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

[Jonathan Edwards]

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 would make sense of the situation if there was. I agree that there ought to be other places where TPN could be set up , of PEG. If St Mark's has been offered as a 'neurogastroenterology centre' specialising in 'gut-brain interaction', which would not be surprising then everyone concerned she perhaps think again. Maybe the carers have not been filled in on what the real situation is.

It is frustrating looking on at these situations without adequate information when I suspect that S4ME may be the only place where anybody is seeing the problem in a full perspective.

 

[Jonathan Edwards]

theoretically, someone might say they'd rather not be fed if they had to endure X or Y to access it.

And I am very aware that they do, but then my approach to tackling the problem and the arguments used would be different.

 

[Peter T]

I wonder if this obsession with a lack of specialist beds is rather yet more refusing to address the issue and part of the current attempt to pass the buck.

 

[Jonathan Edwards]

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.

Yes.

And... that even if travel does make the person worse, surely its better than dying from starvation - ?????

I don't assume that but if for cases where it does not apply the case to be made is different.

 

[Jonathan Edwards]

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.

I am pretty sure there is no evidence at all. I see nothing that indicates that anaerobic threshold is relevant. When someone wakes the next day, and the days after for weeks, feeling much worse there is no plausible reason why that should have anything to do with aerobic threshold being crossed some days before. And if PEM can be produced by bright light or travelling in an ambulance the whole aerobic threshold idea makes no sense. I am afraid that it is probably pseudoscience as much as the BPS theories. This is why I see the patient so much as wedged between two piles of nonsense.

 

[Jonathan Edwards]

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 fully understand what you mean by that and I think it makes sense and must have a biological basis. If I travel a long distance I find it makes me feel as if it is an hour later at the end of the day, even if it was sitting comfortably in a train.

But. We have no understanding in biological or scientific terms what this exertion thing is. It isn't any of the things the physiologists like Workwell study - at all. Science has no concept of exertion in that sense. As far as we know it has nothing to do with using up calories or energy.

 

[Jonathan Edwards]

I wonder if this obsession with a lack of specialist beds is rather yet more refusing to address the issue and part of the current attempt to pass the buck.

It may be in a sense. And of course suitable side rooms are available in all hospitals. What is lacking is a team of people with the expertise to make use of those rooms wisely for people with ME/CFS.

I am interested in the suggestion that the referral to St Mark's is more about providing some BPS challenge therapy - a course of gastro-rehab. If so the parents and Karen need to be aware that it is not evidence based and not indicated.

 

[JemPD]

And if PEM can be produced by bright light or travelling in an ambulance

Dont lets base that on what I've said - perhaps I am alone in that.

From the travel (ambulance or otherwise) point of view, it actually takes a lot of physical energy/strength, to hold oneself in position in either a reclined in a car seat, or laid on a trolley. At every bend and shake your muscles contract to attempt to hold yourself in place, its kind of automatic & only really noticeable when you're very weak, so its quite the workout physically, it's not just the vibration/poor suspension, its the way you get thrown about going around every corner. Its why I'd rather travel a longer route if i can go on a motorway/dual carriageway, than a country road with lots of bends.

Perhaps it could be improved if the patient were strapped in so firmly as to be able to fully relax.

 

[JemPD]

But. We have no understanding in biological or scientific terms what this exertion thing is. It isn't any of the things the physiologists like Workwell study - at all. Science has no concept of exertion in that sense. As far as we know it has nothing to do with using up calories or energy.

Ah, yes I see what you mean. I think thats something I havent understood. At all. In my 'lay' mind, and from the point of view of my experience of ME, where it all - all activity = exertion. So cognitive, physical, sensory - it's all 'exertion' and all provokes PEM either individually or in combination/cumulatively.

If that makes no sense scientifically, then I begin to see why they think we have FND.

Unfortunately I have to leave the discussion now to deal with my own stuff. But I hope others will give their perspectives/experiences of travel because I am just one person & it could easily be that I think I'm having a common experience, when I'm actually unusual in that.

 

[Peter T]

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.

Perhaps a red herring but this seems to me analogous to some of the arguments around assisted dying in Canada that we have looked at here. In Canada lack of quality of life, because the current services fail to support people with ME medically, practically and financially, is regarded as a valid reason for assisted dying.

