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Welcome to Law and Health

June 7, 2019

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 

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Note: this blog works across all devices but can be viewed most easily on a computer or tablet.

Thank you for visiting this site. Despite the date at the top of this page, it was actually set up in August 2012, not June 2019. However, it took me some time to work out the best way of guiding visitors around the topics covered here, which is why the two dates are so different.

This post is pinned so it remains at the top of the Home page, regardless of what else I post. It provides a summary of my research and advocacy work and indicates where to find information in this blog. Recent posts are listed in the sidebar.

Overview

I cover 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, much of my research has been focused on issues facing the international community of people who live with the disease myalgic encephalomyelitis (ME) – sometimes conflated incorrectly 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. 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 am 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.

Updates

I try to keep this site updated but the pace of change is rapid and, inevitably, I can’t always keep up. If you notice something like a broken link or an outdated fact, please contact me either via Facebook private message/Twitter direct message or at v.eliot-smith@qmul.ac.uk.

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MAIN TOPICS FEATURED IN THIS BLOG 

I have covered a number of different topics. You can see them in the list of “Categories” by scrolling down the right-hand sidebar. In particular, I have written about five 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).
    A full list of posts can be found in The Secret Files category.
  2. 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. Starting in 2014, 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. The trauma of her experience, and that of her family, is likely to continue for the foreseeable future.
    The full list of posts can viewed in the Karina Hansen category.
  3. The PACE Trial controversy
    This category contains the greatest number of posts, largely as a result of my collaboration with academic/journalist Dr David Tuller. My work on this topic is mostly concerned with the process (such as Freedom of Information requests for information about the trial) rather than the science of the PACE trial.
    Due process is a vital component of any functioning democracy. The currently shifting tectonic plates of a rapidly changing geopolitical climate serve to create widespread instability and insecurity. In such an uncertain world, due process becomes even more vital in civil society by requiring transparency and scrutiny of executive action and in maintaining the protection of individual rights.
    The full list of posts can be found in the PACE Trial category.
  4. “Changing the narrative”
    This series of posts considers the development of a more effective strategic communications and media platform for the ME community.
    The full list of posts can be viewed in the Strategic communications and the media category.
  5. The National Institute for Health and Care Excellence (NICE)
    NICE is the executive non-departmental public body of the Department of Health in England which publishes guidelines on health/social care-related issues. This category discusses how NICE features ME in its guidance (“CFS/ME” or “ME/CFS”, as it confusingly terms it). In particular, these posts provide critical analysis of the ME guideline revision process from 2017 to 2021. The previous guideline dated back to 2007.
    The full list of posts can be viewed in the National Institute for Health and Care Excellence category
  6. Covid-19 and long Covid
    This is a selection of posts which refer to aspects of Covid-19 and associated issues. The full list can be found in the CoronaVirus category.
  7. Open Justice
    This category contains academic posts on specific legal issues, not necessarily directly related to ME.The list can be viewed in the Open Justice category.

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This is a quote from my 2015 post The Secret Files Unwrapped: part 2 – control, not collaboration. Despite increased advocacy efforts, there has been too little significant progress in the acceptance, diagnosis or treatment of ME since then.

I would argue that ME patients are now in a unique category. I can think of no other disease in the modern age which, having initially been regarded as hysterical or psychosomatic in origin, has remained stigmatised and untreatable for so long. Anecdotally speaking, diseases such as MS, polio, epilepsy and HIV/AIDS were all dismissed by clinicians and politicians early on in their development; all have since progressed to a stage of diagnostic near-certainty and  officially-sanctioned treatments.

In the case of HIV/AIDS, this took about twenty years. By contrast, ME was first documented eighty years ago [ie. in 1934] but patients are still not routinely recognised as having a “real” illness and there is still no effective treatment. Funding is derisory or non-existent. This must qualify it for a unique status which justifies special pleading on behalf of its patients. This is not to detract from the interests of other serious illnesses; it is merely to restore ME to its rightful place in that group, as it was over sixty years ago [ie. 1956].

A short post on long Covid media exposure

February 19, 2021

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times”  ~  Valerie Eliot Smith 2019

Yesterday (18 February 2021) in the UK, there was a media blitz on the experiences of those suffering with the highly distressing symptoms of long Covid. This included children, healthcare workers and teachers, with contributions from various experts on the condition.

I watched, listened and read. The stories were tragic and heartbreaking. Those living with long Covid are not receiving proper acknowledgment or treatment. Those who believe they contracted the condition via their workplaces (healthcare and education) are already seeking financial compensation for their extensive losses.

Most people who live with the disease myalgic encephalomyelitis/ME (as I have since 1981) are likely to have been absorbing these accounts with mixed feelings. The stories were horrific and the lack of proper medical recognition and care were deeply troubling. But these stories are almost identical to those with which people with ME have been living for many decades. And yet – ME patients are rarely heard or seen.

[Note: ME is sometimes referred to – confusingly – as “chronic fatigue syndrome” or “ME/CFS”]

So how did the long Covid stories get told?

This is no accident. Members of the long Covid community have organised themselves and are managing a well-orchestrated media campaign. This requires motivation, funding and appropriate advice on media handling. The results are highly visible – although, of course, whether or not this campaign achieves its objectives (whatever they are) remains to be seen.

Long Covid is a painfully current topic which is dominating the news in most countries. This gives it an enormous advantage over the ME patient community which has been in existence as a documented group for nearly a hundred years. This means that its novelty and currency as a news issue is almost non-existent, unlike long Covid.

What about ME patients?

Efforts to tailgate on long Covid issues are misguided. Over the years, the ME community has become a marginalised player on the international stage. Compared with visibility of the long Covid community, ME patients are a mere background blip.

Most patients with long Covid will go on to recover, although it may be a long, hard road. Only a few will ultimately be diagnosed correctly with ME. Conflating the two conditions may be detrimental to both patient cohorts. However, appropriate early management of the conditions may involve similar strategies.

Why the difference between the two groups?

This state of affairs is a direct result of decades of reputational damage inflicted on the ME patient community by so-called international ME and/or CFS “experts” (including, historically, Dr Anthony Fauci, Director of the NIAID in the US). Those “experts” retain great power and influence worldwide. Their reputations could suffer if ME patients were able to change the narrative and highlight their real status as a neglected and stigmatised group which has so far been denied respect, recognition and long-overdue “moonshot” style support.

The status quo is completely asymmetric; the balance of power remains hopelessly skewed in favour of the “experts” who retain power and against the interests of the international ME patient community.

About myalgic encephalomyelitis/ME

Many people who live with ME first become ill following an infection, similar to some living with long Covid. Although the initial infection may appear to have receded, patients do not then recover from the often devastating symptoms which persist, and may be lifelong. The range of symptoms is wide and the disease can be fatal. Prevalence estimates vary; the UK rate is generally put at around 250,000 patients, about twice as many as those with multiple sclerosis/MS.

The recovery rate from ME is estimated to be around 5%. As a result, the ME patient community is very familiar with the long-lasting effects of an initial infection which healthcare professionals frequently do not understand and often do not take seriously.

Can the ME community change the way it is viewed? 

Yes. I have advocated over and over again on this blog and elsewhere for a properly planned and executed media strategy. This is the only way to change a deeply entrenched cultural perception of the ME patient community as a nuisance group, undeserving of meaningful research and real treatment options. It is a huge challenge and one which is simply not being addressed. The small amount of media coverage which is achieved by various charities and individual patients is a drop in the ocean of what is actually needed.

However hard it is to see the extensive coverage of issues relating to long Covid and the shoddy treatment which many patients are receiving, the real frustration for me comes from knowing that, unlike the long Covid community, the ME community is failing to use even the most obvious routes to changing its own situation.

In 2019, I wrote a series of posts addressing the media challenges faced by the ME community. A specific pathway was laid out in the third part of that series (second half).

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Five years ago, in February 2015, I wrote this:

Whatever happens next is certainly too late for the millions of 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.

Professor Garner, The BMJ and me: an alarming flip-flop on recovery from long Covid

February 1, 2021

As the year 2020 began, so did the story of the global pandemic which is now known generally as Covid-19. One year on, the world is still coming to terms with both the short and long term effects of the disease. The latest recorded worldwide death rates have exceeded two million and the disease is still claiming more victims. Populations everywhere are having to adjust their patterns of behaviour and learn to accommodate a new world order in global public health.

Long Covid

Many individuals are still reeling from the after-effects of the disease. Some patients who were not sick enough to be hospitalised still remain severely affected by a condition which has come to be known generally as long Covid. Long Covid describes a state whereby the initial virus appears to have gone but serious, life-limiting symptoms continue and resumption of normal activity remains frustratingly out of reach.

