IACFS/ME Primer is now (as of 31 Dec. 2012) on guidelines.gov!

[waiting]

[I am posting this announcement below, in its entirety, from an email list from Denise L-M <speakupaboutme@gmail.com> -- thank you, Denise L-M!]

Hi,
The IACFSME Primer (“Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners”” is available to everyone with Internet access via the National Guideline Clearinghouse* (NGC) website.

NGC is a public resource for evidence-based clinical practice guidelines. As with all material on the NGC site, the IACFSME Primer underwent extensive review to ensure it met the standards for guidelines.gov.

Inclusion of the Primer on the the site is validating and we hope that you share the link (http://www.guidelines.gov/content.aspx?id=38316) far and wide.

“Guideline Summary NGC-9288

Guideline Title

Chronic fatigue syndrome/myalgic encephalomyelitis. A primer for clinical practitioners.

Bibliographic Source(s)

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). Chronic fatiguesyndrome/myalgic encephalomyelitis. A primer for clinical practitioners. Chicago (IL): International Association for ChronicFatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME); 2012. 41 p. [121 references]

Guideline Status

This is the current release of the guideline.

Scope

Disease/Condition(s)

Chronic fatigue syndrome, also known as myalgic encephalomyelitis….”

*NGC is part of the Agency for Healthcare Research and Quality (AHRQ) which is part of the U.S. Department of Health and Human Services (DHHS).

"Speak Up About ME, Invisible No More!" - We're Making This HAPPEN!!!

 

[SOC]

Wow. Just wow. I'm stunned. I wasn't expecting anything this positive this soon from the US gov. I'm excited beyond words that when I go see my new GP, I can refer her to the HHS.gov website for genuinely good info about our illness!

 

[taniaaust1]

I have very mixed feels about this. Thou its great they are going to use the Canadian consensus "CFS" criteria, this has happened way way TOO LATE, should of happened many years ago and one could say its now out of date before it even came in.

Also this will discourage use of the International ME consensus criteria hence why Im not jumping up and down all happy about it. These guidelines quote

The newly published 2011 International Consensus Criteria for ME are not yet in general use

What is the implication of this quote? Does it mean.. the International ME criteria is out (they are out and that is something which cant be hidden) but dont use them as they arent in general use??? That is the way in which many will take that quote.

I'd like to say ..how will the 2011 International Consensus Criteria for ME be made to be in "general use" then? If this document encouraged them.. then it would of been a good document for now..but it doesnt encourage the use of the International ME criteria..

The other thing I really dislike about this iacfs primer.. is that it will keep encouraging "ME patients" to be called "CFS". So just keeps the waters muddied over what CFS and what ME are. That is why there needs to be a push towards the (not out of date) 2011 International Consensus Criteria for ME.

Anyway.. I guess it is a move at least a bit in the right direction but a clear split between ME and CFS would of been far better and this as currently as it is.. just helps to continue muddy the water and confuse those who dont understand the whole ME and CFS thing.

As a ME advocate.. my comment is . use of the Canadian Consensus criteria would of been a good move before but now its far too late! There needs to be use of the 2011 International ME criteria and our ME/CFS orgs should be helping to clear up that confusion between ME and CFS rather then supporting that the CFS name is used for ME patients.

This primer uses the 2003 Canadian clinical case definition for ME/CFS (see worksheet in the original guideline document), because of its emphasis on clearly described core symptoms of the illness. The 1994 Fukuda criteria for CFS (Appendix A in the original guideline document) are primarily used for research purposes, although they may be required for disability determinations in the US and elsewhere.

I too think its a pity that they arent at all discouraging the 1994 Fukuda criteria for CFS from being used for research.. instead this comment supports the Fukuda criteria for research.

 

[Sean]

NGC is part of the Agency for Healthcare Research and Quality (AHRQ) which is part of the U.S. Department of Health and Human Services (DHHS).

The imprimatur of the AHRQ is a major plus for patients dealing with medicos, insurance companies, and welfare agencies.

 

[Firestormm]

Thanks for posting this, Waiting. As I am not a US citizen can I ask if the primer is the effective equivalent to the UK NICE Guideline? It is something that all physicians in the US should be encouraged to follow as a resource to aid understanding and ensure a more coordinated response to treatment? Thanks.

Will now have a read through....

