Hospitalized Patient w/ Severe ME Looking For Treatment Guidelines

[aaron_c]

A good friend of mine has been hospitalized and could really use some help communicating to the staff 1. That it is not ok for janitors to enter her room to clean the floors or empty waste bins during her normal sleeping hours of 2 am - 10 am and 2. That she needs assistance eating and getting to the toilet. Does anyone know of official treatment guidelines for severe ME that she could show them?

Here is her post:

Hey guys. I’m in hospital until they can allocate me care (package, my aged care, NDIS) to discharge me home. It’s unknown how long this will take. This is day 5.

I need help locating the best documents about severe ME care and guidelines. I need advocacy help.

I’ve slept about 15.5 hours since tuesday (4/2/3/3/3.5) because they come in and wake me up every morning at 6.20am. Yesterday I spoke to them and said it needed to stop so I could recover from this crash and not deteriorate, They arranged to change the blood pressure times so I wouldn’t be woken up between 2-10am and put a sign on the door, then today the cleaner came in and mopped the floor at 6am anyway. They’re saying that he has to clean as part of his round. I just need it to be outside 2-10am, the time range that I usually am able to sleep.

I have pretty bad waking tachycardia (130bpm) when I am woken up so it’s very hard to get back to sleep. If I stay asleep, My heart rate is lowest between 6-10am. They don’t seem to understand sympathetic dominance, overstimulation, the risk of sleep reversal or the risk of deterioration, that everytime I have a conversation my feet go cold, and that this is over exertion, and they don’t seem to respect the audible alarm of my heart rate monitor which is going off constantly whenever someone is in the room. They don’t understand I can’t use my arms to feed myself right now. I came in in a crash and haven’t been able to get out of it, it’s worse crash in over a year with these symptoms going on for three days now when it’s usually one, because I can’t rest to recover. They want me to trial vivonex elemental, I REALLY needed to sleep to get steady before starting it so my body was less reactive.

I have good diagnosis reports that I have ME, but my specialist pete Smith (immunologist, researcher with griffith university, in Queensland) his office is closed until jan 8 and all the main doctors aren’t here until Wednesday. I haven’t met the NUM of the ward and she’s not here until Wednesday. I have the iom report book and the medical primer here but can’t really move around. Is there a severe section in the iom report? I think I might have a document in the folder from the NICE guidelines but I can’t use my arms to look. Does anyone know what uptodate and the other system (the hospitals use cpep? Or something? Which has uptodate as part of it) say about severe ME care? Perhaps it’s based on the IOM?

Usually I have one day of heart rate volitilty (Eg hr 110 rolling over) which resolves once I sleep and the crash progresses and it stabilises. It makes it hard to eat, use the toilet, and talk. Because I keep being woken up, the lability is ongoing and I have been unable to toilet. At home when I’m like this my carer carried me to the toilet for the one day it’s like this, I can’t open my bowels laying down and can’t shift onto a commode myself until this phase of the crash resolves and the labile heart rate calms down. Usually by the third day I am able to sleep 8 hours, as long as I’m not woken once I finally get to sleep. The OT isn’t here, they won’t manually transfer me and won’t help with a hoist. They haven’t let me see a physio and won’t let my physio come in. They want me to trial vivonex oral elemental, and don’t seem to understand I need to stabilise so I’m less reactive. They don’t seem to take the risk of deterioration from food trials seriously. Also my BP was 135/xx when I came in, it’s keeps slowly falling Eg 109/x then spiking back up, they think that my BP is ‘great’, they don’t understand I’m severely stressed, normal for me is like, 90/64 and usually it falls back down once I sleep and stabilise. The sound of the aircon is getting harder and harder to handle, usually the light, sound, chemical sensitivity, as well as ongoing muscle spasms and tachy, all calms down once I am able to sleep.

My family don’t understand ME and I don’t have an in person advocate here.