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Professor Paul Garner

Paul Garner is Professor of Infectious Diseases at the Liverpool School of Tropical Medicine. In March 2020, he contracted Covid-19. In May 2020, he began writing and broadcasting about his ongoing personal experience of living with long Covid. Like many others, he was clearly suffering considerable pain and distress from the symptoms that were continuing to prevent him from going back to his normal life as a busy academic and researcher. He also talked about the lack of knowledge and understanding from the medical profession which was causing him further distress.

Professor Garner was very frank about what he was going through. His intention appeared to be to open up a long overdue public conversation about the long-term effects of viruses in general and Covid-19 in particular. Representatives from a variety of patient groups and healthcare professionals responded, including members of the ME (myalgic encephalomyelitis) patient community.

From this point onwards, Professor Garner embarked on a journey which ended in a very different place from where it had begun.

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About myalgic encephalomyelitis/ME

Many people who live with ME first become ill following an infection. Although the initial infection may appear to have receded, patients do not then recover from the often devastating symptoms which persist, and may be lifelong. The range of symptoms is wide and the disease can be fatal. Prevalence estimates vary; the UK rate is generally put at around 250,000 patients, about twice as many as those with multiple sclerosis/MS.

The recovery rate from ME is estimated to be around 5%. As a result, the ME patient community is very familiar with the long-lasting effects of an initial infection which healthcare professionals frequently do not understand and often do not take seriously.

[Disclosure: I have lived with ME in varying degrees of severity since 1981. For more information about my background go to About.] 

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The BMJ‘s Opinion series

Having initiated this public dialogue, Professor Garner went on to write a series of six personal blog posts for The BMJ’s Opinion section about living with, and managing, long Covid. He described his personal journey through a very difficult time with great sincerity. He expressed appreciation for the various groups and individuals who had reached out to him, including representatives from the ME community.

On 19 May he wrote of the damage caused by over-exertion in an effort to recover:

I felt aggrieved as I had not done much at all. “You don’t understand pacing”, the ME Association adviser Charles Shepherd told me. He explained that this “post-exertional symptom exacerbation” is a good signal for people with the chronic fatigue syndrome/ME [sic]. The difference is with covid-19, the fatigue is happening at the same time as other dangerous complications.

And on 23 June:

What is worse is that there is increasing evidence that some doctors are dismissing this illness…….Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19. [my emphasis]. Yet for us “long haulers” the symptoms are the same, the management schedules are the same, even if we don’t quite fit the somewhat arbitrary definition of “chronic” at 4 months. 

A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis [sic] is 13 years old. There is little evidence in the UK of a co-ordinated response, that is truly multidisciplinary, involves organizations such as the ME Association, and includes patients…….This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. [my emphasis]. We have messed up before, lets’ not do it again with long term covid-19 illness. 

And on 4 September:

Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “Exercise therapy for chronic fatigue syndrome:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated). 

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area…….Charles Shepherd at the ME Association helped with explanations of the delayed payback with post-exertional malaise. This helped work out why I felt worse on some days, but not always—there is still a random element. Jennie Jacques, Open Medicine Foundation [which supports research into ME] Ambassador, gave me good advice, and has written an excellent narrative online about how to pace.…….

I thought this was going to be a short illness. I wrote my first opinion piece after six weeks of unrelenting illness, and am now writing at six months, with an illness that resembles ME/CSF [sic].

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My communications with Professor Garner

As a result of this last post on 4 September, I contacted Professor Garner directly. This is an extract from my first email:

…I have followed your discussions of your own condition and of Covid, plus its after-effects. I am so very sorry that you have been so ill for so long and that you received such inappropriate advice about management and recovery from the illness. All patients deserve so much better. 
I believe that some on Twitter have suggested that you contact me because I am a barrister. While I am indeed a barrister, the focus of my work is on the politics and history surrounding ME and related conditions. I also concentrate on ways in which we should be trying to change the toxic narrative which has defined the illness for decades. I follow the science although I do not claim any specific knowledge or expertise in that domain. My blog (see link below) reflects some of the work I do. 
If you think that I could assist you with your work on Covid/PCS/PVS/ME, please feel free to contact me. Whilst I am limited in what I can do because of my own health (ME in varying degrees of severity since 1981), I always try to respond to requests for assistance. 

He responded and over the next few weeks we had four discussions by email. Two of these were one-to-one and the other two were as part of a group with two other members of the international ME community. The exchanges were lively and good-natured and, for the most part, positive and constructive.

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The BMJ’s latest Opinion piece

I learned from an email autoresponse in early January 2021 that Professor Garner had contracted dengue fever.  On 25 January, another post appeared in the BMJ series entitled “Paul Garner: on his recovery from long covid“.

The tone of this new post was markedly different from the previous ones. Professor Garner’s journey to recovery over the preceding nine months had been substantially rewritten and was at odds with his observations in earlier posts. The post also launched a surprising attack on the ME community.

…Leaflets from ME/CFS advocacy groups had advice about not overdoing it. I learnt that the exhaustion I experienced after trying to exercise at week seven is termed “post exertional malaise” and is a key symptom of ME/CFS. I read that if I pushed myself, the raised heart rate would make me ill. I decided that dominating the virus did not work.

While pacing made sense initially, I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life. I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria. I wasn’t depressed, but mentally low, and relapses were more common…….Seven months after the initial covid-19 I was referred to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest. [my emphasis]

I knew the symptoms were real, but somehow these pure biomedical explanations felt wrong. While waiting for the appointment, I cast around my international network of medical evidence specialists for help. I was put in touch with a PhD candidate in psychology from Norway who had completely recovered from post viral fatigue syndrome (CFS/ME) years ago and offered to share the recovery story. The story was very similar: no previous illness, no psychological problems, only long-lasting debilitating symptoms after an infection. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away. 

This opened the door that led to my recovery. I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious…….

I know ME/CFS is associated with a variety of viruses and possibly other factors too, and recognise that the postviral syndromes have a wide spectrum of clinical manifestations. My experience may not be the same as others. I feel that I have looked down the barrel of the ME/CFS gun and disarmed it…….

I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME [sic], not people that are still unwell [my emphasis]…

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The takeaways from that most recent post

  1. Professor Garner had long Covid from which he appears to have recovered
  2. His personal recovery journey has been long and painful. This reflects the anecdotal experience of others
  3. He now believes that the ME community, rather than assisting him, actually hindered his progress by providing him with information about ME as a biomedical illness thereby steering him away from the therapies which apparently have led to his recovery
  4. The contact from the ME community was unsolicited and unwelcome, despite his media appearances initiating a public discussion about the difficulties of recovery
  5. By extension, anyone with a similar condition – including ME – has the capacity to recover if only they are willing to follow the same (unspecified) process as he did, a process which cures by using the power of positive thinking to overrule negativity embedded in patients’ nervous systems

Points 1 and 2 are unremarkable. Points 3 and 4 are gratuitously offensive. Point 5 is irresponsible in that it promotes the theory that mind can cure body if only the patient is willing to embrace the process.

The view from England’s National Institute for Health and Care Excellence (NICE)

The use of an “exercise + willpower” approach is well established as potentially insidious when used as a recommendation for recovery from long-term post-viral syndromes in general, and for ME in particular. When this approach is adopted by a scientist of Professor Garner’s standing, it becomes downright dangerous.

The outdated NICE guideline for “chronic fatigue/myalgic encephalomyelitis (or encephalopathy)” [sic] or “CFS/MEis in the final stages of being updated. The last version was issued in 2007. The draft version of the new guideline was released in November 2020. The final version is due in April 2021.

The new draft guideline indicates that Graded Exercise Therapy is being removed as a treatment recommendation and that Cognitive Behavioural Therapy is being downgraded from a treatment aimed at brain retraining to a purely supportive therapy.

The draft guideline also specifically removes pseudoscientific treatments such as the Lightning Process (LP) as treatments for “ME/CFS” (as it is now termed). The process which Professor Garner used to achieve his recovery from long Covid sounds very similar to the LP. It seems that even NICE is not inclined to agree with Professor Garner on this point.

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The role of The BMJ 

The BMJ is one of the world’s oldest and most respected general medical journals. In publishing Professor Garner’s most recent Opinion piece, it assumed certain responsibilities.

Legally speaking, the piece was acceptable. Morally and ethically, it is more dubious, given its unwarranted attack on the ME community. However, the greatest criticism must be reserved for its editorial function. Some of the content of the piece was significantly at odds with his comments earlier in the series. This is editorially sloppy and does not reflect well on The BMJ‘s standards of oversight.

