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Important factors to consider when treating children with chronic fatigue syndrome.... Crawley et al

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
If you just look at the central purpose of this study, to help create a better questionnaire to measure outcomes for patients, I think it's pretty helpful.
This study aimed to understand the perspectives of specialist paediatric CFS/ME health professionals and identify outcomes that are clinically important....

CONCLUSIONS:

Clinically important outcomes in paediatric CFS/ME involve a range of aspects of health. Health professionals consider increases in physical function yet maintaining school functioning and participation more widely as important outcomes from treatment. The results are similar to those described by children in a recent study and will be combined to develop a new child-specific PROM that has strong clinical utility and patient relevance.

The senior author, Kirstie Haywood, has published some great stuff, She wrote a damning systematic review of PROMs used to date in CFS/ME, and a similar one (with Esther Crawley) on children came to a similar conclusion and was the basis for creating a new one. The idea of consulting with both patients and clinicians on what matters is just the way it should be done. We desperately need to move on from scales like Chalder where Simon Wessely has boasted since there were no questionnaires he made up the the questions himself (no mention of asking patients what mattered).

It's important the patients continue to be involved, particularly in selecting the questions that make the final draft questionnaire (then comes the tedious but critical work of statistical validation).

I agree with comments about using actometers, and that's a critical way of validating the new questionnaire, as well as a good way to measure response bias in any cllinical trials (a modest effect, but essential to allow for this, as PACE's failure to do so shows). However, much can't be measures so easily eg fatigue, mental concentration problems and social activity and I like that this study seems to see the need to measure a wide range of outcomes to get meaningful measures of progress.

Some of the wider comments were a bit annoying, such as this gem:
Goal attainment has been found to be significant predictor of quality of life improvement for people with CFS/ME [49]
Which could be rewritten more usefully as 'making progress is a significant predictor of improved quality of life'. I'm not sure that adds anything to the paper.

But overall, I like this and hope it will lead to a robust, valid and useful outcome measure for children at some point.
 
Messages
83
However, much can't be measures so easily eg fatigue, mental concentration problems and social activity and I like that this study seems to see the need to measure a wide range of outcomes to get meaningful measures of progress.
It may be possible to measure cognitive abilities via methods such as n-back testing, puzzle and spacial awareness games for mental acuity etc.

Perhaps a 'composite' measure from actigraphy, cognitive testing and questionnaire is required.
 

RogerBlack

Senior Member
Messages
902
It may be possible to measure cognitive abilities via methods such as n-back testing, puzzle and spacial awareness games for mental acuity etc.

Perhaps a 'composite' measure from actigraphy, cognitive testing and questionnaire is required.

There is already an excellent test of combined thinking speed and physical ability.
Dodgeball.
Just have the experimenter randomly throw balls at the subjects.
 
Messages
18
If you just look at the central purpose of this study, to help create a better questionnaire to measure outcomes for patients, I think it's pretty helpful.


The senior author, Kirstie Haywood, has published some great stuff, She wrote a damning systematic review of PROMs used to date in CFS/ME, and a similar one (with Esther Crawley) on children came to a similar conclusion and was the basis for creating a new one. The idea of consulting with both patients and clinicians on what matters is just the way it should be done. We desperately need to move on from scales like Chalder where Simon Wessely has boasted since there were no questionnaires he made up the the questions himself (no mention of asking patients what mattered).

It's important the patients continue to be involved, particularly in selecting the questions that make the final draft questionnaire (then comes the tedious but critical work of statistical validation).

I agree with comments about using actometers, and that's a critical way of validating the new questionnaire, as well as a good way to measure response bias in any cllinical trials (a modest effect, but essential to allow for this, as PACE's failure to do so shows). However, much can't be measures so easily eg fatigue, mental concentration problems and social activity and I like that this study seems to see the need to measure a wide range of outcomes to get meaningful measures of progress.

Some of the wider comments were a bit annoying, such as this gem:
Which could be rewritten more usefully as 'making progress is a significant predictor of improved quality of life'. I'm not sure that adds anything to the paper.

But overall, I like this and hope it will lead to a robust, valid and useful outcome measure for children at some point.

First problem Children with ME find stringing a sentence together hard enough and have all sorts of test pushed at them, I do not think a paper ticking exercise would be that helpful, or diary.

Secondly children are still dismissed and their illness insignificant, they are hardly likely to tell the absolute truth even if they could. I have yet to meet a professional who has taken my son's coeliac PoTS OI hypermobile joints, no one has ever seen the whole picture either so how can you ask their opinion?

