New Zealand: ANZMES

[Ravn]

Re ANZMES becoming a trust, I just learned that the new law for incorporated societies will require Societies to get a significant proportion of their members to attend their AGMs - which just isn't going to happen for patient organisations. Apparently a lot of other organisations currently operating as societies are restructuring and becoming trusts for the same reason
So a trust it will be, by the look of it

 

[Hutan]

I just learned that the new law for incorporated societies will require Societies to get a significant proportion of their members to attend their AGMs

How do you know that @Ravn? I looked at the bits of the Act that I thought would be most likely to say that, and searched on 'quorum', and I couldn't see it. As far as I can see, Incorporated Societies have to have a constitution, and they can specify what quorum they want to have in that. Also, attendance can be via video or audio link.

87Methods of holding meetings
(1) A general meeting of a society must be held by a quorum of persons—

(a) being assembled together at the time and place appointed for the meeting; or

(b) participating in the meeting by means of audio link, audiovisual link, or other electronic communication; or

(c) by a combination of both of the methods described in paragraphs (a) and (b).

(2) This section is subject to the society’s constitution.

(3) See sections 26(1)(k) and 93, which provide for the constitution to deal with arrangements and requirements for general meetings (including the quorum, proxies, and voting by post or electronic means).

 

[Ravn]

Hearsay from someone who usually knows about these things (not ANZMES), I didn't check (and haven't been able to confirm any source since)

Whatever the quorum rules, if you want to influence the change in structure at this stage options seem limited

You could try to convince members to vote No to force a pause for further discussion. Or, if time permits, you could try to convince ANZMES to add a second vote for a pause and discussion onto the agenda, and then convince members to vote for that. No idea how you'd achieve this

And/or you could try to insert yourself into the process of drafting the trust deed. No idea how you'd achieve this either (ANZMES indicated there would be opportunity for feedback but didn't say when or in what form)

And/or you could try to get yourself appointed as a trustee. You guessed it, no idea how you'd achieve this

Not much help, am I

The actual SGM is on 2 November, 10.30am

Postal/online votes have to be in by 5pm 29 October

As I said in a previous post I would very much have liked to have been given the opportunity to discuss this change and fully understand its implications before being hit with the voting papers. I'm disappointed but not exactly surprised this didn't happen

I suspect the change in structure is a foregone conclusion. How it will play out in the long run will depend on the quality of the trust deed - so perhaps worth putting some effort into giving feedback there - and, crucially, on trustee appointments. In my experience, structure matters. A suitable range of skills matters (though these can to a degree be acquired or contracted out as needed). But what perhaps matters most is the right mix of personality types to avoid the extremes of group-think on one end and constant infighting on the other

Anna Brooks is currently on the committee, I hope she will consider becoming a trustee. There may be others who could be shouldertapped to put themselves forward in time, Mona Jeffreys could be good for example, and some suitable candidates may be more willing to take on a trustee role than a committee role. With a good trust deed and the right mix of people in place this restructure could be the kickstart ANZMES needs to become more effective than they are under the current structure. Can't pretend to be overly confident in such a positive outcome but stranger things have happened after organisational shakeups

 

[Hutan]

Yeah I'm pretty sure an Incorporated Society created under the 2022 Act can decide what a quorum is at their AGM. There is a Constitution Builder and, while there is a minimum on the number of Trustees/Committee Members (at least three), there's no such specification about the AGM quorum.

Clearly the current structure (Incorporated Society) doesn't work very well, on at least two counts

1) there's low engagement from members and the wider ME community, ANZMES say so themselves

2) I also suspect they're hobbled by clumsy processes like everything having to go through committee and so on. That's just me reading between the lines but in the SGM notice they go into some detail about how the new structure would allow them to work more efficiently

So there's definitely cause to consider whether a different structure would be better

I don't think those problems can be pinned on the Incorporated Society structure. I think, as you say, the organisation has suffered from group think, some past leaders who had an attitude of 'it's my way or the highway' and it hasn't achieved much (the latter not being all of its fault). The committee was way too big and it had a lot of people on it who weren't active. But, at least there was a small chance that if enough people cared, members could vote for change.

