NZ: ANZMES research grants & scholarships (starting 2023)

2023 application round is open 31 May - 31 July

press release: https://anzmes.org.nz/grant-and-scholarship-programme/

programme description: https://anzmes.org.nz/research-funding-programme/

 

"This year two Grants valued up to $25,000 are available, and four $5,000 Scholarships."

So that makes $70,000 per year? Not bad for a New Zealand which has around 5 million inhabitants.

 

Not privvy to the details but pretty sure this is the result of ANZMES receiving a very significant bequest from a pwME who expressed the wish that the money be used for research. So a bittersweet announcement (if my guess is correct I knew the pwME)

 

I wonder whether the bequest had the requirement that the research has to take place in New Zealand. In such a relatively small country, there might be few applications some years and poor research could end up getting funded.

Edited to add:

That’s good.

 

Thanks very much to this individual for remembering the ME/CFS cause in their will (I vaguely recall talk that someone had left a very significant bequest, worth in the region of maybe NZ$900,000 (??)).

I get the impression not that many people with ME/CFS leave much if anything to ME/CFS in their wills. People with ME/CFS may be relatively cash strapped when alive but could still leave behind a substantial estate e.g. their property and its belongings.

 

The ANZMES annual research grant & scholarship 2024 application period is now open; it closes 31 July 2024.

Application details at link
https://anzmes.org.nz/research-funding-programme/

 

It would be so helpful if someone could put in an application based on doing research that documents the harms from GET/CBT & LP in the NZ context. It is the key piece of data that is missing here and until we can adequately & robustly demonstrate that not only are these treatments ineffective but harmful they will continue to be offered.
In my son’s case the exercise programme provided by the hospital physiotherapist was technically not GET as per the PACE Trial but it was rehab type incremental HIIT exercises as if he was deconditioned. He also had sessions with psychologist and GP gave me a brochure for The Switch. No pacing was suggested.

 

Press Release – ANZMES Awards $25K Grant and $10K in Scholarships to Advance ME/CFS and long COVID Research 2024

Doesn't say how many applications they had for the 2 grants and 4 scholarships theoretically available. They only awarded half of those, whether due to lack of applications or due to lack of quality applications is not clear

Grant

Scholarship

Scholarship

https://anzmes.org.nz/press-release...-advance-me-cfs-and-long-covid-research-2024/

 

If I recall correctly, the three times the annual grant has been given out now, it has gone to non-biomedical research. While such research can certainly have value, my preference is that it wouldn’t dominate funding like this. I think a problem could be the limit of NZ$25,000 = €13922 = ST£11,672 = US$15,297.

 

Yeah, I noticed this, too.

Speculating if the reason is lack of suitable applications. The ME research ecosystem in NZ is so limited there may not be any obvious pathways - like qualified supervisors - for Masters or PhD students to follow outside the couple of very small existing teams - and those are already being supported by ANZMES separately so there may be issues of conflict of interest, or perception thereof, of awarding additional grants or scholarships to them. Or maybe their leaders are part of the committee deciding on applications so again, conflict of interest

To be clear, I don't know any of this, just speculating. But if my speculations are somewhat close to the truth, how could this be addressed?

I wonder if giving out fewer but larger grants would help? The scholarship amount seems about right but maybe a bigger grant? for example 1 grant of up to $60,000 - if justifiable project costs can be demonstrated - and then only 2 scholarships of $5,000 each. Still doesn't solve the issue of lack of suitable supervisors

Based on the publicly available info two of the current projects look ok to me.

The food insecurity issue needs documenting. I hope they include the problems very severe pwME have in accessing feeding support (it doesn't say in the project description). I also like their sideline of gauging interest in a registry. I'm not sure if a registry would be worth the resources that would need to be spend on it but I think it should be explored. Though the investigators appear overly optimistic when it comes to what a registry can achieve. They're quoted as saying "Respondents will also be asked if they would like to be included in an ME/CFS Registry – it is essential that we start to count how many people are living with ME/CFS." While I agree with the sentiment I struggle to see how a voluntary registry could give us any good prevalence data (for discussion on patient registries, see this thread)

The Masters psych project looking into supportive care could be worthwhile especially if it includes looking at how to provide such care in culturally appropriate ways (it doesn't say in the project description). If the student goes on to become a practitioner competent in helping rather than harming pwME, and if she then goes on to advocate among her future colleagues, that would be a win.

