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TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees)

August 16, 2016

HMCourtTribunalServicePicThe First-Tier Tribunal judgment in this case  (click on that link to read full judgment) has just been published. [Update: the judgment was removed on 1 September for minor corrections. It was reinstated on 7 September but with a different url]. 

QMUL’s appeal has been roundly dismissed and strongly criticized in a majority decision. The Tribunal has therefore decided that the requested data from the PACE trial should be released.

I have just skimmed the 48 pages of the judgment and so have only taken in a small amount so far. However, it appears that this is a defining moment for the international ME community and the PACE Trial. Alem Matthees (the original requestor of the data) has done an extraordinary job.

However, it is important to remember that, in theory,  QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so it will be a while longer before we can be certain that this judgment will stand.

I will write a longer post with a more detailed analysis in due course (health permitting).

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Background note for new readers

In March 2014, Mr Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, Mr Matthees complained to the Information Commissioner (IC) who, in October 2015ordered that the information be disclosed. QMUL appealed against the IC’s decision; that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. QMUL and the IC were legally represented and QMUL called witnesses to give evidence. Mr Matthees had been joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients. There are an estimated 20 million patients worldwide although conclusive figures do not exist.

The results of the PACE trial promote psychosocial treatments (Graded Exercise Therapy and Cognitive Behavioural Therapy) which many patients find either ineffective or actively harmful. Constructive biomedical research into ME has been sidelined as a consequence (and has been for decades).

Patients have been using FOIA to try to obtain the trial data in order to understand how the PACE results were achieved. However, most requests have been denied, requestors declared vexatious and, five years on, most of the data is still unavailable.] 

More detailed information on the history and progress of this case can be found in earlier posts in the PACE Trial category of this blog – scroll down right-hand sidebar.

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Disclosure

I have lived with the illness ME since 1981. I currently (2016) have a courtesy academic title at QMUL as Visiting Scholar at the Centre for Commercial Law Studies. I have no connection with the PACE Trial other than as a patient and observer. For more information see About.

 

 

Short Update on the Progress of the PACE Trial Judgment (QMUL v IC and Matthees)

July 15, 2016

HMCourtTribunalServicePicAn inquiry was made yesterday to the First-Tier Tribunal (Information Rights) concerning the progress of the long-awaited judgment in this case. The following response was received almost immediately:

The judge is still drafting the decision and I do not have any indication as to when the final decision will be promulgated.

So – still no news as of 15 July 2016.

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Background note for new readers

In March 2014, Mr Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, Mr Matthees complained to the Information Commissioner (IC) who, in October 2015ordered that the information be disclosed. QMUL appealed against the IC’s decision; that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. QMUL and the IC were legally represented and QMUL called witnesses to give evidence. Mr Matthees had been joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions. Judgment is awaited.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients worldwide.

The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful. As a result, some patients have been using FOIA to try to obtain the trial data in order to understand how these results were achieved. However, most requests have been denied and, five years on, most of the data is still unavailable.] 

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More detailed information on the history and progress of this case can be found in earlier posts in the PACE Trial category of this blog – see lower right-hand sidebar.

 

Nick Barber, Tom Hickman and Jeff King: Pulling the Article 50 ‘Trigger’: Parliament’s Indispensable Role

June 27, 2016

Re-blog from the UK Constitutional Law Association, following the UK’s referendum on 23 June 2016 in which a small majority voted to leave the European Union (EU). 

UK Constitutional Law Association

Barber-Hickman-KingIn this post we argue that as a matter of domestic constitutional law, the Prime Minister is unable to issue a declaration under Article 50 of the Lisbon Treaty – triggering our withdrawal from the European Union – without having been first authorised to do so by an Act of the United Kingdom Parliament.  Were he to attempt to do so before such a statute was passed, the declaration would be legally ineffective as a matter of domestic law and it would also fail to comply with the requirements of Article 50 itself.

