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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. 


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:



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 The existing guideline is dangerously inaccurate and outdated.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.


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 


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.


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.


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.


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.


“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”


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.


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“.


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.


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.



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.


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).


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.


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 yet have class actions (although that is starting to change, particularly in data protection litigation). The GLO process (see above) is used here instead. Representative or “mass” actions are another option.]

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


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.


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 


*This assertion is based on anecdotal evidence from social media


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.


“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.


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.


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.


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’“.]


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.



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.


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.


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.





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.





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.


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.



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


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.


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



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

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 


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

Thank you for visiting this site. It was created in August 2012. The date above, 7 June 2019, relates to when I set up this “Welcome” page.

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.


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.


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



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. Strategic communications and the media + “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.
  3. Karina Hansen, “Prisoner of Denmark”
    Karina is a young Danish woman, diagnosed with ME, who was removed forcibly from her family home in 2013. She was relocated in a “neurocenter” as a de facto psychiatric patient against her wishes and those of her family. She remained there for three and a half years. 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.
  4. 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
  5. 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 an essential component of any functioning democracy. It is a vital tool in civil society for requiring transparency, accountability 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.
  6. Open Justice
    This category contains a range of posts on issues relating to open justice, including some academic articles. It contains ME-related posts and some which deal with other topics. The full list can be viewed in the Open Justice category.
  7. 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.


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].

Anonymity, open justice and a vulnerable individual: the troubling case of Justyna

May 22, 2019

In March 2019, I came across a case which gave me cause for concern. It was a decision of the High Court of England and Wales concerning the identification of a claimant in a clinical negligence action.



The claimant suffered the trauma of a stillbirth as a direct result of the negligence of the defendant hospital trust. This in turn caused her significant psychiatric injury and she became a highly vulnerable individual who required extensive treatment. The hospital admitted liability for the stillbirth but contested the amount of additional damages claimed for the psychiatric harm.

Because of the dispute over damages, a full hearing was necessary to determine quantum (amount of damages) and identification of the claimant became an issue. She applied, as was her right, to remain anonymous. In accordance with the principles of open justice, she did not request that the matter not be reported, only that she not be identified as this would cause her further distress. It would also inevitably lead to her young children becoming identifiable.

The judge refused her application. 


I contacted The Transparency Project to see if they were covering this case. They weren’t – but I was asked if I would write a critical analysis of the judgment. My article was published here on 7 May

On 11 May it was also published by Inforrm‘s media law blog here

The article was submitted to the UK Human Rights Blog where the case has also been covered here and here. Unlike mine, neither post is critical of the judge’s decision. So far, there is no sign of my article being used. If that changes, I will update this post accordingly. 

This is the full text of my article (approx 3600 words):




On the 8 March 2019, interim judgment was handed down in the apparently unremarkable case of Justyna Zeromska-Smith v United Lincolnshire Hospital Trust [2019] EWHC 552(QB). The decision appears to have been based on the following reasoning:

  • A woman who had suffered the trauma of a stillbirth resulting in a consequent need for psychiatric treatment, where liability for the stillbirth was accepted by the health authority, was not entitled to Article 8 protection of private life anonymity in a hearing on quantum, despite the right being clearly engaged – and neither were her children
  • A woman in the above situation can expect that she may be publicly identified if she decides to contest the settlement offered by a health authority therefore, in the light of that fact, she should consider carefully whether or not to accept the settlement offer
  • Editors should generally be free to decide whether a story will attract greater public interest (ie. increase viewing figures/protect business model) without judicial restraint. If the subject of a story is named, then the “human interest” factor is greatly increased therefore the Article 10 freedom of expression right of the media should prevail over individual privacy rights

This reasoning is not only flawed but it also caused – and will continue to cause – enormous unnecessary suffering to the claimant and her family.


The facts of the case

The claimant, Justyna, is a Polish national who came to London in 2004. She married a British man in 2007 and they moved to Lincolnshire. In 2012, she became pregnant. The couple were overjoyed and prepared for the birth of their daughter, Megan. However, all did not go well and in May 2013, labour was induced, ten days after the due date. It transpired that Megan had died in utero but an eighteen-hour labour had to proceed for Justyna to give birth to the couple’s stillborn daughter. She was discharged from hospital on 28 May 2013, the day after the birth.

