No patient with secondary progressive MS should be left behind

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It was a privilege to be asked to write the foreword to a new policy document, “The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis” dealing with more advanced MS. If you get a chance please read the document.

The ‘forgotten many’ is how people with secondary progressive or advanced multiple sclerosis (SPMS) describe themselves. SPMS has a significant impact on those with the disease, their families, the NHS and society overall.

The lack of efficacy of many of the licensed treatments for the relapsing forms of MS has left people with SPMS with the impression they have a second, different, untreatable disease. Telling someone they have SPMS is not too dissimilar to telling someone they have a terminal illness. For this reason, many healthcare professionals steer away from having this awkward conversation. For those people on a Disease-Modifying Therapy (DMT) for relapsing MS, disease progression conjures up fear that a diagnosis of SPMS will mean them having to stop their treatment.

A further issue is that many people with SPMS are discharged from regular neurological follow-up to local community-based services and their general practitioners to manage any problems. This is despite emerging evidence that aggressive management of MS-related comorbidities and lifestyle interventions can improve MS outcomes. So many people with progressive MS are smouldering away in the community thinking they have an untreatable, but relentlessly progressive disease.

A new report challenges this assumption and makes the case for actively managing and treating people with SPMS. However, to do this there is an urgent need to expand MS services and to develop new MS centres to accommodate these forgotten patients.

The emergence of treatments to treat and modify the course of progressive MS will require a retooling of MS centres and services; an increase in MS neurologists and specialist nurses, more dedicated MRI time for monitoring patients and additional ancillary services to address the massive unmet need associated with patients who have greater disabilities and associated comorbidities.

This report touches on the many facets of managing SPMS and the forgotten many and how we need to find them and offer them a holistic service to improve their quality of life, improve their neurological outcomes and at the same time reduce unnecessary and preventable utilisation of healthcare services. This report is a call to arms for parliamentarians, policy makers, NHS Providers, commissioners as well as the MS community to think differently, work differently and to now reconnect with the forgotten many.

No patient with secondary progressive MS should be left behind.

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

25 comments

  • To use the words (one word changed) of David Lammy MP from yesterday “We need action on SPMS not more reports”. The report is just smoke and mirrors – moving the deckchairs around as the Titanic sinks. Ask anyone with Progressive MS what they really want and they will say therapies to stop worsening disability. It’s the knowledge that next year will be cane, 3 years later manual wheelchair, 4 years later electric wheelchair….. This inevitability is a killer (and MS researchers are surprised when those with SPMS suffer from depression!). Restructuring of service provision, glossy leaflets…. will never replace what is really needed – effective treatments to stop disability worsening. Why don’t the researchers / neuros / MS Societies understand this

    • I am a patient with SPMS and HIV.

      I know that the use of Ibudilast works wonderful for SPMS.
      I use for chplet months very effective in improve behavior, energy, mood, sleeping, better cognitive, focus, able to do some tasks during the day, witch otherwise would not be possible for I being in bed and in exauation.
      Ibudilast works in all inflammation brain and body and it’s proven being anti virus and reduce brain atropy.
      My problem is no access to ibudilast anymore, that was well proven to me from using for 6 months with great improvement for Multiple Sclerosis.
      I would not be afraid to continue using so good component as Ibudilast I’m this CoVid-19 long years to be around the entire Earth, minimum 3 years more in continue contamination of global population.
      But with Ibudilast is safer reducing the brain higher inflammation.
      I would like to have free access to minimum 30 mg of Ibudilast per day.
      It’s works control flare-up and improve quality of life.

  • I agree we are the forgotten ones but after trying many Dmds with the blind hope of stopping ms you realise nothing will. We also disconnect accept the fate, we are also to be blamed . We have reached a difficult phase many of us basically quadraplegic Unable to do anything. We are more realistic do not go into fantasyland.

  • Why haven’t there been clinical trials to treat secondary progressive ms with alemtuzimab, the most effective dmt to date? Surely its in Sanof commercial interest? Also given early treatments with effective dmt then secondary progression is a thing of the past? Also primary progressive diagnosis is just years of benign ms until symptoms present as primary progressive. Can you get primary progressive at 20 years old? If so then slow/smouldering theory is incorrect or incomplete.

