Dr Jane Collins at Great Ormond Street Hospital
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Chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), can affect children and young people as well as adults. It’s more common than you might think.
Between two and six per 1,000 young people suffer from the condition and it‘s probably the most common medical reason for absence from school.
CFS/ME can be debilitating. Extreme tiredness, sleep problems, nausea, dizziness, headaches and joint pain are just a few of the symptoms, and the impact on a young person’s life can be devastating. Those affected may be unable to go to school, lose contact with peers, and become generally less able to be involved in their usual activities.
WHAT IS IT?
What is CFS/ME? It is significant tirednesss which is severe enough to restrict usual everyday activities, and has been present for at least three months. It doesn't go away with rest or sleep, and usually affects every aspect of a person's every day life.
Other symptoms include muscle and joint pain, headaches, nausea and dizziness. Sufferers often sleep erratically. Finding it difficult to concentrate, being forgetful and experiencing mood changes are also common symptoms.
Why does it happen? Unfortunately we don’t know what causes it, although there are several theories. The condition is typically triggered by a viral infection from which the young person does not recover in the usual way. By the time the condition is diagnosed, there is usually no evidence of the triggering illness. Some affected children and young people seem to have subtle abnormalities of the immune system and others may be more allergic than the general population. Yet only a few seem to be helped by allergy treatments.
What we do know is that looking for a cause - once all the appropriate medical tests have ruled out other possible reasons for tiredness - is not useful. While there isn't a cure for CFS/ME, we are beginning to understand more about this complex condition and there are a range of tried and tested treatments that can help.
When should I seek medical attention? It's a good idea to see your GP if the symptoms continue for more than three months. Your child may be referred to a paediatrician at this stage.
How is it diagnosed? There is no definitive test that diagnoses CFS/ME. Routine tests, including blood tests, are carried out to exclude any other possible causes of the tiredness. This is usually the first step. Many medical conditions can cause fatigue, for example glandular fever or thyroid hormone deficiency. It is important to exclude these, as they need specific treatment. Your GP will want to know if there have been any recent infections.
A diagnosis of CFS/ME is usually made by a process of elimination and by taking a careful history including medical, school, social, activity and family history with all test results negative.
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This is a puerile article. It trivialises what can be a devastating illness. My son is now 23 and has been bedbound for 6 years with a range of horrible symptoms. M.E. has destroyed all our lives.
Paul Brown, Newcastle upon Tyne,
I found the book "Overcoming Chronic Fatigue" by M. Burgess very helpful in understanding CF and learning how to manage it. Weekly Shiatsu (2 years) helped me tremendously - huge change in my quality of life.
Hannah, Zurich,
Hear Hear, Simon I agree.
Theresa, Norwich, UK
I can understand that this feature has a standard, fairly brief format, but it does over-simplify (and gloss over) what is a very complicated and destructive illness.
I was taken ill in 2004 aged 14, having previously been an extremely robust, healthy and sporty child. I was lucky enough to be referred to Dr Dowsett (cited in Jane's comment above). Thanks to her good advice I have improved to the point of considering myself to be back to full health - I am now 28 - although progress tended to be two steps forward, one step back.
I'm not sure if it's accurate to say there are only tests to eliminate other possible causes of tiredness - aged 21 I was taken to hospital with suspected meningitis, and given a lumbar puncture. The nurse asked me if I knew I had ME (!) because apparently they can tell by the results of the lumbar puncture...?
Rebecca Winward, Colchester,
we have 2 children with m.e 13yr old(ill for nearly 5 yrs) and 9yr old(ill for 1 year). the key for our eldests improvement is to of taken her out of the school system all together 9mths ago and have private tutors at home(all be it a very limited amount). she has got life back into her now, and is enthusiastic about learning again, we are pacing her OUR WAY now! we will not make the same mistakes with our 2nd child, and after primary school days are over, will definately home educate him(secondary school is a complete nightmare with m.e). children need to be able to have some sort of life outside education. we are ever optimistic about recovery, but are also realists about m.e now, just learn learn learn as much as you can about the illness, and ALWAYS trust your own instints as far as your childrens future is concerned. good luck.
sharon cox, ware herts, uk
Yes, Myalgic Encephalomyelitis can be devastating, but it is far more destructive than is portrayed in this news item
This is especially more so, after using the types of 'therapy' that are mentioned i.e. CBT and GET. Many people with pure ME become much worse and this has been show in patient feedback as well as in research
The truth about this disease is being suppressed by certain parts of the medical profession, as is the need for biomedical research into the illness
We especially need to look at the affect of viruses and how they damage the brain processes and central nervous system
A minority of people do make a complete recovery, but most do not and a significant number go on to become severely affected i.e. house and/or bed bound and even die
This disease is on the increase, so we need to invest in finding the cause, not trying to put a sticking plaster over the problem and hoping it will just disappear!!
Simon Lawrence, Ayrshire,
I am appalled at what I read in your piece "What is chronic fatigue syndrome or ME?" To say that "looking for a cause ... is not useful" as Dr Jane Collins and Anna Gregorowski do, is reprehensible. Ten years ago I co-authored with Dr Elizabeth Dowsett the study which showed that CFS/ME was the largest cause of long term sickness absence from school. The previous year, my book ME - THE NEW PLAGUE caused controversy by investigating the links with poliomyelitis and the enterovirus family. Now a new study in the Journal of Clinical Pathology by Dr John Chia has shown that my book was correct. Before Dr Chia's study came out I was writing a new edition of the book, as it had sold out. It looks as if that was a timely decision. We must never, ever, dismiss physical illness without proper investigation. In my voluntary work as Executive Director of The Young ME Sufferers Trust I see all too often what comes of that fatally flawed idea.
Jane Colby, Stock, Essex
I think it'd be better to use the word improve and remission rather than recovery as sometimes symptoms can come back which is terrible if you think you've recovered. The paediatrician Dr Bell says that as people improve, they tend to be able to do more rather than as they do more, they recover. Many children with ME once diagnosed will naturally improve.
5 Rehab clinics were set up in Belgium for adults using GET and CBT. The results were very underwhelming to say the least - see http://tinyurl.com/2tj42o (it's in French unfortunately). They found amongst other things that rather than helping people to work, the people at the end of the rehab programs were, on average working, less! (see tables 68-69). The effect on exercise capacity was also underwhelming.
Personally I went from having mild ME to severe and chronic ME because of advice to exercise from physios, etc. I'd urge people to be very careful about exercise and listen to your body. It'll tell you what you need to know
Tom Kindlon, Dublin, Ireland