(Scotland) North-east family speak of ME ordeal

Dolphin

Dolphin

Senior Member (Voting Rights)
North-east family speak of ME ordeal

January 30, 2018

https://www.pressandjournal.co.uk/fp/uncategorized/1402870/exclusive-north-east-family-speak-of-me-ordeal/

They are presumably talking about Esther Crawley's service

“There is a clinic in Bath which helps English kids, but there is nothing in Scotland and that is why we need greater help from the medical profession and from politicians in the area.
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Labour’s Lewis Macdonald said: “This is a distressing case. A young person who should be full of life and energy is not and it’s really important to ensure she gets the best possible treatment to deal with her ME.

“That might mean referral to expert help, for example the clinic in Bath, if she cannot access the support she needs here in Grampian.

“The sooner this is sorted, the better quality of life she will have in the years ahead.”
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The hospital did a blood test and said she had ME. What blood test would that be?

I forget, but was there not something about Greek tragedies where the Gods will give you what you want, but only in a way which you do not want it?
 
I assume the blood test was the usual standard tests that find nothing so it must be ME...
I hope our Scottish friends will be getting in touch .with that MSP and newspaper. They really need to be informed about Crawley before it's too late for that child.
 
Trish said:
I assume the blood test was the usual standard tests that find nothing so it must be ME...
I hope our Scottish friends will be getting in touch .with that MSP and newspaper. They really need to be informed about Crawley before it's too late for that child.
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I've contacted Tymes Trust, will tweet MP with link to harms done by Bath clinic and have left a comment on Press and Journal page - it may be worth adding more comments with links to paediatric primer and online commnities
 
Amw66 said:
Internet not available in Aberdeen?
This was my take whrn first diagnosed- had i been offered this, not knowing the potential side effects, i would have bitten someone's hand off.
Parents forum and PR were found after damage was done .
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Hi Annie,
This is frightening, maybe she is in touch with AfME, who seemed to be trying to get more "services" in Scotland. They are supposed to have something like a mentor scheme.
So hard to know how to reach her. Attempts to send info via MP, or even trying direct if we could locate address would be twisted to "demonstrate" our militant vexatiousness and harassment!

Is this possibly something Emma S's Mum could help with, or could we send something to the MSP? Maybe a copy of that article from a scottish paper from a few year's back re that youngster severely affected by GET stuff.

Do PM or email me if I can do anything (eg explain re NICE tearing up and starting again/Mark Baker being shocked how the Guidelines could be used and then people seriously deteriorating.) I was at the mtg
 
MEMarge said:
Hi Annie,
This is frightening, maybe she is in touch with AfME, who seemed to be trying to get more "services" in Scotland. They are supposed to have something like a mentor scheme.
So hard to know how to reach her. Attempts to send info via MP, or even trying direct if we could locate address would be twisted to "demonstrate" our militant vexatiousness and harassment!

Is this possibly something Emma S's Mum could help with, or could we send something to the MSP? Maybe a copy of that article from a scottish paper from a few year's back re that youngster severely affected by GET stuff.

Do PM or email me if I can do anything (eg explain re NICE tearing up and starting again/Mark Baker being shocked how the Guidelines could be used and then people seriously deteriorating.) I was at the mtg
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I sent Janet Sylvester the twitter link this morning when it first came in, and I've contacted TT
 
MEMarge said:
Attempts to send info via MP, or even trying direct if we could locate address would be twisted to "demonstrate" our militant vexatiousness and harassment!
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Maybe it's time to say with self-confidence it's ok to stand up for one's goals, and that that by itself is not militant but determined. Which, in everyday life, always seems to be desirable.

It's a just a thought...I wondered why "they" can say anything, and we accept that game and try to justify ourselves. There was a coaching technique - if someone states something about you, e.g. you speak too loud, and if that critique isn't justified and isn't neutral, you don't project that on yourself, but mirror it back, e.g. by replying "why do you have the impression that you speak too loud?" or whatever...
 
I see what you're saying @Inara, but in these cases the families could be punished by our actions.

These guys like to isolate their victims and claim the reasons the families don't just comply to the demands of the authorities is because they have been mislead by militant activists.

We need to figure out a way to engage which won't make things worse for the family and feed into this whole militant activist scenario.
 
Inara said:
You're right, @Invisible Woman, I had other people in mind, e.g. protecting families who are too afraid.
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Also:

I dont know the Scottish system, but in England, if it goes to family court stage, the proceedings happen behind closed doors. Sometimes parents aren't even made aware of all of the allegations against them. Sometimes they aren't given the chance to even give their side of the story. It's almost impossible to prove whether an injustice has been done because it's all so secretive.

The authorities hold all the power.
 
Inara said:
Maybe it's time to say with self-confidence it's ok to stand up for one's goals, and that that by itself is not militant but determined. Which, in everyday life, always seems to be desirable.

It's a just a thought...I wondered why "they" can say anything, and we accept that game and try to justify ourselves. There was a coaching technique - if someone states something about you, e.g. you speak too loud, and if that critique isn't justified and isn't neutral, you don't project that on yourself, but mirror it back, e.g. by replying "why do you have the impression that you speak too loud?" or whatever...
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Maybe the opportunity to stand up to the BPS mob will be at NICE Guideline Committee sessions.

Presumably the chair or 'facilitator' will not allow lay members, or others who know that Biomedical Science is more relevant than BPS mobspeak, to be silenced.
The downside is, that these members will undoubtedy have to endure the mob, spouting their version of reality, without exploding!
 
Invisible Woman said:
The authorities hold all the power.
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There is still a law (in theory I confess). The authorities have very much power, something I experience, too, but they can't allow to act too obviously against it. Companies and governments can do that.

In law, again theoretically, each party has the right to speak and to be heard. If that was ignored, the case has to be started anew. If there is a legal case, things will become public, or else the judge can't build a judgment.
I know that reality is something different, and that judges can act according to politics, according to what is expected from them, not according to law. And that we normal people simply don't have the financial means to go "all the way".

I know the situation is not easy. I know it from my sister, and there might arise something like that with another family member and her child. One has to try everything, and one has to act, not only react. I would always advise to get a lawyer in this case - it's about the child! Information and community are important.
 
Family court here is different @ Inara. There's how it should work and how it actually does.


Systems originally put in place to protect the child twisted against the family.

A friend had a relative (a highly qualified nurse) who went through almost 2 years of hell because of an unexplained bruise on her child's leg. She almost lost her child, job (because being a nurse you work with vulnerable people) and custody of her other kids was threatened. The bruise was caused by the car seat/carrier.....

Look at the behaviour of social services and the psychiatrists in Sophia Mirza's case....and she was an adult:

http://sophiaandme.org.uk

Look at Karine Hensen....

Now think if you couldn't see or hear of any of the details because all proceedings were closed, or behind doors.
 
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