As far as I can see, the main consequence of the proposed new structure is that there is less scrutiny. I'd be interested to hear what the benefits are expected to be that a smaller, better committee would not have also provided.

 

[Ravn]

Some more info on the topic of trust vs inc soc that may be helpful (have only been able to skim)

First, confirming that no, apparently there's no specified minimum quorum

However, the act is interpreted as setting an expectation of a high level of active member engagement, e.g.

A written resolution is as valid for the purposes of this Act and the constitution as if it had been passed at a general meeting if it is approved by no less than 75% (or a higher percentage required by the constitution) of the number of members who are entitled to vote."

https://www.legislation.govt.nz/act/public/2022/0012/latest/LMS238718.html?

Also this

(d) recognise the principles that—
(i) societies are organisations with members who have the primary responsibility for holding the society to account; and
(ii) societies should operate in a manner that promotes the trust and confidence of their members

https://www.legislation.govt.nz/act/public/2022/0012/latest/LMS100813.html?

I'm no lawyer so can't meaningfully comment on the interpretation of the Act, just putting here for info

These two tables compare the pros and cons of the different legal structures

https://communitytoolkit.org.nz/cho...cture-for-your-group/table-of-legal-entities/

https://www.parryfield.com/charities-information-hub/#charities-incsocvscharitable

 

[Hutan]

However, the act is interpreted as setting an expectation of a high level of active member engagement, e.g.

I don't think that (that Incorporated Societies must have a high level of active engagement) is really right. The first bit you quoted is clause (2) from this section:

89Resolution in lieu of meeting
(1)This section and sections 90 to 92 apply if the constitution of a society allows a resolution to be passed in lieu of a meeting under section 26(1)(k)(v).

So, Clause 89(2) only applies if the organisation's constitution says it does. I haven't looked into it, but I can't see how an optional clause can be used as evidence that there is an expectation of a high level of member engagement. If an organisation doesn't want the optional clause, leave it out of the constitution.


Consumer NZ, for example, is an incorporated society. Members are entitled to vote for the board members, but it's not compulsory. The only requirement of a member is to pay their annual subscription. I'm a member. I read the reports when I want to find a good stick blender or whatever, I usually vote for the board members, I pay my annual subscription. If it became known that the board was acting irresponsibly, I would vote for different board members. That's all. But that ability to change the board is an important safeguard, especially when the ANZMES committee has substantial funds to manage, and can influence the care that people with ME/CFS receive.

The following quote is from Ravn's community toolkit link:

Key people in an Incorporated Society

• Committee: any society that incorporates or re-registers under the new Act has to have a governing body, which is referred to as the “committee” in the 2022 Act. There has to be at least 3 people on the committee. The 2022 Act refers to these people as “officers”.
• Officers: A society’s officers are the committee members. They are chosen by the society to manage, direct and supervise the society’s activities. Other people can also be officers even if they’re not part of the elected committee, if they hold a position which allows them to exercise significant influence over the management or administration of the society—for example, a CEO. Officers have specific duties, set out in the 2022 Act.
• Members: A society’s members are people who have consented to being part of the incorporated society, following the process set out in the society’s constitution. Unlike officers, members don’t have special duties under the 2022 Act.

So, members who aren't officers aren't required to do much under 2022 Act.

I think anyone who is saying that ANZMES non-officer members would have to do a lot if ANZMES was an incorporated society (and so that is why a Trust is a better structure) is wrong. I don't know why they would say that. @Ravn, has someone lining up to be an ANZMES trustee actually said these series of things that aren't true?

 

[Ravn]

So, members who aren't officers aren't required to do much under 2022 Act.

I think anyone who is saying that ANZMES non-officer members would have to do a lot if ANZMES was an incorporated society (and so that is why a Trust is a better structure) is wrong. I don't know why they would say that. @Ravn, has someone lining up to be an ANZMES trustee actually said these series of things that aren't true?

