1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Its lawsuit time . . .

Discussion in 'Action Alerts and Advocacy' started by Levi, Aug 2, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,466
    Likes:
    4,223
    Sth Australia
    Levi.. i wouldnt trust any CFS organisation who supports Wesselys views to go holding onto money for this kind of cause. http://www.forums.aboutmecfs.org/sh... Support Groups and Organisations&do=comments Please check that link... many dont trust www.afme.org.uk so they may not be good to get money held for sueing there.

    We really need to know a group everyone trusts isnt on the other side of the fence at all to hold the money and i know some have got issues with the CFIDS Association of America as at times people arent sure what side of the fence they are on. Why arent they doing more pushing.. and having the CDC defining ME and CFS better?

    It would be hard to sue the CDC for their studies as after all they do say they are CFS studies and not ME.. but could it be proved that there is some kind of negative bias and discrimation going on towards M.E. patients due to certain actions of theirs?
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,466
    Likes:
    4,223
    Sth Australia
    another CFS org is http://www.ncf-net.org/about.htm . We really need to find a good lawyer first who will support in all this, this may really take some time and doing, and i arent sure how i feel about the one year thing in that mail, it could take longer to build up monies to do a decent case for something. Can any of the lawyers who battled ones like the CDC in the past or other government health agencies.. take this on? has anyone contacted them? Id like to see any money donated held.. for this cause even if it ended up we didnt go ahead but others did in the future with this goal.. im sure the money would sooner or later become in handy for those with CFS/ME for good legal outcomes for the whole of us all.

    Could a lawyer be contacted and found out the best way to tackle the issue.. what exactly would those with CFS/ME have most hope of a postitive outcome if we tackled it.. If we had a specific thing we were going to fight. i think it has more hope of getting people involved.

    I kind of feel like we are foundering as we havent got a percise target yet.. and we need to have a target.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,466
    Likes:
    4,223
    Sth Australia
    Ive started to go throu those links you put up with the law suits on them.

    http://edition.cnn.com/2009/CRIME/04/30/tb.lawsuit/index.html (about the guy who was a lawyer took on the CDC... does anyone know if he won the case??)

    "Speaker became the object of unwanted public attention, including expressions of public scorn and contempt (including death threats) due to the inaccurate light in the information presented, resulting in so much strain on his marital relationship that he and his new bride parted ways after the wedding but before filing the marriage license," the suit alleges"


    It makes me think of us.. we get "public scorn" and "contempt" due to all the bullcrap the CDC has put out.. in their misrepretation of ME by "ALLOWING" it to be all missed up with CFS. How many of us have lost our relationships due to the information they put out? How many of us have lost our families?

    (i wil research that case further.. i want to know if he won against the CDC).
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,466
    Likes:
    4,223
    Sth Australia
    http://www.ajc.com/health/judge-dismisses-andrew-speaker-211263.html
    ..............

    Is there anyway we maybe can form a new patient organisation to represent us all legally? Whether it be hitting bad publications or CDC or whatever. A quite open one where all CFS/ME patients can vote on precise legal things money can go towards? i know nothing about organisations but im quite willing to be on a patient committee and do anything im able to do towards it's cause. The organisation could have its own paypal account??? (i've no idea how these things work). but could this be the way to go if we end up not being able to find a group which CFS/ME patients would trust to hold funds for legal things??

    (i wish i was smarter and knew more about all this kind of stuff)
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    I totally understand the wish to hit back at some of the stuff that comes out but I wouldn't like to see a patients' organisation whose remit is to look for science it doesn't like and go after it legally. I can't think of a better way to shut down scientific resesarch into ME. Scientists can't control the outcomes of their studies - they can only do their best, and if scientists feared legal action if patients didn't like the results, or even designs of their studies, they'd be put off from entering the field. We need to encourage scientists to investigate our disease, not frighten them off. Even done with the best of intentions, I think this approach could backfire horribly. A legal attack on a study would be seen as a legal attack on scientific freedom.

