Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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New ME Centre in U.K.

Discussion in 'General ME/CFS News' started by Nielk, Aug 10, 2011.

  1. Nielk

    Nielk

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  2. Sasha

    Sasha Fine, thank you

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    Thanks for posting, Nielk - I hadn't seen this. I was confused about who they are, though - they are supporting an Invest in ME initiative but don't appear to be Invest in ME themselves, as far as I can tell from the website. I think if they want donations it would help if they made it clearer where the donations are going - having clicked on a few links it ends up on an Everyclick page where eventually there's a link to the Invest in ME logo. I had a look on the IiME site and the Let's Do it For ME campaign appears on one of their pages (again a bit of digging).

    So they're clearly legit - I wish them well and hope they might do a bit of editing to make their bona fides clearer!
     
  3. Enid

    Enid Senior Member

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    That is good to know Nielk - thank you very much. It looks as if the plan initiated by Invest in ME is on it's way now.
     
  4. Nielk

    Nielk

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    I think it's great news for the U.K. people. Hope it comes to fruition soon!
     
  5. justy

    justy Donate Advocate Demonstrate

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    Thanks for the link Neilk -this is pretty big news for the U.K. I had heard about this project last year, but i cant remember all the details -i know they were trying to get the teaching hospital in Norwich to do the treatment side whilst the University of East Anglia would do the research. Unfortunately the NHS wont play ball (surprise surprise) and so they cant use the hospital, it looks like it will all be located at the uni.

    So many questions tho -does anyone remember who the specialists are that were going to be involved or how much money they need to raise or how long before they are able to see patients?
    We need to get behind this big time - its a great source of hope for the beleagured U.K patients.
    Justy x
     
  6. Wonko

    Wonko Senior Member

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    The other side.
    93 miles by road from me, on a good day, in a mild period, I might be able to do that.
     
  7. eric_s

    eric_s Senior Member

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    I agree, Sasha. I hope the donations go directly to Invest in ME, not because i don't trust the people behind the campaign, but because i think only this way can people be confident enough to donate in large enough numbers.
     
  8. Sasha

    Sasha Fine, thank you

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    Hi eric - the people running this project aren't giving their names, which I completely understand when our illness is so stigmatised here in the UK, but that really does mean that they have to link to the IiME "mothership" so that people can see that it's a legitimate project. I contacted them to say so, so I hope they'll edit their pages to make that clear and include a link.
     
  9. eric_s

    eric_s Senior Member

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    Well, to be honest, i think they should give their names, but of course i'm from outside. If the situation is really so bad you have to be scared to mention your name, i think your organisations should do a campaign doing exactly that, everybody showing their photos with names. But it needs to be a large enough number of people, of course. It's bad enough we don't get the help we need and deserve, but it can't be that citizens have to hide their identity, this is your country, after all. Off topic to this thread, though. The centre is a great idea and i hope they will have success with it.
     
  10. Sasha

    Sasha Fine, thank you

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    Honestly, I wouldn't want my name associated with ME on the internet, for several reasons. If I meet someone new socially, it's not unlikely these days that they might google me and I want to be in control of whether, who, when and how I tell about my illness because not everyone is able to handle it well and many people in the UK assume it's a mental illness or malingering. Also, if I ever recover and apply for a job again, google could again show my potential employer my former diagnosis before I even have a chance for an interview and I think that that would be the kiss of death for my job prospects.

    I have a great deal of respect for those who do go public in the UK (or anywhere) with their illness and the charities have found some people willing to be the human face of ME but I think there is a great deal to be lost by going public with it at this time and once it's out there, it's out there. You can't get your privacy back once you've lost it. It's like the middle ages here in the UK for people with ME and we're the new lepers.

    So, I support them in their anonymity but I really hope they insert those links to the IiME!
     
  11. justy

    justy Donate Advocate Demonstrate

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    If you click on the tab that says A UK CENTRE it explains what is going on in detail. This is definately an Invest in M.E project with the backing and support of the WPI. Lets do it for me is a spin off group aiming to raise money for the centre. It looks great, with an emphasis on helping the severely affected to be able to access services and treatment and be included in research as well as a translational research approach. Im so happy for this news.
     
