Carol Monaghan asks question of Prime Minister in PM’s questions today 27th March

A few minutes ago, Carol Monaghan asked a question in the House about children ( with ME) being removed from loving families .

I didn’t get the whole of her question - sound was off and I had to quickly turn it up- but Prime Minister answered something to the effect that she wasn’t aware of this but would look into it.

Good for Carol to get this question asked in the current Parliamentary chaos.

ETA: could someone who tweets tweet our thanks to Carol for this?

ETA2: how else can this be used to progress our concerns?

ETA3: can those who have lots of followers on twitter especially send thanks so as to get this trending, (or whatever it’s called).

 

I saw it too. The question was about how children with ME are often taken away from their parents as a response to refusing to undertake GET. As you say, May did not know about the issue and promised to look into it.

 

https://twitter.com/user/status/1110883779554562049

 

I was in touch with my MP last week during all those awful features. He committed to talking to Carol.

ETA: am crashed and may disappear.

 

https://twitter.com/user/status/1110891152536932353


Utube of Carol’s question. Added advantage that the House is very full so question will have had wide exposure.

ETA: layout

 

I'm guessing Carol Monoghan's timing may not have been entirely accidental then , savvy lady that she is.

 

In view of the comments Carol made in her interview with Gary Burgess in the podcast on Monday, I have no doubt that she is fully aware of the publicity her Question will raise.

https://itunes.apple.com/gb/podcast/the-me-show/id1374903449?mt=2

 

Given the current turmoil, it also highlights how important these questions are, that they are worth asking at this time.

 

https://twitter.com/user/status/1110899455858012161


ah, the irony, MJW Esther Crawley supporter

 

And just like that, May has committed to stepping down if her Brexit plan is approved. So, without bringing politics into this, and understanding priorities, such as they are...well, I never have expectations when it comes to this sort of thing, although Monaghan has been tremendous. But I wonder if it sort of becomes like what happened with Obama some years back when Courtney Miller asked him a direct question, and he promised to have the situation looked into. The person he tasked that with was busy with the 2012 campaign and following the election left the administration...leaving a complete dead end, but he covered his ass as best he could (not that there'd ever be another opportunity like that to raise the issue with him directly).

I might just be a tad cynical though.

 

And frankly the absolute best angle. There are so many consequences to our circumstances that are hard to understand. Parents of sick children being accused of causing their child's illness is monstrous, nightmare-inducing for any rational parent who would wonder how that is even possible in this day and age.

Wessely once said this rarely ever happens, if at all. Maybe that's true, that most proceedings end up siding with the parents, but that's a damn weak justification for something that should never happen. And the failure rate would be indicative of a failed system. Things have to be extremely broken to get to this point, emphasizing how disastrous the status quo is.

Would be good to raise on the NICE committee. I think TYMES has the necessary info? I saw some tidbits in passing but haven't really seen a quick summary on how many proceedings happen. I think the accused are gagged as well?

 

Jane Colby of the Tymes Trust talks about the incidence of this closely related (and equally insane) issue, where paediatrician ME psychiatrists accuse parents of children with ME of causing their child's illness, and then reporting the parents to social services for child abuse.

I believe this reporting occurs in cases where the parents accept that the child's illness is a real biological disease, in contradiction to the paediatrician psychiatrists, who erroneously think that ME/CFS is an "all in the mind" condition caused merely by the child's belief that she is ill. So these crazy psychiatrists think the parents are encouraging the child's "illness beliefs" and thereby causing the ME.


At timecode 25:37 of episode 4 of this set of podcasts, Colby states that in recent years she has dealt with over 200 cases of parents being reported for the "child abuse" of believing that their kid's illness is real.

Note that there are two podcasts on the page named "episode 4", the Colby one is the second of the two. (Thanks to @Trish who originally linked me to that podcast).

In Medieval times, people believed that illnesses resulted from being possessed by bad spirits; these psychiatrists have similar backwards Medieval ideas: they maintain that illnesses like ME are due to having bad thoughts.

 

According to Thymes it happens to 20% of all families of children with ME. That is a huge number, we’re talking 5000 families (based on 25k children with ME in the UK).

 

Are you talking about kids with ME being taken away from loving families by the psychiatrist paediatricians, to be kept in a hospital or institution for coerced GET or CBT?

That seems a high percentage, but not implausible I guess. Would you a reference for that figure?

 

In my experience the school raised the question of legal action regarding ‘attendance issues ‘ after my son had been ill for 3+ years and he wasn’t improving on a schedule that suited their attendance targets. Fortunately we had good medical support so the threat was never mentioned again, but things continued to be difficult even tho said child was improving by then.

They came down very hard from day one when the second child fell ill, it took 3 months to get any support even though she was in an exam year. I’ll add that individual teachers who knew the children and us as a family were helpful, but the problem was with a particular member of senior management through their GCSES who didn’t want to listen and understand. 6th form was great, in the same school but different management.

I’ve never personally heard of a family that had a child taken into care, but certainly the pressure is there all the time. And that is just wrong, as is having to constantly fight for support and try and educate everyone around!

 

So do I understand that the paediatricians who were dealing with your kids' ME made hints or threats to you that they could take your kids away at any time?

Did you breathe a sigh of relief when your kids reached 16, which I believe is the age at which they can no longer be taken away without their consent?

Absolutely, every single ME patient or their carers has to go through this long and difficult process of trying to educate every around them, including their doctors sometimes, which can take years, and even then some don't believe you.