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How the government bought off the advocacy movement

Discussion in 'General ME/CFS News' started by RustyJ, Jan 2, 2013.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Following Cort Johnston's exit to Simmaron, it comes to light that the wife of another respected advocacy figure has recently joined Simmaron.

    Courtney Alexander, wife of Robert Miller, has been appointed Executive Director Simmaron Board of Directors. On Facebook, she goes by Courtney Alexander Miller.

    http://simmaronresearch.com/staff-board/

    It is no secret that the bulk of Simmaron's funding comes from the government.
  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Some patients may question what is wrong with advocates being employed by research/treatment centres like Simmaron.

    Simmaron competes as a business entity, for a pool of government and private funding, with other so-called me/cfs centres. This is occurring both within and without the borders of the US and thus takes place on a global stage. Whoever has the best business model and fits within the CDC's allocation parameters gets to survive.

    These centres each behave like a business entity. They promote themselves vigorously to their target markets. In most cases their research is tailored to support their treatment options. Yet ironically, each centre believes they offer the best treatment. There is no empirical check or evaluation procedure to assess treatment options, so one particular centre is not able to prove they are better or worse than another.

    At the moment and essentially for decades, research into NK function and cytokines, which is where most of these centres are now focussing, has yielded little in the way of treatment options or markers and it could be argued that the government is happy to keep it that way. Funding into other biological areas is non-existent, and the results of current immune research is too easily ignored by the wider research community.

    For patients to argue that their dollars are going to worthwhile research when they donate to centres like Simmaron is essentially not supportable.

    Of late we have seen a relatively new tactic being employed by research/treatment centres to bring in the dollars: the employment of highly visible and respected advocates. Cort Johnston is one notable recent addition to the ranks of Simmaron, the wife of Robert Miller being another.

    Cort, in particular, is heavily promoted by Simmaron: http://simmaronresearch.com/simmaron-rising/
    and Cort promotes Simmaron, so we have effectively what is typically called a 'cross promotion'.

    Cort and Robert can no longer be called me/cfs advocates.
  3. ballard

    ballard

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    I have the greatest respect for Courtney, Robert Miller, Cort Johnson and Simmaron.

    Not only are Cort and Robert ill themselves, but they have been tireless workers on behalf of many of us who can't do much.

    Personally, I wish them well and with great success in their future endeavors. It's easy to criticize and be suspicious, but these are, in my mind, the good guys.

    When you imply that that government funding for Simmaron's research is somehow tainted, I am really confused. Could you explain your reasoning? There must be something I am missing. Are you planning some other method of funding for major research? Could we raise enough money from people with ME/CFS to fund our own research?

    Thank you
  4. ballard

    ballard

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    Our posts crossed in cyberspace before I could read your further explanation.

    I can understand your frustration with Simmaron's research direction, if you do not believe it is useful.

    I, too really hate the fraudulent "fatigue" centers which set up shop to offer highly questionable "cures" to desperate, sick people with no other place to turn. But, I have never believed Simmaron to be of this type of treatment center. I don't think they pump up their claims and make promises they can't keep.

    Yes, medicine is certainly a business and the people involved have to make a profit in order to keep operating. If you do know of specific areas of questionable, unethical practices or overcharging at Simmaron, it would be good for all of us to know.

    We would probably agree that there should be much, much more research. I am just afraid that if we are always critical and suspicious, even with people with great track records, we will thwart even our most enthusiastic researchers and advocates.

    I have given money for research at Simmaron. Do you think that I should direct my contributions elsewhere? If so, where do you think that they would do the most good?

    Thank you
    taniaaust1 and ggingues like this.
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi ballard. You did have me gritting my teeth at one stage, lol. Whether or not you donate to Simmaron or any other cause is always a personal choice. I admit the decision is not easy, particularly if you are, like me, hampered by illness.

    I am merely trying to suggest that it is not always black and white. The history of me/cfs is littered with well documented betrayals at every level. All you can do is keep your eyes open and question everything. Most of all, question those who purport to have our best interests at heart. They are usually looking after themselves.
    beaker likes this.
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I truly can't answer that. At one stage I thought I could. Private research is probably the only chance we will have for a breakthrough, now. If anything, recent events make it clear that we can't expect too much from the government.