There are a number of overlapping reasons for this. They range from the general to the specific. At the most general, our democracy is a parliamentary democracy, and it is Parliament, not the Government, that has the final say about the implications of the referendum, the timing of an Article 50 our membership of the Union, and…

View original post 2,950 more words

QMUL v IC + Matthees (PACE Trial) Part 2: Documents, Open Justice and Open Data

May 16, 2016

HMCourtTribunalServicePicNOTE: the judgment in this case is due any time now. This post provides a short case history and details of more documents made publicly available by the Tribunal.

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This post follows on from my previous posts QMUL v the Information Commissioner + Matthees (PACE Trial) Part 1 and  QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data. 

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Case history and background

In March 2014, Mr Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, Mr Matthees complained to the Information Commissioner (IC) who, in October 2015ordered that the information be disclosed. QMUL appealed against the IC’s decision; that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. QMUL and the IC were legally represented and QMUL called witnesses to give evidence. Mr Matthees had been joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions. Judgment is awaited.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients worldwide.

The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful. As a result, some patients have been using FOIA to try to obtain the trial data in order to understand how these results were achieved. However, most requests have been denied and, five years on, most of the data is still unavailable.] 

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The current proceedings

This case (which involves a request for eight subsets of trial data) is unusual in that it is only the third such request which has been appealed as far as this stage. Neither of the first two cases, both from 2013, was successful (read judgments at Courtney and Mitchell). This case differs from the other two in that 1) the IC was resisting QMUL’s appeal and 2) it was a live hearing with witnesses giving oral evidence. This was not the situation in the previous cases.

So far, there have been 37 requests for information to QMUL about the PACE trial; many of the requestors have been deemed “vexatious” which means the information does not have to be supplied.

The April Tribunal hearing and further inquiries

Those of you who read my previous post may recall the following extract:

On 17 April, I contacted the Tribunal Registrar and requested the documents for this case which were publicly available [as I was unable to attend the hearing]. This was refused (other than the IC’s decision notice which I already had). I repeated my request; again, it was refused.

On 19 April, I contacted the President of the General Regulatory Chamber (GRC) who has oversight of the Tribunals. I explained that this response was unacceptable and requested a full review of my application. He responded promptly and decided that I should be sent some of the public documents [see previous post for details and link], with a further review after the hearing was concluded.

On 25 April, I contacted the GRC President again, requesting the further review and asking for details of any departure from the usual principles of Open Justice during the course of the hearing.

On 3 May, I received a list of further documents which I will attach at the end of this post. My question about Open Justice was not addressed at all.

Open Justice and media coverage

On 6 May, I wrote again, asking for the Open Justice point to be addressed, clarifying that what I wanted to know was whether or not a reporting restriction order had been made at the hearing and, if so, what were the terms and what reasons were given. The general rule in British courts and tribunals is that anyone present can make a fair and accurate report of what happens in open sessions, unless otherwise stated by the court in a reporting restriction order, in which case reasons should be given in open court.

It is assumed that the Tribunal members will be impartial in their approach to the evidence before them. It therefore follows that restrictions on what can and cannot be reported about the hearing might trigger alarm bells within any group of people who might be directly affected by the Tribunal’s rulings. One would not normally expect the open sessions of a routine hearing about a clinical trial to require restrictions on reporting.

Given the amount of high profile UK media space which has been dedicated to the still unchallenged vilification of ME patients in recent decades (in contrast to the minimal reporting which has covered the real issues around the illness and the patient community) inevitably this is a matter which is of the utmost importance to patients, their families, carers and supporters.

On 11 May, I received the following reply from Brian Kennedy QC, the judge at the Tribunal hearing:

Dear Ms.Valerie Eliot Smith,

In response to your query;  ” —- whether there was any departure from the usual principles of Open Justice at the Tribunal hearing on 20-22 April — ” the answer is that there was not.