Unsurprisingly, there were many comments from readers below the post. The moderators exercised their legal and editorial judgment in carrying out their duty to ensure appropriate standards were met. Why, then, was the same level of editorial judgment not applied to the original post? Had that been done, most of the comments would have been unnecessary and an international patient community would not have felt so stunned and betrayed by what they had read.

Conclusion

Professor Garner’s post of 25 January 2021 demonstrates an extraordinary lack of empathy for a patient community with which he had previously identified so strongly. As to what caused such a profound and damaging volte-face, one can only speculate.

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Due diligence

The day after I read Professor Garner’s piece of 25 January, I sent him the following email. I have twice followed it up, asking for a reply. On the second occasion, I indicated that I would be writing a blog post about what he had said. I then received a brief response which failed to address adequately the points that I had raised.

Dear Paul
I was interested to read your 25 January BMJ Opinion piece about your recovery from Long Covid. I’m very glad to learn that you are feeling better. However, I was extremely disappointed to see your surprising attack on the “ME/CFS” community.
Responses to the specific points raised by your article are being posted in the comments section and on Twitter so I won’t repeat them here. However, there is one particular issue which I need to address with you directly.
You began discussing your situation as a Covid “long-hauler” in both broadcast and print media in May last year. This activity suggested that you were keen to engage in a public debate about long Covid and, as a related issue, post viral/chronic fatigue syndromes and ME. Having publicly invited that discussion, it seems highly disingenuous to describe the responses you received from the ME community as “unsolicited”.
As a result of your media appearances, I contacted you and you replied. Our subsequent email exchanges were undertaken in mutual good faith (certainly from my side) and seemed both positive and constructive. At no stage did you appear to be unwilling to participate in discussions, either in one-to-one conversations or as part of a group.
Unfortunately, your article suggests that my assumption about mutual good faith was mistaken. I would appreciate clarification from you on that point.
Finally, I would remind you of our group conversation of 18 September 2020 with [X and Y] when I said this:
“My guess is that many people who are experiencing long Covid will eventually recover, given the right management, although it could be a long, hard road. Eventually, there may be a small but significant number of long Covid patients who meet the criteria for ME (as with SARS-cov-1 and other viruses), including those diagnosed with CFS or similar. As you say, Paul, “[t]his is a spectrum of disorders”. Nevertheless, I’m unconvinced that it is a “one size fits all” situation.”
Your recovery seems to accord with my prediction but I’m unclear as to how comments such as this have provoked your gratuitous assault on the ME community.
I look forward to hearing from you.
With best wishes for a continued recovery.
Valerie

NICE, the media and the cultural problem of myalgic encephalomyelitis (ME)

December 14, 2020

RE-CAP: the ongoing NICE guideline in development (GID) process

Read more…

“Ice Cream & Hypothermia” revisited + a chilling NICE consultation process

November 19, 2020

FROZEN (Kazakhstan 2019)

NOTE: this post runs at 2270 words. It falls naturally into two sections of approximately the same length. 

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The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is necessarily limited by health issues.

In recent months, I have had an increase in pre-existing non-ME health problems as described in this post from 2012. The full text (1200 words) of that post appears at the end of this one. The current problem is being addressed.

Meanwhile, a few words about the National Institute for Health and Care Excellence (NICE). Much has already been written elsewhere on this. Below is my own short take on the subject:

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CONSULTATION STAGE OF NICE’S “GUIDELINE IN DEVELOPMENT” PROCESS ON “MYALGIC ENCEPHALOMYELITIS (OR ENCEPHALOPATHY)/CHRONIC FATIGUE SYNDROME”[sic] 

Let’s just get the tedious terminology out of the way:

  • “The National Institute for Health and Care Excellence (NICE) is an executive non-departmental public body of the Department of Health in England…which publishes guidelines [on matters of health and social care]…” (Wikipedia)
  • “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” is subject to around twenty different case definitions. For the purposes of this blog, it is ME, the complex neuroimmune disease which I have lived with since 1981. A good source of information about ME is available here.

In 2017, NICE began the process of updating the existing guideline on ME, originally published in 2007. The existing guideline is dangerously inaccurate and outdated. It remains in place until the new one is published.

After several postponements, the draft consultation documents were finally published on 10 November 2020. This is followed by a six-week consultation period, concluding on 22 December 2020. The final publication date is expected to be 21 April 2021.

With my health in its current state, I haven’t yet been able to read all of the documents. The observations below relate to the draft guideline document unless specified otherwise.

It is important to remember that the new guideline is a draft for consultation purposes and not the final version.

A brief scan of the relevant available information reveals the following points of significance (this is just a snapshot: there are many others):

  • NICE has confirmed that there is currently no treatment or cure for ME. A shocking admission for an illness which has been documented for nearly a century. That the focus of this guideline remains on management rather than treatment for a longstanding illness of this severity is completely unacceptable.
  • Graded Exercise Therapy (GET) should no longer be recommended as a treatment for ME patients. The scandal here is that it was ever offered in the first place when it clearly caused severe deterioration and, in some cases irreversible damage, to ME patients.
  • There is still an emphasis on increasing activity as a form of illness management. This leaves open the possibility of further damage from ill-informed therapists at the so-called specialist CFS/ME centres.
  • Cognitive Behavioural Therapy (CBT) remains as a treatment option but downgraded to a supportive therapy of choice by the patient, rather than an attempt to brainwash very sick patients into believing that they’re not really ill, they only “think” they are. This still leaves open the possibility of continuing inappropriate interventions by misguided CBT practitioners.
  • Pseudoscientific therapies such the Lightning Process (LP) are removed as treatment options. Again, the scandal is that the LP was ever considered appropriate at all. Some ME patients have described how they were encouraged or even coerced into paying hundreds of pounds to take part in a process which many then found to be exploitative and abusive.

My assessment so far

A couple of useful steps forward alongside a lot of worthy but anodyne waffle about proper support and social care for ME patients.  Great in theory but how much will actually translate into better practices, improved conditions and – above all – serious biomedical research on a scale which properly reflects severity and disease burden?

The section on research recommendations is – to put it bluntly – pathetic. However, there are some pretty damning observations in the evidence review document.

The challenges and stigma attached to the illness are acknowledged in the NICE draft. However, my view remains that, until the decades of reputational damage experienced by the ME community are addressed by the institutions which have enabled abusive behaviour towards patients, then little will actually change on a day-to-day basis. I have written about this in my series of posts from 2019 “Changing the Narrative” and my position has not changed since then.

Hopefully I will be proved wrong after the final version of the guideline is published in 2021.

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A note on “Post-COVID-19 syndrome”, also known as “Long Covid”

There has been much discussion in recent months about Post-COVID-19 syndrome or Long Covid as some prefer to call it. This final scope document from NICE, issued in October 2020, sets out the current position in England, Wales and Scotland.

ME is frequently characterised as a post-infectious illness or disease. Some Covid “long-haulers” have already been diagnosed with ME. More may follow. The extract below is taken from my comments in a group email discussion from September 2020:

“My guess is that many people who are experiencing Long Covid will eventually recover, given the right management, although it could be a long, hard road. Eventually, there may be a small but significant number of Long Covid patients who meet the criteria for ME (as with SARS-COV-1 and other viruses), including those diagnosed with CFS or similar…..This is a “spectrum of disorders”. Nevertheless, I’m unconvinced that it is a “one size fits all” situation.
For my part, I have enormous sympathy and concern for the Long Covid community and I am happy to do whatever I can to advise and assist. However, my primary focus will always be on the continuing challenges faced by the international ME community. In April this year [2020], just after worldwide lockdowns were imposed, I wrote this in an email exchange with a director of one of the ME charities: 

It’s possible that more attention will be drawn to the long-term effects of post-viral conditions but it will take some time for that to become apparent, once the current crisis has abated. It’s also possible that ME-specific issues will [yet again] get sidelined in the scramble for resources in an increased awareness of general post-viral issues.” 

And finally, lest we forget: “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 

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Ice cream and hypothermia: a very personal story

NOVEMBER 1, 2012

When I was a child, living in Australia, I needed to have my tonsils removed. I was nine years old; I had been ill for quite some time and was very frightened at the idea of surgery. Everyone said to me that it would be fine and I would get lots of ice cream afterwards to cheer me up and make my throat feel better.

I had the operation. I was in hospital for four days and caught a cold because the nursing staff insisted on leaving a window open next to my bed. I felt terrible and my recovery was slow. And I never got any ice cream.

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We have just had our first bout of cold weather here in London. I have come to dread this time of year as I now have a tendency to become clinically hypothermic in a very short space of time.

