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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. Jarod

    Jarod Senior Member

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    Hey Bob and all. Maybe it is worth a shot to contact a few new media websites with a story and see if they will take it?

    For instance, I think the Huffington Post, and the Examiner.com might be open to articles from us.

    However, I am certain there are many alternative websites and blogs, like Mercola's site that would be happy to take a well written article from us.

    With the smaller sites, it is just a matter of contacting one person who can make the decision to allow and post the article. Done deal. Just a matter of us identifying the best sites to approach, and writing a good article.
    alex3619 likes this.
  2. currer

    currer Senior Member

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    I would be willing to get involved with this, but next year! Cannot find time atm.

    It would be a valuable long term project. The problem would be - publication!
    How could we be sure of getting what we write to public notice?

    However I think it would be something PRs could excel at. We have honed our writing skills here.
  3. alex3619

    alex3619 Senior Member

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    One word: teamwork. Groups can write articles far better than individuals unless its a short project. We also know we can get published. Its not necessary to publish at high impact sites. Publish anywhere, though an article has to be compatible with the target publication.

    With respect to Bob's comment on prior preparedness to reply to issues, this is the sort of thing that requires people, resources and time to analyse the situation. If we are pushed too hard on too many issues, who is going to have time to deal with it? I do agree its worth doing though, I think advocacy organizations can do better. I will have more to say on this later.

    Bye, Alex
  4. alex3619

    alex3619 Senior Member

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    Hi Bob, this is one of my proposals, but I think we need a Neuroimmune Media Institute or something, not just ME. If you do know of anyone looking at this, I would be pleased to contact them.

    Bye, Alex
  5. barbc56

    barbc56 Senior Member

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    If we did this I think it might be wise to not include doctor's such as Mercola, who is not considered a mainstream doctor. It might add more controversy. I understand some people like him but I think we need to tred lightly. What about Dr. Klimas?

    Barb C.:>)
  6. barbc56

    barbc56 Senior Member

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  7. Bob

    Bob

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    Asking researchers, doctors and scientists to put their names to any press releases, is an excellent idea.
  8. Bob

    Bob

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    Ah, yes, I think I've read some your posts about such ideas...

    I don't know anyone doing this, but I thought that someone mentioned something in this thread.
    I think it was someone active on the other forums, so maybe some of them are organising themselves.

    Sorry alex, I think this thread's too long for me to find the post.
  9. Bob

    Bob

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    I think there's a few hurdles to achieving something like this, especially considering our limited capacities...

    Such as: our availability over a period of time; our ability or willingness to commit to a project; if we have the appropriate/specific talents needed; if we have appropriate knowledge and insights re journalism etc.; our willingness to lead or organise a project; willingness to stick with a project; ability to put in the effort to see a project through; if we have the flexibility to work in a team; compatibility of personalities etc, etc.

    I think these requirements are why ME patients don't get it together very often to do group work.
    As soon as we have expectations placed on us, we remember how much time-out we need, and how we can't commit ourselves to anything.
    And our illness probably make us inflexible in various ways.

    I never feel happy about committing myself to big team efforts because of my insufficiencies relating to some of the items in the above list.

    I think it's also pretty difficult, for people who don't know each other very well, to know if they can work together, until they try, and then they quickly realise that they can't.


    I suppose, in a good team, there would be various talents and abilities, and each could bring their strengths to the table, so their is strength in a group. And there wouldn't be any pressure to perform, as we'd all be going at a snail's pace.

    I think I'm good at coming up with ideas, and brain storming, but I really struggle to write formally (not such a problem to write informally, on the forum, obviously!)

    I find it really difficult to write well polished pieces of text, for various reasons.
    Partly because I find it mentally exhausting to work with large pieces of text, and partly because my mental organisational skills aren't great, and partly because my memory is so useless, etc. All because of the ME.

    I really struggled with my recent PACE report, and I'm not very happy with it.
    But it's the best I can do without focusing on it for another few weeks, full time.

    I've re-written it, and I'm still not happy with it.
    Now I'm trying to write a brief summary of it all, and I know it's going to be a major struggle and will take weeks, if I can face it. Someone offered to help with it though, and it might be much easier working with someone.

    Really, a few of us should get together with PACE and write more about it.
    It's something many of us are very clued up about, but we haven't done anything as a group, beyond the excellent and constructive PACE Threads, except for the Graham and Janelle project.
    We could potentially write multiple summaries and explanations etc., for different audiences/readers.


    One other problem is that we don't all know each other very well, personally, and it's difficult to know if any of us would see eye-to-eye on a project, or if we could work together.

    Maybe we should set up a private group to have discussions about what we could each contribute, and to see if we might be compatible, and if our ideas are similar?