  12. eric_s

    eric_s Senior Member

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    The thing is that i believe we will not get better unless they find out how to treat this illness successfully in most cases. And doing this needs a lot of money and also a change in attitude in many places, like universities, politics, etc., i guess. And as long as people hide, this change will probably never happen, unless it comes from outside of a country, which in the case of the UK will probably be what happens. There is somehting to lose, i agree, but i don't see how one could win without going public.
     
  13. Sasha

    Sasha Fine, thank you

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    It's cost/benefit, I suppose, and each of us will have different factors playing into that. There are people in the UK who go public - it's just that my personal choice is not to do so and I can understand why the IiME supporters doing this project wouldn't.

    There is also a third issue that I didn't mention, and that is the threat to incapacity benefit. I don't find it unlikely that if people doing such projects gave their names, the DWP might judge them as being fit for work and stop their disability benefits. The DWP looks for the flimsiest of excuses to do this (I was once classed as fit for work by a DWP assessor despite having been confined to bed for several years and needing to have my food cut up for me because I was too weak to do it myself).
     
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    There are certainly valid reasons for people not to give out their identities on the Internet, however when one is endorsing an activity, particularly one where donations are being sought, it is important that the public has confidence in the validity of the endorsement. The way this project is being promoted seems unnecessarily coy; IiME clearly accepts responsibility for the project, as it makes clear in its most recent Charity Commission return so I dont understand why there is any need for anonymous endorsement, something which only serves to confuse the situation.

    I do think there are some problems with the proposal though. The most obvious difficulty arises from the stated involvement of the PCT (Primary Care Trust), the present Government is intent upon the abolition of PCTs in England and replacing them with GP based commissioning ; this is not a simple governance issue but impacts upon control of buildings and equipment . The Governments plans are in flux, having been attacked by a wide range of health interests, but the Governments position is that it intends to forge ahead, and realistically any plan for an M.E centre of excellence ought to address likely re-organisation scenarios.

    Other problems arise from doubts about future funding of the NHS in England and in the UK in general, not only are there heavy downward pressures on income, while costs remain unrestrained, the commissioning regime envisaged by the Government may render any notion of a National Centre unachievable. Lower costs are achieved through long term contracts, which are for practical reasons of patient transport, preferentially set up on a parochial basis. This is something familiar to M.E/CFS suffers, many of whom have sought NHS treatment at particular centres, only to have funding refused because it is out of area and an alternative is available. GP commissioning has been presented as offering an end to out of area rationing however the new system may actually make the position worse, as the GP will be directly under financial pressure and therefore not even willing to make an out of area referral, let alone go so far as to raise a budget for any out of area/out of contract assessment/treatment. So even though a Centre could be created in East Anglia, it may not even be able to attract commissioning support from outside the commissioning area within which it operates, let alone distant parts of England, and even less likely N.I, Scotland or Wales.

    A couple of lesser points also need to be addressed. IiME is a well established Charity, however it has no history of funding a large capital project, 100k is double IiMEs most recent annual account total so one would hope to see a very clear cost breakdown for the Centre project. A figure rounded to tens or hundreds of thousands is always somewhat suspect because it looks like a figure grabbed out of the air it may not be the case with the proposed Centre, but some justification of why it will cost 100k and not for example 50k or 500k needs to be given if potential donors are to have confidence in the project.

    IVI
     
  15. Enid

    Enid Senior Member

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    IVI - I note you are full of criticisms - do you not know that those in Invest in ME are equally sufferers and their families and have brought to the UK in annual conferences the very best in researchers despite all the odds in the UK medical establishment who turned them down over years. Whatever they do/will do can only be for the very best for ME in the UK.
     
  16. ukxmrv

    ukxmrv Senior Member

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    I think IiME are very aware of the problems. The Romford centre had patients referred from all over the country and even then some PCT's put up a fight.

    ME patients have been joining as many of the new organisations that they can (the patient focus side) in order to try and influence the changes coming.

    I'm sure that they and IiME will be thinking of all these obvious issues.
     
  17. Enid

    Enid Senior Member

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    I'm sure they won't - PCTS and all the rest not very capable or informed - we really must learn in the UK those who have and do - small and against all odds know and fight for the real recognition of ME. From someone with a whole range of referrals.
     

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