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My response to a statement from Aarhus University Hospital (Denmark) regarding a demonstration in New York City and a patient at the Hospital

October 22, 2018

Screenshot 2018-10-21 at 23.59.35

 

On 17 October 2018, Aarhus University Hospital (AUH) in Denmark published the following statement (link here):

News

We have been informed by Columbia University that claims and information about a particular patient are spreading on the social media, including that this patient has received treatment at The Research Clinic for Functional Disorders at Aarhus University Hospital, Denmark. These claims are unsubstantiated and include misinformation.

It is a deplorable case that has affected all involved parties deeply. However, we believe that most people will understand that because of duty of confidentiality, we are unable to publicly discuss a patient without the patient’s consent. Further, we find that it is disrespectful and a violation of a young woman to expose her suffering and making her illness history public domain. Even confidential medical information has been published on the internet. She has not approved to be a front figure in an ideological fight.

The Research Clinic for Functional Disorders is an outpatient clinic. In special circumstances, we share treatment responsibilities with other medical departments, which we did in this case. The admittance to a rehabilitation facility was an act of necessity according to Danish legal practice – a decision which The Research Clinic for Functional Disorders was in no way involved in and therefore cannot account for.

In Denmark, it would not be possible to carry out an action as described on the social media; it would be illegal. In connection with the admission, her parents have taken several legal actions in the courts, none of them having resulted in any negative critique of the treatment. Besides, the course of treatment has been scrutinized by an independent committee of the Danish Parliament, again without leading to any negative critique.

In general, we can inform that The Research Clinic for Functional Disorders has never treated any patients against their will or refused any patients to leave the department or discharge themselves. Thus, to postulate that I or any member of my team have violated human rights is outrageous. It is reprehensible to suggest that I or anybody in the clinic have initiated or contributed to children being removed from their homes.

Our clinic is a department at the Aarhus University Hospital, which has been rated the best hospital in Denmark in the past 10 successive years. Like any other medical departments in Denmark, we have to meet the highest medical standards and act according to the law and are continuously being supervised by The Danish Health Authority. We have received extremely few complaints from patients that have received treatment in our clinic.

The department, the research and the treatments we have developed since 1999 have proven very successful and are well accepted both by most patients and colleagues. Initiated by The Danish Health Authority, this has now resulted in the implementation of similar clinics for functional disorders in all Danish regions (see English summary on p. 6 in the report ‘Functional disorders. Recommendations for assessment, treatment, rehabilitation and destigmatization’, published by The Danish Health Authority, June 2018). https://www.sst.dk/da/udgivelser/2018/funktionelle-lidelser-anbefalinger-til-udredning-behandling-rehabilitering-og-afstigmatisering).

Per Fink, PhD, DMSc.
Professor, Head of Department

The patient mentioned in this statement bears a striking resemblance to Karina Hansen. Karina is a young Danish woman diagnosed with myalgic encephalomyelitis/ME and later forcibly removed from her family home by the state authorities (see the end of this post for a full summary of her story).

For the purposes of this post, I am assuming that it is Karina to whom Professor Fink’s statement refers. For a chronology of Karina’s case up until April 2016 see Karina Hansen 4: Timeline, Torture and Tragedy. Note that this post predates Karina’s release in October 2016 and the removal of her court-appointed guardian in October 2018.

As I have written extensively about Karina’s case in this blog, this is my response to AUH’s statement (usual apologies for the loss of formatting from this point on: one day I’ll crack it…..):

Veracity of information

The AUH statement says (amongst other things) that misinformation is spreading on social media. As is always the case with this form of communication, there are some instances where the information which is being circulated about Karina’s situation is misleading and/or incomplete.
The information in my blog posts comes either directly from Karina’s family or was already available publicly. According to her family, Karina herself wanted her story to be publicised. The rest of the material contained in the posts comes from my own research and analysis. I’m well aware of the legal issues involved.
In writing and researching my own blog posts, I rely on information given and received in good faith from reliable sources and I carry out due diligence in verifying everything I write as far as is possible.
Legal and ethical issues
My early posts about Karina deal with the legal issues surrounding her incarceration and how this was constructed and achieved. It’s quite true to say that, technically speaking, Professor Fink and his team did nothing overtly unlawful. However, the motivation and justification for their actions is less clear.
During the course of my research, my colleague, Robin Callender Smith, contacted Professor Fink and others at Hammel Neurocenter as well as the Danish Departments of Health and Justice. From the Clinic, only Professor Fink replied and in a manner which took the matter no further. His response is in Karina Hansen 2: the Ghost in the Room. The state departments acknowledged our enquiries but followed up with no more than standard formulaic responses.
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The ethical nature of the #MEAction demonstration in New York City on 20 October is a matter for the organisers. The demonstration concerned Professor Fink’s guest presentation at Columbia University’s annual Psychosomatic Conference. Ethical issues and legal imperatives frequently share common ground but they are separate entities and give rise to different considerations. Since Karina’s story has been widely publicised with the consent of her family then, legally speaking, the US organisers of the demonstration should have First Amendment protection (as would any speaker at the conference).
Privacy issues
In most European countries, privacy is governed by a combination of domestic law and practice within each state, the European Convention on Human Rights (ECHR) and the Charter of Fundamental Rights of the European Union. There is always an inevitable tension between the right of individual citizens to a private and personal life (ECHR Article 8) and the right to freedom of expression ie. the right to impart and receive information (ECHR Article 10).
As is always the case where competing interests arise, these rights must be considered together and a balancing act carried out. Karina voluntarily surrendered, through her family, her right to personal privacy concerning her illness in favour of discussing the broader issues which arise from it. It would seem that she believed – as I do – that, in certain circumstances, the public interest in open debate outweighs the counterbalancing need to preserve an individual’s personal privacy.
Levels of personal privacy protection in the US are much lower than the standards which are applied in European countries although patient confidentiality must always be considered in all jurisdictions. In the past, there have been public protests in Denmark about Karina’s situation where personal privacy is much more protected. To the best of my knowledge, no action was taken against the organisers.
AUH’s defence

Much of Professor Fink’s statement is self-serving in its defence of his actions and the University’s practices. I make no further comment on that.

