Lightning Process to be Evaluated in Research Study on Children

[Dx Revision Watch]

Crawley on sleep and activity management, crit of Bath CFS service

Until the FOI comes back, it's not clear what they intend to do with these children during the pilot.

The fact that two LP coaches are involved and a primary outcome measure of school attendance after six months suggests they intend to do more than just "in depth interviews" with children and parents.*

*Press Release issued 3 March 2010


But the AYME Link material says: (my emphasis)

[...]

Dr Crawley told CHEERS: "There is so much research in lots of different areas. Research on treatment is important. At the moment, we are not comparing treatments but seeing if we can recruit into a trial to see if we could investigate treatments in the future.

"Lots of people are using LP. It's important to know whether it is helping or not. It is also important to know if there are significant side effects."

Dr Crawley added: "As well as all of this, we will also use this study to start looking at which outcomes are the best for children. At the moment, no research has looked at those and it is important to find out from young people how best to measure outcome."

Dr Crawley's Bath CFS service for children and young people uses a "traffic light" card system for managing activity. What treatments/interventions would be available under "specialist care" is included in the revised FOI that I submitted to U of Bristol, on Sunday.

I've been puzzled that if the pilot isn't going to be "comparing treatments" but "seeing if we can recruit into a trial to see if we could investigate treatments in the future" how the outcome measure of school attendance after six months fits, if they are not going to be applying LP in some form and comparing with "specialist care".

A health service researcher has suggested to me that the pilot may intend to evaluate LP without a control treatment group - a before and after comparison of the same patients. If there is an effect, then they may apply for an RCT, presumably using "specialist care" as the comparison group.

I had assumed 90 participants split between two groups - one receiving "specialist care" as the comparison, the other receiving some form of LP, but the suggestion above is a better fit given what has been said so far in relation to the study design.

This Facebook group Children with CFS/ME has a Wall posting on

April 20 at 3:37pm

and several comments about families' experiences of Dr Crawley's CFS service:

http://www.facebook.com/?ref=home#!/group.php?gid=300490079720&v=wall



In November 2007, as part of a week of ME focussed broadcasts, Dr Crawley took part in this Case Notes programme, presented by Dr Mark Porter. In these extracts from the official BBC transcript, Dr Crawley is talking about managing sleep and activity management and explains the "traffic light" card system the clinic uses, but please refer to the site for the full transcript. I also have this programme as audio. I don't think she used the term "sleep hygiene" which is a term I really dislike for several reasons and it also puts me in mind of grubby pyjamas.

http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml

BRITISH BROADCASTING CORPORATION

RADIO SCIENCE UNIT

CASE NOTES

Programme no: 10 - ME

RADIO 4

TUESDAY 06/11/07 2100-2130

PRESENTER:

MARK PORTER

REPORTER: ANNA LACEY

CONTRIBUTORS:

ESTHER CRAWLEY

ANNA GREGOROWSKI

ANNA HUTCHINSON

PRODUCER:

PAULA MCGRATH

NOT CHECKED AS BROADCAST

[...]

To find out more about the condition, and its management in today's NHS, I travelled to The Royal National Hospital for Rheumatic Diseases in Bath to spend a day with Dr Esther Crawley - the only paediatrician in the country who specialises in CFS/ME.

CRAWLEY

Yeah there's lots of names for chronic fatigue syndrome and the patient group usually call it ME or myalgic encephalitis or myalgic encephalopathy and that is because that actually described their symptoms, so muscle aches and pains and cognitive or thinking problems. In fact doctors don't like that because when you actually look there's no evidence of muscle inflammation. And so doctors decided to call it chronic, which means long term, fatigue and syndrome, which means a collection of symptoms. Patients didn't like that, so we're now ended up with CFS/ME is the actual official terminology.

[...]

CRAWLEY

The most recent study in America shows that it probably affects about 2% of the adult population. Studies in children suggests that it affects between 1 and 2% of children. That's using a definition of chronic fatigue syndrome as disabling fatigue, so fatigue that actually stops you doing stuff. In children it probably increases in frequency in puberty but we certainly see a considerable number of children under the age of 12 and in fact our youngest child that we've seen was actually about three and we've had several children under the age of five. So this is an illness that affects everybody and is surprisingly common.

