The future and funding of UK ME/CFS charities

Dx Revision Watch said:
But TYMES charitable objectives are specifically for children and young people and what exactly would they bring to a larger org?

31 May 2018 Income: £11,761
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Well it’s the argument that we are all housed under one roof. So there’s the rspca organisation then there a youth wing of that. The main benefit would be from having a big group rather than lots of different ones with the potential for overlap of resources /materials and time so for eg at a forward ME meeting or the recent meeting at scotland where possibly all DR S, SC , An meruk rep all attended, it might be just one of them freeing up time and resources /travel expenses for others to do something else. Plus as you say TYMES is specifically about kids support, does it also inform about research of fundraise for research. If it was part of a larger group then families would be exposed to the wider ME world outside support & schooling ?

I don’t see why meruk not being a member org impacts a merge. It’s focus is research , it seems to have near same beliefs as mea, mea has the Melvin Ramsey research fund & some of Its work is On building up research. Meruk drs and staff could bring that to mea or a post mea merger, where we need a segment focused on science and research.
 
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Cinders66 said:
Well it’s the argument that we are all housed under one roof. So there’s the rspca organisation then there a youth wing of that. The main benefit would be from having a big group rather than lots of different ones with the potential for overlap of resources /materials and time so for eg at a forward ME meeting or the recent meeting at scotland where possibly all DR S, SC , An meruk rep all attended, it might be just one of them freeing up time and resources /travel expenses for others to do something else. Plus as you say TYMES is specifically about kids support, does it also inform about research of fundraise for research. If it was part of a larger group then families would be exposed to the wider ME world outside support & schooling ?
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You're not going to get Jane Colby working alongside what remains of AYME staff.
 
Cinders66 said:
...I don’t see why meruk not being a member org impacts a merge. It’s focus is research , it seems to have near same beliefs as mea, mea has the Melvin Ramsey research fund & some of Its work is On building up research. Meruk drs and staff could bring that to mea or a post mea merger, where we need a segment focused on science and research.
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For a start, and leaving aside whether MERUK would want to merge with a patient membership org, perhaps MERUK might not wish to merge with an org like AfME, whose research committee has Stephen Holgate on it.
 
And rolling up a number of orgs into one would mean putting an awful lot of trust and faith in the direction and policies of one org. Let us not forget AfME in the era of Sir Peter Spence; or prior to that, Chris Clarke.

In 2002/3 the words "and chronic fatigue" suddenly appeared on AfME's logo. CEO's come and go.
 
Cinders66 said:
With regard to legacies I think that Parkinson’s And dementia especially are in a much more favourable position than us because they are more end of life illnesses, they are degenerative ie you are going to die in a potentially bad state and as you decline in your 70/80s you might think about where to leave that wealth & house you built up in your healthy youth.
I’m an example of someone who’d got very severe by my twenties, have never worked seriously, live in a council house, won’t die possibly for years but will have nothing to leave anyway.
Obviously there are other many scenarios for cases and It’s worth Encouraging people in our community but our potential is less afaic.

AFMEs Facebook & Twitter seem to revolve around a hundred and one ways through any medium for the newly ill to explain that we are more than tired.
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Yes, some won’t have much to leave. A lot of people in my country do seem to live in property they own by the time they die; people can inherit money or property from parents and the like.

Getting ill when younger may mean there are more childless people. A lot of people’s estates tend to go to children.
 
And AfME isn't constituted as a membership org in the same sense that the MEA is. Only the BoT of AfME has a vote - not the "members". There was a time when even its AGMs weren't open to the "members". Even now, I don't think AfME's "members" vote in the trustee election processes.
 
In theory, under Company law, the membership of the MEA has the right to request a copy of the Members Register, call an EGM and propose a vote of no confidence in the Board.

AfME "members" can't do that.

So if you were to envisage folding the MEA and several of the smaller orgs into AfME (or into a newly named org) the first hurdle would be the politics over how this merged org would be constituted going forward.

Would the members have membership status that allows them to attend AGMs; vote at AGMs; vote on resolutions and matters of policy and position or on proposed changes to the Mem & Arts; participate in a democratic ballot process for trustee elections; nominate themselves or others in trustee elections; call EGMs etc.