    I think a legal challenge that would be worth pursuing has to be one that the general public would also see as fair and around issues of incompetence and dishonesty. For example, what about the consequences of the CDC's handling of the Incline Village outbreak - researchers going off skiing after seeing only a few patients and dismissing the entire thing as mass hysteria despite the evidence to the contrary? I think we need to pick something that is obviously, clearly scandalous and go after that. When that case succeeds, it will scare off a lot of wrongdoers and get us huge positive publicity. But we really mustn't turn into the publication police.

    Sorry, bit of a rant there! But it's science that will get us out of this - and it has been other scientists' reluctance or inability to get into our area that has left the field to the CDC for so long. That's changing now and we should support those scientists acting in good faith - they'll be worth a thousand lawyers.

    Let's go for a single, clear, obvious target and win that case!
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,466
    Likes:
    4,223
    Sth Australia
    nods.. that is why im more for trying to hit the CDC for their obviously bias and discrimintion towards ME... studies can weavel way out of court cases by saying they were CFS studies and not ME or whatever.

    That would be a good one.. if others all think it is too.. If the money was available and there was a lawyer to take it on.. maybe that patient group would want to sue? ***wondering if there is any of that patient group here????** It would help bring public attention to us.

    Another one could be when they (was it the CDC??) used the CFS research money for other things entirely.. that event from some time ago which was proven. Did the money get replaced???? Could the CFS patient group sue for that research money back which was allocated for CFS research put then not put into it??? (on top of what they already allocate). Could CFS patients could say that money stolen.. has impacted as all due to less research taking place??? Could we use that to say we've been discriminated against??? and do a discrimination class action? After all.. that WAS discrimination towards us.

    There has been another thread started up in this forum by another.. who's emailed Erin Brockovich to see if she would take up our cause.

    (also would like to say thanks for Levi for starting this thread and working to try to get something happening about it)
  7. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    That's what i was talking about. I know about these things and could do it (not on my own of course, but that would not be a good thing anyway since it should never be one person that holds all the power without sufficient cotrol). The problem is that i don't live in the USA and am not a US citizen (Swiss and Canadian (Quebec)). And i think at least at this point the USA is the center of gravity and the organization would have to be set up there.
    And certainly this will take a lot of time and energy. I would like to focus my time and energy on pushing for research, but nevertheless i think i would be there to participate in doing this, if people want me to. And once it's set up, i could go on to other things and maybe have a less active role there.
  8. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I agree, we would have to be careful there.
    The problem with this, as i've mentioned a couple of times before, is limitation. Anyone correct me, if i'm wrong.

    A claim for damages, according to civil law, will still exist, but not be enforcable anymore after 3 years, over here.
    A criminal offense such as physical injury generally can't be prosecuted anymore after 5 years, where i live.
    In the USA the timeframes might differ slightly but i guess they are more or less the same.

    So everything that happened at Incline Village etc. is out of reach since a long time. Except for political pressure.
    I agree. Nevertheless there were and still are bad things happening and it would be good in some cases if something can be done about it. Also, if successful, it would change the way we are seen. If we lose, on the other hand, the consequences might be negative.

    I think, that if we get validation of the XMRV/CFS association, things will change anyway. There will be no more bs science in CFS and bad treatment by doctors will stop.

    I think it will be very hard to win a case against the author or publisher of what we see as bad science, but who knows. I see difficulties in proving intent or negligence and difficulties in proving the causality of the publishing for the damage suffered, especially in the case of material damage. But let's hear an experienced american lawyer about that.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,466
    Likes:
    4,223
    Sth Australia
    :) eric .. glad to see that you wouldnt mind being involved.

    Couldnt the new org thou be international? As after all it will be supported from about the world and working for a worldwide cause. Money to pay a lawyer could be sent from anywhere even internationally... Or is there a reason why that wouldnt actually work? (i dont care where in the world a fund is started for this.. i just want to see something happening).

    nods yeah.. That is why we need good legal advice to know what is most likely to succede.
  10. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    You're welcome.
    I'd say no, there is no such thing, at least not for our purpose. A legal entity or any sort of organization will have to be set up in a distinct country and will be according to the law of that country. That does of course not mean that this organization is unable to be active in other countries worldwide as well.
    Unless you're an international organization such as the UN or the EU (this one is supranational), you're always "national" in the legal sense. And seeing ourselves as some sort of UN would go a bit far at this point :D

    Donations to the organization can of course come from all over the world and membership (if it's an organization that has members, such as an association) would not by definition have to be restricted to inhabitants or citizens of the country where the organization is based.

