The superhighway to friendship

My computer network has been acting up, for a week or so. Or possibly it's my computers. But both of them at the same time? And my shiny new smartphone as well? No, it's the network, I'm pretty sure.

I can get online. But not wirelessly. And I can only access certain websites.

I've gone through a lengthy process of:

1. Swear
2. Hit side of computer
3. Reboot computer
4. Restart router
5. Change settings on router
6. Change them back again when that didn't work
7. Panic when I think I've changed them back wrong
8. And repeat

Now I think I may have to resort to Getting A Man In, which I really resent. I'm a long way from being a tech-head, but I can sort out most things that mess up on the computer. This, however, seems to have defeated me.

Anyway, it's got me to thinking. Since I became disabled, I've spent far more time at home than ever before. In such a situation, it's very easy to become socially isolated. You possibly can't get out as often or as easily to meet friends, you quickly lose contact with work acquaintances, family may begin to resent always having to come to see you instead of travelling being shared.

Access to the internet opens up a huge range of existing and new social contacts: whether it's the ease of emailing, without needing to get out to a postbox; Skype or other free voice chat with someone on the other side of the world; making contact with other people with the same condition, in a chatroom, on a Facebook group, or through a Twitter hashtag; even just, as I did this morning on Twitter, discovering that someone I already chatted to also endures severe pain (we fell on each others' necks like twins separated at birth).

Disabled people are less likely to be online than non-disabled, and that's a real shame. I think we really need it, and for more things than ordering pizzas and viewing porn. Valuable as those activities are...

Rant

I just popped out, down to the local shops. At the final road junction before I got there, a woman had parked across the dropped kerb, and was still sitting in the car. I asked her, very politely, to move.

It pains me to report to you that I was greeted with a load of swearie-words. About the only bit I can repeat to your tender ears (/eyes), reader, is:

"How was I supposed to know you'd be here?"

Well you know what, love? THAT'S THE WHOLE BLOODY POINT! If it was just a case of "Margo'll be along at 12.57, Sunday lunchtime", you could roll your car out of the way for the moment and then roll it back. But it's not. I could be along at any time. (Well, not early mornings, to be fair. I do have MS.) So could any other wheelchair or scooter user, or someone pushing a buggy.

That's why we need the dropped kerb to be free. That's why the powers that be, in a rare example of common sense, have demarcated it with a double yellow line.

So don't fecking park your car across it in the first place. OK? OK, good. I'm glad we've got that sorted.

Bread and circuses

Last Thursday, the House of Commons spent some hours debating whether the use of wild animals should be banned in circuses. It was quite a heated debate. (Personally, I can't see the issue. Of course it should be banned. Duh.)

Meanwhile, I spent the days leading up to yesterday (B for Benefits Day!) living off bread and cheese. I ran out of butter on Wednesday, so it was dry bread from then on.

For now I have money. And food. But the cost of living keeps going up, and my income doesn't, or not enough. Many, many others are in the same situation as me. Thousands of them are hard-working people, who happen to be in low-paid jobs. Others are deeply vulnerable people, unable through no fault of their own to work. They may have a physical disability or learning difficulty, they may have mental health problems, they may be carers for a loved one.

Of course it's important to ensure the welfare of circus animals. But don't you think it would be more important to make sure that everyone in the country has enough money to live on? As opposed to the current government proposals, which seem aimed at reducing our incomes still further..

Bread and cheese, anyone?

Selecting disability, naturally

A hundred years ago or so, most of us disabled people wouldn't have had the lives we do today. I know we complain about welfare reform (and we're right to do so) but back then, we'd have been in workhouses. And that's if we were alive at all. Natural selection - evolution - might have had a word to say about our continued existence.

According to Darwin's theory of natural selection, a characteristic (let's say being taller) becomes more or less common in a population depending on whether it makes the individuals with it more reproductively successful or not. That is, if being taller means they have more offspring, the genes that gave rise to that characteristic are passed on to a larger group, and become more common. If they have fewer offspring, they don't.

All very interesting (for sad science geeks like me, anyway). But how does it relate to disability?

Many disabilities are caused, or at least influenced, by genes carried by the individuals concerned. Those genes are as controlled by the rules of natural selection as any others. If the gene for a disability means more offspring, it should become more common, along with the disability. If it means fewer offspring, it should become less common, and ultimately be eliminated from the population. "Fewer offspring" could arise through the individual dying before reproductive age.

