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Otago University (NZ) is fundraising for Prof. Tate's team's ME research

Discussion in 'Fundraising' started by Ravn, Mar 29, 2019.

  1. Ravn

    Ravn Senior Member (Voting Rights)

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    The University of Otago is currently asking for donations (NZ & International) to support the work of Prof. Tate and his team: https://alumni.otago.ac.nz/donate/myalgic-encephalitis

    If you can't contribute financially, maybe you could share the link on your FB, Twitter, etc.

    The website above only states that donations are to support research into ME, without any further detail, but Prof Tate has kindly provided some additional information, and permission to share.

    Research into ME is not a priority in NZ and funding via the mainstream channels is difficult and uncertain, hence the drive for donations.
    Despite the funding challenges they have managed to do some interesting work. Two recent publications:

    A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS
    Angus Mackay, Warren P Tate in International Journal of Immunopathology and Pharmacology (Dec 2018) https://doi.org/10.1177/2058738418812342

    discussed here: https://www.s4me.info/threads/a-com...ry-paradigm-for-me-cfs-2018-mackay-tate.7187/

    Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome
    Eiren Sweetman, Margaret Ryan, Christina Edgar, Angus MacKay, Rosamund Vallings, Warren Tate in International Journal of Immunopathology and Pharmacology (Jan 2019) https://doi.org/10.1177/2058738418820402

    discussed here: https://www.s4me.info/threads/chang...-cohort-with-me-cfs-2019-sweetman-et-al.7694/

    This latter study has led to the team now collaborating with Prof Montoya at Stanford on a study on cytokine abnormalities.

    Their programme for 2019, for which donations are being sought:
    I've attached a pdf with some additional responses from Prof. Tate.

    I for one will be diverting some of my donation budget their way this year. We can't afford to lose any ME research teams, least of all one containing some young scientists with good brains, judging by their recent papers.
     

    Attached Files:

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  2. Hutan

    Hutan Moderator Staff Member

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    I had a question about the MitoQ study; it's well answered in part of the attachment to Ravn's post.

    I agree, Professor Tate's team is worth supporting. I feel that we could probably get some government support for them. The Australians have achieved a lot, including specific research funding, by lobbying their MPs, a similar approach might work here. If we don't ask, we won't know.
     
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  3. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    @dave30th a visit to New Zealand would certainly be worthwhile this year if you could manage it
     
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  4. Inara

    Inara Senior Member (Voting Rights)

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    What's mitoQ?

    I have to admit I made a comparable experience with Q10 (Ubiquinol). I didn't feel anything with 50mg Q10 daily. Some day my doctor wanted me to take 200mg daily. I was very sceptical because up til then no supplement really made a change (but who knows, maybe they prevented getting worse), AND Q10 is expensive. But I thought, well, if it makes him happy and so he'll leave me alone with that stuff...And indeed, somehow sth. happened, nothing great. When I learnt that mito patients take at least 600mg Q10 daily I thought, come on, just go up, if it doesn't kill them it won't kill you. Indeed, I've had a further improvement (more "energy", PEM comes more slowly). It could be coincidence though (wouldn't be untypical for ME), so I will keep on observing for at least 6 months.
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    It might well be worth trying. But Australia had an advantage as there are a number of active ME/CFS research groups there. So they won’t necessarily have to fund one particular research group if they have a ring-fenced fund.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    Yes. But, on the upside, there's a relatively good level of awareness of ME/CFS with the Tapanui Flu outbreak still remembered. Prof Tate has a very good track record:

    Rutherford Medal
    And the Marsden Medal. ​

    Lyn Hodges at Massey University has done some work with CPETs. There's potential for NZ researchers to run a cohort of patients through research protocols conceived elsewhere in order to increase sample size e.g. NZ has the technology and skills to do the type of expensive brain scans that Van Elzakker was raising money for, but at a much lower cost. NZ has a great brain biobank for neurological diseases and a number of the people involved in the 1980's Tapanui Flu outbreak might consider leaving their brains to science when they die if that biobank was actively trying to build an ME/CFS collection.

    New Zealand is small enough and connected enough that it's relatively likely that a good proportion of people with ME/CFS will have personal connections with a politician who can make a difference. There's a couple of possible target MPs including a Minister in the region I am in, but we need to get a few things sorted first, like updating the local patient support group's website and consolidating the local health authority's awareness of the need for ME/CFS research.

    Part of my submission to the recent Australian NHMRC call for feedback on ME/CFS research was that there should be collaboration with New Zealand, allowing New Zealand researchers to participate in competitive funding rounds and partner with Australian researchers, and approaching the New Zealand government to make a contribution to a combined funding pool.
     