In the fullness of time, Justyna and her husband were able to have two sons, in 2015 and 2018. It appears to be accepted within the judgment that she continued to need psychiatric treatment for various issues as a direct result of the trauma and grief of Megan’s stillbirth. These issues had a negative impact on her relationship with both her husband and her sons as a consequence of her experience of the stillbirth.

Justyna’s life was forever changed, as often happens following deeply traumatic life events; it appears to have become an existence lived necessarily in the shadows. According to the judgment, counsel Susan Rodway QC, argued the following:

“Personal privacy is said to be all important to the Claimant such that she changed jobs because her work colleagues were aware of the stillbirth of the Claimant’s daughter and she then concealed this background from her new employers and work colleagues. She avoids interaction with strangers.”

The defendant (“the Trust”) admitted liability for the stillbirth and conceded that Justyna was entitled to damages to represent her loss arising from the unsuccessful conclusion of her pregnancy. The judgment then goes on to say: “However, the Claimant also seeks substantial damages for what is claimed to be a pathological grief reaction combined with depression, which has proved intractable.” It appears that this was the sole disputed issue between the parties.


The application for anonymity

As Ms Rodway pointed out, personal privacy had become essential to Justyna’s survival in coping with the continuing trauma of her circumstances. Mr Justice Martin Spencer summarises the events leading to his decision on that matter in the first paragraph of his judgment:

“The trial was listed to start on Friday, 22 February 2019 and Miss Rodway QC indicated that she would be making the anonymity application. The application was made on Monday, 25 February 2019 but I “parked” the application to enable the Press Association to be served with the notice. On 26 February, I received submissions in writing from the Press Association and Miss Rodway resumed her application. Having heard argument, I refused the application and these are the reasons for that decision.

The Trust took a neutral stance on the application. The Press Association – unsurprisingly – opposed it.


The argument for anonymity

The application can be summarised in the following extracts from the judgment:

“The claim has already had a substantial impact on the Claimant’s children and has put a significant amount of added pressure on the Claimant’s marriage. There is also a definite risk of suicide. Having to relive and discuss such painful past events and for those events to be shared with the public in such a way that the family can be identified will be very difficult and could easily lead to irreparable damage to the family unit. This risk of interference with private family life, which is self-evident, can be alleviated with the making of an anonymity order.

Part of the Claimant’s objective for bringing an action against the Defendant was to try and achieve justice for what has happened and to ensure the Defendant is held accountable for the mistakes that have been made. However, I would respectfully argue that the public interest can be served without the need for disclosure of the Claimant’s identity.” (my emphasis).


“Miss Rodway QC, who represents the Claimant, has argued that the principle of open justice is satisfied by the Defendant being identified without identification of the Claimant. She submits that the trial includes matters of a deeply personal and private nature concerning the Claimant’s mental health, her relationship with her two children, her intimate medical history and her past suicidal ideation which included thoughts of ending her life as well as that of her son. Although she is not a protected party [ie. lacking capacity under the 2005 Mental Health Act], she is described as a “highly vulnerable individual” and the interests of her young children should, it is submitted, be weighed in the balance. It is submitted that publication of the Claimant’s identity will serve no useful public purpose but will risk considerable further harm to the Claimant’s already precarious mental health and harm to her children and family.” (my emphasis).

The following points were also submitted in support of the application:

  • “In the current climate of swift and widespread dissemination via social media, there is always the risk that some individuals may react in an extreme and negative way to parts of the evidence … it is not fanciful to consider her receiving harmful abuse which would have repercussions for the Claimant and her family. There is also the risk, knowing that the Claimant is Polish, this could extend to racial abuse;
  • The publication of the Claimant’s identity would necessarily identify her children. Public knowledge of the facts of their mother’s mental health issues risks real harm to them. In addition it would provide the opportunity for her children, at a later stage, to discover and read facts of the case concerning them which would be likely to cause them considerable harm and distress…
  • The principle of open justice can readily be met in the present case without the need to identify the Claimant or her family.” (my emphasis)

It is important to note that the application did not include a request that the proceedings be held in private, only that the anonymity of Justyna and her family be preserved. There was no attempt to prevent the case from being reported generally.


