MS Research Roundup June 2012 Part 2

This is the second part of the current research roundup. Part 1 is here. In this part, I'll be looking at MS treatments.

The symptoms of MS are caused by damage to the fatty myelin sheath round nerve cells. American researchers found that the immune systems of people with MS were targeting 4 particular lipids (fats). In autopsy, these lipids were depleted in areas of MS damage.

Working with mice with an MS-like illness, they then injected the lipids over several weeks. Disease severity was limited and even reversed. Some tests now show that the mice can take the lipids orally and still improve.

This research is at very early stages, but it holds huge promise for a treatment that can actually repair our damaged myelin.

Omega-3 fatty acids are thought to be helpful for many conditions, but not much work has been done on how they work. American scientists fed three types of fatty acid to mouse macrophages, which they stored as phospholipids. The scientists then stimulated the cells to produce inflammatory responses.They found that Omega-3 inhibited an enzyme called cyclooxygenase (COX), which produces the prostaglandin hormones that spark inflammation.

Inflammation is part of the process of damage to nerve cells that leads to MS symptoms. This research is a big clue as to what could be happening inside the cells, and how Omega-3 oils could possibly help.

Now an exciting stem cell study. An American research group isolated hepatocyte growth factor from mouse mesenchymal stem cells. When they injected this into animals with an MS-like condition, inflammation reduced, neural cells grew, and the myelin sheath regrew over lesions caused by the disease.

Previous work by these researchers has led to a clinical trial where MS patients are being injected with their own stem cells. Now it looks like they may have found the important element for recovery.Watch this space!

Canadian researchers gave injections of either the MS drug interferon beta-1a or a placebo to people who had had signs of possible MS. After 3 years, those who had been on interferon beta-1a were less likely to have progressed to clinically definite MS. This confirms the importance of starting treatment as early as possible.

An oral drug, ONO-4641, is being trialled in the USA.  The investigators have found that after 6 months, those on the drug had a reduced number of brain lesions. The medication does have possible side effects, including short-term heart problems, raised liver enzymes, and lowered levels of lymphocytes, an immune system component. The drug does sound promising though, for those unaffected.

Most clinical trials for MS drugs are with people who have relapsing-remitting MS: perhaps natural, since that's the largest group of people with MS. What follows, though, is that in due course the treatments are only approved for use in RRMS, because that's the only group where there's evidence.

So it's good to see a (small) study, of a drug called MIS416, in secondary progressive MS. Although a far bigger study is needed, most of the patients in this trial saw some relief of their symptoms after only 12 weeks. I look forward to seeing further results on this drug.

Finally, some good news for those of us with MS: it seems we may be less likely than average to have heart disease. An American researcher analysed the reasons people with MS had been in hospital, and compared them with people without MS discharged from hospital. The people with MS were less likely to have had heart attacks.

To be honest, I'm not entirely convinced by this. The people with MS were (on average) younger than the others in the analysis, so would be less likely to have cardiovascular problems. And it doesn't seem to take account of the additional risk for people with MS of being hospitalised for infections.

But hey, I'll take all the good news I can!

That's it for this research roundup. See you next time?

MS Research Roundup June 2012 Part 1

Lots of interesting research to report again this time. It would be a very (very) long post if I did everything together, so I'm going to split it into two. This post will be about risk factors for MS and possible causes, and the second post (to follow shortly) will focus on treatments.

We know that more women than men have MS, and the proportion is increasing. Greek researchers compared the proportions in people living in urban and rural areas in Crete. They found that in rural areas there was less risk of MS generally, and the women:men proportion hadn't risen as it had in the towns.

This is an interesting finding. The researchers found that the urban women were more likely to smoke, drink pasteurised milk, use contraceptives, and various other factors. But so many things could possibly be involved - environmental pollution is one that springs to mind. More research needed!

Research is showing that Vitamin D is linked with a huge number of conditions, including MS. Now it seems it could also be associated with some cases where MS runs in families. British and Canadian researchers have identified a rare gene variant in these families, called CYP27B. People who inherit two copies of this gene develop a genetic form of rickets, a condition caused by vitamin D deficiency. One copy leads to lower than normal levels of vitamin D.

Out of over 3000 unaffected parents of people with MS, 35 carried the gene. In all 35 cases, the person with MS had inherited the gene. The odds against this happening by chance were enormous.