A misunderstanding here? I don't think anyone claimed "non-officer members would have to do a lot"? I understood member engagement to simply mean to actually bother to vote on major issues, whatever major means in this context. But that's just my guess and I don't have the capacity to dig into this. The links I posted earlier were just for general information as a starting point for people interested in looking deeper. They don't come from ANZMES.

I have no idea who is lining up to become a trustee, let alone what they may have said on the matter if anything. I assume some of the current committee members are candidates but that's only a guess. All ANZMES have said on the matter, that I know of, is in the SGM notice

SGM - Transition to a Charitable Trust: Unlocking Greater Potential for ANZMES

The Opportunity: With the new Incorporated Societies Act 2022 requiring re-registration by April 2026, ANZMES has the unique opportunity to optimise our organisational structure. Currently, as an Incorporated Society, member involvement is required for major decisions, but participation is low, with less than 5% of those affected by ME/CFS in NZ engaged. We propose transitioning to a Charitable Trust model which allows for more agile governance, aligning with our strategic plan to better serve the growing ME/CFS and long COVID community.

Why a Charitable Trust? We value our members' feedback, but we understand that participating in AGMs and surveys can be challenging, especially for those unwell. The new Charitable Trust Board (CTB) structure removes this pressure by eliminating the need for member input on such matters. The key benefits of a CTB are as follows:

● Additional Revenue Streams: Allows us to generate funds for charitable purposes. By diversifying income, we can invest more in research and initiatives, strengthening our impact as the leading National Advisory and securing our vision for the future. This transition also aligns with best governance practices, providing a strong foundation for growth and success.

● Reduced Administrative Burden: CTB’s have simpler reporting requirements, allowing us to focus on our core objectives as the National Advisory on ME/CFS. The new Incorporated Societies Act 2022 increases administrative complexity, but a Charitable Trust model offers straightforward governance and compliance, reducing overhead.

● Efficient Decision-Making: Centralised decision-making by an elected board allows us to respond quickly and effectively to opportunities and challenges, enhancing our mission without the need for extensive member approvals.

● Reduced Quorum Requirements: Charitable Trusts eliminate the need for member participation resolving the challenge of low AGM attendance and enabling more effective governance.



Transition Plan: If approved, your role will shift from 'members' to 'supporters,' acknowledging your valuable contributions. The transition will unfold as follows, with a focus on open communication:

● Voting: Members will vote on this transition via mail or online form and during the SGM/AGM in November.

● Trust Deed Development: A pro bono lawyer will develop the Trust Deed to replace our Constitution.

● Establishment: The Charitable Trust will be formally established, followed by the recruitment of the Trust Board, and the winding up of the Incorporated Society.

NOTICE OF SPECIAL GENERAL MEETING

ASSOCIATED NEW ZEALAND MYALGIC ENCEPHALOMYELITIS SOCIETY INC.

Notice is hereby given that an Online (via ZOOM) Special General Meeting has been called for Saturday, 2nd November 2024 starting at 10.30am

Resolution

• Ordinary resolutions shall be determined by a simple majority vote.
  
  
• Your committee has indicated that they will vote in favour of the resolution.

The motion put to the ANZMES membership:

It is proposed that ASSOCIATED NEW ZEALAND MYALGIC ENCEPHALOMYELITIS SOCIETY INC will transition to a charitable trust board.

[removed section with passcode]

Reason transition to a charitable trust board:

With the new Incorporated Societies Act 2022 requiring re-registration by April 2026, ANZMES has the unique opportunity to optimise our organisational structure. Currently, as an Incorporated Society, member involvement is required for major decisions, but participation is low, with less than 5% of those affected by ME/CFS in NZ engaged. We propose transitioning to a Charitable Trust model which allows for more agile governance, aligning with our strategic plan to better serve the growing ME/CFS and long COVID community.