[...]

PORTER

One of the major contributors to the fatigue central to CFS is thought to be poor quality sleep. But the solution isn't as obvious as you might think - indeed it's the exact opposite.

CRAWLEY

They don't have the necessary signals to get up in the morning, they also don't appear to have the necessary signals to go to bed at night - they don't have, what I call, the sleepy hormones. So that means that they're not getting the right cues about how much sleep they need and because they feel tired they sleep for longer. And what we know in all illnesses if you extend the amount of time you sleep then your sleep quality deteriorates. There's only a portion of sleep that actually makes you feel better and that gets less, so you sleep for longer and that gets less, so you sleep for longer and that gets less and so you feel worse and worse and worse.

PORTER

Which is counterintuitive, I mean most people would think the longer you spend in bed the more rest you have the quicker you get better.

CRAWLEY

I know and if a parent managed to work out that they're tired child needed less sleep I'd probably be out of a job but yeah, so that one of the first things we do we actually sleep restrict and that's really, really hard ...

PORTER

And practically that would mean - I mean what sort of level are we talking about?

CRAWLEY

So you sleep restrict - so a total amount of sleep that's the same as their peers would be getting. So for a 16 year old child it would be about eight hours sleep a night, a 12 year old child about nine hours sleep. So that means that for most teenagers we're suggesting that they don't go to bed till about midnight and they get up at eight and they don't sleep during the day. Now to begin with they feel absolutely awful but after two weeks their restorative sleep increases massively and they start to feel better. And the next thing we do is we work on activity. There are three types of activity - there's physical activity, cognitive or thinking activity and emotional activity.

PORTER

So what you're saying is that activity in general is not just the obvious - which is physical - but it's - if you're arguing, if you're upset and if you're doing challenging work - you're doing maths homework or ...

CRAWLEY

Maths or computer or computer games - those are all engaging things. And we know that anything that uses the brain is a. very tiring and b. uses up lots of energy.

PORTER

Do you limit those activities?

CRAWLEY

Well what we do is you look at how a child is living their life and what you'll find and what you see in the children we're seeing today is that they have days when they do loads and days when they do nothing. And the issue is on the days when they do loads they're actually feeling okay and then the next day they feel absolutely dreadful. And so what you're trying to do is not limit activity but spread it out, so it's the same every single day. So in a seven day period they will get the same amount of stuff done but they will do the same everyday. And what that feels like for the child is that on a good day they want to go and do their six hours of stuff and they're only allowed to do three and they're twiddling their fingers and feeling bored and on a bad day they may not feel like doing three hours work but they still do it. And we use a chart system to find the level and when they've found a level then we use a red card system, this was actually invented by one of my patients and I'm particularly proud of it. And what I have in front of me are some red cards, numbered with the number of minutes on them, we use red for high activity and when a child has worked out how much they're meant to do in a day, say it's meant to be three hours, they give themselves three hours worth of red cards which they can use during the day.

PORTER

So 18 10 minute cards.

CRAWLEY

That's right. And so if they - is that right, I haven't checked the maths - so if they go on the computer, for example, for 20 minutes, they use a 20 minute card and then if they go and watch 20 minutes of exciting television they use another 20 minutes or 20 minutes of homework they use the same.

PORTER

And when they run out they have to stop.

CRAWLEY

They have to stop. And they then have to do activity that's not - that's restful or boring and doesn't stimulate them.

PORTER

And what colour is that?

CRAWLEY

Well that's a yellow colour and we don't have yellow cards because that's everything else. And then we also encourage children to do what we call deep rest and there's very good evidence that if you can do that then actually that reduces a lot of the biology that's going on that makes you feel unwell.

PORTER

That's the so-called flop time is it?

CRAWLEY

Yeah we call it flop time or chilling out or something. And quite a lot of teenagers use meditative techniques for that - Tai Chi, Yoga - those sort of things or something called guided imagery. And teenagers are really fabulous actually in using that to enable them to get through a whole day at school or college.

