United Kingdom: ME Association news

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.

 

That's not what I said, though.

I was suggesting social media managers usually respond by making a post telling the commenters that they were listening; then, once the process has been discussed and decided, telling them what's going to happen next. There's no earthly need to respond to them all individually.

Handled professionally it's a genuinely useful process, especially after a misstep has been made. It's bruising for everyone while it's happening, but it enables an organisation to hear people's views, learn from them, and do better in future. Handled professionally, a cock-up can be turned into something positive—look at the respect gained by Sonya Chowdhury and AfME when they listened to feedback, admitted they'd made a mistake, and apologised for it.

 

Thanks, Kitty, I'm sorry I misunderstood you! What you're saying would be ideal, I agree.

 

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.

 

In their defence...
"- I would be lobbying government for better care and research" - They are doing this far more than is visible to most members/public, as are the other charities. Sadly it's largely falling on deaf ears.
"- I would be setting up a framework for research and fund research" - They are funding research including key infrastructure projects like the ME Biobank and Brain Bank and the Ron Davis follow up. They are supporting efforts such as the open letter on a research consensus along with the other charities.

"- I would be networking with all the ICB boards to work with NICE guidelines ASAP "- This is a really big thing to take on and they had hoped ICBs would do it without intervention so were slow to act. Their new "special project" is a pilot in Bucks and they also helped in Suffolk I believe.
"- 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" - I don't think they see this as their remit/scope. I'd say they definitely lack skills in this space and shouldn't be attempting such a thing. A lot could go wrong if this was mishandled. I think it would need multi charity cooperation to fund and execute effectively as well as specialist comms expertise as the messages are very nuanced. Their Dr's surgery campaign is their first effort in this space and we have yet to see if it has any actual impact or what, if any, marketing objectives they have measured to evaluate campaign performance.

I'm not especially a fan, totally recognise the major organisational problems that people have flagged here and I think they've handled this particular issues hopelessly (especially with my professional hat on) but I do think there's a risk of becoming too critical and negative. Despite the odd sizeable gaffe caused by being out of touch or having a blinkered attitude, they do do a lot of positive work and are very respected by key institutions.

 

No worries, I can write a lot of verbiage and still be as clear as mud!

I sort of understand why the MEA made this mistake, because I've seen similar things happen. It should be obvious that a planned action is seriously misjudged, but nobody can see it because they're stuck in their own bubble.

The resulting bin fire isn't necessarily fatal if it's seen to be managed well. In this case, that would have been understanding that Neil Riley couldn't continue as chair, and that MEA wasn't engaging properly with its user group.

I've long believed groupthink should be on every organisation's risk register. That would at least mean it gets discussed and evaluated at regular intervals. Can't say I've ever convinced anyone to do it!—but it's behind so many failures and so much reputational damage.

 

There is most defiantly a Pem state and we need everyone to understand this.

The lived experience should be at the forefront of our understanding and knowledge, that is how illness works, you have symptoms and you measure them. Just because we know certain symptoms belong to a disease, does not mean we know everything there is to know or that all illnesses have to follow what we know. We have to look at PEM because that defines this illness, much the same as the sweet smell of urine that indicated diabetics before testing was introduced. Cause and science is secondary, first log the symptoms.

I was talking to a supportive cancer nurse in a meeting about ME and PEM and I asked her if all the patients followed the same symptoms or trajectory and the answer is no. So why should PEM?

Just take sleep with those with ME. When out of PEM people have problems with either sleeping too much or not being able to fall asleep, but both have unrefreshing sleep. Either way, it is a problem with sleep. Does this change when going into PEM or stable in PEM and does it change when you are coming out of a PEM state and then go back to your normal ability/baseline? I think we should start looking at these three stages of PEM.

Mostly people with ME cannot deal with answering these questions and would not realise if they were struggling, but you can teach people to look for the PEM or reaching the end of their ability/envelope (again however you want to put it) it is a matter of knowing how to look for the signs. A face to face tutor for instance, can be taught how to look at the movement of the eyes for signs for zoning out or colouration around the eyes (most good tutors can tell you about this without being asked). They can look how the pupil is taking information in or how that process is changing. How the pupil is reacting to screen movement or sound. In hospitals this can also be taught, you may not get if perfect but you can most definitely see changes that allow you to guess what is needed. Carers do this on a day to day or hour to hour basis, so learning from them is paramount. They do this without knowing but if you listen for the keywords and you know what to listen for it is simple to pick up.

Then you look for impact on ability going forward. If their ability to move/accept sensory input declines, then you know the pupil/patient is going into PEM. This then can be tracked by symptoms, which can be increased or of a new nature. Then main issues, that normally indicate a further decline is, more sleep problems, more POTS, mast cell and gut issues. Then you watch and wait (but mostly hope) for the decrease, while being gentle with how they wake, eat and move.

The visible app, may help give us data and AI may help if the information was collected and I wonder why after so many years that more is not done about this. The PACE trial authors took apps away for good reason and that also includes Crawley and the FINET app.

I don't think it helps to track symptoms for the patient, but for us carers and researchers it is vital. Understanding that process especially when someone is very sick and declining, is life saving.

 

Facebook post:

ME Association Post AGM Statement

https://www.facebook.com/meassociat...YoXeVjqU8VdK8PaQYboHFjuRBTXys58l?locale=en_GB

is open for comments.


Also the same post on Twitter is open.

https://twitter.com/user/status/1866172381620003123


ME Association Post AGM Statement Thank you to all our members who joined the ME Association’s AGM on Monday 9th December 2024 at 2pm, we value your contribution. Read in full here: https://meassociation.org.uk/agms #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #Research #AGM2024

 

Insightful summary of the AGM:


https://twitter.com/user/status/1866761741524164752

 

I haven't read the rest of the summary but I was stopped in my tracks by this. For an ME charity to make sick PwME sit through an hour of this kind of non-business before getting to any kind of useful items or the opportunity to contribute is appalling. I would imagine a lot of the audience would have been spent by that time.

 

One of our group attended and has produced a transcript and audio record. DM me for details.

 

I did wonder when Doctors withME was being developed whether it would have been better for Charles shepherd to recruit them to MEA to enhance the medical offering and succession planning.

 

Unfortunately one of their team has an idiosyncratic writing style which in my opinion is a barrier to effective communication.