Thirdly no one has asked the mothers, the backbone that all children rely on and would be able to tell with truth and honesty most of the core issues, but still would only be guessing as to their children. Although a healthy dollop of child honesty is always a must and can put us all straight.

I thought this study asked 15 health professionals? professor Crawley's idea of what children ask for is at odds to the children's conversations I have heard.

A strong baseline once established (could take months with children), but once you have this established anything above the baseline that does not provoke symptoms is good, but you have a four day turnaround before you can try it again. One activity emotion (joy excitement), cognition impacts on another so you have to look at each activity even joy, excitement, getting cross etc. Once that is established you move on to the next. You can not put everything together and just expect it to happen, write a tick box and expect the answer. This is what makes me so cross.

Just a little bit of an idea about a 11 year old with ME. Last Thursday he went to the dentist travel has an impact on him, so we allow four days before we do anything else.

The dentist is very accommodating and funny. she explains about his teeth growing through an old one which has broken in two and it was ok and he was cleaning it well. I said he would not believe me, with which he replied I was not a professional so did not trust what I had to say.

When we came out of the dentists we were laughing, in the 40 mins we had out we had may impacts on him, being out in the fresh air, laughing, socialising, travel and then there was the inevitable longing to do more.

2 days his fine and then a slow decline until the fourth day. He had a couple of nose bleeds. How would this pan out on any form? But this is my point, I hear that he is awake so I take him his glass of water and notice the blood on the carpet and go and help him with his nose as they are heavy. How are you I ask, Fine he replies as he chokes on the blood. When things have settled down and I take his HR/BP i ask him how his been this morning and he reply oh fine, now do take a young person through all of this and ask the questions on a questionnaire. his pain I can see in his legs, how he holds his right arm and that his skin has gone a greenish shade of ash. He is not fine but it is not right for me to correct him. To have lived it once is enough. When a child crashes it crushes them in such a way I have no words to explain. For a child who could do maths with ease to struggle to do a do-to-dot do you really need to make life so difficult? It is not difficult to understand a baseline and work function above or ham below monitor their PoTS and OI is also a good indicator. In the years of all this mess Professor Crawley should know children and their struggle more than expect them to write a diary or tickbox of their pain and possible other problems.

I am discouraged to say the least.
 
Messages
18
First problem Children with ME find stringing a sentence together hard enough and have all sorts of test pushed at them, I do not think a paper ticking exercise would be that helpful, or diary.

Secondly children are still dismissed and their illness insignificant, they are hardly likely to tell the absolute truth even if they could. I have yet to meet a professional who has taken my son's coeliac PoTS OI hypermobile joints, no one has ever seen the whole picture either so how can you ask their opinion?

Thirdly no one has asked the mothers, the backbone that all children rely on and would be able to tell with truth and honesty most of the core issues, but still would only be guessing as to their children. Although a healthy dollop of child honesty is always a must and can put us all straight.

I thought this study asked 15 health professionals? professor Crawley's idea of what children ask for is at odds to the children's conversations I have heard.

A strong baseline once established (could take months with children), but once you have this established anything above the baseline that does not provoke symptoms is good, but you have a four day turnaround before you can try it again. One activity emotion (joy excitement), cognition impacts on another so you have to look at each activity even joy, excitement, getting cross etc. Once that is established you move on to the next. You can not put everything together and just expect it to happen, write a tick box and expect the answer. This is what makes me so cross.

Just a little bit of an idea about a 11 year old with ME. Last Thursday he went to the dentist travel has an impact on him, so we allow four days before we do anything else.

The dentist is very accommodating and funny. she explains about his teeth growing through an old one which has broken in two and it was ok and he was cleaning it well. I said he would not believe me, with which he replied I was not a professional so did not trust what I had to say.

When we came out of the dentists we were laughing, in the 40 mins we had out we had may impacts on him, being out in the fresh air, laughing, socialising, travel and then there was the inevitable longing to do more.

2 days his fine and then a slow decline until the fourth day. He had a couple of nose bleeds. How would this pan out on any form? But this is my point, I hear that he is awake so I take him his glass of water and notice the blood on the carpet and go and help him with his nose as they are heavy. How are you I ask, Fine he replies as he chokes on the blood. When things have settled down and I take his HR/BP i ask him how his been this morning and he reply oh fine, now do take a young person through all of this and ask the questions on a questionnaire. his pain I can see in his legs, how he holds his right arm and that his skin has gone a greenish shade of ash. He is not fine but it is not right for me to correct him. To have lived it once is enough. When a child crashes it crushes them in such a way I have no words to explain. For a child who could do maths with ease to struggle to do a do-to-dot do you really need to make life so difficult? It is not difficult to understand a baseline and work function above or ham below monitor their PoTS and OI is also a good indicator. In the years of all this mess Professor Crawley should know children and their struggle more than expect them to write a diary or tickbox of their pain and possible other problems.

