Update on Karina.

[Ren]

Amnesty refused to assist in abuse against ME patients even before poor Katrina [edit - Karina]. As last I understood, their primary focus (in Europe at least) is on gender-neutral ID cards.

 

[CantThink]

Amnesty refused to assist in abuse against ME patients even before poor Katrina. As last I understood, their primary focus (in Europe at least) is on gender-neutral ID cards.

 

[Esther12]

This is only vaguely related, but I just found this abstract from an old conference, and I have not found a published paper for it yet:

Illness Beliefs in Young People with Chronic Fatigue Syndrome

Sarah Lambert, St Bartholomew’s Hospital, London and Trudie Chalder, Guy’s, Kings and St Thomas’ School of Medicine, London


Chronic fatigue syndrome (CFS) is a relatively rare condition in young people. Whilst the role of illness beliefs in adults with CFS has been investigated, very little is known about the beliefs of young people with CFS and the extent to which they influence fatigue, physical disability, or psychological adjustment. This study employed a cross-sectional design to examine beliefs about illness and activity in a group of 38 young people with chronic fatigue syndrome. Mother’s beliefs about their child’s illness were also examined. A small number of specific child and maternal beliefs about the illness and about the harmfulness of activity were associated with self-reported levels of fatigue, physical impairment, and psychological distress. Maternal beliefs were found to contribute significantly to levels of child self-reported functional impairment. Contrary to expectation, maternal beliefs did not make a significant contribution, over and above that made by the children’s own beliefs, to fatigue or psychological adjustment.

http://www.babcpconference.com/archive/conference_archive/york5.doc

I wonder if the result were not dramatic enough to get published?

 

[Alea Ishikawa]

Maternal beliefs were found to contribute significantly to levels of child self-reported functional impairment.

. . .
http://www.babcpconference.com/archive/conference_archive/york5.doc
. . .

Contribute or correlate?

 

[Gingergrrl]

Amnesty refused to assist in abuse against ME patients even before poor Katrina. As last I understood, their primary focus (in Europe at least) is on gender-neutral ID cards.

@Ren On what grounds did Amnesty refuse? Could they explain why or did they even try?

 

[Ren]

@Ren On what grounds did Amnesty refuse? Could they explain why or did they even try?

I'm sorry - I don't know. I just recalled that someone had shared the info on the Justice for Karina FB page. To my understanding, this site http://justiceforkarina.webs.com/faq is linked to the FB page, and there's contact info there, and so I guess these might be the folks who would really know what happened / didn't happen and why. I hope there is an official record somewhere.


I wrote to Amnesty before Karina's situation, regarding abuse of people with ME. Amnesty in one country completely ignored me. Amnesty in another country did answer, but their person questioned the truth of what I had reported, basically saying they didn't believe me and that even if what I reported were true, it's not Amnesty's responsibility or an issue (healthcare) they deal with.


Ironically, I just noticed this on an Amnesty page https://campaigns.amnesty.org/campaigns/my-body-my-rights

My body my rights
Being able to make our own decisions about our health, body and sexual life is a basic human right. Yet all over the world, many of us are persecuted for making these choices – or prevented from doing so at all.

 

[taniaaust1]

. She is too ill to undergo a 2-day CPET but perhaps a tilt table test would be useful to show dysautonomia. I'd be surprised if she didn't have low blood volume, neurally mediated hypotension, postural tachycardia syndrome, or something of this nature, although there was a thread on PR about a man in the UK who was still sectioned in a psych hospital despite having a diagnosis of POTS. I suppose the psychiatrists would claim that autonomic problems arose from prolonged inactivity..

Yes that wouldnt at all work as dysautonomia can be caused by being long term bedbound as she is.

If anything, if it was shown she had that, it could cause them to do torturous therapy on her attempting to fix it eg they could start lowering the feet of the bed (causing her more dizziness) or strapping her up semi upright.. which could end up causing her further brain damage.

 

[taniaaust1]

@CantThink I am not as up to date on this case as others and do not know what has legally been tried or what her parents wishes would be (re: an amnesty group involved). I am not quite sure how we find this out? Is there anyone on PR who is from Denmark and might know more inside details?

