Its lawsuit time . . .

[Levi]

Tired of having your personality and sanity disparaged and called into question by the psych lobby/CBT/GET/advocates? Tired of bad science that states opinions about CFS/ME patients as though they were facts, without adequate documentation or support? Tired of having your relationship with your M.D. and health insurer interfered with? Tired of being labeled with a functional personality disorder, when in fact you are suffering from an organic disease?

The scientific hell-hole I have described above is actionable in law. The individuals and organizations that foment them by publishing trash science can be sued for damages under a number of suitable legal theories. Folks have been suing for disparagement since somebody in old England ages ago said a competitor's beer tasted like horse urine.

We never do sue because we are too tired, and don't have any spare money to spend on legal defense teams, etc. But, there are a lot of us. I do mean a lot of us. We have them outnumbered. Even ants can become a force in adequate numbers.

PR could set up a meter on the site, with an initial legal team goal, say $250,000 or so. Payments via paypal could go directly into a CPA managed fund and we could watch the meter rise over time. Every time I read another infuriating article, I will go sell a some exercise equipment on Craigslist that I no longer use, and donate the proceeds to the War Fund. When it gets to a certain point, the trigger will be pulled, and someone gets sued for publishing junk that hurts CFS/ME patients.

We are in a civilized world. When attacked and seriously provoked, we take it to court instead of finding other more drastic ways of retaliating. If nothing else, it would rob these psych weasels of that veneer of objectivity they try to project in the name of science. It is hard to sound unbiased and objective when you are complaining: " Those crazy !%$!!* actually sued me!"

Cort could put up a sticky poll and publications/authors could be voted on as potential targets for legal action. Maybe this would have a "chilling effect" on the wholesale raft of CFS/ME psych studies we are dealing with. This would take these venomous tomes out of peer review, and into the courtroom, where they most likely belong.

Alternatively, if it has not yet gotten to that point of frustration, we could give up, just keep the status quo and continue emailing agencies and folks that we think may be able to help us . . .

 

[Mya Symons]

Cort could put up a sticky poll and publications/authors could be voted on as potential targets for legal action. Maybe this would have a "chilling effect" on the wholesale raft of CFS/ME psych studies we are dealing with. This would take these venomous tomes out of peer review, and into the courtroom, where they most likely belong

I would love to donate some money to help fund a class action libel suit against the CDC. What were we called in their latest psycho aricle? I believe it was paranoid, schizoid, avoidant, obsessive-compulsive, depressive and maladjusted. (from Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based StudyUrs M. Natera, b, James F. Jonesa, Jin-Mann S. Lina, Elizabeth Maloneya, William C. Reevesa, Christine Heimb)

A person must prove two things in a libel suit: First, that they or their reputation was harmed in some way by what was written about them, and; second, that what was written about them was not true. I think most of us could prove that we have been harmed by what the CDC has written about us just by what they chose to call this disease--Chronic Fatigue Syndrome. They could look at any of our medical charts and see that it took most of us several years to get a diagnosis and many of us had to change doctors several times before getting that diagnosis because of the negative "stigma" attached to this disease. Heck, they could ask any person off the street what they thought of people who have Chronic Fatigue Syndrome and because of what has been written that person would probably say it is not a real disease and we are faking illness because we are lazy or "maladjusted" people who want attention. Further, any of us who have tested positive for XMRV would have proof that our disease was not caused by a psychological disorder, and; therefore, anything written previously about CFS/ME being a psychological disorder would be untrue. Finally, we could claim punitive damages for the CDC's irresponsibility in handling "CFS". For example, the years they could have been looking for a physiological cause for this disease (such as following up on the retro virus that was found 20 years ago), but refused to do so. The smoking gun in this case, I think, would be the CDC's deliberate misappropriation of research monies that were meant for CFS, but were funneled to different departments. I believe the only forseeable problem would be that government agencies have immunities to prosecution that individuals do not. That, however, would just be a case of finding the right lawyer--someone who has dealt with sueing a government agency before.

I think Levi is right. It is time for us to make a stand and this might be the way we should do it.

