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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Treatment of ME patients in ERs and Hospitals

JenB

Senior Member
Messages
269
Hi all! I'm working to improve the quality of information for patients with ME, fibro, EDS, POTS, mast cell activation disorder having surgery as well as crowdsourcing a set of best practices for hospitals.

The former will eventually be packaged into handouts patients can give their surgeon and anesthesiologist. (There are many great existing resources but nothing comprehensive.)

The latter will eventually be improved in consultation with physicians, and will serve as a resource for patients around the country/world seeking to engage with their local hospitals re: how to improve care for ME patients.

Please jump in (simply create an account and hit "edit"). Too timid to edit the page directly? You can also make suggestions or link to resources in the "discussion" tab.

I'd like to pull from all of the existing medical resources addressing this topic but also from your personal experiences in hospitals and emergency rooms. What policies or training, had they been in place, would have improved the quality of your care?

http://me-pedia.org/wiki/Guide_for_patients_having_surgery
http://me-pedia.org/wiki/Best_practices_for_hospitals
 

Gingergrrl

Senior Member
Messages
16,171
Hi all! I'm working to improve the quality of information for patients with ME, fibro, EDS, POTS, mast cell activation disorder having surgery as well as crowdsourcing a set of best practices for hospitals.

I think this is an absolutely amazing idea, and is sorely lacking, and I support it 100%. There is an official packet from the Mastocytosis Society that patients can fill out and bring with them if they go to the ER (which I have done) but sadly many doctors completely ignore it.

I think a general packet would be very useful but it should also include a section so each patient can personalize it (since we are all so different). My MCAS doctor, for example, said that even if I achieved 100% life-long remission, I should never, ever have an iodine based contrast dye for any procedure b/c of the anaphylaxis risk.

The former will eventually be packaged into handouts patients can give their surgeon and anesthesiologist.

Absolutely and I was literally just having a discussion via e-mail with my doctor re: this topic today. In my case (which will not apply to everyone), I need to have a colonoscopy at some point b/c I am high risk b/c my mom died of colon cancer. However, there are several major risk factors for me with this procedure from potentially being allergic to the Prep drink, and risks associated with POTS/ Dysautonomia, all the way to the most serious risk for me which is NOT having any anesthesia that is a neuromuscular blocking agent, especially to the Calcium Channels.

In my case, if I were to have an anesthesia like that, it could cause acute respiratory compromise or even paralysis (b/c of the LEMS autoantibody that I have). I am presently functioning the best that I have done in five years, often at pre-illness levels, and no longer use a wheelchair and can walk again and drive my car again. My doctor said today that I should wait on the colonoscopy (for now, not forever) b/c the risks outweigh the benefits. I was literally thinking that the only way I could do it would be if I had written info that I could present to an anesthesiologist in a consultation and then I saw your post like you read my mind LOL!

I know the Myasthenia Gravis society has some info like this, but that is not my diagnosis, and I am not sure that it quite pertains to me. But this is something I am going to be thoroughly investigating b/c there will come a time in the future that I will have a procedure that requires anesthesia and the thought terrifies me for all of the reasons that I mentioned above.

Please jump in (simply create an account and hit "edit"). Too timid to edit the page directly? You can also make suggestions or link to resources in the "discussion" tab.

I wouldn't have a clue how to edit your account (and wouldn't dare touch it!) so am sharing my example here in this thread instead (in the hope that it is helpful to you or others). I think it is a phenomenal idea and is sorely needed.
 

brenda

Senior Member
Messages
2,261
Location
UK
@JenB

Wonderful! I had a bad reaction to nitrous oxide as a child, during a dental procedure, and came to with the dentist performing resuscitation. Two years ago l began to have gall bladder attacks with stones showing on ultrasound, and if course was advised to have them surgically removed.

I explained to the surgeon that l needed a consultation with an anesthesiologist but instead heard from his secretary that he did not consider me at risk (l have MCS and l am sure, MCAS).

I decided not to go ahead, but then had a very severe attack where my pancreas was involved, though l dared not go to hospital. That really scared me.

Fast forward to the cessation of the attacks on my plant based eating plan but l have made enquiries and found a hospital where they will take me seriously, and especially because one of their anesthesiologists was trained in India, where they have a huge problem with sensitivity to anesthesia due to the excessive use of pesticide which was the cause of the worsening of my sensitivity.

They know the problem and what is required.

I am still waiting for the app. even though l will probably not go ahead, however l will have it all on record with the testing they carry out, for the possibility of emergency surgery in the future.

The hospital is Freeman Road Newcastle.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Hi all! I'm working to improve the quality of information for patients with ME, fibro, EDS, POTS, mast cell activation disorder having surgery as well as crowdsourcing a set of best practices for hospitals.
@JenB excellent! Very much needed.:thumbsup:

My written "Testimony #18" submitted at the June 20-21, 2018 CFSAC Meeting deals with the critical need for educating ER -physicians and personnel (excerpt):

There is an urgent need to educate “Emergency Room” physicians in the diagnosis and treatment of “severely” affected ME/CFS patients.

Because of the current lack of trained primary care physicians and specialists, and because it will take years to train and fill that gap, ME/CFS patients are often forced to use Emergency Room services for care. I am such a patient.


