United Kingdom: ME Association news

His contract as initially a volunteer then a paid Medical Director and Medical Adviser to the MEA was terminated in May 2003. He then stood for election to the BoT in the December 2003 trustee elections:


Report from the pulled December 2003 issue of ME Essential (copy on file):

Surprise resignations by trustees after new Board is elected

"CHARLES SHEPHERD was elected a trustee of The MEA at the
annual general meeting on 6 December prompting chairman Ann
Campbell and fellow trustee Niccola Simpson to tender their resignations
and issue statements to ME Essential (see page 3).

Both trustees said they could no longer work with Dr Shepherd, whose
contract as medical adviser of the Association was terminated in May
after he started mounting an internet attack on the policies and management
of the Association.

Votes cast in the election of new trustees were Mr Chris Ellis (34),
Christine Llewelyn (33), Angela Flack (33), Charles Shepherd (32).
Niccola Simpson, who was standing for re-election to the board, polled
15 votes. Their pre-election statements, circulated to members
attending, appear on page 8.

About 50 people were present. There were lengthy discussions after
association accountant George Achillea said no vote was required on the
Report and Accounts as the law required only their consideration by the
membership. Companies House and the Charities Commission had
already received copies because the deadline was 31 October.

At the Board meeting immediately afterwards, Chris Ellis was elected
caretaker chairman, Rick Osman remains vice-chairman and Charles
Shepherd agreed to be caretaker company secretary.

Ann Campbell and Niccola Simpson both resigned and it was
announced that the Chief Executive's job was made redundant by the
outgoing Board with effect from 1 January. There is currently no
treasurer as Peter Stewart has resigned this position, although he
continues as a trustee. As there are only six trustees remaining and,
although they are quorate, there is an immediate need under the M and
AA to co-opt at least one new trustee to bring the number to the required
seven.

At the time of going to press, the new Board plans to meet again at the
end of January 2004."​

Note: The magazine was sent out in January 2004 minus the statements by Ann Campbell and the late Niccola Simpson on page 3 of the magazine. Chris Ellis resigned from the BoT not long after he was elected and issued a statement published on February 18, 2004 on the old Yahoo MEActionUK Group, run by Stephen Ralph, setting out his concerns for how the new board was operating (copy on file).

 

More from the Mem & Arts:

Alteration of the articles

47.
(a) The company may alter these articles only by a special resolution. A special resolution must be passed at a meeting of members of which 21 clear days notice has been given of the intention to pass a special resolution and at which 75% of those voting must be in favour of. Such a resolution may be passed on shorter notice if 95% of members having the right to vote agree."​

 

The @MEAssociation published an article by their Chairman in the ME Essentials Magazine in which he condescends and mocks ME patients.

I’m utterly astonished that they felt it was appropriate to publish this.

Thank god I withdrew as one of their
'Champion Bloggers'.

#PwME

 

So sad that the MEA gives prominence to such a significant failure to understand the central symptom of PEM. How can they publish this glorification of what is essentially a formulation of GET without any allusion to the concept of PEM?

All other things being equal humans have evolved to be active, but in ME/CFS all things are not equal. It is tautological to say that improvement is correlated with increasing activity but how many times do we have to point out that correlation is not evidence of causation. We lack evidence to say that rest helps the underlying condition but we do have evidence that over exertion can worsen, for some permanently, ME/CFS. Further though anecdote may offer hints for research, in evidence based medicine it can not be used as a basis for treatment recommendations.

How can someone in such a position within the MEA be so unaware of the battle between maintaining physical condition or basic fitness and avoiding worsening our condition through PEM that the majority of people with moderate or severe ME face on a daily if not an hourly basis? It may be that some patients consistently choose to do less than they safely can, but I suspect they are very much the minority if they exist at all. Certainly my life is a constant pushing against the activity ceiling my ME imposes on me, whilst simultaneously trying to avoid worsening my condition through PEM.

Not only does this editorial reveal an ignorance of the basic principles of science it also fails to understand the nature of ME and the daily struggles of life with ME. This editorial is worthy of the BPS grandees who do so much harm to people with ME.