Or would the newly merged org retain the AfME "members" status, where the Board of Trustees, itself, votes for who joins its Board - not the members - who are basically powerless subscribers to an organization whose only true members are its Trustees/Directors?

I know what I'd want.
 
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NelliePledge said:
Yes you’d want to take the positives forward and leave a lot of the way AFME currently works behind.
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But how would you set about achieving that?

Last year, AfME pulled in £1,268,718; no figure available for Year end 2018 for MEA, but for Year end 2017, £325,997.

MEA operates with far fewer staff and no CEO or other senior management other than Gill Briody.

One might assume that rather than close both orgs down and reconstitute as a new org, and in order to minimise administrative disruption, that the smaller org would be absorbed into the larger org, no doubt shedding some of the smaller org's staff who may not wish or be in a position to relocate to another part of the country. But there are several ways of merging and restructuring.

And not all charities have the power to merge - one would need to review their governing documents.



Guidance from the Charity Commission on different ways of merging:

https://assets.publishing.service.g.../uploads/attachment_data/file/638161/CC34.pdf

Charity Commission for England and Wales
GUIDANCE Collaborative working and mergers: an introduction

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Worth skimming sections: Ways of merging and Issues to consider

https://www.charityfinancials.com/c...should-more-charities-consider-them-1733.html

Mergers: should more charities consider them?
20 October 2017

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https://www.gov.uk/guidance/how-to-merge-charities

Guidance
How to merge or link charities
 
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Anyhoo, I really shouldn't be here, having retired.

Should I ever win the lottery (which isn't very likely since I've only ever bought one ticket the night the National Lottery launched), but if I did and won millions, after buying the leather biker jacket I've hankered after for years, I'll pledge a substantial amount to kick-start a new charity.
 
Dx Revision Watch said:
there is a great deal of politics between the membership orgs: AfME > MEA > AYME > TYMES Trust > 25% Group.
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This is why I've given up on membership organisations and just donate directly towards research when I've got a bit of spare cash. I know you can't escape politics in any organisation, especially those run by volunteers, but it just exhausts and depresses me.

I want to see money going towards good science; I know here's a place for political lobbying, CPD for medical professionals, and support for patients, but given the scarcity of funding, unpicking disease mechanisms and defining a reliable diagnostic pathway seems as if it has to be the number one priority. It's extremely unlikely there'll be an easy fix for such a complex condition, but we'll never get serious money into management and treatments until it escapes the contested illness category.
 
Moderator note:
This post and the subsequent replies about the ME Association have been copied from this thread.
https://www.s4me.info/threads/forward-me-group-minutes-10th-july-2019.11269/#post-202747


There’s been no campaigning on this though. The Scottish FOI was 2017. Did forward ME just decide nothing could be done until 2020 and a NICE review, make that decision and we just wait? . Surely waiting for the establishment to evolve doesn’t have to be our charities course of action. It’s like when MRC refused charities request 2012 for continuing ring-fenced funds. Unless you read the minutes I doubt members of charities were even told or certainly not in a “they’ve refused what we asked so we are starting this campaign” way. Or when we need better services but we wait until the day research will prove our true medical home.

For an illness as down trodden ,misrepresented, neglected, under resourced, the representational charities (excluding #MM) are so passive And acquiescent. Why haven’t they reformed an Appg. Why isn’t there a national call for an ME/CFS strategy instead of that just being something in the Scottish #MM manifesto, who by the way refer to the Tymes foi findings in their section on education. Their document is great but why don’t we see something similar from mea or AFME who just speak vaguely about a desire to inspire & inform as their own strategy.? I can only recall a campaign in 2017 regarding NICE ( after America had published some groundbreaking stuff regarding GET I think) and then there was the PACE petition 2005.

I know some people argue that charities can do what they like but we are unfortunate to have the main two deciding that campaigning isn’t something they will do because many other major charities do. For example this BELOW is from Parkinson’s uk and it’s a charity leading a network of patients and volunteers in endlessly campaigning every month until they are satisfied with their lot.