 

[TigerLilea]

It's a known fact that no one gets a decent night's sleep while in the hospital no matter what is wrong with you. Hospitals are noisy places. There is always something going on - 24 hours per day. It's not a hotel.

 

[aaron_c]

And for anyone who is interested, here is her facebook post explaining how she uses resting HR to track her crashes.

 

[aaron_c]

It's a known fact that no one gets a decent night's sleep while in the hospital no matter what is wrong with you. Hospitals are noisy places. There is always something going on - 24 hours per day. It's not a hotel.

Right, but most people can get back to sleep or at least get fitful sleep if they are woken up in the middle of their sleep cycle--that's not the case for some of us like my friend. And the consequences of getting bad sleep--particularly repeated bad sleep--are much more severe for us than they are for most other people. For her it means going from being able to feed herself to needing help with that, and with the toilet. What might be uncomfortable for one person is completely hellish and frankly dangerous for someone like my friend, and a hospital should be willing to make reasonable accommodations.

 

[Esther12]

Right, but most people can get back to sleep or at least get fitful sleep if they are woken up in the middle of their sleep cycle--that's not the case for some of us like my friend. And the consequences of getting bad sleep--particularly repeated bad sleep--are much more severe for us than they are for most other people.

I'd have hope they'd have been willing to make that adjustment without needing specific guidelines on it.

I'm not aware of any specific documents that would be of use here I'm afraid, but this isn't an area I know much about.

Hopefully your friend will be able to get out of hospital soon.

 

[Valentijn]

As @TigerLilea says, hospitals are simply noisy places to be. It's a bit of a flaw in the general concept of hospitals, but there's pretty much no way it's going to change any time soon. Best advice for an ME patient is to get out as soon as possible.

But the hospital should be able to accommodate her need for assistance with eating and getting to the toilet. I don't see how a booklet would help with that though. It isn't something all ME patients need, nor all patients with any other disease. They should be offering that assistance based on her need for it, not based on a diagnosis. If that isn't happening, she needs to complain to a supervisor. The nurse which is refusing assistance should be able to help her contact someone she can complain to about it.

It also might help if she can get a copy of her file from the hospital. They might have effectively rediagnosed her with anorexia, depression, psychosomatism, etc, which is difficult to fight or fix if you don't know it's happening.

 

[Adam pwme]

I just saw this in a FB group, hope it may be of some use.

http://www.hfme.org/Word/Hospital_notes_for_ME_patients_Extra.doc

 

[TigerLilea]

and a hospital should be willing to make reasonable accommodations.

Unfortunately, nurses tend to be over worked and don't always have time to make 'reasonable accommodations', especially if they have several patients needing the same. I know from having three family members hospitalized in the past seven years that patients don't always get the help they need, when and as they need it. I hear the same thing from Americans who have to go in and help family members because the nurses simply don't have the time. I feel for your friend, but I don't think that having ME will get them special considerations as much as they require it.

 

[aaron_c]

Unfortunately, nurses tend to be over worked and don't always have time to make 'reasonable accommodations', especially if they have several patients needing the same.

I know, and going to the hospital was pretty much her last choice because of this and of course the noise concerns (she has noise-canceling headphones and silicone earplugs. but she is so sick that they don't help enough). At the same time the squeaky wheel gets the grease, and I want to do all I can to support her in fighting for what should be a basic right for people in her condition. I also think that if a hospital cannot provide even basic services like toileting assistance then at some point their their conduct becomes outright negligent, and although this may not be the fault of the overworked and often well-meaning nurses, that does not mean that no one is at fault or that she should lay down and take it.