Protected party/highly vulnerable individual

Justyna is described by Ms Rodway as a “highly vulnerable individual” because of her traumatic experience and need for psychiatric treatment. She was not strictly speaking a “protected party” (ie. a child or someone lacking capacity under the Mental Health Act 2005) and thereby entitled to anonymity as of right. Nevertheless, by virtue of the necessity for psychiatric treatment alone, her circumstances amounted to those of someone who could be treated as being in a similar category to a “protected party” and therefore entitled to the same protection.

The entire history of Justyna’s medical treatment as laid out before the court (and therefore also the public, in due course) is highly sensitive personal information. It is therefore arguable that the court could have taken a view in line with the fundamental principles of data protection and accepted the existence of a confidentiality imperative in these circumstances.


The interests of the children

The court does not appear to have properly considered the interests of the children involved in this case. Whilst they were not parties to the action, their lives would be directly affected by the outcome of this application. If their mother was identified then they would automatically also become identifiable.

There is a strong body of case law in support of preserving the rights of children who could, through no fault of their own, become identifiable as a result of the involvement of one/both of their parents in legal action. These cases range from ZH (Tanzania) v SSHD [2011] UKSC 4 (an immigration case) and ETK v News Group Newspapers Ltd [2011] EWCA Civ 439 through to PJS v News Group Newspapers Ltd [2016] UKSC 26. ETK and PJS involved applications for a privacy injunction by celebrity parents relating to allegations of private and sexual behaviour which the then News of the World (ETK) and The Sun (PJS) newspapers wished to publish.

In all three cases, the balancing act between the Article 8 rights of the children of the parents involved and Article 10 rights of the media came down in favour of the children’s right to protection of their private and family lives. In ZH (Tanzania), Baroness Hale stated:

“the best interests of the child must be a primary consideration. This means that they must be considered first.”

In ETK, the Court of Appeal invoked the provisions of the UN Convention of the Rights of the Child 1989 and Article 24 of the European Union’s Charter of Fundamental Rights.

Article 3(1) of the UNCRC provides that:

“In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”

Whilst this is a complex and often contentious area of law, it is hard to see how the blameless circumstances of both Justyna and her children could not have justified the upholding of their fundamental right to privacy. In any consequent proportionality test, the argument in support of the children’s rights is compelling and should far outweigh the imputed public interest in making them identifiable.


The Press Association’s response

The Press Association’s formulaic response in opposing the application acknowledged that the claimant’s Article 8 rights were engaged but should be weighed against the media’s Article 10 rights. The argument maintained that as the claimant was not a protected party then the circumstances of her case were not sufficiently exceptional to merit the granting of an anonymity order.

The Press Association invoked the Independent Press Standards Organisation (IPSO) Code of Conduct to assert that:

“[M]any of the concerns raised by the application could be met by our responsibilities under that code, particularly those sections of the guidance relating to privacy, children, suicide and intrusion into grief or shock.

…It is also submitted that many of the details of the case, especially those of a sensitive nature, would not necessarily need to be made public. Some parts of the evidence could, for example, be heard in private or protected by reporting restrictions.”

These assertions could be argued back and forth depending on your point of view.

However, suffice it to say that the safest way to preserve the undisputed “sensitive

nature” of this case would have been to accede to the request for anonymity. It is

hard to see any other method of ensuring that those sections of the Editors’ Code

would be observed unequivocally. In any event, many publishers do not observe

the Code, social media being a prime example.


The legal background

The judge then moved on to discuss the fundamental principle of open justice in Scott v Scott [1913] UKHL 2 and the provisions of the Civil Procedure Rules (recently updated, not affecting this post), in particular:

“Rule 39.2(3) provides:

“A hearing, or any part of it, may be in private if … (d) a private hearing is necessary to protect the interests of any child or protected party; or … (g) the court considers this to be necessary in the interests of justice.”

