How Much Compensation are we Due?

[dsdmom]

I am in the middle of my long term disability appeal. I wonder if the insurance company is aware of the ongoings of XMRV-related research or not and if that will have any impact on their decision. however, it is my guess it won't. The 'doctor' (and I use the term loosely) they used to review my file the first time around was a moron. The best part is that my attorney uncovered a separate lawsuit involving this doctor and another patient because he was such a moron and didn't even review the files. The judgement was for the patient.

 

[Wonko]

IMO in the UK at least compensation whilst possibly due will not happen - as the government/ NHS/ DWP etc were acting in good faith based on the advice of the experts they appointed to give them the advice that would allow then do do whatever they wanted (eg dont like the advice get an expert who gives you the advice you want) they wont be liable

whilst it's theoretically possible to challenge this who has the energy? even for millions? I dont

like most I'd settle for treatment when it's available, support as needed and preferably not being thought of as a lazy malingering scrounger would be nice

 

[justinreilly]

I totally understand the anger but I suppose the way I look at it is maybe I and millions of others have had to suffer in order that those coming behind us don't. Its just how life pans out, for instance what about the men suffering from PTS who were executed in WW1, we know about the illness now, then the powers that be truly believed they were cowards.
I too lost my job, career, friends,social life like many on here, and am a virtual prisoner in my home.
But it makes it all too complicated for my brain to think of compensation, I just want a proper diagnosis and treatment, like you I knew all along I had a virus, but I also believed the docs when they said I had acid reflux etc etc etc etc and trailed down multiple dead ends.
Knowing we will all be spared these stupid stabs at diagnosis from bewildered out of their depth docs will be compensation enough for me. I just hope that for all of us this news will have come in time to save us from this illness making us any worse, and we can have some chance of recovery in the future.

Maryb,

I admire your wish to just go forward and not blame. Even though i am a lawyer I have not looked into the issue of compensation because i am very sick like everyone else and it's just a battle to hang on and try to get better. That said, I have studied this and it is beyond doubt that our government, and the uk govt and the uk psychs have been continually and knowingly waging a well orchestrated war on us. This is not a case of it is complicated so we just didn't know. Morally we deserve a huge amount of compensation. The legal and practical questions of should we sue are less straightforward.

The govt is protected by sovereign immunity but we may be able to get around that with the fed tort claims act. i haven't looked into it so i don't know. These criminals must be brought to justice and i will fight for that, but right now my focus is on advancing the science, understanding and treatment and getting better. i can't do anything at all in life until i get better.

 

[*GG*]

Sorry for your plight, I have only been suffering and still working for 7 years now. I will not hold my breath on compensation.

Let me get my health back to nearly 100% and lets see after that. I think "bad" feelings are detrimental for us.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[justinreilly]

Good points Parismountain, i'm from S.C. also and yes they are a little behind the times. Luckily, I lived in mass. when I got sick in 84 and ended being seen by DR. Gantz (Gantz and Komoroff were diagnosing CFS). Got my diag in 85 and stopped working in 86 and with the help of Dr. Gantz I got soc scrty disability spring of 87 and still have it now. Sued the place I worked for not accomadating me due to my illness, and received a settlement through the Mass.Commission against discrimination. Sometimes you just have to stand up and fight!

Good for you!

Dr. Gantz was my doctor too, when he was here in Boulder. But only for a few months before he stopped work because of his cancer, which as you may know was fatal. he was a very good man and cared about his patients.

 

[justinreilly]

Well let's see there's the fact that in the US ,CFS funds were mishandled which delayed years of research while being spent on other diseases for one. Then let's ruin a female scientist's career when a retrovirus is found and then trying to ruin another's. Then they let these retroviruses rage for another 20 years or so years because a large majority of us are female. I see a civil rights lawsuit coming, but we are talking the government here. Although anything could happen I guess. But how can you really measure having your life ruined and maybe your children's, or your children's children? One thing they didn't count on I quess was the prostate issue going into the equation. Those good ole boys. May be time to get their prostate checked or an XMRV test once it's readily available. Looks like the all in our heads theory may have backfired! How do we measure that fact? Priceless!

what cdc and nih and uk govt have done is morally a civil rights and human rights violation.

don't know enough about it legally, but this might be worth a try too.

one good thing about the threat of litigation is that it gets the malfeasors' attention and this may motivate them to do their jobs and stop abusing us. otherwise, yes, for me getting funding on good studies is far more important to me than getting money or seeing anyone punished.

 

[dannybex]

Never gonna happen...unfortunately...

what cdc and nih and uk govt have done is morally a civil rights and human rights violation.

don't know enough about it legally, but this might be worth a try too.

one good thing about the threat of litigation is that it gets the malfeasors' attention and this may motivate them to do their jobs and stop abusing us. otherwise, yes, for me getting funding on good studies is far more important to me than getting money or seeing anyone punished.