Disclaimer
Nothing I have said in this statement should be taken as legal advice.”
Valerie Eliot Smith
22  October 2018
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KARINA’S STORY

Karina lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).

[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.]

ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model, often in combination with unsuitable psychotropic medication. Despite often extreme physical and cognitive impairment, patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no single universally agreed diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.

Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.

Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will. Her condition deteriorated rapidly after her admission to the Clinic and shortly afterwards, she was found by the local court to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. 

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

During the course of 2016, I wrote a series of articles chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.

On Monday 17 October 2016, after three and a half years of incarceration, Karina was able to return home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs. The trial period passed without incident; Karina was home at last – but with a future changed forever.

In October 2018, Karina’s court-appointed guardian was discharged from her case and she finally regained control of her own health and financial affairs. She remains extremely ill. 

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Disclosure

I have lived with the illness ME since 1981. For more information see About.

 

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Karina Hansen news (updated: her guardian is discharged)* + a battle with NICE (the UK’s National Institute for Health and Care Excellence)

September 28, 2018

[NOTE: a brief personal update

Last year I went to live abroad. I wrote about this change in my February 2017 post PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version . As of September 2018, I am now UK-based again. While I was away, I continued my work assisting and advising members of the international myalgic encephalomyelitis (ME) community, in addition to the general research work which I have been doing for many years, some of which is reflected in this blog. My work goes on although it remains severely limited by health problems (I have lived with ME since 1981).]

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* KARINA HANSEN NEWS – updated 10 October

On 26 September 2018, a further court hearing took place in the case of Karina Hansen. Karina is a young Danish woman with severe ME who was forcibly removed from her family home by the state authorities and confined to an institution as a de facto psychiatric patient for three and a half years. She was eventually allowed to return home in October 2016. However, the local court had appointed a guardian in her case, because of misplaced concerns regarding her capacity to make decisions about her own health and finances.

The 26 September hearing was to determine whether or not the guardian should continue in his role or be discharged by the court. As often happens at court, the matter was adjourned until 10 October.

On 10 October, the court finally discharged the guardian from his duties in relation to Karina.

Karina has now finally regained control of her own health and financial affairs

For full details and the background to her story, see my previous post at Karina Hansen 8 (updated): the aftermath continues The full list of articles about Karina can be found in the Karina Hansen category in the sidebar of this blog.

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THE BATTLE WITH NICE

(This is quite long, at slightly over 4500 words, but it falls naturally into shorter subsections so I hope that the brain-fogged among us – of which I am one – will be able to read it in stages. That is how I had to write it).

NICE is the UK body which “provides national guidance and advice to improve health OtVmgpckQr25e6Xxl%PU8Aand social care.” It issues guidelines on the diagnosis, treatment and management of a range of illnesses. The last set of guidelines for ME (or “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” as it is currently calling the condition) was issued in 2007. This was a problematic time for the ME community, not least because of the failure of a judicial review (JR) of the CFS/ME [sic] guidelines review process. The JR was launched by two community activists and concluded unhappily in 2009.

The 2007 guidelines were due for update in 2017 but, initially, that review was postponed. Following pressure from the ME community, this decision was reversed and an update is now ongoing with the new guidelines expected in October 2020.

Some background observations

Earlier this year, I had an email discussion about the NICE process with another member of the ME community. In order to put a context around my subsequent exchanges with NICE (below), I’m copying some extracts from that discussion (my emails only, slightly edited for clarity):

February 2018  (in response to some questions)

The current incarnation of NICE was created by statute, the Health and Social Care Act 2012 (HSCA). It is governed by its own process as set out in the manual. There is very little flexibility about what it can do and how it can do it. NICE is not governed by any one specific area of law but by general public and administrative law practice and procedure, as are all public bodies. Likewise, the status of stakeholder has no legal basis as such. Any attempt to try a novel legal approach [on the process] would be risky in terms of costs and outcome.

Professor Mark Baker [the then outgoing Director of the Centre for Guidelines at NICE] will not be able to make any undertakings or commitments. That would be beyond his discretion and outside the scope of the NICE process. Even if he could, he could not bind any successor. It’s necessary to understand that, even if anyone at NICE did want to “help” the ME community more, they do not (officially) have the power to do so ie. even if they did, they would not be able to say so publicly.

I am the first to argue that ME patients merit special treatment, given the way we have been treated over many decades. However, the NICE process isn’t going to fix that. Without the benefit of a comprehensive, proactive/reactive media strategy aimed at radically changing the perception of both patients and illness (which would take a while) this will be a slow process [emphasis added].

Whether or not it’s worth engaging in the NICE process is an impossible question. I have argued that we needed an expedited review to prevent further harm [by continuing the current treatment recommendations] but the amount it can achieve is limited, as is the role of stakeholders. Trying to get NICE to accommodate the demands of the community won’t work. However, even if a mass walkout of patient groups could be organised, that just leaves the review in the hands of unhelpful others. On balance, I think it’s better to be part of it but to keep expectations realistic.

That said, there is always room for appropriate direct action by patient groups, so that voices are heard and concerns raised. Unfortunately, our reputation precedes us (crazy/hostile/angry/dangerous/unreasonable etc. etc.) and that isn’t a good starting point.

As I said in [a recent] blog post – “The exhortation to “speak truth to power” has become a commonly used slogan. The actual use of this concept to achieve real results is a complicated and nuanced process, especially if those doing the speaking are themselves without power.” Until we can change that [see reference to “media strategy” above], progress will continue to be painfully slow.

And later:

March 2018

The NICE manual on developing guidelines is here https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview The relevant part of the HSCA on NICE (section 232 onwards) is here https://www.legislation.gov.uk/ukpga/2012/7/part/8 It creates the power for NICE to carry out its statutory functions and sets out the usual duties/standards etc.

