Karina's Story - A Modern Tale of Horror!

What Now?

What happens when a state sanctions the forcible removal of an individual from their family?

Can we trust the state to get this right?

For Karina Hansen in Denmark, it would seem much has gone wrong.

Image by Wendy Boutilier

Of course, we can all understand when a vulnerable person needs to be removed from an abusive situation, but we tend to make the mistake of believing that the state gets this judgement right.

So, when an different story hits the headlines, we assume that only one side of the story is being told.  After all, we say, there must be more hidden behind confidentiality clauses.

With this sort of complacency, how can state sanctioned abuses be highlighted and put right?

In Karina's case, she became severely ill with ME.  Her parents, naturally, helped her by protecting her from the outside world of over-stimulation and stress.  Families world-over do this when one of their own gets ill.  The difference is that most people recover in a few weeks.

Karina did not recover.  Severe ME is like that!

So the state got involved, and Karina was removed from her family on Feb 12th 2013.  She has been undergoing treatment against her wishes at Hammel Neurocenter in Denmark ever since.

It seems a psychiatric diagnosis over rules all other medical diagnoses, and despite the fact Karina is no danger to others, nor to herself, she can be forced to undergo treatment that neither she, nor her family, want for her.

Her parents have been allowed no contact with her.

Reports about her condition are sketchy and there are genuine fears that she has deteriorated significantly.

The psychiatrist in charge of Karina's care, Per Fink, says that she has a Functional Disorder, which means that they believe her condition is psychosomatic.  He does not believe that ME is a real physical illness.

Instead he has placed her on a regime of anti-depressants, Graded Exercise Therapy and Cognitive Behaviour Therapy. The centre says she is not being held against her will, but of course she is too weak to walk out, and it seems no-one is allowed to help her leave!!

Second opinions have been sought only from other sympathetic psychiatrists, and offers of help from leading ME specialists have been rejected.  

Legal avenues to secure her release have so far led to nothing, and Karina's parents have exhausted their funds.

So what happens now?

Is Karina to be left, unable to have contact with her family, unable to reject this treatment and in constant suffering amongst people who neither love her, nor take her illness seriously??

A petition has been running for some time to collect support for her release.
It can be signed here:

Petition: Justice for Karina  

Dr Stig Gerdes, a Danish doctor, has taken an interest in Karina's case, and has started to challenge the psychiatric treatment of Karina.

A fund has been set up to help with the legal battle that is likely to ensue, and contributions can be sent to Dr Gerdes via Paypal at: s.g@dadlnet.dk

Tragically her case is not isolated.

Psychiatrists, it seems, are fond of imposing their treatments on vulnerable individuals.  The recent case of Justina Pelletier in Boston, USA has many similarities to Karina's case.  Happily a massive campaign has led to Justina's release and I can only hope that the psychiatrists involved her case are thoroughly investigated.

So now Karina needs to have HER story told.  This needs to be talked about widely, and questions need to be asked in high places. To date there has been some media coverage and several blog posts. I have linked a small selection below.

However MUCH more needs to happen to fight this case, because this is not JUST about Karina. 

This is now about the whole business of enforced psychiatric care - against patients' and their families' wishes, and against the advice of other medical professionals.

Please talk about Karina's situation widely.  Share this post, or others from the links below, and if you can make a contribution, no matter how small, towards the legal fees of Dr Stig Gerdes then perhaps consider doing so.

The amount needed is estimated to be 100,000 Danish Kroner, that is £10,606 [or $18,145] 
On the 11th July the fund stood at £3045 [$5,209].​

Nothing will change if we do nothing.  

****

Links:
Something Rotten in the State of Denmark (May 2013)
Karina Hansen is taken from her home (May 2013)
Press Release from ME Association in Denmark (March 2014)
Parliament Hearing for Confined Danish ME Patient Karina Hansen (March 2014)
Charity Invest in ME - Letter offering ME expertise 
Justice for Karina Hansen Facebook Page
Facebook Page: Finkbusters The Long Walk to Free Karina
The Coalition for Diagnostic Rights' letter to the Danish Minister of Health

And a little after-word.  I wrote this poem last year as I thought about my own situation in comparison to Karina's.  The photo behind the words is a 5am sunrise over the West of Ireland. 