I agree Justin -- and also agree with ggingues point that ""bad" feelings are detrimental for us". The rage and anger is TOTALLY understandable, believe me, we've all lost a huge portion of our lives to this while we've been rejected or at the very least not taken seriously by our doctors, "friends", family...etc. But holding on to that anger and rage I have read can get in the way of healing/recovering...from any illness. That doesn't mean we should forget what's happened, but it might not be best to dwell on it or stress about it now. EASIER said that done, I know...

I also understand Robin's passion on this, but respectfully disagree that 'they let these retroviruses rage for another 20 years or so years because a large majority of us are female'. That point alone would be very difficult to prove, since breast cancer is one of the highest funded diseases in the country. It would also be difficult to prove that any one of us had a retrovirus 10-20-etc years ago, and who knows, it may turn out that some of us (20-30%?) don't have it now, yet are completely disabled anyway.

Having said that, the government absolutely is guilty of mishandling CFS funds, of ignoring thousands of research papers showing physical and immune abnormalities in CFS/ME, etc., etc..

But...as nice as it would be...I don't think we'll ever see a nickle when it comes to compensation.

 

[Recovery Soon]

I agree wholeheartedly that lawsuits are in order- and I'm not dwelling in anger, hostility or negativity.

The fact is I have suffered enormously for nearly 4 years as a seeming result of our Government's failure to adequately fund research into an illness they have refused to take seriously for decades. That's not OK.

Their choice of name undermined this disease to such an extent that I am embarrassed to say out loud what it is that I have- so I don't. I hide my condition, like, well, the plague.

I have suffered a massive amount of physical and emotional distress, which could have been completely avoided had the Government taken seriously it's role in disease control, and not exacerbated the problem by pursuing psychological theories, which served only to blame a disease on the sufferers.

Additionally, I am fortunate to still be working full-time. However, I left an incredibly lucrative career, earning well over $130,000 USD because I could not handle the demands of it. In it's place I have worked at a fraction of that amount in a career more accommodating to my condition. Had I not been sick- I would likely be on my way to earning upwards of 200K had the Government taken these claims seriously in the early 80's when I was a kid. That would have put me on pace to looking at earning much more than that in the next 5 to 10 years. They did not, and so the momentum I had built in my career as an adult is lost forever. And so are those anticipated earnings for the future. I simply cannot get back to where I was even if I am cured tomorrow. Had the Government taken the same tack with HIV- Magic Johnson would be in a grave now- let alone the massive earnings he has accrued over the years. All of this could and should have been sorted out before I ever entered the work force, so this would never have been a consideration of mine. Unfortunately, their negligence has resulted in untold suffering to me and loss of wages.

Additionally the retroviral work of Elaine Defreitas was ignored in the early 90's, which again could have completely prevented my encounter with CFS.

My advice to all those reading and contributing to this thread is to realize that demanding compensation is exactly what we should do after we have been medically sorted out.

In my view if you take the position that all you want to do is get better and let bygones be bygones, then you are selling your suffering, my suffering, and everyone on this board's suffering, very short.

I want a physical victory, a moral victory, and yes, a monetary victor- in exactly that order- however long it takes.

 

[boomer]

Well Harper has just pledged that the Canadian government will give $1.1 billion to women in poor countries for maternity and to their children. It makes me feel so sad that none of that went to the 17 million suffering with cfs.

 

[dannybex]

I agree wholeheartedly that lawsuits are in order- and I'm not dwelling in anger, hostility or negativity.

The fact is I have suffered enormously for nearly 4 years as a seeming result of our Government's failure to adequately fund research into an illness they have refused to take seriously for decades. That's not OK.

Their choice of name undermined this disease to such an extent that I am embarrassed to say out loud what it is that I have- so I don't. I hide my condition, like, well, the plague.

I have suffered a massive amount of physical and emotional distress, which could have been completely avoided had the Government taken seriously it's role in disease control, and not exacerbated the problem by pursuing psychological theories, which served only to blame a disease on the sufferers.

Additionally, I am fortunate to still be working full-time. However, I left an incredibly lucrative career, earning well over $130,000 USD because I could not handle the demands of it. In it's place I have worked at a fraction of that amount in a career more accommodating to my condition. Had I not been sick- I would likely be on my way to earning upwards of 200K had the Government taken these claims seriously in the early 80's when I was a kid. That would have put me on pace to looking at earning much more than that in the next 5 to 10 years. They did not, and so the momentum I had built in my career as an adult is lost forever. And so are those anticipated earnings for the future. I simply cannot get back to where I was even if I am cured tomorrow. Had the Government taken the same tack with HIV- Magic Johnson would be in a grave now- let alone the massive earnings he has accrued over the years. All of this could and should have been sorted out before I ever entered the work force, so this would never have been a consideration of mine. Unfortunately, their negligence has resulted in untold suffering to me and loss of wages.

