Poll: Legal Defense Fund would you make a $10 donation to Paypal

[Levi]

For a CFS/ME legal War Chest to be used to sue authors and publishers of psych based pseudo-science concerning CFS. If you can suggest a suitable law firm to do this, post it here.

To CAA or other CFS/ME non-profit organisations; will you take these donations, be accountable for them, and use them for this expressly earmarked purpose? If so, post a statement to this effect here and we will proceed.

 

[eric_s]

If it really turns out as we hope, i personally feel they will be looking studpid enough, that should be enough punishment. Except for some "special friends" of us, i mean people who throw kids into swimming pools etc.
But i guess it will be very hard to do anything about what happened in the past, since at that time it was not clear that those people where wrong. At least in many cases probably. And think about limitation (don't know if that's the right term), much of this is probably already too way back.
But don't take my word, it's just a quick answer.

 

[muffin]

Not just fighting articles, etc. but also maybe a class action

We do really need to find out about bringing some sort of class action or suit against individuals in the government (Reeves, etc).

If anyone knows a lawyer who deals in class actions and would be willing to listen to us, please post. It can be done. Just have to be smart about how we go about it - actually the lawyer has to be smart about it.

 

[Stone]

Why not? What do we have to loose? Our credibility? It's obvious they're doing this on purpose. They are scientists ignoring real science and deliberately publishing 'studies' that are skewed to make it look like we're a bunch of lunatics. If that's not deliberate maliciousness then what is? What could be more negligent than that? Their latest rag, reports that people with CFS have a higher incidence of personality disorders than normal people, but they fail to disclose that these statistics are the same for most anyone with a chronic horrible illness. It wouldn't be hard at all to find expert witnesses, and I think many real scientists have had it with the CDC. Hillary Johnson is talking "hate crime" in her blog. If it does nothing else, it would bring our story out, even if we loose, which we just might, we would still win in some ways. I would like to see someone post some of the negatives because right now I can't be objective enough to see them.

 

[OverTheHills]

I would like to see someone post some of the negatives because right now I can't be objective enough to see them.

I voted for this. But in response to your question, Stone, I think there is a downside.

It is dangerous to have areas of Science off-limits for fear of legal reprisal. Just think how that could be abused by big business with deep legal pockets every time they don't like the conclusions of someone's study. Think Big Pharma and some of their dodgier products.

There was a very protracted libel case in the UK where a fair size organisation (I think it was the British Assoc of Chiropractors) were dragging a single individual freelance Science journalist (Simon Singh) through the courts because he had written something they didn't like. (someone with more energy will have to supply some links).

But as I said, I did vote for this, because I can't think of anything better we can do. I have no science training, but thanks to people on here following up references, the dreadful quality of these papers is obvious even to a layperson.

I think abuse is the right description for what these egomaniac little "researchers" are producing, and I would love to see a way to stop it. Instinctively, I say go for the "journals" not the researchers. It is they who have the power to disseminate this rubbish.

OTH

 

[Tembo]

I voted yes too. Im too tired to fight for anything but Id be more than happy to help moneywise.

 

[Levi]

Paypal Donation Meters

http://www.donationbooster.info/

This is what a donation meter would look like for a legal War Chest. No CFS non-profit orgs want to take this on?

 

[serenity]

i'd throw $10 in the pot, why not.
(i'd prefer it go to research tho.)

 

[xrayspex]

I am interested and would contribute---but am also curious about the comment of caution too

 

[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 the 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.

 

[OverTheHills]

Levi

Despite their name, I have a feeling action for me might be in the UKs pro-CBT/GET camp*. And therefore very unlikely to assist. Does anyone know any more activist UK organisations?

OTH

* and on the other hand I may be completely wrong about that because my brain is made of cream cheese these days. Covering all the bases here.

 

[Levi]

OTH,

Thanks, but I want to ask them all for help here. It does not bother me that my emails may fall into the hands of enemies in the psych lobby, that is actually what is intended. Lets ask them all, and see what sort of response happens from kicking over stones.

If nobody in these advocacy orgs want to touch this, then I know how to form a public non-profit corporation from scratch myself, and I will start one up in order to form a legal defense fund with a CPA managing the $$$, etc. What a pain. 30 years of CFS/ME advocacy organizations, and none of them want to fight for CFS/ME patients and sue the psych lobby back into the stone age.

The psych weasels need to be able to come to PR and watch the donation meter gradually tallying up funds to be used for a legal reply to the flood of trash science publications that are doing untold harm to ME/CFS patients.

Levi

Despite their name, I have a feeling action for me might be in the UKs pro-CBT/GET camp*. And therefore very unlikely to assist. Does anyone know any more activist UK organisations?

OTH

* and on the other hand I may be completely wrong about that because my brain is made of cream cheese these days. Covering all the bases here.