NICE has very broad statutory powers and is a self-regulating public body. This means that it would have to act very “irrationally” (in the legal sense) for any of its actions to be susceptible to challenge. This is quite normal for bodies of this nature and is to allow them a broad discretion in which to operate.

In a nutshell, NICE writes its own rules and marks its own homework. That said, I wouldn’t necessarily dismiss everyone connected with it out of hand. Obviously, I remain sceptical – but not everyone is a bad guy. However, as I said before, those who work for NICE have very little discretion in what they can do as they are bound by the process.

The main purpose of section 232 was to bring social care under NICE along with health. Presumably this was for political expediency – more commonly known as other ways in which we can cut costs and screw patients/those needing social care.

[apologies for the language but sometimes it’s necessary to call a spade a spade…]

The battle begins

NICE appears to encourage community engagement by inviting interested organisations to register as stakeholders in the guidelines update process. Because of the particular work which I have done over the many years, I applied to become a stakeholder for the “ME/CFS” review process under the “Organisations that fund or carry out research” category. This was in May 2018. (My application was much later than I had intended as a result of other life events intervening).

My application was duly accepted. In July, I checked the newly-updated list of stakeholders but could not find my organisation, Law and Health (the sub-heading of this blog since 2012) listed. I queried this with NICE and received the somewhat alarming reply below (note that there are some redactions in this correspondence because of data protection requirements). I apologise for the chaotic formatting which, despite my best efforts, falls apart from this point on:

NICE to me – 25 July 2018

We currently have you registered on our stakeholder list under the Queen Mary University of London name. This is because this organisation meets our criteria to be a registered stakeholder as we accept universities as stakeholders on our guidelines.
If you wish to be registered under the Law and Health organisation title instead, we would need you to re-register through our website as a stakeholder under this organisation name. Please be advised however that we would require proof with your registration that this organisation has a national remit and meets our criteria outlined on our website.  
If you are happy to stay registered under the Queen Mary University of London name, we are happy to accept any consultation comments from you and formally respond to each of these comments. However, please be advised that should your Law and Health organisation be judged to not meet our criteria, we will now not be able to formally respond to any comments you submit. We can only respond to comments from registered stakeholders which you currently are.
I was rather stunned by this news (many readers will recall that QMUL was the public authority responsible for withholding information about the controversial PACE trial of treatments for Chronic Fatigue Syndrome [sic]). Initially, I decided to take the line of least resistance and leave things as they were. However, within a few days, I had become extremely troubled by what NICE had done so I replied as follows:

My reply to NICE – 1 August

I have given some further thought to our recent email exchange and would like to raise the following points:
  1. I applied to register as a stakeholder under the banner of my organisation “Law and Health”. The notification that my application had been successful did not explain that this had been changed and I was now registered as a QMUL stakeholder. This was a unilateral change made without consultation or agreement and the notification was therefore misleading.
  2. Law and Health is a small organisation but, to the best of my knowledge, no other UK organisation covers this area. Its remit is to research due process as it relates to medical issues, particularly “ME/CFS”. Some of its work is reflected on the website (link below) but there is also ongoing work providing advice and assistance to other groups and individuals. This work is not publicly visible. To continue the work, I need access to as much information as possible regarding governmental, quasi- and non-governmental bodies. This is why I applied to register as a stakeholder under the Law and Health banner.
  3. I have no mandate to speak for QMUL regarding the NICE guidelines review. QMUL is aware of my work on “ME/CFS” and I use my academic address because it gives me greater access to research materials. However, I would be unable to comment on behalf of QMUL on NICE issues as my academic status there does not relate to this area
  4. I realise that the current round of comments on the current review has just closed. However, I would like the option of commenting later on in the process and to continue to receive the relevant documentation as a legitimate stakeholder.
I would be grateful if you would clarify how this situation came about, that I was registered under a different organisation from the one under which I applied and then not told of the change or given the chance to make further representations.
I would not expect to have to submit a further application as my first one should stand on its own merits in conjunction with the additional information I have provided here.
NICE to me – 10 August
Sorry for the delayed response. I have spoken with my colleagues in the Public Involvement Programme and we would unfortunately not be able to accept your Law and Health organisation as a valid stakeholder. Within our criteria we unfortunately cannot accept individuals, blogs or local/regional organisations as stakeholders. Our stakeholders must be a national organisation with a national remit and we believe that we currently have a few large national organisations registered on our stakeholder list that cover the same remit as yourselves.
We would recommend that you check our stakeholder list for this ME/CFS topic for an organisation that can represent your interests. Once you have found an organisation that shares the same remit as yourself, we would advise approaching this organisation to ask if you can submit any comments to them during our next consultation period. We would then be able to formally respond to your comments once they are submitted through this registered stakeholder.