PORTER

And in the card system - so that's your green.

CRAWLEY

That's your green card.

PORTER

And they have to spend that.

CRAWLEY

And then they have to try and introduce a five minute rest every hour for top gold stars.

ACTUALITY

CRAWLEY

How's your sleep at the moment?

JAMES

Well after the operation it was okay and during half term it kind of got mucked up a bit.

CRAWLEY

[Indistinct words] and so there are four colours - blue is sleep, green is rest, yellow is low energy and red is high energy - and the aim - what we're trying to do is to avoid a boom bust cycle and it's pretty good, there's a little bit of variation here, I am quite strict with it as you can imagine. And then what you're really looking for is an absolute equal number of red squares each day and you can see where we did it and we had the same colours [Indistinct words] so I can look it very quickly. So I just tend to add up very quickly - four, five, six, seven, so, one, two, three, four, five, six, seven - so it's about seven hours of red every day and red is physical cognitive or emotional activity, so physical walking, sitting up - in your case riding a bicycle and stuff. For the severely affected children physical would be sitting up, having a meal, brushing your hair and so on. Cognitive would be schoolwork, television, computer and so on. And emotional worries or arguments. And we get them to record emotional stuff here so that if they have a flare - the arguments with the sibling - and it is very important and the point is that if you're having lots of arguments and you don't record it then you end up changing your physical activity because you think it's a physical activity that's set it up. So we get them to record all this. And then yellow is low energy and that's things like television you're not engaged in, so for me that would be watching Top Gear or something like that, that I'm not particularly into or reading Hello magazines rather than a book.

PORTER

Olly's been recovering well from a prolonged episode of chronic fatigue following Esther's advice to restrict his sleep, pace his activity and take regular rest. But he has come to see her today following a recent relapse - or flare up.

ACTUALITY

OLLY

It started in September on my college course.

CRAWLEY

Course in what?

OLLY

Computer games design a Trowbridge.

CRAWLEY

This has been the issue with Olly all alone because Olly is fantastic at computer games and computers and we have had lots of arguments, would you say that's fair?

OLLY

A couple, a couple.

CRAWLEY

About computer usage compared to other things that boys of 15 have to do like schoolwork. So you started your college.

OLLY

Yeah started off really well, did three days. And then I got payback obviously and then it's just kind of gone downhill from there.

CRAWLEY

So before you started college how much were you doing?

OLLY

I was doing quite a lot of exercise but I wasn't doing a lot of academic work because I'd done everything that I needed to do for school and just lying around in the garden enjoying the weather.

PORTER

Flare ups can be triggered by physical, emotional or cognitive stressors, and other insults like viral infections - typically coughs and colds at this time of year. Olly's setback was almost certainly prompted by the strain of going back to college, but many of Dr Esther Crawley's patients are too ill to even get that far.

CRAWLEY

About 10% of children and adults are so severely affected that they cannot leave the house. And in fact what we think in this country is that most of those have properly disengaged a medical professional. So I do go round the country and see children that have been in bed for seven or eight years and don't have a doctor looking after them which I think is still astonishing. On the other hand there is a really interesting illness among athletes called overuse under performance syndrome which sounds exactly like chronic fatigue syndrome. So they get a virus, they reduce their exercise, they try and catch up on their exercise programme, get sick again and the cycle continues. And in the Bath area we have a lot of young teenagers who are training for the Olympics, for example, and they come our way as well. So they're very high level functioning and people don't think they're disabled because they're managing full time school but they still can't do what they really want to do.

PORTER

This has been a very controversial area, both amongst - the way the media's portrayed it, the fact that a lot of doctors have not taken it as seriously as they should have. We've just had a new set of guidance issued by NICE, what difference has that made to you as someone with a special interest in this condition?

