Dr Ros Vallings, President of ANZMES (Associated New Zealand Myalgic Encephalopathy Societies), spoke recently at a public meeting in Wellington. Those attending, who included members of the public as well as members of our ME Support Group, generously donated enough funds to pay for the venue and some of the publicity.
“Many came up to me at the end and said they enjoyed Ros’ plain speaking, common sense approach, and most found her content new and interesting,” said Martin Buck, who organised the meeting on behalf of the group. “A lot of questions were asked, and most people came away feeling they had learned a lot, including very good information on management, diet, supplements, medication and cell biology, but within our grasp.”
Dr Vallings’ talk was taped and copies are available on loan from our library (details on the back page). The following are only some of the points she made.
She explained the reason behind international moves to try to decide on a new name for the illness. This was because the “encephalomyelitis” part of ME was not accurate, as it refers to inflammation of the brain. She described the term CFS as a putdown which doesn’t accurately describe the symptoms and she hopes that the new name, Myalgic Encephalopathy, will stick. ANZMES has already changed and it has been accepted in Britain and Canada.
Dr Vallings pointed out that ME is really an umbrella term, that probably everyone in the room could report a different set of symptoms and that with some people the cause may be so long ago that they don’t remember what it was. She said that what happens is that an acute episode such as an infection like glandular fever causes the immune system to fire into action, creating chemicals in the system which cause the symptoms.
After an infection like glandular fever, 90 precent of people will recover within a month and the immune system will settle down. A further nine percent will take about six months, but in about one percent it will be more prolonged and could take as long as 10-15 years or even longer, with relapses occurring in a wavelike pattern, caused by episodes of stress. This need not be emotional stress it could also for instance be toxic exposure, the use of anaesthetics or too much sporting activity too soon.
The good news is that once a person is fully recovered there is no deterioration (as there is in illnesses such as MS) even after many years. The majority of people recover in from six months to two years and the younger they are the better and also the earlier they are diagnosed the better. The recently issued UK guidelines describe two phases of illness, up to six months being described as “acute” and after six months as “chronic”, so it’s best to treat it early and doctors now have clear guidelines to follow. What is abnormal about ME is that someone is obviously ill but all routine tests are normal.
Dr Vallings spoke about some progress with research, which still focuses more on cause than on how to treat ME. This is because until they understand it, they won’t know how to treat it, and this applies to any illness. She reported on the conference in Sydney where various pockets of research came together, giving a better understanding of the illness.
The majority of ME sufferers, she said, have low blood pressure, with the volume of blood circulating in the body up to 30 percent less than normal, so that there is less oxygen getting to the brain and extremities. This is what causes an unpleasant reaction on standing up. People may also experience small changes which may cause them to think the heart is affected, but agin this is not permanent. Even if people quite high blood pressure it may drop when standing up, but this is less common in the about 10 percent of ME sufferers who don’t have low blood pressure.
Dr Vallings said that there is now a more settled consensus around the world regarding general management of the illness. She stressed that she was referring to management, not a magic cure. “People who say can cure you probably want your money,” she said. There was an emphasis on educating as many people as possible in the support network.
She mentioned the importance of taking a little exercise, so that muscles don’t get too weak which will be especially important after recovery and because it also helps brain power. Her advice was to avoid reaching the stage of a racing pulse, sweating, panting, muscle pain and excessive fatigue, symptoms that may not in fact occur until the following day. It was important to gradually learn what can manage within that framework, and to do a little exercise on most days rather than “crash and burn”. It was also important to rest and recuperate after exercise.
Good nutrition was important, with a well balanced diet, keeping fat down and reducing alcohol and caffeine to a sensible level, because most ME suffers don’t tolerate alcohol well and caffeine affects sleep patterns. Vitamins and minerals are more readily absorbed from food, because when we see an attractive meal we start salivating and so start the process of breaking down food, whereas pills and capsules don’t have this effect. Potassium requirements, for instance , can be obtained from three bananas or kiwifruit a week.
Salt intake should be increased in order to increase blood volume, “just very, very plain salt, the cheapest available”, with no additives such as minerals, because ME sufferers are sensitive and are vulnerable to excesses of anything. In cases of high blood pressure the increase in salt should be minimal and it was important to get monitored. Along with increased slat intake, it was important to have plenty of fluids, “as much as you want then double it”.
It was important, Dr Vallings said, to be careful with supplements, adding only one at a time. Mixtures found on shop shelves may be harmful, because of sensitivity to some substances. The use of supplements needed to be tailored to individual needs and it was important to keep one’s doctor informed of what one was taking.
Some people may need added calcium and some may benefit from oils such as evening primrose or flax one or another but never both. Some people benefit from a regular course of vitamin B12, but it must be injected and accompanied by a folic acid supplement. The use of oestrogen for women or testosterone for men can be beneficial and may help with sleep problems ME sufferers often don’t get enough of the right kind of sleep. In spite of recent publicity, the comparatively low risk of taking these supplements is outweighed by the benefit gained.