I have been through a total of eight operations in my life so far. Five of these took place between 2004 and 2008. The second of those was in February 2005. I was admitted to hospital in London for the umpteenth time with acute, unexplained symptoms, on the day after the funeral of my closest friend. After a week of being unable to take in any food or liquid, I was very weak and in great pain. In desperation, my consultant (whom I knew well by this time) decided to open me up for the second time – and this wasn’t the last time he had to do this. He emphasised that I might not survive the surgery.

The operation turned out to be simpler than anticipated but I experienced severe surgical trauma because of my weakened state. My body temperature plummeted to around 31 degrees celsius (normal body temperature is around 36.8 degrees). My heart was doing some strange things too. I began to regain consciousness at this point and I remember shivering violently and uncontrollably for more than an hour while the nursing staff gradually brought my body temperature back to normal and my heart settled. My recovery from this operation was slow and tortuous. On the day of my operation, the partner of my dead friend checked into a hotel and killed himself. I had been powerless to comfort him in his grief.

A few weeks later, I tried a short walk outside for the first time. The weather was cold and I began to feel unwell quite quickly. When I got home, I checked my temperature as I thought I might be coming down with a post-operative infection. To my surprise, it wasn’t high: it was low – hypothermically so (ie. below 35 degrees) – although I had been outside for only a short time.

And so it has remained ever since. My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate.

I have discussed this problem with various doctors. No one can explain why it happens and actually no one is very interested, as I’m clearly still alive and apparently functioning “normally”. The fact that I have to manage this problem throughout the winter months by only staying outside for very limited periods of time – well, that’s just too bad. But each time it happens, a little more of my precious energy is sapped and my already restricted life with Myalgic Encephalomyelitis (ME) feels even more depleted.

If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.

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In October 2008, I was back in hospital for my eighth operation. This was a second attempt at correcting a cardiac arrhythmia, an earlier try having been unsuccessful. After the previous failure, I was paralysed with fear as the first experience had been truly awful and my recovery – such as it was – painfully slow. Yet again, I checked my will and the memorial service which I had prepared three years earlier. And again, my husband and I exchanged our words of farewell.

This time, however, I discussed my situation with the surgeon (whom I shall call “Tom”) and the anaesthetist. It was the same team as in the previous attempt so I already knew them. I explained to Tom about the hypothermia problem and queried the fact that operating theatres were always, in my experience, so cold. Tom confirmed that there was no clinical need for the temperature in the theatre to be kept so low and promised that he would ensure that a higher temperature was maintained throughout the procedure. I also requested that he would stay on afterwards, until I had come round in the recovery room (which is a lonely and terrifying place), so that he could tell me personally how it had gone. He agreed.

Somehow, I persuaded my legs to carry me into the theatre. About three and a half hours later I began to come round in recovery; Tom was there, waiting, as promised. I then did what I always do after an operation and promptly burst into tears, my standard response to surgical shock. I knew that Tom was emotionally reserved and not inclined towards displays of sentiment but I urgently needed reassurance. I held out my hand (because of the anaesthetic, I was still unable to speak at this point). He took it immediately and held it for a few minutes and told me that all had gone well. The comfort which I derived from this simple act of humanity was indescribable.

This operation was successful and I recovered rapidly. I later learned that, despite the fact that the theatre staff were roasting, Tom insisted that a warm temperature be maintained to reduce the risk of my becoming hypothermic again. He had kept his promise.

Since this last operation, I have been left with significant cardiac discomfort but the dangerous condition has been alleviated. I had hoped that perhaps my ME symptoms might also improve as a result but they have actually been exacerbated by the trauma. It had been impossible to evaluate those symptoms objectively in the preceding years because of all the other acute, ongoing problems. I had allowed myself to entertain the possibility that the ME (which I have lived with since 1981) might have improved; however, it was not to be. I now also live with the permanent legacy from so much surgery – including the hypothermia.

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After that final operation in 2008, I was out of the recovery room and back in my own room within a couple of hours. Sarah, the Australian nurse who was taking care of me, asked me if I was hungry.

And so, after forty-two years, I finally got my ice cream.

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“A Demon on My Life”: review of an online play about living with ME (myalgic encephalomyelitis)

July 21, 2020

Note: the disease myalgic encephalomyelitis (ME) is often referred to – inaccurately and confusingly – as chronic fatigue syndrome (CFS) or ME/CFS or CFS/ME. It is likely that there are many crossed misdiagnoses of both illnesses.

ME has been well documented since an outbreak in Los Angeles, California, in 1934 but, shockingly, is still often perceived as a “controversial” illness which was only “discovered” in the 1980’s. For more information follow this link

I have lived with ME in varying degrees of severity for nearly forty years. For more information see About.

A Demon on My Life_The Nightmare by John Henry Fusili

“The Nightmare” by John Henry Fuseli – 1781. Inspiration for the concept of “A Demon on My Life”

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JB Bruno is a long  established film director and writer. In 2019, he decided to return to theatre work. A friend of his had lived with ME for many years. Mr Bruno began to research this disease and its background and realised that this was a story that needed telling.  As a result, he wrote and directed the stage play “A Demon on my Life“.

 

The play was adapted for online viewing and livestreamed via Zoom, free of charge, on 20 and 22 June 2020. The second performance was recorded and is available on YouTube here.  The full cast list, credits and other details are in the information beneath the video.

The storyline

Liz (played by Leigh Fitzjames) is a professional dancer in her thirties. She lives in New York with her husband, dancer/choreographer Mark (Darren Lee). Liz has lived with ME for some years already and now learns that the illness has reached a stage where it is unlikely that it will ever improve.

Liz and Mark are trying to make sense of the life-changing effects of the illness whilst also learning to navigate the challenges of the caregiver/caretaker relationship.  Their partnership, which began as one of equality, now feels very out of balance, especially to Liz. They have learnt that they must deal with an illness which doctors frequently misdiagnose and the world mostly misunderstands – including even close friends and family members.

Liz and her friend, Katie (Emmy James), communicate regularly via Skype. Katie also has ME and is even more severely affected than Liz. Katie’s story becomes an integral part of the plot and reflects some of the more extreme aspects of living with ME and it is she who identifies the “Demon on My Life” as a metaphor for the illness.

The play is interspersed with powerful dream sequences, filmed in black and white. They are haunting and reflect the sense of unreality which is often experienced by those who live with serious chronic illness.

Review

The presentation of this play presented an unusually complex logistical challenge. The actors were playing their roles from seven different cities in three different countries and from multiple time zones. However, as I wrote in an email to Leigh Fitzjames after I had watched it for the first time:

Obviously, there were some digital glitches but it was an amazing technical achievement to bring a stage play to screen from so many different locations and still retain both its message and its heart.  

In his introduction to the video, JB Bruno highlights the range of practical and social issues raised by COVID-19. He also considers how some of them reflect the isolation and other psychological challenges with which ME patients are all too familiar and from which, unlike the healthy population, they are unlikely to be released as and when the pandemic begins to subside.

The play explores themes which will be familiar to most ME patients – the stigma and disbelief surrounding the illness, the desperate search for treatment no matter how expensive or outrageous, the Herculean effort required to attend a social occasion and the payback afterwards, the crass comments of old friends and new acquaintances, the devastating consequences of the “push/crash” syndrome – and, inevitably, grief and loss. As the play moves into the third and final act, it embraces a darker theme, one which touches on our deepest fears and reveals the painful realities of living with this disease.

The more philosophical themes are addressed by way of dialogues between Liz and Mark and their mentor, Bonnie (Blanche Baker). It’s a somewhat contrived device but achieves the desired result of airing the less tangible aspects of life with ME, such as the ambiguous roles of hope and acceptance in living the best life possible. It’s a little confused and clumsy but it’s an honest attempt to initiate a vital discussion of painful issues and unanswerable questions.

The ending is, inevitably, unsatisfactory – which is as it should be. JB Bruno has resisted any temptation to provide resolution or closure, understanding that, in this context, such an imposition of order from chaos would be wholly unrealistic.

The final words of the play are spoken by Liz. Throughout the performance, Leigh Fitzjames’ portrayal of Liz is perfectly-pitched, beautiful and heartbreaking. The entire cast was superb throughout this extraordinary performance but it is fitting that the last word should emanate from Liz as the central protagonist in this nightmare existence.

Liz’s final utterance, “I can’t disappear“, is threefold. It is a simple statement of fact. It is also a cry of desperation from the depths of a shattered soul. However, above all, it is a rallying cry, an exhortation for the ME community to reject the cloak of invisibility invested by the illness and to continue to work towards changing its trajectory whilst living the best lives that we can.

Will this play change the course of that trajectory? Probably not – and it would be unrealistic to expect as much. Can it be used to explore the central issues affecting the lives of the millions who live with this illness 24/7 and stimulate debate and understanding both inside and outside the community? Yes, if used with discretion, it probably can.

