Informed Consent

[Tilly]

It is good to ask questions and make it as clear as possible.

The Social Services are being reviewed and I am not sure they realised the enormity of the problem and ME is not the only complex condition that is being targeted the Autistic society are aware of the issues and the problems which is not ideal

Family Courts are known to have problems too and rely mostly on community paediatricians 101 things to say about that too but we need to focus on the issues of ME.

In most cases young people are denied advocates, and anyone who supports them against all the legislation and the laws are taken down to.

The second issue with Advocates is that they are mostly given the title of independent but are paid by the LA. There is no one who is truly independent working for the YP and they may never meet their solicitor.

There is a statutory framework for provision of children's independent advocacy, England but who is making sure it works for the children? There is no scrutiny and no redress when things go wrong.

As an Advocate with 8 years experience I know more about the legislation law and what a Social Worker should do than almost all those in the industry.

If the information is wrong and there is no accountability, scrutiny and transparency, with full control in the hands of the services backed by the LA it does go horribly wrong. You think the PACE trial or the way Prof Crawley behaves is bad you have not seen anything until you sit in a child Protection meeting or a family meeting with those who quote the research to young children or young people and blame the parents.

So what has this got to do with ME research? NICE? and this platform?

EVERYTHING!

Social Services and the Courts rely on the research and the guidelines and those community paediatrics that are so called "court experts". No research into outcome means lack of understanding.

You only have to look at the MAGENTA (effectively a PACE trial) SMILEtrial stand on a sheet of paper and shout STOP it secret and blame the parent and FITNET which involves the mother being part of the treatment and I guess now CLoCK. Disability is not seen as a child needing support now, but as a child in need of protection from parental abuse. Those trials in conjunction with the research in FII, which is hidden with excuses that do not stand up. You just have to look at Roy Meadows and the rights of the mother taken away to protect the child if you read the evidence and reasoning put forward too many common colds and taken to the DRs means FII. We are back to research touching those with ME that are not directly to do with finding what or how to treat ME. When you look at children's research you have to know all the implications both Health Education and social care including court.

We have to start putting back trust in family and mothers in particular and make that lived experience part of the research. Now researchers of old may find that difficult but I bet you anything that if research was done in mother verses medical opinion, mothers will out strip medical professionals; just look at the disasters in avoidable deaths such as Sepsis for example or birthing problems. The harm caused by celiac disease, lactic acid, EDS Mast Cell the list is endless. However if they worked as a partnership they would have the most effective medical service in the world. What makes me certain of that?

Because it is the mothers that protect young people with ME (and all other perplexing presentations),they sort in to groups of who is best to see what conditions need attention and if they had been listened to in the very beginning we would not be in this mess. Look at the historical evidence and you will see a common pattern of the mothers voice being ignored.

When you have a supportive GP, backed by the community Paediatrician who is willing to listen and able to ask for consultants, you get the best outcome and lived experience. However this is not being recognised and sadly it is depleting due to the professional dismissing the concerns of the mother as hysterical read the outcomes of the case studies and the interviews of the problems where only the father is taken seriously,. Sadly the research which is never investigated and is left to continue on Fabrication or Inducing Illness, which anyone can accuse the mother of, is left to grow and it does impact on young people with ME and it needs to be taken seriously.

So research into 100 mothers or so who have children/young people ill for 12 months or more what have they found.

100 mothers with young adults who have been ill since they were 8-15 and are now 20+ what have they found.

100 mothers with adults now still ill from when they were young what have they found.

We would see clearly what this illness is capable of, how they struggle and what needs to be done.

Longitudinal studies with reflection without the bias of professional opinion or target funding it would give us a lot of information we have never examined, such as what have mothers tried, what has helped and what comorbidities are most common and what needs to be done in covid times.

I do wonder why this has never been undertaken and I can only guess to why.

And just in OFSTED have refused to accept the findings of Josh McAlister review and have said there were too many child protection investigations.

That they will look "more deeply" into the misrepresentation of legislation and that Social Workers and families cannot 'meaningfully contribute' contribute to Care Review and that cross-agency responsibilities for child protection, especially in relation to section 47 (most Social Workers jump to section 47 without a section 17; which is to find the need of the child but is dismissed along with diagnosis's when an accusation of FII is made. A community Paediatrician looks at and all diagnosis and are able to dismiss them against all protocols. I believe there is no such diagnosis code for FII and as i understand it has no foundation on which to base it on. However there is a huge effort to fund clinics to take women into to research into FII. They seem to use "you will get your child back" as an incentive.