Click on image to view larger version

Please help however you can.

PS I am not directly involved with this fund, but have contributed to it and believe the case important enough that I want to share it widely. Perhaps you will feel this way too.

The Exercise Catch 22!

If we aim too high physically we crash - maybe permanently lower.

If we aim too low physically we loose condition, muscles and bone.

So where is the happy medium?

I suspect we have a line we must not cross above, because doing so causes harm.

It's like a glass ceiling.

We can stroke this ceiling gently if we are careful, and it will wobble down for a bit as PEM - but break it and it will shatter and reform at a permanently lower level....

So how do we avoid crossing this glass ceiling during life's surprises - like when we get a virus, or an unforeseen extra activity or stressor?

I've been told to use the 60% rule, .... ie Stay 40% below the glass ceiling. The principle being to always leave a little in reserve.

Yet how do we find WHERE that glass ceiling is if we are aiming to never touch it? And crossing it risks permanent loss (as has been my case several times to date).

I get a few warning signs as I approach my glass ceiling so I can back off. They can be tiny signs at the time. Things in the past I would have ignored!

Yet I find, I MUST keep backing off as that is the only way to stay well for me.

Not backing off quickly enough after a glass ceiling incident has, in the past, meant I quickly broke the new lowered ceiling and so had a double whammy down down ..... which is scary scary!

It might look like this on a graph:

Click on image to see a bigger version

Personally, I've been ill 28 months now, and only recently have I managed to achieve an 8 month period without further decline. 

It has been suggested there are two types of ME patient... 

- those who are most likely to over do things, and 

- those who are at risk of doing too little? (Really?) 

I know psychiatrists like to think we are all the second type.

I suspect however that most ME folk are the first type.

We ALL want to do MORE, so we are more likely to be at risk of "over-doing" than "under-doing".

Exercise programmes that advocate any "increase" are therefore dangerous, because early "successes" are simply using up our safety net and causing us to sail much too close to our personal glass ceilings.

Then it only takes something little, to send us hurtling into the glass and smashing it and lowering it permanently. This is why Graded Exercise Therapy is so harmful.

This is why we need to budget so carefully, CHOOSING what to spend our energies on, but not trying to force our broken metabolic systems to spend more energy than our current energy income allows.

The glass ceiling will move up only when it is good and ready, but trying to force it up is a risky business....

Does this make sense to you? What do you think?

**********

Related posts:  
Why NOT Exercise?
Pacing for ME and Using a Fitbit
A few Notes on using a Heart Rate monitor for Pacing

Can you help this Spanish ME sufferer? Please read!

The Spanish authorities are trying to remove the pension from an ME sufferer who has supported other patients online. They say if he can do this, he can work.

"We are asking people all over the world to send their photo by email for the mural we are putting together for the press conference to denounce this next Tuesday.
Please send your photo to aquatarragona@gmail.com (aquatarragona @ gmail.com)
You might also want to include some words of support to Mario."
Clara Valverde

MORE DETAILS HERE

Please consider taking some time today to send in a picture of yourself with a few words of support. I have done so.  Photos and letters of support are requested by Tuesday.

Letter and photo I sent below:

To whom it may concern,

I am a patient with ME in N.Ireland.  I am often confined to my recliner chair, because any exertion such as walking or even chatting with people takes more energy than my body can deliver.

However, I find that talking on the internet, where I can take as long as I like to compose my message, is very helpful and helps me to feel less isolated.  Believe me, this is an isolating illness!

I can do so few of my past pleasures.  I cannot even walk around the garden I created when I was well.  I certainly cannot do the job I loved - which was teaching.

Yet, I am able to help others who also have this horrid condition.  I can chat online, in my own time, and let others know I understand.  I have shared a laugh with ME patients from many corners of the world via my computer.  Doing so does not mean I am recovered - only that my suffering (and hopefully the suffering of those I chat with) is alleviated.