  • I started with MS in early 20s, after a very brief “flare phase”, things settled to a slow, slow burn. Was diagnosed only in 30s, as PPMS.

    So as far as the medical establishment is concerned, I am far too late to the party.

    I hold out hope for neuroprotectives, not another report, literature review or conference.

  • Most people with RRMS will go on to develop SPMS. There really is no treatment for us. I’ve done total immune ablation (while still relapsing progressive), intrathecal methotrexate for 2.5 years and most recently Ocrevus. I’ve done numerous diets and supplements. I have a family member with ALS; right now the lack of treatments and progression of our diseases seems similar.

  • Until the point is reached when highly efficient drugs are prescribed the moment a patient has MS then advanced MS is a fact of life. My niece had 2 rounds of Alemtuzamab after several relapses. This stopped any new symptoms of MS but her existing problems have not gone away, in fact they are slowly getting worse. It is up to her to find solutions to her fatigue and bladder problems.

    I have advanced MS with many visible and invisible disabilities. My wheelchair awaits me but I struggle on with a 4 wheeled walker. I am very lucky to have found departments of the NHS that can help me to maintain an acceptable quality of life.

    The door to providing better support and assistance to people with advanced must be opened and the room filled with better furniture across the whole of the United Kingdom. I am fed up with being ignored, even my MS consultant cannot see me for more than 15 minutes a year. Writing reports and making recommendations is all very well and good but isn’t it time for action and improvements to the existing broken system

    • Well said. I am anom who made the comments 10.26

      For clarity Prof G, do highly effective dmt.change the course of.ms?

  • As a Fully paid up member of the forgotten many, I truly hope, but rather doubt that things will change. Thankfully, I’m not effected cognitively ( yet). My MS activity is mainly In my spinal chord. I attempt to retain good cognitive function, Through academic learning, volunteer teaching, legal representing folk at benefit tribunals etc etc. For the 16 years as a RRMS’er I would have become a rich man if I had a pound every time that I’d heard the words tantalisingly close. I was the first generation to be prescribed dmt’s 20 years ago. Sadly smouldering away in the background is the real beastie!. The abrupt decline in my health was I suspect “thanks” to the DMT’s that reduced relapse damage, making a less smooth transition from RRMS to SPMS. I suppose like a rusty car there comes a day when there is more rust than metal, fails MOT, not worth fixing, scrapyard! I’ve been recommended for the chariot MS trial. Even before Covid it was delayed endlessly, I’ve tried tirelessly and spent a fortune attempting to find anyone to privately prescribe me Retuximab, but without success. I’m not any kind of crazy zealot and understand at best these drugs may possibly slow progression, and at worse do nothing with potential side effects. They both have impressive long term data concerning SPMS. Sadly then and definitely now, neither are available for ‘love nor money’ I will still munch my vitamin D, drink my lovely bedtime biotin cocktail, swim 4K a week (with my arms) when facilities open again. But I’m very sorry to say that my hopes are really now just for others, The fire in my belly is out and I have no fight left. So what will be will be! Please Prof G stay on their case and champion this one. It’s a bleak space to have to inhabit for us ‘forgotten many’ and it can go on for years and years!

  • We shouldn’t – but the reality is we are
    though aren’t we ?
    Good comments peeps, I felt I had to chip in
    This illness is treated as two separate illnesses, instead of one incurable degenerative disease. The Relapsing stage is one (when the guinea pigs are niave young and resilient) and then the progressive, unrelenting stage; regardless of the DMDS – which claim to slow down progression; but ultimately is it worth it…? Never mind the papers, conferences, data analysis, figures – what are the real actual patients saying?
    and when does the fight and fire finally fizzle out ….
    The R/R phase is the honeymoon period frankly; when there’s a rush to get on a drug and endless discussion about being ‘newly diagnosed’ and the ramifications.
    But when you have had it for years and are battle weary and fragile mentally and physically- the support drops off, friends and family get as bored as you; the fight to ‘be your own advocate’ wanes, and the realisation that things are only going to get worse; regardless of how fit/slim/active(living like a neurotic health freak) you have been, sinks in
    Words like ‘cure’, ‘reversal’ and ‘restore’ are the only ones that matter.
    It’s a sobering, challenging and lonely place.
    Ah the irony

