Please help Karina Hansen, severe ME patient, by signing these petitions! Video link included!

[maryb]

I don't think the mother has been at Karina's bedside for some months now. None of the family have been allowed to see her. Therefore one could say 'shouldn't there have been some improvement in Karina's condition if the psychiatrist and his team blame her illness on her mother?
that is the main question the authorities should be asked.

 

[tatt]

Petition to allow Karina to be seen by an ME specialist - please sign this one https://www.change.org/petitions/th...om-a-leading-me-expert-dr-nigel-speight#share

 

[maryb]

done

 

[justy]

Done.

 

[justy]

Done.

 

[COACH]

Please check out all the new information on Justice for Karina Hansen's facebook page and website. There is a new petition specifically to get her a second opinion. There is also a thunderclap to sign up for. On Feb12 Karina will have been held at Hammel for one year! She needs all of us to help her and her family get her the correct treatment. Here are some links to get you started. Thank you!
1. change.org link http://chn.ge/1itYO0i
2. thunderclap link: http://thndr.it/1nUTVRm

 

[Little Bluestem]

Where is Katrina's Website?

 

[COACH]

justiceforkarina. webs . com With no spaces though. My mobile device is not cooperating with me. Sorry.

 

[Little Bluestem]

In the meantime, Jens Gyring was contacted again and said that Karina should be asked if she wanted a visit. A new nurse joined our discussion and said: “I have just been in with Karina and said you were here, and asked if she wanted a visit, and she just shook her head". Very interesting that suddenly there was no ban, but now it was up to Karina...

Also interesting that the nurse just happened to go in and ask Karina if she wanted a visit before Jens Gyring was contacted again. So very convenient.

 

[taniaaust1]

This kind of thing is probably going on worldwide eg Brian too.

We can only be hearing about the tip of the iceberg here. How many are severely sick with ME and are locked away to be never heard of again? due to families not knowing they have ME or whatever. A bit a large percentage of ME people are never diagnosed with ME/CFS due to symptoms being seen as too severe (as much doctors think CFS is just about being slightly tired with a few minor symptoms and not about someone who just really cant get out of bed, has MCS (which many doctors wont believe) etc etc

There needs to be a fund set up or something set up to help people world wide in this situation.. Im all for secret safe houses if need be to protect people from those who should be reallly helping us but arent. (I'd hide someone in my home for a while if someone needed it in this situation). Just imagine the media outcry if someone did this and hide a ME person in another country to protect them (even hiding a child from this abuse).. maybe that is what we need to happen to gain media attention of this shocking abuse which is going on.

.........

I personally fear the same thing could happen to me as my condtion is slowly worsening due to lack of support of state disability service who wont recognise my ME/CFS and I have been long term bedbound with it before (but fortunately back then I had a child home to care for me). If my condition keeps deterioating due to constantly having to over do daily life stuff.. what is going to happen to me? I only have CFS specialists who believe ME is CFS and who arent even aware of the symptoms of ME. If things continue for me the way they are.. something is going to end up having to happen in my case! Are they going to recognise I need support for my ME or will I get locked up?????

I have been hospitalised before due to becoming suicidal and while I was there.. my ME was completely ignored!! I got threatened with being dragged out of bed for breakfast even thou I hadnt had enough sleep etc etc. Had I not been able to 'make out" I was fine at the time to excape the place.. I would of further deteriorated with my ME due to the mental health ward not being suitable for me. (no sound sensitive ME patient as I was at the time should be put right next to the patients recreation room where noise is coming from all day etc so one cant get the rest one needs). That place would of killed me.

The more I think about it.. the more I think I should be taking some legal steps now to try to keep myself safe in future.. I think should be signing something giving my CFS sister legal authority to make all medical decisions etc for me should I be deemed not sound to do so.

 

[taniaaust1]

That petition site..change org or whatever its called.. never allows me to sign petitions there as it wont accept my address (and I tried to put it in different orders etc without luck).
.............

OMG.. I just read she was given a diagnoses of Pervasive refusal syndrome and just looked up what that supposively is http://en.wikipedia.org/wiki/Pervasive_refusal_syndrome . Looks like the psychs are having a field day with thier new diagnoses.

PRS symptoms have common characteristics with many other psychiatric disorders. However, none of the present DSM diagnoses can account for the full scope of symptoms seen in PRS, and refusal to eat, weight loss, social withdrawal, school refusal can be considered as the main distinctive features.[7] Any system may be involved, however some more commonly engaged than others.[9]
Gastrointestinal:[9]

• recurring pain
• nausea
• loss of appetite

Neurological:[9]

• headache
• seizure
• motor dysfunction
• sensory dysfunction
• fatigue
• altered consciousness

Musculoskeletal:[9]

• joint pains
• muscle weakness

• umm so what is the difference between this new psych disorder and CFS diagnoses? anything? I think we all should be concerned about this new psych diagnosis.