CRAWLEY

Well the NICE guidelines is incredibly important. We know - and I think what you're referring to - is about 50% of GPs feel able to make a diagnosis and in fact there was another paper fairly recently that showed 50% of GPs didn't believe in it. So I think the NICE guidelines says very clearly this is a real illness, it causes a huge amount of suffering and by the way a huge amount of loss of earnings and you must take it seriously. As a paediatrician the NICE guidance says three things that are very important. First of all it says that when you see a child who is fatigued, disabled by fatigue, you need to look for lots of reasons for it, you need to exclude leukaemia and things like that and you need to do it quickly. If they're not making any improvement by six weeks you must refer them to a paediatrician, that's new, a lot of GPs don't necessarily refer children to paediatricians. If the child is not making progress, even if they're mildly affected, they need to be referred to a specialist service within six months. If they're severely affected, i.e. unable to leave the house, they need to be a referred to a specialist service immediately. And if they're moderately affected they need to be referred to a specialist service within three months. And that has got huge implications, mainly because there's only about 10% of the country has a specialist service for chronic fatigue syndrome. And this is great for chronic fatigue nationally because it enables people like me to go to commissioners and ask for them to commission specialist services in parts of the country where children currently have no access to help.

PORTER

And in this guidance have NICE come up with an overview of how we should be tackling children with CFS or indeed adults with the condition?

CRAWLEY

Yeah I mean I think there's two forms of treatment that have good research evidence that they work and obviously no treatment works in everybody. The two forms of treatment that have been shown to work are cognitive behavioural therapy and graded exercise. Now what NICE says and what we do in this service is we provide individualised rehabilitation programmes for children that use a sort of pick and mix system that works for the child. And the two areas that we concentrate on mostly is sleep and activity management.

[...]

 

[Dx Revision Watch]

Straying a bit off topic here, but a couple of points I think are worth mentioning in relation to the education of sick children.

My own experience was that two community paediatricians (which are "school doctors" not consultant paeds) recommended that my child be driven 8 miles to a Pupil Referral Unit (PRU) rather than be allocated home tutors through the Local Education Authority (LEA) which was what his hospital paed and senior registrar, school and Educational Welfare Officer (EWO) were recommending.

PRUs are intended primarily for children who are not attending mainstream school because of behavioural issues, pregnant schoolgirls, school phobics and non attenders. Although some children with ME do attend these units, they were not, 10 years ago, geared for accommodating children with special needs due to ill health nor for children who are working at a level that requires specialist subject teachers, and PRU tutors would not necessarily be working to the same exam board syllabus as the school whereas Home Tutors would teach the same syllabus as the school and in liaison with the child's subject teachers and department heads.

Given the requirement for very short (less than 45 mins) study periods on a one to one basis, prolonged rest breaks after studying, a very quiet environment and the exacerbation of symptoms after travelling, the postman could have determined that travelling to a noisy PRU for schooling was totally inappropriate for the child's needs.

The reason given for this recommendation was the need for "social interaction with peer group". I wrote about this on the BMJ site, in September 2003:

http://www.bmj.com/cgi/eletters/327/7416/654#37151

We were fortunate that the hospital was prepared to support us in pushing for our preference for the instigation of LEA home tuition. No Maths specialist was available at that time and it was agreed with the LEA that rather than try and cover five subjects in just a few hours allocated tuition a week, that the home tutor would deliver only English and History and that I would continue to tutor in Maths and Science up to Year 10, in liaison with the school for the syllabus and text books. For Year 10, we were able to secure a Maths specialist for Maths and Statistics as well as retain the English and History subject specialist.

So rather than aid us in securing home education for a sick child, tailored to specific medical and educational needs, two school doctors (neither of whom had met my child, but who had both been given detailed reports on the child's symptoms and level of functioning) considered it was appropriate to bundle a very sick child into a taxi and place them in a noisy PRU solely on the premise that they would benefit from maintaining "social interaction" at a time when the child could barely work at all and then only for very short periods, had severe hyperacusis, significant cognitive impairment and a 24/7 headache!

As a parent with a child or young person with ME you very quickly learn to be assertive but my blood still boils after all these years.

One of the community paeds had also told me that they considered LEA Home Tutors were not in any case skilled in delivering quality education.



Another example of inappropriate education being foist upon a sick child:

Some years ago, a friend's child was taken into hospital with severe abdominal pain. Appendicitis was missed and peritonitis developed. A day or so after the operation, while still groggy and morphined up to the eyeballs, a hospital tutor left World War Two history work sheets on the child's bed for completion.