 

[Samuel]

Right, but most people can get back to sleep or at least get fitful sleep if they are woken up in the middle of their sleep cycle--that's not the case for some of us like my friend. And the consequences of getting bad sleep--particularly repeated bad sleep--are much more severe for us than they are for most other people. For her it means going from being able to feed herself to needing help with that, and with the toilet. What might be uncomfortable for one person is completely hellish and frankly dangerous for someone like my friend, and a hospital should be willing to make reasonable accommodations.

i cannot read all this thread, including the initial post, as my brain is being fried on the hot venusion surface someplace, but i read this, and it is right.

please believe me people: not every pwme can tolerate this stuff.

hospitals exist to make people better. i think the fact that we have too many needs might be making us deprecate the needs we think are lower on the list or make us high maintenance. i know i spend my days trying to be low maintenance.

my opinion: our diseases do not deserve less than diseases currently perceived to be normal.

disease-appropriate care at hospitals like dim lights, a place to lie down in the er, and quiet are not entitled, whiny, hotel-level comfort foods. they are fundamental things. care for many diseases throughout history has included drawn shades, quiet, low stress, fresh air, sleeping bags on cold porches, even a !@#$ clown. whether correctly or incorrectly for the disease, they were supplied.

this stuff is no less a part of treatment than diet restrictions for diabetics. we don't say that diabetics are being whiny. actually that's wrong -- people did. it was a misopathized disease just like ours. but now it is a safe bet that hospitals provide diets for diabetics and don't whine about diabetics being picky eaters expecting hotel food.

we collectively HAVE to stop being submissive. not a reflection on the people in this thread, but the whips and chains belong in our hands. save the rest for private moments.

ETA: i am not recommending any action or time. i am saying that this stuff is absolutely legitimate.

 

[Allele]

Hear hear, Samuel. Very well said and a much-needed shift in perception.
It's not our fault we have been conditioned to see things this way, but it is our responsibility to change it.

 

[Binkie4]

I was in hospital electively the week before last. I was very worried that I was not well enough to be in hospital, which actually sounds odd, and I posted that here. A certain level of fitness is required to " manage" the hospital experience. I rested very hard before I went in which would not have been possible had I gone in as an emergency.

If anyone with ME has a hospital admission planned, please do your own preparation beforehand. I'll add a link to the post I wrote. A personal advocate ( friend, family member) would help. I agree with @Allele and @Samuel but in the absence of the changes needed, be prepared to act on your own behalf.

@aaron_c 's friend sounds unable to advocate for herself which must be very frightening.

https://www.s4me.info/index.php?threads/being-hospitalised.1603/

Edit: paragraphing

 

[Indigophoton]

But the hospital should be able to accommodate her need for assistance with eating

Yes, you would think so, food is fairly basic, but having spent over a month in hospital myself this year after an emergency admission, I can confirm that having ME may work against the patient.

I was assessed by an OT who didn't think much of ME, and thought I was pretending to be ill. As a result, they went to the trouble of providing pureed food, because I was too weak to chew, but declined to feed it to me because the OT thought I would spring into action when I got hungry enough.

I went into hospital severely underweight and lost even more weight while I was there.

The same OT wanted to discharge me with no care package, which would literally have resulted in my death as I have no other back-up, and at points was completely paralyzed, and in any event could not mobilise.

The ambulance transfer was booked and I was a couple of hours from being dispatched home alone when a very decent Physio intervened (and he subsequently changed the system for all other patients, to prevent the OT(s) having the final say).

The care I received varied from basically abusive to excellent, depending on individual attitudes to ME.

Although at times I was unable to speak, at other times I articulated and advocated for myself as well as I could (which was not very well at all). It made no difference with the staff members who thought ME was imaginary or psychological.

It is a very challenging position to be in, to be physically and cognitively incapable, very frail, very, very unwell, and in a situation that is, ironically, making you much worse, and to be unable to make the poor treatment stop.

I came out of hospital much more severe than when I went in, with what looks like a long-term significant deterioration in function.

So although this doesn't help your friend a lot, @aaron_c, I do empathise. It's a tough spot to be in. I hope you can help her to get things as supportive as they possibly can be, and that she is able to hang in with the rest of it without severe consequences to her health until she gets home.

