Hospitalized Patient w/ Severe ME Looking For Treatment Guidelines

Hope that you will be home soon @Paradoxfloss and that your home care will improve a lot too when you get home.

I have a booklet that has information for patients and hospital staff regarding treatment of patients with ME. I keep it on hand just in case I ever need it. It's fairly comprehensive and includes a small section on ME and hospital environments. It’s available to download, or you can order a hard copy by request here:

https://www.thegracecharityforme.org/

 

How is it going @Paradoxfloss. Have you been able to contact the advocacy agency Greg mentioned? I have been thinking of you and hoping that the hospital have been making your stay more comfortable.

Please feel free to PM me either here or on facebook.
Allie

 

I tried to get my GP to put an advanced directive document on file about 3 years ago, my request was refused on the basis they only do it for people with terminal illnesses.

 

@Wonko, I'm not sure your GP has a choice. The only requirements to be able to make an advance directive are to be over 18 and competent:

https://patient.info/doctor/advance-care-planning

 

The 2014 IACFSME severe section is much better, I agree with you on the original. What severe ME patients need most of all is something from a dr, whether someone like dr kolgenic in USA who has severe ME experience or Speight in UK, validating the severe ME reality and limitations. What we face most is disbelief, not just in ME but that ME can get so bad and cause the sensitivies from Hell - Unusual feature - and that silly things like being washed or sat up or sent for too many consecutive tests can set off deterioration - another unusual feature. I agree with the rest you say but anything written by a patient isn't recognised. The severe ME guide book by the late Emily collingridge might include some of it.
Unfortunately as even ME specialists aren't seeing severe ME patients the need is really under the radar, even just assumes family care and protection.

 

I doubt this would help much, if it all. If a nurse or doctor is skeptical enough that they won't listen to the patient, they need a more authoritative document. This one was obviously put together by one or more patients, and lacks support for many statements. The "ME versus CFS" spiel is annoying enough for me to read as a patient, and I'd imagine most practitioners would throw it in the trash at that point, without actually getting to the practical advice.

 

You don't need your GP for that. I don't want to justify my advance directive. It's thought through, that will suffice.

I have three doctors' certificates that validate my legal competence at the time of writing the advance directive.

 

Thank you - as I said I last raised it with her about 3 years ago, if the system has changed since then, I will raise the matter with her again when I have the capability

 

I think you may be talking about a different system, but assuming you're not......I am clearly not legally competent as I have no idea how to get 3 doctors to certify that I am, under the NHS, thus clearly indicating a lack of competence.

 

That is so true and it happened to me many years after I was diagnosed with cfs, when I was at my most vulnerable!

 

You know, if you are trying to be blunt, you’re doing a poor job....

 

What does it mean, "under the NHS"?

I don't know how it is with you, exactly, @Wonko.

I have a disability status. That doesn't mean I haven't got legal competence. Officially, the UN convention for human rights still holds in Europe, and in European countries - officially - disabled or sick persons mustn't be victims of discrimination. And to revoke one's legal competence due to illness or disability is discrimination. (In my opinion, it always violates human rights; and in fact, that's the UN's opinion, too.)

Of course, courts might decide differently and different countries choose different paths, no matter any contracts. Reality is always another page of the book...

Regularly, legal competence is only removed due to psychological issues and if a psychiatrist says you're incompetent due to it. Is there incapacitation in UK/US/elsewhere?

That's regularly done - I got a copy of files from several doctors, and it was quite annoying. Some doctors have lots of phantasy...That's why I wanted a short version of my advance directive or a contract.

 

Hey everyone.

Thanks again for your responses.

Tonight is my tenth night here.

The nurses are leaving me alone for the most part and some have stopped wearing perfume—I had a bad weekend last week with hours of pain, anxiety and crying and had to again very strongly advocate for myself, HR 140bpm again. They were surprised to realise that in other places there are policies against perfume and scent use.

Some still aren’t reading the file before they come in though, waking me, talking to me while taking my Bp, asking if I want the curtains open, etc.

Thankfully it’s a long weekend again, sad for me to be stuck in here for New Years, but good I’ll have a break from the doctors and scheduling. The dietician is giving me a hard time, ‘liberalise’ my diet, fair enough but she doesn’t want to wait until this crash is done back to baseline, to listen to my symptoms or to leave gaps in between introducing things. Doesn’t make me feel overly confident, feels like she’s just meeting a quota rather than actually helping me.