Additionally the retroviral work of Elaine Defreitas was ignored in the early 90's, which again could have completely prevented my encounter with CFS.

My advice to all those reading and contributing to this thread is to realize that demanding compensation is exactly what we should do after we have been medically sorted out.

In my view if you take the position that all you want to do is get better and let bygones be bygones, then you are selling your suffering, my suffering, and everyone on this board's suffering, very short.

I want a physical victory, a moral victory, and yes, a monetary victor- in exactly that order- however long it takes.

Hi Recovery Soon,

I'm not saying we should forget what happened, and of course there are probably many people that don't dwell on the subject in anger.

Believe me, I want the same as you, and believe ideally we definitely deserve to be compensated...I just don't think it will ever happen.

 

[Recovery Soon]

Dannybex,

Did you think an undiscovered retrovirus would be the likely cause of CFS?

Lots of things can happen we don't anticipate. I wouldn't rule any options out on what appears possible at this point in time.

 

[ukxmrv]

I'd like to see something like a "Truth and Reconciliation" committee set up for this. Then patients could tell their stories and face the people who mistreated them if they wanted to.

Not everyone will want to fight for money. I really want to get my life back, start work again and catch up on things that I have missed. Can see myself walking off into the sunshine. Doesn't mean I wouldn't join a class action though if it looked likely.

I'd still like to see the perpetrators in a court of human rights and be able to face them.

 

[ballard]

Apparently, the Belgian National Health Insurance Institute has won more than half a million euros in a suit against two CFS/ME doctors.

Perhaps we will win compensation for neglect and malpractice after all!!

Does anyone know any more about this article?

http://tinyurl.com/29sg8uf

 

[dannybex]

Dannybex,

Did you think an undiscovered retrovirus would be the likely cause of CFS?

Lots of things can happen we don't anticipate. I wouldn't rule any options out on what appears possible at this point in time.

Hi Recovery Soon,

I have no idea. It certainly seems likely that XMRV may play a huge part -- it may indeed be THE cause for most people w/CFS. But there may be other factors, and because we're all so different, we may require many different types of treatments to recover.

I certainly wouldn't rule out anything either. Even though I've almost given up many times, I keep going (so far anyway) mainly because i know a few people who actually recovered (and 2 were ill for over 16 years, one of whom was bedridden for 2 years), but they each were sick for different reasons/due to different causes/triggers, so their treatments, etc., were completely different. So I know it's possible. Did they have a retrovirus, and did it go into remission? I don't know...

But Dr. Klimas has mentioned patients of hers who have completely recovered as well. A very rare occurrence of course, but it does happen. I wish someone would interview her more in depth about them...but that's another thread, and she's extreeeemely busy! :Retro smile:

 

[serenity]

thank you for posting this Ballard, interesting. i am not usually the "sue 'em," type & would not waste the time & energy if i get well. but, that said, i can see where some compensation for what we have been thu - at least to repay some medical expenses, would be nice.

 

[Tammie]

Apparently, the Belgian National Health Insurance Institute has won more than half a million euros in a suit against two CFS/ME doctors.

Perhaps we will win compensation for neglect and malpractice after all!!

Does anyone know any more about this article?

http://tinyurl.com/29sg8uf

The doctors were sued because they actually tried to treat their patients rather than force them to go for CBT .....this is the exact opposite of a victory

 

[Recovery Soon]

Hi Recovery Soon,

i know a few people who actually recovered (and 2 were ill for over 16 years, one of whom was bedridden for 2 years), but they each were sick for different reasons/due to different causes/triggers, so their treatments, etc., were completely different. So I know it's possible. Did they have a retrovirus, and did it go into remission? I don't know...

But Dr. Klimas has mentioned patients of hers who have completely recovered as well. A very rare occurrence of course, but it does happen. I wish someone would interview her more in depth about them...but that's another thread, and she's extreeeemely busy! :Retro smile:

Hey DannyB,

I'd love to hear more about the recovery stories. I'm on the milder end of the CFS spectrum, which is still unimaginably awful. No exercise, a shadow of a life, and the all the rest (except I can still work).

I want to know if these recoveries were full recoveries (complete return to pre-onset condition)- or just a significant symptom reduction.

That is something I haven't heard of yet.

 

[ballard]

Hi Tammie

Well, I feel pretty stupid. And I just started to post on PR, too. I think I'll go crawl under a rock.

This does seem to be bad news. :worried:

 

[Tammie]

Well, I feel pretty stupid. And I just started to post on PR, too. I think I'll go crawl under a rock.

This does seem to be bad news. :worried:

Oh my gosh, please don't feel stupid.....I actually had to read and re-read the article and then I asked about it, too, because it wasn't real clear (I think the transaltion made it more difficult to understand)