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

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

Still looking for that RESET button…

NB: This is a revised version of my post from last month. It is mostly the same but I have rewritten the paragraph towards the end entitled “Lessons?” to clarify the issues raised.

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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 from 1989, when I was first diagnosed. 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 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.

Where to go now for 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 and you can read the 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. There are ongoing public updates in these Facebook groups – Karina-sagen (Danish/English) and ME Centraal (Dutch/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 perspective in the UK, the NICE guidance remains one of the biggest obstacles. 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, it was recently announced that there is now an ongoing review of whether or not a full review of the guidance should be brought forward to later this year (I take no responsibility for the tortured language of that sentence). A decision on this first stage should be published by the middle of 2017 (see above link to the guidance for more detail).

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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. 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.

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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; 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.

Karina Hansen 6: THE HOMECOMING

October 26, 2016

KarinaHansenStockPicKARINA HANSEN, “PRISONER OF DENMARK”, IS HOME AT LAST.

On Monday 17 October 2016, after three and a half years of incarceration, Karina (who has severe ME – see below) finally returned 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.

During recent months, Karina’s condition had improved slightly and her parents were able to visit her on a regular basis (more detail in my previous post). As a result, meetings took place between those in charge of the Clinic at Hammel where she had been an inmate since February 2013 (see Karina’s Story below for full background) and representatives of Karina’s family. An arrangement for Karina’s return home was agreed whereby her parents would take her home within the next few days and she would remain there for a trial period. If all went well, she would stay on at home permanently.

Significantly, Karina was well enough to sign a document saying that she wanted to go home with her parents. Although she was still unable to speak, she was able to communicate via gestures that she understood the plan and wished it to happen.

The trial period has now passed without incident and so Karina and her family have decided that they want to share the news with their friends and supporters all over the world.

Karina has finally come home.

A request for privacy

It is Karina’s birthday on 7 November, the first one she will have been able to enjoy at home with her family since 2012. Her supporters all over the world will be celebrating with her. There are various groups (on Facebook, for example) with more details of how to get involved.

The Hansen family is very grateful for the huge amount of support and many good wishes which they have received over the last few years. However, this is a time of enormous re-adjustment and they would like to request that, once Karina’s birthday is over, their privacy is respected. Karina has a long way to go with her recovery and her family members need time to adapt to their new situation and reflect on how to process the traumatic events of recent years.

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Regular readers of this blog will be familiar with Karina’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally. However, for new readers, and those needing a reminder, here is a summary:

Karina’s story 

Karina (pictured top left, from her schooldays) 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 have written a series of blog posts 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.

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Official comments on Karina’s case

Regular readers may recall from earlier articles in this series that I contacted (via an academic colleague who is an expert on Open Justice in European countries) the Danish Ministers for Health and Justice and Hammel Neurocenter. These requests for comment were made in February 2016.

  • The Minister for Health replied two months after the original request and 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 sent standard acknowledgments and eventually responded in July (nearly six months after the original request). The reply simply referred the inquiry back to the Minister for Health.
  • Per Fink replied within two days on behalf of himself and Hammel. In summary, he stated that all patients are there on a voluntary basis and that the clinic is very popular

The Clinic has been contacted again for comment about Karina’s return home. I will update this article when I receive a response.

Where are we now?

The status of Karina’s legal guardian will need to be resolved formally by the Court. Whether or not his role in these proceedings (see previous posts) is subjected to any further scrutiny is another matter. Only time will tell. And there are other issues such as ongoing medical treatment which will still need to be addressed so the story is not necessarily over yet.

However, the question which I asked in Karina Hansen 3: Update March 2016 remains unanswered: “In the absence of any clear explanation, the inevitable question arises: [was] her condition the direct result of a state-orchestrated plan which went horribly wrong?”  Perhaps this question will be addressed if there are any further legal proceedings in relation to these events.

How much damage has been done to Karina and her family remains to be seen. After three and a half years in an institutional environment, there will be considerable adjustments and adaptations to be made. It is to be hoped that plans have been put in place and that appropriate support will be made available to them.

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Significance of Karina’s story for the future

Karina’s story is horrifying. It is a story which should be of the utmost international concern, as a salutary reminder not only of a shocking breach of one young woman’s rights but also of the continuing scandal of the appalling treatment and stigmatization of ME patients all over the world.

It is also of supreme importance that a permanent record of these events is publicly available as reference material for the future. That is why I have invested so much time and effort into researching and writing this series of articles (always whilst battling through my own brain-fog, one of the hallmark symptoms of ME and, for me, the most difficult of all to live with).

But, for now, the international ME community can celebrate the fact that Karina is free at last.

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Acknowledgments

I would like to thank Bente Stenfalk of Borgerretsbevægelsen (Civil Rights Movement Group in Denmark) for keeping me up to date with the Group’s work in assisting Karina and her family.

I would also like to thank Rob Wijbenga from the Netherlands for his support and assistance.

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Disclosure

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

Karina Hansen 5: A little progress?

October 12, 2016

KarinaHansenStockPicRegular readers of this blog will be familiar with Karina’s horrifying story. This update follows on from my series of posts, the most recent of which, Karina Hansen 4: Timeline, Torture and Tragedy, contains more detailed information. For the full history of the case, see Karina Hansen 2: the Ghost in the Room. For new readers, and those needing a reminder of events leading up to this point, this is a summary:

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, in February 2016, Karina remained a de facto prisoner of the state. She had 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. At that time, she did not appear to recognise her own father.

A change in circumstances

In recent weeks (September/October 2016), Karina’s parents have started being allowed by the Clinic to visit her. In theory, there was never any reason why they couldn’t see her during her whole time there. However, shortly after as she was taken to the Clinic by a team of police, doctors and social workers in February 2013, she became unable to speak or communicate and her phone disappeared. As a result, the guardian was appointed by the court (see previous posts) who then took decisions on her behalf. Despite repeated efforts, her family members were then allowed very few visits.

This refusal of visits was on the basis that Karina was extremely distressed and therefore unable to communicate a meaningful response when asked if she wished to see them. However, since I last wrote about Karina’s situation in April 2016, she has begun to be able to communicate more clearly, albeit only in nodding or shaking her head in response to questions. Subsequently, when asked if she wanted to see her parents, she indicated that she did and so the more frequent visits have now begun to take place.

It is not clear what has caused this shift in Karina’s circumstances at the Clinic. In my post Karina Hansen 3, I suggested that she might have been over-medicated; perhaps adjustments have been made to her dosage during recent months and this has increased her capacity to communicate. Interestingly, her phone has also resurfaced. A helpful member of staff at the Clinic, who had given Karina’s parents access to her, assisted her with setting up the address book in her phone again.

Whatever the reason, it seems that there is now a little progress in Karina’s condition. She is still in a wheelchair but becoming able to walk short distances with the aid of a walker.

Still an uncertain future

It is important to emphasise that there is still no clear prognosis, nor any indication of a more permanent change in Karina’s situation. Public speculation will not influence the eventual outcome and her family have requested that respect for their privacy is maintained for the foreseeable future.

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Disclosure

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

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 itself. Alem Matthees (the original requestor of the data) has done an extraordinary job. Retraction Watch covered the development here.

However, it is important to remember that, in theory,  QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so we cannot yet be certain that this judgment will stand. 

[UPDATE September 2016: QMUL is NOT appealing the decision and the data will be released. Retraction Watch linked to Virology Blog article here].

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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 my series of posts on the PACE Trial  (or scroll down right-hand sidebar for “Categories”).

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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.

 

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