    But I'm not sure if it would work.

    Experiences tells me that compatibly of personalities and ideas is the most important issue.

    Maybe I'm being too pessimistic, and focusing too much on hurdles. But I think these are all issues that we'd have to deal with.


    Anyway, these are just my rambling thoughts, and I'm not proposing anything specific.

    Edit: I think I've just frightened myself off getting involved in forum group projects! :eek: (But I'm open to exploring the idea.)
    GracieJ likes this.
  10. biophile

    biophile Places I'd rather be.

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    currer. I do not think illness should automatically grant freedom from criticism. However, I do agree with the general sentiment of your post. Illness and background should be taken into consideration for the context of people's actions. Any constructive criticism, when necessary, should be done carefully. I agree that other patient groups would not tolerate largely unsubstantiated allegations about militancy and the ongoing abuse or neglect from wider society, with these being a main reason why some people within the ME/CFS collective appear to be "disturbed" apart from dealing with a heavy symptom burden as well. The reality is ignored because we are afforded no respect and people like easy targets. I think one of the reasons some may have a "desire to identify with the powerful - even at our own cost" is because they disagree with the approach of current advocacy and want to avoid being appearing militant to the public or accused of (or associated with) militancy by people in positions of authority.

    Firestormm. Somewhat related to the issue of asking for evidence: news articles often if not usually use qualifiers such as "allegedly" when covering reports of crimes, even if arrests are made due to evidence and cases are going to court. When it comes to such coverage on ME/CFS however, not only does there appear to be a lack of evidence, but there are no qualifiers such as "allegedly", despite no arrests or court cases.
  11. biophile

    biophile Places I'd rather be.

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    Thanks. I edited the post to include limitations of capacity, which I think is perhaps the worst problem and obvious explanation for a deficit in advocation. Based on my very limited engagement with a local organization, I guess many such organizations probably face major struggles just existing, let alone pulling off major feats of advocacy. There are not enough healthy people with the same goals and determination. I am pushing my own limitations just for contributing to this thread over the last several days, soon I will need to back off.
  12. alex3619

    alex3619 Senior Member

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    I do understand about limitations Bob and biophile. I run into mine regularly. I was only a minor contributor to the PACE analysis, with quite a number of others working on it, including Graham and Janelle. It did convince me a group collaboration can work. One advantage we have is that we, or at least most of us, know how to pace ourselves. It takes as long as it takes. Slow and steady is what does it. One thing we need though is an organizer, and a core group of committed people.

    The PACE analysis however is much too long as an article for some of the kinds of target publications we are talking about. It really depends on how much analysis is required though, and what skills are required to do that. However every project requires people to work on referencing, formating, spelling, grammar, readability and just general feedback. If they can effectively use a search engine, even better. If someone can still read, they can contribute.

    For us, speed cant be a driving force, nor deadlines. Focus on the goal, and ignore the days passing, is my advice.

    My local ME/CFS society collapsed in the late 1990s. There were no longer enough people who were well enough to keep it running, in almost 800 members. Advocacy for this disease can be very difficult at times.

    Private discussion on topics of interest are one way to advance group projects. Its important, I think, that a topic be something that we find interesting. That interest will help sustain us.

    Bye, Alex
    Bob and Enid like this.
  13. Enid

    Enid Senior Member

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    Alex - off thread but did want to mention just how appalled I was at your local support group of 800 members having to give up through ill health. We have the same here and I see across all the counties here local groups forming and reforming or disbanding as health permits. It shows the scale of ME going unreported - I'm horrified. Take in the charity members, forum and web groups for those who are able - oh dear.

    Some good ideas coming your way I hope. Will put my thinking hat on too. I agree the "spokesman" must be a scientist or Doc able to grasp all the latest biomedical research findings and relate to specific gobbledegook in the press in order to respond effectively on the one hand whilst holding a central information position as press office ........if that's possible. Something like the Press Office for Neuroimmune diseases springs to mind but then I always was an optimist.
    currer likes this.
  14. Firestormm

    Firestormm Senior Member

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    According to Sonia then there was another version from Thompson titled: ‘Beware the wrath of the ME militants’ published in the actual hardcopy of the paper. Don't suppose anyone has seen this posted anywhere? Must admit that whilst I had heard some claiming a hardciopy version I was under the impression both blogs were online only. Ah Balls.

    I saw this too:

    Don't suppose anyone saw those letters either, did they? Thanks.

  15. currer

    currer Senior Member

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    I think people are frightening themselves unnecessarily.

    A press release can be as little as a letter to a newspaper in response to an article. and we discuss those here all the time.