Will you agree with everything in the play? Probably not: I certainly didn’t – but, for these purposes, that is irrelevant. First watch it, if you haven’t already, and decide how best you can make use of this unique contribution to the lives of the “Millions Missing“.

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Structure of the play: pace it to watch it

The play is about 1 hour 45 minutes long. It is divided into three acts of just over 30 minutes each in length. This makes it reasonably easy to watch in manageable chunks which is helpful for ME patients who may have difficulty with concentration and memory. I watched it twice, each time over several days. Splitting it up like this worked fairly well although it is still a huge challenge for the more severely-affected.

The technical challenge of this online performance was considerable. Inevitably, internet connections keep dropping, sound disappears, voices get out of sync and those unfamiliar with Zoom may find the shifting appearance of images on the screen slightly disconcerting. I can only say persist with it. Yes, some of the dialogue gets lost but the overarching narrative and emotions are still sufficiently powerful to justify the effort involved.

The second performance was followed by a one-hour discussion with the cast and led by JB Bruno. It also features a Q&A with Dr Courtney Craig, herself a long-term ME patient, and others who were involved in the production of the play. I was flagging by this stage and the sound quality was poor but it’s worth pursuing if you can.

Watch the online performance and subsequent discussion from this YouTube link.

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FUNDING AND FUTURE PLANS: from the original press release

 

The production aims to do a theatrical run in New York City when theaters are open again. At that time, the company also want to have the funds to livestream select performances to a ME/CFS audience that would not be able to make a trip to a theater.

10% of all proceeds will go to an Solve ME/CFS Initiative, an advocacy group for research, treatment and awareness.They and other advocacy groups will be sharing the link so that people with ME/CFS can join at no charge.

All performers will be paid a stipend out of monies raised as well.

 

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COVID-19, NICE and ME: towards litigation?

May 5, 2020

On 18 March 2020, I tweeted this:

#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov  & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.” 

Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has a post-infectious onset, inevitably there is already a considerable amount of discussion about whether or not the current pandemic is likely to trigger a rise in the number of cases of “ME” in due course. Unfortunately, this discussion is not always as well-informed as one might hope.

At this critical time, the world is rightly focused on dealing with the immediate impact of the COVID-19 pandemic. Nevertheless, the need to continue advocacy work on behalf of the international ME community remains essential. ME is seriously misunderstood as an illness and the patient community remains devastated by decades of stigma and neglect.

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National Institute for Health and Care Excellence (NICE) review of “CFS/ME” guidance

If there is an increase in the number of people in the UK diagnosed with ME (or, more likely, the misleading and inaccurate term “chronic fatigue syndrome” or “CFS/ME”), then there is a serious risk that they will be directed to undertake Graded Exercise Therapy (GET).

In the UK, most medical professionals follow the treatment options recommended in the NICE Guidelines. In the Guidance for “CFS/ME”, GET remains a recommended treatment. The current guidance has been in place since 2007. Since 2017, it has been undergoing an urgently-needed update which was due for publication in December 2020. However, on 27 March, an email was sent to the stakeholders who are participating in the update process. The email stated the following:

During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.
The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.
For this reason, we have cancelled all guideline committee meetings and we will not be publishing any draft or final guidelines until further notice (except for COVID-19 rapid guidelines – see below).
At present we are not able to confirm the revised timelines for each guideline. We will be in touch to provide further information as soon as possible.
So the long-awaited update of the “CFS/ME” guidance has been delayed yet again, having been already postponed from the original publication date of October 2020 (see final page of document).

 

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UPDATE (1) 24 May 2020: 

On 22 May, NICE sent another email to stakeholders including the following statements:

As the NHS and wider health and care system starts to make arrangements for the next phase of its response to the pandemic, we will plan a phased restart of publishing draft and final (non-COVID) guidelines from 1 June…….At present we are not able to confirm the revised timelines for each guideline.

So, at this crucial stage, the final publication date for the updated guidance for “CFS/ME” remains open-ended.

UPDATE (2) 24 June 2020

On 24 June, yet another email was sent to stakeholders saying this:  

[T]he consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021.

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Does this delay matter?

Yes, it does. The current guidance is outdated, ill-conceived and founded on misinformation. The patient community has been lobbying for many years for the guidance to be reviewed and updated. A further delay in publication means an increased potential for newly-diagnosed patients to be subjected to GET, a treatment which is likely to be actively harmful. On top of that, the guidance is sometimes used as a weapon by the Department for Work and Pensions to deny benefit applications (refusal of treatment -> refusal of benefits)*.

In 2019, a patient survey was presented to the Chairman [sic] of the NICE Guideline Development Group. It was compiled in great haste, thanks to NICE’s tardiness in calling for the evidence. The Executive Summary states the following:

“The results show clearly that cognitive behavioural therapy [CBT] and graded exercise therapy are unsuitable treatments or management approaches for ME/CFS [sic]. The changes in severity and the worsening of symptoms are clear indications that the therapies being offered are having adverse effects on the health of individuals.”

Members of the ME patient community have been warning of the dangers of the NICE-recommended treatments for ME for many years. As of April 2019, when the patient survey was submitted, it is no longer tenable for NICE to claim that it was unaware of the potential harms which could be caused to ME patients who undertook GET as a result of expert medical advice.

Medical negligence claims

Given the wealth of anecdotal evidence of the potential harm caused by GET, the apparent absence of medical negligence claims against the providers of GET as a treatment for “CFS/ME” is puzzling. It’s possible that such claims have been launched and then settled out of court in which case it would not be a matter of public record. However, I think this explanation is unlikely.

The probable reason for this lack of litigation is a purely practical one. Patients who experience severe adverse effects from GET will deteriorate to the extent that they are far too ill to feel able to contemplate the protracted, gruelling and expensive challenge of starting legal proceedings. Most patients who develop severe ME after GET will be left by medical professionals to fend for themselves as there is no other officially-recommended treatment (other than CBT which will not help). This must be the only disease where the more sick the patient becomes, the less the healthcare on offer.

The time limit for commencing legal action is generally three years from the date when the negligence (ie. treatment) occurred or the date from which there was knowledge of the harm caused by it. Many patients who are severely affected may remain incapacitated for a very long time – even permanently – and so never feel able to consider taking on the demands of a legal challenge. Some may never even realise that legal action is a route available to them.

It is also possible that some patients have consulted lawyers about the possibility of taking legal action but were advised that, with the NICE guidance recommending GET as an appropriate treatment for “CFS/ME”, any medical negligence claim was unlikely to succeed. The patient community has lobbied NICE to remove that recommendation as a matter of urgency but it has failed to do so.

However, since the submission of that patient survey, the position has changed. If, for example, an NHS trust was sued by a patient (or group of patients under a Group Litigation Order/GLO) and the trust attempted to use the NICE guidance as part of its defence, it would now have less chance of success than previously – although that’s not to say that the claim would succeed automatically. But the goalposts have shifted – a little.

[Edited for clarity: unlike the US, the UK does not have class actions. The GLO process (see above) is used here instead.]

The challenges in making a claim

The task can be overwhelming. Proceedings can continue for years. The expert advice which would be essential for any prospect of success is very expensive, although there are alternative ways of funding an action.

1. Evidential

The amount of work involved in preparing material to support the action, and the amount of energy that would entail, is extremely daunting. Ideally, the patient (or their carer) should keep a private, personal diary or journal of the treatment undertaken and the changes which then occur. Of course, that’s all very well if the patient knows that they will be taking legal action but, of course, no one starts out treatment on that basis unless warned in advance.

A journal compiled later on would do but will carry less weight evidentially; memories fade and become unreliable, as courts well know. One of the purposes in writing this post is to alert those who have recently undergone treatment, and those about to, that keeping a detailed, contemporaneous diary would be a wise move.

The other major hurdle in proving medical negligence against a healthcare provider is securing high-quality, expert evidence from healthcare professionals who genuinely understand the underlying pathology and the historical neglect of ME patients. This severely limits the number of medically-qualified professionals who would be willing to act as expert witnesses on behalf of ME patients and who could provide credible evidence in legal proceedings.

Patients in most illness groups have a bank of professional medical witnesses from which they can select an expert in whom they have confidence. The choice for ME patients is extremely limited. In the case of Friends Life v Miley [2019] EWCA Civ 261 suitable experts were found as Mr Miley – who was unfortunately described as a “CFS” patient – was ultimately successful in his claim against Friends Life (now Aviva) for their refusal to pay out on his income protection insurance policy. However, I suspect the search for such witnesses was not straightforward.