    Take soccer as an example. The FIFA is based in Switzerland, it legally is a swiss association but it's members are the national football associations from all over the world and it's active globally.
  11. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    I think this is an excellent idea. I live in the UK and human rights laws exist which are breached when disabled people are publicly denigrated. Some of the coverage of "benefit cheats and scroungers" recently on the BBC has been defamatory of sick and disabled people. We do need to look into our legal protection.
  12. Impish

    Impish Senior Member

    Messages:
    101
    Likes:
    0
    Victoria, BC
    IMHO going after the CDC or other agencies at this point is going to have limited results. Maybe down the road once the science is better. Has anyone here been denied disability payments they were due as a result of the illness? My sister did get some after fighting tooth and nail. I have heard lots of stories of people getting denied. Personally, I thint this would be a better target. First off would be finding out if it is actually a problem...
  13. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    594
    Likes:
    926
    Mercer Island Wa
    Not to put a wet blanket on this but, suing the CDC is like suing yourself. The CDC is funded by taxpayers dollars. Then also you would be up against the psychobabble lobby and the insurance lobby who fund millions of dollars to keep their interests above everyone elses. The court of venue is Georgia and I am sure the Federal Judges have enjoyed all expenses paid nice junkets to the tropics by these groups. This is why let's say for an example you want to sue an insurance company, unbeknownst to most people is a small notation in their contract that any litigation must be tried in a certain jurisdiction. You also notice that most insurance companies are located in that jurisdiction. Why because they own most of the top law firms in that jurisdiction and the judges. Doubt me, read the book or watch the movie Civil Action. Read what happened to attorney Jan Schlichtmann when he took on the 'big' boys and the judges. It's also a good book to know what you have to prove. You have to prove that you have ME/CFS and you are not some psycho case. They will have their investigators tear apart everything in your background. Then, the biggest hurdle is to prove that ME/CFS is caused by a pathogenic agent which to date has not been proven. Even if you succeed, they can drag it out on appeal after appeal with their bottomless pit of funds. I doubt you could find an attorney that would want to take this on. I thought about a class action lawsuit at one time but realize that there are still too many missing pieces to the puzzle

    Your best bet would be if under the freedom of information act or a whistle blower comes forth, you find information that proves certain officials conspired to obfuscate research for financial gain or influence. Not only will you have a criminal case...Watergate but a Federal civil lawsuit against those officials. To me, the best use of any funds would be serve in public relations by attacking their position. Embarrass the heck out of them with their shoddy scientific background and their reliance on the psychobabble group. Hire an investigator who will do the research on the CDC under the FOI, and then take that information to an investigative reporter at the Washington Post. Use the money on, full page ads in the major newspapers with statements by Reeves and Wessely ridiculing this disease and then paste alongside those statements, excerpts from Laura Hillenbrand, Michele Akers or Sophia Mirza. Libel and slander laws would not apply in this case. Just IMHO thoughts...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994528/
  14. gregf

    gregf Senior Member

    Messages:
    134
    Likes:
    32
    Sydney Australia
    Here in Australia, I have a good contact at Australia's top law firm.

    When I was making my insurance claims, they represented me. I put together a lot
    of the supporting evidence myself. My claims were accepted and paid, unchallenged in court.

    I am not in need myself, but I am willing to put up some of the money I won, to seed a legal
    suit for other Australians through my law firm.

    The way I see it, US citizens would sue the CDC and UK citizens would sue the NHS who listened to Wessley. Australian, Canadian, European and NZ citizens could join one or the other or both.

    I think the medical evidence may take another year or two and the law suit could easily take over a decade. But, now is the time to start to prepare for this. Things can happen in parallel.