In relation to your interest in the subject matter of the appeal in question, and as a gesture of goodwill to you, (on the basis that you informed the Tribunal that you were unable to attend the appeal due to ill health), this Tribunal took the unusual step of asking the parties to the appeal to identify, in as far as they could, access to material that was in the Open bundle of material before the Tribunal. As a courtesy to the Tribunal, the parties kindly drew up the attached list for the benefit of any members of the public who wished, like you, to attempt to access such material. It is not an exhaustive list and in any event has only been provided as a courtesy and by reason of your request. It is not the function of the Tribunal to provide advice or access to material that the parties refer to in an appeal. The courtesy shown to you in this regard should not be taken as a response that the Tribunal or the staff therein have any duty whatsoever to undertake.

Reporting restriction?

So the answer about any reporting restriction is still not entirely clear but, in the absence of any assertion to the contrary, it seems that no order was made. In other words, those attending were free to report as they wished.

However, anecdotally, I understand that some of those attending were given the impression that they were prohibited from reporting on or discussing anything which took place during the hearing. One attendee told me this:

The main thing that surprised me was that the judge threatened any observer recording or even taking notes (via computer, hand, etc.) with contempt. He also warned sternly against anything about what happened in the hearing appearing anywhere online, social media, etc.

It appears that the issue of note-taking was clarified the following day and that this was allowed, albeit in a limited fashion.

If this was the climate of the hearing, it seems as though (in the absence of a formal reporting restriction order with full reasons given in open court) the usual principles of British Open Justice were temporarily suspended. And the inevitable questions arise, at whose instigation did this take place and for what reason? Incidentally, if a reporting restriction order was made, then I may well be in breach of it now, despite my best efforts to establish its existence and terms.

A matter of courtesy?

Judge Kennedy wrote: “The courtesy shown to you in this regard should not be taken as a response that the Tribunal or the staff therein have any duty whatsoever to undertake”.

Point taken; the Tribunal staff are severely over-stretched as it is and couldn’t possibly cope with requests of this nature on a regular basis (although I doubt they receive them very often). However, “The courtesy shown to you in this regard…” needs clarification.

On 19 April I framed my request in these terms: “I write a regular blog on legal and health-related issues. I would like to be able to write about this Tribunal hearing as an informed commentator. However, I am disabled by virtue of living with chronic illness and so cannot attend the hearing. I am therefore requesting that an accommodation be made for my disability.”

I was not seeking any kind of “courtesy” or favour from the Tribunal. I was asking for an accommodation for the disability which prevented me from attending the Tribunal proceedings in full. The Equality Act requires that proper consideration be given to such a request and reasonable adjustments made. It also helps if the response is not couched in terms designed to make the recipient feel uncomfortable about having asked.

List of publicly available documents 

A note containing the list of documents has been sent to me. It consists of articles, references to public information sites (such the NICE Guidelines), decision notices and judgments. No skeleton arguments or witness statements were included although I understand from the note that these were made available as part of an Open Bundle for those who were able to attend the hearing in person (although the bundle could not be removed or copied). This is unfortunate, as without access to at least the skeleton arguments, it is not possible to understand how, or if, the listed documents were used within the context of QMUL’s submissions.

There are links provided in the document list. However, the ones which I have checked don’t always work because they are inaccurate or incomplete. It may depend on the format/browser in which you view them. You can download the list from the link at the end of this post.

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The bigger picture and why all of this matters 

The PACE trial has had a severely adverse effect on the treatment of many ME patients all over the world. This particular Tribunal case is of unusual significance for reasons explained above. Judging by the viewing figures on this blog, people from many different countries are following its progress.

This Tribunal hearing broadly encompasses issues of law, media, transparency/open justice, science/academia, ethics, data sharing and – perhaps most important of all – the ever-increasing trend towards open data. It could quite reasonably be argued that, where a particular study is unusually controversial, the best way of addressing the issue is to make all the data available, with redaction/anonymisation where appropriate. If that were to happen, then all the interested parties could participate in the debate on an equal footing and in a properly-informed manner.

