Heartstopping football

It's great news that Bolton footballer Fabrice Muamba has been discharged from hospital, following the mid-game cardiac arrest that nearly ended his life.

That he's done as well as he has is a tribute to the expert care he received, on the pitch, in the ambulance, and in the London Heart Hospital, as well as his own youth and physical fitness.

The same day as Muamba's collapse, and more than 400 miles further north, Kilmarnock beat Celtic in the Scottish League Cup. But their celebrations were cut short when midfielder Liam Kelly's father Jack had a heart attack in the terraces, and died soon after in hospital.

It seemed like sudden deaths during football matches were everywhere, though probably they were no more common than more before, just being reported more. Chris Ralph, who was in his late 40s, collapsed and died from a "suspected cardiac arrest" during a veterans' county cup final in Devon. Further afield, 25 year old Piermario Morosini, a former Italy Under-21 International, also collapsed on the pitch, and couldn't be revived.

As I said above, it appears that the media have decided "cardiac arrest at football matches" is the flavour of the month. One thing I've noticed in the many reports is a confusion, even conflation, of heart attack and cardiac arrest. They're not the same. No, honestly.

The heart is a muscle. To do its work, it needs its own supply of blood vessels to bring it oxygen. They're called the coronary arteries, which is why you might sometimes hear a heart attack referred to as a coronary. If there's a blockage in one of those vessels, you get a heart attack. Where that blockage is determines how bad the heart attack is.

If only a small part of the muscle is starved of blood, that's a minor heart attack. The person is likely to have crushing central chest pain (possibly radiating into their left arm, jaw, and/or back), be pale, cold and clammy, and feel sick and dizzy. They need to get to hospital urgently. But their heart is still beating. No cardiac arrest.

Most certainly a more major heart attack can cause cardiac arrest - but so can many other things. Actually, if you think about it, ultimately we all die of cardiac arrest, don't we? And we've certainly not all had heart attacks.

So the take-home message today is: heart attacks and cardiac arrest are not the same thing! Take-home message 2: why not go on a first aid course so you'll know what to do if someone collapses?

MS Research Roundup April 2012

Some more really interesting MS research projects have reported recently. It's an exciting time!

All of us with MS have probably had MRIs, for diagnosis or to check on progression. But there has always been a paradox: the number of lesions in the brain doesn't correlate with the effects of the disease.

Researchers looked at the number of lesions in different parts of the brain, and found that they could be correlated with specific symptoms. For instance, lesions in the precuneus and precentral gyrus were most predictive of mobility problems.

MRIs have poor resolution, and contrast media such as gadolinium do not necessarily measure what they aim to: they often show fluid rather than inflammation. This research could help MRIs to be used with a new precision, as a truly useful clinical tool.

We already know that many women find their MS symptoms improve during pregnancy. Now Australian researchers have found that even one pregnancy halves a woman's risk of developing MS in the future.For women who have had two or more pregnancies, the risk is a quarter. The researchers suspect this may be the reason the rate of MS in women has inched up over the last few decades, as more and more women have decided to have babies later or not at all.

An interesting study from a group of Belgian researchers. They got nearly 1400 people with relapsing remitting MS about their diet, drinking habits, and whether they smoked. They found that people who consumed alcohol, wine, fish and coffee on a regular basis took 4-7 more years to reach the point where they needed a walking aid than those who never consumed them. They didn't find the same pattern in people with progressive MS. Those who smoked cigarettes needed walking aids earlier than those who didn't.

I'll just have to hope that my intravenous coffee drip offsets my cigarettes then...

Research is continuing on various aspects of the CCSVI theory. The theory states that malformed and blocked veins in the neck lead to the deposition of iron in the brain, which in turn leads to autoimmunity and demyelination of nerve cells.

A group of American researchers tested this theory by tying mice's jugular veins shut. The mice were then observed for 6 months. There were no signs of inflammation or demyelination on CT or MRI, and no clinical change. This result strongly suggests that CCSVI is not responsible for demyelination, and therefore not responsible for MS.

We've recently seen the approval of the first oral drug for MS, Gilenya. The next to come into clinical use is likely to be BG-12, which has had extremely good results in trials. When taken three times a day, it halved the relapse rate compared to a placebo tablet.

Now the manufacturers, Biogen Idec, have applied to the FDA for approval for BG-12. They're hoping for priority processing which will shave some time off the process: if they don't get it, BG-12 should be released in the USA by the end of 2012 or early in 2013. Hopefully it'll be introduced in Europe soon afterwards, and so on around the globe.

The next study is of particular interest to me, as I've recently had this treatment myself. (Watch this space - I'm planning to post about it.)

BOTOX^® is already approved in several countries including the UK and USA for the treatment of overactive bladder resulting from neurological problems such as MS and spinal cord injury. It works by relaxing the bladder muscles that were previously going into spasm, causing urgency, frequency, and possible incontinence.

