Category: Archive

Sometimes you want to say something unrelated to the thread or ask a clinical question or some other MS-related question that has not been answered in past. This is the place for you.

Decoding our blog posts using #hastags and labels. #NewsSpeak

As you are probably aware blogging platforms, such as Blogger, are not ideal for curating content. They simply put posts up one after the other in a long series and older posts get lost with time. The blog search engine helps find old posts and works well with the labels. 

Google Search on the web also finds  old posts. The latter works well if you include ‘MS Blog’,  ‘Barts-MS’  or ‘Barts Blog’ as part of the search terms. 

A smart way of following the blog is by email, i.e. you need to register using the web version of blogger. The number of people following our blog by email numbers in the thousands. This works well, but if we are doing a survey you still have to visit the site to complete it; we can’t embed surveys into emails from the blog. 

We are aware that some of the posts are very technical and pwMS don’t understand them. To get around this issue I hashtag all my posts with labels to allow you to filter what you read. The following is a list of the most commonly used #hashtags. 

#ClinicSpeak – for pwMS with information that will help with the clinical management of your MS

#ResearchSpeak – a post on the interpretation of an article related to MS research

#NeuroSpeak – a post for HCPs, in particular neurologists, about the management of MS

#NurseSpeak – a post for MS clinical nurse specialists about the management of MS

#PharmaSpeak – a post for pharmaceutical representatives

#NewsSpeak – a post on breaking news relevant to MS

#PoliticalSpeak – a post on topic linked to health policy

#TeachSpeak – these posts are related to specific posts around teaching about a specific topic. 

#SurveySpeak – a post that includes an embedded survey.

#ResultsSpeak – a post that presents the results of a survey done on the blog


#GuestPost – a post from someone who is not part of Barts-MS. These are usually invited posts, but we will accept requests (no advertising please).

#ThinkSpeak – these are posts that are me thinking aloud on a host of topics that may or may not be relevant to MS. I have now moved these posts off this blog onto Medium, a new social media platform. 

Then there are a lot of labels I use that tell you a post is relevant to a specific campaign or topic. 

#BrainHealth – about our ‘Brain Health: Time is Brain’ is campaign

#ThinkHand – about our campaign to increase awareness of the importance of hand function in MS

#ChariotMS – about our campaign to do a trial in pwMS who are already using wheelchairs

#CharcotProject – posts about our research initiative into the viral cause of MS

#CrowdSpeak – this usually refers to fundraising campaigns

#DigestingScience – our education initiative targeting children of people with MS

#MSResearchDay – posts advertising or discussing our Research days. 

#ECTRIMS2017 – posts about the upcoming ECTRIMS congress in Paris

#ABN2017 – posts on the 2017 Association of British Neurologists meeting

#AAN2018 – posts relevant to next year’s AAN meeting

From time to time we will use bespoke #hashtags that will be self-explanatory. 

Some other tips:

Apart from using email and physical visits to the blog there are simple web tools you can use and programme to deliver notifications via email or your smartphone about posts with a specific #hashtag. I personally use IFTTT , which stands for “If this then that”. IFTTT allows you to create recipes, or short programmes, that are triggered whenever we do a post with a specific label you want to follow. Zapier is very similar to IFTTT and offers more tools, but you have to subscribe to its services. 

Theoretical ClinicSpeak scenario: A patient with MS asked me to write a letter to her plastic surgeon about her planned breast augmentation surgery. Her surgeon was reluctant to do the surgery on the off chance that it would make her MS worse. I dutifully wrote the letter stating that to the best of my knowledge I was not aware of any reason why she shouldn’t undergo the surgery because of her MS. 

Amato et al. Association of MRI metrics and cognitive impairment in radiologically isolated syndromes. Neurology. 2012 Jan 31;78(5):309-14.

OBJECTIVE: To evaluate cognitive changes in a cohort of radiologically isolated syndromes (RIS) suggestive of MS and to assess their relationship with quantitative MRI measures such as white matter (WM), lesion loads, and cerebral atrophy.