In the five years since the publication of the PACE trial, I have counted at least ten different sections of FOIA which have been used by the trial’s authors as reasons for not disclosing information. On any view, that seems a little excessive.

The judgment

The judgment determining whether or not the data will be released should be out shortly. In general, judgments are usually published within three weeks of the conclusion of the hearing but there is some flexibility in the timing. Any of the parties can appeal against the judgment but on a point of law only.

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Note: for more information about my background see the About section of this blog.

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DOWNLOAD the list of publicly available documents from the link below:

(NB. If you are using documents from this blog elsewhere, please quote the source and credit my work. Thank you.)

MattheesTrib OPEN LIST OF DOCUMENTS

 

 

QMUL v the Information Commissioner + Matthees (PACE Trial) Part 1: Tribunal hearing and Open Justice

April 28, 2016

HMCourtTribunalServicePicThis post follows on from my previous short post QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data. 

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Brief re-cap

In March 2014, Mr Matthees – the original requestor (OR) – sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by the relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, the OR complained to the Information Commissioner (IC) who, in October 2015, ordered that the information be disclosed. QMUL appealed against the IC’s decision (download the Notice of Appeal from 002 231115 Notice of appeal); that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. The OR asked to be joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients worldwide. The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful – hence their interest in accessing the data.]

The Tribunal 

The composition of the Tribunal was as follows:

  • Brian Kennedy QC – legally-qualified chair of Tribunal
  • Professor Darryl Stephenson – lay member
  • Nigel Watson – lay member

QMUL was represented by specialist QC, Timothy Pitt-Payne, instructed by solicitors Mills & Reeve LLP. The IC was represented by junior barrister Rupert Paines, instructed by solicitor for the IC.

Unfortunately, the Tribunal is not a court of record so there is no official transcript or recording of the proceedings, other than the notes taken by the Tribunal members and members of the public/press. All court proceedings are governed by the principles of Open Justice.

Open Justice (pre-hearing)

On 17 April, I contacted the Tribunal Registrar and requested the documents for this case which were publicly available. This was refused (other than the IC’s decision notice which I already had – see above). I repeated my request; again, it was refused.

On 19 April, I contacted the President of the General Regulatory Chamber (GRC) who has oversight of the Tribunals. I explained that this response was unacceptable and requested a full review of my application. He responded promptly and decided that I should be sent some of the public documents, with a further review after the hearing was concluded (download the short decision notice from 032 200416 PL Decision).

On 25 April, I contacted the GRC President again, requesting the further review and asking for details of any departure from the usual principles of Open Justice during the course of the hearing. Once I have received a reply, I will do an update. I understand that the Tribunal is taking further written submissions until 29 April.

I have uploaded the remaining documents at the end of this post. However, there are others which I would expect to be made generally available as part of the hearing (subject to the redaction of any Closed Material). If nothing else is forthcoming, then I would expect reasons to be given as to why that is the case.

Open Justice (at the hearing) 

I was unable to attend the hearing so I won’t speculate on what happened there. Anecdotally, I understand that QMUL’s witnesses gave oral evidence (which may have elaborated and/or expanded on their original witness statements, as often happens) and there were submissions by counsel for QMUL and the IC, in both open and closed sessions.

Unless a reporting restriction order is imposed by the judge, the general principles of Open Justice in the UK allow for full reporting of the open sessions of the proceedings. This can extend to real-time reporting on social media via electronic devices if permission is granted by the judge. Any departure from these principles should be explained in full by the judge, with reasons given in open court.

It appears that social media was being monitored – both before and during the hearing – for evidence of ME-related activity. In the case of specific PACE-related activity, this monitoring had already become apparent, as in, for example, paragraphs 22-26 of this decision notice from March 2015. Such monitoring is now common practice in litigation generally.

Once the judgment is published (sometime within the next few weeks) it will be possible to analyse both the hearing and the case in more detail.

Appeals – a reminder 

Whatever the result of the hearing, any of the parties can appeal to the Upper Tribunal on a point of law only. Notice of Appeal should normally be served within 35 days of the date on which the judgment is sent to the parties.