How many adults, hospitalised and within a day or two of a nasty operation, have work sent in by their offices or are even expected to consider catching up on the backlog from their hospital beds. But this poor child was anticipated to be well enough to immerse themselves in the trenches and the Somme.

 

[Mithriel]

So "normal sleep" for sixteen year olds is eight hours...... Only if they are introduced to the cold wet sponge threat :Retro smile:

It all reads like a coherent story but substitute leukaemia for CFS and it doesn't sound so good. Normal children don't have to limit their activities (or their sleep!) so surely they should be addressing why it is happening.

I am sure that any good result they get is because they are inadvertently introducing pacing to these children. Like the witch doctor who thinks his spells reduce fever without realising it is the willow bark he puts in his potion.

Your experience of the system for your child was horrible. Even if all these psyche theories are right they are not working at ground level for children. It is very minimal, close to useless advice that is not even being implemented properly. So even if it did work very few children are actually getting treated properly with it.

The whole situation is horrendous.

Mithriel

 

[fred]

Suzy, thanks for the link to the Radio 4 programme transcript.

It aptly demonstrates Dr Crawley's lack of knowledge of even the basics of ME.

"...most "glandular fever" is actually chronic fatigue syndrome..."

"...no evidence of muscle inflammation.. "

"...in adults it's a bit more common in girls than boys...."

"The two forms of treatment that have been shown to work are cognitive behavioural therapy and graded exercise."

And where is the evidence for this politically and scientifically incorrect little soundbite?

"....it's common in poor socially deprived groups."

And this?

"..if a parent managed to work out that they're [sic] tired child needed less sleep I'd probably be out of a job.."

 

[Dx Revision Watch]

http://www.bristol.ac.uk/ccah/people/peopledetails/?personKey=X3Fac4CMLRx6HSJBRceHIUWBuN0htL

"
[...]

Esther is a Senior Lecturer at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 250 children and young people per annum.

[...]

Esther is a medical advisor to the Association of young people with ME, and is Chair of the British Association for CFS/ME (BACME). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME. She was on the guideline development group for the NICE guidelines published in August 2007 and is currently part of the MRC CFS/ME Expert working group."

 

[Dr. Yes]

CRAWLEY

They don't have the necessary signals to get up in the morning, they also don't appear to have the necessary signals to go to bed at night - they don't have, what I call, the sleepy hormones. So that means that they're not getting the right cues about how much sleep they need and because they feel tired they sleep for longer. And what we know in all illnesses if you extend the amount of time you sleep then your sleep quality deteriorates. There's only a portion of sleep that actually makes you feel better and that gets less, so you sleep for longer and that gets less, so you sleep for longer and that gets less and so you feel worse and worse and worse.

Am I mistaken, or did she just pull all that sh** out of her a**?

 

[Min]

Having taught in a Pupil Referral Unit I know exactly the sort of 'socialisation' that your child would have been subject to Suzy - what a totally inappropriate referral.


I've seen parents weeping at the way a certain doctor has been treating their very physically ill children.


What on earth do we have to do to obtain biomedical treatment for children with M.E. instead of psychobabble based on unscientific, biased theories?

 

[Dx Revision Watch]

Having taught in a Pupil Referral Unit I know exactly the sort of 'socialisation' that your child would have been subject to Suzy - what a totally inappropriate referral.

Indeed, Min. It wasn't as though he was even comfortable studying at home at the dining room table for short periods with a tutor with a very quiet voice, and where he was able to go and lie down for a hour or so after she had gone, so you will know what a nightmare it would have been in a PRU - not to mention needing to recover from the travelling.

It was evident that the severity of his symptoms and the impact they had on his ability to undertake school work had made little impression on these community paeds.

But compared with the experiences of some parents that I came to know via the internet, we had it relatively easy. No social services, no family therapy, no pressure to consent to interventions we weren't comfortable with and we were fortunate to have a very supportive senior registrar who kept the school and LEA supplied with the necessary paperwork to keep the home tuition in place.