    Perhaps the revamped forum will offer such opportunities in the future.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    If you cannot answer that, then who can we trust with an answer? Lots of us have fogged brains, and cannot keep up with all the available info, so what are sick patients to do with their limited energy and money?

    GG
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I am hopeful that there will be significant changes within the forum over the coming months, particularly in terms of transparency. If this occurs, we will have a good starting point to begin asking those questions without fear of criticism or misdirection. The board has already begun initiatives to put patients first, with the offer of payment for articles. Other areas for investigation could include support for local community fundraising initiatives etc. For example more formalized support for programs run by orgs such as me/cfs Australia, but even further, down to neighborhood initiatives which have greater chance of being picked up by local newspapers. Eg Getting a wheelchair for Sally.

    Of course much of this depends on resources available, including the efforts of sick patients, but perhaps the community-based funding efforts may allow carers etc to play a bigger part in helping with administration matters.

    I might add that I have no connection with the board in any manner. I am just trying to look for an upside to the message of doom I peddled in earlier posts.
  9. Firestormm

    Firestormm Senior Member

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    Let me begin by saying I know very little about Simmaron. Therefore I would like to know why you think 'the bulk' of funding comes from government and why this is such a bad thing. Thanks.

    I will admit to looking at their website and being somewhat disappointed in that there was not much of substance provided there. I take it they are relatively new?

    I do think we have something of a situation whereby perhaps too many organisations are now asking for donations and I do worry that they are perhaps in danger of duplicating not only effort but also research direction.

    My own 'take' on non-profits and (in the UK) charities - that you might agree with - is that I do have a concern for those who try to operate as a business and decide to pay their non-research board members and significant salary.

    That though is just my own concern. I think charities are forced these days into adopting more business-like models of operation and I do not have a problem with that - indeed I welcome it.

    For too long I think charities were direction-less and unaccountable. I would like to see more accountability and transparency don't get me wrong (especially a salary system that is more geared to performance related pay than what we see now); but...

    If a charity can secure government funding or can cooperate with a government on a research project - I would say this is great news. You will never get every patient with an opinion to agree on the direction research is taken or on what the actual composition of the research is - but to slam Simmaron in the way that you have appears to me to be wrong.

    I would like some more evidence before reaching the conclusion that you have. What sort of organisation would you support that tries to raise funds for research? What research do you want? When WPI were the front-runner for people's support what was your opinion of them? Has this influenced your opinion of Simmaron perhaps?

    If I were able to join an organisation and fulfil an obligation of employment in order to receive a payment (salary); I'd jump at the chance. I don't know if you have a personal beef with Cort or Miller's wife (or Miller himself) but if you have, what has that got to do with who they chose to work for or support?

    Are you suggesting that Miller's wife's decision to join Simmaron is in some way indicative of this organisations status? That her being on the Board means Simmaron is 'bad' for patients? I don't understand what you mean I am afraid and would like to.

    Thanks
  10. taniaaust1

    taniaaust1 Senior Member

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    As far as Im aware, they are very new.

    Simmaron is Dr Daniel Petersons org if Im remembering correctly. Dr Daniel Peterson has been there for us since the Lake Tahoe ME outbreak in the 1980s.. he and Dr Cheney were the two doctors dealing with the ME outbreak people. Dr Peterson has done much for ME/CFS advocacy worldwide..even coming to Australia to talk to our doctors and people here on it. I went to his talk when he came to Australia quite a few years ago now.. he gave a good talk and was very down to earth.

    .....................
    Im hating how some have so little trust that they are now publically knocking without any good reason at all, those who have worked hard for us all. I dont think that's really a good thing at all. Yes ask questions but just cause someone is receiving gov funding, it dont necessarily mean the group is bad. We all need the studies this group is doing to go ahead and they need donations..

    The NK function issues are thou just becoming more generally publically known in medical circles.. and the more attention this is given and brought to the attention to our normal doctors the better. I myself cant even get a ME function test as my CFS specialists dont seem to be aware of this enough. Good studies bring not only findings and more insight on what previous studies in fields have shown.. but also help to bring more good advocacy about the issues in us. The study being done.. as far as Im aware is going to be taking the science FURTHER then before, its doing new things in it too.. and hence why they are fund raising to get a new piece of equipment.