If Im remembering correctly, Katrina before she was taken away due to what was going on with doctors/hospital?, when the family got worried she was in danger from psychs etc, she made her parents legally her guardians. I think Ive read somewhere they did those forms etc so her parents were offical guardians.. but then that all was taken from them by the legal procedings the psychs got all started.

She did everything she could and I believe so has her family.

 

[taniaaust1]

I'm sorry - I don't know. I just recalled that someone had shared the info on the Justice for Karina FB page. To my understanding, this site http://justiceforkarina.webs.com/faq is linked to the FB page, and there's contact info there, and so I guess these might be the folks who would really know what happened / didn't happen and why. I hope there is an official record somewhere.


I wrote to Amnesty before Karina's situation, regarding abuse of people with ME. Amnesty in one country completely ignored me. Amnesty in another country did answer, but their person questioned the truth of what I had reported, basically saying they didn't believe me and that even if what I reported were true, it's not Amnesty's responsibility or an issue (healthcare) they deal with.


Ironically, I just noticed this on an Amnesty page https://campaigns.amnesty.org/campaigns/my-body-my-rights

Maybe now that that new report is out in America saying we are truely ill. Maybe someone could use it to try to convince Amnesty. That's the thing, I dont think they've never believed our illness is real. They will not help us stop ending up being locked away by psychs as long as they believe this is a psychological illness.

 

[taniaaust1]

It's alarming to read on the page linked by @Art Vandelay that:


It worries me that she may now be seriously mentally ill as a result of her treatment.

I have been in isolation (for infection control) in hospitals and well know the feeling of going 'stir crazy'. The second time was worst. There were multiple bleeps going off almost constantly, starting and stopping unpredictably, all different, in time with each other, out of time with each other...many were just on TVs and furniture so completely unnecessary. I had no phone contact, no radio, no TV, and not even somewhere I could sit comfortably to read and write.

I felt my sanity slipping very quickly and was close to discharging myself the first night due to the crazy cacophony of bleeps. Others (in the ward opposite - I opened my door to try to get help and heard the discussions - I wasn't supposed to open my door) were complaining about them too, and some bleeps were finally silenced.

To be stuck for as long as Karina has been with no contact with friends or family and no prospect of escape - how long can anyone stay sane?

OTOH, she is said to be in a wheelchair, so moving her would be much easier than if she were in a bed.

That girl would need a ton of counselling when she gets out (if she survives) but its probably going to be a long time she'd be up to it.

I discharged myself from a psych hospital ward once after 2-3 days when I knew I needed help and actually did want to be there getting the help. That place was truely going to send me crazy (or put me into a very severe ME crash) and I just couldnt stand there being no more.

I had noise intollerance and they put me right next to patient recreation room with a blaring TV going from when patients got up in the morning to when they went to bed at night. I had a reversed sleep cycle too so this meant I could get no sleep or rest.

What's even worst, when I wasnt up to getting out of bed and eatting together with the other patients at 7.30am.. I was threatened to actually be dragged out of bed and they were going to do it too.

In the end I had no choice but to leave the hospital even thou I knew I needed some psych help for depression over my situation at the time. (I was suicidal but wanting help back then)

No doubt Karina has been tortured every single day she's been there, a whole two years of isolation and torture...at this point I doubt very very much that her mental health would be good. (that doesnt mean that she shouldnt be out of that place, that place is no good for her, she's got no hope of getting better there).

 

[taniaaust1]

. I mention M.E. as little as possible of I do have to see a doctor (if I can get away without mentioning it. I choose that path). I'd rather die naturally than because I'd been locked up and forcibly deteriorated.

Thing is we dont usually die, instead we can end up in terrible situations like very severe pain in which a severe ME patient may have no choice but to attempt to seek medical treatment for etc

Its easy to say you wouldnt go to a doctor but if someones symptoms do get severe enough, they may have to. When I was sicker, the amount of pain I was in is indescribable (my sheets on my bed used to even really hurt me).

 

[taniaaust1]

From: http://www.diagnosticrights.org/1491-2/karina-hansens-painful-fight-for-justice/

N.B. my bolding and underlining.

According to this excellent letter from the CDR - http://www.diagnosticrights.org/the...-minister-of-health-on-karina-hansens-behalf/ (which lists 10 violations of human rights - very interesting for those following this case/situation), Amnesty International Denmark and Human Rights Watch Brussels along with other organisations were copied into the letter... So they are well aware. Thus partly answers my earlier question, but also begs a further question... What are they doing about it and if nothing, then why not?

