Category: Archive

As you see we are trying to post less often on the blog so that you have more time to read and discuss the posts. The following blog post is a bit of a cheat as I have reviewed three papers. However, they are all related to coffee and are relevant to pwMS and their families.

Tony Blair is famously quoted as saying ‘Education, education, education, …’ and putting education at the centre of New Labour’s manifesto in 1997. However, is it the type or the quality of education that makes the difference and changes the world?

We are trying to change the world of MS treatment.



I have learned that information in itself may pique attention, but it rarely changes behaviour.

I have been very impressed by the feedback we have had from our initial two MS Academies. Healthcare delegates participate in a 3-day course. They then go to a research or service development project or even an audit in relation to MS. The act of going away and doing something active makes delegates think about their MS practice and consider the service(s) they provide for their patients with MS. In other words, the doing induces a change in behaviour and complements the educational element of the course in changing behaviour.

Doing makes a difference!

If you are interested in joining the MS Academy and attending an MS Masterclass please register your interest via the MS Academy website. Please note these courses are open to non-UK clinicians and having HCPs from other countries helps NHS employees. After all aren’t we still European, or even better citizens of the world?

A recent study published in the British Medical Journal (BMJ) proposes a simple three talk model for shared-decision making in the clinic. 


Have you been involved in a shared-decision making process, or have you simply been told what is best for you? 


Please have your say.

ProfG    
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The latest PML risk figures from Biogen. If you are on natalizumab and are JCV seropositive this post is for you.

ProfG    
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Landmark decision by the CHMP; ocrelizumab gets licensed for both relapsing and primary progressive MS.

For all those pwPPMS who have been waiting for a treatment for their disease. Your wait is almost over. After many anxious months, and against the opinion of many naysayers, the CHMP (Committe for Medicinal Products for Human Use) have greenlighted ocrelizumab for the treatment of PPMS in Europe. It is not quite the liberal license of other countries, but it is a start. 


“Ocrevus is indicated for the treatment of adult patients with relapsing forms of multiple sclerosis
(RMS) with active disease defined by clinical or imaging features (see section 5.1). 


Ocrevus is indicated for the treatment of adult patients with early primary progressive multiple
sclerosis (PPMS) in terms of disease duration and level of disability, and with imaging features
characteristic of inflammatory activity (see section 5.1).”

The question I have for Roche is will they take up our #ThinkHand challenge and do a trial in people with more advanced MS, i.e. those who are in wheelchairs? 

I personally would like to thank all the pwMS who participated in both the relapsing (Opera 1 & 2) and primary progressive (Oratorio) trials; without you we wouldn’t have gotten here. Progressive MS is now a tractable problem, what we now need is combination therapy trials. 

We keep getting at least one new approved MS disease-modifying drug per year. You might think this would help tailor therapy to individual needs. Unfortunately, this doesn’t really seem to be the case. Patients are switching therapies now more than ever. MS experts can’t seem to agree which drug is the best even for the same types of patients. Treatment practices vary widely, not only across countries but all the way down to regions, clinics and even individual doctors. Perhaps the most important cause of these wide variations in care is the lack of long-term real-world data. 

Fredrik Piehl, Annette Langer-Gould, Jessica Smith and Anna Fogdell Hahn on behalf of the COMBAT-MS investigators and steering committee

At ECTRIMS I gave a short TED-type talk on why I think we need to measure cognition in people with MS in routine clinical practice. Do you agree?



Podcast: 

The following are my slides and the accompanying script. What are your thoughts on the issue?

After a second person with early RRMS died from fulminant liver failure whilst being treated with daclizumab the EMA are restricting daclizumab’s use.