I have trouble posting on here as the formatting isn’t great for my phone. Those who’ve said that it’s progress, yes it is. The single room and the blind down, with the nurses using torches, cleaning with water only during manageable hours, it’s all great. The only thing still driving me crazy is the sound and feel of the air conditioning. Even through silicone putty ear plugs and industrial ear muffs.

I am still stabilising despite everything though, mainly cos of how strict and stubbornly I’m pacing, sleeping when I can. HR is improving every day, including during sleep. Just psychologically starting to feel a bit trapped and lonely. Miss my cat.

We’ll know more on tues/weds when the relevant department reopens. My birthday is the 10th so I’m praying for a small miracle.

 

I'm so sorry you're having to fight so hard just to stay ok in the hospital @Paradoxfloss
Still, what you have accomplished is a staggering and awe-inspiring feat.
Give yourself credit for having not just made your own stay much better, but having educated an entire team of people.
You are a true ambassador and that is no small thing; you never know how many shall benefit from this in the future.

And not just for ME. You are doing your part to skillfully model what an empowered patient looks like, and in doing so normalising a dynamic where health care teams don't feel threatened by such an unthinkable phenomenon--but rather can take joy in teaming with those in their care. Thank you!

 

@Cinders66

I agree with most of this, but actually it is possible to refuse to give consent to too many consecutive tests, and I think an ME patient going into hospital should give careful thought to this prior to admission.

A letter from your ME specialist, assuming you have one, explaining that rest will be needed after procedures will help. I refused a stress test the day after anaesthesia and it was difficult for a few hours, but in the end it was accepted. The letter helped greatly. I still have to go back for the stress test ( I understand why it's needed) but I will rest hard first. It may not be enough but I have had the conversations, and letters have been sent so fingers crossed. If it starts to feel unsafe I will have to withdraw consent. It's taking personal responsibility for anticipating ME reactions which shouldn't be necessary but is.

That is not easy - in fact it can feel alarming- but it may be necessary until procedures to safeguard us are in place. And yes, @Paradoxfloss, you are helping normalise what ME patients need.Great work. Am sorry your heart rate has reacted but these physical signs show how wrong the care is. My BP jumping up while I was arguing my case was noted and had an influence.

So good luck for the rest of your stay. I too hope you have a small miracle before your birthday.

 

Hey guys. Day 22. Still here.

Did a sodium chromoglycate trial last weekend, hoping it would stabilise my food reactions. Instead it put me in bad stomach pain and wiped me out for a week. Sleep HR data looked like awake data. Thursday a friend came to carry me to carry me to wheelchair/car/house/couch and back so I could check my cat. I went despite being crashed, Was good to feel the wind on my skin but I shouldn’t have gone.

My hair started falling out pretty significantly midweek, that scared me a bit. Crash on top of crash from going home, the a horrid interaction Friday with a social worker blaming and attacking me for this whole situation, telling me I’ll have to break the lease on my house and go into a home—by Saturday I was a suicidal crying mess. Then yesterday my throat got crazy sore and red, and burning up from the inside today.

Today was a full on day, yet another dietician apt ‘did you try the pears, you’re malnourished’, plus trying to organise pushing my care applications through, through a haze of brain fog. The application lodged Friday to escalate is still pending; yes I will be here for my 30th birthday.

This was the feels

 

@Paradoxfloss You're having such a horrible time, I feel for you. I hope you see some improvement soon and that your care application succeeds in giving you the help you need. Some people in the caring professions can be so unkind

 

Update. Application for access to the National Disability Scheme was finally approved and I was discharged at the end of January. The ambulance ride was horrific. It was 40 days in total. My sleep seems to be permenently broken, I can’t sleep more than 2-5hrs at a time. Spent the last 2 weeks in a stupor sleeping in shifts around the clock.

I’m on minimal temporary emergency respite home care until the end of the month, hopefully by then we will have a full plan of proper supports in place, which will give me choice and control for hiring and scheduling (as it’s still a bit of a nightmare) and hopefully long term stability.

 

i wonder if this could be useful for those who live in the usa. you just fill it out and click submit.

https://www.ada.gov/complaint/form.php?language=en

"Americans with Disabilities Act Discrimination Complaint Form"

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imagine thousands of pwme filing complaints against hospitals who discriminated against them.

imagine if, say, @meaction checked out the details and told everybody about it in their newsletter.

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even small ada complaints make businesses pay attention, and ours will definitely not be small.

where it works, future pwme will be protected.

even where it does not work, it [1] alerts the us department of justice to a major problem via an approved channel and [2] demonstrates the system is broken.