Join our campaigns network today
Our Campaigns Network is made up of over 11,000 people, all working together to make a real difference for people living with Parkinson's.

How does it work?
We will contact you (normally monthly) with a campaign action for you to take. This could include:

  • contacting the Government, your local decision maker or service planner to support a campaign or to resolve a problem
  • sharing your experiences
  • completing a survey
  • joining forces with others to bring about change
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It’s positive, it’s inspiring and it both helps patients feel they can make a difference whilst proving leadership & mobilising them to make that difference. with the mea I think that it would be best if they got a CEO to bring it up to fulfilling its expected role and Dr Charles Shepherd had the medical advisor position .
 
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Cinders66 said:
...with the mea I think that it would be best if they got a CEO to bring it up to fulfilling its expected role and Dr Charles Shepherd had the medical advisor position .
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But first, the MEA's Board of Trustees (or the membership) has got to want to engage a CEO.

As things currently stand, the BoT has complete control over policy, direction and how funds are spent. And if Dr Shepherd were to become a salaried Medical Advisor, he could not remain a trustee. Also, looking at their most recent Year end accounts, could the MEA afford a salary of £50-70K plus employers' additional expenses to pay for a CEO?
 
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Dx Revision Watch said:
But first, the MEA's Board of Trustees (or the membership) has got to want to engage a CEO...
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Unlike AfME, the MEA is constituted as a membership organization. Under company and charity law, the members have the right to request a copy of the Members Register and to call an EGM, at which for example (and theoretically) a vote of no confidence in the running of the organization might be proposed or at which a resolution might be proposed that the organization should employ a CEO.

I say "theoretically" because in 2004, someone known to me did apply for a copy of the Members Register and this was initially refused. If another request were to be submitted, in theory, the MEA Board could delay providing a copy of the Register until the individual (or individuals) who had requested a copy were due to renew their annual membership; at that point, they could, theoretically, be denied renewal of their membership, which would bar them from voting at any EGM that might be called or in any resolutions that might be proposed at an AGM, just as my own application for membership of the MEA was denied, back in 2004.

Up until 2003, Dr Shepherd had received a salary as Medical Advisor*; he subsequently stood in the trustee elections, was elected to what remained of the Board of Trustees and has remained a trustee ever since:

BMJ Report
Third Sector Report

*Whilst trustees/directors can submit for reasonable expenses they are not permitted to draw a salary from the organization unless they stand down from the Board.
 
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Dx Revision Watch said:
Unlike AfME, the MEA is constituted as a membership organization. Under company and charity law, the members have the right to request a copy of the Members Register and to call an EGM, at which for example (and theoretically) a vote of no confidence in the running of the organization might be proposed or at which a resolution might be proposed that the organization should employ a CEO.

I say "theoretically" because in 2004, someone known to me did apply for a copy of the Members Register and this was refused. If another request were to be submitted, in theory, the MEA Board could delay providing a copy of the Register until the individual (or individuals) who had requested a copy were due to renew their annual membership; at that point, they could, theoretically, be denied renewal of their membership, which would bar them from voting at any EGM that might be called or in any resolutions that might be proposed at an AGM, just as my own application for membership of the MEA was denied, back in late 2006.

Up until 2003, Dr Shepherd had received a salary as Medical Advisor*; he subsequently stood in the trustee elections, was elected to what remained of the Board of Trustees and has remained a trustee ever since:

BMJ Report
Third Sector Report

*Whilst trustees/directors can submit for reasonable expenses they are not permitted to draw a salary from the organization unless they stand down from the Board.
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I suppose current members are going to be supportive or newly ill ignorant whereas critics won’t be members,so that’s an issue regarding getting change.

Why did Dr Charles Shepherd move from the paid medical advisor role to a non paid trustee medical advisor? Was there a CEO in the charity before the melt down years ago ? Does the not having even the basic leadership structure all other major Charities have reflect the poverty or a disinterest to be like other illness charities? Do you know much about the board, i don’t know what their role is , mea seems very much Dr Charles Shepherd led. Do they just meet occasionally, or are they all jointly deciding everything? Thanks.