@ Dr. Yes. Yes.

Why have you got rid of the nun? Too many jokes about dirty habits?

 

[fred]

http://www.bristol.ac.uk/ccah/people/peopledetails/?personKey=X3Fac4CMLRx6HSJBRceHIUWBuN0htL

"
[...]

Esther is a Senior Lecturer at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 250 children and young people per annum.

[...]

Esther is a medical advisor to the Association of young people with ME, and is Chair of the British Association for CFS/ME (BACME). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME. She was on the guideline development group for the NICE guidelines published in August 2007 and is currently part of the MRC CFS/ME Expert working group."

 

[Dx Revision Watch]

...I really hope you win on this one.

It would be encouraging if our patient orgs were opposing this pilot. But Action for M.E. are supporting the study, AYME are apparently supportive of it and to date, the ME Association and the Young ME Sufferers Trust have remained silent.

 

[Robin]

Am I mistaken, or did she just pull all that sh** out of her a**?

Huh? She had an asp in her ship? I'm confused!

Seriously, the source (ew) of that particular pearl of knowledge is not clear. Poor quality sleep seems to be a BIG DEAL to her little UK cabal of mad scientists. I'm not sure if melatonin ("sleepy hormones?") has been studied in CFS but she might be referring to cortisol which interacts with ACTH and melatonin. Wessely claims that hypocortosolism can be cured with CBT. So her "let's cut back on sleep" is probably some type of pet theory emerging out of that type of hypothesis. If she has done any research she hasn't published.

As expected, she doesn't talk about underlying illness and the possible effect this could be having on sleep. For those of us that relapse and remit our sleep needs change -- I need only 8 hours when I'm feeling better, when I'm sicker I might need an hour more plus nap(s). When I happen to sleep Crowley's predetermined # of hours it doesn't have much of an effect -- it just depends on what my body needs. I'm one of the rare people who goes to sleep early and gets up in the morning and that doesn't make a difference either.

I'd like to hear from the patients that have been supposedly yanked from bed and benefitted miraculously after two weeks?

It's also kind of weird that she makes it out to be a poor/low class type of disease. We've gone a long way from yuppie flu, I guess!

 

[fred]

It would be encouraging if our patient orgs were opposing this pilot. But Action for M.E. are supporting the study, AYME are apparently supportive of it and to date, the ME Association and the Young ME Sufferers Trust have remained silent.

Isn't Crawley a medical adviser to AYME?

 

[Dx Revision Watch]

Isn't Crawley a medical adviser to AYME?

Yes she is. Their previous adviser got himself trained in RT when AYME did that little uncontrolled Reverse Therapy trial.

 

[Esther12]

Did anyone watch the Derren Brown program debunking the Bronikov technique?

http://www.channel4.com/programmes/derren-brown-investigates/4od#3070693

I'm tempted to write to him about the Lightning Process. It's a bit less impossible, but a more significant force too.

 

[DysautonomiaXMRV]

Don't these people involved in LP for children with CFS/ME risk getting sued by parents of children who aren't mentally ill? Surely the 'practioners' of hybrid CBT brainwashing are playing with fire? If a child has XMRV (all it takes is a blood test at VIPdx to know) or other proven bio-medical problems (such as a heart condition/asthma) and they are worsening child disease by blaming the child for having a dysfunctional mind because of a theory...........then if the theory is wrong, then what? One cannot make a theory correct by simply stating it is, as the Wessely school do. One has to show that LP would reverse heart conditions, immune supression, XMRV, Asthma etc.

That 'aint ever going to happen unless one lives in bingle bongle world with fluffy the elephant riding on the golden wise owl's back.

Is there an apology in writing to the disillusioned party? Is this enough? What if the child is bullied at school because they are teased for being 'lazy' because healthy children find out about LP and tease them for failing to recover? After all, if other kids can recover with LP, why can't they? (That's what happens once a magical spell is claimed to cure CFS/ME in 3 days, as LP is).

