It's Been A Little While ...

I'm conscious that I haven't updated here for a little while. Been away, been busy and (worst of all), my internet connection at home is currently dead. Anyway a few interesting things to report in the interim. The first was a story in a free newspaper in the UK (Metro) which I wouldn't normally pay too much attention to. However I looked into it and the sources were reputable so here we go. The story is here but I don't know if it will work outside the UK - apologies if not - so I will quickly paraphrase.

Fantastic green moss!

Essentially there has been some recent research looking into ways to "reset" the immune system in people with auto-immune diseases like Multiple Sclerosis. People think CLIPPERS may also be an auto-immune disease (I am not a doctor). The scientists designed artificial "nano-particles" to attach to Myelin  (which is attacked by MS) and essentially distract the immune system. The chief scientist was quoted as saying "The aim was to provide a targeted treatment unlike immunosuppression which weakens the whole immune system." The research paper details are here. Now this has only been tried in mice under very controlled conditions so far, so it is early days. My limited understanding is also that you have to have a very good understanding of the disease mechanism before you can design the appropriate particles - this is something we don't have currently in CLIPPERS. Still, with so few of us, it is encouraging that these kind of generic technologies might one day provide some hope for treatment of a whole range of diseases. 

Interestingly the BBC had another angle about MS recently, which also concerned "resetting" the immune system, this time using an existing drug which has already been licenced for use in other diseases. This kind of low-cost translation of treatments across diseases is also something which can provide at least a modicum of hope to us reluctant members of the CLIPPERS club.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Out and About

I've been away at a Parkinson's disease conference for a few days. I know (or at least knew) next to nothing about Parkinson's but did some image analysis on one of the featured papers. It was a really interesting meeting even if it was impenetrable to me in places. Parkinson's has been around for a long time - it was characterised by James Parkinson in 1817 - and affects a lot of people, but there is no cure as such, even now, and a limited range of treatments. Listening to the various talks at the meeting it seemed to me that a lot is known in detail about a lot of different aspects of the disease but the full picture is still not understood. Imagine trying to figure out the plot of Lord of the Rings by randomly sampling a few pages at a time from the three books. After you've read 50 sets of pages or so (and if you can put them in the right order) you will have some idea what is going on in certain parts of the story but you will still have a very restricted outlook on the whole; it will take many more pages to reflect the detail and give a true understanding. 

Now CLIPPERS is a relatively new condition (or at least newly identified) but it seems possible (I am not a doctor) that CLIPPERS will fit somewhere into the existing framework of understanding of auto-immune diseases. We already have treatments for CLIPPERS which can alleviate and suppress the symptoms at least some of the time and/or if used early enough. However, as far as I know, no-one has yet figured out the mechanisms, causes or triggers of the disease that will be necessary for a cure. I think the good news is that we are starting from a fairly advanced level of understanding about  related conditions so maybe CLIPPERS will be a missing part of a bigger puzzle ...

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Aside: Contagion

(This is another of those occasional Asides which are only a little about CLIPPERS.)
 

I went for my flu jab last week; I've only started having them since being treated for CLIPPERS so this is only the second. In the UK the good old NHS ensures that as a member of an at-risk population I automatically get an invite to get one for free at my local clinic. So I've had the jab and it was all very straight-forward and no trouble at all. Now I'm wondering what I've been exposed to along the way.

Cover mouth, cough, then wash hands.

I made the appointment and showed up at the clinic. Which was full. Of people coughing - half of them seemed to have flu already even though it was a special flu-jab day. So I checked in and sat down away from the worst of the splutterers. The check-in at my practice is computerised - there is a touch screen and when you arrive you click the relevant brightly-coloured button to select "male" or "female" and your date of birth, after which it identifies you and asks if it has found the right appointment. So far, so good. Perhaps because I got used to it in hospital, I automatically used the handwash next to the screen and sat down for my appointment. I didn't have to wait long, probably 5 minutes or so. However in that time a steady stream of people checked in at the same screen and not one of them used the handwash before or after coughing and touching the screen (or anything else). Given that everyone in the room was in an "at risk of infection" category (about 90% were pensioners and the rest pregnant women) they didn't seem to be taking many precautions. If any one of them had been exposed to Norovirus for instance then this packed room seemed an ideal place to transmit it. Anyway, pretty soon I made it into the injection room and once I'd convinced them I really was supposed to be there (not being elderly or pregnant) the jab itself was barely noticeable.

Next year I'm taking more precautions.

I'm not about to turn into Michael Jackson and wear gloves and a facemask everywhere. Still having had a few bugs in my time and not wanting any more while my immune system is compromised I think I'm entitled to be a bit paranoid.

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

CLIPPERS And Other Nasties

Station Cat - seen on the way to work occasionally

News about CLIPPERS is a bit thin on the ground at the moment. Hopefully, like the retail industry, the journals are saving everything up for the Christmas rush. In the mean-time, I was flicking through a paper called "Autoinflammatory grey matter lesions in humans: cortical encephalitis, clinical disorders, experimental models" (unfortunately not open access but you can read the abstract). Hidden away was a brief mention of CLIPPERS, essentially commenting that it is a new example of a disease which has a " ... unspecific inflammatory reaction which may also affect grey matter". This much we know, but it is interesting that there are now attempts in the literature to compare and contrast CLIPPERS to other diseases - much of this paper was about Multiple Sclerosis which was a candidate diagnosis in my case, at least for a week or so. In fact this paper approached things from a mechanistic rather than a disease perspective - it considered a particular way in which damage to the brain could occur and then discussed the various different disorders which could cause it.

The other thing which I found both interesting and worrying last year, was the sheer number of different things which can afflict us. When I was in hospital the doctors would tell me they were going to test for all sorts of things which I had never even heard of. Mostly I didn't even know whether to worry about the diagnosis if I got one. If I'd known about all these different maladies before I was investigated I'm sure I would have got really stressed out trying to work out which it could be. As it turned out, with CLIPPERS I didn't know whether to worry about the diagnosis and I'm not sure the doctors did either!

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.