They wont interfere as they believe ME/CFS to be a psych illness.

I have exactly the same issue surrounding me, broken human rights etc. My complaint for the Equal Opportunity Commissioner to do something about it went unheeded, they didnt even investigate or phone my doctors, they just listened to the gov dept who is treating me horrifically.

I had the person in charge of investigating my complaint at the Equal Opportunity Commission.. tell me I would have to just accept that Im not getting the support "I think" I need and learn to live with my illness. (her words.. she wouldnt accept Im really sick and actually do need the help)

She then proceded to tell me a heap of lies eg "you cant take anything to court if you are as sick as you say you are as that would mean you are too sick then to attend court".. LIE.. Im getting a phone hearing!! Im glad I picked up on all her lies)..

Anyway this one from the equal opportunity place who is supposed to stop discrimination, tried to stop me trying to take the gov dept treating me horrifically to court. I now do thou as I ignored her and refused to drop the complaint, she had to pass my case on and now I are taking things to court.

This stuff is everywhere cause people do not believe we are physically sick and just think we are mental health patients as we have ME/CFS. People do not even investigate the truth around us due to this, Karina has this same issue and it affects her being able to get help from human rights groups.

 

[MeSci]

Thing is we dont usually die, instead we can end up in terrible situations like very severe pain in which a severe ME patient may have no choice but to attempt to seek medical treatment for etc

Its easy to say you wouldnt go to a doctor but if someones symptoms do get severe enough, they may have to. When I was sicker, the amount of pain I was in is indescribable (my sheets on my bed used to even really hurt me).

Did the doctor actually help with this? The point is, we may go to the doctor, but just not mention ME, due to the risks that can pose of being labelled as mentally ill, which can prevent at least some of us from getting any help at all, and in the worst case of being treated as Karina is.

 

[CantThink]

If Im remembering correctly, Katrina before she was taken away due to what was going on with doctors/hospital?, when the family got worried she was in danger from psychs etc, she made her parents legally her guardians. I think Ive read somewhere they did those forms etc so her parents were offical guardians.. but then that all was taken from them by the legal procedings the psychs got all started.

She did everything she could and I believe so has her family.

Yeah, you are remembering right - she gave them Power of Attorney and had appointed a solicitor/lawyer.

In light of this, the appointment of the state guardian is viewed as illegal by everyone except the State/courts/clinic.

 

[CantThink]

I wrote to Amnesty before Karina's situation, regarding abuse of people with ME. Amnesty in one country completely ignored me. Amnesty in another country did answer, but their person questioned the truth of what I had reported, basically saying they didn't believe me and that even if what I reported were true, it's not Amnesty's responsibility or an issue (healthcare) they deal with.

Argh! That's terrible. What an attitude they have.

 

[CantThink]

Thing is we dont usually die, instead we can end up in terrible situations like very severe pain in which a severe ME patient may have no choice but to attempt to seek medical treatment for etc

Its easy to say you wouldnt go to a doctor but if someones symptoms do get severe enough, they may have to. When I was sicker, the amount of pain I was in is indescribable (my sheets on my bed used to even really hurt me).

It's just my personal opinion and choice about my situation. Everyone has the right to decide when to seek medical assistance.

Regarding the comment that it is easy to say you wouldn't go... I don't think I speak from ignorance - as a 10 year old my paediatrician wanted to admit me to the psych ward for 'treatment' for my M.E. and they also wanted to put me on tranquilizers and other pysch meds to treat my physical symptoms. I learnt pretty quickly that doctors were not listening because they had their own agenda/preconceived idreas, and they had their own intentions and ideas about what to do with my body.

As a result, I grew up with a fear that I was going to be taken away from my parents and/or locked up in a psych facility. I was quizzed by a social worker without the knowledge of my mother - they were asking me questions that were essentially digging hoping to find a reason (via my answers) to remove me from my parents' care. When I got a bad knee injury, a different paediatrician tried to accuse my parents of having caused it (but I had witnesses to my fall and wasn't even at home when it happened).