________________________________________________________________________

Please note , if you unable to attend the online meeting in person you can vote by post or online form, votes to be received NO later than 5pm Thursday, 29th October 2024
[removed section with voting form]

 

[Hutan]

Currently, as an Incorporated Society, member involvement is required for major decisions, but participation is low, with less than 5% of those affected by ME/CFS in NZ engaged. We propose transitioning to a Charitable Trust model which allows for more agile governance, aligning with our strategic plan to better serve the growing ME/CFS and long COVID community.

A misunderstanding here? I don't think anyone claimed "non-officer members would have to do a lot"? I understood member engagement to simply mean to actually bother to vote on major issues, whatever major means in this context.

But members don't have to vote on major issues. If you want members to just vote at the AGM for the trustees and maybe if there is a significant change to the constitution, you just put that in the constitution. ANZMES appears to be saying that "member involvement is required for major decisions", but that's simply not true, unless you define 'major decisions' only as 'voting for Trustees'. Lack of member engagement is not a reason to change to a charitable trust structure.

I think the proposed new structure leaves the trustees to do pretty much what they like, within a wide scope, and to keep the decision-making tightly held within an "in-group" for ever more. I think that is concerning. Is anyone else concerned?

 

[Dolphin]

ANZMES 2024 SGM Report

The ANZMES SGM was held at 10.30am on the 2nd of November 2024 via ZOOM online meeting. This special general meeting was to vote for ANZMES to Transition to a Charitable Trust. Majority of people proposed that ASSOCIATED NEW ZEALAND MYALGIC ENCEPHALOMYELITIS SOCIETY INC (ANZMES) will transition to a charitable trust board.

This motion was moved by Fiona Charlton and seconded by Ange Robinson, which then was passed by all present at the meeting and through online and postal votes (ANZMES received a total of 6 online votes and 12 Postal votes, with 14 votes for and 4 against).

The ANZMES team will now proceed with organising the documents and matters to make the transition to a charitable trust and keep the members of ANZMES updated throughout the process.

 

[Hutan]

A total of 18 votes including online votes, and only 14 of them in favour of the new structure. I'm pretty sure that some of them would have been double votes, because regional organisations had a vote as well as individual members. So, someone controlling a regional organisation could effectively vote twice. The number of people voting for the change might have been as low as 8.

And that's all it took to take away members' rights to choose their governing committee. The committee makes submissions to government purporting to represent the ME/CFS community, and they award funds for research.

 

[Hutan]

https://anzmes.org.nz/anzmes-executive-committee/
The Executive Committee is currently

Fiona Charlton - President
Ange Robinson - Vice President
Amy Ma - Treasurer
Dr Ros Vallings - Medical Advisor (I had not been sure if she still was the medical advisor after retiring, but she is)
Dr Sarah Dalziel - Ex-officio Medical Advisor (whatever that title means. I think she is the daughter of Dr Vallings?)
Dr Gabby Short
Steve Murray
Dr Anna Brooks - an ME/CFS researcher
Suzanne Duffy
Wendy Matthews

It would be great if some ANZMES committee members could explain why they thought the new structure was better and how they intend to ensure accountability to the ME/CFS community now. I don't know how many members (directly of ANZMES rather than of regional organisations) ANZMES has. But I doubt that they have a mandate to present themselves as the national organisation representing people with ME/CFS.

 

[bicentennial]

... Lack of member engagement is not a reason to change to a charitable trust structure.


I think the proposed new structure leaves the trustees to do pretty much what they like, within a wide scope, and to keep the decision-making tightly held within an "in-group" for ever more. I think that is concerning. Is anyone else concerned?

Yes, our New Zealand Society and one of our UK Charities both appear to be after operating this same business model but with exemption from business obligations, hence the laws, statutes, regulations and registrations of Societies and Charities (and other entities enjoing such exemptions) - otherwise anyone could set up a registered exemption and run with the ball.

It would be disticntly unethical to proceed at will by updating Members without first consulting them especially on the unexplained change of Deed being the work in progress I suppose. This is exactly how its done in the UK too.

Is Deed a fair word for the incorporating documents which still need to be updated and re-re-registered, whether under updated Charity law or updated Society law.