    I will prepare a pitch to put to my lawyers, but that may take a few more weeks ; with all that's happening with HGRV/XMRV, that is prudent. We don't want to jump the gun.

    I don't see any need for a foundation for donations. That's risky, cumbersome and unnecessary.
    Get a few to do as I am : prepare a good pitch to a good law firm and they will take it on, no win no fee. Then our lawyers can pitch in with your lawyers.

    We should not be saying all our plans publicly either. I know there are pro CDC "CFS" "patients" around.


    One more thing, the name is very important. I believe the CDC's strategy for many years has been to shift the definition of our illness to a null illness, that is, chronic fatigue syndrome, so that they can say "well you guys have ME. We were not talking about that. We were talking about CFS". That is why the WPI keeps saying "in CFS", to pin the CDC.

    However some of us are concerned by this. The same works in reverse against people who have an ME Dx who are left in the cold.

    Also we feel that the correct name is ME and the name shift to CFS could be highlighted as part of the CDC's strategy to discredit us. The pro-MLV researchers should be saying "found in ME/CFS". That leaves no escape for the CDC and allows us to highlight the naming strategy of the CDC, in the court case. I would not be putting up money for a strategy that leaves ME out.

    And that is why I beg people here to say ME in general chat and ME/CFS in legal areas and discoveries, and never just say CFS. I wish I knew how can we get this across ?
  15. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    Excellent post gregf!
  16. kdeneris

    kdeneris

    Messages:
    58
    Likes:
    0
    So many people here have great ideas/insights into what could or should be done in terms of setting up a legal defense fund. I am very much in favor of moving ahead on this project, and intend to look into what I can do to raise seed money in the U.S.

    I think a legal defense fund should initially take representative ME/CFS patients suffering discrimination in employment, disability benefits, educational access, and housing. There is no need to prove causation in these cases, only disability and resulting discrimination. We can provide training seminars on how to manage the disability application process, etc. and we can mount media campaigns to make the injustices ME/CFS patients are suffering more visible. These rather modest goals would serve for our initial charter, and as a way to win the support of individual, small donors.

    As the evidence of retroviral infection mounts, class action suits can be filed. As someone already said, it takes a long time to put that kind of a case together. It's a lot of work. Anyone who hasn't read "A Civil Action," should. Jan Schliectmann is my hero.

    A task of the legal defense fund will be to assemble a legal team who can examine the available evidence and work out various theories under which we could sue as a class. The scientific evidence isn't in place yet, but by the time we finish gathering evidence, it very likely will be.

    I want to start writing the charter, and looking for grant money. A lot of discussion needs to take place among those who want to donate their time to the project. Perhaps we could set up a Yahoo Group for that specific purpose? Please contact me by private message if you have a legal background or a fund-raising background, non-profit setting up background, or otherwise want to help. Our first task will be to set up working groups for the U.S., U.K., Australia, and NZ.
  17. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I don't know anything about law but I think the best basis for a lawsuit is discrimination against a large population of sick people. I wonder what the NIH's mandate is; if it is to serve the sick people of the United States we could sue them for not fulfilling their mandate.

    This would have a strong basis on fact because you could show studies showing 1 million people with CFS, causing 20 billion dollars a year in economic loses and high rates of disability and then the NIH - a 25 billion or so dollar a year agency - spending $3 million dollars on it. That's discrimination in my book....just a different kind than we usually think of.

    Govt agencies agencies are sued all the time for not fulfilling their mandate. The Forest Service for not protecting endangered species, the EPA for not protecting people from the effects of smog.....the NIH for not fulfilling their charge to the sick people in the US.