You will also be able to submit any comments you have during our next consultation period if you choose to remain as a non-registered organisation. We will review these, however we will just not publish our responses to these comments on our website.
In terms of why you were initially aligned with the QMUL organisation, I believe this was because you registered through your QMUL email address and we were not able to find any information about your Law and Health organisation when searching online. We also didn’t receive a web link for your Law and Health organisation with your initial application. Therefore, we believed that this Law and Health organisation name was a sub-department of QMUL. We do not accept sub-departments of universities as registered stakeholders, so we registered you under the over-arching university name. However, we apologise for the confusion this has caused you.
As you have stated that you cannot be registered under the QMUL name, I will remove you from the stakeholder list now for this university. I would recommend that you please check our stakeholder list for any organisations that represent your interests.
My reply to NICE – 10 August
Thank you for your reply. Unfortunately, it contains a number of inaccuracies and incorrect assumptions so it fails to address adequately the issues which I raised in my previous email.
I have again checked the list of stakeholders and again cannot find any organisation which covers the same remit. We are therefore not in a position to approach any other stakeholder to “represent our interests”. One of our main purposes is research, for which we need direct access to stakeholder information.
I would be grateful if you could advise me of the appeal process against this decision.
NICE to me – 13 August
I have been passed your e-mail regarding registration as a stakeholder organisation for the ME/CFS guideline update. We very much welcome your interest in the guideline but, as set out in X’s original reply, based on the information provided your organisation does not appear to meet the criteria for registration. We’re unable to find any detail regarding Law and Health as an organisation, and the views and commentary on your personal website look to be broadly similar in nature to those from other registered organisations.
You stated that you require access to stakeholder information for research that you undertake. I’d like to reassure you that the minutes from the committee meetings throughout the guideline’s development, and the consultation versions of the guideline documents, are all made publically available on NICE’s website and access is not limited to stakeholders.
As X noted, at the point of consultation you will be still able to comment on all of the documents as a non-registered stakeholder, and those comments will be reviewed and considered by the guideline committee – it’s just that your comments will not receive a formal response and will not be published.
You note that your organisation provides advice and assistance to other groups and individuals and so we would encourage you to liaise with one of the national organisations which does similar work if you wish to submit comments through a registered organisation.
My reply to NICE – 15 August
Thank you for your email. As it mostly repeats the earlier points made by X, it does not take matters any further.
I am completely baffled as to why NICE should be using so much time (and therefore also public funding) trying to prevent me from becoming a legitimate stakeholder in the guidelines review process under the “organisations which fund and carry out research” criteria.
The evidence for this research (which we also fund) is clear and is contained within the Law and Health blog. It is also clear that it is not a “personal” blog, as you state (other than the category marked “Personal” in the sidebar). The title Law and Health appears at the top left of the screen, under the main picture, as it has done since I created the site in 2012.
Law and Health is neither “local” nor “regional”. The fact I provide assistance to other national stakeholder organisations indicates that its work is NOT covered by any other UK organisation.
NICE’s policy in dealing with this stakeholder application is proving to be opaque, inequitable and random in its application of the criteria. The effect of this approach is that I am apparently required to make representations retrospectively and in the absence of formal notice of the reasons for the refusal of the application.
As a statutory body and an executive branch of a governmental department, NICE is required to be fair, transparent and accountable. This stakeholder selection process is failing to meet those standards.
I would be grateful if you would advise me of the appeal process from this point.
NICE to me – 16 August
Thank you for your e-mail.
As noted in my previous e-mail, based on the information provided and on reviewing the content of your website, our understanding is that your organisation does not meet the criteria for registration – either as an organisation that funds or carries out research, or as a local organisation representing a group’s interests in the absence of a national organisation. As a result, we are unable to register Law and Health as a stakeholder organisation.
Just to confirm, you will still be able to access all of the committee meeting minutes which will be published on the NICE’s website during the development of the guideline. You will also have access to all of the guideline documents at the point of consultation on the guideline. You will be able to submit comments on the guideline at that point and those comments will be considered by the committee, however you won’t receive a formal response.
If you would like to like to make a complaint about the decision or about the way your registration application has been handled, please contact [Associate Director] in NICE’s Corporate office (or by mail at National Institute for Health and Care Excellence, 10 Spring Gardens, London, SW1A 2BU)
I replied as follows and then contacted the relevant Associate Director: this is the correspondence from that exchange:
My reply to NICE – 17 August 
This is not only about access to information but also proper recognition of a legitimate stakeholder. Your response is based purely on opinion and does not contain any reasoning behind your decision. 
 