At the moment mothers are being told they MUST wake their child up at the same time every day and make them do daily tasks to get them out of the deconditioned state they are in. Now with the new perplexing presentations and the need for research into FII in special clinics, I think we can all guess to where the research will be taking us

 

[Sly Saint]

Defining consent
For consent to be valid, it must be voluntary and informed, and the person consenting must have the capacity to make the decision.

The meaning of these terms are:
voluntary – the decision to either consent or not to consent to treatment must be made by the person, and must not be influenced by pressure from medical staff, friends or family

 

[Peter T]

So what has this got to do with ME research? NICE? and this platform?

EVERYTHING!

Social Services and the Courts rely on the research and the guidelines and those community paediatrics that are so called "court experts". No research into outcome means lack of understanding.

You only have to look at the MAGENTA (effectively a PACE trial) SMILEtrial stand on a sheet of paper and shout STOP it secret and blame the parent and FITNET which involves the mother being part of the treatment and I guess now CLoCK. Disability is not seen as a child needing support now, but as a child in need of protection from parental abuse. Those trials in conjunction with the research in FII, which is hidden with excuses that do not stand up. You just have to look at Roy Meadows and the rights of the mother taken away to protect the child if you read the evidence and reasoning put forward too many common colds and taken to the DRs means FII. We are back to research touching those with ME that are not directly to do with finding what or how to treat ME. When you look at children's research you have to know all the implications both Health Education and social care including court.

We have to start putting back trust in family and mothers in particular and make that lived experience part of the research. Now researchers of old may find that difficult but I bet you anything that if research was done in mother verses medical opinion, mothers will out strip medical professionals; just look at the disasters in avoidable deaths such as Sepsis for example or birthing problems. The harm caused by celiac disease, lactic acid, EDS Mast Cell the list is endless. However if they worked as a partnership they would have the most effective medical service in the world. What makes me certain of that?

Because it is the mothers that protect young people with ME (and all other perplexing presentations),they sort in to groups of who is best to see what conditions need attention and if they had been listened to in the very beginning we would not be in this mess. Look at the historical evidence and you will see a common pattern of the mothers voice being ignored.

When you have a supportive GP, backed by the community Paediatrician who is willing to listen and able to ask for consultants, you get the best outcome and lived experience. However this is not being recognised and sadly it is depleting due to the professional dismissing the concerns of the mother as hysterical read the outcomes of the case studies and the interviews of the problems where only the father is taken seriously,. Sadly the research which is never investigated and is left to continue on Fabrication or Inducing Illness, which anyone can accuse the mother of, is left to grow and it does impact on young people with ME and it needs to be taken seriously.

So research into 100 mothers or so who have children/young people ill for 12 months or more what have they found.

100 mothers with young adults who have been ill since they were 8-15 and are now 20+ what have they found.

100 mothers with adults now still ill from when they were young what have they found.

We would see clearly what this illness is capable of, how they struggle and what needs to be done.

Longitudinal studies with reflection without the bias of professional opinion or target funding it would give us a lot of information we have never examined, such as what have mothers tried, what has helped and what comorbidities are most common and what needs to be done in covid times.

I do wonder why this has never been undertaken and I can only guess to why.

And just in OFSTED have refused to accept the findings of Josh McAlister review and have said there were too many child protection investigations.

That they will look "more deeply" into the misrepresentation of legislation and that Social Workers and families cannot 'meaningfully contribute' contribute to Care Review and that cross-agency responsibilities for child protection, especially in relation to section 47 (most Social Workers jump to section 47 without a section 17; which is to find the need of the child but is dismissed along with diagnosis's when an accusation of FII is made. A community Paediatrician looks at and all diagnosis and are able to dismiss them against all protocols. I believe there is no such diagnosis code for FII and as i understand it has no foundation on which to base it on. However there is a huge effort to fund clinics to take women into to research into FII. They seem to use "you will get your child back" as an incentive.

At the moment mothers are being told they MUST wake their child up at the same time every day and make them do daily tasks to get them out of the deconditioned state they are in. Now with the new perplexing presentations and the need for research into FII in special clinics, I think we can all guess to where the research will be taking us

In relation to children with ME, particularly in those geographical areas where child protection cases are more frequent in relation to families rejecting GET/CBT, is full and free informed consent even possible?

For consent to be fully informed families need to know the risk of social services involvement if they reject the treatment, but having this knowledge then precludes any consent being free.

 

[Tilly]

In relation to children with ME, particularly in those geographical areas where child protection cases are more frequent in relation to families rejecting GET/CBT, is full and free informed consent even possible?

