United Kingdom: ME Association governance issues

Reading this thread is giving me a lot more very serious concerns.

MEA have:

• social media staff, but Dr Shepherd is on SM 7 days a week and some comments appear to have been hidden
• set up a clinics project, which has not started by asking the local group In that area what they are are already doing and involved them upfront
• Funded the PROMS project for use in clinics - they are working with - and shut down criticism
• Are setting up a forum for patients: will this also have strict rules for participation? Did any patient ask for this? Is this the best use of the money they are sitting on?
• They have plastered Doctor's surgeries with MEA literature, not educational materials on ME or pointing people to local groups (who often cannot get their own details displayed)
• They held an unconstitutional AGM and ignored that it wasn't
• Ignored requests for proxys
• Made it very difficult to get hold of a link
• Shut down the chat and filibustered their own meeting so it ran beyond the capacity of the people attending
• Recorded it and refused to say who would be able to access it
• Shut down complaints in the AGM about the chair's off colour editorial
• Are opening up a 'working group' to discuss movement Vs bed rest (really?)
• Fobbing off serious motions both requesting change and suggesting a way forward for change and fundraising

At the same time:

• numbers of PwME have reached 1.2million
• patients are being sectioned and dying in hospital
• the NICE guidelines have only been implemented in under 30% of local clinics, while being merged with LC clinics, as the latter are being defunded
• Cochrane refuse to withdraw their out of date and dangerous review
• those who insist it is psychological continue to try and control the narrative.

Have I understood the whole picture here?

Is it just me wondering if the MEA has actually been convinced by the BPS idealogy, and are working very hard to control the narrative around ME, and the patients are a frustrating obstacle as we are refusing to conform - and even worse - refusing to be grateful for their beneficence?

This is our most heavily funded charity and the face of our illness?

No wonder patients are having to step in and set up their own organisations. With friends like this...

 

This also concerns me greatly.Riley and CS seem determined to ignore WHY the evidence-base that NICE produced.

 

It’s a red herring. Nobody has ever said that pwME must stay prone in bed, and never get up.

Because Neil had to re-issue his tone-deaf essay on why “getting up and dressed every day is best” and he’s now received a backlash that he doesn’t really understand, they’re saying OK well let’s look into this.

It doesn’t need looking into. The point is (and he wrote the op-Ed pre-emptying the backlash “has he gone bps?”) he came across as paternalistic, judgemental, privileged, unhelpful to the cause and tone-deaf. He can’t resolve that because he doesn’t think he’s in the wrong. He doesn’t understand how he is wrong. So instead they will set up a working group to examine whether advice which was never given vs Neil’s advice, to see who is right (it’s Neil).

They need a working group on pale stale male revision, why synecdoches are problematic, and privilege.

 

It feels like undermining what they’ve achieved for some reason and muddying the few waters that were understood as clear even if misinterpreted (as just meaning you shouldn’t exercise pwme , totally unhelpful from an order of magnitude issue fir the more severe in particular).

frankly it’s weird and has happened over the last year I think so I’m curious of influences or if it’s always been there and some balance has been tipped or what’s going on.

frankly it feels like funds raised under one identity and campaign of who they are and what they’ve been suggesting surely should have a bit of an issue being used to fund the opposite , particularly when you consider the lack of staffing changes or anything to justify that I think when publicised it surely is more than a change of mind or heart when you look back at what was the brand and culture put out during that time of fundraising etc.?

 

So that ‘random’ article has been used as a straw man , and now that straw man further used to crow bar relegislating either pace, workwell foundation or worse I can’t exclude it being somewhat about the most severe.

it did seem contrived as a piece of writing at the time. If this is what happens it really is going to be only describable as blatant / obvious as a sequence of actions to achieve an end like that … surely not?

 

I am not sure about that. Patients needing feeding have been told that they need to be fed flat so that they do not suffer reduction in brain perfusion. At least one patient has said they were advised they would only get better if they lay flat for weeks or months.

But the strange thing is that this advice almost certainly comes from people very close to MEA.

That raises the question as to what actually is 'the BPS ideology'. Again, I see paradoxes, since it has often been the bPS people like Knoop and White who have spun ungrounded stories about biological complexities to ME/CFS.

I suspect the reality is more that various MEA members have beliefs about ME/CFS that are just as ungrounded as the BPS views and do indeed want to control a narrative and give the impression they are providing wisdom, when in reality they understand no more than anyone else and maybe less. There may well be differences in view between MEA individuals but there is a perception of a need to appear to be of one voice and therefore justify a claim to authority.

The whole thing is typified by the claim that 'ME is a complex multi system disease' - which sounds knowledgeable but can mean whatever you want.

 

An odd case of people being dissuaded from getting out of bed. Versus the slew of nonsense thrown at pwME about pushing their limits, “pacing up” GET etc. Not to mention the guilt and shame that we “can’t”. And Neil felt so strongly that it needed him to declare we should all get up and dressed every day, we need to move!

Are we getting fed flat in some places but must be at 40%incline (renegotiated down to 5%incline) in others?

 

Can you imagine how comfortable people on that working group might perceive they can be about providing input that isn’t what certain people want to hear. And what would be needed to achieve it?

Eg perceived coercion is probably the first major issue that needs to be tackled in ME/CFS research - and current affairs would seem to note what a topical snd now understood issue that is for vulnerable groups put in situations that hsvent thought about how to safeguard and remove and reassure this (after all not being sure you are safe is still perceived ‘better to play it safe’ ) so it’s something you’d hope they will be very hit on leading the way in with complete independence and transparency etc. in that sort of thing if they do try it. What conditions would make people qualified to answer the questions safe (and feel safe) to give those answers and those reading them believe that’s the full story etc ? It’s an interesting conundrum to ponder..


