Valerie Eliot Smith: COVID-19, NICE and ME: towards litigation?

This post and some of the following posts have been moved from this thread: NICE delay publication till 9 dec 2020. Draft guideline consultation closing August.


https://twitter.com/user/status/1257598652727558145

 

I wonder if, instead of doing it for one individual at a time, whether a firm of solicitors would be willing to do lots of cases together, as a group? It makes it easier to participate as there is less work involved for the individual usually - the solicitor also reads through lots of cases so they also gain more expertise and are able to tell the individuals what exact info they need and it’s less stressful. There were firms doing this for certain DWP legislations recently.

 

@Valerie Eliot Smith sorry I forgot to tag you in my post above.

 

That would be how the Americans would do it, certainly. Like Erin Brockovich.

 

Merged thread

Valerie Eliot Smith: COVID-19, NICE and ME: towards litigation?

https://valerieeliotsmith.com/2020/05/05/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 an 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 …

 

Thank you, @lunarainbows There is a process for doing this called a Group Litigation Order, similar to an American class action. There is a link in the post which explains it further.

"...If, for example, an NHS trust was sued by a patient (or group of patients under a Group Litigation Order) 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...."

 

oh yes sorry! I missed that when reading before. I think it would be good if this could happen, if one of our ME charities could help to organise something. I am surprised that it hasn’t been attempted yet by a charity. There would be thousands of us.

 

Pertinent and timely. Those issues indeed are effectively more important than ever with COVID, as they directly concern future harms that are already known and will be forced onto, coercively and dishonestly, to this unsuspecting patient population despite decades of well-documented harm.

One of the more important points is the doubling nature of the harm, that those who are effectively made more disabled by this "treatment" will effectively be denied any adequate medical care specific to that deterioration. Not only will those being subjected to this flawed ideology be harmed directly, they will effectively be abandoned by the very health care services that willfully harmed them, likely marked down somewhere as having been non-compliant or some other cruel and morally bankrupt nonsense.

It's easy to despair over how daunting this will be, and it is for now, but just the same as with the AIDS crisis, what seemed impossible for a time was eventually unstoppable. We currently have no recourse by way of having successfully been maligned as mentally ill, therefore negating our very humanity, our right to testify to our life experience and to have agency. We are effectively second-class citizens, about as sub-human as the poor people who were sentenced to the torture facilities of insane asylums, back when they were also filled with the physically sick, only for their minds to also be tortured.

But one day this will change and preparing for it will make a huge difference. Preparing long in advance of this, especially in carefully documenting everything as it happens contemporaneously, will have significantly more weight than future testimony based on recall. Making it very clear to the institutions that their avoidance of the basic facts will itself be used in litigation will be important, to show they knew and simply chose to be derelict in their duty, in not only cherry-picking things in support of what is clearly nothing more than an ideology, but especially of burying evidence that contradicts it, not by accident but with intent and knowledge of the consequences.

I personally view the dismissal of "vexatious" as being overly prepared for future litigation. There will be massive litigation in the future, it is necessary. It is also not mutually exclusive with working with those who are both willing and able to actually solve this puzzle. We have been wronged, massively and willfully, and the anger is justified. It is a matter of basic survival.

 

I did notice this firm:

https://www.frankelnewfield.com/Res...epresented/Chronic-Fatigue-Syndrome-CFS.shtml

 

@Valerie Eliot Smith Have you thought about contacting the UK Competition and Markets Authority about potential monopolistic practices of one ‘school’, including dominant position in media reporting. Do PM me to explore. Have reason to think it might be an option.

 

Thank you for your suggestion, Ruth. The CMA is not an appropriate body to approach on this as it is concerned with competition in business matters rather than quality of service provision.

The CMA is a public body so its functions are not relevant to a private law action such as I described in my post. However, it might be of use in a different context as healthcare providers are included in its remit.

 

Yes, I was thinking of the appropriateness of a referral for investigation rather than a class action. Also greater powers for Competition Authorities to conduct their own investigation. It’s an angle worth pursuing given the relatively few people dominating research, ‘treatment’ and media.

I have contacts who could purse, but alas, not the energy.

 

Reposted:
Trial By Error: Valerie Eliot Smith on COIVD-19, ME and Legal Repercussions

Valerie routinely posts her sharp commentary about legal issues and ME at her blog, Law and Health. Earlier this week, she posted a blog about the impact of the pandemic on the current guideline review that the National Institute for Health and Care Excellence (NICE) is conducting, as well as what that might mean for patients and the possibility of litigation.

 

Just been re-reading the therapist manual for GETSET and there is this:

https://www.qmul.ac.uk/wolfson/medi.../GETSET-therapists-manual-with-appendices.pdf

So they acknowledge they know about the reported harms of GET, but dismiss them due to their own beliefs.
And how does 'safe telephone support' work(?).
As for 'minimising the chance of adverse effects'........isn't that just another roundabout admission that harm happens

 

And who believes it? Those are weasel words.

 

I wonder if the people hired to deliver this therapy know that when all this is exposed as nonsense it is them who will be thrown under the bus to save the people who designed this whole mess.

It will have failed if not due to the patient themselves then to the person delivering the therapy incorrectly. The BPS creators are like cockroaches in this scenario, they'll flee the fire and save themselves.

 

Haven't read the PACE trial paper on adverse events, so just drop the link in case it's useful for this thread:

Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome.
Dougall D, Johnson A, Goldsmith K, Sharpe M, Angus B, Chalder T, White P.
J Psychosom Res. 2014;77(1):20-6, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4065570/

(Couldn't find a thread discussing the paper and can't remember how forum members addressed it in their papers, but they did... )

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4065570/citedby/

 

I don't think PACE in any way registered that progressive deterioration in a patient's condition might be attributable to the treatment itself, and so their definition of adverse events would have completely excluded this I think. Instead such deterioration would, I suspect, have been attributed to the patient's stubborn resistance to relinquishing their unhelpful false illness beliefs and so not trying hard enough ... the patient's fault basically. But I may be wrong.