I am not sure that I see this proposal as unreasonable. NICE is at least making an attempt to get input from patients. There is a limit to what is practical and also a limit to what can be done without being intrusive or breaching confidentiality relating to children. People have to be asked to volunteer and unless they are able to communicate there seems no point in volunteering. People on the committee are well aware of the problems of severe cases. A number of them are health professionals who have contact with severe cases.
I may have missed something but I do not see that anyone is excluded beyond being able to talk on the phone or Skype. Presumably those who cannot do that would need home visits. That would seem to me to be impractical on cost grounds and potentially intrusive.
I am stunned at that comment.
I have yet to find any NHS hospital that takes severe children or understands the implications of the severity or PEM. If you can't get to hospital appointments, young people are dismissed and no records are kept on our children. The most severe left behind in beds festering.
This is being discussed daily so I am stunned by that statement. How are they going to be recognised and their reality or needs known if time is not spent on finding out about their condition or needs?
Those on the committee are the ones taking the wheelchairs away from our children, dismissing them because they cannot attend the appointments and are of the opinion that there is nothing physically wrong with them, I know this because I hear the experiences of the paedicatric services. Bath have just put out and job advert saying that
In the minds of the medical profession when my son enters the room there is nothing they can do and there is nothing wrong with his body. Something caused it by it is gone and there we go. He know this and asks what is the point of going if they are not going to listen and that is exactly what you are saying what is the point?
Our children's reality is being gaslighted is the point. To get Guidelines fit for purpose we need the severity of ME to be recognised and understood.
@Suffolkres has battled and has once her family been recognised as severe by anyone? NO because no one can explain sever ME.
Perhaps we should start there what is severe ME ?
My son 6 years ill made to push his body and brain beyond their sustained ability struggles daily to have one lesson of 15 min once a week. How is his needs going to be met with children that go to school once a week. Is he recognised as severe no, the hospital are clueless and advice you to go on the lightning process. They often try to sign him off, get him off their books disbelieve it is ME?
Do they make home visits NO so we can only attend an appointment. When he is so desperate wee have no place to go. What happens when he can not longer cope, he has to suck it up and keep quiet.
Do they know what to do when he has air hunger or his heart is racing NO Had any help NO, appropriate test NO, appropriate handling NO appalling attitude towards him causing PTSD YES. HE IS NOT ALONE. We as mothers have been talking for decades with respect and we are listened to and then dismissed, we are not heard.
So far this week and it is only Friday, I have heard of many who have been dismissed and told to walk back to health it is truly sickening. Who is listening to them, who wants to listen to them? NO ONE?
Do social workers understand no, they get called on a regular basis and the problem is growing.
Severity by RCPCH and Prof Crawley is not able to go to school full time. Does that explain Gigi? Do the doctors know how to treat her. Their treatment is to constantly sit her up and try to move her legs and arms saying she is holding back her recovery.
Her pain, her pain now is unmanageable. Who get the blame the child and the mother. They are now saying they will not let her home as the mother is not allowing treatment. How many more young people have to die before they are heard.
If we are not prepared to give these children a voice the only treatment will be for moderate and the whole cycle of keep them going and dismiss them from the records as soon as they become bedbound will continue. Merryn Crofts is not the only young person to die this way.
It may be inconvenient and difficult time consuming but Emily Collingridge doctor was taken away from her when she most needed them and as a result she died. Why? Because of the myth of ME being CFS only.
Jessica still is not recognised as sever ME and she has been living with this illness for decades.
These are only ones that are in the public eye. How many are hidden because they cannot speak? How many tube fed and in agony. There are forums all over the world with these children and no one is hearing their history.
It has been decades from when ME was first reported if doctors knew about severity we would not have this problem. Recently I was contacted by and adult who had me at the age of 6 they are now 65 they said and I quote "Odd 'catch' that I'm experiencing now. Since I've had this for over 50yrs, doctors who treated me back at ages 6-65, have now retired. At 72, no doctor I can find here seems to know about it and I get raised eyebrows. We need a cure.
Now is the time to spend hearing those children
A lot of children simply will not engage if talking is the set format. There is a lot of experience of disbelief, asymmetric power relationships, guarded threats - this is more likely if you go moderate/ severe. There is a lack of trust, a lot of anxiety, and some kids will want to " say the right thing" whatever they construe this to be. Quite a number have done this to make something/somebody go away.
If kids have problems with survey monkey formats ( which they did for Educate ME project) in terms of elucidating their experiences to simple questions, then talking may be a distinct hit or miss- it will be entirely dependent on the ability of a stranger to gain trust and draw out info - no mean feat.
I know that my daughter gets frustrated when she cannot explain things in a way that people understand - in part this is due to general language which struggles to convey experience in a meaningful way to those who have not experienced this illness. Add concentration/ working memory issues and it makes it a lot harder.
The concerns are that severe is not recognised in children, moderate is not a lot better; most interactions have been with mild or mild/ moderate. There is very little evidence for severe, and virtually no exploration of comorbidities in children. POTS / OI symptoms are not uncommon but go unrecognised for example, and these can be readily treatable. Gaining feedback which reflects this would indeed be invaluable - from the format, it is unlikely that a full picture can be garnered.
It would seem to be not beyond the wit of man to anticipate and devise an interaction strategy that is multi-pronged which could invite written responses to pre set questions. Smart phones have speech to text which could help with this.
If this is the only format, then the recorded experience will not be representative.
It may be helpful to know what the questions are - from experience these can be difficult for children to respond to as language can be more complex than needed, questions can be leading; even questions I thought were straightforward for with the educate ME project, my daughter and others struggled with.
This is excellent summing up of the problem.
I was expecting their experience told as that will show a picture of failure that they then can put right.
You cannot fix a problem if you do not understand it or know how it got so bad.
A simple recording of how they became ill.
At what level of ability did they start with when they went to the Dr.
What treatments they had.
What tests and results. (filled out by the parent but explained by the young person)
What was understood and not understood.
What ability are they now.
What would they change.
What one thing do they need.
The parent to fill out the detailed history would be helpful but knowing that most of our children get no treatment or testing that may not be that helpful.