Now two Phase 3 studies have shown positive results for BOTOX^® for idiopathic (cause not known) overactive bladder. These results are just further confirmation of the usefulness of BOTOX® in treating overactive bladder.

Many people with MS fall: falls can result in injury, and the fear of falling can result in severely restricted mobility. American researchers asked 575 people with MS about their level of disability, how often they fell, and how afraid they were of falling. Nearly two thirds were concerned about falling, and over two thirds restricted their activities because of fear of falling. People with moderate mobility problems had the highest number of falls, and those with the worst mobility (ie non-walkers) had the fewest.

What can we do with this information? I suppose it's a question of awareness.If you know you're in the group most at risk of falls - the group with moderate mobility problems - you need to take particular care not to lean too far over, not to turn your body without moving your feet, and so on.

Researchers in Germany asked several hundred people who felt severely affected by their MS whether they wanted their doctors to talk to them about their disease progression, and about end-of-life issues.Three-quarters wanted to discuss their disease progression, but less than half were interested in talking about end-of-life issues like whether they would want to go on a life support machine or whether they would want to be resuscitated should the need arise.

These are important but very sensitive topics. Doctors must show great sensitivity when raising them.

So that's it for this research roundup.See you next time!

Doctor Doctor, can't you feel I'm burning burning? #braveheart

Doctors do, in the main, appreciate that the symptoms of MS can include dreadful pain. It can be burning, stabbing, shooting, like an electric shock, pins and needles, or - my personal favourite - like your limb is being sawed through. Lovely.

When this pain is bad, it really stops you in your tracks: but the DWP don't seem to see it as relevant to whether you can work or not.

If you're claiming Employment and Support Allowance, you're likely to be called to a Work Capability Assessment, carried out by the private company Atos. Incidentally, Atos is getting these assessments spectacularly wrong - and that's if you can get into their offce, if it's not one of the ones that's inaccessible to people in wheelchairs.

The assessments are done by "healthcare professionals" - doctors, nurses, physiotherapists or occupational therapists - who may have no knowledge at all of your condition. They complete a computer questionnaire based on your answers.

The questions are all about your ability to perform physical tasks. There is no recognition of pain, fatigue, or the fact that you might be able to perform a task once, but not repeatedly.

Never mind us not being fit for work. The Atos tests aren't fit for purpose.

So it's great that Scotland's GPs have called for an end to Work Capability Assessments.We, sick and disabled people, have known about the problems with them for a long time, but it's great to have recognition  from the medical world. Dr Steven Carty, an Edinburgh GP, said:

This sends a ray of hope to some of the weakest and most vulnerable in society.

It also sends a clear message to other representative bodies including the General Medical Council (GMC) of the significant concerns shared by many GPs across the country.

In my opinion the current contractual arrangements between the DWP and General Practice are unsustainable. The WCA as performed by ATOS is not an effective or safe method of determining "fitness to work" and this must be addressed.

All doctors are duty bound by the GMC to report any system or process that may be harmful to patients. The WCA is a harmful process. Scottish GPs have spoken: the GMC cannot remain silent on this matter any longer.

Let's hope the BMA and GMC respond to this call and also condemn the WCA (so many acronyms!)

We certainly can't go on with this flawed system, which doesn't recognise symptoms which are such a major part of sickness and disability for so many people.

 

Radar location

A quick post, to sing the praises of an essential bit of kit. It's indispensible for anyone who has a disability that means when they need to wee, they need to go now, people with bowel problems, if you need a bit more room to manoeuvre, or if you need the assistance of someone else.

It's the Radar Key, a universal key that fits the doors  of thousands of disabled loos around the country. In most cases there'll be a key available somewhere - but who wants to go searching for the railway station manager, or trying to attract the attention of the bar staff in a busy pub, when they're desperate? Much simpler to have your own!

Having your own key also avoids the potential embarrassment of needing to announce out loud that you need the loo. Able-bodied people don't have to go through that, so why should we?

Radar keys really can be invaluable, and they only cost a few pounds. A must-get!

Life's a trial

When I'm doing research roundups, I quite often talk about clinical trials being "Phase 2" or "Phase 3". But what do these terms mean? The development of a new drug or other intervention is a long-term process. commonly taking 12 or more years before being available to patients. The regulatory process adds another hefty chunk of time.What's happening for it all to take so long?

Research begins in the laboratory, where potential treatments are tested on animals: for instance, there is a strain of mice which have a condition very like MS. Testing drugs on them gives a reasonable idea of whether they're likely to help people with MS. Around 1000 potential drugs are tested for each one that makes it to clinical trials.

The use of animals in drug trials is a whole other question, one I might discuss in a future blog post. If the drug is helpful for the animals (and how that's worked out is again a subject for a future blog post), the researchers will look for more funding to test it out on people, in clinical trials. The clinical trial process has four phases.

