"The best" of the Phoenix Rising ME/CFS Forums

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I recently read a post by Robin that struck me as one of the best posts I've read on the forum. It stayed with me and I realized that I would like to have a way to prevent great posts from not being seen by everyone or from getting lost in a long thread.

I keep some on my own computer, but think that these great posts are of on-going value to us as a community and to new viewers.

So - I came up with this idea of a "best of" thread, where we can add the posts that strike us as being "the best" in some way. I'll start it with Robin's post, and we'll see if others think it's a good idea.

ETA - Mark makes some good points about posting. Maybe a concise post with the thread title (linked to the original post), person, date and a brief summary would be good.

"German Study Finds XMRV" - bel canto, May 18th 2010
- XMRV, Major Breaking News, seeming to confirm presence of XMRV in Europe and the inadequacy of the failed studies
 
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Robin on 'the sick role' and 'false illness beliefs' as espoused by Simon Wessely

#10
Robin May 17 2010

DysautonomiaXMRV said:
''Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time of work, benefits etc)''

1992. Chronic Fatigue Syndrome: current issues. Wessely, S. Reviews in Medical Microbiology 1992:3:211-216
More on the sick role (http://en.wikipedia.org/wiki/Sick_role)

Sick role is a term used in medical sociology concerning the social aspects of falling ill and the privileges and obligations that accompany it.[1] It is a concept created by American sociologist Talcott Parsons in 1951.

Concept

Parsons was a functionalist sociologist, who argued that being sick means that the sufferer enters a role of 'sanctioned deviance'. This is because, from a functionalist perspective, a sick individual is not a productive member of society. Therefore this deviance needs to be policed, which is the role of the medical profession.

The general idea is that the individual who has fallen ill is not only physically sick, but now adheres to the specifically patterned social role of being sick. Being Sick is not simply a state of fact or condition, it contains within itself customary rights and obligations based on the social norms that surround it. The theory outlined two rights of a sick person and two obligations:

Rights:
The sick person is exempt from normal social roles
The sick person is not responsible for their condition

Obligations:
The sick person should try to get well
The sick person should seek technically competent help and cooperate with the medical professional

There are three versions of sick role: 1. Conditional 2. Unconditionally legitimate 3. Illegitimate role: condition that is stigmatized by others
If Wessely weren't so malicious he would be fascinating! You can just deconstruct how he thinks, it's so antiquated and academic.

My experience with being sick hasn't matched this "concept" of the sick role at all. First, the exemption from responsibility is not clean at all like stated above -- you're still responsible for yourself, just unable to attend to your responsibilities like you used to so it's a huge struggle. That loss of function is so devestating.

Contrary to the notion of priveleges of the sick role, it's actually a lot easier if people don't know you are sick. Having observed people with non-maligned diagnosis (such as cancer) become stigmatized or treated with fear, or treated oddly, I'd much rather people not know that I'm ill. If they do find out, I'm often faced with a series of questions about my illness and how it feels, and the subsequent uncomfortable and awkward position of watching someone work it out in their minds the life implications and the concluding horror. It's better for me to "pass" socially as a well person.

As far as relationships go, they must change or adapt -- you're not simply "exempt" from them. Many fall away. There is no social benefit to illness. The worst part is watching people you love grieve the role you used to play in their lives. It's like watching your own funeral and the most painful thing I've ever gone through.

Losing an education and a career is the second worst part of being ill for so many years (the worst is not having children.) There are so many psychological advantages to working and earning your own money. There's the mental stimulation, sense of reward, and neurological benefits of learning. I've missed out on so much. Being on disability is, personally, humiliating. I hate it. But how else am I supposed to survive?

The notion that millions of previously happy, well adjusted, productive people are sick because of false illness belief gets more ridiculous the longer you think about it.
 

garcia

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Hey Island! I was the one who originally marked that message as one of the best I'd seen in a while. It is definitely a keeper.
 

justinreilly

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I like this idea. Also good that you put up a title. Maybe one 'best of' thread for each sub-forum? or maybe i'm getting ahead of myself and this can be done later.
 

Mark

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Great idea! Been meaning to say for some time...how about a daily thread for best post and thread in various categories (science, advocacy, testimony, research, etc) nice and terse like this:

"German Study Finds XMRV" - bel canto, May 18th 2010
- XMRV, Major Breaking News, seeming to confirm presence of XMRV in Europe and the inadequacy of the failed studies

"I'm sad" - Shrewsbury, May 14th 2010
- Lifestyle Management (sharing grief and finding comfort and enlightenment together through conscious wallowing and teacups)

"Dear Brave Souls" - Merry, May 18th 2010
- Introduce Yourself (referencing Merry's brilliant 'hallucinatory collage' "Sick")

People could post their faves and their own best posts as a sticky page on their own blog pages; been meaning to start doing that myself for a while now...
 

Mark

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PS: Reminder that to link to an individual post you can click the number of the post at its top right to go to that link, then copy the link from your browser's address bar, or (probably) copy it using the menu you get by right clicking on the page. A 'best of' thread would be most valuable without long extracts, I suggest, and it'd be cool if the first page of the thread was a 'maintained' list of best links...
 