CPR Rule 39.2(4) provides:

“The court may order that the identity of any party or witness must not be disclosed if it considers non-disclosure necessary in order to protect the interests of that party or witness.”

Again, there was ample room for discretion in granting this application for anonymity but, instead, the judge chose to quote from In re Guardian News and Media Ltd [2010] 2 AC 697 at 723 in formulating the reasoning behind his decision:

“What’s in a name? ‘A lot’, the press would answer. This is because stories about particular individuals are simply much more attractive to readers than stories about unidentified people. It is just human nature…..[T]he European court holds that article 10 protects not only the substance of ideas and information but also the form in which they are conveyedThe judges are recognising that editors know best how to present material in a way that will interest the readers of their particular publication and so help them to absorb the information. (my emphasis) A requirement to report it in some austere, abstract form, devoid of much of its human interest, could well mean that the report would not be read and the information would not be passed on. Ultimately, such an approach could threaten the viability of newspapers and magazines, which can only inform the public if they attract enough readers and make enough money to survive.” (my emphasis).


Mr Justice Martin Spencer

The judge (pictured) then underpinned this approach by considering the case of In re S [2005]1 AC 593 where the identification of a parent – and therefore that of the children involved – was allowed. However, this case concerned a criminal matter – and the Guardian News and Media case related to suspected terrorist-related activity – so different public interest considerations apply. It is therefore arguable that neither of these cases is necessarily persuasive in relation to the particular circumstances of Justyna’s case.


Social media context

Both In re S and the Guardian News and Media have a further distinguishing feature which was not considered by the judge, although it was raised by counsel for Justyna in her argument. The facts and original reporting of In re S occurred in an era which predates social media. The Guardian case is from 2010 and it is arguable that even at that time, the pervasive, sometimes inaccurate and often detrimental nature of social media reporting was not yet fully appreciated. This potential threat to Justyna and her family was raised as a serious consideration by counsel but the judge remained unpersuaded.


Further cases

The judge continued a consideration of later cases by reviewing JXMX v Dartford and Gravesham NHS Trust [2015] EWCA Civ 96 and ABC v St George’s Healthcare Trust [2015] EWHC 1394 (QB). In both cases, the applications for non-identification were granted but the judge distinguished Justyna’s case on the following grounds:

“In the present case, the revelation of the matters personal to this claimant and her family are inherent and intrinsic to a claim of this nature, relating as it is to psychiatric injury suffered by the Claimant from the stillbirth of her daughter. Having chosen to bring these proceedings in order to secure damages arising out of that tragedy, the Claimant cannot avoid the consequences of having made that decision in terms of the principle of open justice and the consequent publicity potentially associated with such proceedings being heard in open court.(my emphasis).

How and why the “inherent and intrinsic” nature of this claim differed from the other two cases remains unclear. Of course, each case is fact-specific but the fundamental issue of achieving the correct balance between the case for identifying vulnerable individuals against the wider “need to know” of the public remains at their heart.


Final statements

In his final explanatory paragraph, the judge expressed his disapproval concerning the lack of notice given for the anonymity application to be made at the start of the trial. The reasons for this are not known but the normal route for any punitive action would be via an order for costs. It is to be hoped that, in this instance, Justyna was not being further penalised for that lack of notice and thereby losing her right to anonymity.

Of even greater concern is this section:

“[T]he outcome of the application may inform any decision taken by a Claimant in relation to settlement. Thus, if a Claimant in a sensitive case such as the present knows that, if the matter goes to trial, her name will be published in the press, she may consider that to be an important factor in deciding whether or not to accept an offer of settlement – in some cases it could tip the balance.”

Here, the judge seems to be suggesting that claimants in this type of action may need to gamble on relinquishing their right to privacy in exchange for the right to contest a low settlement offer – regardless of whether or not a higher award of damages is actually merited. Such an approach would be inequitable – and deeply chilling.


Subsequent publicity

The publicity following this decision was, in fact, relatively low-key and is mostly to be found in legal and media themed blogs. However, the Daily Mail published a splash (pictured above) focusing on the claim for six million pounds in damages. A recent post on Hold the Front Page called it “A win for the media”.

