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Another Stupid Study from the UK

Discussion in 'Latest ME/CFS Research' started by Cort, Jul 16, 2009.

  1. markmc20001

    markmc20001 Guest

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    greenburg

    I just watched the movie "Greenburg" with Ben Stiller. They portray Ben stiller as having some kind of Mental disease but it looks as though he has a neroimmune disease to me.

    Hard to explain, other than just watch it and see if you see for yourself.
  2. Min

    Min Senior Member

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    Unfortunately most give to Action for ME (whose COE appears to earn about 80,000) & think that their money will be spent on biomedical research into M.E. - it isn't.Only MEResearch UK and Invest in ME seem to be using the Canadian Consensus Criteria to select patients with ME, & to avoid researching people with vaguely defined ME.
  3. Dolphin

    Dolphin Senior Member

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    In my experience, most don't give to ME charities at all.
  4. Angela Kennedy

    Angela Kennedy *****

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    The situation in the UK in particular is extremely problematic with the charities (this includes research charities), and the issues around giving money to private fund research are complex. I have very good reasons, for example, for not giving money to research, around ethical problems with those charities, and indeed ethical, political, and scientific issues around some of the research programmes.

    It's actually simplistic to just expect people to give to research money they might spend on treatments. There's a whole can of worms about expecting patients funding research - ethically, politically, and indeed scientifically.
  5. Dolphin

    Dolphin Senior Member

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    People can come up with excuses for not doing most things in life; in particular for not donating to charities of one sort or another.

    I think the best approach in life is to be solution-focused: there needs to be more research, how does one try to make that happen?

    A lot of people in the UK in particular may think that it is government's responsibility to pay for all the needed research because it is basically the government's responsibility to pay for healthcare.

    But when you start breaking down the figures, and realise that these have to fund a lot of basic research which may turn out to be useful in the end (e.g. the research on MLVs) as well as all the hundreds of fairly common diseases and thousands of other conditions, one realises that even if ME/CFS got its "fair share", progress would be slow. People don't just want progress some time; they preferably want it in the next decade or two or preferably earlier.

    A lot of people have resources they can tap in: a bit of money they can tap into, family members etc they may be able to tap into, a bit of energy of one sort or another that can be used to help raise money. It depends how they want to use it.
    Giving to research can be seen as helping to increase the chances that good treatments will be available (including perhaps for free/near free as part of the health system) rather than simply some altruistic act like giving to "poor" people in another country - it can be seen as helping oneself in a non-direct way.

    Treatment at this time is also very speculative. Also, a lot of it is unlikely to be curative.

    The idea isn't simply to give money that they might spend on treatment to research. Giving say 1% of what they spend on treatment gives an idea of their disposal income, how important the issue is, etc. They could exactly the same amount on treatments and just give the money from other money.

    I accept that people can make a million and one reasons why they don't give to research. Whether that solves any problems is another thing.

    If you have better solutions to the problem (that there needs to be a substantial amount of research) that you propose rather than simply not liking this particular idea, I will be more interested in a response.
  6. Angela Kennedy

    Angela Kennedy *****

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    Here are my problems. The ME/CFS community is periodically subject to some rather browbeating exhortations to give to research. Spending money on 'unproven' treatments is not approved, even when it helps people. Pleas of poverty fall on deaf ears, even though poverty is a major problem for sufferers, even those who have managed to raise some money for treatments.

    The reasons people may choose not to give money to research are:

    1. Poverty. Full stop. A lack of understanding by some of just how poor ME/CFS sufferers might become is a major handicap in community advocacy.

    2. Being faced with an ideological demand of irrational altruism. People are exhorted to pay for research that may have little to no positive effect on their health, ever, at the expense of having 'unproven' treatments that may actually help them here and now. But, rationally, people benefitting from unproven treatments will want to understandably continue to use what little money they have on treatment that works now rather than some nebulous idea of 'the science' bringing some miraculous panacea in the future.

    3. The various charities funding research want the community's money, but some do not want to be accountable to their funders. This leads to certain charities raining 'friendly fire' on advocacy attempts, colluding in keeping certain things secret from the community, claiming that the concerns of the community are "other people's wars" and refusing to support advocacy initiatives, problems that have occurred in recent years. This inevitably leads people to wonder whether they should be funding charities that may be sabotaging advocacy.

    4. Related to this is the realisation that money donated by a sufferer or family may not be used in research that is ethically or scientifically acceptable to them: 'Seedcorn research' where more projects that build upon what is already known is what is needed; futile, cruel 'animal' research that actually sets back progress in real time; collaboration with other people whose names raise alarm bells; researching on unsafe concepts of 'stress' or 'fatigue' or 'neediness'; or failing to use suitable cohorts, as just some examples. These are massive problems facing an increasingly knowledgeable ME/CFS community. It is inevitable some people will not want to fund research of this nature.

    5. Piecemeal research funded by small donations may not be taken seriously, or worse still, deemed as pandering to specific interests, by opponents. People may wonder if their funding such research is futile.

    There may be other reasons. Indeed, the above applies across the board of research funding for all conditions per se. The exhortations to the community to fund research tend to ignore these legitimate objections, instead implying the community are recalcitrant, miserly idiots who spend their copious money on crazy, useless treatments.

    Addressing these problems and treating the community with respect rather than as idiots might actually work better for those who wish to raise funds for research.

    This is only a shortish answer. There are all sorts of issues around MRC funding etc. which is why, as you may know, I've been involved a lot in exposing MRC inconsistency on funding for biomedical research over the years, so I have actually been working on a solution, with others, whatever its success or lack of it.

    And exposing problems does not mean one must have some magical solution. In this case, there isn't one.