Viral infections are repeatedly seen to be a factor in PRS; many cases are thought to begin with a viral infection. There have been other theories regarding the etiology of PRS, for instance, the psychodynamic theory of fatal mothering and a potential neurobiological role of the insula.[7] Von Folsach and Montgomery put forth four essential etiologic factors: (1) a premorbid personality, (2) a history of child psychiatric problems, (3) parental psychiatric problems and (4) sudden stressful events.[7] PRS children are typically known to be perfectionists, conscientious and high achievers. When these children are put in stressful events that they feel they cannot control, they go into a state of learned helplessness. Previous child psychiatric problems can designate a susceptibility to develop PRS when put in stressful situations, and parental psychiatric problems may influence the parents’ capability to support and care for their children.[7]

So the psychs have covered the viral infection angle too and that wont rule a person out.. created a new mental health disorder which starts with an viral infection.

Risk factors for PRS

Pervasive refusal syndrome is more prone in some people, these risk factors include:[10]

• Fragile X syndrome
• Maternal hypothyroidism
• Phenylketonuria
• prenatal drug and alcohol exposure
• prenatal viral infection (cytomegalovirus, herpes, measles, syphyilis, toxoplasmosis, etc.)
• sibling who has a pervasive developmental disorder
• Tuberous sclerosis

Very interesting that they are now blaming those things for mental health disorders!! This is soo crazy. Where are the psychs going too stop?

Im worried about the IOM stuff and now I see this.. very very scary.

Thompson and Nunn were the first to introduce diagnostic criteria for PRS in 1997. The current diagnostic criteria consists of:[7]

• A) Partial or complete refusal in three or more of the following areas: (1) eating, (2) moving, (3) speech, (4) interest to personal care
• B) Active and angry resistance to acts of help and support
• C) Social withdrawal and school refusal
• D) No organic condition accounts for the severity of the degree of symptoms
• E) No other psychiatric disorder could better account for the symptoms
• F) The endangered state of the patient requires hospitalization[7]

So in other words any severe ME person may fit all that as often those who are trying to help may be hurting the person who movement, light, sound or other things may be too much at times esp if the person trying to help dont understand at all.

I think this diagnoses should have its own thread for discussion so Im going to give it one. Anyway wanted to mention it here seeing I saw that is what they've decided to diagnose Karina with

 

[leela]

@taniaaust1 this is horrifying! very worrying.

Why don't they just rename psychiatry "Refusal to Acknowledge Self- Awareness and Autonomy in Fellow Humans Disorder."

 

[fizzyapples]

Hello,
Is Karina still being held in hospital?
This is horrendous but tragically not surprising as it's happening increasingly in the UK too.

I don't know what the system is over in Denmark but in the UK if a patient is sectioned they can have the support of an independent mental health advocate and/or a lawyer to take them to tribunals etc which is an opportunity to get her ME recognised (this is how Sophia Mirza came to be released - with a lawyer fighting for her rights and through the tribunals).

Also, if the diagnosis has been changed from MBP to PRS then Karina should now be allowed to see her parents. Because PRS diagnosis means the psychs now accept that the mother is not the cause of the illness.

I realise fully than Karina has very severe ME and not PRS, but if you're looking it from the psych's eyes, then a diagnosis of PRS means the mother is not the cause or maintainer of the illness and therefore Karina should now have full access to her parents - and her parents have rights to access to their child because the only time the parents rights get restricted is if they think she has munchaussens by proxy (MBP).
Therefore it should not just be about whether Karina 'wants' to see her parents - her parents have rights to access to their child.

This is important because Karina is likely to be very emotionally fragile now - she probably wasn't before she was admitted but the 'treatment' will have caused this - because she has been denied access to her family for a long time, whilst the reality of her illness being disbelieved and told is all in her mind - which in itself can be soul destroying when you are genuinely physically ill - which would be extremely damaging for an adult but for a young person even worse.

Because of this she may be so emotionally trodden that she feels depressed and alone - because of the 'treatment'.

Furthermore physically she could be in a severely ill state - I have very severe ME and I know that when I over-exert excessively for a long period my health gets so severe it reaches a critical level.

So, if there are parental rights legislation in Denmark her parents need a lawyer to help them exercise their right to access to their child.

