Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

[MrMagoo]

So what are the challenges to overcome in the situation?

TPN is being given at Conquest Hospital.

Conquest Hospital seem to be saying they can’t let her stay much longer.

Conquest Hospital and the local Health trust don’t do TPN “at home”.

The resolution she wants is TPN at home.


What is on offer is

-transfer 100 miles to St Marks for treatment. They will do home TPN in exceptional circumstances, but have indicated they will not confirm they will do it.


Without having the “full facts” it just seems like a weird brinkmanship to me. I’m not understanding why St Marks is the only option here. In addition, TPN in hospital has clearly been working over the past 12 months at Conquest.

edit- to “de-person” the info.

 

[Haveyoutriedyoga]

Regarding ambulance travel, I read somewhere that there is a new device that acts as a stretcher sleeping bag sort of thing, that distributes itself around the persons body and then goes stiff and wraps them tightly in shock absorbing padding, does that ring any bells to anyone? I’m sure I read about it in some sort of advice pack for people with MECFS travelling by ambulance, whilst researching hospital adjustments.

The advantage is that you aren’t as much at the mercy of physical sensory input.

 

[Jonathan Edwards]

studies such as 2 day CPET are nonsense

I was specifically referring to the idea that anaerobic thresholds are crucial. I don't think we have any evidence for that. More generally a reduction in output on CPET on day 2 is interesting but we don't have good reason to think it is what makes people feel worse.

 

[Jonathan Edwards]

How are we going to get that evidence?
You won't find many volunteers to test out the theory.

I was thinking of that when I wrote that!
A surprising number of people volunteer for 2 dy CPET studies it seems. But the studies never seem to test for what symptoms people have after day 1. If I had bad PEM I would say no thinks to day 2.

But I wouldn't recommend that approach anyway. The question was the motivation for the suggestion I made some time back that we need long term actimetry studies to look at PEM in real life. The idea is like having an aeroplane black box reader so that after 6 months you can play back all the patterns of movement and relate patterns that indicate activity likely to have involved a lot of exertion with subsequent symptoms (by diary maybe) or other patterns of movement indicating that poem has forced a reduction in activity.

There would be no intervention of having to do more. Just observing the time course during the ups and downs of the disease.

 

[Sasha]

But I wouldn't recommend that approach anyway. The question was the motivation for the suggestion I made some time back that we need long term actimetry studies to look at PEM in real life. The idea is like having an aeroplane black box reader so that after 6 months you can play back all the patterns of movement and relate patterns that indicate activity likely to have involved a lot of exertion with subsequent symptoms (by diary maybe) or other patterns of movement indicating that poem has forced a reduction in activity.

There would be no intervention of having to do more. Just observing the time course during the ups and downs of the disease.

This seems like a great idea. How can we make it happen?

 

[Jonathan Edwards]

This seems like a great idea. How can we make it happen?

Why, set up an exemplar clinical unit of course!

 

[Trish]

We've been asking for longitudinal studies like this for a long time. I don't see why someone can't do one with proper funding.

 

[Sasha]

Why, set up an exemplar clinical unit of course!

But seriously, this is exactly the sort of thing that would need to be done by patients at home. We could just be given monitors and left alone. I'd have thought it was cheap and easy, relatively speaking.

I don't want to take the thread off-course, though. If there's any interest in discussing it further, we should probably start up a new thread.

 

[rvallee]

I don't think we have good evidence for ME/CFS being worsened by taking someone in an ambulance 100 miles.

I'm actually curious about what would even constitute good evidence for this. How would that even work? What kind of such evidence would be considered good? How would it involve anything other than surveys of severe patients all reporting that the bar for significant worsening is far lower than this. Or case studies? Or interviews? Which are very difficult to do and are basically never done.

This isn't even philosophical or epistemological, neither medical academia nor health care systems have the ability to produce such evidence. It can only come from patients' reports, and of course this is an issue in which most 'experts' would not just say otherwise, but dismiss this concern entirely as being unfounded 'fears'. My intuition in this case is that this usually comes from consensus from experts. But here the consensus is unreliable and generally flat out wrong.

To me this is a bit like asking for satellite photo evidence of a hurricane in the 16th century, which would inevitably lead to questions such as "what is that photo thing you speak of? and what the hell is a satellite? and what's a hurricane?!" It's just not going to happen, those systems are completely out of their depth here without the help of technology giving a clear answer.

But for sure it causes significant worsening. Hell you're familiar with what people with severe ME have reported, someone simply being in the same room, a tiny bit of light, any noise, causes miserable suffering and worsening. It would be terrible for her. Of course possibly worth it if it's the only option, but here we're basically talking about slow agonizing death with your leg stuck under a boulder vs hack off the leg and hope the massive bleeding doesn't kill first.

It might be worth it. Or it might be that she gets moved onto the care of someone who will fully own the biopsychosocial approach and make everything worse. That's always on the table. This isn't like doing something hard for a high chance of payoff, it could literally be all worse. It can always get so much worse, that's the one promise that always gets delivered for us. That has to be part of the calculation.

 

[Jonathan Edwards]

We've been asking for longitudinal studies like this for a long time. I don't see why someone can't do one with proper funding.

I think Fluge and Bella have tried to make a start on this.
But you need investigators who understand the point of the exercise. I often wonder if anyone not a member of S4ME has that understanding. We are beginning to see young scientists who want to get to grips with ME/CFS but as for clinicians I have yet to see anything much.

 

[Jonathan Edwards]

We could just be given monitors and left alone. I'd have thought it was cheap and easy, relatively speaking.

That part yes, but the analysis of the data would require both detailed clinical insight and high level mathematical method knowledge.