I do wonder what new requirement(s) are made of NZ Societies that suddenly made an NZ Charity look far more appealing.

The NZ Govt, medical and research communities might or might nor want to take this Society or Charity as representative of a large power-base being the Membership

Looks to me like there was no priority to consult with the ill Members providing the numbers for the claim to represent enough people to matter, so that’s the power-base, the basis of the power exerted just not exerted to inform and consult Members in a live, sustainable communication

Maybe other highly organised services were provided instead, enough to be appreciated by people who cannot highly organise any thing

Our UK charities have had similar tugs of war with Members. One has already made amends. The other has yet to follow

Our New Zealand Society is turning into a Charity, apparently in some big reluctance to re-re-register as a Society – which reason seemed to pale into insignificance in the flurry of other reasons given. So I do wonder what a new re-re-registration requires, apart from the existing bridle upom the executive

I think the ME / CFS community agrees that consulting an ill Membership is only a matter of exerting the organisation thereto, although sadly the organisation had no such priority in the past, spared itself this task, and then in some hard sell offered to also spare the Members whose task it was not

I get the gist that the Incorporated Society required an executive to consult with the Membership

And that's all it took to take away members' rights to choose their governing committee. The committee makes submissions to government purporting to represent the ME/CFS community, and they award funds for research.

The Executive Committee is currently .. .. .. Dr. .. Dr. .. Dr. ..Dr. .. .. Dr. .. .. could explain why they thought the new structure was better and how they intend to ensure accountability to the ME/CFS community now. …. I doubt that they have a mandate to present themselves as the national organisation representing people with ME/CFS.

 

[Dolphin]

Press release – ANZMES publishes critical guide to help doctors navigate ME/CFS research and avoid harmful treatments

7th October 2025 – For immediate release ANZMES, the leading National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), has published a new resource for healthcare prof…

anzmes.org.nz

Press release – ANZMES publishes critical guide to help doctors navigate ME/CFS research and avoid harmful treatments​

October 7, 2025 by anzmes01
7th October 2025 – For immediate release

ANZMES, the leading National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), has published a new resource for healthcare professionals, “A Guide to Navigating Research: Discerning Robust vs. Flawed Science.” This essential article, released in conjunction with a one-page toolkit, is designed to combat a history of misinformation that has led to inadequate care and often harmful treatments for ME/CFS patients.

“Our goal is to arm doctors with the tools they need to critically evaluate health claims and research,” said Fiona Charlton, President of ANZMES. “By highlighting the difference between evidence-based medicine and flawed science, we can help prevent the cycle of misunderstanding and ensure patients receive care that is grounded in a true understanding of ME/CFS as a complex, biological disease.”

The new guide outlines key principles of quality research, including validity, reliability, and the crucial role of replication. It also provides a checklist for healthcare professionals to scrutinize a study’s source, methodology, and conclusions. The toolkit emphasises the importance of avoiding common research biases, such as confirmation bias and multiple testing bias, and advocates for the use of proper diagnostic criteria for ME/CFS research.

To help doctors quickly assess the quality of a study, ANZMES has identified key “red flags” and “green flags.”

Red flags of flawed science include studies with a conflict of interest (eg. funded by a for-profit entity), a lack of ethical oversight, or poor methodology such as the absence of a control group or a high drop-out rate. Research that relies on vague data, shows confirmation bias, and overstates conclusions not supported by the evidence should be viewed with skepticism.

Green flags of robust science signal a study that is transparent about its funding, has undergone a formal ethical review, and uses rigorous methodology, including the use of precise diagnostic criteria. Good research also integrates objective data, acknowledges its limitations, and is published in a peer-reviewed journal. The most trustworthy research is one whose findings have been replicated by independent research teams.

ANZMES urges healthcare professionals to embrace shared decision-making, where well-informed patients and their lived experiences are central to the treatment plan. This collaborative approach is vital for building trust and ensuring the management plan respects the unique needs of individuals with this historically misunderstood condition.

Access full article and one-page toolkit here:

• ANZMES Article: Discerning Robust vs. Flawed Science
• ANZMES GP Toolkit for Navigating Research

 

[Utsikt]

I’m unimpressed.