METHODS: We assessed the cognitive performance in a group of 29 subjects with RIS recruited from 5 Italian MS centers and in a group of 26 patients with RRMS. A subgroup of 19 subjects with RIS, 26 patients with RRMS, and 21 healthy control (HC) subjects also underwent quantitative MR assessments, which included WM T1 and T2 lesion volumes and global and cortical brain volumes.

Poor sleep is the Big Elephant in the room; we need to do something about it. #ClinicSpeak #BrainHealth


Summary: We as a society are chronically sleep deprived. Sleep deprivation is associated with a large number of medical problems. Improving your sleep hygiene should reduce these problems and improve your quality of life. 


One of my patients sent me the link to the Guardian article below. I suggest you read and digest its contents; it is medical writing at its best. It summarises the science about poor sleep hygiene and discusses a list of common maladies that are associated with poor sleep. The following is a short list:


1. Obesity, metabolic syndrome, hyperglycaemia and hypertension
2. Stress, anxiety and depression
3. Reduced concentration, poor memory and dementia (Alzheimer’s disease)
4. Cardiovascular disease: myocardial infarction
5. Increased risk of common infections
6. Reduced quality of life
7. Increased risk of making errors of judgement 
8. Reduced reaction times


The article highlights that at a population level we are chronically sleep deprived. Some of the factors driving this epidemic are cultural, i.e. 24/7 entertainment, stimulants (caffeine) and macho culture of burning the candle at both ends. It is quite clear that sleep deprivation is reducing our productivity and making us sick. 


I sent the article to my wife to read and she said that she hopes I take note. I am a veteran insomniac and have very poor, in fact shocking, sleep hygiene. I probably have 4-5 hours of sleep a day during the week and slightly more on weekends. In short, this is not good for me. I always feel tired and to get through a typical work day I have to consume 8-10  Nespresso capsules; any more than this and I get a caffeine tremor and anxiety. I am typically so wired by the end of the day that when I get home it takes me several hours to relax. Day 1 of restricting myself to two cups of coffee per day. 


I find exercise really helps reset things. When I was training for marathons I would be forced to go to bed early and would sleep like a baby and wake refreshed. The problem is that my exercise patterns have also become erratic; I have become a weekend warrior. 


Why I am telling you all this? Sleep hygiene is one of the issues that we address as part of our Brain Health initiative and is central to the holistic management of MS. I believe that I should practice what I preach; i.e. if I am to tell my patients to improve their sleep hygiene I need to improve my own. I am saying this to you, as I am making multiple typos having just completed an overnight trans-Atlantic flight during which I only got 3 hours of restless sleep. Time to have a sleep? 


Poor sleep is a major problem for pwMS. When I did a survey on sleep problems in pwMS on the blog a few years ago it showed that the majority of pwMS have sleep problems. The reasons for poor sleep were numerous with many people having more that one problem. I spend a lot of my clinic time addressing poor sleep in pwMS. I, therefore, urge you to assess your own sleep, if it is disturbed to identify why you are sleeping poorly and to then try and address the problems. 


When we get our group clinics off the ground one of them will be dedicated to sleep hygiene. Sorting out poor sleep usually means we have to sort out all your other symptomatic problems. 

Rachel Cooke. The shorter your sleep, the shorter your life: the new sleep science. The Guardian Sunday 24 September 2017 08.00 BST.

Summary: A perspective from someone with MS on Brexit and its potential impact on his/her life. The author is a professional journalist, who frequently visits our blog and volunteered this piece; it was not commissioned. For obvious reasons, he/she wants to remain anonymous and has penned this under his/her blog pseudonym iaino.

In the far-off Pacific, in the islands of the Trobriands, there is a language called Kilivila. And that language possesses a word that struggles to be translated into English – or any other language, for that matter.

Mokita.

Mokita means a painful fact that everyone is aware of, but which – out of compassion – no one dares mention. The ability of a group to manage mokita is said to be deeply admired. Multiple sclerosis might be a case in point. People may know you have it, and the flip and the flop of your feet on pavement will testify to it, but – like Voldemort in Harry Potter – it is a thing that dare not be named.

There are, of course, words in English that, like Mokita, do not translate easily. Brexit is one of them.