Not only does this finding go some way to explaining how MS can run in families, it also adds to the growing weight of evidence that vitamin D levels and MS are very closely linked.

We also know already that there are links between previous exposure to the Epstein-Barr virus (EBV), which causes glandular fever (mononucleosis), and the risk of developing MS. Spanish researchers discovered that naturally  lower levels of vitamin D in winter were linked with lower levels of an immune system component called TLR7. This controls the immune system response to viruses.

The researchers drew no conclusions about the impact of all this on other conditions: but could this be one piece in the puzzle of how the different MS risk factors are linked?

Several projects relating to the CCSVI theory have reported recently. First, two proof of concept studies from the USA, which examined people with MS, people with other conditions, and healthy controls using the Zamboni protocol, using ultrasound and MRV. They found that only a small proportion of people with MS had the venous constrictions said to be characteristic of CCSVI: the proportion for both people with other conditions and healthy people was similar. These studies showed no evidence that narrowed veins are linked with MS.


The European Society of neurosonology and cerebral hemodynamics examined the five criteria for diagnosing CCSVI in the Zamboni ultrasound protocol, along with the studies from which they were derived and the main studies looking at cerebrospinal drainage. Their view is that the criteria are questionable: one is based on data collected in other contexts, two have never been validated, one is technically incorrect, and two are subject to so many external influnces that it's difficult to state whether any "differences" are part of a disease or just normal variation.

As a result of these concerns, the Society strongly discourages venoplasty and/or stenting for CCSVI.

A small study in Canada followed 30 people before and after venoplasty for CCSVI. The researchers found no difference between the patients who had been treated and 10 who had not. Any initial benefits reported tailed off, particularly after about 3 months. By a year, several people's veins had reblocked, but their function was no different from those whose veins had not reblocked.

And a group of Italian reseachers carried out a meta-analysis. They critically analysed the proposed biological basis for CCSVI and reviewed all published studies on CCSVI and its ultrasound methodology. They found no supportive scientific evidence for any part of the theory that CCSVI is linked with MS. They feel that CCSVI may be a stand-alone condition, which should be investigated in its own right - but it's not linked to MS.

People have called me anti-CCSVI. That's not accurate - or wasn't. When I first heard about the idea I was interested. Who wouldn't be? I'd love a cure for my MS. But I knew really rigorous research was needed, to see if Zamboni's results could be repeated. As time has gone on, it's become increasingly apparent that the theory just doesn't hold water. If people want to have their veins Dyno-Rodded, well I suppose that's up to them. But I don't want scarce NHS funds paying for it.

On that (rather controversial) note I'll end Part 1 of this roundup. I'll try to do Part 2, dealing with treatments, tomorrow.

Spoon overdrafts and the #WCA

It's difficult. I'd love to blog more. I'd love to do so many other things more too! Go out with friends, go shopping, go on holiday, keep on with my voluntary work, hold down a job...

But I'm a spoonie. I'm dreadfully, cripplingly fatigued because of long-term illness - in my case multiple sclerosis. And not only am I short on energy in the first place, but it takes me ages to recover after doing anything.

This weekend is an example. My beautiful, much loved cat Bing died on Friday. It was very, very stressful. Then on Sunday I drove to Oxford for lunch. Before I took ill, I wouldn't have thought twice about driving 60 miles each way for lunch. Now, it's an expedition of Amazonian proportions.

Today is Tuesday. I've not been out of my PJs since Sunday night. I really need to go into town to the bank, but my body's having none of it. It is, in fact, my spoon overdraft that's stopping me dealing with my financial one until I've got that blasted spoon level back up again.

And that's just one of the many problems with the Work Capability Assessment, which decides whether - and at what rate - people should get Employment and Support Allowance (ESA). It asks nothing at all about fatigue. It asks whether you can do a task once, but not whether you can do it repeatedly. It doesn't ask how your ability to work is affected by stress. ("Sorry, Mr. Employer, I can't come in this week. I'm tired cos my cat died.")

It's no wonder that so many people and organisations, including GPs, have denounced the WCA as inadequate. Staff members of ATOS, the company which carries out the assessments, have expressed concerns that not enough time is allowed for each appointment, for what are often complex cases with multiple comorbidities.

