United Kingdom: ME Association news

Here are the research studies ME Research UK are currently funding:
https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-investing/

It includes

• Project 66 (offered prior to 31st Oct 2023 and accepted post 1st November 2023).
  Prof. Fatima Labeed, University of Surrey, UK, “The Electrophysiology of ME/CFS: Development of an Electrical Model for Exploration and Diagnosis.” (joint grant with the ME Association).

 

A Company Secretary should be dealing with this type of request. It should not be left to the whim of the Chairman to decide whether or not he cares to meet the obligation to provide copies of minutes. I don't understand why they no longer have one. It does not need to be a member of the board.

It's a pity Gill Briody is no longer Operations Manager. It was Gill, as Company Secretary at that time, who had signed the Resolution certification letter for Companies House. It would have been Tony Britton who put the magazines together with the resolution notice, summary report of that year's AGM and the General Meeting for the Resolution.

Four of the current 6 trustees were trustees in 2014. Likely that some of them still have copies of the minutes as email attachments. 10 years is not all that long ago.

 

Despite requesting a response from some one else, I just received this response from Neil:

 

Woah

what a tone

 

He could have sent you the minutes in the time it took him to tell you the excuse he's found to deny your reasonable request.

 

I’d ask him to provide everything from Jan 2015 (or whenever your initial email was dated minus 10yrs) onwards based on that reply

 

He's just shown his hand, hasn't he - he's playing the 10 year card.

But really, what's he hiding? Have they really just deleted all record of the minutes of the meeting, or, are they just refusing to share what they have because it's over ten years?

Still, the minutes would surely have to have been shared as part of the 2015 meeting for approval from the members, so, would need to be public record as of that date?

 

Had they even done the minutes within this timeframe after the meeting? A lot of places it takes quite a while for them to be typed and approved internally anyway so the idea they are from the meeting of Xth Nov doesn’t mean the minutes are over ten years before peters first request at all

 

As @PeterW has just posted on Twitter;

https://twitter.com/user/status/1874871208690470933


In an email he has shared it states that they have full copies of documents for the extraordinary general meeting in 2014;

https://twitter.com/user/status/1874871225543164079


So, have they destroyed them or are they just not sharing them? His email to @Peter Trewhitt seems to suggest 'not being kept' for inspection, ie. destroyed?

 

I just replied to Neil saying I wished to address these issues with someone else and sent the following to the MEA general admin email address, copied to Charles Shepherd:

Are we now in a situation where give someone enough rope and … … …

 

Whether or not the documents are available or legally viewable there is still no explanation for the convening of a meeting to make, apparently, no substantive changes to AoA. Riley's response sounds to me like bluster.

It is inconceivable that copies of the relevant documents are not available somewhere. And as noted, if they show there was a simple human error then all that is needed is to let everyone see what happened.

 

Smokin'!

 

It's beyond farce now. He's tying himself in knots over what he's saying to one and to another.

Agree, they just need to front it and say 'here's the documents, read it and weep, I was right all along' and it will all go away.

ETA: well, it might not entirely go away because it will spawn a whole other line of questioning about why they have obfuscated all this so much..

 

Neil says "and set out the proposed changes to the payments for services clause".

But there were NO CHANGES to clause 28 Allowed payments between the 2013 Articles and the document he says was the document adopted at the General Meeting.

It makes no sense at all.

 

Indeed. And at the same time, the AoA registered in 2014 does show logical amendment to the 2013 AoA regarding the ME Association's objectives, its property and allowed payments (including the removal of that loose "director's expenses" in Article 4 that was not present as a header in the rest of the document), and more specification on what happens in the case of dissilution..

See Dx Revion Watch's earlier side-by-side comparison of the AoA registered and signed in 2014 with the sudden replacement document that is a copy of the AoA registered and signed in 2013:

As you can see they show natural progression from 2013 to 2014, e.g. in Article 3 which was amended by having "restricted to the following purposes" removed. (If I remember right, then charities have to stick to their objectives, but such an absolute restriction in your government document can create issues when you branch out a bit as an aside on occasion.)

(edited to fix two typos)

 

This is beyond frustrating. They've got 6 trustees. Cannot one of them look at Articles 2013 and Articles 2014, as filed with Companies House, and compare them both with the document file dated 05.12.2013 which Riley is insisting is the document passed on 18/11/14 and confirm what we see?

 

I can't type much now, too poorly.

But well done Peter for continuing. And those last two sections of the email to Peter White seem odd, and possibly veiled language to me.

Did the CC give express, specific written approval for the payment of services clause? And when?
Also: full copies of the docs that were sent to members before the Nov '14 meeting, but not the minutes? What if the members decided they wanted Article 28 to ditch section (a) even if it was in a draft? (Although, not in the 11 MArch 2014 document.)

Very interesting there is some CC approval though, should be easy to verify with CC.

 

Something I mentioned before, but didn't go into much detail about, were the problems with the patient leaflets on MEA's website. While they are higher quality than those put out by many other organisations, and there is lots of sensible and practical advice, there are plenty of occasions where what is written is just not sound, and there are a few more significant errors as well. I haven't been able to do more than skim, so just a few random examples:

There are a number of occasions where "supplements" are recommended, such as:

and similar content in this Treatment of ME/CFS document. There are a number of questionable treatment claims in this leaflet on pain management, e.g.

There are epidemiological statements that are wrong, too, such as:

from this leaflet. There's some bunk about neuroinflammation and coenzyme Q10 in this cognitive-dysfunction leaflet; and plenty of simply wrong claims made in this POTS leaflet. There are the claims I mentioned on the other thread about pseudoseizures. There is also incorrect information about some medications, e.g. in this pain management leaflet:

No it doesn't! The gabapentinoids are structurally related to GABA but are thought to act by their effects on voltage-dependent calcium channels (specifically as α2δ ligands); they do not act as GABA agonists or positive allosteric modulators.

If anyone with more energy than I have would like to review them the leaflets are all now available for download here; I'm sure anyone who does will find many more examples of things that require revision:

https://meassociation.org.uk/free-literature-downloads/