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Communications support: Graphics, writers, websites etc.

Discussion in 'General Advocacy Discussions' started by PeterW, Aug 26, 2021.

  1. PeterW

    PeterW Established Member (Voting Rights)

    Messages:
    34
    Hello all,
    Many will not know me, I am part of a few groups campaigning for better recognition of ME and more biomedical research into the condition.

    I am now part of the very small team at Forward-ME, who co-ordinate shared activities between the main ME charities. I am working on a mixture of things, mostly in the comms area, I am a volunteer.

    It is clear to me that a significant issue is resources and skills: the charities are trying to do as much as they can but are limited by low staffing, and volunteers who are doing what they can while trying to manage their own illness.

    We are now trying to improve our comms. I wanted to reach out to the community and ask if there are any people with technical and professional experience in this area, specifically:
    • writing
    • graphic design
    • website development
    • email marketing
    If you have professional experience in these fields and would be able to support on any of these areas, I would be extremely grateful.

    Thanks,

    Peter
     
  2. Trish

    Trish Moderator Staff Member

    Messages:
    52,285
    Location:
    UK
    Hi @PeterW, welcome to the forum. Good luck with finding more volunteers. I hope you find some useful helpers.

    We have the same problem as all the other ME organisations - with most people with ME at their energy limits doing the things the need to do to manage their daily lives, it's hard to find people able to volunteer, and there are always more things to be done than people to do them, so what volunteers we have get overstretched.
     
    EzzieD, MSEsperanza, ahimsa and 9 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,453
    Location:
    Canada
    For graphics it may be worth reaching out to https://twitter.com/winstoncb, he's already regularly doing graphics and they are high quality. Not sure if he could do much more but he's clearly a professional.
     
    MSEsperanza, ahimsa, Dolphin and 2 others like this.
  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,857
    Location:
    betwixt and between
    Hi @PeterW , welcome to the forum.

    I saw your question on Twitter.

    I'm not on Twitter myself so hope it's OK to reply here.

    It seems that you have a 'fresh view' and I think that is something to be welcomed in ME advocacy. Also, I think it's good that you ask for feedback.

    S4ME may seem a bit overwhelming for newcomers, as well as the most important source on news about ME, @dave30th 's Trial By Error Series on Virology Blog.

    It certainly was overwhelming for me when I first came here and asked for the best article about the PACE trial that people new to the topic could understand.

    So for people new to the forum and mainly interested in advocacy I would like to recommend to read some of the S4ME submissions to understand the forum's approach:

    PACE trial:

    https://www.s4me.info/docs/PaceBriefing3.pdf

    Chalder Fatigue Questionnaire:

    https://www.s4me.info/docs/CFQ-Critique-S4me.pdf


    Measures of PEM:

    https://www.s4me.info/threads/s4me-...osed-measure-of-post-exertional-malaise.2220/


    Comment on the draft NICE guideline (December 2020):

    https://www.s4me.info/threads/scien...s-guideline-consultation-december-2020.18281/


    For general questions regarding advocacy and communication, perhaps those threads could be helpful:

    https://www.s4me.info/threads/usefu...ychological-and-biomedical-me-research.21934/

    https://www.s4me.info/threads/non-e...omedical-and-psychological-me-research.18266/

    Another potentially useful thread (that could do with some updates) on the history of ME research is this one:

    https://www.s4me.info/threads/the-d...ks-draft-discussion-thread.16349/#post-280885

    (Starting with the point about connections to the insurance industry).

    If you have any questions, S4ME folks are usually very helpful. If it takes longer sometimes until you get answers, it's just because people are busy fighting against too much harmful nonsense being imposed upon pwME.

    (Edited -- links)
     
    Last edited: Aug 30, 2021

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