 

[Jonathan Edwards]

I'm actually curious about what would even constitute good evidence for this.

I think it may have to come from completely objective evidence from actimetry. Not just measures of periods of exertion but measures of subsequent reduction in activity.

You might say that this would never show anything - but that is what Sarah Tyson has said, probably because it doesn't suit the purpose of selling rehab treatments. If we believe that actimetry can tell us something useful about how well people are then there ought o be a detectable PEM signal in the pattern.

 

[forestglip]

That part yes, but the analysis of the data would require both detailed clinical insight and high level mathematical method knowledge.

It seems this could be made more feasible if it could be separated into two distinct endeavors.

One research group can focus on large scale, high quality data collection with actimetry. They'd simply make the data available for others. Then groups with more expertise in data analysis could mine the data for insights.

 

[Sasha]

It seems this could be made more feasible if it could be separated into two distinct endeavors.

One research group can focus on large scale, high quality data collection with actimetry. They'd simply make the data available for others. Then groups with more expertise in data analysis could mine the data for insights.

Wouldn't there be a risk of a whole lot of post-hockery and over-analysis requiring wiping out findings by correction for multiple analysis? Better to prespecify analyses, or at least data-mine on half the data and seek to confirm on the rest? I'd be a bit worried about a free-for-all, although presumably these issues have been thought through for DecodeME's making their data available to other groups.

 

[Jonathan Edwards]

It seems this could be made more feasible if it could be separated into two distinct endeavors.

Nobody is going to fund 'we intend to make a whole load of measurements and hope someone else can figure out what it means. More seriously, the design of the sensors is going to need careful thought in relation to what is going to be analysed.

 

[wigglethemouse]

The question was the motivation for the suggestion I made some time back that we need long term actimetry studies to look at PEM in real life. The idea is like having an aeroplane black box reader so that after 6 months you can play back all the patterns of movement and relate patterns that indicate activity likely to have involved a lot of exertion with subsequent symptoms (by diary maybe) or other patterns of movement indicating that poem has forced a reduction in activity.

There is the Stanford Synder Lab Crash Course study that monitors ME/CFS, Long Covid, and chronic Lyme with a FitBit over a period of 3 months.
https://snyderlabs.stanford.edu/crashcourse/

The Crash Course study aims to understand why crashes occur, the differences in crashes between and within individuals, and ultimately how to predict and prevent crashes using wearable devices.

And more info about it here on the OMF website by @MelbME
https://www.omf.ngo/studying-pem-flares-me-cfs-ptlds-long-covid/

Participants in the study will provide small blood samples using a finger-prick method at various times. We’ll need samples from seven normal days and seven days during a flare-up, collected over about three months. During the study, participants will also use wearable devices like FitBit and apps to track their symptoms, providing us with continuous data.

[Edit to add]

Beginning some analysis of early data has identified hemodynamic data differences in all patients on an average day vs a crash/flare day.

 

[forestglip]

Nobody is going to fund 'we intend to make a whole load of measurements and hope someone else can figure out what it means. More seriously, the design of the sensors is going to need careful thought in relation to what is going to be analysed.

Or something like DecodeME, where the original group does do some analysis, but the data is also available for others in case they have other ideas. Mainly, I'm in favor of open sourcing data whenever possible.

 

[forestglip]

There is the Stanford Synder Lab Crash Course study that monitors ME/CFS, Long Covid, and chronic Lyme with a FitBit over a period of 3 months.
https://snyderlabs.stanford.edu/crashcourse/

And more info about it here on the OMF website by @MelbME
https://www.omf.ngo/studying-pem-flares-me-cfs-ptlds-long-covid/


[Edit to add]

I don't know if this is a separate project, but @MelbME was talking about using actimetry using a different device a few months ago:

Yes wearables are actually a cheap way to produce a lot of information that is at least reliable to the individual and therefore delta change is useful.

We have been trialling these devices called activpal to look at position for the purpose you highlight. https://www.palt.com/why-activpal/
It's the only device we found that is reliable with position.

 

[Jonathan Edwards]

I continue to be very confused by what is going on in individual cases. It is uncomfortable to refer to details online but I am not sure how else to get things clearer.

I wonder if the real issue is the refusal to set up PEG, if TPN is already in place and home TPN is not an option. But TPN can be given either through a temporary line or something more definitive retirement a placement procedure.

I am also wondering is anybody has heard of any cases of severe ME/CFS requiring artificial feeding support under age 18?

 

[Sean]

I think it may have to come from completely objective evidence from actimetry. Not just measures of periods of exertion but measures of subsequent reduction in activity.

I think the overall long-term pattern is going to provide very most useful data. Short-term needs to looked at too, but one thing we don't have yet is good long-term tracking of these kind of variables.

Nobody is going to fund 'we intend to make a whole load of measurements and hope someone else can figure out what it means.

Building a collection of this kind of baseline data is done in other fields, like geospacing/mapping. These kind of data sets are so rich and widely applicable it is difficult to justify building them on the basis of a few specific limited research proposals. Their real value is in providing the raw data from which to begin analysis, with an eye to producing testable hypothesis generation. It is the kind of project that needs a broader long-term view, with delayed pay-offs. Which is increasingly out of favour in the short-term view world.

More seriously, the design of the sensors is going to need careful thought in relation to what is going to be analysed.

True. But the data that some measures provide is almost certain to be very useful by default, as long as the data quality is good. What actimeters are measuring – movement patterns over time – is very unlikely to not be useful for understanding ME/CFS, given it is almost defined by reduced activity capacity and abnormal responses to activity. We don't need to know what it will reveal to justify doing it, just that is is highly likely to reveal, either way. In a similar way to broad scale genetic mapping.