Red flags of flawed science include studies with:

• a conflict of interest (eg. funded by a for-profit entity)

That’s the least important conflict of interest in ME/CFS research. Personal interests are far more common.

• a lack of ethical oversight

What is that even supposed to mean? And how is an ethical clearance a sign of quality with all the rubbish that gets approved every day?

• poor methodology such as the absence of a control group or a high drop-out rate

Again, not the most important thing in ME/CFS or any psychosomatic research. That’s the combination of no blinding and subjective outcomes.

• Research that relies on vague data

Oh, we’re not using vague data, we’re using a validated questionnaire!

• shows confirmation bias

How are you supposed to use this as a red flag? Res flags are supposed to be immediately apparent, this requires a lucid analysis of the data and interpretation.

• overstates conclusions not supported by the evidence

Same as above, this requires analysis. Often not difficult analysis, but it’s still not a red flag. It’s definitive proof that the study is trash. You shouldn’t be just suspicious if you get to this point.

————

Green flags of robust science signal a study that is:

• transparent about its funding,

And how would you know if they are actually transparent?

• has undergone a formal ethical review,

As if that’s a mark of quality? It’s a charade.

• uses rigorous methodology, including the use of precise diagnostic criteria

I’m not sure any doctor needing this document would know what rigorous methodology actually is. And what does precise diagnostic criteria mean to an uninitiated doctor?

• integrates objective data

Finally a sane point, although the data also has to be relevant.

• acknowledges its limitations,

How would you know if the acknowledgements are sufficient without analysing the study? And how does acknowledging it make up for e.g. bad methodology?

• is published in a peer-reviewed journal

You mean like the Lancet or BMJ?

• The most trustworthy research is one whose findings have been replicated by independent research teams

If any doctors want to attempt to untangled the connectedness of the psychosomatic researchers I wish them good luck..

 

[Jonathan Edwards]

Yes, underwhelming and missing the point.

 

[bobbler]

I’m unimpressed.

Red flags of flawed science include studies with:

• a conflict of interest (eg. funded by a for-profit entity)

That’s the least important conflict of interest in ME/CFS research. Personal interests are far more common.

• a lack of ethical oversight

What is that even supposed to mean? And how is an ethical clearance a sign of quality with all the rubbish that gets approved every day?

• poor methodology such as the absence of a control group or a high drop-out rate

Again, not the most important thing in ME/CFS or any psychosomatic research. That’s the combination of no blinding and subjective outcomes.

• Research that relies on vague data

Oh, we’re not using vague data, we’re using a validated questionnaire!

• shows confirmation bias

How are you supposed to use this as a red flag? Res flags are supposed to be immediately apparent, this requires a lucid analysis of the data and interpretation.

• overstates conclusions not supported by the evidence

Same as above, this requires analysis. Often not difficult analysis, but it’s still not a red flag. It’s definitive proof that the study is trash. You shouldn’t be just suspicious if you get to this point.

————

Green flags of robust science signal a study that is:

• transparent about its funding,

And how would you know if they are actually transparent?

• has undergone a formal ethical review,

As if that’s a mark of quality? It’s a charade.

• uses rigorous methodology, including the use of precise diagnostic criteria

I’m not sure any doctor needing this document would know what rigorous methodology actually is. And what does precise diagnostic criteria mean to an uninitiated doctor?

• integrates objective data

Finally a sane point, although the data also has to be relevant.

• acknowledges its limitations,

How would you know if the acknowledgements are sufficient without analysing the study? And how does acknowledging it make up for e.g. bad methodology?

• is published in a peer-reviewed journal

You mean like the Lancet or BMJ?

• The most trustworthy research is one whose findings have been replicated by independent research teams

If any doctors want to attempt to untangled the connectedness of the psychosomatic researchers I wish them good luck..

