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The story of the incremental adaptation and the foolhardy
…..

 

Yes good point. Important context.

This could have been really powerful. To have a fresh model and provide an example of good practice.

Difficult to know if the establishment would simply shut down progress here too. But surely the best opportunity if there is one at all.

 

I know! Been a blinding success.

Always happens, that. Ought to be called Chief Incompetence Officers. Makes you wonder why anyone takes the risk.

 

I’ll have to come back to this. But I think this sounds simple in theory but has been a problem to get in practice - and it needs the right people (and to do so the right opportunity ie not huge amount of energy that then isn’t listeners to and involves broken recording it as it is ignored or ‘misheard’ again and again) otherwise it results in something counterproductive

I get the idea of ‘going local’ but it’s just meaning you are dividing the little resource up in the bigger community who are capable when the broad principle issues are ‘in common’ such as the wrong type of staff running it limits them never being able to offer anything anywhere near what would be useful if they aren’t medical

 

They clearly employed the wrong one. Recruited and signed off by the Board, I assume, as is usual?

 

What happened back in 2003, anyway? I don't wish to re-open old wounds, but genuinely curious: I've read the story in the BMJ (BMJ 2003;326:1232) as well as the online rapid responses - it seemed there were both financial problems and a major dispute about the direction of the charity? Was the BMJ's story accurate - did the CEO take it in a psychosomatic direction? Don't think I've ever seen an account of what actually happened & why they are so highly averse to the idea of employing a CEO or having trustees in their traditional role of oversight rather than actively involved in all manner of operational matters.

One other problem with the idea of such very active, operationally-involved trustees, expected to work most days, is that it severely narrows the potential pool of recruits, especially when that potential pool of recruits should include pwME. The level of work they expect trustees to provide will be beyond the capabilities of most moderately & all severely affected, and despite the significant duties there is no remuneration, so far more likely to be someone retired or in a very financially stable position. By contrast trustees in a traditional oversight role with no operational duties can be drawn from a much broader pool of talent, could include more severely affected pwME, and so could be far more representative.

 

Some magazine articles from the time in four attachments:

See Page 3 of MEA Bulletin November 2002 by Dr Margaret Macdonald, who quit as MEA's Research Manager and Trustee to found a new international group to research ME (which was very soon defunct).

Text of Dr Macdonald's MED Foundation advert in third attachment.

See also articles in the pulled issue of ME Essentials December 2003. Some of these articles were edited and some did not appear in the issue which was subsequently sent out to members the following January.

Hope these may be of interest.

Good points.

 

It's discriminatory, there's no other way to look at it.

It's like companies that expect young graduates to do a year as an intern before they'll consider offering them a job, which excludes all candidates without a family or partner well off enough to fund their living expenses, travel, and the costs of working.


ETA: People wouldn't be eligible for out-of-work benefits whilst doing a trustee job that required them to work most days, any more than someone interning at a law or PR firm.

 

Yep it’s as old hat as that - which went out by about 2010

 

So, I guess this statement will be what they refer everyone to now alongside the FAQ.

I had hoped the apparent radio silence to the various queries raised from members here was them having a considered pause as a board, but, with a cursory glance, is looking like they are digging in or kicking the can down the road with vague statements.

The immediate queries such as what the heck happened with the articles remains unanswered and I doubt will go away with suggestions of a review of the articles.

 

Text of paper letter sent to Dr Margaret Macdonald. Neither the email address nor the website URL given in the advert published in Issue 10, November 2002 Research and Scientific Bulletin (a supplement to ME Essential magazine) appeared to be valid despite her requesting £5 be sent in order to obtain a brochure for her (as yet unregistered) charity.


Dear Dr MacDonald,

Re: MED Foundation

I have tried to email the MED Foundation for further information using the email address given in your advertisement in the MEA’s November Bulletin.

Mail addressed to medf@ntlworld.com is being bounced by ntl as ‘invalid recipient’.

Could you please advise me of the correct email address?

I should also be pleased if you could confirm the URL for the M.E.D Foundation website.

The URL given in the MEA November Bulletin www.medf.org brings up only the site of an Appalachian Mountain Economic Development agency.

As I cannot obtain further information about your new charity from a website I should be pleased if you will confirm both the email address and the charity URL.

I should like a list of the trustees.

I do not feel I can apply for the brochure until these queries have been addressed.

Sincerely,

Suzy Chapman
etc.

--------------------------------------------------

In 2004, the issue of this charity and the collection of funds was taken up by me and a colleague with the Charity Commission and the MEA Board of Trustees after having spoken to Dr Macdonald on the phone who claimed at the time that in the region of 3,500 people had responded to her advert and that the sheer volume was the reason why cheques were taking a long time to be returned to those who had sent them.

A notice was subsequently placed on the MEA's website to assure members that Dr Macdonald would now be returning all cheques.

The MED Foundation, she said, stood for the "ME Discovery Foundation". Plans for registering this charity in this name had floundered, she told me, due to unspecified 'obstructions'.

She also told me that an alternative charity was in the process of being set up and an application for registration being made – though she did not confirm whether the application had already been submitted.

I have no idea just how many cheques were sent to her and how many were returned. It was a bizarre business altogether.

 

Though I am not optimistic, let’s hope the Trustees do not use promised future action as a way of ignoring current concerns.

 

If I've heard nothing from Neil Riley or Dr Shepherd by another week, I'll send a follow up email. I shall also be regularly checking the Filing History on Companies House for any developments with the "true Articles".

 

https://www.facebook.com/meassociat...ZR4J9PG3WbQtUKZKe12WT7dbQ28y3p1Nq549a3WrZFJJl

The ME Association Chairman’s Statement for 2024 - The ME Association

There are a couple of comments to this post but we'll see how long they stay up:

Vanessa Clark
"On social media we continue to inform and encourage dialogue", until people start asking too many questions then we threaten to sue them.

Colin Barton
Some say that the MEA should have a CEO in post.


Last time Mr Barton posted that comment on a post all the comments to that post were hidden.

 

They need to think of that motion as binding and if they want to save the reputation of the charity then allow it to happen but take this months grace period to get themselves ahead and ready for it ie say it’s happening and there are plans to have new people in place and be updating the role to not be discriminatory by hours etc

in order to save us being at risk of it being rushed and opportunists ending up taking on those trusted positions because it has to be done in a rush later in the coming 18months rather than planned starting now

of course within that month then we do need something tgat is binding coming in - there’s no more trust I’m afraid and only something that signs over that fait a compli otherwise any little things that take time will result in rightly people having to sssyme it might be game plsying without something cemented that all are on that same page and agreed endpoint

was it on here or elsewhere where someone talked about their experience of having had the ‘help team in’ from somewhere like the CC to sort their governance issues and it having been actually a really good experience?

 

It’s ok we have Charles and Neil to represent. I’m being sarcastic.