United Kingdom: ME Association news

sorry because I was trying to not get myself sucked into this but...

the first section you've put a border around, particularly the last para. Well it just shows the differences in people's lives to his.

"if I'm back in bed by 10am no matter" [I got washed and dressed for the day at least]

It does matter hugely if you live alone and are the only one who can feed and toilet yourself and all of the other chores that mount up over a week and you waste all of your energy for the day washing and dressing to be back in bed by 10am instead. He does realise there are many who are caring for children or others?

I didn't read a word in either this or the 2019 article about how to do the washing (though I assume he had something clean to 'dress' in) or juggle booking medical appointments and getting hold of prescriptions and the related admin/calls or anything to do with the conveyor belt up to feeding himself, and then there is anything to do with 'cleaning' most struggle with help with but can't fit into their envelop from that cup being washed to sheets on their bed and of course the rest.

Others have used the word privilege but in the context of today it feels bigger than that. Either someone is well enough for all these gaps that would have to trump or be managed around as priorities 'getting dressed and washed for the day' or he needed, given his position to explain this different world and what is bridging the gap that his constituency is unlikely to either have or be struggling for help with (but dealing with the issue of such help being aware of other limitations like chat and sensitivities such as noise).

Don't get me started on how few people get the lying on the bed twice a day without something like building work, that has also exerted them before and after that, shaking through them.

It's nice for him that he has a recuperation hospital within a home , so why is that not what he is making his 'mission' [for all others to have access to] and title of his piece?

 

Well I couldn’t be the Chairman of anything, I’m not even on top of ordering groceries.

 

I've been reflecting on the impact of the publication of this editorial on my view of the MEA and I've realised that it has completely destroyed my trust in it as an organisation.

This means that I can't trust any of their choices of what research to fund, or any of the information resources that they put out. It means I daren't donate to them in case they use that money to push this narrative.

To convince me otherwise, they're going to have to do better than a forced public apology.

 

From the "Patrons, Trustees, Advisers, Staff" page: https://meassociation.org.uk/mea-team/

Emma Jefferies is Communications and Social Media Lead

"...Emma joined the ME Association in March 2021 as Social Media Specialist and has taken on the role of overseeing all communications and social media content."​

There are two "Communications Officers": Rachel and Kelly.


I wonder whose decision it was to turn off comments for the Twitter/X and Facebook posts for Neil Riley's statement - the board's decision, Emma Jeffries' or whoever is managing and moderating the Twitter/X and Facebook accounts this week?

I raised a query on the Twitter/X account on 17 December regarding a significant error in an MEA article concerning Nomenclature and SNOMED CT and have received no response my post, so I don't know who is managing the Twitter/X account at the moment.


Caroline Cavey is Magazine Editor and Literature Designer. She works freelance.


Not directly related to this most recent Neil Riley article issue, but I do question what value to the organisation and to the membership the concept of patrons brings. What have HRH The Duke of Kent and Etain, Lady Hagart-Alexander achieved for the organisation over the years they have been "patrons"?

There are currently six trustees - all of them bar one are men. There is additionally one female "Associate Trustee". I would like to see more women on the board.

They could have up to 8 elected trustees plus 3 co-opted trustees.

 

There are some comments on Facebook regarding the Riley statement posted under a different post flagging the "MEA guide to activity and energy management and pacing"

https://www.facebook.com/meassociat...3gt5ZA4cRXedHqaY2bazqwT6tEJpMtGl?locale=en_GB

See several constructive critical comments from

Sam Shine
Claire Lorraine
Kirsty Sivapalan
Tracy Meggitt
Ruth Braham

One of the posters is screenshotting these posts as comments are known to have been deleted from MEA Facebook threads in the past.

 

MEA have funded some dubious things of late. If I were on a funding board I would probably have said no to both the "dysautonomia protocol" and the ear-clip "vagus nerve stimulator" projects as well as the PROMs project.

 

I was curious to compare the MEA's trustee demographic with that of Action for ME:

The current board of the MEA consists of 6 trustees (5 men, 1 woman). I am not including the female "Associate Trustee" as my understanding is that this is a probationary role and this lady's name is not listed on Companies House as a Director.

Of the 5 men, 3 have been trustees for over 20 years. Their ages, according to Companies House, are 61, 69, 70, 73 and 79. Their average age is 70.4. With the female trustee, the average age is 67.3.

MEA is hurtling towards governance by old, white men.

The MEA's governing document allows for not less than 4, and up to 8 trustees, elected by the membership. The board is permitted an additional 3 co-opted trustees = 11 trustees in total.

In contrast: Action for ME has 12 trustees - 7 men and 5 women; age range 39-66. Average age just over 56. MEA cannot claim that younger people and women do not want to take on the role of trustee within ME orgs.

 

Looks like some more sorry not sorry emails landing from MEA to those who complained directly.

https://twitter.com/user/status/1859237897699783003

 

It looks like it arrived at that station long ago and blew up the train and tracks it got there on.

 

To me, this feels potentially existential for MEA now given the tacit approval by the other trustees for what has been published is the original article, the non-apology and the non-apologies that seem to be going out today.

There is such catastrophic damage being done to the reputation that it being quietly subsumed by AfME or simply wound up and its funds being distributed to other charities may be the only way out.

Of course there will be those who haven’t heard about this, maybe it’s a storm in Twitter cup, but, with 800+ people signing an open letter etc. this thing has grown legs and is walking on its own now.

This is something a relatively small charity would struggle to survive from and people are sharing that they will stop their membership.

 

It flags something about the way the job is designed vs what is needed to be a trustee / they are looking for that is making it difficult to get women ?

and of course maybe age and other diversity aspects (which could include living situation/ financial background etc being relevant for me/cfs too)

then there is the vicious circle of if someone if outnumbered then getting heard can be hard etc

 

https://www.charitygovernancecode.org/en/6-diversity

Charity Governance Code

Principle 6. Equality, diversity and inclusion

 

Ear clip Vagus nerve is Physios For ME’s project isn’t it?

If the MEA aren’t giving a large amount of funding to Chris Ponting next, then they can go and implode as far as I’m concerned.

 

It’s giving pale, male and stale.