And not a similar approach of only reading through the page and noting what they see is termed as ‘positive’ or ‘helpful’ or whatever the phrase was fir PROM in the response made in recent history there from them ?

 

I am pretty sure that it is not just an odd case. I have reason to think that the advice to stay lying flat has been given to large numbers of people and particularly people with severe disease in major trouble. Moreover, this sort of advice is passed on to others.

I am not justifying Riley's remarks. Far from it. But there is no doubt that a significant number of people with severe ME/CFS believe they will come to harm from not lying flat, in a context where we have no good reason to think that is true.

 

Ah, this maybe the confusion. Neil was clear at the end of the article that he wasn’t addressing people who are severe.

So do we have mild and moderate people being told not to get up out of bed? In numbers which justify a working group to investigate pros and cons? Or is it the MEA creating busywork to deflect from Neil’s article?

 

So basically he was bullshitting ad lib.

If the MEA want any credibility then they should know that setting up an open label working group with subjective outcome measures to magically decide what is good for people with ME/CFS is exactly the same poor quality project as PACE. Maybe the problem is that MEA have never really understood what was wrong with PACE and what we need to gather some reliable data.

 

Sounds as though it went pretty much as I anticipated, yesterday.

Charles Shepherd, Neil Riley et al need to accept that trustees cannot continue to run the org as though it were their personal fiefdom.

 

I don't see it in that light. The panel on movement was merely intended as an off the cuff concession to appear to address the repeated complaints about the article. I suspect it was meant to be a way of kicking complaints into the long grass. I do not see any hidden BPS agenda there. It's just an inflexible, arrogant organisation run largely by old men who are fixed in their own perspectives and don't want interference from their client base.

Dr Shepherd did wax lyrical on the risks from deconditioning from absolute bed rest and shared his recent personal experience of bed rest making him frailer. Both he and Riley originally had an encephalitis apparently and seem to fit the type of early severe-ish with later improvements. But that's just one pattern.

Personally I kept going, trying to learn pace and just kept on deteriorating. I suspect for me it would have been more effective and safer to stop completely for a period and then learn to pace by gradually increasinf up to tolerance than try to keep going and try to gradually reduce activity when first introducing pacing as my functional decline definitely outstripped my ability to adapt and to learn to pace and put me into a dangerous downward spiral.

He did also suggest that the 25% be involved so did seem to want to ensure a panel balanced towards severe.

Edit - fix grammar

 

The was no suggestion of any form of scientific medical recommendations being made from the group it was just to share/collate and feed back personal experiences other than that relayed by Neil and Shepherd as several were shared in the meeting..

 

If I were a patient organization;
- I would be lobbying government for better care and research
- I would be setting up a framework for research and fund research
- I would be networking with all the ICB boards to work with NICE guidelines asap
- I would do mass media campaigns to get the public informed on the disease and let people know if you are newly ill rest to prevent damage

Instead MEA decides to be confrontational and insulting to patients.

Why are they choosing to have a discussion (with patients!) on resting versus activity?

I think patients that are ill for longer know very well to pace themselves within their energy envelope.

instead they should be putting the word out to the public at large that too strenuous activity after acute infection can keep you ill.

I wonder where I would be if I had been warned about this.

 

It seems to me that PEM (or what ever you want to call it) is not understood, looked for, tracked or individualised so that understanding of the core issue is seen. There may be 101 reason why PEM starts and once in a PEM state, there is a build up of symptoms that should be clear for all to see. However, I have yet to hear people discus the cycle of their PEM or organisations talk and explain what to look for.

In my experience; when supporting those that need and Education Health and Care Plan (EHCP) for school, as the attendance is limited and reasonable adjustments need to be put in place, this is the first place to start and you soon see an individuals pattern.

That to me is the biggest failure of Riley and ME Association, they should be able to explain PEM in layman's terms and put it broadly enough to show the importance. After all these years they should be fluent in the impacts, how it manifests and dangers of keeping in a PEM state?

 

Was there any mention at the meeting of a new annual report?

 

But the problem we have is that nobody knows, surely. And if each person is different no general account can be given. Moreover, we know little or nothing about the evolution over time even in individuals that might allow prediction or advice.

I am not sure we know enough even to talk of a 'PEM state'. There is a worsening of symptoms. That is all we know. I worry about talk of 'the dangers'. We don't know what they are and I worry that people get the impression they may become paralysed or lose brain blood supply when we have no good reason to think anything like that happens. It all seems to hark back to the Royal Free supposedly neurological 'ME' disease that has nothing to do with ME/CFS as we now understand it.

 

I think they said something would be produced at the end of their financial year (March/April I assume) covering the whole of 2024 to end December.

 

The 1970s/80s generation of ME Drs stated that patients who were advised to/could do full resting for the first 6 months had the best chance of improvement, recovery. I wish I'd been given that advice very early on, with the conditions to enable me to rest full time. Then I may not have ended up at 6 months in after the virus *unable* to move at all, unable to speak much of the time, barely breathing, not able to use a phone. Because I had tried to keep going - I mean who wouldn't if they had not been told they had a serious illness and must stop pushing? My full time rest was enforced by the eventual level of illness. Not a Choice. I had no idea what I had and no advice.

I worked out a kind of pacing eventually and was massively fortunate to have some improvement from being barely conscious in month 6. I'd heard the phrase 'Listen to your body'. Eventually I got to recognise my body's signals and followed those on whether to rest and how much rest, then working out I had to rest more that I first thought in order to not keep crashing. I never heard of pacing until about a decade into ME, but it seems many patients work it out.