Any previous child protection proceedings should be void or easy to break down because a 'diagnosis' of PRS means as I said the munchaussens by proxy is no longer the 'diagnosis', so therefore they do not consider the mother a risk to the child anymore.

The parents need to get access to Karina as should be their right so that they can ask her for themselves whether she wants to see them.

Do we know if the parents have a lawyer or if Karina has anyone independent acting on her behalf?

Just before I go I want to send warm thoughts and wishes and hope to both Karina and her family.

 

[leela]

Many fine thoughts, @fizzyapples ; FYI Karina is not a minor but a young adult.

 

[fizzyapples]

Thanks for the info @leela . I only just picked up this thread after newly joining.
As Karina is a young adult then she should have her own rights.
Do we know if she has a lawyer?
And do we know if Denmark has an independent mental health advocacy type service or a tribunals service - a service for patients and their representatives to contest the grounds for which they are sectioned (like they have in UK)?

Although this charity can only help UK residents (children), Karina and her family may find this document helpful:

http://www.tymestrust.org/pdfs/falseallegations.pdf

It is writing about children, but in young adults who are cared for by their parents it is almost all equally applicable.
And as MBP can be suspected in Carers (for example a husband who cares for his adult wife) as well as parents, this is also applicable to adults of any age.

For any ME patient and particularly severe ME patients who is suspected of - or 'diagnosed' with - having a mental health problem (such as pervasive refusal syndrome, or any other mental health label) or who is treated as iftheir diagnosed 'CFS/ME' is of psychological origin or exacerbated by psychological factors, this document is helpful.
It is also very useful for patients and for parents of child patients to use as support for declining psychological therapies and GET, and/or increasing school attendance where the child is too ill and/or other forms of 'activity management' - gradual increasing of level and amount of activities - this is normally applied to bedbound patients who are clearly unable to do exercise but they are told to increase activities of daily living that they can't do for themselves, on the presumption that it's not that you can't; it's just that you've got into a cycle of inactivity and assumed the 'sick role' and you need to break out of this. And on the assumption that the only reason you can't do things us because you're deconditioned and you can only improve by increasing activities of daily living progressively - despite exacerbation of symptoms.
Absolute bilge, but it's what most patients are advised - or in a very significant (and growing) number of cases forced - into doing.
The document at the above link should be helpful, if her family aren't already aware of it - and they're probably not as it's a new publication.

Best wishes...

 

[fizzyapples]

Just a final thought:
I would advise anyone who is fearful this may happen to them in future, to draw up an Advance Directive.
This can say how you wish to be treated in future if you are ever deemed to not have mental capacity - this can apply to any condition including neurologjcal conditions or other physically disabling conditions. it's used in the context for if for example you're unable to communicate because of vocal weakness.
And it's also used in mental health conditions (or alleged ones), and/or used if you are sectioned under the Mental Health Act (UK) - or in the case of other countries sectioned under theapplicable legislation for enforced treatment because you are deemed to have a mental illness.

You use this document to state how you wish to NOT be treated in future if you are unable to - or disallowed to by Mental Health or Mental Capacity legislation - make your own decisions about treatment.
You can say where you would not want to be cared for - ie you can say you don't want to spend long periods in hospital; you would rather be at home.

You can say what treatment you would not want. - so you can say for example that you would not want to have graded exercise or CBT.
You can say you would rather not take antidepressants.
(These are just examples that may be applicable to ME - but YOU say what YOU don't want; there are just examples but it's up to YOU)

Importantly, this is a legal document and health professionals are legally obliged to follow it.

You don't have to draw it up with a lawyer for it to be a legal document BUT it is far in your interests to do it with a lawyer who can confirm you are of sound mind at the time of writing it.
Because if professionals suspect that you were not of sound mind - mentally ill or otherwise lacking full mental capacity - at the time of writing the Advance Directive - then they can ignore the document and not respect your wishes contained within it.
Legally, the scope of the AD does NOT allow you to say which treatment you DO want; only what treatment you don't want.
But I would say to anyone drawing up an AD to also include details of how you do want to be treated.
Because although your wishes for how you want to be treated are not legally binding (rather than what you don't want which is legally binding) if you include it in your AD then for health professionals caring for you in the future using this document it is considered good practice to follow what you do want as well as respect what you don't want.
So, in practice it definitely doesn't hurt to include what you do want - whilst saying how you DO want to be treated offers no guarantee it will be respected, putting it there means it may be respected; which had got to make it worth it!

It's barmy that we have to consider this, but it is an important consideration in the current state of affairs.

 

[tatt]

Karina is still imprisoned and denied access to her parents. She has a lawyer but not one she chose and not one who seems to act in her interests. The lawyer she chose was replaced.