The lack of a proper structure in your replies suggests that NICE is making up the rules as it goes along and then marking its own homework after the event. This allows an inappropriate degree of control over the process without any independent scrutiny or review mechanism .
As I said before, NICE is a publicly-funded body, created by statute, and an executive branch of a governmental department. As such, it is required to be fair, transparent and accountable. This stakeholder selection process fails to meet those standards. 
 
You will be aware from reading my blog that I have lived with ME, in varying degrees of severity, for 37 years. As a result, my resources – both in health terms and financially – are limited. I am therefore not in a strong position to pursue this process any further. Ultimately, it concerns a point of principle and the outcome will not change anything for the benefit of the millions of people who live with this illness worldwide. 
 
My main purpose for the years that remain to me is to continue to do as much as I can to improve the shocking conditions with which those with ME have lived for many decades. There would seem to be little to be gained from wasting more time and further exacerbating my health by pursuing this process. However, after due consideration, I have decided to send this email separately to the Associate Director as a formal complaint, not in the expectation of any progress, but because this situation needs to be addressed at the most senior level within the NICE structure. 
NICE to me – 20 August
Thank you for your below email, which I will investigate and respond to under NICE’s complaints policy. In line with the timescales within the policy, I hope to send you my response within 20 working days.
To inform my response, it would be helpful to know more about the research you fund and carry out in relation to this area.
My reply to NICE – 22 August
My complaint is that NICE is not operating in a fair and transparent manner in relation to applications to become a stakeholder in the ME/CFS guidelines in development process.
  • The original application online submission form is very short and, unless a screenshot is taken, no record of it remains with the applicant
  • As I recall, no proof of the organisation’s activities is required at the time of application
  • After submission of the application, NICE then apparently conducts its own investigation of the organisation without transparency or accountability in its methodology and in the absence of formal criteria. The investigation procedure is not made clear as a part of the process
  • In my case, NICE assigned me as a stakeholder to a different organisation (QMUL) without consultation or notification. I discovered this purely by chance after the event
  • The appeal/complaints procedure is unclear and appears unstructuredI am surprised, therefore, to be asked at this very late stage to justify Law and Health’s application to meet NICE’s requirements to become a stakeholder and without knowing what those requirements are. The blog on the website (link at the foot of this email) contains the information which supports my application as an organisation that funds OR carries out research. [continues…..]
  • Law and Health was created in 2012 to publish my research on the so-called “Secret Files on ME”. It now consists of Professor Robin Callender Smith and myself
  • The organisation was set up earlier than expected for reasons which are explained in the About section. It was therefore created before I had formulated in full how it was going to operate, including the title and full remit of the organisation 
  • Further research followed later, some of which is to be found in the “CATEGORIES” section of the blog. Inevitably, there is also a large amount of background work which is not documented  
  • As a result of the “Secret Files” work, people began to contact us (including from outside the UK), seeking advice and assistance. We always respond where possible and practical although the work is limited by my health 
  • We provide our own funding for specific projects. However, this is not shown in the blog for reasons of patient or client confidentiality and data protection
  • To the best of our knowledge, no other organisation carries out the same functions as Law and Health
As I have said previously, “NICE is a publicly-funded body, created by statute, and an executive branch of a governmental department. As such, it is required to be fair, transparent and accountable. This stakeholder selection process fails to meet those standards.”
The final cut…..
NICE to me – 31 August 
Thank you for responding with the further information below, which I have used to inform my review of your complaint about NICE’s decision not to register Law and Health as a stakeholder for the NICE guideline on ME/CFS. I have also reviewed your email exchanges with NICE’s Centre for Guidelines, the information on https://valerieeliotsmith.com/, and discussed your complaint with management in NICE’s Centre for Guidelines.I have undertaken my review in accordance with NICE’s published complaints policy and procedure, having had no prior involvement in this matter.
Firstly, thank you for your interest in engaging with the development of this guideline and I am sorry that you have found the experience unsatisfactory.
I am also sorry for the misunderstanding that led to you initially being registered on behalf of Queen Mary University of London (QMUL). I see that X explained the reason why this occurred in his email to you on 10 August, and apologised for the confusion caused. He also advised that anyone not registered as a stakeholder could still submit comments on the draft guideline.
I understand the central element of your complaint to be NICE’s decision not to accept Law and Health as a registered stakeholder, and its actions in doing so, which you believe represent a failure to act in a fair, transparent and accountable manner.
To manage the involvement of the large number of organisations who wish to contribute to the development of our guidelines, NICE has published the following criteria for establishing who can register as a stakeholder:
a)National organisations for people who use health and social care services, their families and carers, and the public
b)Healthwatch organisations
c)National organisations that represent health and social care practitioners and other relevant professionals whose practice may be affected by the guideline
d)Companies that manufacture medicines, devices, equipment or adaptations, and commercial industries relevant to public health, excluding the tobacco industry
e)Tobacco industry organisations who register to participate are automatically registered as respondents
f)Public sector providers and commissioners of care or services
g)Private, voluntary sector and other independent providers of care or services
h)Government departments and national statutory agencies
i)Organisations that fund or carry out research
j)Overseas agencies with a remit covering England
k)Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group’s specific interests.
Those not meeting the criteria to register as a stakeholder can still submit comments on the draft scope and guideline. But, due to resource constraints, NICE does not individually respond to these. The criteria are available on the NICE website, along with detailed information on how guidelines are developed.
Based on the information provided in your correspondence and on reviewing the content ofhttps://valerieeliotsmith.com/, the Centre for Guidelines decided that Law and Health does not meet the criteria for registration. The initial decision was based on criteria (a) and (k), with subsequent consideration of criterion (i).
As noted above, I have reviewed the information provided in your emails to NICE and your website, and having done so, I agree that the decision not to register Law and Health as a stakeholder under these criteria was appropriate and reasonable. In particular I noted the following statement under the “about” tab of the website:“Independent status: The views expressed in this blog are my own. I am not affiliated to any other group or professional body relating to ME or CFS issues.” Also, I was unable to find any reference elsewhere on the internet to Law and Health that would indicate Law and Health is operating as an organisation at a national scale, and I am mindful that, as per your email to me on 22 August, the organisation consists of two people. I also considered the additional information you helpfully provided to me about the research work undertaken, alongside the information on your website, but having done so, support NICE’s earlier decision this does not fulfil criterion (i). For while ‘research’ is not publicly defined for the purpose of this criterion, it typically relates to organisations undertaking peer reviewed primary research, such as universities.
I have considered the decision making process within the Centre for Guidelines and am satisfied this was appropriate, with views taken from senior management in the Centre, and NICE’s Public Involvement Programme.
In terms of independent review or scrutiny of NICE’s decisions about stakeholder registration, I would highlight that the complaints process provides for this, and details of this option were given to you by X. I have not previously been involved in this matter, and work in a separate part of NICE to the Centre for Guidelines, and so have reviewed this from an independent position. Also, the complaints process provides opportunity for further independent review and challenge of my response. Given this, and the significant amount of information on the NICE website about our guidance and the way we produce this, I believe NICE does act in a fair, transparent, and accountable manner.
I do however appreciate your concerns about the stakeholder registration process, and agree that it would be helpful if further information is publicly available on how NICE defines the stakeholder registration criteria. This would further help transparency and mitigate any perception that NICE is acting in an inconsistent manner, or seeking a post-hoc rationalisation of its decisions. As a result of your complaint, I am recommending this is considered further.
I am not pursuing this any further as there is nothing to be gained and my resources have reached their limit.
This is a deeply flawed process and does not inspire confidence for any of NICE’s activities which are, we must remember, intended to “provide national guidance and advice to improve health and social care”.
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Karina Hansen 8 (updated): the aftermath continues

August 10, 2018

GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update.

20161208_142745_resized

Karina in November 2016 shortly after her return home

UPDATE August 2018

On 9 July 2018, psychiatrist Dr Charlotte Emborg visited Karina at home. Dr Emborg was appointed by the court in Holstebro to make an independent assessment of Karina’s health and her capacity to manage her own affairs. It appears that Dr Emborg’s provisional report indicates the following important points:

  • Karina does not suffer from any psychiatric illness
  • She understands the role and purpose of her court-appointed guardian and she would like him to be removed from her case
  • She is capable of managing her own finances

As a result of this assessment, there no longer appears to be any justification for retaining the guardian in Karina’s case. However, it remains to be seen if/when Judge Lillian Lund Tinggaard at the court in Holstebro will make the appropriate directions for his removal.

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ORIGINAL POST from June 2018

Regular readers of this blog will already be familiar with Karina Hansen’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of myalgic encephalomyelitis (ME) patients generally. For new readers, and those needing a more detailed reminder of her story, there is a full summary at the end of this post.