Karen Sherlock had multiple comorbidities - basically a lot of bad shit going on - but in her WCA she was put into the "work-related activity" group. That means they thought she'd be able to do some work, eventually.

Well, she couldn't. After a year's frantic, terrified gathering of evidence, Karen's appeal was successful, and she was placed in the support group.

And this week, two weeks after that decision, she died.

Wouldn't it be a wonderful memorial to Karen if this bluntest of blunt instruments were to be consigned to the history books forever? Let's continue to do åll we can, for Karen and its other victims.

The MS Trust hits the airwaves!

The excellent MS Trust has been selected to give a Radio 4 appeal this Sunday. As well as bringing in much-needed donations, the appeal will raise awareness of the charity, letting people with MS, their friends and family know about the support available to them. Money raised will be going to help fund the Information Service, which is available free to anyone with a question about MS.

The appeal will be broadcast on Sunday at 07.55 and 21.26, and again the following Thursday at 15.27. Full details are here.

Please share this information, so that the appeal gets a really good audience! Please also listen, and consider donating if you're able to.

And if that doesn't grab your imagination, have a virtual stroll round the Secret Art Show: small pieces of art, some by international artists, all sold anonymously at the same price. You only  discover who yout piece is by when you receive it.

It's all as exciting as Mr Exciting, the Mayor of Exciting Town!

The Spoonie Creation: a parody

The Spoonie Creation

 
1. In the beginning God created the heaven and the earth.

2. And the earth was without form, and void; and darkness was upon the face of the deep. And the Spirit of God moved upon the face of the waters. But he did not realise that the Devil was chasing him, seeking mischief to perform.

3. And God said, Let there be light: and there was light.

4. And God saw the light, that it was good: and God divided the light from the darkness.

5. And God called the light Day, and the darkness he called Night. And the Devil said: Day, Night? Wait till I come up with Spoonies, for they will either sleep too much or not at all. And the evening and the morning were the first day.

6. And God said, Let there be a firmament in the midst of the waters, and let it divide the waters from the waters.

7. And God made the firmament, and divided the waters which were under the firmament from the waters which were above the firmament: and it was so.

8. And God called the firmament Heaven. And the evening and the morning were the second day.

 9. And God said, Let the waters under the heaven be gathered together unto one place, and let the dry land appear: and it was so. And the Devil said, Ah, that'll be good for Spoonies to fall onto. Nice and hard.

10. And God called the dry land Earth; and the gathering together of the waters called he Seas: and God saw that it was good. And the Devil said: But let's have some more fun with the Spoonies, and make the dry land sometimes like unto the waters of the sea, raging even as a tempest, but let not the Spoonies know from one hour to the next which it shall be, and verily our mirth shall be great.*

11. And God said, Let the earth bring forth grass, the herb yielding seed, and the fruit tree yielding fruit after his kind, whose seed is in itself, upon the earth: and it was so.

12. And the earth brought forth grass, and herb yielding seed after his kind, and the tree yielding fruit, whose seed was in itself, after his kind: and God saw that it was good.

13. And the evening and the morning were the third day.

14. And God said, Let there be lights in the firmament of the heaven to divide the day from the night; and let them be for signs, and for seasons, and for days, and years:

15. and let them be for lights in the firmament of the heaven to give light upon the earth: and it was so.

16. And God made two great lights; the greater light to rule the day, and the lesser light to rule the night: he made the stars also.

17. And God set them in the firmament of the heaven to give light upon the earth,

18. and to rule over the day and over the night, and to divide the light from the darkness: and God saw that it was good.

19. And the evening and the morning were the fourth day.

20. And God said, Let the waters bring forth abundantly the moving creature that hath life, and fowl that may fly above the earth in the open firmament of heaven. And the Devil said Foul? That'll be the Conservatives.

21. And God created great whales, and every living creature that moveth, which the waters brought forth abundantly, after their kind, and every winged fowl after his kind: and God saw that it was good. And the Devil said, I see,they have to be able to move. That'll count out some of these Spoonies I have planned.

22. And God blessed them, saying, Be fruitful, and multiply, and fill the waters in the seas, and let fowl multiply in the earth. And the Devil did ensure that all politicians multiplied.

23. And the evening and the morning were the fifth day.

24. And God said, Let the earth bring forth the living creature after his kind, cattle, and creeping thing, and beast of the earth after his kind: and it was so.

