NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

As we are in Scotland we cannot engage with the process. I have posted the link on a closed Facebook group and have had some initial feedback which shared my own initial concerns.

There is no way kids who are moderate/ severe can engage with this.

Telephone 1 to 1 ones are a no go area for many . Skype may be even more challenging. ( some kids have had telephone input from services previously and it was not good , many are not able to engage via phone for something that needs significant cognitive input , some are traumatised from previous interactions with authority and a 1 to 1 is asking too much )

Cognitive challenges of responding even to preset questions when you don't know what your capabilities will be at a time point does not seem a considered way of engagement no matter how " nice" the researcher is. It also does not seem to be ideal for a fluctuating condition.

It seems to feed a narrative / understanding of " severe" meaning still attending school for 1 hour a week and does not appreciate at all the cognitive restriction aspect. We are back to " fatigue" which is what the paediatric literature is mainly concerned with , and what someone outside our " bubble" may work to .

This could result in a very skewed evidence base for children and adolescents with little representation of those who need the most support.

The mums I know have emailed to advise that their kids would love to be given the opportunity to be part of the process, but cannot be involved if it is as currently framed. To give an idea , although a small group, some of their kids are on reduced timetables, some get LA tutors, some are home ed, and some cannot do formal education st all: none of their kids can engage.



It seems yet again that charities and authority simply do not have a clue.

 

I am appalled and it would seem that RCPCH and Crawley are to blame for this misunderstanding. I would advise all parents that have tried to engage with this to email CFSME@nice.org.uk

We need to keep a track of this and as none of the charities are taking this in hand we need to find a way of collating the information so that we can take this forward.

Action for ME should take some responsibility for this. Made me grumpy and now off to have a bucket of Coffee

Would you mind if I tweeted the information you have given me and ask world wide for help? That should put the fat cat amongst the fat pigeons.

 

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.

 

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.

 

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

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.

 

There are several committee members who've treated severe patients and who have recommended wheelchairs, etc, to their patients.

 

There is an emphasis on information coming from direct engagement with children. This was a funding requirement for the Educate ME project and was why the surveymonkey survey was necessary - I agree it would be great to get things direct from the horses mouth, but it is difficult to do this in an inclusive way.

 

For context, I’m a Speech & Language Therapist with severe ME.

This is a general reply for the thread. I'm quoting some of @Jonathan Edwards ' points as they were relevant to the points I wanted to make.

I think plenty of kids who are well able to communicate will be excluded from this process, for two reasons:

1. It focuses on spoken communication only.

2. It requires stamina, in that kids need to be able to speak and understand for up to an hour (with provision for one rest in the participant info leaflet).

This will exclude kids with more cognitive dysfunction. At least some of these kids will be able to communicate in writing, though. They may communicate with family and friends by text message, email, social media apps and notes.

For example, if this process were for adults with ME, I wouldn’t be able to participate. But if you gave me the questions in written format, in something I could save and come back to over the course of a day or a week before submitting it, I could.

For me, a home visit would not help. It would be far harder than a phone call. A video call would be harder than a phone call.

In my view, many of the kids who wouldn't be able to go to Oxford Brookes or do a video call could be included by having a written option. This shouldn’t be too onerous on the researchers, since the kids’ parents/carers are going to be submitting their answers to the same questions online (this is from the participant info leaflet):

Other kids might be able to read the questions and then record their own spoken answers at their own pace, and submit them.

This is good, but I’d still like the participation of those with severe and very severe ME to be facilitated as much as possible.

My suggestion is to ask kids who would not be able to participate in this format how they could participate. And then see how many of them can be facilitated, reasonably.

 

Is it worth suggesting this (about recording answers at one's own pace)?

 

This thread touches on this ...

https://www.s4me.info/threads/why-is-having-a-conversation-so-much-harder-than-posting-online.10783/

I think it is an essential aspect for NICE to consider, in order to enable people with severe ME to communicate at all. Their voices are crucial.

I think the same problem actually affects all pwME, but to lesser degrees with lower severity. My wife is mild/moderate, but if we go out shopping there comes a point her ability to think her way through what she is trying to do, and thereby communicate, drops through the floor. One of my roles I see as trying to help her through that on such occasions. Either stop for coffee and snack (only a slim chance of working), or if it's within my competence, make a decision on her behalf in her 'absence'.

 

I agree. Even if I did not have M.E., due to my autism I would not be able to participate in any consultations or research that used only phone and/or skype or a verbal interview (i.e. that required speaking verbally). Is it acceptable to exclude adults or children from any NHS research and consultations on the basis of their disabilites and/or health conditions?

Shouldn't the Accessible Information Standard now apply to all NICE commissioned research?

https://www.england.nhs.uk/ourwork/accessibleinfo/

 

Yes. Given that communication problems are key symptom of ME, it feels akin excluding people from discussing, say, a Heart Disease guideline if they are too ill to get out of bed due to their heart condition.

 

The Accessible Information Standard applies to every person who has a communication problem due to either a disability or a health condition. It is not just for people with visual impairments and/or hearing loss. I've been meaning to start a thread specifically on it, but haven't found the needed energy/mental clarity to do so yet.

I only learnt about it because my youngest was given a major project to set up and manage for it when it was first being brought in (her software/publishing company are commissioned to do the braille, large print, easy read etc. translations of patient letters for various NHS organisations).

 

The fact that this has not been fully considered, or potential user groups checked out to determine how engagement can best be achieved speaks volumes.

We start from an assumption, from the existing view of illness groupings, with little thought of how technology can make things easier.

If you can't adequately define the groups, ( or indeed accept the definition of severe that paediatrics seems obsessed with) nor appreciate the obstacles to participation at the start, what will be the quality of the evidence?

 

I agree with the email idea.
Perhaps parents could also add in ideas of what adjustments would be needed, in order that their child might have been able to participate. See next comment.

See above response to @Tilly ’s post.
Surely accessibility must have been considered? Not many of my adult friends with ME would even be able to take part in the process as described.

Yes.
The process does not seem to have made access easy for children (and their parents) to actually participate.

 

I understand that but the paediatric is of great concern due to the previous experience of many. I know many have written in about their concerns and have not had a reply.

Even with the debate they are not changing their ways and when you have very young children just diagnosed (6 months) to pressure them to keep going to school and socialise until they drop and are severe has to be known and understood. Telling a child they are not doing their best when I know you know how it feels is beyond frustrating for parents in groups. This understanding should not be in groups it should be openly discussed. The reality is beyond anyone's imaginations and misdiagnosis is a whole other story.

We have to know the extent of what happens, otherwise we are not taking advantage and the problems of the past just entrenched.

 

I did ask for parent to be involved and for those who have been falsely accused of FII along with severe adults but have not heard anything that suggest they are going to do this.

 

https://twitter.com/user/status/1172551151612563456

 

Sorry nut yo respond @Tilly . Feel free to tweet anything.