    It is good that one area is actually being focused on better.. one big issue Ive seen over the long time Ive had this illness, in the ME/CFS field, there has been so many just basic or single studies done without further studies.. abnormal findings just left and abandoned and not further studied on. They need to sort out what is happening with the NK function in some of us etc etc.. the hows and whys and whatever else.. this field of study just cant be left. (I assume u may of have a normal NK function test so hence against money being put into this field? All the different subgroups of CFS need to be looked at, abnormalities in us need to be deeply looked into, no matter what they are)

    Duplicate studies which validate previous studies are necessary for the medical profession to start believing findings.. Duplicate studies is one of the reasons why everyone is brainwashed with the CBT and GET stuff.. one hears about a study often enough and in the end people believe it... even if it was poorly done.

    Thou I think its great all the new orgs working to help us.. I too are concerned on how each of these orgs are going to get the funding they need. Hence I think its more important then ever for ME/CFS patients to be supporting and trying to help these orgs.. one of them could lead to the answers we all seek
    SOC likes this.
  11. adreno

    adreno 3% neanderthal

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    Which government is that, and why would they be happy about people continually being sick?
  12. Firestormm

    Firestormm Senior Member

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    I found this recent announcement on their Facebook page, but I can't seem to find details of the 7 projects they have funded. Very strange but maybe their website is in need of updating.

    Perhaps they should pay someone to do this kind of promotion? ;)

  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    They're not sick, they're fatigued, or malingering. The CDC doesn't really believe that cfs is a serious disease.
    beaker likes this.
  14. Firestormm

    Firestormm Senior Member

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    Yep about the duplicate stuff. Simmaron state that they will provide 'pilot' studies using their data base records of well chosen patients with ME to help facilitate the larger ones. This appears to be their unique angle.

    I am perhaps reassured by initiatives such as the OMI whereby experts are coming together to share what it is they are doing separately, and pooling knowledge. As a patient I do find it hard to follow who is doing what and how. Perhaps it is just my lack of comprehension but for some time know I have felt we are 'spinning our wheels' over research.

    Of course it's a generalisation and reflective of a lack of progress i.e. results. Wholly subjective. Wholly biased. And reflective of my 'I am so fed-up with it all' status :)

    Having said all of that LOL I am currently transcribing the recent talk from Professor Julia Newton and that's something which gives me hope for several reasons - one of which is that I don't think anyone else has produced the results that she has. I could be wrong but what she is doing appear more likely to result in a useful drug treatment.

    Proof is in the pudding... No. In the eating... LOL I am out of here. Need a rest :)
  15. Firestormm

    Firestormm Senior Member

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    The CDC and indeed any (every) Government has an obligation (if only a monetary one) to try and get us back to work if nothing else. Even if we are 'malingerers' we ain't working dude. And we are costing those that are - mega bucks ;)
  16. adreno

    adreno 3% neanderthal

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    The argument that governments would be interested in keeping people sick (physically or mentally) and off the workforce, is one of the lamest I have ever heard. Yeah, wouldn't it be great if everyone was sick, and no one was working, that would really be wondrous for the GNP, the national debt, the country's status in the rest of world. Not to mention that "the rich and powerful" wouldn't be rich or powerful anymore, because they would have no one to work for them, and no customers for their businesses. I can really see why "the government" would want that.
    SOC, Firestormm and snowathlete like this.
  17. snowathlete

    snowathlete

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    I can't agree with all of what the OP says on this. Only that transparency is generally good in this area.

    There is nothing wrong with government funding. It is better than no funding. People like Cort have the skills and experience to make MORE money elsewhere if they chose to and it is normal practice EVERYWHERE for charities, non-profits, as well as profit making businesses to pay staff for their work ,as part of opperating as an effective organization. It has been this way for decades - there is only an issue if it is fraudulent or where someone is filtering money off beyond what they should reasonably be paid for whatever their contribution is. I haven't seen any evidence of that.

