Medical forum making fun of ME/CFS patients

[taniaaust1]

Isn't nursing one of the professions at higher risk for developing ME? Now wouldn't that be ironic?

Yes I believe that so.. more health care professionals and teachers get this illness.. so its kind of irronic for one of those groups to be knocking ME/CFS. It is understandable some thou due to naivity around it the illness.

We arent just talking about nastiness here but peoples own naive beliefs on what the illness is about, hence the "bar talk".

If at least one of them comes to realise that ME/CFS is actually a serious illness, which has has a lot of suffering around it.. a reply to their board is worth it. (bashing those who are making the comments thou wont help to bring any understanding).

Some of them havent even been able to believe and comprehend that the one in the photo is a real person and not a manakin, who isnt looking real to some of them, due to being so sick. (I guess that isnt helping when some dont even believe the article is real).

 

[Carrigon]

They won't be laughing for long. Wait till they are force vaccinated for their jobs. Cause guess what, it's coming and already here. As they get sick and disabled from the vaccines, let's see who's still laughing. Give it a little time.

 

[Jemal]

Looks like a bunch of trolls to me, probably best not to feed them...

 

[Little Bluestem]

On a brighter side, I just finished reading a book written by a nurse for RN's that deals with ME/CFS. A wonderful book that definitely says that ME is not psychiatric disorder, that CBT is not appropriate, gives tons of information about re: symptom alleviation that does not focus on medications.

Since many of us have to be our own doctor and nurse, would this book be useful to us? If so, would you share the title and author?

 

[Little Bluestem]

If you want to see that forum without being identified as coming for here, you can copy the link and paste it into a new tab or window.

 

[TheMoonIsBlue]

Are these people still active nurses or medical assistants? I did not and will not visit the site. Because if so, if their identities become known, they are seriously In jeopardy of being fired. There is zero excuse for anyone working in the medical profession to mock any illness or patients online. They may talk amongst themselves in private and say whatever they want...free speech and all...but posting this sort of stuff online? Unprofessional and unethical.

I have great respect for wonderful, compassionate nurses. It can be a difficult job and the ones who are efficient and caring can make alll the difference in a patients lives.

It is also true what has been sais that there are a lot of "medical assistants" who simply go through a one or two year-or less!...education program. I see advertisements on tv all the time to become some sort of medical assistant in as little as 12 months? No idea what they actually do but are I am sure they know nothing about most diseases especially one as complicated as me/CFs or fm.

 

[taniaaust1]

Since many of us have to be our own doctor and nurse, would this book be useful to us? If so, would you share the title and author?

One booklet I think everyone should have as it contains quite a bit of very interesting info.. is the ME/CFS A clinical case definition and guidelines for medical practioners (an overview for the canadian consensus doc booklet (its 20 pages long).

If you havent read this online or want to order the booklet (it used to be only a couple of dollars to buy it) http://sacfs.asn.au/ its on the right side if you scroll down the page.

 

[Valentijn]

The forum where the posts were made is just an addition to a blog. That forum exists so that people reading the blog can chat and such. Parts of the blog are fairly amusing and give insight into the career of being an ER nurse. And parts go way too far and cross some pretty serious lines.

The blogger who owns the forum has made some very nasty blog entries mentioning CFS, and especially fibromyalgia. I think part of the problem is that she works at the ER of a large hospital in a large-ish city, and the people she sees coming into the ER claiming to have FM and needing drugs for pain aren't typical FM patients, if they are FM patients at all. She sees a lot of people claiming to have various problems coming in to get pain meds, and many of them are probably addicts. FM is just another lie for some people to try, when the other lies don't work anymore.

But most people with FM and ME/CFS do not go to the hospital for pain, and most of us know that the drugs those addicts are looking for do little or nothing for our pain. I've never been to an ER, but I can't imagine how they could help with my pain or any of my other typical problems, and the exertion of even getting there and sitting in a chair that long would just be miserable.

She has unfortunately extrapolated from her very limited experience in an ER to conclude that all chronic pain conditions are fake, unless there is objective proof of their pain.

 

[SilverbladeTE]

My Mum was a nurse, damn good one, she got crippled because she was compassionate
Patient who'd had an amputation fell as they were moving him, nowadays they are trained for good reason to let them drop (may soudn callous but it's necessary or the nurse will get seriously injured)
Mom didn't let go, as she didn't want him hurt, so him grabbing/holdign her as he fell, broke her back.