I forgot to mention the fact that if the CDC had investigated the psyiological connection to CFS then perhaps drug companies would have invested in the proper medicines and we would have the proper meds and treatments available to us currently without years of suffering. I think this definately would be considered harm done based on written words.

 

[taniaaust1]

I'd be in this too.. Ive been really harmed by all the crap the CDC has put out even thou im in Australia. Some doctors over here actually look at the CDC site when it comes to CFS (ive had one of my own doctors do that).. and people read the comments the CDC do, their studies and other stuff. Ive been highly traumatised and developed mental health issues due to how ive been treated due to CFS/ME.. I developed borderline personality disorder due to all the lack of validation and being treated like im a lier at times as i have an illness no one really believes. Ive also lost friends due to it (cause they dont believe Im really physically ill.. cause of the CDC crap about GET etc). Ive had my life destroyed due to the stuff the CDC has got out.

I personally think a WORLD class legal again against the CDC would be truely a good idea.. the CDC has affected how the whole world is about this illness. All we need is some good lawyers and i think we may be able to start a HUGE legal suit involving everyone about the world with this who has suffered due to the CDC.. once this started to get going.. i think more and more with CFS/ME would join.

The fact the CDC has no page on ME at their site.. I think could be used to prove, they havent done much at all to help anyone get properly diagnosed... and it should be able to be proven that they have caused world wide confusion on CFS.

If this is arranged.. let me know where i can send money from Australia to go towards some kind of class action against the CDC. If we all put in what we spend in one or two weeks on meds (for myself, that is as much as what i spend renting a house!!).. we could get a good law suit started (and from there as it's publicized.. more would join).

 

[Greggory Blundell]

Count me in!

 

[Frickly]

ME too........

 

[Frank]

i will financially support it

 

[Rafael]

Its tough to decide if a spare $ should best be sent to CFS research or to a lawsuite.
But count me in (as long as we get enough people so each share is reasonable).
Ideas: maybe first consult could look for lowest hanging fruit (most likely to win/scare for least $$) - maybe there's some well documented cases where specific patients have clearly been harmed but don't have energy, support or $$ to sue.
I'm imagining such suite(s) against specific doctors, a few medical boards, and the CDC.
Maybe such examples could be lightning rod for gathering donations from people with or without M.E. NOT on this board or internet
Maybe there's a lawyer willing to work for % of winnings if it had a decent chance.
Regardless, no matter what , count on my support. I have been harmed. Great idea.

 

[paddygirl]

Redress

The harm goes way beyond what our friends family and society as a whole think of us.

I have continued to work while going steadily downhill, spending most of my days after work (and days off) in bed medicated looking for relief. My life is in chaos.

If research had advanced as it has in other chronic conditions, we may all have been kinder to ourselves. I know, for example, if I had been told I had MS ten years ago I would have changed my life accordingly and perhaps stayed stable. Instead I have pushed myself through all the barriers, ignoring my misery, partly through ignorance and partly through necessity.

Sign me up. Civil rights lawyers? There must be precedents.

Paddy

 

[Impish]

My understanding is that if the case is strong enough law firms will tackle this on contingency.

Where this site might be able to help is to coordinate people a "class" which first requires a representative patient.

An obvious first target for this is insurance companies that refused to pay out on long term disability payments. If XMRV is the cause, it sounds like there will be some sort of biomarker (ie. the virus) that will be able to be tested for in 6 months or less. At that time we can rally people country by country and help them get the money they have been denied.

 

[Levi]

Concrete steps . . .

Its hard to lay out a battle plan. Dealing with sick patients is a bit like herding cats. But I would envision something like this:

1) Put up an initial sticky poll on PR to collect pledges for $10 Paypal donations. Get some idea of how much $$$ would be there to start a War Committee. I will put one up. If there is interest, maybe Cort can make it a sticky.

2) I do not want to handle other people's money, and I no longer practice law. So we should contact the CAA or other CFS/ME organizations and see if they want to take this on. If they will not, we will have to find a law firm that will directly represent CFS/ME patients as a class, and select a few members among us to represent the class. Ideally, patients with good medical documentation and convincing lab work.

