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

A small team might be able to go but the procedure probably requires a complete set up with theatre and recovery space and continuing monitoring by an experienced team for a period of days. Trying to move that sort of thing around creates other risks, some of which you may not be able to predict until too late.

There can come a point in medicine when you have to make difficult decisions about risks. I don't think we have good evidence for ME/CFS being worsened by taking someone in an ambulance 100 miles. Very likely this is not the part that they have got stuck on but I am not always sure that teams can be accused of being unreasonable. In a health service in which everyone is getting poor service because of inadequate resources there may well be issues of risks to other patients from delays

 

I was taken on a 120-mile trip by ambulance to a distant hospital to have my OI investigated in a specialist department. I lay down on the 'stretcher on wheels' thing all the way. I was really shocked by how bad the suspension was in the ambulance - it was far less smooth than lying down in the back of a car. I got shaken over every bump in the road for two hours.

I don't know that it made me worse - not being vertical was a massive benefit - but I'd worry about a sicker patient having to endure it.

I wondered whether it wasn't a normal ambulance. Maybe they use older, rubbish ones for patient transport over distance.

 

I can understand that it would probably be distressing and might take a good time to recover from but there are time sin medicine when that is more or less unavoidable. I have been in bumpy ambulances with spinal pain, renal colic and vertigo and it was pretty terrible but I got sorted out and we don't have an MRI scanner in our sitting room.

There are certainly rubbish 'school bus' type ambulances that are worse than the usual hi-tech emergency ones.

 

I don't see why not.

 

I came across this voluntary organisation while googling on the RDE hospital site

Along with the other hospitals in the area, the team are active members of the charity PINNT (Patients on Intravenous and Nasogastric Therapy) and organise patient support groups twice a year. We also work closely with the team from Talking Health, Devon Partnership NHS Trust to make sure our patients’ psychological needs are met.

https://pinnt.com/About-Us.aspx

Imagine being unable to nourish your body from normal food and drink...
Instead you have to rely on liquid nutrients being pumped or infused into your body through a tube. This maybe Enteral or Parenteral. This is your lifeline. Hopefully you won't be in hospital but will be in the comfort of your own surroundings. If this applies to you then PINNT are here to help.

 

It is frustrating that there is so much we don’t know. However in the UK the debate about theory, about is it psychological, who is the appropriate specialist, whether to start sectioning, whether to treat by exposure/habituation, etc leaves the person with very severe ME who is also unable to maintain adequate nutrition in rolling PEM and malnourished and dehydrated. So it is then not clear how much is the ME and how much is down to mismanagement and may be reversible with adequate nutrition and the right sensory setting.

We are in the UK addressing non oral feeding too late and with no sensitivity to the hierarchy of options for this patient group. Most health authorities don’t have appropriate ME/CFS specialists, but do have staff able to address most of the alternative feeding methods in other conditions so their skills would easily be transferable to patients with ME.

A relative in her 60s had mysterious gastric issues, and she was passed from consultant to consultant much to her and her family’s frustration until her weight dropped to a certain point when they kicked into action, started PEG feeding. Over several months she regained most of her lost weight and subsequently had a number of years of oral feeding and reasonable health. The underlying condition was never identified but once they responded to the symptoms her health improved dramatically.

In relation to ME, Whitney Dafoe in American has been successfully tolerating PEG for some years, demonstrating that at least for him timely introduction of non oral feeding can stabilise/halt decline and even improve the individual’s health.

Parenteral feeding is obviously much more complex than PEG feeding and has higher risks, but I suspect it does happen in most health authorities for other patient groups, so why not people with ME?

[sorry forgot I had posted this and continued editing what I thought was a draft long after posting]

 

The problem is that being transported will definitely produce PEM, the evidence for that, the only evidence we have, is umpteen people with severe ME saying that travelling produces PEM.
I am nowhere near as ill as KAren, and I can testify, from long experience of doing it to visit family, that without exception 2 hrs travel, laid fully reclined in a car, with a stop to vomit every 15-30 mins, will make me completely bedbound in a silent dark room for around 6 days. I have to book a trip for 10 days if i am to see them at all, and then expect at least a 2wk recovery on return home, when silent darkness is essential and during which i feel so ill its no longer worth it even to see them. Indeed it am much too ill the last7 or 8 yrs to even attempt it.
And that is in a car!

The vibration of an ambulance would be, well i cant even imagine!

So i want to make it plain that the issue with It's not that it's "distressing" being shaken about in an ambulance, any more than the problem with being on a ward instead of a side room is that the sensory stimulation is 'distressing'

- PwME can endure all kinds of temporary distress, and do, every day, in order to do essential things like personal care.
But the impact of the vibration of approx 3 hrs in an ambulance, and then being put onto a noisy ward.

I mean just, no.

I dont know if I'd ever recover from that & I wouldnt do it if my very life depended on it. Truly. And I am only at the moderate end of severe.

And I'm not even anywhere near as bad as the case we're discussing.

It's not about the pain or the torture while it's happening, it's the lasting effect on the overall state of her ME/CFS symptoms and severity.

I dont know Karen or her family, and have read very little of all this, but I'd stake a lot on it NOT being about a reluctance to endure the pain and torture of the ride itself, but about the PEM it absolutely WILL induce, and the fact that it will be frankly impossible to recover from without a silent dark environment and not being expected to do anything except recover from the journey for at least 3 wks.
Which she wont get in an NHS hospital

The only way I'd personally attempt/agree to it, would be full sedation, and travelling in a car, and being put into a side room immediately on arrival. And then treated with kid gloves and compassion for 3 wks before anything else was attempted. Which lets face it she wont be.