Karina is a young woman from Denmark who became ill with the severe form of ME as a teenager. She was being cared for at home by her family but, in February 2013, she was forcibly removed by the state authorities and confined in an institution for three and a half years as a de facto psychiatric patient.  Her family members were not allowed to visit her and she was subjected to highly inappropriate treatment.

She was eventually allowed to return home in October 2016, in a far worse condition than when she had arrived at the institution. Both she and her family have experienced – and continue to experience – considerable trauma as a result of this state intervention.

I have recently received an update on Karina’s situation from Bente Stenfalk of Borgerretsbevægelsen (Civil Rights Movement Group in Denmark). Bente has been closely involved in Karina’s case since 2015. I have paraphrased Bente’s statement (with her permission) for clarification purposes. It does not make for reassuring reading:

June 2018

The case of Karina Hansen continues to be fraught with challenges. However, there has been one new positive development: Karina’s psychiatrist, Dr Mogens Undén recently prepared a fresh statement on her behalf and, as a result, she is now receiving a five-year pension.

Conversely, there has been no further progress in the ongoing court proceedings relating to the removal of her official guardian [appointed by the court in the mistaken belief that Karina lacked capacity to make her own decisions]. We are still waiting for the judge at the local court in Holstebro to consider Dr Undén’s new statement on Karina’s condition at the next hearing.

So far, the judge in Holstebro has refused to allow the removal of the guardian in Karina’s case. She recently ordered that a medical officer from the region visit Karina at home to check her living situation. However, the organisation that deals with the provision of such medical officers had closed down so there was no one available to carry out the judge’s direction. I tried to find out who was in charge of providing medical officers in the Region of Midjudland but they sent me to the North Jutland Region – who then sent me to the Board for Patient Safety. Months later, I am still waiting for a reply from the Board.

As a matter of the utmost importance, I have requested that no doctor who is unknown to Karina’s family visit her at home. The last time unknown doctors came to her home, she was forcibly taken away and incarcerated for three and a half years. There must be no repetition of such traumatic events.

Nevertheless, the judge has now decided that psychiatrist Dr Charlotte Emborg should visit Karina at home. Apparently, Dr Emborg will not make a formal statement; she must simply be satisfied that Karina is generally well and has the capacity to answer questions about her life and situation. It would seem that the judge has disregarded our request not to send an unknown doctor to Karina’s home.

It also appears that the judge did not listen to our recommendation that, as Karina’s psychiatrist, Dr Undén’s opinion should be given priority in her case. I had asked the court in Holstebro to treat his additional statement accordingly but I did not receive a formal response. At one point, a psychiatrist from the Research Clinic for Functional Diseases was proposed but then vetoed by Karina’s lawyer, Per Broe-Andersen as not being sufficiently independent. Eventually, Dr Emborg was accepted by all parties.

We are now at the stage where many people (including me) have observed Karina answer relevant questions in writing. These people include Karina’s parents + other members of her family, her psychiatrist Dr Undén, her lawyer, local physician Dr Stig Gerdes, her official guardian Kaj Stendorf and several people from the municipality.

It is unclear why the judge in Holstebro is failing to expedite the removal of Karina’s guardian. Mr Stendorf himself agrees that Karina no longer needs his intervention. However, this has been the consistent pattern with all state and judicial involvement in Karina’s case over many years. A change of official attitude is long overdue – before even more damage is done to Karina and her family.

Karina’s case is a national disgrace.

~Bente Stenfalk

********************* 

KARINA’S STORY

Karina lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).

[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.]

ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model, often in combination with unsuitable psychotropic medication. Despite often extreme physical and cognitive impairment, patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no single universally agreed diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.

Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.

Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will. Her condition deteriorated rapidly after her admission to the Clinic and shortly afterwards, she was found by the local court to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. 

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

During the course of 2016, I wrote a series of articles chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.

On Monday 17 October 2016, after three and a half years of incarceration, Karina was able to return home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs. The trial period passed without incident; Karina was home at last – but with a future changed forever.

********************

Disclosure

I have lived with the illness ME since 1981. For more information see About.

Karina Hansen 8: The Aftermath Continues

June 25, 2018
20161208_142745_resized

Karina in November 2016 shortly after her return home

This post has now been deleted and replaced with an updated version at:

Karina Hansen 8 (updated): the aftermath continues

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Quick reminder

Karina is a young woman from Denmark who became ill with the severe form of myalgic encephalomyelitis (ME) as a teenager. She was being cared for at home by her family but, in February 2013, she was forcibly removed by the state authorities and confined in an institution for three and a half years as a de facto psychiatric patient.  Her family members were not allowed to visit her and she was subjected to highly inappropriate treatment.

She was eventually allowed to return home in October 2016, in a far worse condition than when she had arrived at the institution. Both she and her family have experienced – and continue to experience – considerable trauma as a result of this state intervention.

Read more in the updated version at Karina Hansen 8 (updated): the aftermath continues …..

 

PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version]

February 20, 2017
Still looking for the RESET button...

Still looking for that RESET button…

October 2017: this was a revised version of my original post in January (paragraph entitled “Lessons?” rewritten to clarify the issues raised) + I have also now updated it to include the unexpected decision in September by the UK’s National Institute for Health and Care Excellence (NICE) to fully review and update the guidelines for diagnosis and treatment of CFS/ME (sic).

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PAUSE

This year will bring some changes which mean I need to step back from my research and advocacy work. This work has covered a number of different topics and this is reflected in the sub-heading of this blog “Law and health; due process and civil society“. However, my main focus has been on issues facing the international community of people who live with the illness myalgic encephalomyelitis (ME) – sometimes also conflated unhelpfully with the condition “chronic fatigue syndrome/CFS”.

I have lived with ME since 1981 (possibly longer) and began to learn about its history and pathology thereafter, although I wasn’t formally diagnosed until 1989. In 2009, I started increasing the scope and range of my research online and in 2012 I set up this blog in order to publish my work on the so-called “Secret Files on ME“.