For consent to be fully informed families need to know the risk of social services involvement if they reject the treatment, but having this knowledge then precludes any consent being free.

Sadly those geographical areas are increasing due to the teaching of Professor Crawley and Dr Glaser.

Full and free consent is not possible because

If you mention any of the information it is a red flag for FII
If you refuse treatment you are classed as obstructive and that is another red flag for FII
Social Services look at disability as abuse or a choice

This is now being rolled out over the UK

 

[Daisymay]

I would not want to add a suggested information sheet for GET to the guideline. However, thinking about it one might suggest adding an information sheet template for any physio programme for ME, indicating the information that would be minimum for informed consent.

So one could start considering what such an information sheet should include.
Perhaps to start with it should include a statement indicating that we have no reliable evidence either way as to what sort of activity level should be recommended but large numbers of patients have found that limiting activity in a pacing format serves them best.
I think the sheet should also include a statement that the evidence for using incremental or increasing activity/exercise as a way to recovery is not supported by any reliable evidence, with trials tending to suggest that there is either no benefit in terms of being able to do more or too little benefit to be worthwhile. Moreover, large numbers of patients report being made worse by exercise programmes.
It could include a statement about increasing activity for patients who feel well enough to do so, as a plan for returning to nearer normal activity once well enough, which might also include cautions about patients experiencing worsening if they do not take things very carefully. (In other words that feeling well enough may not be enough to be sure relapse wi not occur with activity.)

I don't even know if any of the ME service departments have information sheets at present.I guess maybe they do. It might be fairly easy to demonstrate that they are not providing adequate information for informed consent.

Should these also not be included in any information sheet?

1. there is biomedical research showing energy production abnormalities and PEM in ME patients and the implications of this if they undertake GET

4. patients need to be informed of the rationale behind the use of the CBT/GET. They are not used as supportive therapies to help patients cope with and manage a serious physical disease. For ME CBT is used to change the behavioural and cognitive factors assumed to be responsible for the perpetuation of symptoms and disability, whilst GET is used to correct the assumed deconditioning and exercise intolerance caused by these assumed wrong cognitions.

 

[Jonathan Edwards]

Should these also not be included in any information sheet?

1. there is biomedical research showing energy production abnormalities and PEM in ME patients and the implications of this if they undertake GET

4. patients need to be informed of the rationale behind the use of the CBT/GET. They are not used as supportive therapies to help patients cope with and manage a serious physical disease. For ME CBT is used to change the behavioural and cognitive factors assumed to be responsible for the perpetuation of symptoms and disability, whilst GET is used to correct the assumed deconditioning and exercise intolerance caused by these assumed wrong cognitions.

I don't think we have research that shows energy production abnormalities that can be reliably translated into clinical implications. Everything is tentative and indirect.

If GET and ME/CBT are not to be recommended then the rationale would not arise.

 

[Daisymay]

I don't think we have research that shows energy production abnormalities that can be reliably translated into clinical implications. Everything is tentative and indirect.

If GET and ME/CBT are not to be recommended then the rationale would not arise.

Yes but can patients not be told there is tentative evidence of energy issues?

And is there not sufficient evidence of PEM, IOM thought so?

 

[Daisymay]

I don't think we have research that shows energy production abnormalities that can be reliably translated into clinical implications. Everything is tentative and indirect.

If GET and ME/CBT are not to be recommended then the rationale would not arise.

Sorry I forgot to say all the best for the RT tomorrow and thanks very much for all your work.

 

[Jonathan Edwards]

Yes but can patients not be told there is tentative evidence of energy issues?

I think this just confuses things. If you start talking about energy issues to physio they will think up all sorts of reasons why you should do this or that or the other. The real problem is that therapists cannot help themselves inventing theories and rising them without any justification. We need to get right away from that and base care directly on patients' experience and common sense.

I get the strong impression that a lot of patients are misled into thinking they should do this or that for reasons to do with energy and I doubt there is any basis for that.

I am afraid I don't put a lot of store by what a group of people at IOM think.

 

[Kitty]

Yes but can patients not be told there is tentative evidence of energy issues?

I think we should expect them to tell patients what is known, without trying to explain what isn't.

We know that ME patients say they can't do nearly as much activity as before they got ill, or sustain it for as long. That it takes much, much longer to recover from activity, and that if they don't allow enough time for this, their symptoms get worse. And that this is a major impairment.

Until the cause is known, clinicians need to focus on advising patients how to ease their symptoms and avoid making them worse, because that's the best they can offer.

all the best for the RT tomorrow and thanks very much for all your work.

Hear hear!