Phase 0 Very low doses of the drug are given to 10-15 people to see whether the drug does what was expected in humans. Tests are carried out to check what the drug does to the body, and what the body does to the drug.

Phase I The drug is tested on usually 20-100 healthy volunteers, to check that it is safe. These volunteers are normally paid, as they won't get any health benefit from participating, and are taking the risk of being given an untested drug. Some of you may remember news coverage of a Phase 1 trial in 2006 where 6 healthy volunteers became violently ill after taking a new drug.

Phase II Designed to assess how well the drug works, and what is the best dosage. Between 100 and 300 volunteer patients take either the drug or something else - the existing treatment if there is one, or a placebo.

Phase III The drug is tested on a large number of patients over a number of sites. This phase aims to be the definitive assessment of how effective the drug is, compared with any current treatments. Sometimes a manufacturer wants to prove that their drug works for other patients or other conditions than those originally established. In that case the Phase 2 or 3 trial would be the first stage.

Phase IV This is the period of surveillance once the drug is on the market. Safety continues to be checked, and technical support is available.

Clinical trials can take a long time to run. It can be difficult to recruit the number of people needed, particularly in Phase III. For many long-term conditions, it can take several months to see any effect from the drug. I recently participated in a Phase II trial for a full year.

Most Phase III trials (and some Phase II) are randomised, double-blind and controlled.

• Randomised means that participants are randomly assigned to the treatment or placebo groups
• Double-blind means that neither the participant nor the researchers know whether they're receiving the treatment or the placebo. It's important that the researchers don't know, as they might subconsciously behave differently to people in the two groups.
• Controlled means that one group receives a placebo (or the existing treatment, if there is one).This means that the effect of the new drug can be isolated. Is it better than the existing treatment? If so, how much better?
• Some trials are designed to cross-over, This means that halfway through the trial period, the participants swap over to receiving the other treatment. Those who were gettng the active drug will change onto the placebo, and vice versa.

After the trial process, the manufacturer will apply for the drug to be licensed, which has to be done separately in different parts of the globe.Here in the UK, once it's been licensed, the action then moves to an agency called NICE, who decide whether the NHS should fund treatments.

Their decisions are based on cost-effectiveness, potentially leading to some controversial outcomes. Recently they've refused funding to the new MS drug Gilenya, and there have been several decisions where funding has been refused for expensive cancer drugs which were likely to give only a few more months of life.

In some cases, local Primary Care Trusts still have to agree to fund the treatment. There have been problems recently with Sativex, which is licensed for use in MS spasticity if other treatments don't help. Many PCTs are refusing to fund it. The MS Society is campaigning on this: if you have funding for Sativex refused, they provide advice on what steps to take.

You're most likely to find out about trials through your consultant. If you'd be interested in participating in a research project (without commiting yourself to anything!) let them know.

It can't be denied that there are some risks involved, as there are with any treatment. But I found trial participation interesting, and if the drug concerned goes on to be approved I'll feel quite proud: I was part of that!

MS research roundup February 2012

With apologies for the long gap since the last one - here, finally, is my latest research roundup. And there's some real goodies this time!

MS is conventionally seen as an auto-immune condition. For some reason, not yet fully understood, the body's immune system begins to attack the myelin sheath surrounding the nerves. This has recently been challenged by the CCSVI theory, which states that MS is caused by blockages in the veins of the neck leading to back-up of blood and consequent deposition of iron in the brain.

Now an American researcher has developed a new theory. She believes that MS is a metabolic disease, caused by the body having problems dealing with fats in the diet. The rise in the number of cases over the last few decades is due to us, as a population, moving to a diet high in carbohydrates and saturated fats. Oxidised LDL cholesterol accumulates on nerve cells and triggers an immune response, leading to scarring of the cells. Men and women metabolise fats differently, which could account for the higher prevalence of MS in women.

It's an interesting theory, but obviously needs much research done to see if it holds water. Watch this space..

I've talked about vitamin D several times before: there's a lot of research going on in the field, and there seem to be many links between vitamin D and MS. Vitamin D is created in the body following exposure to sunlight, so people tend to be more at risk of deficiencies the further they are from the equator.

An international group of researchers are now suggesting that vitamin D should be added to foods like milk and fruit juice in Scotland, which has some of the highest levels of MS in the world. The Scottish Parliament is unconvinced. Food supplementation already exists: iodine is added to table salt to protect against goitre. Should vitamin D be added to the list?

As many of us know all too well, MS can be difficult and time-consuming to diagnose. This can cause distressing uncertainty, as well as delays in commencing treatments. Israeli researchers have developed an electronic "nose" which can diagnose MS, as well as some cancers, from a person's breath. They identified organic compounds in the breath that are a sign of MS, then produced sensors to detect them. They hope that their device will allow MS to be diagnosed at an early stage and without using invasive techniques like lumbar punctures. Still early stages for this research, but a very exciting development!

