Happy New Year. We hope you all had a good festive break. The following are some of what we at Barts-MS want to achieve and work towards in the next decade.
#PreventMS
We have little doubt that MS is a preventable disease and by tackling many of the environmental risk factors we may be able to turn around the MS epidemic and see a fall, or at least a levelling off, in the incidence of MS. This does not mean the prevalence of the disease, i.e. the number of people with MS, will fall. As we get better at managing MS more pwMS will be living longer and healthier lives. We need the whole MS community to get behind #PreventMS
#ThinkCognition
The MS community will accept that MS is foremost a preventable dementia. MS-related cognitive impairment will become a major treatment target, both symptomatically and for disease modification. Physical impairment won’t go away, but it will become less of an issue with the wide adoption of early effective treatment to prevent disability. We will shift our treatment targets away from focal inflammation and relapses to target the #RealMS, i.e. smouldering disease. Smouldering MS will become the new frontier and we want to be one of the pioneering groups working in this area.
#CombinationTreatment
We now realise that monotherapy will only get us so far in terms of reducing the burden of MS. We will need to explore combination therapy strategies and learn from our colleagues in other disease areas. Hopefully, the regulators will understand the need to move to a combination treatment paradigm and create the necessary regulatory framework for this to happen in.
#ThinkHolistically
It is clear that the philosophy of marginal gains will need to be adopted to maximise the brain health for the lifetime of people living with MS. DMTs are clearly not enough. This will mean reconfiguring MS services to tackle comorbidities and to help pwMS adopt the necessary lifestyle changes to make small, but important, differences to their outcomes.
#ThinkMetabolic
This is a new theme for the decade. We are our metabolism and MS is first and foremost a metabolic disease. Can we hack our metabolism in a way that will improve MS outcomes? I am sure we can and this will be done using diet, supplements, exercise and medications to alter our microbiomes and stimulate our metabolism to work with us with the aim of maximising brain health. There is good evidence that caloric restriction, intermittent fasting and ketogenic diets do this already. Can we make this more scientific? Can we add medication to the mix to make sure we are getting it right?
#RaisingTheBar
The next decade will see massive transformation in the way we provide NHS services to pwMS. Gone will be the old Victorian model of healthcare and it will be replaced by a network model that is run by people with the disease and not the HCPs. The current healthcare model is broken and unsustainable.
#ThinkSocial
The MS community will realise that the social determinants of health (SDoH) are as important to pwMS as they are for other disease areas. We will see service developments in the NHS to tackle SDoH and social isolation. We are not sure of what format these will take, but anyone who ignores the SDoH will not be able to maximise their outcomes.
#ThinkHand
We will see the completion of the #ORATORIO-HAND and #CHARIOT-MS trials and the recognition that MS is modifiable throughout its disease course. We anticipate a whole raft of other trials starting that will target upper-limb and hand function as their primary outcome. We anticipate DMTs being started and continued in advanced MS (EDSS>=7.0).
#MSDiagnosis
We anticipated that the McDonald diagnostic criteria being challenged by technology, in particular, biomarkers, and having to rapidly adapt to a changing landscape. Asymptomatic MS will be a new diagnostic category. We will be providing screening to high-risk individuals and diagnosing and treating MS in the asymptomatic stages.
#MS_is_1_not_2_or_3_diseases
The MS community, including the regulators, will realise that MS is a biological disease and that salami-slicing up MS into pseudo-disease categories is doing pwMS a disservice.
#DemystifyHSCT
The wider MS community will adopt HSCT as a very high efficacy DMT for treating MS. HSCT will become just another DMT on the list of potential treatment options. Many of the head-2-head studies comparing HSCT to licensed high-efficacy licensed DMTs will show that HSCT is at least as effective, and probably more effective, than our licensed DMTs but will come with higher risks. The wide adoption of HSCT as an MS treatment option will mean that pwMS won’t have to travel abroad for treatment.
#GRAD_Initiative
The international community will get behind the Grass-Roots Affordable DMT (GRAD) Initiative to make sure people living with MS in resource-poor environments get access to MS services and affordable treatments. This has to happen as soon as possible; we can’t expect pwMS living without treatments to have to wait a decade.
CoI: multiple
Happy New Year Prof G, I’m coming on Tuesday to see you or a member of your team. I hope I see you as I have been getting all my paperwork together to blow your brains away. I’m so excited about being able to discuss things that we seem to be on the same level about. See you soon hopefully. xx
What about rehabilitation? Do you see room to improve rehab?
Yes, rehab is essential for improving and maximising outcomes. Again it is not our core strength, but it shouldn’t be ignored.
Happy New Year.
I hope prevention includes an EBV vaccine.