It will make a huge difference to her having your moral and practical support, and to know that someone is fighting on her behalf; that's worth a lot. Good for you.

 

[Paradoxfloss]

Hey guys.

Thanks to Aaron for posting and thanks for your responses.

I came out of hospital much more severe than when I went in, with what looks like a long-term significant deterioration in function.

Today I had a heated conversation with the nurse where I explained to her that not sleeping means deterioration to my condition for which there is no treatment, and that the end point is being tube fed, unable to talk and stuck in bed for the rest of my life. And that’s not ok even if it’s expensive for the hospital to change the cleaners. I told them my friend who has ME who was in hospital for 3 months, they cleaned her room only once a week and had a no perfume policy (whereas I’m dealing with the perfume exposure and just asking to change the cleaner time). It was very difficult, HR 140bpm, my hands started shaking and went numb, and I cried for a few hours afterward. The higher managers said no but she came up with a solution, there are other cleaners at the hospital and they’ve now scheduled them to come between 11am-8pm. Which is fine. I just wish I didn’t have to fight so hard for it.

This hospital is actually okay, almost everyone has been kind to me. The medical system they use is cpep or something, which references uptodate, which references the 2015 IOM report and says SEID. So I haven’t had to fight the diagnosis. That report is a real game changer post 2016-2017. I’ve been left without care in compromising situations more times than I’d like this year, but Ive just gone without food and water until help came in a few days.... and thankfully didn’t need to call an ambulance until I had a great report from an immunologist who specialises in ME, as well as an OT report which describes PEM and the way it affects me and my functional limitations. I came in in the ambulance clutching it. So I’m in a room by myself and the nurses don’t turn the lights on. The problem is more just the limitations of the procedures they have in place, as mentioned above, and the constant sound (and feel) of the air conditioning, even though headplugs and headphones, omfg. I sleep with ear plugs and a pillow over my head. Anyway When I finally spoke to the doctor today, his was response was just that it’s not good for me here and we need to get me home with care. He is kind too and has listened to everything I’ve said.

Regarding toileting if I can clarify. When I’m in PEM all my muscles spasm and I get bad POTS even sitting. My heart rate elevates massively from tiny movements. At home my carer would carry me to the toilet as quick as possible, support me to stay still to open my bowels, and carry me back to bed. Here having to transfer myself to a commode and be wheeled, and then wait for heart rate to calm down enough to go, and then transfer back, was enough to cause PEM worse again and put my back muscles into spasms for 12 hours. Each time I do that my ability to do it the following day worsens. The nurses aren’t allowed to assist. I tried but couldn’t use the bedpan with the limitations of their equipment, only exhausted myself, and the hoist is upright and again the nurses aren’t allowed to assist with legs. So I’ve laid here holding for a few days with no way to go. They want me to trial stuff that I may react to with diarrhoea and vasovagal syncope, but to me that’s insane without the ability to toilet safely and accessibly, and without the ability to sleep to recover.

Today I finally slept five hours and with the help of a bed wedge a friend brought from home, was able to use the toilet. So that’s a merry Christmas!

Re advocating for myself I’m doing okay, I just got so sleep deprived and frightened that I went into meltdown a bit.

 

[Allele]

Welcome, @Paradoxfloss and thank you for telling us your hospital experience.
I'm so sorry you're having such a hard time, and on Christmas, but very glad to learn you have had such positive responsive from your health care team regarding ME. The game really has changed, wow!

It is very confusing to learn that the nurses are not allowed to help with legs and such (?). What kind of weird new rule is this? What do paralysed people do, or elderly, etc? It's very odd to hear the rule even exists, much less is being enforced in your case. I'm so sorry. But good on you for advocating and causing the shifts in policy, brava!

It's wonderful your doctor is prioritising getting you home with care. May it be so, and may 2018 bring you many easeful, restful days and much improvement

 

[Inara]

I have only an advise for next time: an advance patient's directive. I have it, and I explain in detail what can be done and what mustn't be done. (I also forbid psychological diagnosis and treatments.) I also warn about sueing those who don't comply. But I don't know how it is in other countries with directives.

