Redress for financial and social harms

We have all been very abused and persecuted by governments, the medical establishment, the insurance industry and others.

We, like other unjustly mistreated communities deserve redress. This will never make us whole, but will go some way in that process.

People's lives, their family's lives have been torn apart by misleading, and misguided authorites. We have little if any opportunity to lodge complaints that are effectively acted on, and there may be negative repercussions.

PwME are: impoverished, fearful of additional financial loss, live in fear of health care practitioners, uncaring remarks from "friends", and relatives, have to cope with no effective treatments, isolation, disbelief, stigma, uncontrollable symptoms, unrealistic expectations from others, and the list goes on.

What do you think about redress? Isn't it time to look into this? And, not decades from now. Governments like to wait until the people who are wronged are all dead. If we wait for an acceptable biomarker, and get everyone put through that testing, it will be many years from now. We have tests now that show organic issues. Why are we waiting?

 

Good luck with that.

 

Of course, this isn't a project for one person, or even a few people, but could be an international effort for redress, coordinated by one segment of the ME community, with input and assistance from many. How to proceed, how this would be formed are questions many need to answer.

On the other hand, as you may see it, Wonko, there might be no compensation, and no apology.

However, the process itself may push change to happen. Change, and indeed compensation has happened for other groups. Not all groups, and not what everyone wants, but certainly some change, and progress.

One thing that concerns me is, are we spinning on the biomarker gerbil wheel? Professor Malcolm Hooper said we already have biomarkers. There are tests that prove ME is physiological, and debilitating. Over, and over, government health authorities say there are no tests that show any abnormalities. That's BS! But most people believe this. We have tests that show abnormalities. But, the powers that be ignore these. Like the tobacco industry, when governments were trying to prove tobacco caused cancer, the BPS movement, governments etc. keep raising the bar, or ignoring research that finds new physiological abnormalities. They keep raising the bar for proof.

I have the greatest respect for all the brilliant, and very dedicated caring scientists who are helping us. They are working very hard to find more definitive biomarkers, and that is wonderful. But, we already have proof in the form of clinical testing that ME is a serious physical disease. But, we continue to be held hostage by governments who willfuly ignore what has been known for decades.

 

It would be nice if we could go to court and get PACE withdrawn and the PACErs under a gag order to stop spreading lies and violating their oath.
But at this point such a court case would need a lot of luck to succeed. Not because we don't have evidence but because judges are human. They would see "respected" doctors vs patients with loads of circumstantial data. If we get someone who is technically minded and interested in understanding the nuances of medical science instead of smooth talking liars we could win. But thats gambling.
Once we have a disease mechanism or treatment it changes the game. If we then go to court hindsight boosts our case immensely. We would have the same data plus proof we were right all along. Then all the malfeasance we show has a context that would make us look right and the "respected" liars look terrible. Thats why i think we need one or both before we go after them in the legal realm.

All that said its certainly possible another watershed moment will make all the difference, if a patient sued a doctor for maltreatment and won or there was media waking up and going after the shyster doctors then things could happen that way.

 

This is the point that comes up repeatedly ... we have lots of biomarkers, we lack diagnostic biomarkers, though there might be about nine diagnostic tests in development now. Next year could be interesting.

 

Thanks, alex3619.

Very poor practice, to say the least, not using the biomarkers we have.

Next year country; ME fits into this. Thirty-four years next year for me with ME. Would be super to see major advances soon!

 

As long as they had guidelines to hide behind, it’s “standard practice” and no individual is liable, so far as I understand.

However, I would guess it should be theoretically possible to show misfeasance from medical journals and guideline makers. Or possibly nonfeasance from health authorities.

Also with the changing guidelines and changing accepted practice, it will no longer be possible for individual doctors, clinics, and so on to plead that they’re just doing standard practice.

If I understand correctly. I am not a lawyer. I could easily have something wrong.