25. And God made the beast of the earth after his kind, and cattle after their kind, and every thing that creepeth upon the earth after his kind: and God saw that it was good. And the Devil said, Let the things that creepeth upon the earth be named The Coalition.

26. And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

27. So God created man in his own image, in the image of God created he him; male and female created he them .And the Devil created Spoonies, who were in the image of God and looked so well but had bits that did not work properly. And the Spoonies had dominion over nothing.

28. And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth, and subdue it: and have dominion over the fish of the sea, and over the fowl of the air, and over every living thing that moveth upon the earth. And the Devil said, Apart from Spoonies, who are clearly not interested in being fruitful and multiplying, and shall be the lowest of the low.

29. And God said, Behold, I have given you every herb bearing seed, which is upon the face of all the earth, and every tree, in the which is the fruit of a tree yielding seed; to you it shall be for meat. And lo, certain of the Spoonies did say, Herb? Where?

30. And to every beast of the earth, and to every fowl of the air, and to every thing that creepeth upon the earth, wherein there is life, I have given every green herb for meat: and it was so. And the Devil suggested the Welfare Reform Bill and the NHS Bill to the creeping things that were the Coalition.

31. And God saw every thing that he had made, and, behold, it was very good. And the Devil also rejoiced in that which he had made. And the evening and the morning were the sixth day.

32. And on the seventh day Spoonie Jebus necked some Oramorph and had a nap to build up his strength. For verily, there was a hell of a mess to sort out.

*Devil section by Meg Morrigan

Taking the piss

So what would make you want to have a tube shoved up your bahookie and have someone give injections to your bladder from the inside? There's some people would pay good money for that I know, but it's not really to my taste.

Well, it was the latest treatment for my bladder problems.For a long time now, I've had frequency (needing to go all the time) and urgency (once I need to go, I need to go NOW.) I've also had regular UTIs. Last year this reached ridiculous levels. When I stopped antibiotics for one infection, I would have about one blissful bacterium-free week, before succumbing again.

All this was down to my detrusor muscle, the muscle that contracts when you're weeing to squeeze the wee out. I have overactive bladder as a symptom of MS, where the muscle reacts on a hair-trigger: it sends the "I'm full" signal to the brain well before that's actually the case; it responds to external stimuli like running water or opening the front door; and its contractions cause stress and urge incontinence.

So what could be done? Well, obviously, antibiotics for the infections: I worked my way through a wide range, collecting allergies and interesting side-effects along the way (mostly hallucinations - the gazelle giving me a jar of hand cream was my favourite).

I took part in a drug trial, self-injecting twice a week. I knew when I was on the drug rather than the placebo because I got skin reactions. It really, really helped. But then the trial ended, and I was back to the standard medication.

The standard medication is anticholinergic drugs, which help to stop the detrusor muscle from over-reacting. They help, a little, but not much. I still have a lot of problems.

So it was proposed that I should have botox. No, not up there. Down there. The idea is to partially paralyse the detrusor muscle so that it's not so twitchy. And the way they access it is through what's normally the exit.

In due course, therefore, I found myself on an operating table with my legs up in stirrups, with a charming consultant in there at the business end shoving a tube with a camera attached up where only one man has been before (the urologist who did my previous cystoscopy). The equipment that let him see what was going on also had a small screen that I could see (if I wanted, which being me of course I did), and he was good enough to give me a guided tour of my own bladder - this is the top, this is where the left kidney opens into the bladder etc etc.

The actual injections...weren't nice. But hey, I've got MS, I've experienced a lot worse. If you can imagine someone pinching a bit of your insides, FROM the inside, really hard, that's kind of what each one is like.

But it was soon over, and there was no pain afterwards. And the very next morning, I woke up, needing the loo, yes, but not desperate - I'd forgotten what that felt like! Generally the effects have been wonderful. I can hold on for absolute hours, as opposed to my previous average of about 40 seconds!

Predictably enough, with my history, I got an infection, but that was soon sorted out with antibiotics. I'm still on a low dose, to protect me against any more. The ongoing side-effect is that I've kind of gone the opposite way to where I was before. I now can't wee when I want to! Well, I can, but it's hard work, y'know? Seems the injections have worked a little too well. Hopefully that'll settle down in time. In the meantime it's still preferable to my previous problems.