[corrected typos]

 

So that's twice in 5 years Neil Riley has been given a platform in ME Essential:

ME Essential Issue 150, p 23 Summer 2019:

A lifetime living with ME...
An Older Person's View
MEA Chairman, Neil Riley, tells his story

https://www.s4me.info/threads/me-association-magazine-summer-2019.10788/#post-191812


Neil joined the forum to post this in the 2019 thread above and never posted again:

https://www.s4me.info/threads/me-association-magazine-summer-2019.10788/page-2#post-192544

 

An Open Letter has been created on Google Docs:

https://twitter.com/user/status/1858303736323661971


Fran Haddock @franhaddock_

There’s an open letter here by
@alexis___me
, ppl can add their name (@ any letters & patient status) to the end https://docs.google.com/document/d/10JWitoNxMafyi7KeSO4pjoIpM51PH3bf3z0CWUdYOUw/edit
Also a draft complaint here to email individually just pls edit & personalise: https://docs.google.com/document/d/1DA8GACemuW6WZw_m_RJCzX2sif710w3Iz-F2HqWk-tg/edit… To: meconnect@meassociation.org.uk


Google Docs letter for adding signatures:

https://docs.google.com/document/d/10JWitoNxMafyi7KeSO4pjoIpM51PH3bf3z0CWUdYOUw/edit?tab=t.0

Google Docs draft complaint:

https://docs.google.com/document/d/1DA8GACemuW6WZw_m_RJCzX2sif710w3Iz-F2HqWk-tg/edit?tab=t.0

 

I read the original Tweet and thought this could have only been an article from a decade ago, but then re-read the article and no, alluding to the social media mob (mob not being the actual word used, but it is, imho, what he meant and speaks volumes to how he [and I guess whoever reviewed the piece and thought it acceptable to publish] sees those of us who are still able to express opinions on Twitter and other platforms) reaching for their keyboards, it must have been far more recent.

MEA frequently remind me why I stopped paying my membership a number of years ago.

With AfME dropping Twitter with no real strategy for other platforms and now this, we are so poorly represented. Who knows maybe this is some subtle coordinated pushback to the keyboard warriors as they see us, but that would probably give both orgs too much credit for their ham-fisted efforts.

 

The Sir Simons, the Garners and the Oslo Consortiums will be rubbing their hands in glee as this editorial basically echoes their main points of attack on the current NICE guidelines.

 

Re the MEA's forthcoming AGM.

Notice of General Meetings

33. An annual general meeting must be called by giving at least 21 clear days’ notice in writing. Other meetings of the company must be called by giving at least 14 days clear notice.

These notices must specify the place, date and time of the meeting and the business to be discussed. Notice of the meeting must be given to all those members entitled to receive it and to the reporting accountants or auditor of the company. Notice of the right of a member to appoint a proxy must be given in the notice​

If the AGM is still scheduled for 9 December, "21 clear days' notice in writing" requires receipt of written notice today.

Can a member let us know please when the magazine containing the AGM notice, postal vote forms, statements by those trustees re-standing for election and statements from any new nominees for election has been received.

 

what an utterly strange thing to decide to do

and more importantly it just feels very badly written whatever the intention (if there is one - so why 'just opinionate' to show who you are?) particularly in the sense that it seems to show an unawareness that there are different severities of ME, and indeed his personal level isn't mentioned even though all this is indeed based on recommending what he does.

And then he barely caveats this lack of responsibility given the horrific situation for a number of people with very severe ME in hospital in the last few years with:

" of course there are some with ME who are extremeley ill, confined to bed, for which my remedy would be totally wrong"

That he's placed at the end of the penultimate paragraph which to me smacks of avoiding the primacy-recency of it being even in the last lines. We and he should be well aware the last people to read to, nevermind provide weight to that line, will be those who have their beliefs and are looking for things which agree with what they want to hear. Hence irresponsible, in fact gobsmackingly so.

I underline this because he has chosen not to begin at the start with that safety caveat or explaining the overall illness and spectrum in a proper attempt to safeguard the impact of his opinion, but to hide it where it is. ANd by doing so chose not to contextualise properly his 'advice' as not being advice (and to whom it applies) - hence the irresponsible at best.

But also to me gives a sign of being out-of-date in understanding you can't just island the constituency of those most ill with an 'of course I'm sure they will be looked after with something different' get out of jail free clause, and split the spectrum. At least some of those in that situation will have ended up there due to the world taking advice based on things that have been written in similar ways which can be similarly misinterpreted such to cause harm inadvertently, or indeed due to the GET attitude - and now find the type of tropes this article seems full of until that last caveat are being thrown at them once they are harmed to such an extent.

You surely can't have someone who has this lack of understanding of how risky what they've just done is to the most vulnerable in their population. The least someone can do if they are using 'the name of' is to always be thinking safety first - and this fails utterly in that care in my opinion.

All the rest around it sophistly trying to justify why he has done this strange thing just seems worded to be antagonist by trying to hide that analysis of his main points ie not take responsility for the need to have properly worded them even if he does believe in them to not cause that harm in the first place [that he's had to try and 'cover for' with a poor caveat - and I use that term like the CMA would, where someone puts a line in small print at the end clarifying 'that's not strictly true' etc] by writing those words poorly.

