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

[Ravn]

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.

Up to now, sometimes I have not known where our money was going to come from to continue the research even a week or two ahead [...] I am very proud of what my small team has achieved on such a small ‘uncertain’ budget.

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:

In 2019 the Tate Research group is focussing on ME/CFS patient studies in two important areas of research.

(A) Energy production

We are determining in ME/CFS patients and age/gender matched healthy controls the complete bioenergetic profiles of the cell’s energy powerhouse (mitochondrion) and its effectiveness to produce energy. We will also investigate the levels of an important component of this energy production, CoQ10, in plasma and immune cells and whether the status of this biomolecule can be improved by the freely available supplement MitoQ. To assess whether MitoQ as an antioxidant improves energy production in the cells, it will be added to pure immune cells isolated from patients, and as well we will determine how concentrations of CoQ10 change in the plasma and cells of patients when they begin to take the supplement. In both cases we will determine if there is an improvement in bioenergetic profiles in response to MitoQ. Production of destructive reactive oxygen species, and the effectiveness of MitoQ as an antioxidant to mitigate this thereby improving energy production will be assessed.

Our studies groups will include samples taken from (i) our original Dunedin Study patient group, (ii) a new patient group recruited specifically for bioenergetic analyses with our new Seahorse
bioanalyser, (iii) patients who have been in a relapse/recovery study group, (iv) A pre- and post exercise study group who have been documented to have experienced post exertional malaise (exercise intolerance) at 24h.

(B) Epigenetic code dynamics

Our recently published study of the ME/CFS patients ‘expressed gene profile”

(transcriptome) compared with age/gender matched controls of the Dunedin study (Sweetman et al., International Journal of Immunopathology and Pharmacology –January 2019) suggested the expression of many genes encoding products of biochemical pathways are depressed, complementing the conclusions of a 2016 Stanford University study of plasma metabolites that gave data indirectly suggesting ME/CFS patients have ~20 biochemical pathways functioning at a lower level than normal. One way this could happen is if there were a change in the dynamics of the epigenetic code – this encompasses the methylation tags on DNA around the on/off switches for the expression of genes. We are examining 30 million sites in the DNA genomes of patients in the Dunedin study, and of a second study group of patients undergoing relapse /recovery cycles, using reduced bisulphite sequencing. This will enable us to deduce which individual genes are affected, and how that translates into lower efficiency of biochemical pathways that might be sustaining ME/CFS.

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.

 

[Hutan]

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

About the MitoQ study

No! MitoQ does not fund any of our studies. I wanted to do an independent scientific study that was completely objective as to the nutraceutical's effectiveness or not.

The study is motivated by the following background
(i) the compound was developed by Michael Murphy of my department and Rob Smith of Chemistry in the early 2000’s and so I do have an “emotional connection” to it.
(ii) most importantly if there is a chance of a nutraceutical already available giving immediatebenefit to ME/CFS sufferers, even if only a subgroup, I wanted to try to validate that!
(iii) anecdotal evidence from people to me is: some believe they have had benefit, others say have not had any benefit, and one person told me she had no benefit but when she went up 3 fold in daily dose it had a remarkable response ( from being bedridden to being able to get up and have a restricted life).

So we wanted to see if we could get any independent scientific evidence to support a benefit, and whether it was dose responsive

I should note that the MitoQ is only part of the bioenergetics project - and is part of a 4th year Medical Student’s specific project for her BMed Sci (Hons) year, so is only a limited part of our year’s budget. We are also interested in CoQ10 itself - MitoQ would only work as an antioxidant to protect the mitochondria by removing super oxygen species ( but that may be very beneficial for ME/CFS patients) but CoQ10 itself can take part in the actual energy production directly ( electron exchange) - and we want to see if, when added to patient’s lymphocytes it shows any improvement in the bioenergetic profiles.

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.

 

[Sunshine3]

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

 

[Inara]

What's mitoQ?

anecdotal evidence from people to me is: some believe they have had benefit, others say have not had any benefit, and one person told me she had no benefit but when she went up 3 fold in daily dose it had a remarkable response ( from being bedridden to being able to get up and have a restricted life).

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.

 

[Dolphin]

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.

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.

 

[Hutan]

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

New Zealand’s top science and technology honour, the 2010 Rutherford Medal, has been awarded to internationally renowned molecular biologist Professor Warren Tate FRSNZ from the University of Otago.
The President of the Royal Society of New Zealand, Dr Garth Carnaby, says Professor Tate has had a ‘stellar career ‘which continues to flourish, with groundbreaking discoveries in understanding fundamental elements of cell biology.

“His work has made a huge contribution to health research with potential applications for preventing and treating HIV-1 and neurological diseases such as Alzheimer’s.

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.

 

[Ravn]

What's mitoQ?

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:

MitoQ would only work as an antioxidant to protect the mitochondria by removing super oxygen species ( but that may be very beneficial for ME/CFS patients) but CoQ10 itself can take part in the actual energy production directly ( electron exchange)

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!

 

[Inara]

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!

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

 

[Hutan]

I’m happy to share information and advice

Yes, please, in the Advocacy forum somewhere?

 

[Dolphin]

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.

 

[Tom Kindlon]

In case anyone wants to share the appeals for funding:

 

[RoseE]

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

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

 

[Ravn]

In case anyone wants to share the appeals for funding:

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

 

[Ravn]

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.

Does Van Elzakker know this?

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.

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...

The Australians have achieved a lot, including specific research funding, by lobbying their MPs, a similar approach might work here.

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?

we need to get a few things sorted first, like updating the local patient support group's website

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)?

and consolidating the local health authority's awareness of the need for ME/CFS research.

That sounds a sensible strategic move, but how would you go about that?

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.

Excellent suggestion. Hello Australia

 

[Andy]

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.

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

 

[Hutan]

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)?

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.

and consolidating the local health authority's awareness of the need for ME/CFS research.

That sounds a sensible strategic move, but how would you go about that?

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.

 

[Ravn]

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.

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

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.

 

[Simone]

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

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.

 

[Hutan]

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.

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.