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Disclosure

I have lived with the illness ME since 1981.

I am a Visiting Scholar at the Centre for Commercial Law Studies at QMUL. I have nothing whatsoever to do with the PACE trial other than as a patient for whom no medical treatment is available, largely as a result of the trial’s purported findings.

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OTHER PUBLIC DOCUMENTS RECEIVED FROM THE GRC PRESIDENT SO FAR (as downloads):

NB. If you are using documents from this blog elsewhere, please quote the source and credit my work. Thank you.

IC’s response to QMUL’s Notice of appeal – 004 120116 IC Response

Original requestor’s response – 010 090216 R2 Matthees_Main_Response

Official list of hearing attendees – Hearing Attendees

 

QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016

April 14, 2016

HMCourtTribunalServicePic

What

Full details of the history and substance of this case can be found in my earlier post Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE trial data.

If you would like to learn more about how the process works, you can do so here FOIA: a Briefing Note + how many PACE requests?

When

On 20 April, the First-Tier Tribunal (Information Rights) (page 6 of link) will hear Queen Mary University of London (QMUL)’s appeal against the Information Commissioner’s recent decision regarding the release of data from the controversial PACE tria

Where

The hearing will take place in central London at the Residential Property Tribunal, Court H, 10 Alfred Place, London WC1E 7LR (just off Tottenham Court Road).

The hearing

It is listed to last for three days. This is because QMUL (with the benefit of full legal representation) has requested a full hearing with witnesses to give live evidence, as is their right. The alternative shorter process is where the Tribunal considers the evidence on the papers alone and makes a decision from that without hearing from witnesses. This suggests that QMUL is taking this case very seriously.

Hearings are generally open to the public, unless the Tribunal is considering “closed material” (often the core subject matter of the case) at which point the court room will be cleared. That may or may not happen in this case.

However, it is important to remember that, as is the case with all legal proceedings, changes can – and do – frequently happen right up to the last minute.

The parties 

The parties to this case are:

  • QMUL – the Appellant
  • The Information Commissioner – First Respondent
  • Alem Matthees – Second Respondent. Mr Matthees (the original requestor of the data) requested that he be joined as a respondent to the proceedings, as is his right.

Any parties to the case who are unable to attend the hearing but wish to take part can request participation a live videolink.

The Judgment 

The usual procedure is that the Tribunal hears the evidence and legal argument and then comes to a decision afterwards. The Tribunal consists of three people – a judge as the legally-qualified chair plus two lay members.

Judgment is not normally given at the time of the hearing as the Tribunal members have to discuss their conclusion. The judge will then write up the judgment which is generally served on the parties within three to four weeks from the conclusion of the hearing.

Appeal

Any of the parties can appeal to the Upper Tribunal so the process is not necessarily over yet. The right to appeal is not automatic at this stage but is on a point of law only.

If the Tribunal orders that the information be disclosed, this must normally be done within 35 days of the date when judgment is served on the parties OR notice of appeal must be lodged.

Judgments are public documents and are made available via the Tribunals website.

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Karina Hansen 4: Timeline, Torture and Tragedy

April 4, 2016

KarinaHansenStockPic

BREAKING NEWS

It was confirmed yesterday that Danish High Court Attorney Cristina Poblador from Homann law firm in Copenhagen has agreed to take this case. This is wonderful news and hopefully will begin to change the narrative of this tragic story. 

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This post follows on from my previous posts Karina Hansen 3: Update March 2016  (KH3) and Karina Hansen 2: the Ghost in the Room (KH2). For the full background to this story, please refer to KH2.

A brief re-cap 

Karina (pictured above left) lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME). The diagnosis was disputed and in February 2013, then aged 24, she was forcibly removed from home, where her family had been caring for her. She was taken to Hammel Neurocenter (part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital).