If I had been lucky enough to have children, I'd be very angry if I had been told by an 'expert' (for example) my child had exercise phobia and mal adaptive responses to social integration only to find out they were diseased. What would you do as a parent in this situation? Think of the guilt a parent will feel for genuinely believing these spells work and thus blaming your own kid for not getting better. Think of the possible fragmentation of family dynamics (translation: arguments, bad feeling, bad blood). Children can do extreme things, like hang themselves off banister rails - especially if highly pressured by adult or other children and made to feel useless.

In some cases, there is a real risk here a child who fails with LP could commit suicide due to social pressure of feeling a failure and being told they are a failure. For example as an adult, the National ME Centre told me I was a failure. I've never gotten over this psychologically and I'm a grown man, not a little kid. Could parents have a place to report these folk who sell LP as a cure for CFS/ME to the General Medical Council perhaps, or the local educational authority? How can a child consent to this? Kids don't know what they're doing when it comes to authority, especially doctors. I never did when I was 16, never mind 6.

If I was a parent with a child in the UK, traumatised for failing to cure their CFS/ME through LP I would read the following and look hard for breaches of the code:

Good Medical Practice: Duties of a doctor

The duties of a doctor registered with the General Medical Council

"Patients must be able to trust doctors with their lives and health. To justify that trust you must show respect for human life and you must:

* Make the care of your patient your first concern
* Protect and promote the health of patients and the public
* Provide a good standard of practice and care
o Keep your professional knowledge and skills up to date
o Recognise and work within the limits of your competence
o Work with colleagues in the ways that best serve patients' interests
* Treat patients as individuals and respect their dignity
o Treat patients politely and considerately
o Respect patients' right to confidentiality
* Work in partnership with patients
o Listen to patients and respond to their concerns and preferences
o Give patients the information they want or need in a way they can understand
o Respect patients' right to reach decisions with you about their treatment and care
o Support patients in caring for themselves to improve and maintain their health
* Be honest and open and act with integrity
o Act without delay if you have good reason to believe that you or a colleague may be putting patients at risk
o Never discriminate unfairly against patients or colleagues
o Never abuse your patients' trust in you or the public's trust in the profession.

You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions.

Which leads me to ask, is risking a negative psychological and physical (relapse) fall out in vulnerable groups (children) justified in CFS/ME? If so, how? Were the parents informed of how LP can treat a non psychiatric condition, and the scientific evidence that validates this? (NB: There is no science). Does LP prevent heart arrythmia's from over exertion due to saying 'No No No' in your head? As Phil Parker, designer of LP suggests? Is Phil Parker a cardiologist? Do we have a cardiologist who can guarantee heart conditions will not be worsened from over exertion? Who are they, and do they under write this 'research'?

LP for anxiety perhaps, or phobias but not CFS/ME. It's too dangerous. Otherwise, one may be breaking the duties of a doctor...................

 

[Dolphin]

Good points. Similar points could be made about GET etc e.g. kids could be teased for being lazy.

And again, they are risks with GET.

I phrase I mentioned at one stage which a few people said they liked (anyone can use it without mentioning me) is that we are being treated like second class citizens with regard to safety - for other illnesses/diseases/etc, the medical profession is very considered about adverse reactions to interventions. But it's very lax with regard to ME/CFS e.g. patients should be told how to report adverse reactions before they start a rehab program esp. at a specialised clinic. And also told that some people have reported adverse reactions - the way you are before you decide whether you will have a particular surgery, for example.

 

[Mithriel]

In describing the trial Crawley says she wants to see if there are "significant side effects" from LP. So she is doing a trial in children before she knows how safe it is.

Will she tell the parents of these children that she is testing for significant side effects? But wait, she can't because if they don't "believe" in the LP it won't work.

You are so right that the normal rules of society don't apply to us Tom.

Esther, I saw that programme too and thought of LP and all the other rubbish foisted on us by the medical profession. He got so angry at th exploitation of that poor child with CP, just like LP.

Part of this process (which can make bind people see and kids with CP walk) is to get extra energy from the "urogenital region". As my husband said "Just like all the rest, a load of b.....ks" :Retro smile:

Mithriel

 

[Dx Revision Watch]

Update on FOI's for information around the pilot LP study in children 8 to 18

I have now put in two requests for information under the FOI Act in relation to the Bath/Bristol pilot study into the feasibility of recruiting for an RCT into LP and children 8 to 18 years old.