    You can't reasonably say that a group is researching the wrong area because we don't yet know what the right area is. We may all have opinions but that's all they are until details on the disease(s) is nailed down.

    As others have stated it is nothing more that a far-fetched conspiracy theory to state that the government want to keep us this way. It doesn't make sense logically. You might have some success stating that the government is putting money in the wrong areas because they make the wrong decisions or have other motives driving their decision making, but in the case of the former this is just an opinion that may or may not turn out to be correct, and in the case of the later there is no known evidence that I am aware of.
    SOC likes this.
  18. beaker

    beaker CFS/ME 1986

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    The way I read this was that mainstream medical and the government agencies do not take this illness seriously. It's not that they want us sick ( per other comments of financial reasons the gov. wants us to be well)
    They don't believe we are sick, or that if we are it is anything serious. ETA : and obviously even if they think we are malingering or sick. or whatever and want us to be well. their approach hasn't gotten anyone better or well. and there has been no money in trying to figure this out. It's not a conspiracy to keep us sick it's ignorance of this disease. They seem to be fans of Orwell " Ignorance is Bliss" as far as ME/CFS goes.

    Case in point:
    I was invited to sit in on a meeting to discuss a potential study a couple years ago. It hinged on the academic at a university medical school/hospital to make or break the proposition. They had to, of course, then present to their research staff. The study was declined. They gave a lot of reasons that seemed rather shallow. So
    I asked this person point blank : if the other doctors/researchers on staff that would had to be involved took this illness seriously. The response was a polite "well you know a lot of illnesses weren't taken seriously early on like lupus, heck they even said FM (!) etc..... " I said in other words NO. and the response confirmed that.
    And that is the problem. That is why so many do not get involved.

    The CDC has a responsibility to educate and inform the medical community. They may say a lot of stuff to patients these days . But that's all it is , talk. Their website ( and poor funding) should be proof enough.

    ___________
    BTW --There was a glitch. It has been fixed. I couldn't post. or I posted blank posts. or It had me quoting posts I didn't meant to reply to w/ nothing from me on it. I had to reported the funky post ---was the only way to contact anyone ! I couldn't start a conversation or send an email to "contact us " !
    Thank you Kina !! and to the unnamed techie for fixing it !!
    _____________________
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  19. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Not sure how posters arrived at the conclusion that I said the government wants us to be sick. The point is they don't think we are sick. The reason PACE, GET, CBT, Lightning programs are vigorously endorsed by various governments, is because they don't think we are sick. Millions are spent on these programs, despite their failure, in an endeavour to get us back to work.

    And for those who think still have doubts about this, ask Australian and UK patients how difficult it is to get on a pension, without facing skepticism and indifference from everyone in the chain from doctors to government departments. I seriously doubt the situation is all that much different in the US. These governments think we should be working and they try very hard to get us to work, even if it means denying pensions.

    It is the CDC which coined the phrase ''chronic fatigue syndrome''. It is the CDC which established definitions that in essence define me/cfs as fatigue. It is this demeaning and misleading phrase which has contributed to social and medical disregard for the illness.

    For those who still doubt the validity of my argument, there are many threads on this forum which go into great detail on these matters, citing CDC comments, patient experiences, documenting aspects of government policy. The mountain of evidence is quite overwhelming.
    beaker likes this.
  20. adreno

    adreno 3% neanderthal

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    If that's your point, then I stand corrected. But are you claiming that the CDC is aware that ME/CFS is a physical (neurological or immunological) illness, but try to hide this fact, or try to force patients back to work nevertheless? Or are you saying that they simply believe that ME/CFS is psychosomatic? If there is in fact evidence that they are withholding information, then that is a grave matter. But if they are simply acting on the belief that ME/CFS is psychosomatic (based on a lack of knowledge), then they are actually doing nothing wrong.

    There is also the simple question of priorities. The CDC are likely more focused on larger diseases that affect a larger percentage of the population. And rightly so, even though it is unfortunate for us.

    In any case, if "the government" (I take it you are referring to the US government?) does not believe we are sick, why are they funding Simmarons immunological research? That doesn't seem to make any sense.

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