Mum was from the "old school" back in 50s/60s, when they cleaned the wards themselves, OMG, love her but she's a freakin holy annoying terror when it comes ot house work, everything had to be spic span and perfect 'cause that's how she was as a nurse, arrrrrgh!
you can't divorce or bury yer mother under the patio, lol, so I stuck to doing stuff outside the house and other work cause she'd drive you bloody barmy, tleling you how to do everything, etc

She saw quite a few appalling screw ups and saved several folks lives before that injury forced her to stop working as a nurse:
-a nurse BLOWING up an IV line to "clean it", yeha right, millions of bacteria form her mouth will help, FFS...
-A doc going to inject a patient with 100 times the dose of a vaccine
-And her sister (my aunt obviously) as wee girl got Diabetes Type 1 suddenly, so Mum was visiting and went ballistic on the nurse and doctor who were there, 'cause in her words
"Do you bastards like playing Nazis? Seeing how much air it takes to kill a child?"
cause the assholes were sitting there wathcing as bubbles were clearly moving down the IV line into my aunt's arm and these two twats never noticed (though one can think of worse things going on perhaps)

Mum often got in trouble for "daring to speak back to doctors", cause a fair number of them were petty, stupid bastards, especially consultants.
Fortunately the head matron supported her.

As I've often said, the problem is with the PROFFESION, the system stinks, it encourages "omerta" allows murderers free reign, bigots to act with impunity etc.
It's a fault all organizations/groups suffer, another scandal of sex abuse in religion has emerged, this time in Orthodox Jewish community in USA, and what do folk do? attack the ones who exposed the perverts (some were parents OF abused kids who were attacking the whistleblowers, FFS)!!
Because all the morons think about is the "reputaiton of the organization/group"
Meh

And these folk on that forum who're the worst, are obviously just p**sheads, not worth bothering about
except their ignorant bigotry can and does affect other people.
If this was in regard to race creed or colour, they'd get read the riot act.
Such abusive and ignorant talk in professional bodies, leads to bad practice, which leads to negligence or worse.
They have every right to behave like assholes, like it or not, and so do we
Except when it comes to actual harm to others.

 

[Esther12]

I think part of the problem is that she works at the ER of a large hospital in a large-ish city, and the people she sees coming into the ER claiming to have FM and needing drugs for pain aren't typical FM patients,

Also, the problem is that people think it's acceptable to make claims about patients with a diagnosis based upon those sorts of experiences. I think that they'd realise it was not acceptable to treat Jews or gays in such a way - but people whose health problems are not well understood? Perfect bait for sardonic internet lolz (ie: thoughtless and stupid comments).

It's possible that they really don't think viewing patients in this way will affect the way that they treat them, but again, I expect that they would realise the weakness of this claim were it put forward by US police officers who had spoken in a similar way about African-Americans.

I've not had any problems with chronic pain, but to me, fibromyalgia sounds like a terrible condition to have to live with, and some people with FMS do feel unwilling to seek medical help because of the sort of responses they get from medical staff, leading to even more problems. The culture of institutionalised prejudice that hangs around patients with certain diagnoses, and many medics see as acceptable, is pretty repulsive to me.

As I've often said, the problem is with the PROFFESION, the system stinks, it encourages "omerta" allows murderers free reign, bigots to act with impunity etc.
...

And these folk on that forum who're the worst,

I agree that a big problem is the way in which the medical profession is regulated, the culture of loyalty which leads to professionals making excuses for one another, and the desire to maintain respect for the medical profession.

As you'd just been talking about sexual abuse, I'd probably disagree that those folk on that forum who are the worst!

 

[Min]

Those of us in the Europe with M.E. have had decades of open abuse from the medical profession. I do wonder why the nurses on the crass Pollination forumthink that Karina would actually receive any nursing care if she were in hospital when so many people over here with severe M.E., such as Sophie Mirza, were deliberately denied even the most basic nursing care.

In the Isle of man, nurses deliberately and repeatedly left a child paralysed with M.E. lying in his own urine for hours because they had been told he was faking the illness. A friend of mine with severe M.E., unable to walk, was forced to crawl on her hands and knees for food in hospital whilst amused nurses looked on.

All nurses involved ignored the fact that M.E. has been classified as a neurological illness by the WHO since 1969.

They were all just obeying orders.

 

[Sparrow]

I truly hope that at least one nurse in there reads some of what we have to say, and opens their mind at least a little. I did find it a little fascinating to see the places where we seem to have a disconnect. Maybe one patient, someday, somewhere will be helped because of something that happened there.

There are some wonderful nurses in the world. These ones seem to be misguided in a lot of their assumptions about our illness.

 

[frenchtulip]

I don't plan to waste any energy on the blog. Some people love to be closed-minded and believe whatever they want to believe. They love to ridicule and hate others. It is unfortunate they are in the health care field and get satisfaction from making fun of an illness they do not understand. I will not dignify their comments with a response.

 

[alex3619]

They were all just obeying orders.

