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UK: Should ME awareness week and advocacy focus more on the need for research funding?

Discussion in 'General Advocacy Discussions' started by Cinders66, May 19, 2019.

  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Moderator note: This post and subsequent discussion have been moved from this thread:
    May 2019 - Awareness Week including Millions Missing

    Were any U.K. “protests” visibly demanding research funds from our state funders? I’ve watched a few videos where the “general picture” or life stories etc are the focus to raise awareness, I’m just surprised that protests aren’t more part of this than raising awareness. It’s action >> tangible effects/attention >>> change & progress I’m interested in. I realise being ill nearly thirty years I’m at the opposite end to some, particularly those able to do activism and clearly desperate in my posts... I still feel some organisers are at the stage of “wouldn’t it be great if our stories were heard” rather than what’s our five year plan to make definite progress in key areas and what can we do fo facilitate or even , dare I say in the ohsdo polite UK, force this.

    We had more events in the UK this year but less big press coverage, evidenced by the fact MEA didn’t have to mention it on their page at all this year, whereas other year significant media meant they could not ignore it. Is that really progress? #MEAction are saying give us money to Campaign and we will magnify that into significant research funds, but that isn’t happening and I don’t see why it should on the back of awareness raising days.

    What I see as really happening in the UK:
    1) wait to modify NICE
    2) wait for MRC to do what the hec they want, hopefully with at least a token crumb of funds to cover the next years
    3) wait for NICE & research to eventually change the nature and number of “CFSME” services
    4) wait for more research before name and criteria are improved

    One woman working on medical education.
     
    Last edited by a moderator: May 22, 2019
  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    We had MPs coming out for MM events which is a step up on previous years.
     
  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    That is good but my questions would be are those MPs being organised in a meaningful way such as an APPG? What is the plan, post parliament debate, given that the ministers response was status quo will have to do as researchers aren’t interested? If the “protests” aren’t reaching national media , are they in any way capable of affecting change from the establishment or purely useful in educating some of the public?

    My view of the two main Charities who have connection with the most sufferers is that they’re now oppressive forces in their own right because of their insistence on only working through conventional establishment channels and at a time frame dictated by the establishment which is the speed of one pace forward per decade. By ignoring #MM they confirm that They won’t facilitate change by leading patients in campaigning for it. We don’t have any campaigns from them on research funds, services or criteria. I realise NICE change is seen as pivotal moment for us but other than that, I can’t see anything moving, it’s just the horrible waiting inaction whilst they assure us they really understand our pain. I can’t wait patiently after years of neglect and believe its that type of language scandal neglect, justice that our charities should be using in protests rather than an inching “forward ME” with the year just marked by a series of inconsequential formal meetings behind closed doors. I had hoped #MM was going to really be able to transform UK but not there yet, The film unrest was supposed to be the start of radical campaigning movement but I feel as much kept in a box as ever. We need #MEAction to be in direct touch with MRC as they are with NIH, hopefully with the same clear demands.

    Sorry gone abit off topic in rant.
     
    Last edited: May 21, 2019
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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    The 2 constituents who spoke with the M P who came to our event asked him to get involved with Carol Monaghan and are following up with him. He wants to meet up with our group too. We are going to see if he will get together with local MPs from his party or ideally invite all MPs from our area to a meeting so we can brief them and hopefully put them in contact with constituents who have ME. So we are trying to get the most out of this contact we have made. It is a process. If we hadn’t had the event we probably wouldn’t have made the contact. It’s about increasing visibility and using that to get messages across to people like MPs. Nothing happens overnight and without effort.
     
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  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Thanks for explaining that. That makes sense to build up allies through visabilty. I still think In the USA that was concurrent with very targeted action directed at the NIH with numbers, petitions, meetings etc on research funds. In U.K. I’ve just seen “demand for research funding” which seems to be more targeted at the government but is quite vague, is it the government we are wanting special measures from rather than MRC ? How much etc. ...

    I am not at all disrespecting the people who are using the energy they have to physically campaign, it’s great, i was very enthusiastic in my limited capacity at the start, I just feel there’s been differences of approach uk versus USA and outcomes too, with the protest elements more diluted into awareness raising here and progress on funding, unfortunately zero. I had thought in 4 years is it, to be further forward. We are hampered over here obviously by BPS dominant, no IOM report, and a fragmented opposition when it comes to advocacy so USA had those advantages but they seem prepared to call out the nih over there yet I’ve not seen MRC mentioned.
     
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  6. Trish

    Trish Moderator Staff Member

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  7. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Sure but I’m talking about highlighting the failure of funding bodies (to spur proper recompensing action from) & lobbying for a well funded , wide ranging research strategy encouraged by MRC and possibly government intervention with money too. That quote on the genetics study, from a non patient CMRC scientist isn’t a protest or Lobby on funds but a reasurance to patients everything is now ok. But is it ? In the USA for nih there’s call for serious committed funds and action to fund the field in diverse areas (via centres of excellence), the neglect is highlighted with stats of current and previous spending versus what’s fair/needed etc.

    A uk genetics study was talked of as early as 2009 by Stephen holgate, if it eventually gets funded ten years on after not much else, and nearly 20 years after a cmo report calling for a proper research strategy I believe, I don’t personally consider that MRC “CFS “ “job done”. The focus this year of #MM UK was supposed to be demanding biomedical research funds, if we are just happy to wait for the MRC to fund the genetics study that’s been in the pipeline for years when they choose, we might as well not “protest” at all on funding but focus elsewhere.

    In just last 3-4 years Norway, Canada and Australia have put up research incentivising money, whilst the genetics ones taking simply ages, I haven’t agreed with long “lulls”with the only focus on one project as if nothing else needs doing or could be done over here. Chris P is new in the field and not Ill and clearly thinks a few years settling on a final big project and funding is fine, maybe it would be in other contexts such as MS, where their charity is currently funding 50 odd other projects but not imo in our context.
     

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