Note: I have not carried out a social media search regarding this case.


The feminist perspective

To extrapolate a fully-formed feminist argument from analysing this judgment might be stretching the point. Nevertheless, it is undeniable that the series of events which led to it emanated from an event which, at this point in time, can only relate to the biological and psychological experience of a woman (giving birth to a stillborn child) and its long-term consequences.

The tone of this judgment, particularly in its concluding paragraphs, suggests a pre-formed opinion regarding the appropriate behaviour of women in such circumstances rather than a balanced and objective evaluation of the arguments and evidence presented.

The subject of this case is a woman who experienced a deeply traumatic event. There was ample justification for retaining both her anonymity and that of her family. Instead, the retraumatising effect of giving evidence in the glare of publicity and publication of the judgment itself will have compounded the trauma she had already experienced. This will, in turn, be prolonged by the subsequent reporting of her case – all in the name of a spurious “public interest”.

We will never know if another judge would have made a different decision and elected to employ the perfectly legitimate legal process by which Justyna’s privacy and dignity could have been preserved. The legal argument might have been the same whoever the judge was – and therefore so could the outcome. However, the question of whether another judge might have arrived at a different conclusion hangs heavy over this case.


Open Justice and the proportionality test

The requirement for open justice in the English legal system remains paramount; freedom of expression is indisputably a fundamental right in any functioning democracy. However, it is not an unqualified right and must be balanced against other fundamental rights – in particular the right to private and family life – as part of a dynamic proportionality test. Increasingly, this has become the overarching ethos of the courts in order to perform the dual function of maintaining open justice whilst also protecting the interests of vulnerable individuals.

Inevitably, this pragmatic and compassionate approach, combining as it does the competing interests of transparency and sensitivity, can often lead to misunderstandings and misreporting, as is frequently demonstrated in the work of The Transparency Project.



The case of Justyna appears to be an example of a failure to apply that proportionality test, a failure which must have caused immense suffering to the individuals involved. A different result would have been justifiable and desirable. It would also have greatly reduced the inevitable extreme distress experienced by Justyna and her family.

For whatever reason, the decision is not being appealed. Nevertheless, the damage it has caused can never be undone and its reasoning will now remain unchallenged in a higher court.





I began drafting this post at the beginning of April 2019. On 16 April, the final judgment in this case was handed down, detailing the award of damages.

The full judgment raises a number of other issues which merit further discussion. However, this post deals only with the earlier application for anonymity made on the claimant’s behalf.

The award of damages summarised from the final judgment on 16 April 2019

The original claim was in the region of six million pounds for injury arising from the stillbirth and the consequent intractable psychiatric damage to the claimant’s health and wellbeing.

This claim was later revised down to just over two million pounds.

The Trust offered £158,000. The judge awarded £272,000.




Valerie Eliot Smith is a non-practising barrister and Visiting Scholar at the Centre for Commercial Law Studies, Queen Mary University of London. She has lived with the illness myalgic encephalomyelitis (ME) since 1981. When health permits, she writes a blog at

Changing the narrative #4: the QMUL judgment explained and some observations on feedback

February 7, 2019

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

Institutional abuse is the maltreatment of a person…….from a system of power.”




Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the perception of patients who live with the illness myalgic encephalomyelitis (ME), as I have since 1981 (for more information see About). As a result of the feedback I have received and discussion which has appeared elsewhere, I am adding further posts to respond to and clarify certain points which have arisen subsequently. 

The original question was this: how should the myalgic encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?

A full list of the posts in this series can be found here.


This post runs at about 3000 words. As usual, it is broken down into short sections to make it easier for those who, like me, experience cognitive challenges as a result of ME, or any other condition. 


Comments on this blog

Please note that all comments are moderated before publication. If your comment does not appear immediately, it simply means that I haven’t seen it yet. If there is a gap between posting a comment and its appearance on the blog, this does not mean that I am exercising censorship. For details of my policy on comments, see the About section of this blog.



Parameters and rationale for writing this series: a reminder

This is a summary of the original overview:

The UK’s ME community urgently needs a complete overhaul of its communications strategy. As part of that, a media/reputation management plan should be put in place to head off further damage and generate a new and more accurate representation of the narrative surrounding both the illness itself and the patient community.