However (predictably) it's not always quite as simple as that. Sickle cell anaemia is a genetic blood disorder where the red blood cells take on a sickle shape. This decreases the cells' flexibility and increases the risk of various complications. It occurs most commonly in people (or their descendants) from tropical or sub-tropical regions where malaria is or was common.

Sickle cell is a recessive condition: that is, both parents have to be carriers, and the child has to inherit a copy of the sickle cell gene from each of them. Being a carrier (known as "sickle cell trait") appears to give some protection against malaria. So natural selection seems to have provided a play-off between the parents having protection against malaria, and each of their children having a one in four chance of developing sickle cell disease with its severe complications and likelihood of dying young.

Kin selection is a theory explaining why individuals behave in ways that favour their relatives rather than themselves, even at a cost to their own survival and/or reproduction. The classic example is a beehive, where asexual drones work for the benefit of the all-powerful queen bee. The kin selection theory states that they do this in order to help pass on the queen's genes, which are so close to their own.

People with genes that lead to disability are part of a family. Whether or not they have progeny themselves, others in their family are likely to - and the genes for the disability are quite possibly hidden in their genomes too. As families support each other, they make it more likely that their genes, including "defective" ones, will be passed on.

And, of course, disabled people make many contributions to the humanity-hive. In paid or voluntary work; as children, siblings, lovers, spouses, and parents; as employers (or the reason people are employed); and as friends, giving emotional support. I'm sure you can think of many more.

The genes that code for disabilities may not always be helpful. But I don't think evolution will be eliminating them just yet. Factors like carrier status being beneficial, and kin selection, mean they are neutral at worst in their effect.

Juggling

I'm currently listening to music (the album A Curious Thing by Amy MacDonald, if you're interested), watching athletics on the telly, and attempting to write this. I used to be an ace multi-tasker. These days, my MS-ified self can barely cope with one thing at a time. So the fact that I've taken on three at once means that at least two of them are going to suffer. Life with MS is all about juggling your commitments, because of the effects it has on your cognitive skills.

Cognition is the term used to describe a person's "thinking ability". People will often realise they are starting to have cognitive problems when they begin to find it hard to read books or follow conversations. Cognition includes:

• focusing, maintaining and shifting your attention
• learning, remembering and recalling information
• understanding and using language appropriately and effectively
• performing maths calculations
• ‘executive function’ such as planning actions, performing tasks in the correct order, controlling one’s impulses, transferring learning from one situation to another, and working with abstract concepts

Mild cognitive problems are common in MS.It's thought that somewhere between 45% and 65% of people with MS have some degree of cognitive problem, though as with every symptom the degree and profile varies from person to person. It is most severe in people with secondary progressive MS. People with primary progressive MS seem to be rarely affected, possibly because this type of MS prefers to attack the spinal cord rather than the brain.

The most common problems are in:

• Learning and memory - almost always short term memory
• Attention, concentration and mental speed - it may be difficult to concentrate for long periods of time or keep track of what you're doing if you're interrupted, do several jobs at once or carry on a conversation if the TV or radio is on.
• Problem solving - planning, performing and evaluating tasks - you know what you want to do but find it difficult to know where to begin, or to work out the steps needed. Problems can lead to confusion and stress, which can in turn increase learning and memory problems.
• Word finding - particularly nouns, including abstract nouns. It can be difficult to take part in a conversation because it takes too long to express an opinion or find the correct word, and the discussion has moved on.

There seems to be little association between someone's level of physical disability and their cognitive problems. Cognitive changes can worsen with a relapse, or when the person is tired. People with MS rarely experience cognitive impairment as bad as that with (for instance) Alzheimer's disease, and then only in the very late stages of the disease.

The level of impairment can stabilise at any time rather than continuing to progress. Most people with MS who have cognitive impairment have mild symptoms.

Most of the ways of trying to deal with cognitive impairment are behavioural. They include things like:

• Writing everything down. Rely heavily on a diary, loose-leaf organiser and/or palm-held computer/organiser.
• Having a particular place for everything, always putting things back where they belong and encouraging others to do the same.
• Trying to focus your attention more keenly on the things that are important. Repeating important things that need to be remembered over and over in your head will often keep them there.
• Trying to jot everything down, including people's names and how they appear to you. Often just the act of writing something down will commit it to memory better. Pictures also help. These can be mental or drawn.
• Word recall is a problem that is often reported in MS. If you suffer from this, try not to get hung up about the exact word. People are often happy to chime in with the right word anyway - let them.
• Working slowly. Take your time to plan things and don't be rushed by anyone. Use paper and/or a calculator as necessary.