Edit I understand the cost of a CEO but obviously most charities have one and I think that theres broad leadership qualities a ceo should have beyond the medical expertise of a medical advisor. If mea became more dynamic, proactive, campaigning, inspiring , relevant with lots of connection with volunteers etc then I think that they would generate more income. Obviously AFMEs isn’t a good example, i’m not sure wheher SC is still off sick, but there’s no difference whether she is or isn’t that's the problem.
 
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Cinders66 said:
...Why did Dr Charles Shepherd move from the paid medical advisor role to a non paid trustee medical advisor?
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He was dismissed as paid Medical Advisor in May 2003 and his contract terminated. See these links I provided in my previous post:

BMJ Report
Third Sector Report

Was there a CEO in the charity before the melt down years ago?
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Yes, Val Hockey had been CEO. She took a redundancy package in late 2003-early 2004, after a number of trustees had left and a new Board had been assembled. The number of staff were cut to the bone to reduce running costs.

Does the not having even the basic leadership structure all other major Charities have reflect the poverty or a disinterest to be like other illness charities?
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I cannot speak for the MEA Board of Trustees, but I would think the staffing structure since 2003-2004 reflects the lack of funds and the Board's preference.

There has never been any statement that I am aware of by the BoT that they would choose to employ a CEO, if and when funding permitted.

Do you know much about the board, i don’t know what their role is...
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The MEA's trustees are also directors of the charity for the purposes of the Companies Act. The MEA has a governing document - the Memorandum & Articles of Association which sets out how the org is constituted.

The Board meets regularly and summaries of their meetings used to be posted on the MEA's website and possibly still are. The trustees are responsible for running the organization. Since there are no senior staff other than Gill Briody (who is currently Company Secretary), the BoT determines how the org operates. There is an annual AGM to which members can attend. The MEA's annual Year End Report and Accounts are available from the Charity Commission website.

mea seems very much Dr Charles Shepherd led.
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Dr Shepherd is just one of several trustees.

DR CHARLES BERNARD SHEPHERD (appointed 6 December 2003)
EWAN STUART DALE (appointed 2 March 2004)
NEIL HARRISON RILEY (appointed 8 June 2004)
RICK OSMAN
NICKI STRONG
MARTINE AINSWORTH-WELLS
Nicola Anson (appointed 4 August 2017)

(Rick Osman had been a trustee during the Val Hockey era.)


Do they just meet occasionally, or are they all jointly deciding everything? Thanks.
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The Board has regular meetings with agendas, minutes and summaries of minutes. Decisions may also be made in between meetings of the Board or made in between meetings and ratified at the next BoT meeting. One trustee will have the role of Chair of Trustees, another Treasurer. Sometimes the role of Company Secretary or Acting Company Secretary has been take by a trustee, but the office of Company Secretary is currently held by Gill Briody (MEA's Operations Manager).

Edited to add:

You can download the MEA's Annual TRUSTEES' REPORT AND FINANCIAL STATEMENTS from this page on the Charity Commission site:

https://apps.charitycommission.gov....steredCharityNumber=801279&SubsidiaryNumber=0
 
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The ME Association's current office holders:

https://www.meassociation.org.uk/about-the-mea/patrons-trustees/

ME Association Board of Trustees
Chairman: Neil Riley
Vice-Chairman: Rick Osman
Hon Treasurer: Ewan Dale
Trustees: Martine Ainsworth-Wells, Dr Charles Shepherd, Nicki Strong
Associate Trustee: David Allen
Co-opted Trustee: Nicola Anson

Company Secretary: Gill Briody

ME Association Panel of Advisers
Hon Medical Adviser: Dr Charles Shepherd
Hon Paediatric Medical Adviser: Dr Nigel Speight
Hon Dental Adviser: Dr Richard Cantillon
Hon Dietetics Adviser: Sue Luscombe
Hon Welfare Rights Adviser: Ann Innes


Governance and Operational Policy

I have attached the PDF of the MEA's Mem & Arts for ease of access.
 

Attachments

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