Moved posts If CBT worked then it would have worked with education and brain training with intelligence in the UK going up, it hasn't CBT for Externalizing Behaviors: A Multi-Tiered Approach (wsasp.org) where do they get the research from? The fact is it does not work in any setting the most it can do is stop young people speaking out and from asking for help by convincing them to be heroes and not talk about disability in any form. If as a parent you use the term disabled and you are labelled as Fii emotional harm. Yesterday Chris Whitty announced that all children including disabled children will have 20 mins aerobic exercise 3 times a week. New guidelines to support disabled children to be more active - GOV.UK (www.gov.uk) where did that research come from and what does it mean for ME? Well they brought in parents and children to take part in the guidelines so now it is written in stone and it will be used against all parents well it is already. We know what happens with that. Pastoral care and CBT with Social Workers using the D Glassier model and research with research on MUPPETS. Police have been brought in and they are not allowing section 17 child in needs assessments (LA have got rid of all their assessors - design or money ?) and disability is now looked at as abuse because having a disability does not mean you are disabled and parents have to stop using that term D Glaser research has proven what exactly? Children are safer? No, has any disabled child been killed if so how many why and how? How many parents with disabled children are falsely accused and were is the research? Foster care is now a big business and needs continual growth, so they need more children. this seems to me a system design based on the best evidence on robust research is there for a purpose and it in not to support or protect children. Tilly Moments: How Have We let This Happen Again? Forced Adoption I was asked by an adoptive parent "my child has just been diagnosed with EDS how can I get help and support what do I do next?" what can you say? No research means they don't have to treat or recognise the problem. No figures are kept about adoptive children and their background medical history. One young person has had their antivirals taken away and are now struggling unable to attend education. One young person near to death denied lifesaving treatment because we cant do that it does not say that in the guidelines or we don't have to do that it is not in the guidelines. All have FND apparently How does that happen? All are undiagnosed as they should be and just left to fester quietly.
MAKING SURE RESEARCH WORKS AND THAT THE PUBLIC ARE PROTECTED ! If research produced 1,339,789 false positives impacting on our children should we take it seriously? Unchecked unaccountable. Is is about time someone started to listen to ME? FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services? | The British Journal of Social Work | Oxford Academic (oup.com) RCPCH would not accept the ME Guidelines what is happening to our children now? There is more to come out about how bad research harms our children. Enough to say behavioural science has infiltrated more than health, it has done so with education and social care. I have not had time to write up on this as meeting after meeting I listen to the horror of our young people with perplexing presentations that are silenced with no action or understanding of how bad science fabricates and weaponises mental health especially on women/mothers.
I was also worried when I saw this, particularly given what is happening with rates of Long Covid in children at the moment. Are these issues going to continue to be ignored? It is insulting and dangerous. Business as usual. https://twitter.com/user/status/1493875891008647171
And of course all disabilities are all the same, and so every reason to assume they can all be treated the same ... NOT!! [my bold] How narrowly scoped is that evidence?
Have these people never met children? Most are constantly running around, already have plenty of physical activity during lunch hour alone, certainly above a ridiculous target of 20 minutes. Then there are recesses, physical education and just generally living. This is what performative alternative health care looks like: all about ticking boxes for the sake that those boxes need ticking.
Actually, children do not get enough exercise and exercise is vital for good health for humans. We evolved to be active in our normal lives, though exercise for the sake of it is a modern invention because our lives are so different from paleo times. It is important we do not argue against exercise per se. The problem is not that exercise is wrong but that we have a medical condition that has damaged out energy producing system. It is a tragedy that we cannot experience the health benefits of a normal active life on top of the burden of ME itself. A bonus to emphasizing this is it might make it easier for doctors to understand that we have problems from talking and eating not what is called exercise - we are not trying to get out of jogging! If exercise is being prescribed for everyone it is vital that we find a way to change to way ME is considered a "nondisease" or a moral failure.
There is a huge public health problem in the UK, where sedentary behaviour and massive calorie intakes are causing an epidemic of avoidable disease. Number of children getting enough physical activity drops by 40% "The number of children meeting the recommended amount of physical activity for healthy development and to maintain a healthy weight, which is 60 minutes a day, drops by 40% as they move through primary school. A new survey from Public Health England (PHE) and Disney looking at the effects of physical activity on children’s emotional wellbeing, found: being active made the majority of 5 to 11 year olds feel happier (79%), more confident (72%), and more sociable (74%), according to their parents nearly all children said they liked being active (93%) the main motivations for kids to be more active was having friends to join in (53%) and having more activities they liked to choose from (48%) children’s overall happiness declines with age; 64% of 5 and 6 year olds said they always feel happy, compared to just 48% of 11 year olds 19% of children said they were less active due to a lack of sports or activities they enjoyed " Observational analysis of disparities in obesity in children in the UK "The most recent data from the NCMP (2016/17) show that 9.6% of children in England are affected by obesity on starting school"
Yes but what is the point of providing 'activity guidelines' when the government you work for has no interest in reducing sales of high sugar foods, has encouraged schools to sell off recreation areas, has eaten in to physical activity time with curricular regulations, made life so soul-destroying for teachers that like my daughter they have left to do other jobs and so on and so on? The problem is obesity and I doubt that is affected much by the provision of activity opportunities. 20 minutes every day sounds a nonsense to me. By the time kids have got changed it will be five minutes. Why not fund schools properly and let them provide real activities? And how does a mindless target help the disabled - goodness knows.
I was particularly disturbed by the focus on "disabled" children. Why couldn't they just say that most children should be doing some physical activity? This was about "disabled children" exercising. How does this help disabled children in particular? And without offering a caveat about children (many of whom are disabled) who may be harmed by exercise, this is dangerous. It's not about being against exercise per se; the more exercise advice is used without any caveat as part of the government's efforts to shift everything about health to matters of personal responsibility, the more dangerous it is. The framing with reference to "disabled" children in particular is truly distasteful at best in my opinion; I saw this as quite political. Layers of it.
I worked for a time with very severely physically disabled children who had minimal voluntary control of movement and who required special equipment to be positioned comfortably even when lying on a bed or a mat. How are you supposed to perform aerobic exercise when you have virtually no purposeful movement?
Focusing on disabled children is the whole point, it's why the report was created in partnership with Disability Rights UK - their member organisations list: Member organisations includes AfME. Disabled kids often have a greater need to be given time/space for activity and to have additional support and resources to make that possible with individual need taken into account. The full report is here: Physical activity for general health benefits in disabled children and disabled young people: rapid evidence review , the comparable adult review is here: https://core.ac.uk/download/195283481.pdf and the population wide report is here: Physical activity guidelines: UK Chief Medical Officers' report There is no focus on disabled children beyond that which the Government is actually required to do under Equalities legislation. Of course much of this is just performative, the resources to make these recommendations real are not available and the underlying problems of UK society and politics mean that there are no easily available solutions to that. As much as I would like to, I don't think I could say more on that without breaching forum rules.