I understand the dilemma over balancing the costs of travel versus the benefits of appropriate medical intervention. Some years ago, when my ME was significantly worse than at present, I had some sort of acute neurological event (sudden onset hemiplegia and hemianopia). For some strange reason I thought it would be better to get a neighbour to come round rather than attempt to call an ambulance myself, however the first three people I tried to call were out by which time I was so exhausted I fell asleep. Consequently it was more than twenty four hours later before my GP came to see me, when my symptoms had spontaneously resolved. Then all I was offered was a hospital outpatient appointment, when I felt the energy* cost of traveling thirty miles, dealing with waiting rooms and with a wait to be scanned were too great. I was lucky that loss of life or additional disability did not ensue. It was only several years later that I felt well enough to travel to have that brain scan at a mobile clinic a little nearer (15 rather than 30 miles).

[added * I use the term energy in it widest lay sense rather than intending to refer to an biological process]

 

[JemPD]

As far as we know it has nothing to do with using up calories or energy.

Gosh.
So looking at 'energy' use in any usual sense might be completely a red herring?!

Wow.

 

[Jonathan Edwards]

From the travel (ambulance or otherwise) point of view, it actually takes a lot of physical energy/strength,

It does but I don't think that is actually why it is tiring. We assume that we are tired by energy expenditure but actually we probably aren't. We are tired by something much more complicated we do not understand. When I was doing athletics and using up energy either fiercely in 100 yard sprints or persistently in 5 mile runs I don't think my tiredness later bore any direct relation to the actual entry use.

So this is not something special to people with ME/CFS. Fatigue is not just a matter of energy use. We keep being told about experiments in physiology labs that claim in ME/CFS but none of it ever really added up.

Dont lets base that on what I've said - perhaps I am alone in that.

So I am not basing on what you have said. I am basing it not only on what 3000 member have said in various ways but also on what normal people say about normal fatigue.

 

[bobbler]

It would make sense of the situation if there was. I agree that there ought to be other places where TPN could be set up , of PEG. If St Mark's has been offered as a 'neurogastroenterology centre' specialising in 'gut-brain interaction', which would not be surprising then everyone concerned she perhaps think again. Maybe the carers have not been filled in on what the real situation is.

It is frustrating looking on at these situations without adequate information when I suspect that S4ME may be the only place where anybody is seeing the problem in a full perspective.

I don't know what I can write on here but worth looking through past stuff regarding the history, of questions that were asked and answers given or not.

 

[JemPD]

It does but I don't think that is actually why it is tiring. We assume that we are tired by energy expenditure but actually we probably aren't. We are tired by something much more complicated we do not understand. When I was doing athletics and using up energy either fiercely in 100 yard sprints or persistently in 5 mile runs I don't think my tiredness later bore any direct relation to the actual entry use.

So this is not something special to people with ME/CFS. Fatigue is not just a matter of energy use. We keep being told about experiments in physiology labs that claim in ME/CFS but none of it ever really added up.



So I am not basing on what you have said. I am basing it not only on what 3000 member have said in various ways but also on what normal people say about normal fatigue.

Yes, interesting.
A friend was the other day saying how exhausting she finds travelling on the train. I guess it seems different to me, because while being a passenger as a healthy person used to be a little soporific sometimes (during the actual journey i might doze off if it was also boring), I didnt find it tiring, I didnt feel tired after a long journey unless it was physically tiring with a lot of walking, humping bags, dashing so as not to miss connections etc.

So for me it's always felt like a thing that only developed after I got ill, indeed after i went from mild to severe, where suddenly the experience was that travelling was like triggering the 'flu'.

But clearly many people do find it provokes fatigue. What a puzzle

 

[Sasha]

I am pretty sure there is no evidence at all. I see nothing that indicates that anaerobic threshold is relevant. When someone wakes the next day, and the days after for weeks, feeling much worse there is no plausible reason why that should have anything to do with aerobic threshold being crossed some days before. And if PEM can be produced by bright light or travelling in an ambulance the whole aerobic threshold idea makes no sense. I am afraid that it is probably pseudoscience as much as the BPS theories. This is why I see the patient so much as wedged between two piles of nonsense.