“We will shift our treatment targets away from focal inflammation and relapses to target the #RealMS, i.e. smouldering disease” …… “The wider MS community will adopt HSCT as a very high efficacy DMT for treating MS.” Aren’t these contradictory statements? If smouldering MS is effectively tackled, will there be a need for DMTs targeting relapses and focal inflammation?
I’d like to see more on remyelination and repair.
Best of luck. Don’t spread yourselves too thin and try to do more joint work with other MS research centres.
Re: “I’d like to see more on remyelination and repair.”
This is not our core expertise. However, if you treat MS early and effectively you won’t need remyelination therapies nor repair therapies. Now wouldn’t that be nice 😉
I can relate to this EB Virus as I always suffered with this as a child. I would like to know what damage was done by this virus. As there are so many symptoms relating to M/S. xx
Re: ” If smouldering MS is effectively tackled, will there be a need for DMTs targeting relapses and focal inflammation?”
Yes and no! The statement that ‘smouldering MS is the real disease’ is a hypothesis. Some think early adaptive inflammation (T-cells and B-cells) set-up smouldering MS and that aggressive early treatment will prevent it from happening. Others think smouldering MS is the disease and that the focal inflammation is in response to smouldering MS. This is why we have to hedge our bets and see what the data will show.
Clapping emoji is what I need here. This is great. Challenging, yes, also inspiring. Let’s do it
MS is caused by Canine Distemper Virus (CDV). It is likely the only cause.
Vaccinating humans against CDV will make MS largely a disease of the past.
Happy new year!
#RealMS
Would like to see a lot more on this.
But I am really not sure the Barts Team are so fired up by such research, really believe in it. Is it not the case that the aim is more to try to get rid of what amounts to little more than a nagging doubt? I worry that bias may creep in…
I think it is short sighted of the NHS to not provide neurological physiotherapy for pwms. I believe it would be cost effective and improve QOL.
Ahhhhh, Happy New Year to you Prof G and all the HCPs – reading your post made my day! The optimism, the purity of what you have written, should be sent to all Healthcare workers all over! The truth and acceptance of how what & why with regard to MS, especially progression & largely understanding cognition, should be digested, obviously on an individual basis I agree, but nonetheless should be treated with as much energy, compassion & thinking as you post confirms.
One thing that came to my mind over the holidays, is that the disease can be answerable to a lot of minor, albeit upsetting & unpleasant, health problems. We should have a multi-disciplinary team set up from the outset & automatically given time, patience, along with preventative measures in place too from the beginning. My own experience is that there have been some small changes in attitude with my care, that I feel have been beneficial, so I thank my local HCPs for this and I too am optimistic that if we all communicate and keep thinking outside the box, we can achieve lots. Please, instead of robotically doing everything that we are told, question and act on our own instincts (especially listening to patients – not to moan and groan, but work with them to support and move things along). Vaccinations, preventative medication if your DMDS cause x,y,z, urgent response if you’re having major neurological symptoms, understanding the pros & cons of all treatment therapies & work to help spasticity, muscle wasting/fatigue and most importantly support and understanding cognitive difficulties. Lastly family, carer support – occupation health involvement and psychological support and quash the feeling you can’t do this – but you can do this – help with understanding how to keep your Brain Health.
My elderly Mother was in A&E 9 hours (we didn’t mind this so much as she was given immediate medication) but was ignored & left to wet herself, she needed a bedpan) even though my brother and I were trying to gain help – no one had the time or wanted to look at us, help us or action her repeated requests that she needed to go, but were busy writing up charts and sitting at screens, and one section which was quiet – sitting down with nothing pressing but couldn’t help, as it wasn’t their section! There said it! It feels awful criticising our lovely NHS and staff, but really, surely and how frustrating and awful for my Mother who had been diagnosed with pneumonia and is ‘old school’ won’t complain, or passes it off as ‘never mind!!’ Having experienced not the lack of care but a disjointed & unnecessary in my eyes screen work – several times with my Mother in hospital over the past year – I don’t want to reach my elderly age and having MS, be left in my own wee or ignored or left in a drafty bay for 9 hours. Please let’s do all we can to make the changes – attitudes and time! It is not always about money and more staff! (There were lots of staff available but just seemed unorganised & unwanting to deal with bathroom issues).
All that said – Happy New Year to everyone – let’s be nice to try and help each other to conquer MS so that we can all live a more proactive and happy life 🙂 We are all going to getting old regardless if we have a disease or not!
An uplifting and encouraging post. I dearly hope reaching fruition/making progress in these areas happens earlier this decade than later. I also hope other HCPs and other services across the country and internationally come on board and adopt all of the above.
Perhaps Aaron Boster vids ‘old school neurologist versus new school neurologist’ should be required viewing in respect to some of what you’ve listed – certainly generates a smile if nothing else😆
I think you’d be in your rights to add another post as to everything you’ve achieved in this last decade.
Happy New Year!
Always interesting and thought provoking. Happy New Year!