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  7. Ravn

    Ravn Senior Member (Voting Rights)

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    MitoQ: a very expensive antioxidant related to CoQ10 but working slightly differently. If I understand correctly CoQ10 may be better at increasing cellular energy and MitoQ may be better at reducing ROS. So depending on your personal situation one or the other may work (better) for you. Or not.To quote Prof. Tate:
    Only try if your finances are well in order though, a month of MitoQ at triple dose (like the patient you quoted) would cost about NZ$250. Ouch!
     
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  8. Inara

    Inara Senior Member (Voting Rights)

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    :eek:

    Yes, ouch! And I thought Ubiquinol is expensive...
    Thanks @Ravn for explaining. :)
     
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  9. Hutan

    Hutan Moderator Staff Member

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    Yes, please, in the Advocacy forum somewhere?
     
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Is there much fundraising for research in New Zealand? I don't recall hearing of many such events.
    Seems like it might be a good time to do things.
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    In case anyone wants to share the appeals for funding:

     
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  12. RoseE

    RoseE Senior Member (Voting Rights)

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    We have shared on our M.E. Awareness NZ facebook page.
     
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  13. Ravn

    Ravn Senior Member (Voting Rights)

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    :thumbup:
    :thumbup:
     
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  14. Ravn

    Ravn Senior Member (Voting Rights)

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    Does Van Elzakker know this?
    They appear to be focussing on neurodegenerative diseases. Worse, ME doesn't even seem to feature on the radar as a (partly) neurological illness in NZ. In all the years I've been getting the newsletters from the Neurological Foundation I've never seen anything about ME at all. And when I asked my neurologist (a clinician researcher) about the possibility of ME he said he knew nothing about it. Honest answer, if nothing else...
    With respect to research funding, what exactly could we ask our local MPs to do? I'm a bit vague on how research funding is allocated in NZ but I've always assumed it was fenced off from politicians' influence?
    Agreed, the website could do with an update - actually it had one: there's now a small button linking to the Otago Uni fundraiser - but why do you say this needs to be done first, before lobbying MPs? There's nothing really silly on it, is there (I've only skimmed, too much reading for me)?
    That sounds a sensible strategic move, but how would you go about that?
    Excellent suggestion. Hello Australia :emoji_wave:
     
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  15. Andy

    Andy Committee Member & Outreach

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    @Simone , not sure if you've seen this idea?
     
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  16. Hutan

    Hutan Moderator Staff Member

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    I was talking about the website of the patient group in my region - it's still talking about aluminium pots and microwaves and people who can't cope with the stresses of modern living. I feel hesitant to go to a local MP before we get that fixed as the first thing they will do if they are interested is go look at the website. We're working on it, so it won't hold things up much.

    A woman here wrote to the district health board, telling her daughter's story. And it landed on fertile ground and we now have a productive relationship. I think it is was her effort and persuasive writing and a large amount of luck that started it. And probably it has been taking a reasonable, realistic and evidence based approach and a large amount of luck that has maintained it so far.
     
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  17. Ravn

    Ravn Senior Member (Voting Rights)

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    Ah, misunderstanding. I thought you were talking about the ANZMES site. I can see now why you want to update your local site, we're all doing our cooking wrong :rolleyes:
    :thumbup:
     
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  18. Simone

    Simone Senior Member (Voting Rights)

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    No, I hadn’t seen that. Thanks for flagging it, Andy. There were many submissions (I can’t release the number yet, but we were pleased with the response), and read many, but wasn’t able to read them all. I’m not sure about the policy around this (sharing funds between the two countries), but I’ll see what I can find out. I suspect that NHMRC will not be keen on this idea. Grant money is so scarce in Australia, and difficult enough for Australian researchers to access sufficient funding, my guess is that this idea would probably be unpopular with Australian researchers and govt too.
     
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  19. Hutan

    Hutan Moderator Staff Member

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    You are probably right Simone. But I'd ask the Australian government 'what is it aiming to do, fund Australian researchers or solve ME/CFS?'.

    If the NHMRC extracted a contribution from the New Zealand government that was equitable in per capita terms of population, then there are more funds to be distributed and the funds go to teams judged best able to do useful science. Australia and New Zealand are a long way from other countries doing ME/CFS research and it's not a big field; it would be good if the governments facilitated collaboration. Most specialist medical colleges cover both Australia and New Zealand eg the Royal Australasian College of Surgeons.

    It's interesting to see the USA government funding UK research/research infrastructure such as the ME biobank. I wonder what made that happen.
     
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