I am discouraged to say the least.

Well then I decided to have a further search http://adc.bmj.com/content/early/2015/10/09/archdischild-2015-308831.long
I may go and have a scream at a wall a couple of times to really get my head around this. Research is hampered in children by grown ups covering up the real issues! Fluff a duck this gets me so cross. Moods are a small part of this illness and need not be mentioned apart for the obvious - their life as they knew it came to an abrupt end.

"Children with CFS/ME report a range of often extreme impacts on their health" Just hold that thought!!! a range of often extreme impacts on their health no fluff there is no holding back with the truth on this one is there! Anyone reading this would think that kids are just reporting, with no foundation to what they say!!! Oh for the love of a spring chicken what we have to put up with. No mention of criteria and known facts about this illness just reported facts from children whoop whoop Social workers will have a field day with that on its own.

Oh here we go NICE guidelines no mention of PEM which is clearly marked and a direct impact on children's health. But we don't want to know why that is? Oh yes we do every child I have spoken to or mother of a child with ME want to desperately know why they suffer so much doing the most simple things. WHY!

Right, now lets have a look at the SMILE trial listed, well blow my tail feathers a mention but no evidence of figures, no mention of the kids made housebound, nope?

Well I'm off to find a wall, will be back to try to be more constructive, it may take a while but I will be back.

Can anyone tell me if you can quote a trial that has not released the data?
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
You make really good points @TillyMoments about the knowledge parents have that should supplement the reporting from young people with ME.

I have found that health professionals can attempt to sideline parents, especially mothers, of young people with ME. I get the impression from some that they think that mothers are part of the problem - they think we are mollycoddling our children and causing them to focus unduly on their symptoms. As a mother who has always encouraged my children to grow towards independence, I find it pretty offensive.

Teenage boys have a tendency to have a grunting phase at around age 14 at the best of times. Immediately after sitting in a waiting room for 40 minutes after a walk through the hospital car park and the corridors is definitely not the best of times for a person with ME. Compounding the fatigue and dizziness is a male tendency to play down weakness and an understanding that having ME is somehow shameful. Further compounding that is an attitude that doctors can't do anything to help and almost certainly have some pretty stupid ideas.

My experience is that the result of all of that is that a teenage boy may not make much of an effort to explain how things are to doctors and possibly does not even acknowledge to himself how bad things are.

For example, when my son was being assessed for POTS, I mentioned that he lies on the bathroom floor for 10 or 15 minutes after a bath. The specialist asked my son why he does that and my son replied 'ah, well, because I can'. And why does he do his homework lying in a sleeping bag on the kitchen floor? 'It's comfortable.'

I agree that monitoring tangible things like OI measures are important for assessing change over time. Other things might be body temperature, hours of sleep and weekly hours spent out of the house.

I've seen the pale greenish skin when things are bad too @TillyMoments. Best wishes to you and your boy.
 
Messages
18
Thank you Hutan, I so get where the boys are coming from as my son would say "they are too stupid to listen, so why try?"
In the new Fitnet-NHS trial to be done on 700 kids with; well quite frankly I give up trying to guess what its on, it clearly states Prohibited detailed discussions but the child has to write a diary? That is directly aimed at mothers and if they follow the trial it is based on the mothers are trained as well. Professor Crawley puts it educating the mothers about CFS/ME but as over 200 mothers have been accused but none found guilty of Munchhausen, it is a constant battle I and my friends fight on a daily basis. Always anxiety and depression is mentioned; which doctors and social services cling onto, but none of the real issues of ME like PoTS OI which many have. If you look at the hours of activity and cognitive involvement, none of the parents are given warnings of what this can do to a child with ME. Mothers are ruled out in fact in the SMILE trial it was insinuated that mothers actively stopped their children, when the children would have liked to continue. Unless a medical person stands up and makes it clear harms will be done we have no hope of fighting and most mums stay quiet due to the impact of what these people can do to you and your child.
FitnetNHS trial information about mangment No talking about symptoms.JPG
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
children... god, if I just had known that I actually had a disease called ME at the time all this started, back when I was just 13, how different would things had been. I though I was daying back then, that my days were counted, the fear was undescriptible. Little did I know that the disease was terrible indeed, but that 20 years later, I'm still here, and that as long as I don't give up, there's certainly hopw. I'm confident, that another 20 years from now, I would look back at today, and laugh. I can feel it in my heart