This is absolutely essential and decades overdue, not only because of its obvious intrinsic benefits but also because, if done correctly, it will permeate through and create change in every area related to developing effective treatment for the illness and respectful treatment of patients.

The effects of such a strategy would eventually begin to change attitudes towards investment in medical research, appropriate healthcare provision, social care for those disabled by the illness and the handling of  insurance claims. Ultimately, this should gradually create the impetus for a complete culture shift at every level – political, medical, social and popular.

At this point, a much, much smarter approach to strategic communications is required.

I made it clear at the beginning of each post in this series that what I was writing related to the situation in the UK. ME advocacy has taken different approaches in different countries. My comments in #2 were concerned only with UK advocacy during the last ten years, in particular the period from 2010 – 2012.

I also flagged up at the outset of each post that it contained contentious and complex subject matter. If a particular topic is sensitive and challenging then tackling it requires careful consideration. Having reflected on this matter over several years, I decided it was important enough that, whatever the consequences, it now needed to be raised.

It’s easy enough to tap into confirmation bias and write the things that people want to hear. However, whilst the resulting chorus of agreement may be very gratifying for everyone concerned, it doesn’t necessarily provide any useful material in the longer term. Sometimes the difficult stuff has to be discussed too.

As I wrote in #3 (emphasis added here):

ME as an illness is several decades behind where it should be in terms of recognition and treatment. It is therefore necessary to consider what might have been impeding progress, take stock of the current situation and consider where the patient community might choose to go from here.

This includes reflecting on past difficulties and how to avoid them in the future, looking at who currently controls the narrative and debating how that could be adjusted. The overwhelming imbalance between the group which currently controls the story and the ME patient community must be addressed.

Suggestions that I have been “used” or “misled” by other parties

It has been suggested that I have been “used” or “misled” by the SMC (Science Media Centre) and/or the BPS (biopsychosocial) group into writing about historical allegations of harassment and abusive behaviour made against the ME community. Both the SMC and the BPS group are well-known for their anti-ME patient propaganda (see #2 for a taxonomy of the groups involved in this discussion).

To suggest that a member of the ME community has allowed themselves to be “used” by either of those bodies is a very serious allegation. To say that I have been “misled” by them is just a cheap shot, presumably with the intention of undermining my personal judgment and integrity, and therefore not worthy of further comment.

I very much doubt that anything I say here will change the views of those who made those claims. Nevertheless, it goes without saying that such suggestions are without foundation.


Queen Mary University of London (QMUL)’s freedom of information Tribunal judgment

Tribunals form an integral part of patient engagement, as I discussed in #3 of this series. Following my earlier posts, a number of people have raised the issue of the 2016 freedom of information Tribunal judgment relating to PACE trial data.

This judgment concerned QMUL’s appeal against the decision of the Information Commissioner that certain data from the controversial PACE trial should be handed over to the original information requestor, Alem Matthees. The hearing of this case took place in April 2016. After a four-month wait for the judgment, the Tribunal ordered that the data should be released to Mr Matthees.

Amongst many other matters, the 48-page judgment refers to assertions by witnesses for QMUL that patient activists represented a threat to trial participants. The witnesses surmised that this perceived danger could become real if the participants were to become identifiable as a result of the requested data being released. However, the Tribunal was dismissive of the implied and unsubstantiated claims about a dangerous group of activists in the ME patient community.

The fact that the Tribunal rejected the QMUL witnesses’ assertions about patient activism is extremely helpful to the ME community in rebutting more general allegations of harassment and abusive behaviour. However, the Tribunal’s task was to consider the submissions from all parties on the legal and factual basis for QMUL’s appeal against the order to release the data in relation to the facts of this case only.

The remarks about patient activism were incidental (obiter) to the Tribunal’s ultimate finding, not germane to it, and applied only within the narrow remit of this hearing. The Tribunal’s comments about ME patient activism – and the attendant lack of acceptable evidence – were very heartening. However, the applicability of those remarks lies in the context of this judgment alone rather than as a blanket exoneration of all putative patient activity at any time.

