Worldwide survey seeks MS answers

Women are twice as likely as men to develop MS

A major new study that hopes to answer key questions about the neurological disease multiple sclerosis (MS) is being unveiled on Thursday.

This first worldwide study is the work of the WHO and the Multiple Sclerosis International Federation (MSIF).

It remains unclear what causes MS but the study says there may be many more sufferers than the estimated 1.3m.

Survey organizers urge governments to invest more in education and services to improve sufferers’ quality of life.

Specialist equipment

MS is a degenerative disease of the central nervous system. It typically emerges in young adults and can lead to severe disability.

Symptoms often include aching, loss of balance, muscle spasm and paralysis and general fatigue.

But there are still many mysteries surrounding MS.

It is not clear what causes it or why women are twice as likely as men to develop it. Or why it is so much more common in colder countries than warmer ones.

There must be many people out there who we just don’t know about Peer Baneke, MSIF

The study has found that although most cases occur in the developed world, every country that took part in the survey, rich or poor, had some instances.

Peer Baneke, the chief executive of the MSIF, says the rough estimate of 1.3m cases worldwide is probably a big underestimation.

“The diagnosis of multiple sclerosis is very difficult,” he said. “You really need neurologists who have the knowledge to distinguish it from other things.”

It also needs specialist equipment which poorer health systems simply cannot access. MRI scanners, for example, are in short supply in the developing world.

“There must be many people out there who we just don’t know about,” said Mr Baneke.

Stigma

The survey also looks at the experiences of people with MS. In many countries, they face stigma and misunderstanding.

Kanya Puspokusumo, a 36-year-old Indonesian, was diagnosed in 2001.

She said that some people thought MS was similar to Aids. Even though she explained it was not transmitted from one person to another, many still excluded her socially.

Dr Hithaishi Weerakoon is a doctor in Sri Lanka who was diagnosed with MS more than a decade ago.

Many families do not acknowledge MS, she says, and keep affected family members hidden away.

Others say, wrongly, that it has developed as a condition because of sins in a past life.

Those associated with the study say this is an important start – but that far more research needs to be done, especially in developing countries where the process of identifying cases systematically and collecting data is still at a very early stage.

Hope for end to rejection drugs

At present patients must take powerful drugs

Scientists have developed a procedure which may help end the  need for transplant patients to rely on powerful anti-rejection drugs.

The complex procedure involves mixing the patient’s infection-fighting white blood cells with cells from the donor.

One patient went eight months without immunosuppressive drugs and others were switched to low doses.

The study, by Germany’s University of Schleswig-Holstein, appears in Transplant International.

It could eventually offer patients who have had transplant surgery a much higher quality of life, free from complex drug regimes Dr James Hutchinson University of Schleswig-Holstein

Currently, transplant patients must take a cocktail of powerful drugs for life to dampen down their immune system, and prevent the new organ being rejected.

But the drugs themselves can cause side effects, and may not prevent the slow rejection of the organ over time.

The new technique involves giving transplant patients an infusion of specialised cells known as a transplant acceptance-inducing cells (TAICs).

The TAICs are created by isolating a type of white blood cell from the donor, and modifying them chemically in the lab.

Once modified, the cells gain the ability to kill off cells in the immune system which trigger the rejection process, and to boost the action of another type of immune cell which plays a beneficial role in guarding against rejection.

The cells are then cultured alongside those from the recipient – which helps prime the immune system further – before being injected into the patient.

The technique has been tested on kidney transplant patients, some of whom were given the cells before surgery, and others after the transplant, as an additional drug therapy.

Preliminary, but promising

Lead researcher Dr James Hutchinson said the technique was still at a preliminary stage, but results on 17 patients were promising.

He said: “It could eventually offer patients who have had transplant surgery a much higher quality of life, free from complex drug regimes.”

In the first stage of the clinical trials 12 patients received kidneys from deceased donors, and were given TAICs in addition to traditional anti-rejection drugs.

Ten patients were gradually weaned off the cocktail of conventional drugs, and six eventually took only a low dose of one particular drug, cutting the risk of side effects substantially.

In the second stage of the trial five patients who received kidneys from live donors were given an infusion of TAICs before their surgery was carried out.

One patient was able to go eight months without any immunosuppression drugs, and a further three were successfully weaned down to the single low-dose therapy.

Dr Hutchinson said: “Our research clearly shows that infusing TAICs into patients before they have a kidney transplant, or after the procedure has been carried out, is a practical and safe clinical option.

“Although this procedure is still being developed and refined, it poses an exciting possibility for clinicians and patients alike.”

Keith Rigg, a transplant expert and vice president of the British Transplantation Society, said: “This is interesting work which has the potential to both reduce the risk of rejection after organ transplantation and the amount of anti-rejection drugs that are required, both of which will be good news for patients.

“As the authors say this is still early and preliminary work, and further development and refinement of the process is required, but this procedure does seem to have potential.

“Further developments will be watched with interest.”