2. Cultural

This is the biggest challenge facing the ME community, especially in the UK, but also more widely in other countries. There has been a systematic cultivation over the last thirty-five years of a widespread perception of ME as a largely psychosomatic condition which can generally be fixed by some therapy and exercise with perhaps a few anti-depressants thrown in for good measure.

This unhelpful narrative also extends into a depiction of patients themselves as being frequently militant, dangerous and abusive towards the healthcare professionals who try to help them. I have written about this previously in a series of posts entitled “Changing the Narrative“.

This cultural mismatch between perception and reality remains the single most intractable problem facing the international ME community. It pervades all aspects of everyday life – political, medical, scientific, social, historical, popular – and even legal. Everyone comes to any specific task within those settings with their own particular preconceptions. If these are mostly negative, then inevitably this will adversely affect every decision made and every action taken.

It is up to the ME community to address this attitudinal problem. It’s a massive undertaking – but no one else is going to do it. For more on this, see my post Changing the Narrative #3

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Surviving litigation requires a great deal of commitment and fortitude – not easy when you’re living with an incapacitating chronic illness. The physical and emotional toll can be enormous. Nevertheless, all of these challenges could be met with the right support and advice.

[Edited for clarity: this post deals only with the situation for adults. The considerations relating to litigation on behalf of children are different.]

So who should help? 

I have, on several occasions in the past, attempted to find out whether or not any of the bigger UK ME support charities have provided financial and practical assistance to any potential litigants at any stage. However, no one has responded to my enquiries so I am none the wiser.

Most causes on behalf of individuals can only proceed with the backing of a relevant pressure group or charity, unless the individual is very wealthy and well-supported in their own right. In the absence of any evidence to the contrary, I do wonder why none of the ME charities have become involved in supporting a individual in large-scale legal action. Or, if they have, what was the outcome?

There may well be answers to my questions and, if so, I would be grateful to hear them. However, if none are forthcoming, then perhaps it’s time that one of the established ME charities stepped up and considered providing appropriate legal support to an ME patient who has been seriously harmed by GET, particularly if the harm has been caused since April 2019.

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And finally, because it can’t be said often enough:

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 

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*This assertion is based on anecdotal evidence from social media

 

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For more information about me and about my work please see the About section of this blog.

NOTE: this post does not constitute legal advice nor can it be applied to any individual case. Anyone who is considering legal action MUST take independent expert legal advice.

There are various reputable firms of solicitors who specialise in this field of law. Most consultations and case preparation can now be done online.

 

Life in the Time of CoronaVirus #2: the Rule of Law, a Shifting Political Landscape and a “Clash of Arms”

April 6, 2020

The first part of this post, “Life in the Time of CoronaVirus: Democracy, Data and Saving Lives“, was to be followed up by a second part: “The Rule of Law and Cultural Differences”.

Two weeks on from Part One and huge amounts have been written and broadcast on the issues explored in Part One and the proposed topics for Part Two. Events are moving at breakneck speed. Information overload has reached spectacular new heights. On 4 April 2020, the UK’s Labour Party elected a new leader, in a re-setting of Party policy. As a result, this is a substantially amended version of the original Part Two.

Firstly, a brief reminder of the theme of these posts, from the introduction to Part One:

Planet Earth is currently in the grip of a pandemic, the disease COVID-19, more commonly known as CoronaVirus. The ongoing emergency is creating – and will continue to create – events which are without precedent in modern times.

An inevitable consequence of this ongoing crisis is that certain uncomfortable discussions which have so far been kicked down the road can no longer be ignored. Civil liberties versus the imposition of emergency government powers is now high up the agenda. A Pandora’s box of mass connectivity, state surveillance and human rights is exploding as panic seizes the world.

Debating democracy

The consequent debate functions as a reality only in states which count as full democracies (see The Economist Intelligence Unit’s Democracy Index here). Below that level, the discussion is little more than lip service. In hybrid and authoritarian regimes, it does not exist and, if attempted, may be brutally suppressed.

It is therefore incumbent upon the full democracies of the world to continue the debate with urgency and vigour, even in the face of ongoing catastrophic turmoil and terror. The highest standards of protection of both individual and collective rights, whilst subject to review in times of emergency, must be maintained, even if few choose to follow them.

A shift in the political landscape: where now for the rule of law?

The tension between the imposition of emergency powers and the preservation of a democratic rule of law has generated endless debate over the centuries. In times of national and international emergencies, such as the current CoronaVirus pandemic, the debate increases exponentially. Ultimately, the purpose of state emergency powers should be to balance maximum public protection with minimal interference in the day-to-day rights of citizens.

This recent post from the Strasbourg Observers blog sets out some of the practical considerations relating to COVID-19 and the European Convention on Human Rights. This article from the New York Times ($) summarises the position in the United States.

In the UK, the Labour Party has lost the last four general elections. The last of these, in 2019, was disastrous both for the Party and the country. At this point, the Party fractured irretrievably, triggering the election of a new leader, and the country lost any semblance of an effective opposition in Parliament. Neither of these occurrences is healthy or desirable for democracy, especially not in a time of international crisis.

A brief biography of the newly-elected leader of the Labour Party:

Sir Keir Starmer is a barrister. He was called to the Bar in 1987, was appointed Queen’s Counsel in 2002, held the post of  Director of Public Prosecutions from 2008-2013 and received a knighthood for “services to law and criminal justice” in 2014.

He has been a long-standing member of Doughty Street Chambers, a high-profile set of chambers specialising in, amongst other things, human rights and civil liberties. In 2002, he became joint head of chambers. In 2015, he was elected Labour MP for Holborn and St Pancras, a north London constituency.

Citizens of many countries are understandably concerned about the impact of emergency government powers on civil liberties and human rights. How this pans out will vary enormously from country to country. In the UK, this election of an experienced lawyer as Leader of the Opposition may prove to be unexpectedly timely.

When the Labour leadership election began, following the December 2019 general election, COVID-19 was merely an embryonic flutter, confined to East Asia. The situation as we find it in April 2020 could not have been anticipated at that time. So, in an era of rising fear and uncertainty, the election of a pragmatic lawyer with a wide range of experience in human rights law, could be viewed as a curious moment of serendipity, whatever political stance is espoused.

If the new Leader of the Opposition can take a robust but collaborative approach and is willing and able to demand accountability and transparency from government, then so much the better. Ideology can inform and guide the formulation of political strategy; however, it cannot, on its own, provide an effective healthcare system or a thriving economy – or indeed, a viable disaster management plan.

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“In this country, amid the clash of arms, the laws are not silent. They may be changed, but they speak the same language in war as in peace.”

Those words are taken from the 1941 case of Liversidge v Anderson, an English case which many are now digging out and dusting off for its resonance with today’s circumstances. In fact, the case itself presents something of a conundrum.

The challenge in Liversidge was to the draconian powers conferred by the Defence (General) Regulations of 1939 which had been passed in expectation of the subsequent hostilities of the Second World War. Mr Liversidge failed at every stage up to and including the House of Lords. As Edward Garnier QC recently observed in The Times (£), the Regulations were “contrary to our libertarian customs and traditions and, indeed, in line with the type of power seized by the Nazis we were about to fight.”

However, the case has become legendary not for its outcome but for the dissenting judgment of Lord Atkin, from which the above quote is taken. It is generally accepted that the case was wrongly decided and reflected the fear and uncertainty of the times rather than a measured application of English jurisprudence and judicial independence.

The introduction of emergency powers in times of crisis may well be acceptable. However, if that extends into abuse of power and executive overreach, then it is not. The recent shocking images of migrant workers in India being sprayed with disinfectant as they try desperately to return to their homes is just one example of such behaviour and is to be utterly condemned.

Whose right is it anyway?

It is arguable that this debate is a luxury and only available in rich countries which confer high levels of democratic protection on their citizens. Even more reason, therefore, why those privileged nations should continue vital scrutiny of executive power and maintain vigilance over their citizens’ individual and collective rights. All extended emergency powers must satisfy the fundamental requirements of necessity, lawfulness and proportionality.

The last word must go to Lord Atkin in Liversidge:

I view with apprehension the attitude of judges who on a mere question of construction when face to face with claims involving the liberty of the subject show themselves more executive-minded than the executive…….

It has always been one of the pillars of freedom, one of the principles of liberty…..that the judges are no respecters of persons and stand between the subject and any attempted encroachments on his [sic] liberty by the executive, alert to see that any coercive action is justified in law.

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A chilling postscript

As I finish drafting this post, it is a sunny Sunday afternoon, the first warm day of spring. The UK is in CoronaVirus lockdown and leaving home is not allowed except for certain specified and limited purposes.