So all in all a positive experience, and I'd definitely recommend botox if you have overactive bladder and the standard meds aren't helping you. I'll have to have it repeated every 6-9 months, but that's small price to pay for the benefits.

And, of course, for having the smoother, more youthful bladder I've always dreamed of...

#BADD Dead Happy, Derek, and disablism

Recently employees of a Cambridge clothing company, Dead Happy, thought up a promotional scheme. They wanted fans of the company to put stickers, preferably rude, onto the back of mobility scooters, then take photos to upload onto Facebook.

I should stress that this wasn't official company policy: as soon as the boss of the company found out about it, he removed the Facebook posts in question. The police have taken the incident very seriously, and at the last report, were speaking to those concerned.

But it's just a prank, right? What harm can it do?

I haven't blogged so far about Ricky Gervais's pilot show Derek, partly because I wasn't sure myself what my feelings were about it. Was I uncomfortable about the idea because I've never really been a fan of Gervais? Because I was unconvinced by his conversion after "mong-gate" last year? Apparently he's been using the word "mong" in his stage act for several years, followed by a mock-coy "I'm not supposed to say that, am I?", so his protestations thaat he didn't know the word was offensive ring hollow.

Gervais insisted that Derek isn't disabled, saying that:

Derek is a fictional character and is defined by his creator. Me. If I say I don't mean him to be disabled then that’s it. A fictional doctor can't come along and prove me wrong.

Well, that all sounds fine. Except that to me, and the huge majority of people I know who watched the programme, Derek very clearly was disabled, either with mild learning difficulties or (some people suggested) on the autistic spectrum. The people I'm talking about are people with disabilities themselves, or parents of children with autism. Y'know, people who actually know what they're talking about when it comes to disability, unlike Ricky Gervais - remember he claimed not to know that "mong" was an offensive term for people with Down's syndrome?

What effect did Gervais want Derek to produce in the viewer? Well the programme was billed as a "comedy drama". Looking at the hashtag #Derek on Twitter during the programme, most mainstream viewers seemed to find it very funny - but they were laughing at Derek, not with him. A minority found the programme sad, because of Derek's condition.

Afterwards, Ricky Gervais tweeted:

One review of Derek said they weren't sure if they were meant to laugh or cry. I'd suggest that whatever happened was the correct response

Some writers can produce work that makes the viewer both laugh and cry. Is Gervais one such? I would suggest not on this evidence, because he encourages people to laugh at his characters and sympathise with them, rather than laughing with and empathising with them.

But what harm can a TV programme do?

Well, a couple of days after the programme was broadcast, I was at my local shops. A bunch of kids yelled "Oi, Derek!" at me. I'm female, I don't have learning difficulties, and I use a wheelchair. The only similarity I can think of between me and Derek is...we're both disabled. For these kids at least, the programme was making disabled people in general into objects of derision and targets for abuse.

And there's evidence that as disablist speech becomes more common, so does disablist hate crime. A report at the end of 2011 showed that hate crime had risen by more than 75% in one year. Disabled people report being spat at, having faeces pushed through their letterboxes, and even being tipped out of their wheelchairs or physically attacked.

In just one terrible example, Fiona Pilkington killed her disabled daughter then committed suicide after years of constant abuse from local youths. In at least one case, a man who called the police several times to report abuse was recorded as a nuisance caller.

The reasons for this rise are many. One is the prevailing "anti-scrounger" rhetoric from the Government and the red-tops,which has the tendency to paint all disabled people (working or not) as thieves, stealing undeserved monies from the apocryphal "hard-working taxpayer".

But another has to be the dehumanisation of disabled people. If we're suitable objects for laughter - or pity - than what does it matter if you take it a little further? We're not like them, after all. We're different. But somehow, all the same: all disabled.

If you're the victim of disability hate crime (or any other kind), please report it. You'll get the support you need, the offenders will hopefully be dealt with, and it'll send out a message to the wider community that this is just not acceptable.

And who knows? Maybe, just maybe, one day Ricky Gervais will work out that the way he takes the mickey out of the disabled really isn't funny!

This is my post for Blogging Against Disablism Day 2012. Follow the link to the Goldfish's always excellent blog for lots more blog posts on the general topic of disablism.