UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

I agree, but inclined to say should raise questions.

 

This is my reply to the email sent to me.

We believed right from the engagement meeting that NICE was to engage with children who have severe ME along with the adults, enabling them to have a voice from the very start. Why has this not happened?

We also believed that mothers falsely accused of Fabricating and Inducing Illness (FII) were to be heard. These three experiences show the true picture of the treatment of those suffering with ME in the UK today. These facts raised patient safety issues and we were assured that every effort would be made to engage with those who suffered the most.

You cannot make sound guidelines without that true picture. Without those that are hidden from statistics, due to not daring to ask for help because of the current climate of patient blame, demonising motherhood and vicious media assaults on those that ask questions of the medical profession.

On the engagement meeting we thought NICE agreed an acknowledged the problems and were intent on changing the harm done to those most vulnerable. However, it would appear they just gave us “lip service”.

To ask at such short notice - a total of 16 days and demand research in such a manner shows a distinct lack of respect to those who have ME and their families. It also points to NICE just going through a formality and this erodes the little trust the ME community have left with NICE.

The stipulation of tender gives rise to serious issues:

1. A serious lack of understanding of ME and PEM
2. A serious lack of understanding the research capabilities in the UK for those with ME and PEM
3. A safeguarding issue to those young people that have been traumatised by the system.
4. A conflict of interest with those involved with treatments of CBT and GET and needs to be clearly addressed with researchers putting themselves forward.
5. Ethical approval needs to be gained.
6. A lack of understanding of how the revised NICE safeguarding guidelines have impacted on children with ME on accessing education, involvement of Social Services, healthcare, and the courts.

It shows that NICE are just giving lip service to those that suffer the most. That they are willing to disregard the facts and experiences of families.

 

I hope people don’t take this the wrong way ...I had quite a lot of experience when I was preparing my employment tribunal when I got “made redundant”.

I think when dealing with these things it’s always better to play the reasonable party in replies (no matter how much the other party is being unreasonable). Whilst I 100% agree with the sentiment and the points raised, we need to be careful not to alienate and discourage the decision makers by appearing unreasonable in tone. It will get us knowhere to acuse people of lip service and such while we actually want them to do something different. Responding in this way only shuts down discussion and makes people entrenched.

Sorry it just doesn’t read as a reasonable request ..and it’s mainly tone rather than the points raised.

 

My concern is that the paediatric specialists who may well be involved are those responsible for many of the issues experienced.

 

I agree with you and take your point on board 100%

The problem is that when you have engaged with them over several years and in some cases decades there comes a time to call them out? This is not just a ME community problem but also Mesh and 101 different problems with different guidelines. The FII guidelines are particularly awful and NICE implemented them as we were writing in with children's experience of being threatened with or taken into secure mental units.

There needs to be a balance I agree, but us mothers have none on our side at all and that needs to be shown in the strongest light. Our children belong to the state and the corporate parent not to the biological parent.

 

I do not know of any that work in the NHS ME/CFS centres that know and understand ME and PEM.

 

@Tilly , perhaps you cold post a link to the FII guidance so that people can understand a bit better. Are these also perhaps linked to the recent seminar re " safeguarding" involving Bath personnel, police etc?

 

Yes it was DR Glaser who was talking at that seminar. She sat on the NICE Safeguarding guidelines. I believe that Action for ME also sat on them or is a stakeholder?

Dr Glaser teaches how to accuse mothers/parents of FII though the Royal College of Paediatric and Child Health (RCPCH). There is also a 2 day course in how to be an expert witness.

These are the slides she uses. https://www.bacch.org.uk/conference...1X5Ykb8J8l9bKBC3Ik7HhP-dj5YdJ_fs-2s. [Online]

Dr Glaser uses Dr Roy Meadows’ discredit methods (cot death). Is believe is involved in children's advocacy work, adoption and researches FII. You can hear her views here https://www.bbc.co.uk/programmes/m00030dr There have been concerns raised by FOI but no response https://www.whatdotheyknow.com/request/dr_danya_glaser_clarification_of

If mothers agree to engage in research into FII then they stand a better chance of getting their children back. It would appear that no evidence is needed and Courts are closed and do not have to accept evidence from the mother.