So, I've moved on to Snow Patrol's Eyes Open, the athletics are still on, and I'm thinking hard here about what my conclusions should be. But given my cognitive impairment, and my problems with pattern formation and word finding, I don't really have any. Except that I really should stick to one thing at a time...

Smoke gets in your eyes - or is it Optic Neuritis?

I've noticed, among people that I know, that a lot of people with MS seem to smoke. I've often wondered whether it's the smoking that causes their MS, or having MS that makes them not want to give up. Or is there a third factor that's related to both of them?

Incidentally, I should declare a conflict of interest here, being on day 3 of giving up smoking. If I should come over all sanctimonious ex-smoker, you have my full permission to kill me, OK?

Smoking is now accepted as a risk factor for MS (as is passive smoking), and it appears that it may also make the disease course worse, both clinically and on MRI. Heavier smoking seems to increase the risk. Smoking is also associated with the type of MS someone has. Current smokers are more likely to have primary progressive MS, and smokers progress from relapsing-remitting MS to secondary progressive MS faster than those who have never smoked.

In addition, people with MS who smoke are more likely to have other auto-immune conditions, such as lupus, Crohn's disease, or pernicious anaemia. It seems that nicotine can precipitate the inflammatory response. Having more than one condition affects the length of time between symptom onset and diagnosis, disability progression, and health-related quality of life.

Smoking is associated with disruption of the blood-brain barrier, which will make it easier for immune system cells to get through and cause damage, with more lesions, and with more atrophy (wasting away) of the brain.

Do smokers with MS get the same encouragement as others to give up? Several friends with MS have told me of their GPs saying, in as many words:

In your situation, if smoking makes you happy - carry on!

In other cases, people may feel that they're buggered physically anyway, so why go through the stress of giving up? One friend told me that she resented being told to give up smoking, something she enjoyed doing, when she'd already lost so much.

Many people with MS also smoke those special herbal cigarettes for people with MS.

Could the smoking of cannabis by people with MS (most often for the relief of pain or spasticity, or to help with sleep) be linked to the high levels of cigarette smoking? After all, many cannabis users smoke cigarettes.

So what conclusions can we reach? Yes, smoking is a risk factor for MS - as it is for many other conditions. There's no question that it would be sensible for us not to start smoking, and if we have started, to stop. But we're not necessarily sensible. There are all sorts of reasons people smoke, that can outweigh possible, statistical risks.

I'm not going to tell anyone to give up smoking. I smoked for many years when I was fully aware of the risks - not just for my MS, but everything else too. I'm giving up now because I think it's finally the right time, for me. We all need the facts though, to be able to make an informed decision about risks and benefits.

Now, back to Smoke Gets In Your Eyes:

(Smoke Gets In Your Eyes is a classic song, a standard, and very many people have recorded it. But being the age I am, this is the version I most remember, and one I love.)

MS research roundup June 2011

This month's research roundup includes several studies on treatments for MS, particularly Natalizumab (Tysabri). As usual, I'll do my best to arrange the post with risk factors for MS first, then symptoms, diagnosis and treatment.

It's still pretty obscure what causes MS, but researchers in the USA may have gone some way to finding out. It has long been suspected that there is a genetic component to MS, but the relationship is not simple. This study looked at the way a range of environmental factors such as metabolism and Vitamin D-3 levels interacted with four genes (interleukin-7 receptor-alpha, interleukin-2 receptor-alpha, MGAT1 and CTLA-4) to affect certain proteins that regulate the disease. They found that adding Vitamin D-3 or a simple sugar called GlcNAc could help to restore proteins to their normal functions. Sounds like a very promising line of research, and one that could potentially solve the mystery of MS causation.

Spanish researchers have looked at all previous studies investigating links between having been previously infected with Epstein-Barr virus (which causes glandular fever / mononucleosis) and MS, and confirmed that having antibodies to the virus means a higher likelihood of developing MS. The timing of the infection (how long ago) was not relevant. Further research is needed, though - ideally following a group of people from before any of them develop MS symptoms.

I've observed in the past that a high proportion of people with MS seem to be (cigarette!) smokers. A group of Swedish researchers have found that smoking interacts with two genetic factors, having a gene called human leukocyte antigen DRB1*15 and not having human leukocyte antigen A*02.Smokers with both genetic risk factors were 13.5 times as likely to develop MS as non-smokers with neither. The researchers believe that cigarette smoke acts in the lungs to "prime" the immune system and make MS more likely.