    • Hi Feathers
      I’m H. Thanks for some important points that I’d missed. ‘Family getting bored’ we all make ‘sickness and in health’ promises and ‘we’ll fight this one together’. I had 20 years to prepare, but when the decline hit I had entirely underestimated the impact. My partner and I love each other dearly, but is it fair to drag her down this bleak road too? So many massive issues to consider when you’re at the most emotionally fragile point in your life, still just capable of making changes, but on the cusp of losing the ability and independence to control your own life. It’s a lonely old place. I think That the the current situation has has maybe given us time to maybe ponder a little too much?

      • “I think That the the current situation has has maybe given us time to maybe ponder a little too much?“

        This is a good point. In reality, once MS starts to bite and progression does its stuff, MSers are in lockdown. Healthy, independent people moan about lockdown, but for many MSers this is their permanent life – limited social interaction, reliant on home deliveries, stuck in front of the TV… is Covid 19 lockdown any different to their usual life. At least the virus will loosen its grip and healthy, independent people can go back to a normalish life (long walks, game of tennis, shopping spree). Not much will change for progressive MSers. The services will most likely get worse – MS charities have funding issues and the NHS neuros will have a backlog of appointments to get through. This blog (great blog) has been around for c.11 years. Has anything really changed for progressive MSers? I expect the views of MSologists / MS researchers and those with progressive disease will differ considerably. My GP visits two women in their 30s who have progressive MS and live in care homes. I find this scandalous – those who make their living from this disease should hang their heads in shame.

  • I started out in the MS universe looking into neural plasticity (neonate to 20 years of age) until I came across a chart in a study listing, among other things, causes of death for the MS brain tissue sections used in the study. As strange as this sounds, I was shocked to see that cause of death for the individuals concerned were “respiratory failure,” “bronchopneumonia” and “sepsis.” Age range was 31 to 55 and the thing seemed to have a routine sense about it.
    Yes, disability is a sure thing for someone with MS living out their lifespan but this lifespan is supposed to be more or less the same as a non-MS one (75-80 years) minus a few years. We can’t be losing people in our community to complications such as uncal herniation, pressure sores etc or environmentally acquired lung infections as okay. People with MS have enough to worry about without losing their lives to preventable causes, especially at a young age. So in terms of not being forgotten, I will complete the quote from the article to say: “This report touches on the many facets of managing SPMS and the forgotten many and how we need to find them and offer them a holistic service to improve their quality of life, improve their neurological outcomes and at the same time reduce unnecessary and preventable utilisation of healthcare services — and premature death.” I have since become an advocate for directed care for MS patients. The vulnerabilities are known in this population and don’t require anything more than a little prophylaxis here and there.

    • Hi H
      Well I guess you have to be guided by said partner and if you expect them to be your carer?
      Losing hot lover status is another blow indeed but a kind, empathetic partner will indeed go the distance
      I’m pondering, because this article inspired such pondering – not because the lockdown has given me more time to think – I’m in lockdown anyway duh because I’ve been at the sp stage for 7 years
      A profilatic may be keeping me alive indeed, burying heads in sand is why we are in this sitch in the first place

      • Hi Feathers,
        You point out where I should have been more clear. It’s a good point and thank you. I wrote in my post on the hospitalization issue for MS — where the premature deaths among our number would typically occur when they occur. I was assuming that the list of cause of death for MS patients I’d come across, occurred in a hospital e.g. respiratory failure for a 31-year old MS patient. Premature death for MS should not happen if at the very least, prophylaxis for seizure and +ICP etc are provided as routine hospital admission in time of relapse. Your comparison with a red hot lover/empathetic partner is exact. I dunno, but to me, basic is pretty darn fabulous as a start. Lots of good science can come out of *basic* and empathy. So can the preservation of life. I didn’t want this to be forgotten in the mix and spoke, I guess to the greatest disability which is death.