It seems like perhaps some people think that this is about not wanting to face the agony or torture of a ride in an ambulance, because of how distressing it will be.

I honestly find that insulting. I'm sure she'd be willing to endure almost anything - willing to go through the necessary distress & agony of an ambulance journey. But the issue with travel for an ME patient is that it will make the underlying problem, worse, not that it will be an unpleasant experience.

We dont have 'evidence' other than patient testimony that GET makes people worse either, but we through long experience have finally managed to communicate that we're not imagining it....

If the patient says that it will make them worse, its because it will.

Edited to add: I'm not accusing anyone here of not believing her (have removed part of a sentence that made it seem as if i am). Nor am I suggesting she shouldnt go, I hope a solution can be found.
I'm simply saying that as a person who is impacted badly by travel, even in a low vibration car, & with every possible precaution and compassionate adjustment, it still makes me a lot worse, for quite some time afterwards and that should be taken seriously and not mistaken for reluctance to go through a tough experience in order to get what she needs. Help that makes it worse isnt better than nothing.

People think that if your life depends on something, you should always do it, but if doing it puts you into a state which is experienced as worth than death, with no certainty of improvement... ??? one tends to think a little differently.

Edited again to add: on reflection i'm concerned that my post sounds can be misinterpreted... obviously I am in favour of every effort possible being made to get Karen, and others what she needs, her life, the life of every person with ME especially the young, is valuable beyond measure and i support and am grateful for everyone who is trying to help, especially @Jonathan Edwards and other medical professionals trying hard to get to the bottom of things.

this post was just my rambling way of saying that while to non sufferers transport in an ambulance just seems like an unpleasant thing to be endured, that it's a kind of "needs must" situation. But for someone with SME it is a very very big deal. And i not sure its possible to understand that, unless you've endured it, and it's effects.

 

The problem we have, if we are trying to argue from evidence to get proper care is that we have no evidence that an ambulance ride will produce long term worsening any more than it would for someone with bone pain from myeloma or whatever.

And the alternative would seem to be dying of starvation. I am trying to build a case that feeding support has to be better than dying of starvation. If people with ME/CFS all say to me no they would rather die of starvation than be made worse then it shifts my argument.

I know I am sounding unsympathetic but we need evidence, somehow. Nobody has ever died of PEM as far as I know. That is a significant fact.

 

People have chosen to end their lives because of it, though, that's the worry. Very severely ill people are likely in PEM most of not all of the time.

I'd always start by arguing the same, but...theoretically, someone might say they'd rather not be fed if they had to endure X or Y to access it.

It's comparable to the way some folk who've been through brutal cancer treatment decide not to go through it again, because they don't feel the quality of life they'll have afterwards is worth it.

I hope nobody with ME/CFS will ever feel they're in that position, but some obstacles may be high enough.

 

Surely there is an appropriate hospital where TPN can be instigated which is less than 100 miles away?
I haven’t read back but I think there was more to St Mark’s than just the TPN

 

It seems St Marks are thought to have a strong psychiatric approach.

 

Yes I do see what you're saying... I think?

Would I be right in thinking that while you may well believe PwME that it will make them worse, we dont have any actual evidence (ie beyond anecdote), any proof with which to persuade or make policy from, that it will make the person worse, and that's what would be necessary to argue from an evidence based position.
And... that even if travel does make the person worse, surely its better than dying from starvation - ?????

I think that has to be decided by each person based on their own experience.

As it is for me, now, at my age, with my personal circumstances, it certainly wouldnt be better than dying. But I think if i were a young woman, with family to look after me, it would be - in the hope that at some point in the next couple of decades we'll get a treatment. After all, as you say, we dont know that PEM kills, and where there's life there's hope.

What I do see, is that Jonathan you are in a very difficult position, there are no easy answers and i have huge amount of respect & gratitude to you for giving so sacrificially of your time and knowledge to try to help us all. To try and get to the bottom of all this. The dedication you're showing is extraordinary & much appreciated.

 

Is there no decent evidence behind the Workwell Foundation basic anaerobic threshold theory (which Visible is based on) increased heart rate would be easy to demonstrate, we just need the studies which link it to PEM/relapse.

https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

 

I know we have no proof. But it comes back to people not really recognising that travel is exertion, the same way that sensory stimulation, or just thinking, isnt recognised as exertion. Travel is a sensory and musculoskeletal onslaught, its a massive exertion. And surely (?) it's recognised and established that ME/CFS symptoms are made worse by, PEM is brought on by, exertion - at least temporarily.

I dont know anything about bone pain from myeloma, but is the myeloma made worse by , or triggered by, exertion/vibration/sensroy onslaught?

Oh and also wanted to say that on the contrary Jo, I really dont think you sound 'unsympathetic' at all.
from my perspective you sound objective - which is exactly what's needed

 

exactly this

 

We want Karen to live, and, should anyone from her friends/family/loved ones are reading this, we passionately want Karen to live.... to get the best possible care

apologies if anything I said makes it seem like i think people would be better off dead! I do not.
We are with you and want the best for you Karen.

 

I've woken this morning feeling dreadful about what i said. Who the hell am I to comment about any of it really - I'm not in that situationand the last thing i would want would be for anything i said to discourage anyone from pulling out all the stops to save a life.

I was just trying to convey the seriousness of the impact that travel has on me, I obviously cant speak for anyone else.