My balcony overlooks the private communal gardens of the estate. Many residents are outside enjoying the weather, mostly sitting quietly, doing exercises or playing games in family groups. Social distancing is, for the most part, being observed successfully as the gardens are quite extensive.

Suddenly, I am startled by loud, authoritarian voices. Police officers have entered the area and are walking around advising people in no uncertain terms that they should not be there. The atmosphere changes abruptly from peaceful relaxation to shock and alarm. I feel it too, even though I am only an observer.

Gradually, most people collect their belongings and their children, and head quietly for home, clearly stunned. However, a few do not take kindly to this intrusion and curtailing of their personal liberty and start hurling vociferous abuse at the police officers. I am stunned and shaken by what I am witnessing.

Fifteen minutes later, all is quiet. The garden is empty. The sun is still shining. However, shortly afterwards, one man returns and sits casually but defiantly on a bench. A few more determined souls trickle back. “Surely this is private space? I can do what I like here. It’s a free country – isn’t it? Bloody disgraceful!”

Eventually, the police officers return…….

Life has changed. The future is unknown.

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For more information about me and about my work, please refer to the About section of this blog.

Life in the time of CoronaVirus #1: Democracy, Data and Saving Lives

March 23, 2020

Planet Earth is currently in the grip of a pandemic, the disease COVID-19, more commonly known as CoronaVirus. The ongoing emergency is creating – and will continue to create – events which are without precedent in modern times.

An inevitable consequence of this ongoing crisis is that certain uncomfortable discussions which have so far been kicked down the road can no longer be ignored. Civil liberties versus the imposition of emergency government powers is now high up the agenda. A Pandora’s box of mass connectivity, state surveillance and human rights is exploding as panic seizes the world.

Debating democracy

The consequent debate functions as a reality only in states which count as full democracies (see The Economist Intelligence Unit’s Democracy Index here). Below that level, the discussion is little more than lip service. In hybrid and authoritarian regimes, it does not exist and, if attempted, may be brutally suppressed.

It is therefore incumbent upon the full democracies of the world to continue the debate with urgency and vigour, even in the face of ongoing catastrophic turmoil and terror. The highest standards of protection of both individual and collective rights, whilst subject to review in times of emergency, must be maintained, even if few choose to follow them.

Data Protection

In such a world, protection of personal data sounds like an anomaly – mundane, even. Nevertheless, on 19 March 2020, the European Data Protection Board (EDPB) issued its “Statement on the processing of personal data in the context of the COVID-19 outbreak” [see below]. The European Union has the highest standards of data protection in the world, closely followed by New Zealand and Canada. In the United States, it is haphazard, varying dramatically between individual states (but see Inforrm media law blog’s post which states: “…Congress is considering passing a Data Protection Bill in a bid to harmonise data protection regimes nationwide…“).

Our lives are now mapped and interpretable via digital data, in addition to subsisting analogue data. Everyone who possesses a device which is connected to the internet is continuously generating unimaginable quantities of data about themselves and the intimacies of their lives 24/7. The few who are not connected in this way are either doing so by choice, by default (eg. age/incapacity) or because they are living in a state of deprivation; technically, in this brave new world, they barely exist.

A large proportion of personal data is highly sensitive and therefore wide open to abuse by anyone with access, including governments and commercial enterprises. Health data is such an example; add your location, contacts, eating/fitness/shopping/sexual habits and each of us becomes an open access dataset for a huge number of interested parties.

Data = Information = Power

In the time of CoronaVirus, data, even flawed or patchy data, is the greatest weapon of governments in stopping the spread of the virus and developing appropriate medical treatment. The more information which is harvested, the greater the chance of success in containing the disease.

However, this involves the provision of highly sensitive information about individuals’ health status and a wealth of other activity such as movement of people, alone or collectively. We have only to look at the vicious government clamp-down of the young protesters in Hong Kong during 2019 to see how such information can be abused by those who extract it.

In many cases, that information can be handed over willingly and in exchange for increased convenience in everyday life such as smart purchases, access to essential services and ease of travel. Personal data is routinely collected and used by governments, commercial enterprises, civil society institutions and a host of others. This may happen with or without consent and/or, of greater concern, by stealth.

So this is Social Contract 3.0 – with wildly unequal contracting parties on all sides. Never before has the “legitimacy of the authority of the state over the individual” been so open to abuse. In addition, the big tech companies such as Google, Facebook, Alibaba, Amazon, ByteDance (TikTok) etc. now also operate as virtual states. Their contribution to the pool of government data is frequently murky and unaccountable.

As a result, the social contract between state and citizens has morphed into a commercialised behemoth that knows no borders and observes few regulations. Surveillance capitalism has come of age and is becoming the preferred system of the global community.

The trade-off?

That said, it is beyond doubt that East Asian countries such as Taiwan and South Korea have used mass connectivity to control the spread of CoronaVirus and save lives, with encouraging results so far. In the last few days, Wired magazine has produced two articles examining the situation in each country. The Taiwan piece (“Taiwan is Beating the Coronavirus. Can the US do the Same?“) refers to the “the adroit use of technology”. The South Korea article (“What the world can learn from South Korea’s coronavirus strategy“) says the following:

South Korea is one of the most wired countries in the world, where everybody uses cell phones for just about everything, and [the government] was able to use our cell phones to not only track but send warnings, like ‘watch out, there’s a Covid-19 patient in your vicinity’……..One significant trade off South Korea has had to make, and that the UK [and EU] may soon grapple with, is the trade-off between public health and civil liberties. Not just the restriction of movement – cancelling schools; home working; ending mass gatherings – but also the erosion of privacy.

The debate is therefore framed as a) the responsible use of data can save lives but b) it can also act as a vehicle for egregious state intrusion into the lives of its citizens. Inevitably, this extends into the wider discussion about the exercise of the rule of law in times of national/international emergencies, such as we have now.

Without doubt, urgent action is vital and difficult decisions must be taken at speed. Nevertheless, democracy requires that the state protects the privacy and integrity of its citizens as far as is humanly possible. Derogation from that central tenet should only occur in extreme circumstances and with strict checks, balances and time limits.

The European statement

Against this backdrop, the EDPB issued its statement a few days ago. It provides a timely and necessary reminder of the points set out above. The first paragraph reads as follows:

Data protection rules (such as the GDPR) do not hinder measures taken in the fight against the
coronavirus pandemic. The fight against communicable diseases is a valuable goal shared by all nations
and therefore, should be supported in the best possible way. It is in the interest of humanity to curb
the spread of diseases and to use modern techniques in the fight against scourges affecting great parts
of the world. Even so, the EDPB would like to underline that, even in these exceptional times, the data
controller and processor must ensure the protection of the personal data of the data subjects.
Therefore, a number of considerations should be taken into account to guarantee the lawful
processing of personal data and in all cases it should be recalled that any measure taken in this context
must respect the general principles of law and must not be irreversible. Emergency is a legal condition
which may legitimise restrictions of freedoms provided these restrictions are proportionate and
limited to the emergency period.

The full text is at the end of this post.

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Cultural issues

Both the Wired articles allude to the cultural differences between East Asian countries and the more liberal western democracies. In recent years, I have lived in East Asia as well as the UK.

The potentially sensitive topic of cultural differences will be considered in more detail in part 2 of this post: “Life in the Time of CoronaVirus #2: the Rule of Law and Cultural Differences“.

[EDIT 6 April 2020: the focus of #2 has changed and is now “The Rule of Law, a shifting Political Landscape and a ‘Clash of Arms’“.]

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For more information about me and about my work, please refer to the About section of this blog.

Click to access edpb_statement_2020_processingpersonaldataandcovid-19_en.pdf

Public Law: FOIA revisited + complaints about complaints

October 7, 2019

NOTE for new readers: I have lived with the illness myalgic encephalomyelitis (ME) since 1981. ME is sometimes conflated/confused with the condition known as chronic fatigue syndrome (CFS) and is therefore often referred to, misleadingly, as “ME/CFS” or “CFS/ME”. For more information see About.

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Introduction

The following observations apply to the UK but most western countries work within a broadly similar discipline. However, unlike most developed countries, the UK does not have a written constitution which can make the pursuit of legal remedies slightly more challenging.

The pursuit of due process, as part of public law, can be daunting. Navigating the practice and procedure of Freedom of Information Act (FOIA) requests can be perplexing and appear impenetrable (but see BRIEFING NOTE below). Formal complaints procedures against government departments and public/private institutions often present a similar type of challenge.

Sometimes there is an unavoidable crossover between needing information and making a complaint. In such circumstances, it is necessary to work out whether the priority is to get the information in order to pursue the complaint or to make the complaint to establish what information might then need to be requested. It is a question of deciding which way round presents the most logical pathway to follow.

