From BBC News, 1 November 2016. Story by James Gallagher, health and science reporter, BBC News website.
A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use.
The disease affects one in 50 children, leading to mental health problems and missing school.
“If anyone has done a cross-country [run] or a marathon – that is how it feels all the time,” said Jessica, 14.
The trial, on 734 children, will use intensive online therapy sessions to adjust sleeping habits and activity levels.
It also uses a form of behavioural therapy to help children with the disease adapt the way they live.
Studies suggest one in 100 children misses at least a day of class a week because of the disease.
When Jessica – not her real name – was 10, she missed the equivalent of a whole term in one school year.
She was diagnosed with chronic fatigue syndrome (CFS) – also known as myalgic encephalomyelitis (ME) – at the age of 11.
“I can't do the things my friends can do,” she told the BBC News website.
“I've missed a lot of birthdays.
“When they have sleepovers, I have to sacrifice that.
“And I can only do mornings at school, so I miss a lot of lessons.”
Prof Esther Crawley, a children's doctor and from the University of Bristol, said: “This illness is devastating. About 50% of teenagers are tired, but these children are different – they stop doing the stuff they want to do.
“The first thing they drop is socialising and fun things, then they drop school, so this is very different to teenagers just being tired.”
Jessica's mother said: “It has been hell, it has been depressing.
“I have lost friends, she has lost friends.
“She loves Florence and the Machine and her best friends went [to watch the band play live], it is isolating because her friends were doing what her mind wants to do but her body cannot.”
Prof Crawley is leading the FITNET-NHS trial, to see if online consultations work and are cost-effective for the health service.
It is being funded by the research wing of the NHS in England, but when the results are out all the devolved health services would then decide whether they wanted to introduce it.
Trials of the scheme in the Netherlands showed 63% of the patients given therapy had no symptoms after six months, whereas just 8% recovered without it.
The scheme offers behavioural therapy sessions to change the way children think of the disease and aims to reduce the time spent sleeping and sometimes cut activity levels.
The approach regularly receives criticism from some activists who argue it treats chronic fatigue syndrome as a disease of the mind.
Prof Crawley said: “A teenager might say, ‘You are just trying to change my sleep', but do you know how much biology you actually change?
“Children who come to my clinic have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible; by changing their sleep, we reverse that.
“The stuff we are doing is not a pill, but it might as well be.”
Lizzie Horgan, 26, from Hertfordshire, is just getting back to work after being hit with chronic fatigue syndrome in 2015.
“One evening I came home feeling really unwell and passed out, I had no control over my body.
“I was initially really reluctant to take up the offer of cognitive behavioural therapy, as I assumed it was for something psychological, but actually it really helped me understand what was happening to my body.
“So I think the trial is really cool and really exciting.”
The results of the study should be known in 2022.
Mary-Jane Willows, from the Association of Young People with ME, told the BBC: “It is a scandal, what other condition would you leave a child with – undiagnosed and untreated?
“And the trouble is the longer they are left, the more ill they become.
“This trial is hugely important, every day we are phoned by parents who are desperate to get treatment for their children.”
Prof Stephen Holgate, from the Medical Research Council, said: “CFS/ME is an important disabling condition.
“It has been chronically underfunded for years; patients deserve high-quality research like this.”
“Prof Stephen Holgate, from the Medical Research Council, said: “CFS/ME is an important disabling condition.
“It has been chronically underfunded for years; patients deserve high-quality research like this.”
Yes we deserve high quality research – but not like this!! I don’t believe in mind over matter. (Oops! I obviously need CBT to treat my aberrant beliefs about pscho-twaddle.)
And how exactly does this ‘new’ treatment fix or cure the proven cfs/me blood signature? Does it cure the blood signature for things like cancer and his? No? It doesn’t? In fact it does NOT and cannot treat/cure any physical condition. This is a scam, designed to fool people into uptake of false hope meanwhile it does nothing but provide funding to those who utilise naivety to scare people. Cfs/me does NOT cause mental health issues, this is prejudice, discrimination and instigation of hate crime at its worst… And the tax payer is paying for this.
To use children and their parents in this fashion is absolutely disgusting.
Reading this article I just feel overwhelming sadness that this disease is being trivialised yet again and that Esther has repeated derogatory statements about the ME patient community that have been found to be exaggerated / dishonest in the recent PACE Tribunal.
The media coverage is so huge for a project that has not even started and is so banal. While at the same time the UK media continues to ignore real biomedical science from abroad from some of the most renowned researchers in the world.
63% recovered in the Netherlands is an unbelievable number similar in scale to the false claims made for the PACE trial. But the Netherlands are strong advocates of the Psycho-social Behavioural model for ME/CFS so this result is not surprising.
