Discouraging News for Canadian ME Patients

[user9876]

The good thing about this is at least the reviews are in the public domain. It demonstrates how those who believe in the psychosocial approach are blocking research in other directions.

 

[Seven7]

Show this letter to every ME Blogger to educate the Canadian public
Maybe the ME association to do a meeting and bring the latest research links and maybe do an educational workshop for the representatives.

 

[ScottTriGuy]

Defies logic and reality.

It makes one wonder if it can't just be ignorance and incompetence.

Sadly, this is just the most recent example from the new review system that is taking a lot of flack - Minister of Health Philpott had to call a special meeting recently to deal with researcher revolt. But this review has got to be the winner for just plain stupidity.

An embarrassment to the Canadian research review process. And a bright shining example of how the Canadian healthcare system makes victims of ME patients.

 

[JaimeS]

Writing article on this now. Infuriated.

 

[JaimeS]

One reason I say that is because they insist on citing Straus' 1988 acyclovir trial (#18), in which 11 patients who received acyclovir reported similar "improvements" to 10 who did not.

Just one problem: The trial was conducted before the 1988 Holmes criteria were developed. In retrospect, it turned out that only six of the original 24 patients recruited actually met the less than stringent Holmes criteria. It's conceivable that only three Holmes patients were among the 21 who finished the trial, and it's unclear how those few Holmes patients (3~6) were randomly distributed between the two arms.

Citing u. Are you sure?

 

[Valentijn]

Writing article on this now. Infuriated.

They won't like you when you're Infuriated

 

[AndyPR]

They won't like you when you're Infuriated

OMG!!! Is Jaime going to Hulk out again???

 

[JaimeS]

Hey, all, d'you remember a convo in which we discussed the way that all personality based medicine eventually throws something in about the HPA axis? It was really funny. Anyone remember?

 

[JaimeS]

OMG!!! Is Jaime going to Hulk out again???

YES I AM

 

[ScottTriGuy]

Writing article on this now. Infuriated.

Awesome!

I'm drafting a press release from Millions Missing Canada but would love support from some body with more (any!) experience writing a press release.

 

[JaimeS]

Just tweaks, now, folks look for it in 15 or so

 

[alex3619]

5.25" floppy disc.

I wonder if stone tablet or papyrus scroll might not be more appropriate sometimes. We needed a Rosetta stone to figure it out, and amazingly along came the PACE trial. It should be famous. Not for answers about CFS, but because it incorporates in one single study a range of fallacies and biases that probably rival any other study ever made. Now that scientists and statisticians have become aware of this the heat is turning up. The PACE trial will mostly likely be ashes in the annals of medicine, the question is when. Tomorrow would be nice, five or ten years is more reasonable.

 

[JaimeS]

This started off as a news piece, but then I got more and more sarcastic until I had to say it was an opinion piece. Please promote and comment if you like it; opinion pieces end up way at the bottom of #MEAction's site:

http://www.meaction.net/2016/08/26/canada-officials-turn-down-grant-app-because-cfs-isnt-real/

 

[JaimeS]

Meanwhile, to help keep narratives like this in the trashcan where they belong -- with pride of place beside your VHS player and your 12-gallon bottle of Dep -- please consider donating to my fundraising campaign to hire a PR firm for #MillionsMissing. We need accurate stories out there to swamp out the awfulness that is this.

Here is the fundraising page: https://www.crowdrise.com/millionsmissing-round-2

If you scroll down, you can donate to me directly and help me reach my goal of $9,000 for a PR firm.

FIGHT THE POWER GUYS.

 

[ScottTriGuy]

Excellent.

Tweeted.

 

[JaimeS]

Note the tags on the article...

 

[frog_in_the_fog]

​

Here is the fundraising page: https://www.crowdrise.com/millionsmissing-round-2

If you scroll down, you can donate to me directly and help me reach my goal of $9,000 for a PR firm.

FIGHT THE POWER GUYS.

 

[duncan]

This started off as a news piece, but then I got more and more sarcastic until I had to say it was an opinion piece. Please promote and comment if you like it; opinion pieces end up way at the bottom of #MEAction's site:

Good crisp writing with a refined sense of evisceration.

 

[JaimeS]

....AND WE HAVE THEME MUSIC.

WTH you guys are AWESOME.

 

[joeblow604]

This started off as a news piece, but then I got more and more sarcastic until I had to say it was an opinion piece. Please promote and comment if you like it; opinion pieces end up way at the bottom of #MEAction's site:

http://www.meaction.net/2016/08/26/canada-officials-turn-down-grant-app-because-cfs-isnt-real/

Thanks for writing this...