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PS: Reminder that to link to an individual post you can click the number of the post at its top right to go to that link, then copy the link from your browser's address bar, or (probably) copy it using the menu you get by right clicking on the page. A 'best of' thread would be most valuable without long extracts, I suggest, and it'd be cool if the first page of the thread was a 'maintained' list of best links...
are you volunteering?:Retro tongue::D

I do agree it would be great to have a table of contents as it were, sas she who wants to database the world. It's times like this that the weaknesses of the forum's organizational capabilities are exposed (but it still seems much better than other formats I've seen).
 

gracenote

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PS: Reminder that to link to an individual post you can click the number of the post at its top right to go to that link, then copy the link from your browser's address bar, or (probably) copy it using the menu you get by right clicking on the page. A 'best of' thread would be most valuable without long extracts, I suggest, and it'd be cool if the first page of the thread was a 'maintained' list of best links...
Mark,

It no longer works for me to click the number of the post to just get that post and link. (I'm using a Mac.) It used to work, but not since the "upgrade." Any help with that?
 

spindrift

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I am really not a person that gets teary easily but Lily's post an May 2, 2010 did it.
With a few simple words she caught the whole devastation of this illness in her post
#45 on the Plea from Dr. Bell to donate to the WPI thread.

http://www.forums.aboutmecfs.org/sh...onate-to-the-WPI&p=76448&viewfull=1#post76448


What if every member of Phoenix Rising could give $1 for every year that they've been sick? How many years of our lives have all of us collectively given to CFS?

If ten million people are sick, how many years, how many lifetimes have been taken?
 
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2010 ME/CFS Awareness Day Lectures at the University of Miami

Nancy Klimas, MD, presents a comprehensive update of current research findings as well as the latest clinical advances for ME/CFS and FM.

http://cfsknowledgecenter.com/expert-assistance.php

Fantastic overview of the state of the science and treatment. She may have the best "big picture" view of ME/CFS.

ETA Thurs someone seems to have deleted the whole thread this is from, and the title of it and link to it from this post :(:confused::eek:

ETA Fri Not sure what all happened, but Otis has fixed it. :victory: Thank you Otis! :D The thread is back. Here's the title and link to it.

Nancy Klimas Recent Lecture ME Awareness Day 2010
 
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flybro's signature

New Diagnostic criteria for ME/CFS/FM XMRV:
:victory:Courage Intelligence Endurance Compassion Empathy Humour Laughter Strength Patience Resiliance:victory:
 
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Clinical depression often blamed before diagnosis of fibromyalgia

May 18, 2010 The Toronto Star
Vivian Song

While the title refers to FM, the patient has ME/CFS as well. This article gives quite an accurate picture of what it is like to have ME/CFS, FM or MCS in Canada.

Misdiagnosing illnesses like fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome, and multiple chemical sensitivities as psychiatric problems and figments of the imagination is common practice among todays doctors who lack a general understanding, says Dr. Riina Bray.

We have to educate physicians so that they dont blow patients off as looney, says the medical director of the Environmental Health Clinic at Womens College Hospital. Thats probably the easiest way out, to blow them off as psychiatric issues.

But theres a huge difference between people who suffer from depression, and those who suffer from legitimate medical conditions, adds Alison Bested, a hematological pathologist and specialist at the same clinic.

People who are depressed, for instance, are so low emotionally they can find little inertia to get going and have lost all enjoyment of life, Bested says. Meanwhile, those who suffer from one or a combination of the three illnesses live for their good days, she says.

On a good day, these people are off to the races.
 

Dolphin

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I like this idea. Also good that you put up a title. Maybe one 'best of' thread for each sub-forum? or maybe i'm getting ahead of myself and this can be done later.
Yes, I like that idea (I'm more interested in some forums more than others at the moment). Maybe it could be a sticky at the top of a forum. Also, maybe a post shouldn't make a "best of" thread until a certain amount of time has passed (a person could always store it themselves). Maybe that isn't necessary but just thought there might be a lot of temporary excitement and end up with too many in the "best of" thread.
 

Dolphin

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A link to an existing "best of" type thread

_Kim_ made this thread:
Excerpts: Exercise quotes from the Big Talk
http://www.forums.aboutmecfs.org/showthread.php?4432-Excerpts-Exercise-quotes-from-the-Big-Talk

which was a bit like a "best of"
Time for the Big Talk. How's the CAA doing?
http://www.forums.aboutmecfs.org/showthread.php?820-Time-for-the-Big-Talk.-How-s-the-CAA-doing
- there were 1724 posts in that thread, which is more than some sub-forums!

(although there were probably advocacy ideas, etc. in that thread not covered)
 

Misfit Toy

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A great idea. I love the one called "I remember" by Mark. Totally moved me. I think "the best of" is really a brilliant idea.
 

citybug

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I'd rather see them posted here, or a paragraph and link to see more. Then you can see the ones you want to read. I read the ones here, but it takes longer to click on links. And I can't choose a part.

DysautonomiaXMRV
Help will come for ME/CFS

Quote Originally Posted by Esther12 View Post
I'm tending to be insitinctively negative about a lot of XMRV stuff
I'm the reverse myself.

One study (SCIENCE), never replicated (so not disproved) runs at 98% infection rate of well defined neuro immune disease. Shows virus budding, confirmed not to be contamination by 3 sources, one a government agency (CDC). Dr John Coffin (world expert on retrovirus in mice for decades ) also has stated it is not contamination.

Days ago, we had verbal report at the invest in ME conference in UK from a world renown American neuro immune disease specialist, Dr Paul Cheney - reporting that using same detection method as WPI (WPI licensed test to VIPdx and Cheney used VIpdx) that his patients are 80% infected. As his patients are simply guessing they have ME CFS, (there is no test), this is an absurdly high number statistically when the healthy population are infected at around 2-4% with XMRV - now demonstrated in three seperate countries thousands of miles away from each other. (USA, Germany, Japan).

No other reports of negative studies using same method as WPI & Cheney have come out. I'm very excited as all 'failed' methods did not use a proven method to detect XMRV that was so good, it was published in SCIENCE - the best medical journal in the world.

XMRV has also been dectected in respiratory tract, in multiple organs of monkeys after infecting them with XMRV (Dr Ila Singh), and in patients with Autism.

see more http://www.forums.aboutmecfs.org/sh...-press-release-!&p=86048&viewfull=1#post86048