I'm baffled though by the other Masters project. Just what is another systematic review of exercise in ME going to achieve at this point? There is no new "high-quality evidence" on which to base any exercise recommendations

 

Are they financially supporting other projects? Although I don’t live in NZ, I’ve been a member a number of years now. I don’t recall seeing it being discussed in their newsletter or in their occasional emails in that time (though I think I haven’t read one or two of the recent editions). All I recall seeing in that time are the details to donate directly to the Tate team on their website.

 

I may be misremembering but doesn't Prof Tate always have ANZMES on the list of funding sources on his slides?

Now you mention it, I don't think I've ever seen any financial statements from ANZMES (or MEISS for that matter). Other organisations my husband or I are members of send them out prior to an AGM so people have a chance to think about them. I've never attended an ANZMES AGM but presumably they would have to present their financials then, including any donations made? As a member you may be able to request a copy if you're unable to attend the AGM?

 

I’ve now checked the NZ charity register.
There are some financial accounts there.
https://register.charities.govt.nz/Charity/CC30391

Research expenditure in recent years (I didn’t go all the way back. Overall income was relatively low each year so my guess is historically research contributions were fairly low. Then in a recent year they got the bequest of close to one million)


Tate
$1236 + 2391
10,000
10,000
75,000
30,000

Anna Brooks
49,500
Then back to 0

ME/CFS Auckland
5000

Stroke Foundation
575

Kathy Foley grants
1419
727
(Not sure what this is? Sometimes money comes from this)

 

Duh! Why didn't I think of that?
Thanks for going through these. So that confirms they have been making donations

I found this tucked away in the 2021 performance report (word search 'Kathy'), it's probably in the other reports, too, but I only looked at the one

I may be mistaken but together with how 'Kathy' appears in the financials this looks like somebody left a bequest earmarked specifically for the purpose of assisting with obtaining diagnosis, I'm guessing maybe travel or private consultation costs or something like that

 

Another word search, this time for 'scholarship' unearthed this in the 2023 report

So in 2023 they had 7 applications for a total of 6 grants/scholarships yet they only funded 2 grants, 0 scholarships.

I find this simultaneously reassuring and dispiriting. Reassuring because it shows they're not prepared to fund projects just because someone applied. Having said that, I still don't understand why the 2024 "systematic review to evaluate the safety and efficacy of exercise programmes for ME/CFS patients" was selected, what am I missing? Dispiriting because it shows just how limited the ME research ecosystem is in NZ if even with $$$ on offer you still only get so few suitable applications

Unanswered questions:

• What sort of projects were the rejected ones?
• On what grounds were they rejected?
• What sort of feedback did rejected applicants receive that may help them do better next time, or at least walk away with a better understanding of ME rather than negative feelings towards anything ME?

Answers to the above might help with the most important question: what can be done to encourage more and better applications in the future?

 

Some ideas (not really thought through, intended more as discussion starters)

• change the allocation of the available $$$ so there's the possibility of one significantly larger grant within the same total, this may attract more biomed researchers with higher lab costs
• select one specific topic for the year - e.g. epidemiology or genetics - and do a hard marketing push in the relevant departments including in indirectly relevant ones - e.g. machine learning or computer modelling could be applied to genetic databases; identify and educate potential supervisors in those departments (a specific annual focus doesn't mean you couldn't accept applications from other areas)
• offer pre-application workshops, coaching sessions or similar, these could be group ones to encourage collaborative applications, or they could be individual ones to gently but firmly guide potential applicants away from repeating the many errors of past studies and towards methodologically sound approaches to relevant study questions, some sessions could also be targeted at potential supervisors providing them with reliable sources of info about ME in general plus info about accessible databases like the DecodeME one that they could steer their students towards

 

As I recall, they set a limit of two grants per year, for better or worse.

 

And sleep hygiene/reducing rest.

if they are still being forced in people anyway then the ethical but has been blown by someone else anyway.

 

And maybe offer support at an earlier stage ie before submitted and during their conception to ‘what will the project be’ process ?

 

Haven't watched yet

https://www.youtube.com/watch?v=2ZrvZG-rf4s