I think Matthew Hill understood the situation very well. After all he is a veteran of ME related coverage. I will give him the benefit of the doubt that his inclinations are likely in the right direction, but I sense he was being limited in what he was allowed to say. That being so I felt not only did he sadly pull his punches, but if anything was to be found languishing in the corner with a towel over his head (in my opinion at least). That old Edmund Burke chestnut, "The only thing necessary for the triumph of evil is for good men to do nothing". Hill might be a good man but we know the calibre of the people with whom he spoke and so we know he will have been given chapter and verse on what really is happening with these children. There is no doubt about that. So we have two points in time: i) where he acquires good evidence of truly awful crimes against innocent children and their families and ii) where he fails to disseminate that he knows this stuff. It's up to us to judge. If he has the cahoonas he'd 'go rogue' on social media and break this open. It would make his name, but also sadly probably lose him his job.
2nd long rant , sorry folks!
There are many points you make here
@lilpink that I have been thinking myself.
I fail to see how any journalist could have interviewed all the people Hill has interviewed, including parents and children and not see the way ME patients have been treated as anything other than an outrage, and scandalous and a gross injustice ( unless they are from the Mail or Express of course) and feel personally enraged at the injustice and want to expose it in its entirety. In my opinion that did not happen, a long way from it. Hill seemed quite impotent to me.
My guess ( though I may be entirely wrong) is that more senior editors and others have the final say and much of it was watered down or neutralised.
I do understand and can relate to a lot of the positives
@Barry53 @trishrhymes @MEMum and others are saying. I do see where you are all coming from you make good points and it is a step in the right direction moving from a gross bias towards the BPS lot to, well a more neutral position.
However, we as a community have been facing this gross injustice for decades now. The injustice is perpetuated by a gross imbalance of power where our voices and those of people who support us have been deliberately drowned out and ignored. The BBC have unfortunately been part of that up until now.
When such an imbalance of power occur, in my opinion, one of the jobs of serious journalists is to expose it and to give the disempowered a voice. This to me does also involve exposing not only the extent of the injustice and harm , but exposing those who are doing the injustice and harm and exposing the myths, lies and power dynamics which allow this to contiue. This was not done.
I know it has been mentioned by
@charles shepherd and
@Barry53 that this was for the general public rather than ME community. I would be interested in the impact it had on the general public. I have not noticed any comments on social media, other than from ME folks. I do wonder if it has had any impact on the general public, I feel that it is not enough, but then the general public has lots else to take their attention at present.
I try to put myself in the position of someone from the general public who does not know anything about ME. I try and put myself in the position of a school nurse or Head Teacher or social worker listening to the programme and for me, it would not leave me any clearer on the true nature of ME and whether it is psychological or not.
I feel many people who deal with Child protection day in day out as part of their jobs will still be left very unclear by this programme. Yes, they heard how upsetting it was for parents and their children to go through child protection investigations, but many will know and understand this anyway. All parents deny allegations of harm or neglect so what makes these parents different, how do we really know that they are not making it up? ( This is me trying to think as others I have worked with may think by the way, not my own opinion)
If the programme had given interviews from Ron Davis, Nigel Speight and time to outline the direct scientific evdience behind the disease, the UN classification, the IOM report on ME then as someone who knew nothing of ME or was quite ignorant of ME, I would have come away re-educated and understanding the seriousness of ME and that it is a genuine physical condition.
But as the programme was, I would not have come to that conclusion, I would have been, yes these poor families, but we still don't know if ME is real or not, all in their heads and psychological because no one has given us proof otherwise and the journalist seemed to be sitting on the fence as if the jury is still out on this one.
What came across to me is that ME is an illness little is known about and for which there is no scientific evidence, and it may well be real but we just don't know. And if GET works for some, like the lad then it can't be all bad and perhaps the others were not trying hard enough.
We have so much evidence now showing the biological abnormalities in ME which is proof of its physical nature and also proof why GET is so harmful to many, this could have been nailed down once and for all in this programme, but instead, the debate around its psychological opposes physical nature is allowed to continue. In my mind, this needed to be challenged and challenged very strongly in this programme and wasn't.
People need to be shown or told the science not just an opinion. I say this from my previous experience in my work with children and young people in schools and social care.
In working with many kids who had been abused and neglected and who suffered grief, PTSD, nothing, nothing I could say had more impact with professionals working with these kids, ie teacher, health workers, social workers etc than showing them the neuro- science behind what was happening for these kids, why they were affected and behaving the way they were. It was always a light bulb moment for people and their attitude, understanding and sympathy for those children could do an abrupt u-turn over night.
That in my opinion is what the listeners need to know, in order to understand and in order to form an informed opinion and shut down this rediculous BPS model of our disease for good and I felt it was sadly missing.
Like
@lilpink mentioned about good men doing nothing, this has been my thoughts since last night. People and organisations who sit by or sit on the fence not wanting to get involved or take sides is contributing and in my opinion 'enabling 'abuse, medical neglect and harm to continue. This attitude does not redress the huge power disparity but allows it to continue.
I sincerely hope that the BBC do a more full and hard hitting follow up and take it upon themselves to properly educate the public about our disease and the injustices we have suffered because part of their remit is public education.
