Tuesday, 7 September 2010

First brick out of the Wall of Silence?

This morning, the UK woke up to actually hearing sense talked about ME on national radio and the BBC News site.(I've posted the full article below, as links have been a little hinky recently.)

A link-heavy and very helpful account of this research can be found here on the ME Research UK site.

A team from Dundee University lead by Professor Jill Belch has found clear abnormalities in the white blood cells of children with ME - and is saying so loud and clear.  And being allowed to do so by national press!  These reports were clearly not filtered through the Science Media Centre - I suspect the SMC have lost all credibility on the subject on ME after their recent clumsy attempt to kill news coverage of the Lo/Alter paper.

How encouraging it is to read on the BBC site that the study has found 'further evidence that ME...could be caused by a virus' (my emphasis). As in, this is the generally accepted position (except by certain flatearth-ing psychologists!) and we are now watching more evidence appear and moving onto 'how can it help devise treatments?'

As a friend pointed out when she sent me the link, the reporter introduces the subject of the study, and of ME itself, in such a sensible and matter-of-fact way that when it is later mentioned that some have said ME is a mental disorder, a reader will think 'how ridiculous'. Quite. Only those with vested interests or the delusional think (or claim to think) that ME can possibly be a mental condition these days.

You can listen to Professor Jill Belch being interviewed on this morning's 'Today Programme' on BBC radio.


Perhaps in the light of these results, the NHS and University of Bristol might like to call a halt to their plans to test the Lightning Process on children as young as eight which has been so strongly condemned by patient advocate groups.

How depressing that in Scotland we have this marvelous, serious research going on, and in England we have this sick joke of a study, based on the vastly outdated assertion that ME is all in the mind and can be effectively treated or even 'cured' by altering the way you think. Thanks a bunch for making English science a laughing stock, guys. Please read the reports from Scotland, and ask yourselves what the hell you think you are doing.

I have blogged before about the horrible situation in which children with ME and their parents find themselves - how a nightmare of disbelief and the threat to split up families is cruelly and unnecessarily added to the horrible burden of the disease.  It's time - and more than time - for this cruelty to stop. Anyone in any doubt of that should read the Dundee reports and then the speech made by TYMES Trust's Young Advocate in 2009. No child should ever have to say, as the Young Advocate does "I’m used to pain. I’m used to rejection. I expect nothing from the professionals." Not in our 'civilised' society. No parent should be threatened with the loss of their child when they insist said child is ill not crazy as happened with both Sophia Mirza and Ean Proctor. Not in any society we are proud to live in.

Article from the BBC News site:

Jozef MackieJozef Mackie was diagnosed with ME when he was 11 after being labelled a "school refuser"
A study on children has found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus.
Scientists at the University of Dundee study found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection.
ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS), causes debilitating tiredness.
About 150,000 people in the UK have ME/CFS, 15,000 of whom are children.
The condition is characterised by physical and mental exhaustion following normal activities. Symptoms can include muscle pain, sore throat, tender lymph nodes, multi-joint pain and headaches.

Related stories

In the study, funded by ME Research UK and The Young ME Sufferers (Tymes) Trust, 25 children aged between seven and 14 with ME/CFS were assessed, along with 23 children of a similar age in a control group.
The report, published in the Archives of Paediatrics and Adolescent Medicine, said abnormalities were found in the blood of all the children with ME/CFS.
The results were similar to those previously identified in adults with the condition.
Samples taken from youngsters with ME/CFS contained higher than normal levels of free radicals - molecules that can damage cells, tissues and organs.
Virus debate
A much greater number of neutrophils, the most common type of white blood cells, were also found to be at the end of their lifecycle.
The report said the high turnover of neutrophils indicated the body's need to fight infection.

Start Quote

Professor Jill Belch
It's also important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body”
Professor Jill BelchNinewells Hospital, Dundee
There is a continuing debate among scientists over whether ME/CFS is caused by a virus.
Several studies in adults have found evidence of a virus in people with the condition, but so far research has not proved conclusive.
Some doctors have said that the idea that different types of chronic fatigue are all caused by a single virus is not plausible.
Professor Jill Belch, an expert in vascular medicine at Ninewells hospital in Dundee who led the latest research project, said: "What we've found are blood changes that suggest chronic inflammation.
"This is important because it's showing an abnormality that we might be able to devise a treatment for, but it's also important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."
Dr Neil Abbot, of ME Research UK, said it was " fascinating to discover evidence of a persistent or reactivating viral infection".
"Although the cause of ME is unknown, more than half of all patients say their illness started with an infection," he said.
"The study undoubtedly adds greater scientific weight to the existence of a condition which, sadly, many still fail to acknowledge in spite of its severity."
According to Tymes Trust, children with ME can be treated with "scepticism" by the healthcare system.
'School refuser'
Jozef Mackie, 14, from Fortrose, near Inverness, was a sporty child who loved skiing, until the symptoms of ME began when he was nine years old.
His mother, Donna, said: "He was the boy whose battery wasn't working very well. He had to take more and more time off school.
"The other children were able to run around and do things after school and Joseph had to come home and lie on the settee."
For two years Jozef was labelled a "school refuser" and told it was "all in his head".
He was finally diagnosed with ME when he was 11.
"I haven't been treated very well," said Jozef. "I haven't been believed. They just think I'm putting it on.
"It's sore to get in and out of the car and I can't walk long distances."
Jane Colby, from Tymes Trust, added: "The medical profession must now take the consequences of ME in children seriously, and research into prevention and treatment must be given a high priority."


  1. It is. But it does make one feel very odd when such bad news is good news (if you see what I mean).