 

[Tilly]

I think this just confuses things. If you start talking about energy issues to physio they will think up all sorts of reasons why you should do this or that or the other. The real problem is that therapists cannot help themselves inventing theories and rising them without any justification. We need to get right away from that and base care directly on patients' experience and common sense.

I get the strong impression that a lot of patients are misled into thinking they should do this or that for reasons to do with energy and I doubt there is any basis for that.

I am afraid I don't put a lot of store by what a group of people at IOM think.

PEM is recognised and must be accepted if we are going to move forward with understanding or research.

I do not understand why you have such a problem with the 'energy' issue or put another way PEM. Due to lack of understanding or wilful negligence on behalf of the medical profession or research in the UK, it is clear that if a person can not look at a TV, listen to music or do anything without ending in a PEM state, then their energy to enable the body to do these things are impeded. Even if it is fighting off symptoms, it takes energy to do so. It is an inability, for what ever reason to sustain that energy to enable activity of any kind, to have any form of living, wellbeing or otherwise.

The lack of recording of "Non Events" due to PEM such a Sophie, Clair, Meryl, and now a new victim at 27 how many more, we just don't know. Not to mention Gigi, Ean Proctor and thousands more like them harmed by lack of understanding the gut, brain, connective tissue and mast cell. All should be recorded as an "non Event" so that we can track what happens. If we do not point out in some way that the lack of ability is not the patients fault and less ability to sustain any level of living, then how are we ever to understand this disease. Harm due to lack of care and understanding PEM and not just proven by research has to be recognised. If we do not try to understand PEM at a GP, physio or OT then we are never going to know what the hell this illness is.

When parents know no better and are told to ignore their child's distress due to PEM then that GP. Physio, OT are responsible.

Parents trust GPs, hospital and leading researchers that don't/wont accept PEM or deny PEM. It is not hard to measure is it. If you read a book on day 1, have a delay of 48 hours and then suffer increase in symptoms then you record PEM and how long that lasts. You do more activity before the recovery then you impact on PEM and further symptoms occur and you record deeper PEM. The first day the child wakes up earlier is more able and more comfortable is when PEM is in decline. You record BP, HR oxygen and you start to see a pattern and the problem.

The child is not listened to, has gastro problems and mast cell along with fighting to stay upright the child is left alone frightened. They go in walking and come out bedbound to the care of a GP. They are so traumatised they never go back to the doctors and so left to fester for decades or all their adult life. The hospital or centre record that they have treated successfully when the child is in a much worse state and march on to next young person.

However children go into hospital and centres that don't record decline, PEM, HR, BP oxygen levels. Mothers are the only ones that understand PEM and they are targeted by the research so we never learn because we have to hide knowledge and we are never encouraged to engage with researchers.


If you had the data of non events Jo, or data that parents have collected what would you make of it? If gastro infection parasites etc, gastropareses, more flexible joints, POTS, Mast Cell/histamine intolerance, BP HR oxygen rates would that be enough to look deeper? Because for decades this is what parents have been understanding, but no one is listening. Why?

 

[Mithriel]

The results from the 2 day CPET testing of ME patients are stunning because it is the first repeatable test which shows a different, consistent, response in ME patients from healthy controls. This means there is something going wrong in our physiology and points to the direction of where the base cause of the defect lies.

I like the Workwell theory of damaged aerobic cellular respiration because it has all the hallmarks of a good starting point.

The theory itself explains why there would be negative results. If patients are already in PEM they would not be able to show the same drop in performance for instance.

It answers wider questions about ME. For instance, the theory that we can't meet sudden energy demands would explain why we can have systems which test normal unless they are stressed.

From my own point of view I have found it explains many of my odder symptoms which are rarely discussed and I have use it to help me organise my life with more success than anything I've been offered in decades of disease.

The tragedy is that the test itself carries such a risk that it would not be ethical to carry out the large scale trials that would give it proper respectability and definitely not to use it routinely as a diagnostic aid.

It should be possible to use a less problematic test to see the effect and that is my hope. More physiological research may show exactly what is happening but it is the best we have so far.

 

[Jonathan Edwards]

it is clear that if a person can not look at a TV, listen to music or do anything without ending in a PEM state, then their energy to enable the body to do these things are impeded.

Sorry but it we want to get anywhere with the science we have to stick to meaningful scientific concepts rather than just what it feels like. The subject concept of energy has nothing to do with energy in scientific terms. What I think should be avoided is interpreting scientific studies like CPET as telling us something about the subjective sense of energy.

Over-egging the scientific data is one of the main reasons that patients' voices have been ignored.