Several doctors have been involved in her case but psychiatrists Nils Balle Christensen and Per Fink have dictated the overall course of her treatment at Hammel. Since shortly after her initial detention, she has been classed as a “voluntary” patient; 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.

Three years on, Karina remains a de facto prisoner of the state. She has been moved to a nearby “rehabilitation centre” 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 nevertheless in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. She did not appear to recognise her own father.

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Timeline of events

In an attempt to make sense of what has happened to Karina, I have constructed a Timeline. It is followed by some important explanatory notes.

 

THE TIMELINE

  • 2006 Karina first becomes ill
  • 2008 Karina diagnosed with severe ME (but this is later disputed)
  • 2009 ME is re-classified by Danish Board of Health as Bodily Distress Syndrome, a somatoform/quasi-psychiatric construct. Two specialist clinics are designated in due course to research/treat BDS patients, one in Copenhagen and one at Hammel Neurocenter in Jutland.
  • 2010 Dispute about the ME diagnosis escalates. Increased pressure for Karina to be referred to the Research Clinic for Functional Disorders. The family refuse this.
  • 2012 First attempt at removing Karina from home fails. She becomes increasingly concerned and arranges for her parents to have power of attorney so they can act on her behalf.
  • January 2013 The Danish Board of Health (BOH) produces a report which discusses at length how to justify removing Karina from her home by force and restricting contact with her family. They conclude that they could achieve this under Articles 3* and 8** of the European Convention on Human Rights.
  • February 2013 Karina is forcibly removed from home under the emergency doctrine of “nødret” (necessity) by a team of police, doctors and social workers. This is clearly against her express wishes and those of her parents. She is incarcerated at Hammel Neurocenter.
  • April 2013 Karina’s sister (a nurse) visits her at Hammel. Karina is already too incapacitated to communicate with her sister.
  • May 2013 First court hearing: Karina is found to lack capacity so Kaj Stendorf (KS) is appointed as her temporary guardian, despite his apparent conflict of interest as former police chief of Karina’s district at the time of her removal from home.
  • May 2013 An international symposium is held in Aarhus to celebrate 15 years of The Research Clinic for Functional Disorders and Per Fink’s 60th birthday. Ole Thomsen (director of health for Karina’s region) publicly congratulates Dr Fink and the team on having “dared to take a risk…[and] saved a young woman’s life” – with the aid of the Minister for Health (then Astrid Krag). British psychiatrists Peter White, Michael Sharpe and John Weinman are scheduled to attend and address the event.
  • September 2013 Court hearing at which KS is confirmed as Karina’s permanent guardian, despite the family’s continuing opposition.
  • October 2014 Karina is moved to the “rehabilitation centre”. The psychiatrists continue to claim that she is a “voluntary” patient and can leave whenever she wants (but she is physically and mentally incapacitated and cannot do anything without the guardian’s consent).
  • October 2015 The District Court reaffirms KS as Karina’s guardian.
  • December 2015 Karina’s father visits her at the rehabilitation centre. She is in a wheelchair, unable to speak, communicate or recognise him. She mumbles and grimaces incomprehensibly
  • February 2016 Following another challenge by Karina’s parents, the High Court upholds the District Court’s ruling; KS continues as Karina’s guardian. Karina remains at Hammel, completely physically and mentally incapacitated. Not only has the treatment failed but she is considerably worse than when she was involuntarily admitted, three years earlier.

* Article 3 is the right not to be subjected to torture, inhuman or degrading treatment. Apparently, the BOH decided that Karina’s situation in being cared for at home by her family was equivalent to (for example) the treatment which might have been experienced by an inmate at the US military prison at Guantanamo Bay.

**Article 8 is the right to respect for private and family life; this is taken to include healthcare. The BOH concluded that Karina’s right to a private and family life was best enforced by removing her from her chosen place of safety in her home, being cared for by her parents. It is also important to note that, following lengthy investigation, no further action was taken against her parents for any supposed harm to Karina.