Many of us who have MS are fully aware that stressful life events can make our symptoms worse. But can stress cause MS in the first place? No, say researchers from the USA and Norway. They used data from two study of nurses' health, which started in 1976 and 1989. Participants were asked to report their level of stress at work and at home. The researchers found no link between self-reported stress and MS risk. As ever though, more research is needed.

We are used to MRI imaging being used to identify MS lesions, but Italian researchers have found that people with MS also experience atrophy (wasting away) of the brain and spinal cord. The amount of atrophy is linked to the degree of disability. They suggest that in the future MRI could be used to monitor response to treatment.

Now on to treatments, and as I said above several studies on Tysabri have reported this month. There have (quite rightly) been concerns about the risk of developing the potentially fatal brain infection progressive multifocal leukoencephalopathy (PML) while using Tysabri. PML is caused by the reactivation of a virus called Polyomavirus JC (JC virus) in the nervous system. JC virus is carried by many people, and is harmless unless the person has lowered immunity.

A number of different research groups gave conference reports on Tysabri and PML. One group has developed a blood test to check whether there has been previous infection with JC virus: it's thought that these patients will be at higher risk of PML when taking Tysabri, a risk that they must take into account when deciding whether or not to take the medication. Another study confirmed that having been on another immunosuppressant therapy at any point before Tysabri increases the risk of PML.

Although PML is unquestionably serious, survival rates among those who develop it while on Tysabri seem to be better than those with other conditions (such as AIDS), possibly due to the development of modern anteretroviral drugs. Most people with MS who develop PML will survive.

People of African descent who get MS typically have a more severe disease course than average, and are less likely to respond to treatment with interferon-beta. American researchers looked at data for Tysabri use in this group of patients, and confirmed that it worked well, reducing relapse rate by an average of 60% and lesion accumulation by 79%.

Because of the risk of PML, some doctors recommend breaks in treatment with Tysabri. A group of researchers in Canada found that disease activity (measured by relapse rate and lesion growth) returned very rapidly after Tysabri was discontinued, whether or not another treatment was started.

Two studies, in Holland and Germany, followed women who became pregnant while taking Tysabri. Both studies were small, as they included only accidental pregnancies: at the moment women on Tysabri are advised not to get pregnant. Out of a total of 37 pregnancies, 28 were completely normal, 5 ended in miscarriage and one woman had a termination: one child was born with an extra finger. These data are promising, but a much larger study is needed before it can be confirmed that Tysabri is safe in pregnancy.

The increased risk of developing PML while on Tysabri, which is highly successful at slowing disease progression, illustrates the need to balance the risks and benefits of any treatment. Australian researchers have found that MS patients are often prepared to take more risks than their doctors in terms of possible side-effects. This illustrates the importance of healthcare professionals listening to the priorities and views of their patients.

Now on to other treatments. The first treatment for MS, interferon-B, was developed and trialled in the late 1980s. A group of American researchers have tracked down participants in the original trials to see howthey had fared since then. The researchers found that those who received interferon-B were only half as likely to have died as those who received a placebo. It's not clear yet what accounts for this difference, as all the participants were likely to have been on other drugs subsequently. A very significant difference though, and one that needs to be investigated further.

There have been concerns about side-effects from the new oral treatment fingolimod (Gilenya), including a risk of lowered heart rate and a condition called AV block. An American study found that these effects were transient, and usually resolve within six hours without treatment. People should be screened for heart abnormalities before taking Gilenya, though, and carefully observed after the first dose.

Spanish researchers have found that Viagra dramatically reduces symptoms in animals with a condition similar to MS. They are hoping to begin clinical trials soon. I'll be interested to see the results. MS can cause sexual dysfunction, and many men with MS are prescribed Viagra. I've not heard of any of them having "miracle cures" from MS...

It's been found that less than half of people with MS are still consistently taking their disease-modifying drugs after 2 years, possibly because of side effects or people perceiving no benefit from them. What is needed, as we all know, is a cure. Excitingly, American and Chinese scientists have succeeded in making human stem cells convert into astrocytes, the cell type which promotes myelination. In my view, stem cell research is what will eventually provide a cure for MS, and this is a major step forward.

Finally - and, I'm afraid, rather depressingly - some British research into the use of antidepressants in MS. Although treatment with antidepressants was always preferable to no treatment, there was no definite evidence that quality of life was improved as a result. Depression is a very common symptom of MS, and it's important that people feel they can get an effective treatment when it's needed. More research is needed to discover whether some anti-depressants are more helpful in MS than others.

So, it was another bumper bundle this month. Does the reporting of research results slow down in the summer? Let you know in July!