The award-winning documentary UNREST clearly depicts the problems patients encounter when they go to an ER with severe symptoms and are treated by untrained medical professionals.

Hopefully members of the “Medical Education Workgroup” will watch the film; carefully research severe symptoms that drive patients to an ER, i.e., cardiac; neurological; immunological; infectious diseases; chemical, food and drug sensitivities; gastrointestinal, etc.; and develop diagnostic and treatment guidelines to appropriately train ER personnel in what to do and what not to do.


A comprehensive list of ME/CFS symptoms, even rare ones like cardiac arrhythmias, malignant hypertension, profound vertigo, seizures, etc. need to be included in medical education materials.

The sheer number and variety of ME/CFS symptoms is, in itself, a distinguishing feature of the disease, a fact that is unfortunately absent in recent definitions and materials designed to simplify and minimize disease complexity and severity. The result of this is poor, inappropriate, and at times harmful care.

Full text here:
https://www.hhs.gov/ash/advisory-co...ntations-and-testimonies/testimony/index.html
 
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Gingergrrl

Senior Member
Messages
16,171
I am bumping this thread so more people can read it who might have missed it the first time.
 

Moof

Senior Member
Messages
778
Location
UK
Some people with ME react very badly to adrenaline in dental/local anaesthetics – it can makes their blood pressure plummet to the point where they pass out. There are alternatives that don't contain adrenaline, to which most practitioners should have access.

Also, nitrous oxide can cause severe vitamin B12 depletion. As people with ME often seem to have low B12 levels to begin with, it's a good idea to supplement after having this kind of anaesthetic.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
What policies or training, had they been in place, would have improved the quality of your care?
My local hospital had a general awareness of orthostatic intolerance, though not ME. They take OI seriously now. If this is part of a patient's diagnostic findings then it pays to mention it, quite aside from CFS or ME.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I have had no hospital/ER interventions yet since I became unwell 4 months ago. I took anaesthesia well in 1997 but it might be a different story now. I have no idea.
But once I had a very bad reaction to a (double) local anaesthetic for a root canal. He gave me a double shot because he'd have to drill deep.
I went into a cold sweat and was nearly passing out and had to sit in the waiting room with head between legs. The dentist said it was the adrenaline in the local which did it. I only ever had that reaction once.

My dentist now insists on you updating any medical history for their records yearly.
(Sad....mine was always "no change", "no medications". But fully diagnosed or not, I shall mention it to him when I next go there.)

It seems it can be a bit of a minefield as do these people have any idea about how CFS works? Most of us aren't even that sure.
I would have NO idea if I have suddenly become allergic to something, for example, or will get a bad reaction! Not a clue.

I definitely agree that hospital staff should be trained to deal differently with CFS patients!
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I need to have a colonoscopy at some point b/c I am high risk b/c my mom died of colon cancer. However, there are several major risk factors for me with this procedure from potentially being allergic to the Prep drink

I had a pretty intense reaction to the prep drink the night before the procedure: nausea, sweating, low blood pressure, curled into the fetal position on the bathroom floor barely conscious for maybe 20 - 30 minutes. Scary.

I had to take more the next morning, but did not have the same reaction.

I told the staff when I arrived at the clinic, I'm pretty sure they didn't note it in my file.
 

perrier

Senior Member
Messages
1,254
Jen, this is another brilliant project. Bravo. However, I'd like to add in another aspect that really requires attention. Once the surgery is completed and assuming all the correct attention was given, there is the post surgery care. With this illness, the recovery does not regularly follow the trajectory of the 'normal' patient. I recognise this is a challenge too, but the post surgery period can produce a lengthy and severe downturn. I know this from family experience. Best wishes.
 

Gingergrrl

Senior Member
Messages
16,171
Some people with ME react very badly to adrenaline in dental/local anaesthetics – it can makes their blood pressure plummet to the point where they pass out. There are alternatives that don't contain adrenaline, to which most practitioners should have access.

I do not tolerate Epi whatsoever b/c of having POTS and if I should need a dental procedure in the future, I would only use anesthesia that is Adrenaline/Epi free. I actually tested out, after a lot of research, which dental anesthesia would be best for me (long story) and it turned out to be "Mepivacaine without Epi". Ironically, I have to carry an EpiPen in my purse b/c of MCAS but cannot even imagine what would happen if I had to use it which so far, I never have.

I had a pretty intense reaction to the prep drink the night before the procedure: nausea, sweating, low blood pressure, curled into the fetal position on the bathroom floor barely conscious for maybe 20 - 30 minutes. Scary.

Wow, that is so scary and I am sorry that happened to you! I am pretty sure that I will not do well with the prep drink.

Jen, this is another brilliant project. Bravo. However, I'd like to add in another aspect that really requires attention. Once the surgery is completed and assuming all the correct attention was given, there is the post surgery care. With this illness, the recovery does not regularly follow the trajectory of the 'normal' patient. I recognise this is a challenge too, but the post surgery period can produce a lengthy and severe downturn. I know this from family experience. Best wishes.

I agree that this is a phenomenal idea for a project and hoping that @JenB is reading our replies! I also agree with you @perrier that it is crucial for us to have info not only on the actual anesthesia/surgery but also on any required prep and also on the post surgical after care. None of us are normal and I have learned that none of the standard instructions apply to us!