Tom Hennessey had thought it was possible to sue someone for something, a while back. I didn’t have all the details.

 

My understanding is that to sue for harms you have to be able to objectively prove harm, prove its caused by the doctors action, and prove that its not standard medical practice. There is an exception clause to this last, at least in some jurisdictions, that standard medical practice cannot be absurd or have other substantive flaws ... there are technical criteria that go with this but I forget what they are.

I am interested in two things -

1. To what extend does diagnosis switching and ignoring existing patient evidence come into play? Ignoring a diagnosis of ME, then forcing a patient to exercise, might not be defensible under the standard medical practice excuse.

2. To what extent is this kind of action criminal, rather than subject to civil suit? If a doctor deliberately puts a patient under treatment for which there are existing medical cautions, including prior failures of such treatment, and this results in harm, could this be criminal negligence?

While the state tends to ignore medical issues if a medical review panel supports the treatment, I would prefer that state authorities pursued dangerous medical treatment under criminal law rather than we sue them under civil. Its not like they could ever pay us enough to compensate us for the harm they have done.

PS In civil court it is sufficient for proof to show that it is more likely than not that something is the case, but for criminal prosecution the burden is higher.

 

Other consideration: who is paying the lawyer fees?

In other words, how much justice can you afford?

These institutions will not be advised by their lawyers to acquiesce quickly - any smart lawyer will delay, add countless motions, any strategy to increase the (financial, emotional) burden on the complainant.

Given this reality, a class action law suit vastly increases the potential settlement amount - a strong motivator for the lawyer / firm to take the case on a contingency basis - and no individual is on the hook for legal fees. But the lawyer has to believe it is a winnable action to take the risk of not being paid until - and unless - a settlement is reached - and this will take years.

So if a class action law suit is the vehicle, what is the legal path? On what (potentially winnable) legal basis is the action based?

 

Whilst some acknowledgement and reparation would be nice, and just IMO, this isn't going to happen until we have a concrete case that both we have a primarily non psychiatric condition and that the people involved had reasonable grounds for knowing this (e.g. they are psychologists/psychiatrists/healthcare professionals specialising in ME who claim to be experts, as such they should know the bleeding obvious about PwME) i.e. they deliberately acted to harm us knowing full well that their "treatments" would do harm.

It would be nice, at that point, if all the purveyors of the bovine excrement we have been, and continue to be, subjected to could be reclassified as cattle, the normal and only authorized producer of bovine excrement, and then treated accordingly.

Obviously no one should be forced to consume the result, as we have been.

But I'm not even going to suggest it, as I know it wouldn't happen, and being sectioned, or otherwise detained, is so inconvenient.

 

If you lose you may be forced to pay the defendent's fees, and if they hired expensive lawyers this can be a very large amount.

 

I don't know where you live Dokagirl but the question of justice and redress has been looked at in the UK for a long time. Lawyers have been spoken to and avenues explored. Around 5-7 years ago I did a small personal project of contacting by letter, email or the phone Human Rights lawyers in the UK and some of the bigger firms.

None of them had any interest in starting a UK class action or a human rights type case. We did have some very good exchanges on why this was and the legal position. Nothing has changed that I can see. There are always lawyers here if one has the funds to get a legal position produced. This would take thousands, in my experience with no guarantee that it would go any further and it would most likely be negative.

The challenge to the NICE guideline which went to the High Court was incredibly hard on all the patients involved, plus it failed.

It's hard enough, as I found, to have a successful personal injury claim or any sort of medical negligence claim with ME involved. One of the main obstacles is the lack of expert witnesses here in the UK willing to act. The UK courts have no interest in experts from abroad.

It may be different in the USA or other countries of course.

 

I think it depends on the jurisdiction - some have funds set up to pay the classes' legal fees in case of a lose - this is to ensure that class actions are accessible / lessen barriers.