Please reconsider your decision to remove Mario's pension.  If he is like me, he would be of no use to any employer due to the inconsistency of  his abilities.  Please do not deny him (and many others) the chance to alleviate suffering in their erratic good moments.

Most countries have very little support for ME patients, so the care that Mario is offering without charge should surely be valued and not punished.

I have attached a photo of myself having a quiet cuddle with my puppy - taken from my computer.  This is where I spend much of my waking time - and often with the seat fully reclined back and a keyboard on my lap.

Please reconsider Mario's pension as a matter of urgency.

Regards,

Sally Burch
Northern Ireland. 

*****
Note as an afterthought:  I am not always totally confined to resting, but there are certainly days in a row when I feel unable to function much.  I am however one of the lucky ones to have great support, and am therefore able to rest when needed.  This support allows me to rest enough to be able go out on my scooter with my dogs, or to visit friends and family.....  Yet the energy required to work is huge, compared to the energy I have available.  I imagine it is like this for most people with ME.

Update on "Adopt CCC for ME" petition

The "Fully Adopt CCC for ME in Northern Ireland" Petition, initiated by the Newry and Mourne ME Fibromyalgia Support Group, was presented to the Speaker of the Northern Ireland Assembly at Stormont, on Monday 30th June 2014 by MLA Mr. Dominic Bradley.

Link to the official report of the moment.

A file of background material was included alongside the petition statement, including amongst other information, the official reply to questions that the group had put to Northern Medical and Dental Training Agency concerning the amount of time, and content of training, which GPs receive on M.E. and Fibromyalgia.

Joan McParland, May Patton, and Martina Marks, from the Newry and Mourne ME Fibromyalgia Support Group, with Mr Dominic Bradley MLA outside Stormont.

Thanks to Horace Reid for the photographs.

MLAs Joanne Dobson (Now UU Health Spokesman) and Mickey Brady also supported the petition and paused for a photo....

As did MLAs Jim Wells and Pat Ramsey.

Below, the moment the petition signatures, the letters of support and the file of supporting material was handed to Mr Dominic Bradley ready for official presentation.

The Newry and Mourne ME Fibromyalgia Support Group were delighted with the extent of support for their initiative, and the comments below were made by Mrs. Joan McParland as she thanked Mr Bradley and reported events to the group: 

Thank you to MLA, Mr. Dominic Bradley for presenting this petition to the speaker of the Northern Ireland Assembly. 

The speaker will officially forward to the Minister of Health for Northern Ireland, The Department of Public Health and Safety and The Chair of The N.I. Health Committee to consider the evidence of urgent need and to implement the full adoption of The Canadian Consensus Criteria for all diagnoses and research purposes. 

This document would provide clinicians and all health providers an opportunity to offer patients a more accurate diagnoses and bring a better understanding and acceptance of the seriousness and debilitating symptoms suffered by M.E. (Myalgic Encephalomyelitis) and Fibromyalgia patients.  

Included in the folder we added solid written evidence on the current situation of disbelief, gross misdiagnoses due to the lack of medicinal professional's training and total lack of SPECIALIST NHS services in N.I. The urgent need of care for the most severely affected and children has also been highlighted. 

The M.E. patient population have been dismissed, neglected and indeed sometimes abused for too long and we will no longer be fobbed off with the offer of GET and CBT being delivered by non specialist professionals who wrongly believe they can 'REHABILITATE' patients back to full health. 

The current Northern Trust 12 week pilot scheme offering SEVERE M.E. patients a possible return to previous employment is nothing short of ludicrous!

The video clip below records the momentous event.

And in the same week the Newry and Mourne ME Fibromyalgia Support Group also achieved charitable status.  Things must surely be looking up for ME and Fibro sufferers in Northern Ireland!

Finally, it just remains for me to give A VERY BIG THANK YOU on behalf of the group, to everyone who supported us with this venture.  Together we can hopefully bring about big changes for the treatment and outlook of ME and Fibromyalgia patients world over.  Thank you all.

*****

Link to previous post on the Petition:
Adopt CCC - Initiative by Newry & Mourne ME/FMS Support Group

PS I am Vice Secretary of the Newry and ME Fibromyalgia Support Group