Hi Min, so were the guards in the concentration camps in Nazi Germany. Obeying orders is what people tend to do even when it leads to considerable harm. Some do speak out though, and some of those are nurses. There is a history of nurses speaking out in my state, to the public good. If something is seriously wrong, and nobody can do anything about it, its a great public good to be a whistleblower. The downside is that, despite the occasional law to protect them, their careers are often over - they get persecuted.

The other thing is they are not just abeying orders - their attitudes about those orders is important too.

I could go on about the irrational grip that some psychiatric models have on the medical profession but I am writing enough about that elsewhere.

Bye, Alex

 

[Hell...Hath...No...Fury..]

Oh dear, I wasn't going to look because there's no point wasting energy dwelling on negative comments and then I read the first post from the link and its quite some time since I've heard nastiness like that so I kept reading lol ... it was all pretty bleak and sad from all angles; then there's our people with ME/CFS making posts trying to educate them thinking it will somehow help, forgetting that these people really do not give a sh*t nor are they hiding this fact and find the whole thing amusing. It saddens me that a few people have used their precious energy trying to get though to these 'people' trying to make them 'see' I can understand why, but can also see the pointlessness of it all when dealing with that type of person, never have I seen it more clearly than when reading that forum.
Its made me realise something though... just how far i've come in the last 14 years. 10 year ago those comments would have really hurt me personally and I would have felt it as a personal attack, nowadays though and after years of experience, all I feel is pity for them. To read such sickenly, disgusting and totally ignorant comments and yet at the end of it only feel real genuine, pity for them is good enough for me. I know they will be of the attitude that they don't need, nor asked for my pity, but being seriously ill for such a long time has made me nice like that so they got it regardless awww its made me feel all warm and fuzzy inside, almost to the point of nausea

 

[alex3619]

Sometimes correcting misinformation is not to educate those who are making the error. Anyone who discovers these posts will read our educational material and realise there is another side to the story.

 

[Undisclosed]

Since many of us have to be our own doctor and nurse, would this book be useful to us? If so, would you share the title and author?

The book is called 'What Nurses Know ... Chronic Fatigue Syndrome' by Lorraine Steefal

Here's a review:

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"Registered nurse Steefel's daughter was diagnosed with CFS at age 12, and the ...​

"Registered nurse Steefel's daughter was diagnosed with CFS at age 12, and the author uses her experiences and those of other sufferers to inform readers about the disease, its symptoms, and possible therapies. Steefel explains alternative treatments such as acupuncture, massage, yoga, and tai chi and suggests strategies for managing daily life. Working with one's health-care team, keeping detailed personal health records, and finding an advocate are stressed. With a glossary and resource listing...this is a good, basic text on a frustrating disease."--The Bookwatch "Lorraine in What Nurses Know; Chronic Fatigue Syndrome, addresses what patients with CFS need to know in order to maximize their quality of life. Biomedical research needs to better define the cause, or more likely the causes, Medical Doctors should diagnosis (not disregard) and treat the multiple symptoms of CFS, but it is the nurse who best explains and cares most for the patient with chronic medical illnesses like CFS. Lorraine provides the information she has learned as a nurse and medical writer with the compassion of a mother who has cared for her child with CFS."-...​

​

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I know a certain group of nurses that might want to read this.

Kina.

 

[Googsta]

I can't see how reading the comments can help anyone, of course their are some questionable characters in medicine, there are questionable characters in every walk of life.

I have had really good & really bad doctors, specialists, ambulance officers & nurses.
I had a nurse go against doctors orders once, I was so grateful to him for what he did. I often wonder if he got in trouble for what he did, I hope not.


Silver, your Mum sounds like an amazing person I love your candid descriptions of her lol.

 

[Min]

I'd like to thank them for reminding me why I and tens of thousands of others with this neurological illness avoid the medical profession at as much as possible.

I don't have to post the thanks on their forum as my posts here are being reworded before being reposted there.

One senior nurse who campaigns for biomedical research is husband and carer to the severely affected woman they are jeering at as a 'nodding woodpecker'.

Here's another person they're jeering at who was left in his own urine for hours when a child paralysed by M.E., talking about his experience of medical care for M.E.

 

[Hell...Hath...No...Fury..]

I've just printed off a few pages from their thread so I can use them as the perfect example of why so many people with ME are defensive in nature, never have I seen it summed up so well in one small place.
A lot of normal 'decent' people don't realise the utter crap we have to put up with from medical morons because it doesn't occur to them that it actually happens in reality. These twits have given a perfect example of what we're talking about when we try to explain that often dealing with people's warped attitudes is often the worst part of the illness. Now i've printed it off, I don't need to ever go back there again. There's enough sickness among themselves in there, they don't need us adding to it with our 'fragility and insanity', they already have more than enough of that to share between them. I'm feeling a bit chilly today... think i'll tootle off and 'human combust' today to save on the heating bills... people with ME can do that you know! a nurse said it... so it must be true!