My own three children fell ill with severe ME in the eighties they could not speak answer a simple question or write their own names and addresses let alone go on computer to do any of the proposed “treatment” The Fitnet “treatment” contains all the elements that are so arduous and sick making for ME patients such as judgement & concentration. Far from making anyone better it sounds like something calculated to make patients worse. (Those in the Fitnet group, and their parents, will get information but be asked to work through 19 interactive online CBT modules. The children will be asked to answer questions and write diaries. They will have a weekly online appointment with their therapist who will review their progress and give advice.)
I don’t have any issue with people trying CBT to help them cope if they wish to but this kind of all or nothing aggressive promotion that seeks to undermine the ME community at the same time is really incredibly cruel, reprehensible and unethical.
It was a particular heart sink moment to read in the BBC article that Stephen Holgate considered this “a high quality study”. What hope is there for the future of my now grown up children and all the other children past, present and future who’s severe biological illness is undermined and denied by the propagation of junk science from the British Psychiatric School of thought and the UK media.
Good comment, Mayfly. It really is a heartsink moment.
You said:
“63% recovered in the Netherlands is an unbelievable number similar in scale to the false claims made for the PACE trial. But the Netherlands are strong advocates of the Psycho-social Behavioural model for ME/CFS so this result is not surprising”
As Tom Kindlon points out, even the Dutch researchers own figures actually undermine this claim of 63%:
“Three of the four thresholds used by Sanne Nijhof and colleagues (April 14, p 1412)1 for their post-hoc definition of recovery from chronic fatigue syndrome are virtually the same as the entry criteria. For example, 40 or more on the fatigue severity subscale of the checklist individual strength 20 (CIS-20) was equivalent to “severe fatigue” at baseline, yet once a participant scored less than 40 (the mean +2 SDs for a healthy population) they could be counted as recovered! The face validity of their other post-hoc recovery definition, listed in the appendix, seems stronger, but it gives a much lower figure for recovery of 36% (rather than 63%).
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61324-5/fulltext
Yet as always, the spin wins while the real research gets studiously ignored by those with power and influence.
“UK forms global infection response team” reported ten minutes after the news celebrates CBT as a cure for ME. What an odd world we live in when a disease affecting millions is consistently minimised by healthy journalists and only diseases caught offshore are worthy of funded research.
Meanwhile, we continue to buy raffle tickets and the spare coins we have to help fund research.
There has never been a point in the thirty years I have had this condition that I have felt any media outlet truly believes ME is an illness which devastates lives, families and the wealth of the country. Well done that lobbyist for getting that story out compared to Tom Hunts 38 marathons in 31 days across September 2016. A World record the BBC could not be bothered to include in any format…why?
Initial thoughts: – All the reports and comments talk of “treatment”; the GMC wrote to us that they, and NICE, view that there is no treatment, only “management”, that the use of such terms including saying to children “get you better” is unfortunate, and unhelpful of doctors.
– Low cortisol in the morning – anyone know of the research in children with this? and if it is low, how to boost this?
– saddened to read of need for such a large sum, £million, to do this, especially if diverted from biomedical research funds.
– the format sounds the same as you receive if you’re a ypwme patient with the this team, but with the appointments on-line (which saves the energy capacity getting to the hospital or outreach base). BUT our ypwme (for 8 yrs, & was once with this team) says it sounds like they’re paying Skype co. overly huge sum just for this set up.
How can this research project cost so much?
– I understand a few years ago a research psychologist from the Netherlands joined the Bristol team, so I guess there’s a link of experience for this work.
– why are children/ypwme going into school in the mornings? when it’s the worse time. Our ypwme, (& many we know of via linked sources) have found attending one class in afternoons more workable, only after long periods of time studying (and achieving) at home in 20 minutes a day segments.
– home educated children/yp do catch viruses… leading to ME; home education is a legal choice. Studies appear to ignore this group when promoting their research and targets.
– ypwme can improve their health, and achieve, via the home education route.
Info: Radio 4 Today programme (01/11/16) has presented details throughout the programme and interview with E.C.
The following is a succinct and brilliant account of the spin surrounding all this, and moreover, one of the comments at the end states:
“To add to the extensive web of dots being joined, the BBC’s Health editor who wrote the BBC News online article is on the advisory board of……the Science Media Centre. How on earth can he be allowed to do that?”
https://uttingwolffspouts.com/2016/11/01/pace-part-ii-esther-crawley-and-fitnet/
Many thanks to i News for some sensible reporting:
https://inews.co.uk/opinion/comment/cbt-wont-cure-my-chronic-fatigue-me-any-more-than-it-would-cancer-its-a-physical-illness/