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.
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 have class actions. The GLO process (see above) is used here instead.]
The challenges in making a claim
The task can be overwhelming. Proceedings can continue for years. The expert advice which would be essential for any prospect of success is very expensive, although there are alternative ways of funding an action.
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  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.
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.