3) The first money should be spent on a general legal brief/memorandum of understanding by this law firm laying out the various causes of action, possible parties to action, and proposed legal remedies available to an organized group of CFS patients. It should also indicate the necessary funding that will be needed to to go to work on this cause. That can be published here on PR, and be used as a "shot across the bow" to put trash psych researchers on notice, letting them know what is in store for them unless they cease and desist doing wrongfully injurious publications. The initial memorandum should be relatively inexpensive, as far as lawyer fees go.

4) Lawyers as a rule are crafty and inventive, and if nothing else, it would be interesting to see what they can come up with for us. The CDC and psych lobbies are laughing at ME/CFS patients, feeling in complete control and enjoying the impotence and vulnerability that is constantly being exploited in these patients. Enough is enough.

 

[Tammie]

In general I hate lawsuits; however, in this case not only have so many been harmed and continue to be harmed, but I think it is going to take somethng like this to get the CDC to butt out....and something like this could alos help spread more awareness, and that in turn would help with how we are treated as people and as pateints, and it could also help with generating further research

so I am definitely in

 

[Levi]

CDC Sued . . .

http://www.cnn.com/2009/CRIME/04/30/tb.lawsuit/index.html
http://www.lawyersandsettlements.com/features/civil-human-rights-law-3.html
http://www.gpb.org/news/2009/11/24/lawsuit-vs-cdc-dismissed
http://www.ajc.com/health/judge-dismisses-andrew-speaker-211263.html

 

[Mya Symons]

"My understanding is that if the case is strong enough law firms will tackle this on contingency."

I used to be a legal assistance/paralegal years ago. I have forgotten much of it, but, as far as I know, lawyers can only take on personal injury cases on contingency. However, I bet that what they have done to us would be considered both personal injury and libel and slander. I am pretty sure a good lawyer could think of other charges that fit also. I would think the patients who became sick in one of the original outbreaks that the CDC ignored as "hysterical" and then labled with a psychological disease would be the best group to sue. However, if the others who are XMRV positive could prove that the virus spread from one of those outbreaks, I think they would be good canidates for the lawsuit also. The big questions on whether or not a lawyer would take on the case would be--1. Does he or she think they can get past government immunity? and 2. Is there sufficient evidence to indicate XMRV does cause the disease orignally called CFS/ME?

PS We should definately hang on to the CDC's original definition of CFS/ME, before it was recently changed.

 

[taniaaust1]

Its tough to decide if a spare $ should best be sent to CFS research or to a lawsuite.

If we could make the CDC stop their bull.. we would end up getiting more researches willing to research CFS/ME ... so in a way this all would help research.

 

[eric_s]

For 10 $, of course i'm in it, too (also for more).
I don't know about american law, the basics are the same more or less all over the world, but the details differ a bit.
I don't know the correct terms in english, but i guess it will be clear enough for people to understand.
Anyway, these are my thoughts..



Basically, i see 3 directions (there are not more anyway, hahaha).


1) Civil law

a) Lawsuits for damages

I see possible material damages, like loss of income, health costs, etc.
Also immaterial damages, like the suffering caused by the disease and the suffering caused by misinterpretation of the disease.

b) Lawsuits to claim benefits from insurance companies, maybe employers etc.


2) Public law

a) Lawsuits for damages (again material and immaterial, as above) caused in individuals by government officials

b) Lawsuits to claim benefits

c) Disciplinary procedures inside the government against goverment officials

d) Procedures against doctors for breaking professional law


3) Criminal law

a) Criminal proceedings against individuals in governments, doctors etc.

Offenses that come to mind are mayhem, in some cases maybe even homicide, defamation, libel, slander, etc., there might be others



The biggest hurdles i see, are those

- Limitation

The claims according to civil law will probably be statute-barred (term?) after around 3 years, the criminal prosecution after around 5 years, except for homicide.

-Intent, respectively negligence

To have a valid claim for damages, to get someone convicted according to criminal law and maybe also for some of the other listed possibilities, there needs to be intent, respectively at least negligence in the person that has caused the damage, perpetrated the offense, etc.
I fear this will be a hard one in many cases (not impossible though), since even at this point, the cause of CFS is not proven yet. And if you go back in time, it was even more uncertain then.
Even if the CDC, for example, were wrong when they made a statement, it was probably in most cases based on a peer reviewed study. So even if it's wrong, you will probably not be able to prove negligence, much less intent.
The same applies for actions by doctors, to some degree. But there i see more chances.