I think it’s not a bad idea and on the right track with some things. I like the red flags idea and that eg high drop out rates is in there

But maybe a future iteration could work up how to bring alive some of the issues/tactics commonly used specifically in me/cfs research

I use the term krypton factor filter whenever I see high drop outs because it normally uneducated someone has not realised that their ‘treatment’ is actually being used as a barrier to filter out those least unwell from those with the condition rather than er them kidding themselves that it was the treatment that made that group ‘well’ vs the ones who couldn’t ’complete that marathon’

I say this because I often wonder whether the audience isn’t generally those who are the big perpetrators who are never going to change as they choose to do it either due to their own morals/beliefs or because they can’t/wont see the issue and aren’t interested in balance or what doesn’t work for them (they are ‘reframers’).

But those who are yet to be brainwashed or conned by them need a bit more ‘this is how it will be disguised’ and ‘if you see the words x,y,z smell a rat’ and to look out for classics like a line in the abstract needing to be checked against what the results actually found (they often just straight lie in the abstract by changing what isn’t found as significant in results to a lie or almost a lie by saying ‘doing more of this is a good thing’ or weasel words inferring significance). For them to go straight to the methods section and look at the sample and how many drop outs - often there is a flow cgart.

Basically give them a road map of where the cons are hidden and what they are worded like.

Plus of course it IS ‘evidence based medicine’ that normally ISNT using proper scientific design and method. I can understand wanting to be polite but by doing it this way people will be misled to think if it says it is ‘ebm’ then they DONT need to check for these errors when they most certainly do

I agree we don’t want to be rude or for it to sound manifesto/rant-y but it does need to be a bit more descriptive of what people will see on the ground - as the top-level words like confirmation bias are things they will think they ‘already know and check for’ but they just aren’t realising how sneaky certain tricks are , being given the road map for which sections to check and what these naughty things tend to look-like in real life. And yes some of these need explaining why it is an issue - and the drop-out/ filtering is actually a biggie that’s been used hugely in me/cfs , a not understood condition, so does need explaining out etc

It’s getting there I think

 

[Trish]

Why would doctors look to a patient organisation for advice on research methodology and quality? Surely I if ANZMES want doctors to do better they need to get someone doctors are likely to take notice of to write the document, like someone with a proven track record of high quality research.

 

[bobbler]

@Trish i sort of agree but I think we have to start somewhere with getting allies and pre bunking the generation who might read it before they get the big ole sales spiel from EBM. Of course at the current state of affairs most won’t. SO we are admittedly looking at find a small number who would want to make the effort to learn if given the right things, and go from there. Start from the 'warmest lead' and understand what they need. As it is more powerful to have that no matter how small than just pwme etc. But we can maybe identify the few who might be most open and work out what tone etc they might read. And then at least the ‘most friendly’ being given something where they start to get it can be built on from there.

Maybe but it seems certain areas of medicine and science have been operating by regulations and decent standards for decades and the ‘creep’ isn’t something they are therefore aware of or maybe they are but don’t have the time or political juice to be pointing out the issues above a gut feeling

But more importantly when medics are forced to trust or go ‘outside their subject area’ it might be one thing reading papers in other specialism that also are medical and scientific

And another when they suddenly have to interact with ‘behavioural and therapist delivered’ or rehab and psych. And they don’t realise that areas such as those don’t have to be ‘whole new worlds they just have to trust that’s the right way’ but instead are areas where there might be a few good methodologists but sadly in the last few decades the rot has taken over because EBM is cheap quick and involves wangling the result you want and so without the area having penalties for such behaviour it causes a race to the bottom.

They think ‘it doesn’t feel right’ or they ‘don’t get it/recognise the method’ simply because psych isn’t their area. Not because there are some good psych methodologists but most they might have pushed on then aren’t that.

I thought I didn’t get psychology literature for certain ‘schools’ of it, having come from a maths and science background to it as a degree. When the bps model was introduced as a big circle following a clinical literature of testable models that had a decision-chart design where it could therefore be checked with hypotheses and nulls then writing an sssay on it you wonder what am I missing here. For example.