Starting this blog was not a planned decision but rather a rapid response to some misinformation about the “Secret Files” which was circulating online (how little has changed). Since then, I have used it as a platform to explore and publish more information about a variety of topics. As is the case for all advocates who themselves live with ME, the amount of work I have been able to achieve has been severely restricted by the illness.

For more detail about my qualifications and experience see the About section of this blog.

Changes 

My husband, Robin Callender Smith, and I have been planning for some time to move from the UK to a warmer climate (see my post “Ice Cream and Hypothermia” for why that is). We are now at the stage where our combined age and health issues mean that we need to do this very soon. Having laid some of the groundwork over the last year, I now need to direct my already limited resources on making the move and so I will be unable to continue my close involvement in ME advocacy work.

I will not be giving up my work completely and there may still be more blog posts in the future. I will continue to monitor events and progress relating to the illness and I intend to keep open the channels of communication which I have established with other advocates in the international ME community and which I value greatly.

Further updates on the main topics featured in this blog 

I have covered a number of different topics here. You can see them in the list of “Categories” by scrolling down the right-hand sidebar. Overall, I have written about three main subjects:

  1. The Secret Files on ME: this is where the blog started. I completed my work on getting the files opened up and made publicly available. You can read the full story in the posts in that category. You can download the actual files from The Secret Files Unwrapped Part 1: the importance of fair and accurate records and The Secret Files Unwrapped Part 2: Control, not Collaboration (one file per post).
  2. The PACE Trial controversy: this category contains the greatest number of posts, partly as a result of collaboration with my friend and colleague, academic and journalist David Tuller. My work is about the process relating to Freedom of Information requests for data from the trial. Due process is a vital component of any functioning democracy (and with the shifting tectonic plates of the new geopolitical climate, something which will need increased scrutiny and protection in the foreseeable future) which is why I have explored it here. David has written extensively about the flawed science behind PACE; Vincent Racaniello at Columbia University, NYC, hosts some of David’s work on PACE in a series of posts on Virology Blog.
  3. Karina Hansen, “Prisoner of Denmark”: Karina is a young Danish woman, diagnosed with ME, who was removed forcibly from her family home in 2013. She was relocated in a “neurocenter” as a de facto psychiatric patient against her wishes and those of her family. She remained there for three and a half years. In the early part of 2016, I wrote a series of articles examining her story. In October 2016, she was allowed to return home with her family. Her ordeal may not be over yet and I will continue to remain involved in it (see further posts in the Karina Hansen category). There are ongoing public updates in these Facebook groups – Karina-sagen (Danish/English) and The ME Global Chronicle (English)

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REVIEW 

In August 2012, I wrote this in my first post on the “Secret Files”:

My opinion is that there are two areas where action is needed: first would be a high profile, carefully-managed and sustained media campaign to address government policy issues and reverse the mostly negative image of ME … patients. Secondly, consideration should be given to the viability of legal action on behalf of ME … patients. This is an extremely complex area with almost no legal precedent that I have been able find so far. I have my own views on both media and legal issues but, to have any chance of success, both campaigns would need enormous energy, commitment, generous funding and – above all – considerable professional expertise.

Much has happened since I wrote that post but the overall situation for most patients in the international ME community has changed very little – and this has been the case for decades.

  • Media – I discussed this in The Secret Files Unwrapped: Part 1 and, in November 2016, I wrote a lengthy Facebook post which I had intended to formalize into a blog post here but never managed to complete the necessary editing. The Facebook post (and the comments beneath it) set out a more detailed discussion of the continuing absence of a large-scale, reactive/proactive media infrastructure for ME advocacy in the UK and the consequences of that absence. The post can be viewed here.
  • Legal – from a legal (and medical) perspective in the UK, the NICE guidance has remained one of the biggest obstacles to progress. As things stand, the guidance provides a substantial defence against any legal action which might be initiated by ME patients who have been harmed by undertaking treatments recommended in the guidance, such as Graded Exercise Therapy or Cognitive Behavioural Therapy. An attempt in 2009 at securing a judicial review of the guidance failed disastrously.

I have been urging for some time that the ME community should be lobbying for an expedited review of the NICE guidance as a priority, although others have been less enthusiastic. However, NICE recently announced that there will be a decision later this year on whether or not a full review of the guidance should be undertaken.

(UPDATE October 2017: it was announced last month that NICE WILL undertake a full review of the guidelines, contrary to the decision expected by most stakeholders).

****************************************

REFLECT

I had planned to finalize a post exploring the legal landscape for ME patients in the UK as I have since done more work on the topic. However, current circumstances mean that this will not happen in the foreseeable future.  And, as I observed in a comment in the Facebook post, “there is also the fact that my experience over the last few years suggests that advice from experts is frequently not welcome.” I have also heard others describe similar experiences.

It would seem that my innocent remark from August 2012 in the inaugural “Secret Files” post that “to have any chance of success, both campaigns [ie. media and legal] would need…..considerable professional expertise” was uncomfortably accurate both in reflecting on, and predicting, continuing roadblocks to progress.

I would like to be able to say that my experience with the ME advocacy community has been a positive and edifying one but this has not always been the case. In some instances, the community agenda appears to be set by a fractious, clique-driven culture which is surprisingly resistant to expert advice. This resistance seems to be founded on a conviction that if the requested advice doesn’t chime with accepted community wisdom then it must be without merit and those offering it should be marginalized.

This closed mindset results in a huge loss of knowledge and experience which could be valuable to the broader community. More worryingly, the inevitable consequence of this approach is the continuing failure by the community to get its message across where it is most needed ie. outside the ME echo chambers and into the so-called “corridors of power”. Privately-funded scientific research is making great strides but until there is a universal recognition of ME (which must encompass both the disease itself and its shocking history) by those who walk those corridors, real progress will continue to be painfully slow.

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Lessons? 