Like Mokita, Brexit slips through our fingers when we truly try to interpret its meaning. Of course, on a basic level, it refers to the prospective withdrawal of the United Kingdom from the European Union. But on a deeper level, it means so much more. To some, it is a symbol of national pride, hope and of better days ahead. To others, it is a rejection of hard-fought liberal ideals, a slap in the face to multiculturalism and a green card for racism and bigotry.

But to everyone Brexit means one thing: uncertainty. Even Boris Johnson, for all his bluster, cannot know for sure what will come of it. And, to people with Multiple Sclerosis – that most uncertain of diseases – it must mean uncertainty layered upon uncertainty.

Why should this be? Well, on a very simple level, Brexit poses great uncertainties to our future health.

First, Brexit raises the issue of who will treat us after the barriers come down? Screeds have been written about how the NHS is staffed by people from across the European Union. Men and women who have travelled here to the UK, to hoist us onto MRI machines, slide needles into our trembling veins, inspect our Babinski reflexes are many. One of my favourite MS nurses is French-Algerian. My Cladribine research hero is a German. My last brain scan was undertaken by a Pole. Not only has Brexit been a slap in the face to them (ask them – yes, they took it personally), but it also raises the question: if they decide to leave our little island (and who would blame them?), who will take their place? Who, indeed?

Second, there is the issue of the pound. A weak pound does not just mean that sangrias at the pool in Ibiza have become eye-wateringly costly. A weak pound also hikes up our drug prices. The policy director of the Health Care Financial Management Association, the professional association for NHS financial staff, has told the BBC he expects there to be an impact on the NHS caused by the increasing cost of imports. “Efficiencies one way or another” are expected. And you know that when someone starts talking about efficiencies, it doesn’t bode well for a disease renowned for making people notably less-than-efficient. In the US, Ocrelizumab (Ocrevus), the first disease-modifying treatment that has been seen to have an impact on primary progressive multiple sclerosis, is tagged at a costly $65,000 per year. Will efficiencies mean that this drug will be restricted in the UK to the very few? After all, only this week tens of thousands of Parkinson’s disease patients with a mixture of dementia and psychosis were denied an effective drug due to its cost.

Third, Brexit brings uncertainty to our economy as a whole. Britain’s credit rating has just been downgraded by Moody’s. Nobel laureate economist Paul Krugman says there is ‘zero chance’ leaving the EU will make Britons better off. What impact Brexit might have on employment prospects is – yes – very uncertain. And if you are the person in the office who keeps on having to take time off for duvet days, or neurologist appointments, and all the rest, well… we won’t have the European Court of Human Rights to defend us if we are the first to be sacked.

Fourth, it brings uncertainty to scientific research, and this isn’t just because mice might go up in price. As the prestigious Royal Institution states: “the ramifications of Brexit are still unknown, but it is certain to affect jobs, funding and collaborations for decades to come.” Will funding streams dry up? Will cross-border collaborations wither on the vine? What possible cure might be lost in the maelstrom?

Finally, Brexit has fostered the shadow child of insecurity: namely, intolerance. It cannot be denied that Brexit was partly born from a fear of ‘the other’. When Nigel Farage stood in front of a poster of male migrants, supported by the tag-line ‘Breaking Point’, he used the age-old trope of ‘the other’ as the threat. The barbarians were at the gates. It’s the daily fodder for the pro-Brexit papers. Refugees are turned into migrants and migrants has turned into a dirty word. To me the issue is this: when we get into the politics of explicit bias – where ‘the other’ becomes a potent symbol for people to be distrusted and reviled, then where does that lead? Because we, people with disabilities, are ‘the other’. We are the ones that need the support of the state at exactly the same time when the state wants to demonise those who might seek support. It begins with migrants, it shifts to people of colour, then the impoverished, then the mentally ill… there is always ‘the other’. And when intolerance becomes a politically acceptable creed, those who should be most concerned are those who are least able.

So, perhaps we should strive not to apply the Kilivilian word of mokita to Brexit. Perhaps those with MS, the charities that support those with MS, the partners of people with MS, perhaps we should really begin to debate more fiercely what Brexit might mean for us. For our access to NHS staff, our access to drugs, our access to employment rights, our access to the benefits of research: all of this is now uncertain.