Simon Wessely was not a PACE trial author so he was not a party in this case. The video which I discussed in #2 was associated only with Professor Wessely so its existence was never going to be a matter for consideration by this Tribunal.




This next section is an edited version of my comments during recent email exchanges. It deals with the background to the video mentioned in #2 and the reasons for examining the evidence for the harassment allegations

I had been aware of the existence of the abusive video for some years. I know others were too but perhaps not so many. The video was made approximately ten years ago. I think the reason why many people hadn’t come across it was because it was taken down so quickly which, given its criminal content, was inevitable. This is also the reason why it can’t be passed on again.
The video was sent to me in strict confidence from a known source. Revealing the background details would breach medical confidentiality and potentially identify those involved. I am not willing to do anything which might expose anyone to any risk.
The quality of the video is not a sign of high production costs. Anyone with moderate technical skills and access to good equipment could have made it at little or no cost. The person from whom it originated may or may not have had assistance in producing it but that doesn’t affect the original source.
I have watched the video and I have verified its provenance as far as reasonably possible. Its existence provided some of the original material for the stories vilifying ME patients. That negative perception has persisted and the linking of the ME community with abusive behaviour was reinforced, regardless of whether or not it was correct.
The general allegations of abusive behaviour were clearly visible to anyone with access to print and/or online media at the time. The height of the coverage was around 2011- 2013. The video would have pre-dated the PACE and the XMRV patient responses but it provided pre-existing evidence from which to construct and extend the impression of a dangerous patient community. Some charities and groups were quoted in the coverage so they clearly knew about the allegations.
The use of information given in confidence is always a difficult journalistic and legal decision in terms of whether or not to use it in publication. A public interest test must be applied and, on balance, I decided that the public interest in making the information available outweighed the problems which might arise.
By the end of 2018 (nearly two years after first seeing the video) I decided that the information which I had should be made available. A few members of the ME community appeared to be in denial about the allegations. Newer members of the community simply didn’t know about them; some have expressed their thanks to me for the telling the story.
An additional consideration was that I had, on a number of occasions, been asked by ME community members from other countries whether I knew any detail about the threats and harassment allegations in the UK. Publishing this series of posts answered those questions.
I think it’s unlikely that the plan which I suggested will be put into action. However, ultimately I decided that it was necessary to make the case for it. In doing so, the background story needed to be told in order to explain why I was making the proposal.
The background story wasn’t just about the video but an examination of the evidence generally. I used the video as a case study because it represented hard evidence which I had seen for myself and I was satisfied with its provenance.


This section is an edited version of my replies to some comments on the posts regarding the proposal for the creation of a media steering group

My purpose in writing this series was to take an overview in exploring how we had reached this point and what the areas for consideration might be, not to expand in great detail at this stage. The posts were long enough already and more detail would have confused things further at this early stage. What I am writing below still only represents a reduction of the issues which would need to be discussed.

The need to achieve community consensus in order to create a media steering group:

A consensus within the community (via existing groups and individuals) would be required in order to set up a mechanism for creating the media steering group (MSG) proposed in #3. The MSG can then be delegated with the task of making decisions on behalf of the patient community. It is not a consensus for agreement on each individual action by the group as that would be unworkable. The MSG would brief an appropriate consultancy, then consider whether to act on the advice received and how it could be implemented.

If this hypothetical scenario was to have any chance of success, it would need to start from a fresh perspective. That means not using any of the current group collaborations as, inevitably, they each come with their own baggage. A new coalition must first be established which does not favour any single pre-existing group.

The trust problem:

The biggest problem is community trust which is currently lacking because of the many self-evident internal divisions which exist, in part, because of the “divide and rule” policy of the BPS group. There is no magic formula for overcoming the trust issue. It is simply a question of whether there is sufficient collective will to move forward or whether individuals accept that the current situation may continue.

An MSG, if appointed, would need to be transparent in its dealings and accountable to the organisations. It is not feasible for it to be accountable to each individual patient. Transparency would be maintained by keeping the community informed of its actions – which does, however, involve more work for group members and would need to be factored into costing and feasibility.