 

[Cinders66]

The only primers sadly with info on severe ME is the iacfsme primer and NICE, if you want to risk using that flawed document. Iacfsme 2014 section is good, much better and download for free if google it but still very short andvnot really designed for hospital care issyes. As someone said hummingbird does but it lacks medical authority. I was disappointed that ICC and IOM pretty ignored the issue.


AFAIC it's not ok to say to someone with severe ME at risk of deteriorating due to inexpert care and environment that that's just how hospitals are and to suck it up or just get out asap. And what about those severe who have to stay in for whatever reason. The severely affected need more guides and help, they also deserve hospital to go out of way to accommodate as they would ither illness but unfortunately it's unlikely to happen because they're marginalised, even within the ME community n


Well done for being so knowledge and self advocating and it's good you can still manage that . In uk you'd be lucky to even get your own room which brings all kinds of problems and risks to health. I hope things improve gradually for you.

 

[TiredSam]

I have only an advise for next time: an advance patient's directive. I have it, and I explain in detail what can be done and what mustn't be done. (I also forbid psychological diagnosis and treatments.) I also warn about sueing those who don't comply. But I don't know how it is in other countries with directives.

I'd be very interested in hearing more about that. Does the hospital have to comply with it?

 

[Inara]

@TiredSam
In German it's called "Patientenverfügung", and theoretically, acc. to BGB, the hospital and staff has to comply. (But you know how it is with the law... )

I wrote that psychological diagnosis and treatment are felt to violate my basic human rights and that I don't believe in the existence of "psychological illnesses" (but you have to remain silent - completely, don't say your name or age... - the aim here is to avoid incapacitation). I look upon ignorance of ME as mayhem, and I won't accept it.

In fact, I would go to court, and I would report the doctors that mistreated me, and I would try to have their approbation removed. It's no joke to make people sicker and to maltreat them. For me, it's self-defence.

I used several 'templates' and individualized them. (I would be willing to share via private communications. But it's German.)

In the end, I had my lawyer "polish" it, so I hope it will help. I can test it next year when I'll be in hospital. I hope to also have a "contract" where the doctor signs to accept my Patientenverfügung. If he doesn't I will leave. But I have to test that in reality, too.

I also have a preventive health care proxy in case anything happens. It's registered. (But German government takes questionable steps which make forced treatment and incapacitation easier, so let's wait for the future.)

I have no idea how it is in other countries.

 

[Samuel]

The only primers sadly with info on severe ME is the iacfsme primer and NICE, if you want to risk using that flawed document. Iacfsme 2014 section is good, much better and download for free if google it but still very short andvnot really designed for hospital care issyes. As someone said hummingbird does but it lacks medical authority. I was disappointed that ICC and IOM pretty ignored the issue.


AFAIC it's not ok to say to someone with severe ME at risk of deteriorating due to inexpert care and environment that that's just how hospitals are and to suck it up or just get out asap. And what about those severe who have to stay in for whatever reason. The severely affected need more guides and help, they also deserve hospital to go out of way to accommodate as they would ither illness but unfortunately it's unlikely to happen because they're marginalised, even within the ME community n

the iacfs/me primer, at least the original, is dangerous. it recommends exercise for severe sufferers. it also says infections are not a problem.

there is an meicc primer. it does not do that.

you are right that it is not ok and you are right that severe is marginalized even within the me community.

and you are right that we need guides. i want to see a central place where we can have:

- a list of things to take to hospital
- dos and don'ts while at hospital
- getting taken seriously for m.e.
- getting taken seriously for things like hyperalgesia and opioid intolerance and ineffectiveness
- what to do if there is a problem getting taken seriously
- a TEMPLATE for advance directive or similar legal documents in each jurisdiction/culture so that we can MAKE THEM NOW