    All you would need to do would be to edit and combine some of these posts, and put into the form of a letter from an ME advocacy organisation. - we have to think of a name.

    The text of the letter can be discussed here in the normal way

    Why cannot the discussion be public? I think that would be an exciting innovation reflecting the new accessibility the internet offers for people to share ideas in an open and egalitarian way.
  16. currer

    currer Senior Member

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    The AfME letter is a bit wierd. It seems to be promoting the false narrative about people with ME.:thumbdown:
  17. alex3619

    alex3619 Senior Member

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    AFME is always a little strange in my opinion, they have a history of strange. They are being ultra conservative on these issues, I think. That can be a good thing or a bad thing.
    currer likes this.
  18. ukxmrv

    ukxmrv Senior Member

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    AFME has had a lot of criticism from ME patients in the UK. This has included complaints to the Charities Commission.

    It may be that they would also want to paint their detractors as militants etc.
    currer likes this.
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It is a basic tenet of good communication, that one must understand the audience one is addressing. Simply getting up in public and addressing ‘the crowd’ in the hope that someone will a) understand you, b) find your communication to have validity and c) for that someone to be an individual capable usefully carrying one’s message forward is vainglorious. What happens at best is you speak to people who are just like you – this is fine for ‘rallying the troops’, but hopeless if one is looking to speak outside one’s own narrow sphere.
    I think that is a very reasonable challenge – however it skirts around the fundamental problem that effective advocacy has to come from a consistent and well defined philosophical base. The first thing that PR people and marketers do when drawing up a campaign is set out what are the values of the person/business/organisation/person/product/idea they are seeking to promote/sell. The 300 plus posts on this thread alone demonstrates that there is very little in the way of any single core value – on which:
    Something I’d view with utter horror – the last place to take M.E/CFS if one is looking to achieve scientific and political credibility is the insanity of the of alt.med or the Fox News of soft left obsessionism (HP). This goes to the heart of the question of what is being sought ? Is it simply to wave a flag, or is to achieve change ? The two things are not the same. If change is sought then one has to ask what is (are) the audience(s) that need to be engaged with, and in consequence, what audiences are to be avoided ? Attenuation and tarnishing of ‘the message’ has to be consistently watched for if it is not to be subsumed into a mass of competing messages – where you ‘speak’ has as much relevance as ‘how you speak’ and ‘what you say’.
    Churnalism may be a growing feature driven by cost pressures, but it would be a mistake to think that media releases are ‘loved’ – the Internet has made publication of releases a mass activity, such that the thousands flooding media operations in-boxes every day are now be machine selected – rather like spam. What is absolutely key is the ‘authority’ of the authorship and the profile of offered commentators (journalists still like to have a quotable individual who is available for interview). Having legally constituted organisation certainly helps in developing a presentation of authority but unless there’s a ‘sexy’ (plenty of hits on google !) name to go with any quotes one is looking at maybe one release in a thousand actually getting picked up.
    Which addresses the sexy name issue – but the PR people at the institutions those people work are not going to give anyone else free reign to enlist their clients. A very large degree of trust has to be developed before such things can happen, and that takes time and professionalism. There are always rent a mouths of course – people who should be avoided at all costs. I know there are favourites for some readers here so I’ll avoid naming them, but there is always an issue of questionable ‘representation’ when people are recruited to talk authoritatively about a cause.
    A release by definition is not a letter. It has a specific recognised format designed for the needs of busy journalists – further for a release to have validity in the eyes of a journalist it would need to be ‘representative’ of some entity or to be notably purposeful on the part of an individual( winning a prize, starting business etc). Personal contact with a journalist is always possible of course, but one still needs to have a defined purpose – is it to provide information which the journalist would welcome, is it to challenge the editor on something that has been published etc ? I’m afraid cobbling together forum posts will not be attractive to journalists in most circumstances and frankly, even if they were to get past the spam sorting juniors and interns, such a missive would likely only raise derision on the news or features desks and get the sender added to the permanent spam lists.
    My take on all the above is that what is really at issue is dissatisfaction with the existing M.E/CFS advocacy organisations – and the question really comes down to ‘How do we reinvent the wheel’ and make it work in the way ‘we’ want ? The reality is that another organisation will be just as ‘sectionalist’ as the existing ones are perceived to be, and will have no more guarantee of being effective. If the poisonous atmosphere that affects the interplay between the various M.E/CFS online forums is anything to go by, one would expect a new organisation to breed yet another further set of divisions and sectarianism. A more productive approach might be the production of a ‘common charter’ on M.E/CFS advocacy which everyone (organisations and individuals) would be encouraged to acknowledge as a guide to good practice.

    IVI
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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