    It might not even matter if we won; the publicity would be enough hopefully to get what we want.
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Here's the NIH's Mission Statement:

    NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability.
    The goals of the agency are:

    • to foster fundamental creative discoveries, innovative research strategies, and their applications as a basis for ultimately protecting and improving health;
    • to develop, maintain, and renew scientific human and physical resources that will ensure the Nation's capability to prevent disease;
    • to expand the knowledge base in medical and associated sciences in order to enhance the Nation's economic well-being and ensure a continued high return on the public investment in research; and
    • to exemplify and promote the highest level of scientific integrity, public accountability, and social responsibility in the conduct of science.
    In realizing these goals, the NIH provides leadership and direction to programs designed to improve the health of the Nation by conducting and supporting research:

    • in the causes, diagnosis, prevention, and cure of human diseases;
    • in the processes of human growth and development;
    • in the biological effects of environmental contaminants;
    • in the understanding of mental, addictive and physical disorders; and
    • in directing programs for the collection, dissemination, and exchange of information in medicine and health, including the development and support of medical libraries and the training of medical librarians and other health information specialists.
    I think they're failing pretty badly. I wonder if they have ever been sued for lack of attention to a disorder.
  19. katiemoomoo

    katiemoomoo

    Messages:
    24
    Likes:
    0
    ENGLAND UK
    King's Award for Professor Simon Wessely

    Institute of Psychiatry / News
    King's Award for Professor Simon Wessely
    Professor Simon Wessely was presented with the King's Award for Media Personality of the Year 2010 last night at a reception in the Weston Room, Maughan Library, Strand Campus.

    For the fourth year, members of the College community gathered to celebrate the excellence and contributions of staff and students. Adam Boulton, Sky News Political Editor and member of College Council, reprised the role of Master of Ceremonies while the Principal Professor Rick Trainor presented the 20 King's Award winners with their awards and paid tribute to the hard work and dedication of all staff, students and alumni. Professor Wessely's award was for the academic who had secured exceptional positive media coverage for the College over the previous year.

    Professor Wessely said: "I am pleased and touched by this recognition from King's. It is very important for scientists to engage with the media - to ensure the public has access to accurate, evidence-based scientific information, to keep us ever present in the minds of policy makers and funders, and to inform public debate. Also, I can honestly say, it's a lot of fun!"

    Professor Simon Wessely is a trusted port-of-call for journalists who need an honest and reliable source of information delivered in a way which is meaningful for their audience. He is committed to science communication and sits on the Science Advisory Panel of the Science Media Centre an independent organisation dedicated to facilitating scientists to engage with the media and improve public access to accurate, evidence-based scientific information. He will always make time for the media and has been known to give interviews on the telephone en-route to Paris during his annual cycle ride to raise money for ex-service men and women in need.

    Professor Wessely trained at the Maudsley Hospital in 1984 and moved over to the IoP in 1989, where he has remained ever since. Shortly after starting at the IoP he penned a column on science and health for The Times, which was his introduction to journalism and the media. He has carved a reputation for being warm, receptive and at the forefront of research within his field; a persona which translates through the range of media platforms. He has taken part in media training the next generation of science communicators at the IoP and encourages his team to engage with the media.

    His research interests have included epidemiology, post traumatic stress disorder (PTSD), psychological debriefing, chronic fatigue syndrome (CFS), history, chronic pain, somatisation, Gulf War illness, military health and terrorism. Most recently, however, he has focused on military health and is Honorary Civilian Consultant Advisor in Psychiatry to the Army.

    As Professor of Psychological Medicine at the IoP and Director of the Kings Centre for Military Health Research (KCMHR), Professor Wessely recently led positive media coverage on complex research results which contradicted expectations that PTSD in the UK Armed Forces was increasing but highlighted that alcohol misuse was rising, as well as showing some of the benefits of military service on mental and social functioning. Amongst other interviews this year, too numerous to mention, one of the highlights was a Q&A interview with Nature magazine.

    Prof Wessely is an asset to Kings in its endeavour to disseminate cutting-edge science to the wider public.

    For further details of the King's Awards and details of the other winners: http://www.kcl.ac.uk/about/structure/admin/extrel/staff/depts/pr/ic/kings-awards-2010/
  20. katiemoomoo

    katiemoomoo

    Messages:
    24
    Likes:
    0
    ENGLAND UK
    I cannot believe what i am reading.

See more popular forum discussions.

Share This Page