Those are my thoughts. They may not be complete, i'm not really feeling well and just quickly typed this down. Before starting something you would have to consult someone with more knowledge and experience, of course.

As far as i'm concerned, i will probably focus my energy on trying to get more research, rather than having people held responsible, but i'm certainly willing to pay my share in something like this.
If people were a bit more scared of us and would know that you don't f with us that would be a good thing.

 

[Enid]

Quite agree but where to begin - the local small hospital who foisted a Psycho on me in A and E following complete collapse (with everyone 's awful stories). Or back to the beginning years ago when the Psychos hijacked the illness with their mumbo jumbo and attempted to oust real medicine.

 

[eric_s]

Some more thoughts about this.. i realize i went a bit further than your original idea, Levi (only suing for damages in case of publishing of studies etc.), and i don't want to try to hijack this. So tell me, if my ideas are not what you want.

What would be the most important thing? That there is sufficient money. It should feel like a club that is up in the air, ready to come down, so people with not so good intentions towards us (or one of us) will think twice.
Of course, we should also not push it too far, in order not to scare researchers with honest intentions or doctors who want to try experimental treatments.

How do we get enough money? There has to be a sufficient number of people donating. People will have to trust this, else they don't give. So it will have to be organized in a good fashion.
If an organization like the CAA can do this, fine.
Else, some new legal entity would have to be created, a foundation, association, whatever. It would have to be transparent, it would have to be clear what the money someone donates is used for and it would have to be organized in such a way, that there is control, so that it can't be "hijacked" by a single person.

Then people who feel that there was something that's not right could write, call etc. In cases that look worth it, action could be taken, which means a lawyer would be contracted.
Once there is no more need for this, if that ever is the case, it could be liquidated and the funds could be donated to a charity that funds research.

What i imagine is some sort of "Foundation for the legal protection of people with CFS".

 

[Levi]

E-mails sent today

To:

http://www.cfids.org
http://www.afme.org.uk
http://www.pandoranet.info
http://www.iacfsme.org
http://www.meresearch.org.uk

Greetings,

An informal small group of patients on the PR website are interested in forming a CFS/ME legal defense fund. Donations to the fund will be made online via Paypal. The point of the legal defense fund will be to bring legal action against authors and publishers of bad science research on the subject of ME/CFS; expressly those that seek to tie the CFS/ME diagnosis to psychiatric causes or personality disorders without valid scientific support. Such publications are deemed to be an abuse of the scientific process and a violation of human rights.

It will be necessary to find a non-profit organization to collect and hold the funds for us until they can be employed for intended use. We currently have pledges in excess of $200, based on a single day of fundraising efforts, so funds are likely to accumulate slowly. In the event we fail to accumulate sufficient funds and/or secure the representation of a suitable law firm to respresent us within a one year period, you will be directed to cancel this program and transfer these funds to your own general fund to to be used in accordance with your own stated mission, or if you so choose, donate them to research.

If you agree to help with this, reponsibilities will include modifying your website to accept restricted/earmarked donations for a legal defense fund, and installation/maintenance of a site donation meter to track donations. We will request for the administrator of PR to mirror the donation meter on his website and hope he does this. It could provide solace for frustrated CFS/ME patients the world over. Thanks for your attention to this matter.

 

[Seattle Sue]

I've been talking a lot lately about a class action suit against the CDC.
I'm sure there are plenty of lawyers who would take it up on a percentage of the winnings. A percentage of it could also go towards research.
I think the damages we should ask for should start with the money we would have made if we had of been able to continue working our previous employments. If the CDC had of done it's job and found the cause to start with, we would have had treatment by the time I got sick at the end of 1992 and I never would have missed more than a couple of weeks of work. Start with all of the money we would have made over the years we've been sick. Then move on to compensation for pain and suffering.
Count me in.
S

 

[Ever Hopeful]

Count me in, too! Selling exercise equipment I can now only dream of using sounds like a great way to raise some extra cash for the cause !!

EH