Canadian Consensus Clinical Case Definition for ME/CFS -Important to Read

[TheMoonIsBlue]

Hi All, this has probably been posted before but I thought I'd make a new post.

I think the Canadian Consensus Criteria for ME/CFS ("CCC") is very important for everyone to read. Not only can it help you and your doctor and family understand what ME/CFS really is, (FAR beyond the dismal CDC's defintion) it also contains lists of diseases to be ruled out and some recommended blood tests. It really gets to the core of the symptoms a person with ME/CFS experiences, some explainations on why these symptoms and problems occur, and basically how this disease is Multisystemic and not just "Fatigue".

I would encourage everyone to read it when possible (it is long!) and hopefully encourage doctors to read the pertinent information......

http://www.cfids-cab.org/MESA/ccpc.html

The "ME/CFS: A Clinical Case Definition (abridged version of the 2003 Canadian Clinical Case Definition)" link is the easiest one to read and you can print out certain pages you may find helpful.

 

[*GG*]

Thanks for the reminder, will have to do some time.

GG

PS Where can I find a place to download this?

 

[TheMoonIsBlue]

Hi, it should be able to be downloaded and then saved on your desktop or as a file using Adobe, that's how I saved a copy.

It says "To access this document, which includes the diagnostic and research-overview parts of the ME/CFS case definition in PDF format, click here. PDF files require the use of an Adobe Acrobat Reader. If you do not already have one, it is available as a free download here. For an HTML excerpt containing criticisms of Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET), click here."

 

[AliceZ]

Thanks! Looks like it'll be an interesting read.

 

[pamb]

Very timely. I've just sent the link to the overview page and download to a new neurologist my husband may be seeing Jan 28. I sent it in an email, saying he had been diagnosed ME/CFS with the CCC, and asking if she was interested in treating him with this understanding. Or, if she was not interested in ME/CFS to please let us know and I'd save her time and my hubby the arduous (for him) 2 hour drive to see her.

I just sent it last Thursday, so we'll see what happens. I also included the excellent Dr.'s resource link from Andrew. http://forums.aboutmecfs.org/entry.php?398-educating-your-doctor-(and-you)&bt=2626#comment2626

I'll let the forums know what happens as this is the first time in 5 years we've actually tried to get some help. We gave up five years ago when the specialist count was over 20 and the best suggestion was narcotic painkillers and somataform illness.

 

[meadowlark]

Hi Moon: I somehow 'lost' my copy of the CCC (probably trashed it in a moment of brain fog) and was googling in search of a detailed description without success. Then I remembered that you had linked it here. Thanks so much!

 

[WillowJ]

You can get the full version here: http://www.co-cure.org/ccpccd.pdf

 

[Enid]

Canadian Consensus -just the very best around I think.

 

[*GG*]

You can get the full version here: http://www.co-cure.org/ccpccd.pdf

Can anyone download this? Because I cannot!

GG

 

[WillowJ]

are you normally able to download pdf files or is it just that one giving you trouble? the link is working fine for me.

if you don't have a pdf reader, you can download Adobe Acrobat for free
http://www.adobe.com/products/reader.html

 

[*GG*]

are you normally able to download pdf files or is it just that one giving you trouble? the link is working fine for me.

if you don't have a pdf reader, you can download Adobe Acrobat for free
http://www.adobe.com/products/reader.html

Yes, when I click the link, the icon of a floppy disk does not show up, so how can I download it?

thanks!

 

[medfeb]

Are you saying that the file isnt opening up at all or when it does, you are not given the chance to save it to your computer? Also, maybe a different link to the CCC would work? There are a few links here - the overview is the CCC
http://www.mefmaction.net/PhysiciansResearchers/Guides/tabid/531/Default.aspx

 

[WillowJ]

Yes, when I click the link, the icon of a floppy disk does not show up, so how can I download it?

thanks!

Yes, you can normally view pdf files? But not that one? I'm sorry, I cannot tell you how to fix that.

You can try one of the links to the truncated CCC. The one you can get from the link on page 1 of this thread will do nicely.

Or use the link medfeb posted--you can get what appears to me to be the entire issue of that journal which contains the complete CCC, the commentary, and some other articles.

 

[*GG*]

Are you saying that the file isnt opening up at all or when it does, you are not given the chance to save it to your computer? Also, maybe a different link to the CCC would work? There are a few links here - the overview is the CCC
http://www.mefmaction.net/PhysiciansResearchers/Guides/tabid/531/Default.aspx

When it does, I am not given a chance to save it to my computer.

GG

PS thanks for the link(s) anyways.

 

[leelaplay]

here's the mefmaction website

They're the Canadian group that organized making this happen, got Health Canada involved, and got the documents published and available to the public and physicians. The links are about 1/2 way down the page.

Both the ME/CFS and FMS articles that were published in Journal of Chronic Fatigue Syndrome and the ME/CFS and FMS Overviews are there. The Overviews are much easier to read. And I think they've gotten them translated into a few languages.

ETA: I think that they may have changed the site so that you can't copy from the Overview. Anyways - I just tried, and I can't, where I used to be able to.

 

[leelaplay]

Oh - I see medfeb provided a link to the mefmaction site. Seems there are a number of different links to the journal article and overview. This page here http://www.mefmaction.net/Patients/Overviews/tabid/122/Default.aspx has the Overviews in 6 languages. This one works best for me.

 

[justinreilly]

The CCC is far and away the definitive document on ME, imo. I give it to every MD i see and strongly recommend everyone do this.