On to treatments. At least 80% of people using interferon-b eventually develop antibodies to it, meaning treatment has to be stopped. Instead, German researchers tried injecting mice with an MS-like disease with a type of RNA which stimulates the body to produce its own interferon-b. The results were excellent. This could prove to be an excellent way round the antibody problem.

As people with MS age, the rate of remyelination of nerve fibres slows, resulting in the loss of more nerves. A research group in the UK have managed to reverse this decline in mice by exposing them to stem cells from young mice. Stem cells show great promise in remyelination, and this is a great discovery.

Finally, research on treatments for MS symptoms.

The MS International Federation have released the results of a survey on fatigue. 86% of those who responded said that fatigue was one of their main symptoms, and 46% that fatigue has a high impact on their lives. For those of us with MS fatigue, this will come as little surprise. Interesting data, showing how important it is for healthcare providers to recognise the problem of fatigue. Important to remember, though, that those who responded had chosen to participate in a survey on fatigue, and might therefore be those for whom it's an important consideration. People unaffected by fatigue might not have been interested in participating.

An Israeli research group did a trial involving three groups of patients. One group received electrical stimulation of the left prefrontal cortex, one of the motor cortex, and the final, control, group received a sham stimulation. After 18 treatments, the group receiving stimulation in the motor cortex had less fatigue and less depression. There was a tendency towards less fatigue in the prefrontal cortex group. The control group had no signnificant improvement. Further research is planned to investigate the effect of the stimulation on metabolic and neural activity.

Many of us with MS also experience cognitive problems - short term memory loss, lack of concentration, and so on. Italian researchers used computer-based rehabilitation programmes to help with attention and information processing. One programme, for instance, is a train driving simulation: you have to observe the control panel of the train and the surrounding countryside while encountering increasingly difficult distractions. After a 12-week programme of treatment, patients had improved attention and information processing skills, although no changes were seen on MRI. It seems training can help, but it's no cure.

I hope you agree that there were some really promising bits of research this time. Let's see what happens next!

Back on the chain gang: the WRAG and #workfare

There's been a lot of indignation on the internet this week.It was partly down to an error by Tesco, who advertised a "work experience" job as if it was a normal vacancy, but paying only Jobseeker's Allowance plus expenses. I have no doubt that their advertising mistake was genuine, but it highlighted the practice of big companies increasing their already huge profits by using taxpayer-funded labour.

This type of social welfare system is known as workfare. Under the system that previously operated in the UK, receiving benefits was conditional on things like searching for work and being available for work. Under workfare, you are expected to undertake training, work experience or community work. If you do not complete these satisfactorily, your benefits are reduced.

Workfare became a political headline-grabber in the UK about a month ago, after geology graduate Cait Reilly refused to take up a placement at Poundland, because it was unpaid: she argues that young people need jobs, not fake "work experience" schemes.

Now, the latest. The Guardian has received documents revealing secret DWP plans. If you're on Employment and Support Allowance (ESA), in the Work Related Activity Group (WRAG), it's been decided that you might be able to work at some time in the future. The documents reveal that those in the WRAG, too, may be placed on workfare, even though it's acknowledged that at that point in time they are not fit for work. For some of us, fitness to work may be years or decades away, while others of us will never be fit for work.

So, will we be forced out to work when we're not fit? Forced back to the chain gang?

Well, many issues have been raised about the policy since the Guardian's story. Here are a few thoughts of my own.I'll talk about "I", though I've not been transferred onto ESA yet.

• Suppose I agree to take part in a workfare scheme. What happens if (when) I'm not well enough to go? What happens if I arrive late, or have to leave early, due to my disability? Or have a medical appointment? After all, the DWP have acknowledged I'm sick and/or disabled by putting me in the WRAG in the first place.
• My doctors may have said it would be dangerous to my health to work. Where do I stand? (Or, more probably, sit)
• According to the Guardian documents, the "host employers" have to make "reasonable adjustments", as with the Disability Discrimination Act. Is this really likely if I'm only there for a few weeks? Funding under Access to Work is no longer available, having been withdrawn by this government.
• The Health & Safety at Work Act is still in force, and protects me, all other employees, and any members of the public visiting the workplace. Could be expensive for the "host employer" if anything goes wrong.
• The Employers' Liability Act also applies. As long as I'm certified as "not fit for work" by my doctor, I will not be covered by an employer's insurance.

At the time of writing, several large companies have dropped out of the workfare scheme for people on JSA, including Waterstones, Sainsbury's, TK Maxx, and Matalan. Hopefully workfare for people in the WRAG will be quietly dropped before the government shows itself up yet again.