• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Guardian Newspaper Open Thread

M

MEKoan

Senior Member
Messages
2,630
Those in the UK, and those who would support them, please check this out...

http://www.guardian.co.uk/commentis...llcomments=true&commentpage=1&commentposted=1

It seems the conversation cannot rise above accusations that the ME community behaves badly and refuses to accept a diagnosis of mental illness in order to avoid the associated stigma.

This is so horribly wrong and unfair. If you are feeling eloquent, please do what you can to address this situation.

I have a stepchild with a serious mental illness, anorexia nervosa. I posted the following:

WistM

10 Oct 09, 8:38pm (1 minute ago)

The only reason that ME patients resist a diagnosis of depression or other mental illness is that it is inaccurate and treatment for an illness we do not have will not work.

I have a beautiful child with a serious mental illness. I understand the sensitivity of those who hear only the desperate chorus of: we're not depressed! However, we would happily accept a diagnosis of depression if it led to useful and effective treatment.

I believe you will find the ME community has a great deal of hard won empathy for people with mental illness. We understand what it is like to be marginalized in the way patients in both communities are. My child does not have an easier time of it than I do.

All we ask is that the diagnostic protocol and the resultant treatment be scientifically sound. Stop diaguessing us! Follow the science. That's all.

That should not be too much to ask.
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
Koan,

I saw that thread deteriorate in no time flat.

You wrote a beautiful comment. Said it all very well.

It is beyond me to post something there, but I was feeling bad about not being able to do it. Yours was everything I could have written, and then some.

Thank you. :)
 
Lelvina

Lelvina

Messages
60
The thread really HAS gone crazy. The first few comments have been removed though.



World mental health day trying to myth bust, the derogatory distancing language and attitude ("I'm not one of them, God forbid" ) used by some ME/CSF sufferers has to be deplored.
Click to expand...

*sigh*
We just want treatment.
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
Just went and read most of that thread of comments again. Quit before I finished.

Try to keep in mind, guys, that the comments there are not some cross section of public opinion. Any yahoo can write a comment.

On this thread, unfortunately, many yahoos did.

We do NOT need to concern ourselves with what they think.

Even if they WERE representative of public opinion (which they are NOT) that really has nothing to do with us.

Nothing to do with us. They can say what they like. We will continue to live our lives as best we can, like we were before all this came up. We will continue to live our lives, as we wait for the data to be refined into a form that we can do something with.

It matters only what WE think. Not a bunch of people with no clue who wrote to a newspaper. "click" and they're gone. Yes?
 
M

MEKoan

Senior Member
Messages
2,630
I took a break. I haven't been back yet. It is a glimpse of what those with ME in the UK face. Terrible, dreadful, awful. It was so upsetting.

I wonder where all the UK activists are. Then, I thought with all the GET they are in no shape to post. It's scandalous.

:(

Jody is right. Jody is very soothing! We love Jody!

:p
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
The website I write for has space for comments at the end of each article. Anyone can post anything. If it's offensive or spam an editor will remove it.

For the most part, comments are done properly there. But I have been writing a series on Asperger's Syndrome and one poster in particular was getting ... pugnacious. rude.

Someone else from the site posted something to calm things down. Later, the same thing happened again. One person railing against Aspies. All done anonymously so it's hard to be sure but it sounded like the same woman back again.

I refuted her slurs with information and so far that has been that.

Anybody can post anything in those arenas. We choose who we give air time to in our thoughts. And ... we know who we are.
 
Dreambirdie

Dreambirdie

work in progress
Messages
5,569
Location
N. California
thank you for these words

"We choose who we give air time to in our thoughts. And ... we know who we are."

Jody!

This is SO YUMMY, I am going to make a bumper sticker out of it. Seriously. I already typed it up to tape to the wall over my desk.

Very well put, and empowering. thank you for the reminder. ~Dreambirdie
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
dreambirdie said:
"We choose who we give air time to in our thoughts. And ... we know who we are."

Jody!

This is SO YUMMY, I am going to make a bumper sticker out of it. Seriously. I already typed it up to tape to the wall over my desk.

Very well put, and empowering. thank you for the reminder. ~Dreambirdie
Click to expand...

Well ... thanks dreambirdie. :)

Just the stark bare truth though, isn't it? As long as we remember this it will help anchor us against the crap.
 
M

MEKoan

Senior Member
Messages
2,630
Yodi, We cannot resist appropriate alliteration.

And, you'll always be a wise wee creature to me!
Koan
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
Well, as long as it's appropriate alliteration.

Wouldn't want it to be some inappropriate kind. :)
 
M

MEKoan

Senior Member
Messages
2,630
Ok, a little rest, a little Jodying and I was ready to go back and look at the Guardian.

I am happy to report that sanity has overtaken insanity - which was pretty stunning - and many voices of reason can be heard in the land.

My family left the UK when I was 5. When the Beatles became popular, I was really annoyed with my parents for taking me away from such a cool place and moving me to such a cold one. I would like to take this opportunity to apologize to my parents who actually did know best!

Thanks all and to all a good night,
Koan
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
dreambirdie said:
I LOVE the stark bare truth! The starker, the better!

AND YES! CRAP ANCHORS are essential TOOLS for survival. ;):);):);):):):):):):)
Click to expand...

dreambirdie,

I think I knew that about you dreambirdie, that you love the stark bare truth. I think it is part of what is helping you to thrive in spite of (or because of?) the spartan-ness of the life that challenges you. :)

Crap anchors -- I like your turn of a phrase. :D And yes, we could be lost without them, for sure.

Life has taken on more colour for you lately I've noticed. :) Jazzy lookin' post. :D
 
Tammie

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
guardian article

I posted a comment in the guardian, under the name formermarathoner....what I wrote there got me thinking about stuff I wanted to say for the CFSAC meeting, and I wound up submitting written testimony for that, too......so in a weird way I am kind of glad that I saw the Guardian (even though what I submitted for the CFSAC inc a lot of other stuff, too)

I wanted to get feedback on what I submitted, but by the time I finished I figured it was too late, and I was so fried that I couldn't even remember what my user name for this site is (and it's my real name!) Yep, I'm just a bit wiped


I did email it to a few people, though, and got really positive feedback, and re-reading it, I was happy with it, too....hopefully it will help

I am glad to read here that several others are submitting stuff to the CFSAC, too, and that the comments on the guardian did improve
 
Jody

Jody

Senior Member
Messages
4,636
Location
Canada
Tammie,

Well you may not be able to remember your name but it sounds like that's no wonder after all the work you've done. :D

Good for you. :)
 
You must log in or register to reply here.
Back