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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Another Stupid Study from the UK

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

  1. Dolphin

    Dolphin Senior Member

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    We can all have issues with people's styles, how people say things, etc. We could argue forever that what X says is the wrong way to say something and somebody else could say what Y said is the wrong way to say something. Or don't like what X says or Y says.

    I say people should seriously consider it and give my reasons.
    Somebody else may say somebody should seriously consider writing letters or whatever and give their reasons.

    I don't accept a lot of the points you made and have given my reasons. You don't have to accept them - that is your right. I don't have to accept what you say, and that is my right.
     
  2. Angela Kennedy

    Angela Kennedy *****

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    You've misrepresented me here. I said I don't think you understand the level of poverty in the community. I didn't say everyone is in poverty. Indeed, people not in poverty may be giving to research. People in poverty may be giving as well.

    But poverty is a real reason not to be able to give to research. And your manner on this issue has been dismissive. I'm reminding you of the level of deprivation in a community where getting welfare benefits if difficult, where being able to work is often impossible, where parents may not be rich or able to financially support sufferers, etc. where there is no support from siblings etc. because the sufferer has a devastating but trivialised illness.

    ME/CFS sufferers in particular have 'multiple jeopardies' (see Deborah King on this) in their lives, that compound each other.

    And yes, there is an awful amount of hectoring of the 'energy poor' (aka VERY sick people and people in deep adversity) as well that goes on while we are at it!
     
  3. Dolphin

    Dolphin Senior Member

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    So given you accept this, is the solution to say that nobody should suggest anything to victims. That is why I want to hear your solutions. It is relevant to the discussion. One can criticise one proposal but another proposal can have many of the same problems.

    Personally I think suggesting things people can do is useful giving reasons. But there is no compulsion.

    You may perhaps think suggesting anything to victims is unfair?
     
  4. Dolphin

    Dolphin Senior Member

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    And I'm reminding people that not everyone is in this situation with no money and no relatives who might donate or fundraise.

    And now (although I don't think this has come up in the thread) I am taking the opportunity to point out that things can be relative - people may not have as much money as when they worked but might, for example, be on an insurance policy which gives 50% or 66% of their income and some of these may have disposable income.

    Do PWMEs and their families support no charitable causes? I don't think that is correct. Many do. I'm putting the case they consider supporting research without spending any money on advertising.
     
  5. Angela Kennedy

    Angela Kennedy *****

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    No. You can say what you like - I can't stop you.

    But what I can do is raise legitimate objections to what you argue, which I've done.

    By your logic, I shouldn't raise objections to the misrepresentation of people, because I'm suggesting no-one should say anything to victims?

    We could go on like this all day.
     
  6. Dolphin

    Dolphin Senior Member

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    You've been active for a number of years. It seems to me it is likely you either have suggestions that you think you should people could consider doing (which I think is similar to suggesting people consider donating money as this is a request to donate energy from energy poor people) or you prefer not to make suggestions to victims.
    I am pointing out that people can come up with lots of problems with solutions especially if they go into victimhood mode.
    I also think that not making suggestions and we all do our own thing without giving reasons why we think it might help if other people try something similar isn't any better if one is focused on solutions.

    We could indeed. I'm would prefer to concentrate on another project which doesn't involve making any suggestions to people.
     
  7. Angela Kennedy

    Angela Kennedy *****

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    Ok- now you are misrepresenting me again.

    I've laid out why some people don't give to research, and my own objections to the hectoring of people to give to research that involves misrepresenting people who don't as recalcitrant, lazy, selfish idiots who are too busy spending their money (which they have enough of) on crazy treatments that don't help them. I've only touched briefly on some of the complex problems around patient funding of research, and a careful thread on this would uncover all sorts of issues around funding, around 'science' around patients enagement, around claims to objectivity etc. etc.

    These are important issues that I think the community does need to get to grips with. I don't think we (patients, other advocates) are there yet.

    I'm not happy actually with your trivialising of the issues in comments like the above.
     
  8. Dolphin

    Dolphin Senior Member

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    You don't know why people don't give to research. That is not likely to be a definitive list.

    And I think it is relevant to point out that people can make lots of reasons not to give to charitable causes. On average the people who donated to the charitable cause helped more than people who came up with a reason not to give.

    That was meant to be an innocuous comment that I was trying to end the thread without either person having to continue. Perhaps I did not say it as well as I should have.

    I just edited it before you posted (or at least your mail hadn't appeared in my inbox) in case people are confused - initially the post was just one line.
     
  9. Angela Kennedy

    Angela Kennedy *****

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    Hang on there. What do you mean by 'victimhood mode'? Is that really how you see people who cannot or will not give to research?

    I can make suggestions all I like. But if there are problems in what I suggest, then people bring them up - or at least, they should. And this is what I've done to your 'suggestions' here. Or is that going into 'victimhood mode' (whatever that means???)

    I'm amazed at that victimhood comment. Absolutely gobsmacked.
     
  10. Dolphin

    Dolphin Senior Member

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    That was an attempt to characterise what it appears are some of the points in this discussion i.e. "Don't suggest to people to donate because many are in poverty." "Victimhood mode" would also include not suggesting possible solutions. People such as the ME community are victims so it is unfair to make suggestions to them.
    Given you haven't made suggestions about what you think people could be doing, I'm characterising what you are doing as being in "victimhood mode".