At the time, this was happening to other young people with M.E.. Some were locked up or taken away from their parents into foster care. This fear has never gone away and I think because it is so deeply ingrained in me, I have found myself not seeking medical help (when I should) because of my phobia. It has shaped me... This experience growing up...

So as an adult, I have chosen in the past to not seek treatment and, for example, passed out from the pain instead. When my mum has wanted (begged) me to allow her to call an ambulance, I have refused... She has been really angry with me about that (and I understand why and feel somewhat bad about it, but my fear runs deep).

It's difficult. I do think I have a choice about whether to involve doctors or seek treatment. That is until someone else calls the ambulance without my permission, either because I'm passed out or they just choose to do so with without my knowledge. Just as other PWME have the right to choose to seek treatment and medical help. I expect I'm not the only one who will suffer rather than try to seek help.

 

[CantThink]

Did the doctor actually help with this? The point is, we may go to the doctor, but just not mention ME, due to the risks that can pose of being labelled as mentally ill, which can prevent at least some of us from getting any help at all, and in the worst case of being treated as Karina is.

Yes, this is part of my point... When I do get forced to the doctor about other co-morbid conditions/issues... I don't mention M.E. I just keep it to the new symptom/s or co-morbid issue. Most of the time I'm seeing a new doc who has no idea as about me, so that (weirdly) helps.

 

[chipmunk1]

http://www.ncbi.nlm.nih.gov/pubmed/23837183

a recent publication by PF..

Functional somatic symptoms and consultation patterns in 5- to 7-year-olds.
Rask CU1, Ørnbøl E, Fink PK, Skovgaard AM.
Author information

Abstract
OBJECTIVE:
To investigate the frequency of and factors linked to medical consultation for functional somatic symptoms (FSS) among 5- to 7-year-old children.

METHODS:
We assessed 1327 children from the Copenhagen Child Cohort 2000 for FSS at ages 5 to 7 years. Register data on past health care use in general practice were compared between children with and those without parent-reported medical consultation for FSS at the age of 5 to 7 years: respective consulters (n = 96) and nonconsulters (n = 211) and children without FSS (n = 1019). Degree of parental worries about the child's symptoms and parent-reported symptom characteristics and associated impacts were compared between consulters and nonconsulters.

RESULTS:
Among 308 children with FSS, 31.1% were consulters. Being a consulter was significantly associated with multisymptomatic presentation, parental worries about the symptoms, symptom impact, and a higher past health care use in general practice. Multiple logistic regression analysis controlled for gender, comorbid physical disease, and symptom severity revealed that the number of face-to-face contacts in general practice during the child's first 4 years of life predicted being an consulter for FSS at 5 to 7 years (odds ratio 1.03, 95% confidence interval 1.00-1.06; odds ratio interpreted per unit change in number of contacts).

CONCLUSIONS:
This study adds to our understanding of health care use for FSS in childhood by highlighting the influence of parents' early consultation patterns with their child and the influence of parental perceptions of their child's health and FSS-related impact on pediatric health care use for FSS. Management of health care use in children with FSS should address these aspects.

Note that out of a random sample of 1300 6 year old children 300 that's close to 25% were considered to be somatizers and it is suggested that it is at least partially the fault of the parents

Psychiatric problems in parents may have influenced the child’s symptoms, but not in a way severe enough to make the parents seek medical care on behalf of their child. Furthermore, due to the small number of register cases on parental psychopathology, the effect of specific parental psychiatric disorders such as anxiety and somatization, which may have a particular bearing on the use of health care, could not be examined

The present findings point to potential targets of early intervention in primary care toward children with FSS: (1) children with an early pattern of high health care use in general practice, and in its own right and regardless of the putative direction of causality; (2) children with FSS with associated impairment in various areas; and (3) parents who have unrealistic health anxiety and worries about the symptoms of their children.

 

[mango]

I expect I'm not the only one who will suffer rather than try to seek help.

no, you're not alone.

 

[MeSci]

Note that out of a random sample of 1300 6 year old children 300 that's close to 25% were considered to be somatizers and it is suggested that it is at least partially the fault of the parents

This is crazy.

I found an earlier paper, which says:

Mental health problems according to International Classification of Diseases (ICD-10) and Diagnostic Classification Zero to Three (DC 0–3) diagnoses were found in 16–18% of 1½-year-old children.

Are they serious?