      • Hi Feathers
        I’m not concerned about red hot lover status although you did brighten up my day! the red hot stage passed long before MS really kicked in (kids put pay to that one!) The question of involving partners in the journey was was more of a rhetorical example of me (I’m sure others too) attempting to imagine the future. The biggest fear for me is losing control. I understand that it happens incrementally, so is less noticeable but there are noticeable mile-stones. Sorry to hear that lock down has not changed your world that much. I am fortunate enough to be to still be able to use a Mobility scooter and can drive an adapted car, therefore retaining some independence, so lockdown has had a noticeable change on my life, perhaps bringing the future into clearer focus, hence my pondering.
        Rob Sides
        I’ve seen some tragic cases of people that I know withSPMS, One dying of a UTI! Infection not taken seriously, lab sample lost in the system. Happened to be E. coli got into the bloodstream via bladder reflux, sepsis and died. Another died of twisted bowel due to a compaction. All so preventable with antibiotics or regular reviews of bowel management. I always ask my GP, If l was a person without MS , what would be your course of action? On a number of occasions, the plan changes! With or without MS I’m a 50 something year old bloke, with the same risk factor (or slightly higher) of developing other ailments. So easy to blame MS for most things.

        • Hello H,
          Your comment “With or without MS I’m a 50 something year old bloke, with the same risk factor (or slightly higher) of developing other ailments. So easy to blame MS for most things” is right on the button. Your observation has caused me to really drill down into what cannot be forgotten about people who have MS–all kinds of MS. It cannot be forgotten that MS is a brain injury. Like the engine room in a ship, the brain keeps us afloat. Forgetting about the cranks, gears, oil and mechanics is done at the peril of the craft and all who sail upon her. I think that among all the immediate causes of death (line “a” on the death certification) respiratory failure is disturbing. This cause of death is unique to the brain stem and one where the brain has to be really damaged for respiration to fail. There are many and all ways to prevent this from happening when MS is involved. Put simply, brain injury caused by demyelination comes with loads of time on everyone’s side to enact brain preservation measures. MS is great… it’s not a car accident! No one with MS should be dying from respiratory failure. Yes, to all other ailments and along with the rest of the population, but not respiratory failure. I put forward that the first thing not to forget is that there are tight interactions between cerebral and respiratory dynamics. In particular, the central goal is the prevention of hypoxic secondary insults through the maintenance of an adequate cerebral perfusion pressure and cerebral oxygen delivery. The MS-type brain injury is one where they see you coming, so respiratory failure/death should not go with MS. Have those prophylaxes ready folks, seizure prevention, no sedations without regular rousing, mannitol, oxygen… MS relapse is brain injury time and it’s the real easy one.

          • Hi Rob
            Ive alway been interested in the role of oxygenation and MS, I have a friend with connections with the diving Diseases research centre. I know a number of MSers have used their pressurisation facilities to highly oxygenate themselves. I spoke recently to a radio therapist, his team have devised a method, through patient training and massively oxygenating so that they can halt breathing for several minutes, so that targeted radio therapy can accurately target areas in a still lung. He mentioned that he had feedback from a few patients that had MS about how the training sessions with oxygen had made them feel great ( relatively) I personally have been an avid swimmer for the last 10 years. Although it is mainly now using my arms. until lockdown I was doing 2k twice weekly, with the occasional full drill session. I kind of roll in and out of the pool like a seal, but once in can still manage serious upper body cardiovascular exercise. I train in the evening as it tires me out, so straight to bed afterwards. But for 2/3 days post swim I feel great (relatively). I’m sure this is down to oxygenation and an hour of sustained high blood flow. It’s a pass time that gets harder and more limited as i progress. But I intend to continue for a long as possible. As it’s a training Pool only and easy to ‘Police’ it is planning on limited reopening soon. I would hate too stop. I’ve found it more useful than any drug or therapy. Quickly back to ailments. Waking up feeling truly dreadful , is the norm for me occasionally. MS and it’s effects could can be sited for most symptoms of almost anything, hence unnecessary deaths.