 Explanatory notes

  1. ME is a complex, multi-systemic neuro-immune disease. The first documented outbreak was in Los Angeles, California in the US in 1934. The first similar outbreak in the UK was in 1955 at the Royal Free Hospital in London. The pattern has been much the same in many other countries. ME may have previously been mis-identified as “neurasthenia”. Historically, ME has been difficult to diagnose with the inevitable result that patients have been largely abandoned and even abused for decades (there is still no effective treatment and no universally-accepted diagnostic approach/biomarkers).
  2. The cyclical involvement of the psychiatric profession has complicated things further by constantly shifting research and treatment towards the psychosocial treatment approach which is, at best, ineffective and at worst, harmful.  In many countries, (including Denmark, at Hammel where Karina was taken) recommended treatments consist of Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), occupational therapy and psychotropic medications (eg. antidepressants).
  3. ME (as defined in the 2011 International Consensus Criteria) has been burdened with a variety of different names and around 20 different case definitions. Since 1988, the term “chronic fatigue syndrome” (as “CFS” or “CFS/ME” or “ME/CFS”) has been widely exported from the US to many other countries. This has caused great distress to patients with classic ME and widespread confusion generally. Patients with CFS may benefit from the treatments mentioned above, as distinct from genuine ME patients who will mostly become worse with such treatment (particularly GET).

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How – but not why…..

The Timeline tells us how this chain of events came about but it cannot answer the vital question of why. As I explained in KH2, I asked an academic colleague to contact both the Ministers for Health and Justice and Hammel Neurocenter. Per Fink replied on behalf of Hammel that all patients are there on a voluntary basis and that the clinic is very popular (see KH2 for fuller details).

Despite repeated requests, the Minister for Health has refused to comment on the basis of patient confidentiality (although the request was worded as a general inquiry rather than for specific information about Karina). The Minister for Justice has sent standard acknowledgments but no substantive answer.

Professional reputations are key to personal and financial success in any sphere of life. The psychiatric profession is no exception to this; despite a wealth of evidence (mostly privately-funded) that ME is an organic disease, it has been singled out as an easy target by psychiatric healthcare professionals in many countries as a way of displaying professional skills and bolstering reputations.  For this to succeed, a ready supply of suitable patients is needed on which the psychosocial treatments can be shown to work.

In the UK, the controversial PACE Trial fulfilled that obligation admirably, thanks to unquestioning endorsement by many media organisations. In Denmark, the same process has presumably been in action with patients like Karina. However, despite several requests by Borgerretsbevægelsen (Civil Rights Movement group) for details of successful treatments, none has been forthcoming as yet.

Follow the money 

The unholy alliance of insurance companies, healthcare professionals and the pharmaceutical industry is frequently the subject of comment and debate in relation to many medical conditions. Given its nebulous nature and largely disempowered patient population, ME as a disease entity is particularly susceptible to manipulation by this dubious triad.

Keeping an illness defined as either “psychiatric” or “chronic” reduces or eliminates the need for payouts by insurers; pharmaceutical companies are only interested in investing in research and development which looks likely to generate a healthy (sic) income (such as the lucrative antidepressant market). The input of healthcare professionals is vital in maintaining the status quo for all parties; however, in this scenario, patients are no more than a cog in the investment machine.

The Danish clinics which carry out research on BDS (also known as MUS – medically unexplained symptoms – and FSS – functional somatic syndromes) receive funding from a number of different sources. These include:

  • Substantial regular donations from TrygFonden, a charitable foundation owned by the Scandinavian conglomerate TryghedsGruppen.  TryghedsGruppen also owns Tryg, second largest insurance company in the Nordic region.
  • Generous donations from the Lundbeck pharmaceutical company via the Lundbeck Foundation (see P 17 of link). Lundbeck’s home page proudly declares: “Progress in Mind is Lundbeck’s dedication to addressing the global burden of psychiatry and neurology”.

CSR (Corporate Social Responsibility) or COI (Conflict Of Interest)? Or both?

