survey – Prof G's MS Blog Archive

Probiotics: yes, no or maybe?

Barts-MS rose-tinted-odometer: ★★ (Black Friday, Friday the 13th #000000)

The meta-analysis below of probiotics suggests they may help people with MS (pwMS). However, when you drill down into the details you will note that there were only four studies included in the meta-analysis with 213 actively treated subjects compared to 107 controls. Far too small to be confident of an effect. The problem with probiotics is not only their definition but trying to work out what they actually do in terms of MS pathology. The rationale for prescribing probiotics to treat MS is based on the potential for gut bacteria to be anti-inflammatory and to stimulate regulatory cells. This hypothesis is based largely on animal studies and I am yet to be convinced it has any relevance to multiple sclerosis. This is why I don’t recommend probiotics to my patients. If your financial resources are limited I would question spending them on unproven therapies such as probiotics.

I would be interested to know how many of you are taking probiotics, who prescribed them and have you noticed any effect?

Mirashrafi et al. Effect of Probiotics Supplementation on Disease Progression, Depression, General Health and Anthropometric Measurements in Relapsing-Remitting Multiple Sclerosis Patients: A Systematic Review and Meta-analysis of Clinical Trials. Meta-Analysis Int J Clin Pract. 2021 Aug 11;e14724.

Methods: The English literature search was performed using PubMed, Scopus, Web of Science, and the Central Cochrane Library through January 2021. Random effect models were used to synthesize quantitative data by STATA14 .

Results: From a total of 152 identified entries, four trials were included in quantitative synthesis (n=213; 106 as intervention, 107 as control). An additional six studies with the same structure and different markers were also systematically reviewed. The pooled effect size showed that Expanded Disability Status Scale (EDSS) (WMD=-0.43; 95% CI=-0.65, -0.20; P<0.001), Beck Depression Inventory-Ⅱ (BDI-Ⅱ) (WMD=-3.22; 95% CI=-4.38, -2.06; P<0.001) and General Health Questionnaire (GHQ) (WMD=-4.37; 95% CI=-6.43, -2.31; P<0.001) were improved following probiotics supplementation. However, body weight and body mass index did not statistically change.

Conclusion: Our findings revealed that probiotics supplementation can improve disease progression, suppress depression, and general health in MS patients; although, further investigations may be needed.

Conflicts of Interest

MS-Selfie Newsletter / MS-Selfie Microsite

Preventive Neurology

Twitter / LinkedIn / Medium

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. Results of these surveys may be presented on this blog and/or submitted for publication.

DMT wishlist

Barts-MS rose-tinted-odometer: ★★★★★ (seeing green; the green shoots of spring)

I was asked yesterday if I could have a wish and change three things in relation to the prescribing of MS DMTs in the NHS, which ones would I prioritise? Can you help? The idea is to make changes based on how we would want to manage MS proactively as possible and to give pwMS choice. The idea of this exercise is to get an idea of what is most important to the MS community given our current restrictions. Please note you can add your own priority at the bottom of the survey if you don’t feel satisfied with the limited selection provided.

The poll will take 3 seconds to complete and you are welcome to complete it if you live outside of the UK and/or are not someone with MS.

Thanks

Conflicts of Interest

Preventive Neurology

Twitter

Medium

The C-word

Barts-MS rose-tinted-odometer: zero-★s (seeing red)

After my blog post on potentially curing MS, I have been criticised by several people in the MS community for using the C-word. Do you agree? Have I raised false hopes?

I am of the opinion that unless we define what an MS cure looks like and then look for it we will never find it; i.e. the holy grail will always elude us. Another factor is that if we are really curing some people with MS with IRTs (immune reconstitution therapies) shouldn’t the MS community know about it? Wouldn’t that shift the risk:benefit ratio in favour of the benefits? Just maybe more people will choose to be treated with AHSCT, alemtuzumab or cladribine if there was a small chance of a cure. One commentator has suggested I use the term long-term remission rather than cure. The problem with long-term remission is that it doesn’t quite have the same emotional impact as a cure.

One of my patients with both MS and breast cancer was bowled over by her breast cancer consultant who said to her, “we have an 80% chance of curing you of your breast cancer”. Saying “we have an 80% chance of putting your breast cancer into long-term remission”, just doesn’t quite cut the mustard.

If you have the time can you please respond to this three-question survey, which will take you literally 15 seconds to complete? Thank you.