I agree with @Peter Trewhitt - and, in fact, the language chosen indicates allegiances too, because noone who is in the position he is for so long is unaware of the antagonistic sophist terminology chosen by certain individuals.

It all just feels very silly and irresponsible from a number of angles but particularly professionally because it really I struggle to see has no benefit whatsoever as written to either the organisation or its aims. Plus of course it serves neither as good advice nor as an insight into his own experience that would provide some sort of comfort to other sufferers even if he is telling himself it would achieve that.

The man could at least have dated when he did this bed rest he talks of, and his severity at that time; particularly if it was advice given to him that was generation-specific and done to a level not accessible to most in recent decades etc. He must know that without that information he infers that was/is 'normal' or 'common'?

 

And yet, whoever has editorial control of the magazine's content signed off on it.

I wonder if Neil is retiring this year? (He appears to be 79.)

If he's up for re-election at this forthcoming AGM, he's just shot himself in both feet.

 

I have no words for the Neil Riley article. What on Earth? Is there no one at MEA who thought to challenge this? Do they not have any guidelines for contributors? Literally insulting the membership is ok? There should be an expectation that you can share your own experiences but not make unfounded generalisations about others. The implication that the minute we all became ill we just took to our beds and stayed there... couldn't be further from the truth. Has he ever met another ME patient?

 

His 2019 offering was bad enough...

 

How many carers have read Neil Riley's articles, and possibly concluded that an official of the MEA must know better than the person with ME they care for? How many new patients have read those articles and thought that Neil must know best?

 

Occasionally, I have to gently explain to well-meaning friends who only see me at my brief, fast-burning best why I wouldn't feel better if I 'just went for a short bike ride'. I'm gentle about it because I know they're trying to help me because they care, but of course they only know about ME/CFS from the media and don't realise that their advice is dangerously wrong.

I also understand that they don't mean to be patronising, even though they are being. They're assuming that in all the decades of my illness, it never occurred to me that inactivity would decondition me and that I should try to do more if I could. They say this stuff because society has taught them to think that PwME don't do this, because obviously we'd be better if we did.

I never expected to see this 'Silly patients! If you only just tried...' stuff in an MEA editorial.

 

We know bedrest on the scale of weeks to months has consequences for our bodies, but, at some point, in ME/CFS, bedrest is likely a net beneficial, compared with trying to push through each day. There's no objective testing to show us at what stage this occurs, and it's likely different in each patient, and changes temporaly. We are all just guessing, using our intuition, and it's deeply frustrating never really knowing whether we are doing the best thing for our bodies.

In this respect, the piece is crass, insensitive, and doesn't acknowledge these unknowns. Neil's caveat about people 'who are extremely ill' is not enough, because it's often a guessing game for each individual patient as to which group they belong in.

 

Indeed - the only people ‘in bed all day’ are the very people he hides the claim that he excludes from this assertion at the end of his penultimate para - so it’s actually inadvertently targeted at them... certainly all the way until that line maybe gets eventually read. Which is how misinformation works, these messages get in first then the 'debunk' is too late.

is there a phrase mildsplaining just like recoverysplaining - but that needs a better term because it infers people had ‘the same thing’ except you wouldn’t get someone treated for pre-cancer making opinions that happily all the way through seem to suggest if only those stage four behaved as I did etc

then there is the whole new level privilege of circumstances particularly plays into making someone more ill or less ill in me/cfs due to stigma like this and misguided ‘support’ along with those who have to do manual jobs or more physical commutes , live in bad accommodation with noise issues and can’t take sick leave when they first get ill etc being ‘make or break’ in outcomes

IF you got these basics then all of this feels very old fashioned as a ‘chat’

and yes it’s so obviously straw man that it’s worrying from a representative even if it was inspired by recent Twitter X from certain non-ME experts (so why choose no references?) - it sounds like someone who hasn’t heard or doesn’t know about those constituents they represent but yet is speaking to who they are based on presumption.

The last thing any person needs ‘on their behalf’ to the extent one could call it using your own service users good names and reputation. When you hold the responsibility this position comes with you don’t have the freedom to not reference where it came from otherwise it’s directly implicit that it IS them?

 

But what is the sign-off sheet for this particular part of the magazine given it is called the 'from the chairman' part?

If it is administrators but they get over-ruled if they flag things, and there isn't someone above the chairman in this sign-off then there wouldn't actually any editorial control or proper check on it - editorial control would in that case lie with the person who also wrote it, because the person with the control/sign-off is the same person who was the author?