 

If this is so then the first cases should be in those jurisdictions. With some wins then other cases will be much stronger in other jurisdictions, and the warning will be out to psychobabblers to change course.

 

It will happen in the future. We're just too early to have standing in court. I tried to get that going a few months back but we don't have the capacity to have an effect. Most, as I, are barely holding on as it is. I thought it worthwhile to get it started just so things are on record, but I can't do this myself and know nothing about the law.

In Canada proper and informed health care is a constitutional right. Ours is unquestionably being denied. This is true in every country that defines it as an unalienable right. But all of this is down to interpretation of what is appropriate for our condition, with the current belief being "it's not even a real disease, do nothing and tell them to exercise". This is what has to break before we can get anything done. AIDS patients are still continuing this fight decades after the crisis.

It won't happen quickly, but it will be spectacular and necessary. Not just for us. For everyone who lives a similar nightmare with a complex chronic condition. For all of those with ME who may never even hear about it if there's a cure unless there is a widespread effort to communicate that this was a massive scandal that needs to be righted.

 

Who wouldn't like to see some redress?

However....

In the current situation, until we have a diagnostic biomarker, we are low on actual proof. There are too many slippery gas - what precisely is ME, does this person actually have it, does the BPS treatment cause harm and can we prove or quantify that harm, so on and so forth.

Who would be stung for the costs and fine? If it was the government, or a public body such as the health service then the danger is you are giving the people with the power and authority to intervene on our behalf a jolly good reason not to. Going after them may cause some with power to try extra hard to maintain the status quo.

As @alex3619 says, no amount of money will ever compensate for 20 lost years in my case.

As it stands, I would rather not take this tack, but would prefer a firm commitment for biomed research resources for research along with decent education materials for doctors, social services, benefits agencies & everyone else who comes into contact with pwME.

Edited - circumstances and the political landscape may well be very different in other countries.

 

Speaking purely for myself, if it was offered, I would accept £6.3 Trillion, as reparation, as long as everyone else was offered the same amount, in their local currency.

I would donate at least 92% towards research split into 3 main areas, what exactly causes, and how can we reliably diagnose and treat/cure ME, what causes BPS people to be so dreadful, and how can we treat this, and finally, how can we cure politicians, of being politicians.

I'd also like some of those shoes that do the walking for you, and somewhere to go, that was 'nice'.

 

Thank you very much to everyone who has commented. A few points to summarize (I may have missed some):

1) overall, the timing is not now/not yet 2) maybe never 3) a civil action is easier than a criminal action 4) class action law suit may have better traction 5) countries where universal health care/best practice treatment is instilled in the constitution may have better luck; it might be better to start with those countries first 6) let's just move on once we get a diagnostic biomarker - no redress 7) people have already investigated this and were worse off health-wise after 8) some seem to feel there is hope for redress somewhere down the road, and some seem to say it will never happen 9) legal costs, who pays, who loses?

I know other stigmatized, oppressed groups such as First Nations Peoples have waited lifetimes for compensation. And, people whose mothers took the drug thalidomide are still waiting for completion of their compensation. And, there are millions, and probably billions of others if we look back in history. We might wait forever. Sometimes the only way for the powers that be to learn and change, or at least cease and desist is to be forced by the courts.

The only way patients in Canada have been able to see their medical files was because of a Supreme Court case won in about 1990.

We have seen what resistance there has been to the IOM/NAM 2015 report, and any changes since then.

Health care change moves very slowly, and sometimes very cruelly. So do governments.


Thanks again to all. And, thank you, Wonko, for your humour. I wonder if under Science for ME, we could have a humour thread?

Yonks ago I saw a cartoon showing a little unhappy guy who said "My life is shit" with a caption that said something like before antidepressants. And, then another picture of him smiling, and the second caption said after antidepressants, but he was still saying "My life is shit". Love that cartoon!

 

https://www.ohchr.org/en/professionalinterest/pages/remedyandreparation.aspx