Of course, it is much easier to criticize the work of others than to concentrate personal efforts towards making genuine progress. Nevertheless, even a cursory study of the history of ME (and “CFS”) clearly demonstrates two continuing obstacles to that progress:

  1. The international advocacy community is up against a politically-generated anti-ME (and “CFS”) culture which is far more strident than might be considered rational. This is particularly evident in the disproportionate attacks on a disempowered and vulnerable patient group and the extraordinarily rabid defence of the status quo (ie. the psychosocial, rather than biomedical, approach to treatment).
  2. The second (and more challenging) obstacle is that the ME community needs to acknowledge that, whatever we have been doing in recent decades to dismantle the roadblocks, our achievements have been limited.  A different approach is therefore required, one based on on a brutally honest evaluation of our history, and a professional assessment of what is needed to change perceptions at every level.

Although I am stepping back from my ME research and advocacy work (see above), I continue to monitor events within the ME community. It is deeply frustrating and disheartening to see the same mistakes being endlessly repeated because of our collective failure to address these issues.

The PACE Trial provides a current example of the main problem. The trial has been thoroughly discredited. Unfortunately, because we do not have an established media platform* from which to disseminate and support that message, few people outside the ME community are even aware of that fact. Moreover, even amongst those who are aware of it, many are reluctant to accept it because of the systematic reputational damage to the ME community which has accumulated over many years and which continues to undermine our credibility, particularly in the UK.

THE BIGGER PICTURE

In February 2015, I wrote this in my post “The IOM: Death by Acronym and Epic Media Fail“:

Whatever happens next is certainly too late for the millions of [ME] patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes. And what assurance is there that anything concrete will happen during the next thirty years? Another generation of us – including me – will have died before then. That sucks.

The exhortation to “speak truth to power” has become a commonly used slogan. The actual use of this concept to achieve real results is a complicated and nuanced process, especially if those doing the speaking are themselves without power. The heartbreaking patient testimony at the US Department of Health and Human Services’s CFSAC meetings over the years bears witness to this only too well.

The best methods of addressing this problem are frequently counter-intuitive. That is why any community seeking to facilitate meaningful change must ensure that it is making optimum use of all its resources and listening to expert advice. Only then can its members reflect on lessons learned and begin devising appropriate strategies for dismantling those roadblocks and moving towards the bigger picture.

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*See my comments below in response to Barbara McMullen for more detail on how that could be achieved.

PAUSE-REVIEW-REFLECT: towards a bigger picture?

January 16, 2017
Still looking for the RESET button...

January 2017 – looking for the RESET button…

One month on, I rewrote this post to clarify certain points. The revised version can now be seen as the next post on this blog. The main changes are in the paragraph towards the end entitled “Lessons?“.

The new version can be viewed at PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version]

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Karina Hansen 7: Update and Urgent Appeal

December 7, 2016
Karina with some of her birthday cards - November 2016

Karina with some of her birthday cards – November 2016

LINK FOR DONATIONS TO KARINA’S LEGAL FUND: Go to this link at Save4Children and follow the instructions. If you scroll down the page there are links for specific countries/languages.

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Regular readers of this blog will be familiar with Karina Hansen’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally.

For new readers, and those needing a reminder, there is a full summary at the end of this post.

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Thank you to everyone who sent birthday gifts

It was Karina’s 28th birthday on 7 November, a few weeks after her return home. She received a wonderful array of cards, flowers and other gifts from all over the world. [Update 9 December 2016: the Hansen family have very kindly sent a picture, above left, of Karina with some of her cards].

Karina was able to read all the cards. She and her family wish to express their gratitude and appreciation to everyone who took the trouble to send a card and/or a gift. They are unable to reply to everyone individually but want to make it clear that the support which they have received means an enormous amount to them.

The current situation (December 2016)

On 17 October 2016, after three and a half years of involuntary detention as a de facto psychiatric patient in a Danish clinic, Karina finally returned to her family home from which she had been forcibly removed in February 2013.

Karina is very happy to be back at home. She is becoming more mobile, with the aid of a walker, and her ability to communicate is improving, mostly through writing at the moment. She is even beginning to smile again sometimes.

Karina and her family are gradually adjusting to their changed circumstances and trying to process everything that has happened to them. However, it is inevitable that the traumatic events of last few years have taken an enormous toll on all of them. Her long-term situation remains to be determined; she and her family are still living with great uncertainty about the future as a result of excessive state intervention in their lives (see previous post).

In my post of 26 October 2016, I mentioned that psychiatrist Per Fink (see below) and the clinic where Karina had been incarcerated since 2013 had been contacted for comment about her return home. As of today, no reply has been received.

APPEAL FOR DONATIONS TO THE LEGAL FUND

There have been considerable ongoing legal costs relating to Karina’s circumstances over the last few years. A large amount of those costs are still outstanding and there are new ones now beginning to accrue in relation to  prospective legal action.

There are many issues still to be resolved regarding Karina’s future and that of her family. The immediate  priority is to resolve the matter of her court-appointed guardian (see below and earlier posts). Until that happens, nothing else can be considered.

The fund currently stands at approximately 4000 euros. Using exchange rates calculated on 4 December 2016 (amounts are rounded up), this equals:

  • 4300 US dollars or
  • 3400 British pounds or
  • 30000 Danish kroner

As yet, there is insufficient information to be able to set out exactly how much will be required to settle the outstanding debts nor how much any future legal action will cost. However, the specialist legal advice and assistance necessary here is extremely costly. It is very clear that the costs will far exceed the amount which is currently in the fund.

The fund is a vital resource – and Karina’s family are extremely grateful to those who have already donated – but it is a tiny fraction of what is required.

Any amount – however small or large – which readers of this blog can contribute will be received with enormous gratitude (SEE LINK AT TOP OF THIS POST). The donations to this fund are exclusively for use towards paying the legal expenses relating to Karina’s treatment by the state over recent years.

Thank you.

********************

Karina’s story 

Karina lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).

[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.]

ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model; patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no recognized diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.

Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.

Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will; she was found by a court subsequently to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. Her condition deteriorated rapidly after her admission to the Clinic.

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

During the course of 2016, I wrote a series of articles chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.

On Monday 17 October 2016, after three and a half years of incarceration, Karina was able to return home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs. The trial period passed without incident; Karina was home at last – but with a future changed forever.

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