing to do deep phenotyping and biomarker studies and try and discover new treatments directed at CNS B-cells and plasma cells, microglia inhibitors or activators (both need to be tested), drugs that target astrocyte and oligodendrocyte biology, antiviral trials and in the future drugs targeting ageing mechanisms.
I would like to thank you all for helping out with our grant naming survey. It is clear that from a scientific perspective PIRA (progression independent of relapses) only just won out. However, as PIRA only refers to relapse-onset MS we prefer the name smouldering MS. We will keep you posted on how things turn out. We are interested to know what the reviewers will say about the terminology and the concept of smouldering MS?
A few weeks ago I did a post on using a Citizens Jury, as a potential way to deal with the emotive issue of a lack of access to HSCT as a potential 1st-line treatment for active MS in the UK.
A Citizens Jury can help sort out the disconnect between the needs or implied needs, of the MS community, and the position of the NHS and/or the HCPs in relation to HSCT. A Citizens’ jury is when a group of people from the general public (not people with MS or vested interests) decide policy on behalf of pwMS and HCPs; in other words, citizens decide if the NHS and/or HCPs are right to withhold an effective treatment from pwMS based on its costs and/or safety profile. At the moment most HCPs feel HSCT is too risky to be a mainstream treatment for MS, whereas a large and increasing number of pwMS don’t.
The following is the results of our survey. I hope the MS Society, NHS England, ABN (Association of British Neurologists) and other stakeholders reflect on these results and consider putting together a Citizens Jury to deal with this thorny issue.