As stated by the minister in the latest debate the Royal Colleges are the ones responsible for education and are the ones who do most if not all the information to be gathered for NICE. National Guideline Centre + Care Quality Improvement Department + Royal College of Physicians are all joined up. In addition the guidelines will become common law soon.

Research by Ester Crawley for RCPCH on severe CFS/ME
https://www.rcpch.ac.uk/bpsu-study-severe-chronic-fatigue-syndrome-myalgic-encephalitis-cfsme


Most FII accusation stems from lack of education and socialisation as a cause of concern for FII.

This is NICE https://www.nice.org.uk/guidance/CG...avioural-interpersonal-and-social-functioning



Then you follow the pathway on the Royal Colleges https://www.rcpch.ac.uk/resources/f...ess-fii-carers-practical-guide-paediatricians

The problem is if the medical staff do not understand ME and PEM then any paediatric would assume fabrication by the parent


You have to understand the pathway and how the IAPT is being pushed to get the big picture with this.

I hope this makes sense. At the moment it would seem no child with CFS is allowed to be off school and soon young children will have to go through a mental health assessment.

This is what school are told

 

This is extremely disturbing. Their definition of child abuse overlaps with what I would consider normal in circumstances where a child is ill and doctors can't quite figure it out. She even admits that "FII or perplexing presentations are remarkably similar". I assume that by perplexing presentations she means when the child has an illness and nobody can quite make sense of it.

 

perhaps this is what makes charities' and public's stances on things difficult to understand - the fact that this is so little known of is the reason it thrives

 

You are right and this is the difficulty we are finding.

Because of the now Health wellbeing and social care are all one, we as mothers get hit from all sides. Notice there need not be any proof or need to show reason, just accuse and pass it on.

 

If I remember right, the NICE guidelines explicitly say that patients have a right to decline treatment.

 

seemingly not if you are a child

 

I'm a bit perplexed by this. Even if research is done in short order, it takes time to analyze it, write it up and get it peer-reviewed and published. I mean, that could take well over a year, if not more. So how do they know any of this data will be ready in time for consideration? Or is this going to be data considered outside of a peer-review/publication process? I don't get it.

 

Perhaps a service evaluation by patient group. This would bypass ethical review.

Sadly i have a horrible feeling as to those who are " placed" to do this if RCP are in charge.

 

Not if they suspect FII, that refusal is used against the mother as unwilling to let the child engage in education or socialising. So we find ourselves in a constant loop of

Gp and paediatrics not understanding the complexities of ME EDS mast Cell and PEM. They do not believe they are physical or only partly physical. Chronic pain is a persons perspective and all pain is the same, is the common thinking. It's how pain is perceived, you only have to look at period pain and endometriosis or MS. We only see pain if you are dying?

Our children look normal but do mot have the cognition to answer questions and look to their mum's to help them out. This is another red flag to the FII bull and follows the pathway of relationship in the guidelines.

If we answer honestly we are looked as though we are fabricating as nothing could be that bad. A bigger red flag to the FII bull that follows the pathway.

If we explain about PEM and education this is a final straw as this cost too much money and you are accused verbally they follow the pathway and draw in Social Services.

There are no doctors who are listened to that can stand up for us. You only have to look at the history of Dr Speight and how he is treated.

I have been going around in this endless circle for 5 years and I'm one of the younger ones. I don't see that this will ever end unless Doctors, NICE, GMC and ministers are held accountable and that is not going to happen.

A biomarker will help but that is going to take longer than my son will be in education so from the age of 8 to now 25 we will fight this and then we have PIP.

This is the hidden reality. It does not make for a good news story or program because it is unfair but not eventful enough.

 

You don't need to analyse members of focus groups saying we want more wheelchairs or we want better painkillers. That is all this is about. It may be a legitimate response to a request for involvement but it seems so poorly thought out that I doubt it will have any influence on anything.

 

Sadly you can get chucked out of education at 16 here, and many are.

 

Latest communication from Royal College of Physicians, extending deadline to 3rd May.