The first request, on 16 April, was made to Royal National Hospital for Rheumatic Diseases, Bath. Bath does not hold the information requested and it was therefore necessary to re-apply to the University of Bristol.

That request went in on 15 May and is due for fulfilment today, 15 June.

A copy of the full request is published in this post:

http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=81589&viewfull=1#post81589

I am not anticipating that responses will be provided for all the information I have requested.

Some material may not have been prepared yet, for example, patient literature. There are various clauses which can be applied for withholding information, for example patient manuals and material which is intended to be published at some point in the future are covered by clauses.

Depending on what is received, it may be necessary to submit a further request for specific information.

Responses are often supplied as locked PDFs and Word documents, so I may require a little time to prepare the responses for my own site, here, and other platforms.

-----------------

This thread you are reading is:

Lightning Process to be Evaluated in Research Study on Children

http://www.forums.aboutmecfs.org/sh...to-be-Evaluated-in-Research-Study-on-Children

But I shall link to this update on the three other threads around LP and chidren on this site, which are:

Thread: Article: An MD on the Lightning Process

http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process

Cort Johnson's Blog Article: An MD on the Lightning Process

http://www.forums.aboutmecfs.org/content.php?114-An-MD-on-the-Lightning-Process

My son & i are giving the lightning process a go on this week

http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week


A good deal of awareness raising has already been done on this site and a lot of related material has already been posted.

For those coming late to this issue, the press release for the announcement of the pilot is here:

Research study to investigate a chronic childhood condition
Press release issued 3 March 2010

http://www.bris.ac.uk/news/2010/6866.html

The MRC ethics guidelines for research using children is here:

MRC Medical Resarch Involving Children (Nov 2004, revised Aug 2007)

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430

4.1 Does the research need to be carried out with children? Research involving children should only be carried out if it cannot feasibly be carried out on adults.

So, I'll be updating again in the next couple of days, when I have my response.

Suzy

 

[Dx Revision Watch]

Yesterday, I received the response to my 16 May 2010 FOI from the University of Bristol.

As expected, very few of my questions have been answered and FOIA Clause 22(1)(a) is being cited:

"This information is intended for future publication when the study protocol and other related documents are published online. It is therefore exempt from disclosure under section 22(1)(a) of the Freedom of Information Act."

They are permitted within the Act to withhold information and materials under this clause. However, I would query whether all the information I have requested will be covered by the study protocol, patient information etc, and I would also query whether the funding application documents and any accompanying documentation that forms part of the application, and the ethics approval documents would be published as part of the pilot study protocol - I do not think this is standard practice.

It is evident that the set of responses sent to me, yesterday, are responses not to the revised request that had been receipted on 17 May, but responses to the original request for information that I had submitted to Bath and which had been responded to by Bath on 11 May 2010 (who took the full 20 working days to inform me that the information requested is not held by that institution).

At no time was I informed that my request to Royal National Hospital for Rheumatic Diseases, Bath would be forwarded to the University of Bristol FOI office or would be dealt with by that office.

Since these are not the revised questions as submitted to Bristol as a separate request, the responses are incomplete and do not accord with the questions as set out in the email request of 16 May 2010.

Since there has been an administrative error and since the responses do not relate to the questions as submitted on 16 May I have asked Bristol to provide me with an amended response.

And it is this response that I shall publish, when it arrives.

What I can tell you now is that:

"The study is currently going through the ethics approval procedure and this information is expected to be published around August / September 2010."​

So the pilot is still waiting on ethics approval.

Suzy

 

[V99]

This was posted as part of the summary of the ME Association Board of Trustees meeting June 14-15 2010.

Lightning Process Trustees held a further discussion on a new research study that has been announced into the use of the Lightning Process. Costing 164,000, the project will investigate how children and adolescents could be involved into a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns have been raised about the possible use of children and adolescents in this type of study and we are discussing this with our colleagues in other ME/CFS charities. More information on the study can be found in the March news archive on the MEA website.