The difficulty of reaching agreement between the charities/groups with their pre-existing views would be a major obstacle in this process. The best option would be for the MSG to set a completely new agenda based on lessons of the past, such as the diverging responses to PACE. Strong leadership would be absolutely essential in this scenario.

Another possibility is to aim for a completely new body to be co-opted and/or elected directly from the patient community, bypassing existing groups. However, such a group would still have to be actively recruited by someone, it would lack credibility and have to start from scratch without being able to use any of the infrastructure from existing groups.

A cohesive voice is needed:

The ME community’s media contact points in existence at the moment are based within various different groups and known individuals. There is no single cohesive voice from an identifiable national spokesperson and this reduces the power of any message. One of the aims of this exercise would be to actively foster and develop media relationships in both above and below the line activity.

For the bigger events, a recognisable national figurehead would speak with greater authority thereby raising the profile of the ME community and its concerns. As I said in the posts, this does not need to interfere with local PR arrangements.

Representatives from the media do occasionally approach the current charities and groups for comment or interview, as has been pointed out. However, these contacts are usually low-key and/or often only in response to a story that has already been put out by the SMC. The ME community should be leading the media and generating its own narrative, not simply reacting to stories from elsewhere.

A new media hub for the ME patient community:

A newly-constituted national ME community media hub should be created. This would be overseen by the MSG. Appropriate events would need to be organised accordingly and it would be made clear to all media outlets how to contact this new media hub.  Media relations would then be managed by the hub on an ongoing and pro-active basis, not just waiting for the next SMC story to break.

In response to: “But I’m not sure if this is due to the ME community handling their media communications badly, or that the odds are simply stacked against us.”:

The odds are stacked against us because, in spite of all the enormous efforts made by many groups and individuals, we still haven’t done enough to change the situation. What I don’t accept is that there’s nothing more we can do about it: there is a standard pathway to address exactly this problem and that’s what I’m proposing. To me, the mystery is why this hasn’t happened much earlier on. Again, this is not “just a bit of PR” but an ongoing strategy on a large scale, underpinned by sufficient funding and professional advice.

In response to: “Could you give some examples in the past where the media response was inadequate and working through a media steering group would have provided better results?”:

Yes – reaction to the publication of the PACE trial in 2011. We knew it would be coming and we should have had a contingency plan in place. The patient community should have had its own media briefing with experts on hand to counteract the SMC spin. That’s the way it works. Professional advice, planning and resources.

In response to: “There seems to be some disagreement about the “threats and harassment” –episode”:

The allegations were made. Again, we should have had an emergency plan ready to repudiate and/or counteract those, or any other, allegations. That is a standard part of any ongoing communications strategy. We have been living with the legacy of that failure ever since.

The need for a coordinated approach:

One of the biggest problems in dealing with any of the above is the lack of coordination amongst the charities and groups. No single spokesperson from just one group can possibly carry the necessary level of authority to address something on the scale of the harassment allegations. A nationally-coordinated, timely and appropriate response is the only possible way of managing a crisis situation. The same principle applies to every other facet of ME action or activism. Without that, the SMC continues to call the shots.

As we know, individual patients/advocates who try to argue the point are frequently ignored or ridiculed (I speak from my own experience here).

The need for expert professional advice:

The other crucial element missing from the current situation is professional expertise. This a complex and long-standing problem which requires highly specialist solutions. The MSG would be created as a mechanism for seeking that advice and setting up a platform from which to launch a proper media strategy.

The MSG would obtain the advice, assess it and then direct any action arising from it. It is not the vehicle for actually implementing it; that would have to come from the existing infrastructure of the charities, groups and individuals who make up the patient community.

To the best of my knowledge, the pathway which I suggested has not been used before in the UK and certainly not on the scale which I’m proposing.

Just to repeat two important points from this series of posts:

1.Collective responsibility does not mean that everyone agrees on the issues but that a pragmatic consensus must be attained in order to move forward.

2. It’s vital to remember that a successful communications strategy is based on a pragmatic approach to how the world actually is, not a wish for how it should be.


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. 


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