The basic, staged formula for the FOIA process is common to most procedures, whether requesting information, pursuing a complaint or making use of a statutory (ie. dictated by Act of Parliament) or regulatory framework. It can be helpful to remember this if you are considering a particular course of action in public law.

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Finding the pathway

When considering making a complaint against any organisation, the important thing is to establish what the process is and then to follow it. This can be easier said than done.

Most organisations have details somewhere on their website (often well-hidden) or you can get the information directly from the body itself by phone, email or ordinary mail. This may take a bit of persistence – after all, who wants to make it easy for people to complain about them? – but it should work in the end.

If you still can’t find the information you’re looking for, then it may be necessary to pursue another route such the relevant ombudsman or regulatory authority. Whilst the general practices and procedures will be broadly similar, each individual body will have its own specific pathway.

Follow the procedure

Government bodies and most public/private institutions are required to have a formal requests/complaints internal procedure. Unfortunately, these are frequently (and, some might argue, deliberately) very difficult to access and inherently opaque. They are invariably laborious and time/energy-consuming. However, unless the full internal procedure is followed closely – often involving many stages of escalation – it is almost inevitable that the request/complaint will be rejected.

Comments often appear on social media about requests/complaints to various institutions being knocked back without good reason. This rejection may then be interpreted as a perceived conspiracy against the requestor/complainant or the group they represent.

Whilst the conspiracy theory may be accurate, the more usual reasons for requests/complaints being rejected are either the complainant’s failure to follow the prescribed procedure or simple administrative incompetence by the body in question. More often than not, the complaint is not without merit but is just defeated by a failure to understand and work within the required process.

Complaints and risk of defamation action

When pursuing a legitimate complaint, even a strongly-worded one, the complainant is generally protected against defamation action from the subject of the complaint. This is known as the defence of qualified privilege.

However, it’s important to note that other people who repeat the complaint in public elsewhere (on social media, for example), will not be covered by privilege and therefore may be at risk of legal action.

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The statutory route

In cases where there is a statutory regime in force (such as FOIA requests) once the internal process has been exhausted, the next step is to appeal to the First-Tier Tribunal (see BRIEFING NOTE below).

Judicial review

In other types of cases, where a full internal appeal process has been completed and the matter remains unresolved, the complainant can apply to the High Court for a judicial review of the decision of the relevant body. If possible, it is wise to seek professional advice at this stage.

Judicial review is a complex, often lengthy and potentially expensive process. It is not possible to take this route until the full internal procedure of the relevant body has been exhausted. Missing out any of the earlier stages means that the application will be rejected. Judicial review is not automatic as of right and strict criteria must be fulfilled.

The first stage is to apply to a High Court judge for permission to launch proceedings. The judge will consider the merits of the case and either grant or refuse permission. Many applications fail at this stage as the threshold has become much higher in recent years in order to reduce the previously increasing number of unmeritorious applications. If permission is granted then the case can proceed.

 

 

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The briefing note

In 2015, I was asked by two journalists for advice on making a request for information under the FOIA process. I drafted a briefing note on the workings of the English Information Commissioner’s Office (ICO) and the regime relating to FOIA requests. I published the original briefing note in a post from 2015.

A number of recent events in the world of ME campaigning demonstrate that both FOIA requests and complaints procedures can present major challenges. It occurred to me that it might be helpful to publish an updated version of the briefing note to assist anyone who is considering making a request for information under FOIA.

Given the similarity of the basic steps under both statutory and non-statutory regimes, it might also be of use to anyone considering making a complaint to a public or private body or institution.

 

 

BRIEFING NOTE 

 

The English Information Commissioner’s Office and the Freedom of Information Act (FOIA) regime

 

The ICO: background information

The Information Commissioner’s Office (ICO) is overseen by the Information Commissioner (IC). Some of the IC’s powers (such as drafting decision notices) can be delegated to employees or other agents.

The ICO is a public body and independent regulator. The IC is charged with overseeing both access to information under the Freedom of Information Act and the protection of personal information under the Data Protection Act. This dual responsibility creates a joint function and – arguably – the potential for a conflict of interest, although that rarely seems to occur in practice.

Data Protection

Under the Data Protection Act 2018, the IC has the power to impose financial penalties for certain offences (such as unlawfully obtaining personal data). Some argue that those powers are insufficient for effective enforcement of the system.

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The FOIA process

The English FOIA regime was created by the Freedom of Information Act 2000. Scotland and Northern Ireland have similar but separate regimes. Any citizen from any country can make an English FOIA request.

The presumption is that all information should be available to anyone, regardless of motive, unless it is covered by one or more of the exemptions prescribed in the Act, in which case it can be withheld.

In 2015, an Independent Commission was set up with task of reviewing:

  • Whether there is an appropriate public interest balance between transparency, accountability and the need for sensitive information to have robust protection
  • Whether the operation of the Act adequately recognises the need for a ‘safe space’ for policy development and implementation and frank advice
  • The balance between the need to maintain public access to information, the burden of the Act on public authorities and whether change is needed to moderate that while maintaining public access to information

The final report was published in March 2016. For more information, see here.

Relevant public authority

Information requested under FOIA must be obtained from the relevant “public authority” as defined in Section 3 of the Act.

By way of example: in the case of requests for data from the PACE trial of chronic fatigue syndrome (CFS), the public authority is usually Queen Mary University of London (QMUL). This is because St Bartholomew’s Hospital where Professor Peter White (principal investigator on PACE) practises, comes under the umbrella of QMUL. All teaching hospitals in the UK are attached to a university.

Person making the request

Anyone can make a FOIA request. Requests must come from a clearly identifiable requestor, usually an individual.

If a group wishes to make a FOIA request, it should normally be made by one individual on behalf of the group. This is to ensure that the identity of the requestor remains clear. It is also intended to deter the making of multiple requests for the same information as many authorities have limited resources for dealing with FOIA requests.

The initial request

Making an initial request is straightforward. There is no specific fixed method but there are certain requirements under Section 8 of FOIA for it to be treated as a valid request:

  • The request can be made in written format (including social media, apparently, although I wouldn’t advise it as a general rule)
  • The real name and address of the requestor must be evident.
  • The requested information must be described

In theory, the motive for making the request is irrelevant, although of course, there may sometimes be speculation by the authority receiving the request.

 

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Stages of making a request

[For the ICO’s how-to guide, see here ]

  1. Make initial request to authority. Response should be within 20 working days. If that is refused:
  2. Ask the authority to carry out an internal review of the handling of the request. Again, response in 20 working days. If still refused:
  3. Complain to the IC (no time limit but generally within three months) who will make a decision and publish the decision notice. The requestor’s name is not usually published at this stage.

After this, the process changes significantly as it shifts into the judicial system and judges are involved in decision-making. Full judgments, including the names of all parties, are published. The stages of appeal are as follows:-

  1. Appeal from the IC’s decision is to the First-Tier Tribunal (Information Rights) – the FTT – within 28 days. Time extensions for appeal can be granted. To the best of my knowledge, the FTT is the furthest point any appeal relating to the PACE study has reached so far. If refused, then an appeal from here onwards is on a point of law only (notice to be given usually within 28 days) to:-
  2. The Upper Tribunal, then
  3. The Court of Appeal, then
  4. The Supreme Court and finally
  5. The European Court of Human Rights (ECtHR) in Strasbourg

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A note on time limits

Time limits are not rigorously enforced although there can be penalties for serious infringements. The process can be very protracted; typically, a request might take 6 months from the first request to getting a decision from the ICO.

Cases which are taken as far as the European courts take many years to complete (and require very deep pockets). However, the same applies to cases from all branches of the law.

Vexatiousness

This is inevitably a problematic area across most branches of the law, not just FOIA. Section 14 of the Act deals with the basic issue but the term is not specifically defined.

It is covered by the ICO’s guidance and is discussed in the evolving case law. The current leading case is Dransfield v Information Commissioner and another and Craven v Information Commissioner and another [2015] EWCA Civ 454;  [2015] WLR (D)  215

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Comment

The FOIA system was designed as a simple process which could be used by anyone to obtain information held by public authorities in England and Wales. It was intended for use at zero or minimal cost. In many cases it works well but inevitably that can depend on the efficiency of the public authority and the ability of the requestor to understand what to do and how to do it.

As with all systems, it is open to abuse, both by requestors with an axe to grind and by public authorities seeking to withhold information for reasons which may not be entirely even-handed.

Once the process reaches the judicial stage (the FTT), it follows the same patterns, benefits and limitations as any other type of legal action.

Valerie Eliot Smith

Revised October 2019

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