Barts-MS rose-tinted-odometer: ★★
I am increasingly being asked about what is going to happen to MS research and clinical services post-COVID-19. The question is being asked as if I am some kind of futurist or prophet. I am not. My response is let’s focus on the here and now. The following on the issues that need to be addressed this year:
- Untreated or under-treated MS. There is has been a drop-off of about 30% of new-starts on DMTs. This means people with MS are waiting in queues to be diagnosed and offered treatment.
- Far too few people with PPMS and SPMS have been through the screening pathways for potential treatment with ocrelizumab or siponimod, respectively. Some MS centres have yet to start their progressive treatment pathways.
- Vaccine hesitancy: too many pwMS are refusing our offer for a COVID-19 vaccine. Why? What do we need to address vaccine hesitancy? The message #GetVaccinatedASAP is maybe too flippant and doesn’t take into account the complexity of the issues.
- Neuro rehab: so many of my patients have deteriorated because their rehab services are on hold. Does the NHS have the capacity to deal with the backlog?
- Mental health: so many of my patients have mental health issues as a result of lockdown. Who is managing this avalanche of depression and anxiety? What can we do about social isolation and loneliness?
- Symptomatic therapies: where do I begin? The biggest one is bladder and muscle botox services. So many of my patients are waiting for these services to restart; they are in a desperate state with bladder problems and spasticity. Wheelchair services? Orthotics? Falls prevention? Bone health? Continence services? Swallowing assessments? Dietary advice? Comorbidity screening and management? Etc. It is not that these services are not running, however, many are running at half capacity and need really need to be face-2-face to be done properly.
- Monitoring: so many patients are waiting for annual MRIs to assess treatment response? How many have EDA (evident disease activity) that is being missed? Cervical smears as part of cancer screening? Blood monitoring etc.?
- Social services: how many people with MS are waiting for housing assessments or adaptions? How are we going to address social determinants of health? Poverty? Inequality? Addiction? Alcohol consumption has soared during the pandemic; pwMS are not exempt.
The other elephant in the room is the manpower shortage. Many NHS workers are taking early retirement because of burn-out. Yes, many of us are simply tired, depressed and worn out. How are we going to do more, much more, with less staff? This is not unique to MS but applies to the NHS in general.
Clearly, there is MS research that needs addressing. Many trials were halted or even terminated early because of COVID-19. Can we resuscitate these studies? Who is going to cover the funding shortfall to cover the extension costs of these trials?
I am told that charities are down about 40% in their fundraising. Less fundraising less priming of research ideas, less innovation.
At least the pandemic has driven a rapid adoption and investment in new technologies, which is likely to increase productivity in the future. I see no reason why the productivity gains won’t have a positive impact on MS services and research output.
One of the advantages of the pandemic is that I have had quite a bit of time to reflect on things and will come out of the COVID-19 more focused. I have learnt to say no and will continue to say no to many things related to MS. My time left to make a difference to MS research is relatively short and I want to make a real difference, which is why my focus is going to be on EBV, the viral aetiology of MS and MS prevention.
Please don’t get blinkered about the impact of DMTs on COVID-19 and vaccines; these ‘micro issues’ are really tiny relative to the ‘macro issues’ highlighted above. We seem to be missing seeing the forest for the trees. Yes, the mountain looks big and impossible to scale, but unless we start climbing it today we will never reach its summit.
Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
You touched on the bladder issue again in this post and in an earlier post you mentioned antiseptic bladder treatments, is this hiprex and do your patients benefit from this rather than prophylactic antibiotics?
You have also mentioned previously about home urine monitoring.I assume you are referring to dip tests. Could you elaborate on this further please so I could speak to my GP and neurologist. Thanks in advance
“At least the pandemic has driven a rapid adoption and investment in new technologies, which is likely to increase productivity in the future. I see no reason why the productivity gains won’t have a positive impact on MS services and research output. “
I believe there is more work required here to assess if these new technologies actually improve productivity. This is perhaps easier to see for research where experts are jetting off around the world, but is there any proven statistics that a video consultation is as powerful as a face to face consultation? I do not mean can more patients be seen in a working day or how much time is saved for clinicians and patients. My analysis would compare how accurate the outcomes (missed diagnosis or incorrect diagnosis for example) against the true condition from an expert panel with limitless resources.
There is a desire to treat early and hard, but if diagnosis is delayed until a major relapse that puts a person in hospital; is it already too late?
It must be really difficult for Neurologists, but surely we need to take an evidence based approach. The DMTs have placed requirements for monitoring. This has caused MS Nurses to have to spend more time with pwMS on DMTs. While follow up to blood tests only being actioned by exception may be efficient, it does little to reassure those of us with low lymphocytes where different centres appear to have different action points.
In summary take care with your assumptions.
Slightly depressing post. There must be something positive to look forward to in the world of MS research!
Can we look forward to any breakthrough research / positive trial results from the AAN conference next week?