And you assume maybe it’s some expertise rather than other people with the same background thinking the same as it turns out to be a con which is just hidden in so many tricks those who smell it can’t out their finger in it and all the tricks quickly without someone doing it for them. In terms that circle the bits they will see in real life in a paper - rather than terms we all know ‘in theory’ but don’t see how the flaws ‘will look’

And we all get surrounded by the emperors new clothes if lots of people who can’t see it it don’t care to and don’t want to rock the boat and think claiming to ‘get the nethod’ in a way I couldn’t means they will be seen as clever so learn to play the game whilst the odd ethical scientist is sitting there still puzzled wondering what they see and get that they don’t. It’s like a big psychology trick genuinely even when it’s your own subject until you have the tools.

But those tools can’t be telling the theory they already know/granny sucks eggs but in pointing out when and how these things are mis-applied . I’d actually for instance tell people not to trust the conclusions and recommendations in the abstract without opening the actual results for example because too many papers just don’t even transfer the results honestly. No one would think how important it is to go to methods and check if 50% were filtered out by the treatment or even worse if it’s actually a retrospective eg from a clinic ten years ago and the ‘sample’ filtered out starts to make it look cherry-picked as ‘those who got better’ only being included in their study and all the rest quietly ignored etc , if they wouldn’t do it themselves.

Or they don’t realise how important it is not to do it in certain conditions (it isn’t just that 50% of fatigued people are too lazy to complete so it’s a norm but that the treatment is collapsing people with PEM ) because they’ve been mis-sold what the condition is. Or why long term is more important than short term because they’ve don’t know people with PEM live in an envelope they’d have shrunk by the treatment vs short term it appears their fatigue is ‘improved’ because someone made them switch a walking test for doing their own groceries and reducing their working hours to go to that test instead of working that day etc.

 

[Ravn]

Putting aside the quality or otherwise of the content (which I haven’t read properly yet) isn’t there a danger that this would be received akin to mansplaining by doctors?

To be sure I’ve met some doctors where I wondered how they’d ever got their degree given how foreign scientific principles seemed to them. So I can kind of see where ANZMES are coming from

It’s not all doctors of course, others are very good at scientific analysis. But whether or not they are good at it, they all believe they are, or at least better than their patients. So a patient coming along with these guides, I doubt that’s going to go down too well

Maybe it would work better having a guide squarely aimed at patients who could then impress their doctors with their knowledge and share the source of that knowledge if the doctor expresses an interest

 

[Hutan]

• a lack of ethical oversight

What is that even supposed to mean? And how is an ethical clearance a sign of quality with all the rubbish that gets approved every day?

I suspect the ethical oversight item might have been inspired by that recent NZ Lightning Process paper by Bruce Arroll that claimed to be a service evaluation or something, rather than research, so not requiring ethics approval. While it was a problem in that one paper, it's hardly a common or major issue for us, and, yes, ethics approval seems to be no significant barrier to the publishing of nonsense.


I see that Trish (oh, now Ravn too, I took a while fixing my typos) has just posted on the point I was going to make about the GP Toolkit. An ME/CFS organisation lecturing doctors on how to identify good research? I suspect most doctors, if they actually got to the stage of reading the toolkit page, would just roll their eyes. Even if the 'Key Concepts of Reseach' were written very well, I can't imagine many doctors going 'well, goodness, thank you ANZMES for telling me about replication - I never thought that it might be important in identifying useful results'.

And, unfortunately, not much is said that is actually useful for us. Replication is not really the problem with the BPS literature - there are plenty of studies finding small positive results, all with similar flaws.

See this item on generalisability for an example of content that is just going to confirm doctor's negative views about ME/CFS and ME/CFS organisations.

"Generalisability: If a study uses <30 participants, findings may
not be generalisable to a wider population. However, for ME/CFS,
a highly individualised condition, the precision medicine model
takes a “deep dive” approach, essential for revealing subgroups,
and understanding individual patient differences. This nuanced
approach is often lost in large, one-dimensional datasets, often
seen in fields like cancer studies."

Unfortunately, I can't see these documents being at all helpful.