Once we get enough money to retain a competent legal firm, we can start immediately by having them send out "cease and desist" letters to the publishers and authors of our targets. Those letters will then likely be forwarded by annoyed authors/publishers to the legal departments of these target organizations. Accordingly, those legal departments will be forced to research the legal standing of the CFS/ME publications in question. That will result in a scenario of their very own lawyers breathing down their necks and reviewing and approving any future research before they can publish.

We can jam them up. If done correctly we can get a lot of result for relatively very little money. Nothing will happen if we just stand by wringing our hands and moaning about how unfair things are.

Imagine what misery might have been prevented if in 1950, some Tuskgeekee Syphilis Study patients had met on the internet and pooled resources to collectively hire a law firm in order to get help with penicillin treatments for all . . .

 

[OverTheHills]

Good on you Levi, I hoped it was a cunning plan (for all you Baldrick fans out there). And I hope eventually to see some scuttling from the psychs.

OTH

 

[eric_s]

OTH,
If nobody in these advocacy orgs want to touch this, then I know how to form a public non-profit corporation from scratch myself, and I will start one up in order to form a legal defense fund with a CPA managing the $$$, etc.

I read the other thread first and replied there. Now i see you have already said here you're willing to do that, even better.

 

[taniaaust1]

OTH,


If nobody in these advocacy orgs want to touch this, then I know how to form a public non-profit corporation from scratch myself, and I will start one up in order to form a legal defense fund with a CPA managing the $$$, etc. . .

cool.. i only just saw this thread.. i'd been responding to the other.

What a CPA thou?

You'll need to find a study thou where it can be proved to be false or wrong and intentional. That is why i personally think sueing over a study may be hard... umm thou i guess one could sue over some of the comments sometimes made with them based on no fact.

 

[Levi]

Update on legal defense organization efforts

Updating,

No CFS/ME organization contacted has reponded to email for initial assistance request to provide a website fund collection service. Twenty five folks here are unhappy enough with the psych lobby's shenianigans to pledge money in the poll. Not enough to justify a non-profit CFS/ME legal defense org/website etc. yet.

We would need at least 100 pledges to get rolling by my rough estimate. Several folks have voiced concern about backlash and/or unintended consequences. I would only point out that my personal viewpoint is that its better to at least try put to put up some sort of a fight than to (figuratively) let yourself be hauled away collectively to the concentration camp in railroad cars by the evil minions.

So I will table my efforts for now. Cort is welcome to put this poll up as yet another sticky if he feels there is any merit in the concept of a legal defense org. If anyone else here wants to undertake a CFS/ME legal defense org. with such minimal apparent support, please be my guest.

In the meantime, the psych lobby "researchers" may continue to publish away, and depict all CFS/ME patients as deeply disturbed folk with serious personality disorders. Good luck!

 

[dipic]

Do we honestly stand even the slightest chance here? I mean, we're a tiny bunch of ants compared to the looming giant that is the psych lobby. The ridiculously tiny amount of people we have on this forum compared to the number sick with this illness (let alone the ones who even give a damn to take some sort of action, no matter how small or even completely negligible they may seem) would almost be laughable, if it weren't so incredibly tragic.

Even if we had just a QUARTER of the people sick with ME/CFS or similar neuro immune disorders rallying behind this or any other advocacy efforts, I would still seriously doubt our ability to make any sort of impact. At the very best this could make a small bit noise through publicity... but would that sound be audible enough for anything to change or diminish some public apathy?

Sorry if I seem overly negative - and I'm sure this post will be an unpopular one - but that's the way I see things. Feel free to disagree or even simply ignore me and continue on; best of luck (sincerely), in any case.

In the meantime I will continue to donate a portion of my monthly SSI check to the WPI, because honestly, I believe they (and the science in general) is the best shot we've got.

 

[eric_s]

I think it might be hard to win such a case against the authors or publishers of a study (unless there's really a flaw in it somewhere). But that does not mean we should not have a trustworthy and good quality lawyer evaluate the chance for sucess. And there are certainly other cases that could be won more easily.

What you say about the impact we can make is, in my opinion, totally wrong. About as wrong as possible. Our number is so big and our story so incredible (if people believe it) that we could achieve basically anything, if you ask me. We just would have to be able to mobilize all of us. And this can be done. That's the key, i think.

But if the Alter paper is really at press now, then i'd just wait for that and then make my decision what we should do now. Because this might change everything. Good you're supporting the WPI. I'm doing this too, but last month i couldn't. All the best.

 

[taniaaust1]

All up our number is big and to top that off.. we are desperate people. I think if something got started it would grow. Thing is we need to attack the right things, things we stand a hope of winning.

 

[Mya Symons]

All up our number is big and to top that off.. we are desperate people. I think if something got started it would grow. Thing is we need to attack the right things, things we stand a hope of winning.

I don't think we could sue the journals themselves because they probably have some sort of disclaimer written somewhere that states they are not responsible for verifying the content of the studies they publish.

Personally, I think the most damage has been done by the CDC and perhaps they should be the defendants.