    And I was amazed at your comment in this message: http://www.forums.aboutmecfs.org/sh...dy-from-the-UK&p=122580&viewfull=1#post122580 . Absolutley gobsmacked. When people say things like that, don't be surprised when the other person argues back.
     
  11. Angela Kennedy

    Angela Kennedy *****

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    Ok - so you ad hominem someone who raises legitimate objections as 'going into victimhood mode'. Anyone who raise problems with what you think is the way forward is going into victimhood mode basically. That makes no sense whatsoever.

    Then you show a link to this thread. With comments that make no sense.

    This is not rational argument.
     
  12. Dolphin

    Dolphin Senior Member

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    No. It relates to the fact that you haven't given any alternatives despite plenty of opportunities. Instead telling us about the difficulties people have. Not solution-focused.

    As I have said, some of the same points you have made appear to me to be relevant to any suggestions people might make as people are time/energy poor.

    Telling me that I don't understand the level of poverty people are in is insulting in my eyes. I was gobsmacked as it wasn't a premise of my argument. My argument isn't that everyone is in a position to give.
    Lots of people can take offense about what other people who don't agree with them say. I imagine this can go on all night - you take offense at what I said, I'll take offense about what you said. What fun. :( Especially as by this stage, most people will probably have given up - except maybe a few who have strong views on one side or another.
    I would much prefer to spend my energy either doing something else or hearing other people's solutions.
     
  13. Esther12

    Esther12 Senior Member

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    Personally, I think it's better to give money to ME research organisations than to spend it on whatever new supplement's been touted this month. But I also agree with the points Angela raised about the limits of the work done by these groups... which is probably why my main way of donating is by going through this amazon link (http://www.meresearch.org.uk/support/shopping.html) whenever I choose to spend my money on CDs and other frivolities (a better use of my funds than either supplements or direct charitable donations!).

    Before I got DLA I was too broke for any such spending, and gave no money to ME charities - I didn't feel guilty about that though. I felt annoyed I didn't have any moeny for fun stuff.
     
  14. Angela Kennedy

    Angela Kennedy *****

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    But I don't think you do understand the level of poverty in the ME/CFS population. You've consistently downplayed this particular issue over the years- treated it as an irrelevance. You can take insult if you like - it wasn't meant that way. There's no shame in not understanding the level of poverty in a situation - most people don't. I didn't. But I really do not think you are aware of some of the deprivations affecting the community (or possibly around poverty in general), and I would ask you to consider researching this for your information.

    However, you well know 'victimhood mode' is a way of denoting that you think people who disagree with your 'solution' are playing a victim, usually manipulatively, or have some personal need to be a 'victim'. It's rather classic ad hominem, it plays on psychiatric misrepresentations of people, and either way, it's deliberately placed to place my motivations in a bad (and wholly incorrect) light.

    The points I'm making about money are EXACTLY the same as 'energy poor'. People are exhorted to chase their tails and criticised when they can't, or they think the proposed solution is futile, or problematic.

    Your "if you can't give solutions you can't raise objections" argument is a false premise. It's a red herring. Identifying problems is the first step towards finding solutions. If everyone who didn't have a solution didn't dare raise a problem (which is where your logic has taken this!), AIDS research would never progress for one thing! AIDS wouldn't have even been identified. All the scientists would fear to raise the problem because they weren't 'solution-focused' because they didn't know how to cure it...!

    And your own 'solution' is problematic. No other way around it.

    But, in your scenario, the saviour of solutions meets the victim role adopter. Amazing.
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Min wrote:


    Min, I'm a bit confused about what you mean here. It suggests that Invest in ME conducts research.

    Invest in ME hold an annual conference, undertake advocacy and have made donations towards research carried out by others (I think they made a donation one year to ME Research UK).

    Earlier this year, Invest in ME diverted funding that had already been raised for the aborted XMRV study by Dr Kerr and Dr Amolak Bansal (in a shared fundraising effort with ME Solutions for whom Dr Bansal is "Scientific Adviser") towards the WPI UK blood draws.

    But Invest in ME is not a research organisation, itself, so I'm not really sure what you mean where you say "...Invest in ME seem to be using the Canadian Consensus Criteria to select patients with ME..."

    Suzy
     
  16. Ian McLachlan

    Ian McLachlan

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    But then why are people who can donate not doing so? We often refer to ourselves as a community but apart from being united in wanted a cure, that is the only area that I can think of that we are really united on, yet still large sums are not being given over and it seems to be that the main reasons for this has to lie with the research charities themselves. The community are clearly not convinced by them. I dont give to any UK group for that reason.
     
  17. Min

    Min Senior Member

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    http://www.investinme.org/IIME Campaigning-Can Do Biomedical Research Fund.htm

    "For some while we have been thinking that we need to try to attract more funding which we can direct toward biomedical research - research which can be performed without the constraints or influence of a powerful psychosocial lobby which still influences MRC policy

    The Invest in ME Biomedical Research Fund

    This will be used for the following -

    *

    Biomedical Research into ME
    *

    Education Regarding ME
    *

    Conferences related to ME
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    Expenses in Sponsoring Presenters to Speak at Conferences
    *

    Cost of sponsoring PhD students performing biomedical research into ME
    *

    Set up and running of ME Clinic treating severely affected patients with ME
    *

    Assisting with equipment and other costs of researchers performing purely biomedical research into ME"
     

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