We are in the process of ‘professionalising‘ the Barts-MS blog, by reducing the number of posts and improving the quality and relevance of each post for pwMS. As part of this transition, I will be moving all of my #ThinkSpeak posts, which are not directly relevant to MS onto Medium, a relatively new and evolving social media platform. Although the #ThinkSpeak post ‘#SocialMedicine the great disruptor‘ that I posted on Medium is underpinned by many ideas that I have developed on this blog I don’t think its content is appropriate for this site.

Teriflunomide is the drug of choice for treating MS in patients recovering from PML. #NeuroSpeak #CharcotProject

Summary: This post summarises the scientific principles for treating multiple sclerosis in patients who have PML as a complication of natalizumab treatment. I make the case for using DMTs that are not immunosuppressive and highlight the antiviral effects of Teriflunomide that make it the DMT of choice. 

At the grand round at Imperial College on Friday, a case of natalizumab-associated PML was presented. The patient had developed IRIS and was deteriorating. The question was posed about MS rebound contributing to some of the later deterioration in functioning and how to treat MS in this situation. 

It is clear that you cannot use an MS DMT that causes immunosuppression, particularly one that targets T-cells, in this situation. Patients with PML need their CD8+ cytotoxic T-cell to recover from PML. In my opinion, this only leaves 4 drugs that have a suitable profile:

(1) Interferon-beta: IFNbeta is not immunosuppressive and has many activities that are anti-viral. However, a lot of people who are on natalizumab may have failed IFNbeta in the past. IFNbeta has also been shown not to be that effective in preventing MS rebound post-natalizumab. 

(2) Glatiramer acetate: GA is not immunosuppressive, is only moderately effective in treating MS, is not effective in preventing MS rebound post-natalizumab and has a delayed onset of action. Therefore, it would not be the ideal agent to prevent MS rebound post-alemtuzumab in a patient with PML.

(3) Teriflunomide: Teri is not immunosuppressive as defined by the regulators, it has a complex mode of action that includes general anti-viral activity. Interestingly, leflunomide, a prodrug that is converted into teriflunomide, has been shown to have antiviral effects against BK virus (see below), that is very closely related to JCV, the cause of PML. In addition, there is some emerging evidence that Teri may cross the blood-brain barrier and hence may be able to inhibit JCV with the CNS. At the last AAN there was a poster of a switch study showing that Teri, post-natalizumab, was able to hold back rebound MS disease activity in the majority of patients and overall these patients did well.

(4) Daclizumab: Dac is not immunosuppressive, as defined by regulators, and only drops CD8 cell numbers by ~10%. Therefore, antiviral responses, for example against JCV should be intact. Dac also expands the NK, or natural killer, cell population that have anti-viral effects. We are in the process of doing a switch study to assess the effectiveness of Dac post-natalizumab to see how effective it is in preventing post-natalizumab rebound. Daclizumab also has a rapid-onset of action making which makes it an ideal agent post-natalizumab. However, as Dac reduces IL2 signalling in activated T-cells it may blunt effector T cell responses, i.e. reduce their reactivity, which makes me concerned about using it in patients with active JCV infection and PML. 

My recommendation, therefore, to the team looking after this patient particular patient was to use high dose Leflunomide (40mg per day) until JCV was not detectable in her CSF and then to switch her to Teriflunomide 14mg per day. The choice of Leflunomide dose is based on that used to treat BK-virus associated nephropathy. In my opinion, the team looking after this patient have little to lose; her JCV viral load in the spinal fluid was dropping so the IRIS (immune reconstitution syndrome) was at least taking care of the JC virus. However, she needs something to take care of MS without impacting on her immune system and at the same time assisting with the treatment of her PML.

We are already beyond ECTRIMS and planning for the ECF 2017 meeting in Baveno. #ECF2017 #NeuroSpeak


I am trying to communicate the new treatment concept of using a new class of treatments called the immune reconstitution therapies, or IRTs. If you are an HCP and are attending the European Charcot Foundation meeting in Baveno, Italy (30th November – 2nd December 2017), you may want to consider extending your stay to attend the following satellite symposium. I will be speaking on the topic of IRTs. To attend you need to pre-register online via this URL.