I see that most of the big pharma companies have late stage trials of BTK inhibitors for relapsing and progressive MS. Is this a promising area?
Can we expect to see more results from the work started by Prof Pender to address ebv in MS patients?
“My time left to make a difference to MS research is relatively short and I want to make a real difference, which is why my focus is going to be on EBV, the viral aetiology of MS and MS prevention.” Drop the prevention bit (the stuff on obesity, smoking…). Others on the team can take this forward. I’d like you to focus on therapies which address ebv for patients who have MS. Your anti-viral trial with Prof Gold bit the dust and another trial to test another anti-ebv agent has yet to materialise. We need a new way of working to get these trials started and completed. I’m bored of the same excuses being pedalled – funding, problems recruiting, wrong trial design…. MS research is slow because those involved follow the same tortoise pace processes / methods and hide behind safety as an excuse for not rocking the boat. New technology and AI should be embraced (and bow ties forbidden) so that the goal of stopping progression can be achieved by 2025 (rather than 2050).
Amen
are we supposed to have blood tests after Ocrevus etc?
First I’ve heard
I am on Tecfidera and do not know the details of regimes for other treatments. Regardless I suspect some form of surveillance is required whereas if you are not under treatment you may well find your supposed annual reassessment takes longer or drops off the to do list. The people with long term MS fall off the radar and assume there is little that the MS team can do for them (particularly those from the pre-DMT era).
1 blood test before treatment for B cell subset baseline; 1 blood test 2 weeks after treatment to ensure depletion and immune impact; 1 blood test 2 weeks before the first full dose check if B-cells reappeared before next treatment.
other than the bloods taken before the first half dose, never had any of the others done.
Prof G—–is that normal/standard procedure?
Once more; I agree with Sid.
Am pleased however that your enforced reflection period had taught you to say no. It is easier said than done. PwMS need to use this to help with ‘self-care’ and remind ourselves that No is a complete sentence 😉
Sid is not one of the sheep that willingly turns the page on another calendar year only to find that nothing is done in progressive disease. But I’m afraid that there is no urgency (except prof G and a few others) by Pharma and progressive MS. Unfortunately the lack of resources for individuals is not enough for large trials, so we get the same RRMS trials because that is where the money is. 😒
Well I for one am glad to hear you have decided to focus your efforts on the aspects of MS that you are so passionate about. (i.e. EBV, the viral aetiology of MS and MS prevention)
Many of the commenters on this post must have forgotten you were recently run over by a motorcycle. Do they have no shame? No empathy? I guess their selfishness has taken over their better judgement.
Clearly Prof. G has been struggling with balancing his personal recovery (FROM BEING RUN OVER BY A MACHINE!!) with his professional drive, the pandemic, and his desire to help his MS patients. Maybe these shitty commenters should be showing some gratitude to Prof. G and Mouse Doctor for providing them with a FREE blog!!!! A blog that provides FREE access to the minds and thoughts of the best MS doctors and researchers in the world.
If one does not like it……..do not come to this blog anymore. If what the doctors/researchers say in their posts upsets you…..do not come to this blog anymore. Go start your own dam blog if you do not like the content or ideas on this one. Or better yet, you go find a cure for MS. However, I will not sit by and have all you assholes bash a good man who has helped us all in some way and dedicated his life to MS.
This blog has been my lifeline and kept me from going down some very deep and depressing MS spirals. So please, show some respect, empathy, and gratitude. All the negativity, selfishness, and whining must stop.
Nice one Tommyboy. My sentiments exactly
I agree 100% Tommyboy
Ditto Tommyboy! This made me think about my recent regular neuro appt, i had an interesting converstation with a Fellow from the teaching hospital, a bright young woman who wants to dedicate her career to pwms. After a thoughtful discussion about my medical issues, she looked at me and sincerely stated that she was sorry she could not offer anymore. I told her that initially after my diagnosis I came to drs with expectation they would cure me, and I was very displeased and fearful. But overtime, I realized that I could seek out drs to educate me about my disease, symptoms, available treatments,, and strategize with them how to live my best life possible. I take responsibility for self advocacy but am very grateful to have had certain drs hold my hand through the storms and guide me forward. I pointed out to the Fellow that she had done just that. As does Dr G, and his staff. For this reason I suggest that When one gets frustrated by MS, ask what is it that you really need to thrive and do you seek it?
Apologies. I took the Aftermath to refer to the implications of post COVID to the MS community.
I acknowledge the points made and that there is an enormous backlog to be addressed. It is good to see the points so ably articulated
I believe that video technology has proven itself very useful in some contexts (including scientific meetings) and it allows researchers to speak with a wide cross section pwMS. The speed with which concerns about vaccinations has been addressed is another example of increased pace.
On a more positive note. I feel more resilient, self reliant and self aware due to covid and the lockdowns.
I know I have to nudge people and be persistent to make things happen, with regards to my healthcare.
Baby sitting the healthcare system. For me it has come to this.