Conflicts of Interest

Preventive Neurology

Twitter

Medium

Vaccine Hesitancy Survey

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.

CoI: multiple

#MSCOVID19: have a say about your COVID-19 MS service

As a result of COVID-19 the MS community has had to reconfigure their services. We want some feedback and advice about what we are doing right and what we are doing wrong.

Please watch this video for more information.

If you have time can you please complete this survey to help us evolve what we are doing. Not all the virtual services we are providing are going to stop post-COVID-19, which is why we need to improve our offering. We are also looking for volunteers to help with designing the service and helping with testing some of its features.

CoI: multiple

Induction-maintenance

Barts-MS rose-tinted-odometer ★★★

By definition an immune reconstitution therapy (IRT) for MS is given as a short course, i.e. as a one-off treatment in the case of HSCT or intermittently as in the case of alemtuzumab or cladribine. IRTs are not given continuously and additional courses of the therapy are only given if there is a recurrence of inflammatory activity. IRTs have the ability to induce long-term remission and in some cases potentially a cure.

Immune reconstitution simply refers to the restoring of a competent immune system after a cycle, or cycles, of depletion. Immune competence in the context of an IRT refers to the ability of the immune system to respond to infection, in particular, opportunistic infections, mount an antibody response to vaccines and to perform normal systemic tumour surveillance.

Immune reconstitution has been best shown in the context of hematopoietic stem cell transplantation (HSCT). In the case of an IRT, for example, alemtuzumab or cladribine, which are given as short courses breakthrough disease activity can be used as an indicator to retreat rather than to necessarily switch therapy. Therefore, there a rebaselining MRI should be delayed until after the final initial course of therapy, e.g. 2 years, or close enough to the time when a third, or subsequent course, can be administered

A major concern in relation to the wide adoption of IRTs is the uncertainty about the duration of their effectiveness and the concern that disease activity may reoccur at a level below the clinical and MRI monitoring thresholds used in routine clinical practice. If disease activity does reoccur will it cause irreversible end-organ damage? In addition, some IRTs, in particular, alemtuzumab and HSCT, are associated with a high rate of secondary autoimmunity and rarely with early and severe rebound disease activity.

One strategy we are exploring is to use an IRT as true induction therapy and then maintain the treatment effect with safer maintenance therapies. In the case of alemtuzumab and HSCT, certain maintenance therapies could potentially prevent secondary autoimmunity and early rebound disease activity.

We are in the process of preparing a grant application to explore the safety of an induction-maintenance treatment. Would you be interested in helping by completing the following survey?

CoI: multiple

What’s in a name?

You will have noticed that a lot of discussion on this blog has recently been devoted to the topic of secondary progression or smouldering MS or whatever else you want to call it. At the moment there is no standard terminology for describing the scenario of someone with MS who is NEDA-2 (no relapses and no activity on MRI) who is getting worse. The getting worse could be overt, i.e. worsening EDSS, or a more subtle deterioration, which can only be detected using more sensitive outcome measures, or asymptomatic.

Can you let us know which term you prefer?

Non-relapsing SPMS
Inactive SPMS
Hidden SPMS
Hidden progression
Silent progression
Progression independent of relapses (PIRA)
Smouldering MS
Worsening MS
Festering MS

I personally don’t like the use of secondary progression in the term. This excludes MSers with a primary progressive course who have the same pathology and entrenches the dogma that relapse-onset MS and PPMS are different and separate diseases.

Hidden is another term that I don’t like; what is hidden for some MSers may not be hidden for other MSers. For example, cognitive impairment only becomes a problem when you stress your brain. Some MSers may be in a life stage when cognitive stressors are rare and others may stress or test their cognitive abilities on a daily basis.

The term PIRA seems to have the lead at the moment and is being used more and more in abstracts and meetings. Worsening MS is a catch-all phrase that by definition can occur in the presence or absence of relapses and hence according to the Lublin classification you can have active-worsening and inactive-worsening MS. Please note that according to Lublin the worsening has to be overt, i.e. captured using an objective outcome measure.

I like smouldering MS because it creates a visual analogy of what is happening to the brain and spinal cord of MSers. In other words, the flames or relapses and focal MRI activity have been quelled, but the embers continue to burn. It also implies that the embers can fire-up and reignite the flames at any stage. I have a potential conflict in that the term ‘smouldering MS’ may have been used first on this blog and hence we have a vested interest in this term being selected.

What do you think?

CoI: multiple