I fully understand what you mean by that [exertion making ME/PEM worse] and I think it makes sense and must have a biological basis. If I travel a long distance I find it makes me feel as if it is an hour later at the end of the day, even if it was sitting comfortably in a train.

But. We have no understanding in biological or scientific terms what this exertion thing is. It isn't any of the things the physiologists like Workwell study - at all. Science has no concept of exertion in that sense. As far as we know it has nothing to do with using up calories or energy.

I now fully intend to have 'Wedged between two piles of nonsense' chiselled onto my headstone but meanwhile, I hadn't realised that this was your view on PEM and exertion and it's very interesting. I wonder if it's worth starting a separate thread for the many brains of S4ME to focus on it, if it hasn't been focused on already (I haven't been able to fully follow the recent threads on lying flat etc. so maybe it's already been done and I haven't noticed).

 

[Trish]

Why does the fact that for some pwME sensory sensitivities set off worsening of symptoms mean that exertion triggered PEM and studies such as 2 day CPET are nonsense? There may be more than one biological mechanism leading to worsening from different stimuli. I don't want to divert this thread further with this idea, so will go to another thread to continue my idea.

 

[Trish]

Why does the fact that for some pwME sensory sensitivities set off worsening of symptoms mean that exertion triggered PEM and studies such as 2 day CPET are nonsense? There may be more than one biological mechanism leading to worsening from different stimuli. I don't want to divert this thread further with this idea, so will go to another thread to continue my idea.

I have started a new thread here
Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

Edit: New thread title amended.

 

[Ash]

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.

I read it that you were patiently explaining to JE why an ambulance ride for one hundred miles would be a serious concern for someone in Karen’s situation. How maybe JE was underestimating the impact in terms of pain and deterioration when he said he wondered how reasonable patients and their families were being. Saying that the pain can be so bad and prolonged afterwards that you yourself might choose not to endure it even if it was your only chance, isn’t saying that another person ought to die.

A person severely affected by ME may be at the top of their limit of pain and not feel like they could withstand more.
If this were the case they might quite rationally and reasonably fight for doctors to make other options available to them, or rather their family or support network might.

This situation isn’t comparable to a person with cancer because while cancer could be far far more painful making an ambulance ride agony and worse than for people even very sick with ME, and their condition certainly is far more deadly than ME, a cancer patient can reasonably hope for effective treatments to prolong their lives or to lessen their pain when they reach their destination. At least doctors will have some knowledge of their condition and be familiar with complications and considerations for this patient.

Whereas an ME patient knows that while feeding will prolonged their life, if they get much worse from a journey there is nothing that can or will be done for them. They might fear whether they can stand to be alive in a worsened state.

If the very severely affected ME patient has had ME for a long time they may not trust that good treatment is there for them at the end of an ordeal like this. It would be rational and reasonable not to trust.

I don’t think people with bone cancer should be put through the pain of a low suspension ambulance ride. I don’t think anyone should. I think hospital transportation needs an urgent upgrade.

I agree with JE that even if fears confirmed and travel increased severity of illness life above all else. There is a chance of improvement.

I believe patients in general would have better outcomes in separate rooms. But for a person very severely affected with ME the separate room is the medical intervention, there is no other specifically for the condition.

 

[Ash]

Dont lets base that on what I've said - perhaps I am alone in that.

From the travel (ambulance or otherwise) point of view, it actually takes a lot of physical energy/strength, to hold oneself in position in either a reclined in a car seat, or laid on a trolley. At every bend and shake your muscles contract to attempt to hold yourself in place, its kind of automatic & only really noticeable when you're very weak, so its quite the workout physically, it's not just the vibration/poor suspension, its the way you get thrown about going around every corner. Its why I'd rather travel a longer route if i can go on a motorway/dual carriageway, than a country road with lots of bends.

Perhaps it could be improved if the patient were strapped in so firmly as to be able to fully relax.

You’re not alone.

 

[MEMarge]

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.

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

We know that Whitney needs Ativan to survive trips to hospital, for changing his PEGJ and it's unlikely to be as far away.
Others, some even with moderate ME find travelling any distance in a car beyond their capabilities.