  • I absolutely realize that I’ve deviated from the theme of this post but it’s the word “holistic” in the report that keeps me here. Prof G, as a MS & Preventive Neurology thinker is also a magnet for my type of grass-root tendencies. What I should do is cough it up and be done for this post.
    For “holistic” and “preventive” to work, I figure at the very least we need to get the death receptor issue (DR5) made familiar to everyone concerned. Quality of life has a huge component of knowledge and understanding in it. Borrowing from the research:
    Hypoxia-ischemia (HI) is an important cause of perinatal brain injury both in term infants suffering from intrapartum asphyxia, birth process sedation and in preterm infants exposed to hypotensive events. The pathophysiological mechanisms are complex and processes such as apoptosis, necroptosis, mitochondrial impairment, oxidative stress, and inflammation are involved. Inflammation induces cell death after HI […] TRAIL signaling is important for neuronal cell death after neonatal HI. TRAIL and DR5 are dramatically induced after HI with TRAIL itself toxic to neurons. Another key finding is that neurons and oligodendrocyte progenitor cells have different sensitivities to TRAIL, oxygen and glucose deprivation and proinflammatory cytokines coding varying effects on other biological processes such as differentiation and myelination which are critical in the context of the developing brain.
    (Tumor necrosis factor-related apoptosis-inducing ligand (TRAIL) is a member of the TNF family. The interaction of TRAIL with death receptor 4 (DR4) and DR5 can trigger apoptotic cell death).
    “Differentiation” is a product of neural plasticity alive and well from birth to about the age of 20 when MS usually manifests.
    Let’s prevent MS from start to finish by everyone knowing about the basics. Environment (e.g. obstetric healthcare) has to be brought in to the mix and the 21st century. We cannot forget that a baby is a person too.

    • And breathe………………………………………………………………………………..

  • Here is an expert being sympathetic to MS sufferers and talking great sense, more positive thinking people like this we need in our lonely uncaring World.
    Sinically.
    Garry

    • You have all made very good points ..I think?!
      I will, however, go back to the fact that it is all one illness and indeed if I had had more of a grasp of this then, I would have taken evasive action sooner. (Like get a bungalow) As it was, I threw out an unsympathetic and uncaring husband and live the highlife for many years, ignoring pesky symptoms and not buying into the whole DmD debacle so I could have children…
      And do you know, I am jolly glad that I did; because now life is very very different
      I have gone from being the darling of the Caribbean and south of France, dating rock stars and having my own business, walking 6000 steps a day – to being diagnosed with secondary progressive MS, ( it munched my cerebellum) cerebellum ataxia ( Which is no fun and also incurable and degenerative) not being able to work etcThen last year following a few years of self catheterisation, I got an anti-biotic resistant bug …
      Five months of different antibiotics and feeling absolutely awful ensued….
      That pretty much put a stop to my already limited gallop….
      6000 steps went to 600, went to 60 went to 6…
      The most inconvenient tremors and spasms affecting my walking, preparing food, writing, sleeping …
      Talking is an effort, typing is an effort, thinking is an effort, I can’t control my body temp so I’m useless when it’s warm and in pain when it’s cold…and I have been left with a bladder like a sieve
      I have to limit my liquids for at least two hours before bedtime, whereupon I stop breathing and wake up not refreshed,not raring to go
      And to top it all off I have had a stroke thanks to my tiny veins and inactivity due to the uti
      I soldier on, (even a relative has asked me when I am going to give up…)
      My day consists of Pretending I am better than I am, praying for bedtime, dealing with my water works And making sure I stretch and eat… Beyond that I am fit for nothing
      It’s heartbreaking for my children, for me, my friends and ex’s …
      So I keep my self to myself now and just think what will be will be… No one is going to find a magic cure in my life time and doubtless they will still be talking about it, making lots of money and pontificating for many years to come
      In my humble opinion…

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