The role of the state

The “follow the money” approach also benefits state finances; maintaining an ill-defined disease status is instrumental in keeping the lid on increasingly stretched welfare budgets. The sick and disabled are merely collateral damage along the way. But does that justification really hold water in the case of the ME?

In 2015, the US Institute of Medicine produced a lengthy report called “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness“. The report states:

Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/ CFS…….ME/CFS can severely impair patients’ ability to conduct their normal lives (at p 31)………..The direct and indirect economic costs of ME/CFS to society [in the US] are estimated to be approximately over $18 to $24 billion annually (at p 33) [my emphasis].

These “direct and indirect economic costs” consist mainly of healthcare costs, welfare payments and lost productivity. In recent years, the US’s average annual spending on “ME/CFS” research has been less than $5million (£3.54m/€4.47m). It doesn’t take a genius to work out that these figures don’t stack up. In the UK, government spending on ME research has been far less than that.

The economic costs of this disease burden are enormous; it therefore seems the height of fiscal irresponsibility not to have invested far more into funding ME research – with the focus on biomedical, not psychosocial, investigation.

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Legal issues 

In legal terms, Karina’s case is highly complex and encompasses a number of different areas of law (of which human rights law is only one strand). The issues involved present matters of significant public importance, both in Denmark and internationally. It also presents some serious challenges, not least in that there appear to have been anomalies in both the legal and executive processes right from the start.

Because of the now exceptional nature of this case, legal representation of the highest calibre is needed, ideally on a pro bono or reduced rate basis. There is a fund for donations towards legal costs (see end of post for details) but further funding is still required. Karina’s family have now exhausted all their own resources.

The method by which Karina was placed and retained at Hammel appears to have been artificially constructed and has resulted in a total impasse. The direct and indirect costs to the state of maintaining Karina’s constant care will be considerable. The amount it has already cost private donors and/or Danish taxpayers will be excessive; for this, the Minister for Health should be held accountable. (Estimated costs are in excess of 10,000DKK/£1100/$1500/€1350 per day).

Clearly there is an urgent need for a senior Danish lawyer to carry out an in-depth review of the case on behalf of Karina’s family (Karina herself cannot instruct a lawyer except through her legal guardian). Borgerretsbevægelsen has for some time been conducting a search for an experienced lawyer who is willing to take the case. As I mentioned at the top of this post, it has now been confirmed that Cristina Poblador is taking the case which is excellent news.

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THE TRAGEDY

As I said in KH3: “is her condition the direct result of a state-orchestrated plan which went horribly wrong?” If so, can the state not take responsibility for this error of judgment and return Karina to her home with appropriate compensation to her and/or her family in the hope that she might then be able to begin recovery from this traumatic episode? (see the case of American teenager Justina Pelletier – a structurally simpler case, legally speaking, but one which involves similar issues).

There are two separate answers to that question: the first is that the state is unlikely to agree to such a course because it could be construed as accepting liability thereby opening the floodgates to further claims. However, although Karina’s case is by no means unique, her circumstances must now be classed as exceptional and critical; her case could therefore be viewed as distinguishable from any opportunistic claims which might arise later on.

The second answer is this: in the case of ME patients, collective responsibility by the psychiatric profession for its mistakes – and the resulting injury to patients – is not deemed necessary. A broad coalition of psychiatrists and related groups appears to enjoy worldwide state-sanctioned immunity from the consequences of their actions; most ME patients, on the other hand, continue to carry the burden of a stigmatised and untreatable illness for the rest of their lives.

Karina’s situation is an extreme example of how badly wrong the process can go. In the continuing absence of a global political will to change this, her story will continue to be repeated throughout future generations. That is the tragedy.

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Acknowledgements 

Unless something unexpected happens, this article will be the last in my series about Karina for the time being. I would like to thank the following people for their assistance with compiling the information on which this series is based:

 

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Disclosure

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

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DONATIONS

Save4Children is collecting donations for the legal fund. Click here and follow the instructions to make a donation.

 

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