    The issue of funding research is far more complex than a simplistic belief that a little bit here and there from all patients will be the solution.
  7. Dolphin

    Dolphin Senior Member

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    This is the nub of the problem: if you think there is no magical solution, any solutions you suggest could likely also be criticised. I may reply in detail again. As I say, one can justify not giving to most charitable causes. That does not mean the world would be a better place if nobody or few people gave.

    Different people can think there are different solutions to the same problem. We should be able to live and let live.

    (next post was a duplicate - thought I was editting this post).
  8. Dolphin

    Dolphin Senior Member

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    So just because some people may be in poverty, we shouldn't encourage those who might not be to give? I think that is not very focused on solutions.

    Not everyone is in poverty. Maybe there is a lack of understanding that not everyone is in poverty or not everyone has no relatives who might support if asked? I don't ask my siblings for money for myself. But they have supported ME/CFS causes.

    People in poverty will see lots of appeals in their lives e.g. ads on tv for various charities. Should ads for charitable causes be banned from tv?

    In my work, I don't see evidence that people who are in poverty are giving too much.

    Suggesting that people consider giving 1% of what they are spending on treatments adjusts to a large extent to people's disposable incomes. But this isn't a tax - nobody is forced to give.
    Although without appeals, the money may be spent on other things - including other charitable causes which have put their case forward, sometimes paying a lot of money to "middle men" for advertising.

    Back to the poverty issue: a lot of people are poor in terms of their "energy levels" - one could say that calling for actions shows "a lack of understanding by some of just how poor ME/CFS sufferers" in terms of the free energy people have.

    One can make up all sorts of reasons to not do things, or not ask people to consider doing things, if one puts one's mind to it.
  9. Dolphin

    Dolphin Senior Member

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    And that's the thing. A lot of people have spent quite a lot over the years trying treatments. Thousands, sometimes tens of thousands, is not unusual.

    One can not assume in this discussion that because people have tried a treatment, that it has benefited them. Most people will have tried treatments that will not have benefited them or only gave very temporary relief.

    Not everyone is making the same message here. For example JB calls for people to stop trying unproven therapies and give the money to research. That is not my argument. My argument is to look at how much one is spending on treatments and whether one could afford giving 1% of that to research. People can decide how to come up with the 1% themselves. They may decide that most of the treatments they are trying are worth trying but one might be more speculative than the rest - most people will always have even more treatments they'd like to try or keeping doing. Or they may decide to use money from other aspects of their lives.

    These are people who want to do what they can to improve their health.
    One suggestion to put on the table is a more long-term strategy that could have a snow ball effect in the long-term.

    There are various sides to this angle. I don't feel comfortable discussing them on an open forum at this moment in time.
  10. Dolphin

    Dolphin Senior Member

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    Is calling for government research likely to guarantee any better funding in the short-term? I think on average charity funded research will help us more than government-funded research which may have many if not most of the same problems as listed above.

    The best can be the enemy of the good.
  11. Dolphin

    Dolphin Senior Member

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    People can wonder if most actions in life are futile.

    There are no guarantees in this life.

    There are no guarantees if one tries treatments, for example, either.

    With a better research knowledge basis, one can have a better idea what works. So one might not just spend money on a treatment that may not work but also time and energy. One might learn what treatments are harmful. One might also be better able to track progress on a treatment - markers may show up improvements even if there are short-term worsenings of symptoms.

    So to re-iterate, lots of things could be futile. Lobbying might be futile. Responding to messages on forums might be futile.
  12. Angela Kennedy

    Angela Kennedy *****

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    You are not actually telling me something I don't know- or anyone else here I'll wager.
  13. Angela Kennedy

    Angela Kennedy *****

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    But you were heading towards an exhortation and critique of the community to give money to research - and these, by various people, have been of the sort I have a problem with. So I needed to raise my objections.
  14. Angela Kennedy

    Angela Kennedy *****

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    I really think you do not understand the level of poverty people are finding themselves in. You believe poverty is a weak excuse? Or do you accept poverty may be a factor in not giving to charity?
  15. Dolphin

    Dolphin Senior Member

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    People can decide that themselves. Lots of people may make posts on lists/forums that lots of people have already considered.
  16. Angela Kennedy

    Angela Kennedy *****

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    It doesn't matter what you think is best, or I for that matter: short-term, long-term, people do what they have to do. Some people may choose to give to research. Fine. Others do what I and others have been doing.
  17. Dolphin

    Dolphin Senior Member

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    You "needed to" or you "wanted to"?

    Nobody knows what any one person gives so I don't think people need to say if they don't give personally (if that is what you are saying).
  18. Dolphin

    Dolphin Senior Member

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    And people should be free to throw out suggestions - like trying to raise money for research. Just as you may throw out your suggestions about how you think people might be able to help.
  19. Dolphin

    Dolphin Senior Member

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    Did I say nobody was in poverty? I said not everyone was in poverty (I suggest people check the first line). If you think everyone is in poverty we can argue that if you like.

    We can also discuss the fact that people are "energy poor" and similar arguments could be made about suggesting people "donate their energy" to anything e.g. write letters to politicians or whatever.
  20. Angela Kennedy

    Angela Kennedy *****

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    But you do have this idea that people SHOULD do this or that I've noticed, and yes, Bearman's exhortations are excrutiating.

    But your '1%' might just not be feasible, and your arguments may not persuade people who already have problems like the kind I've outlined. They might, but you and others I would say need to steer away from the exhortations and the panacea talking and the misrepresentation of people who choose NOT to give to 'research'. It's not fair to people for various reasons, and might be counter-productive in many ways, even for the community as a whole.

    As regards the issues you don't feel comfortable about. That's fine. But I am comfortable discussing them.

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