 

[Valentijn]

Amazing progress Regarding the CFS versus ME issue - it's a matter of necessity in the US, as the term "myalgic encephalomyelitis" doesn't really exist there. I think the most important things are the description of the disease and its treatment, and this guide is a giant leap in the right direction.

Hopefully it spreads to other dark corners of the ME/CFS world.

 

[SilverbladeTE]

*CRUNCH!*
what was that I hear? Oh another crack in the psychobabblers wall of BULLSHIT!
yer days are numbered, ya b******ds! Unemployment and the police will coming knocking at yer door, muhaha!
*rubs hands in glee and does a war dance...then keels over*

 

[Firestormm]

Amazing progress

Val, do you happen to know (re my previous question above), what the significance of this appearing in the Government Guidelines site actually is? Do you think it can be regarded as the US NICE Guideline? Thanks.

 

[Valentijn]

Val, do you happen to know (re my previous question above), what the significance of this appearing in the Government Guidelines site actually is? Do you think it can be regarded as the US NICE Guideline? Thanks.

I looked around the site a bit and read about it on Wiki. From what I gather it is somewhat similar to NICE in that a government department (Health and Human Services) have found the guide to meet their standards to publish it in their database. It might have less "power" behind it though, as most doctors in the US are part of private health care ... so whereas I see NICE as the "boss" recommending an approach, having the primer in the US database is more like a highly-respected independent authority/expert recommending it.

Also, from what I can gather from the site, there can be multiple guidelines for the same disease, which medical practitioners can view at the same time to compare. Hence, if a completely contradictory guide met the standards, I think it could also be published in the same database. Though maybe new guides would have to explain why they contradict existing guides, as it looks like they would get rid of things that are no longer good science.

 

[Firestormm]

I looked around the site a bit and read about it on Wiki. From what I gather it is somewhat similar to NICE in that a government department (Health and Human Services) have found the guide to meet their standards to publish it in their database. It might have less "power" behind it though, as most doctors in the US are part of private health care ... so whereas I see NICE as the "boss" recommending an approach, having the primer in the US database is more like a highly-respected independent authority/expert recommending it.

Also, from what I can gather from the site, there can be multiple guidelines for the same disease, which medical practitioners can view at the same time to compare. Hence, if a completely contradictory guide met the standards, I think it could also be published in the same database. Though maybe new guides would have to explain why they contradict existing guides, as it looks like they would get rid of things that are no longer good science.

Thanks Val, that's very kind of you to look it all up. I'd read the disclaimer at the bottom of the page but couldn't figure out it's application. It must be hard to disseminate any central information/advice to a whole mass of private practitioners in countries that have no state healthcare. Hopefully this one will be disseminated effectively and patients in the US will see some reportable benefit.

I need to read through it all again I think...

 

[Valentijn]

Thanks Val, that's very kind of you to look it all up. I'd read the disclaimer at the bottom of the page but couldn't figure out it's application. It must be hard to disseminate any central information/advice to a whole mass of private practitioners in countries that have no state healthcare. Hopefully this one will be disseminated effectively and patients in the US will see some reportable benefit.

Well, things might change somewhat once all the aspects of the Affordable Care Act kick in. To some extent it might become a little more like the British system because taxes are sort of going toward health care. But it's still a very different system, so no idea what the ultimate effect will be regarding government authority.

 

[ahimsa]

[I am posting this announcement below, in its entirety, from an email list from Denise L-M <speakupaboutme@gmail.com> -- thank you, Denise L-M!]
... we hope that you share the link (http://www.guidelines.gov/content.aspx?id=38316) far and wide.

waiting, thank you for forwarding the email from Denise with the link! I do hope that it boosts the credibility of this very helpful document among doctors in the USA.

But I must confess that I'm a bit confused about what it means. I think the web site guidelines.gov is run by the US Dept of Health and Human Services web site (by wandering around on the site) but I'm not 100% sure.

Does this mean that the DHHS supports/endorses these guidelines? Or does it just mean that they think these guidelines are good enough (they passed whatever criteria they have for for inclusion on their site) to be published on the web site but not necessarily endorsed by the DHHS?

I'm not trying to be a killjoy! Just trying to figure out how doctors will react if/when patients bring this document in to an appointment and say they got it at guidelines.gov. Is that something that doctors will recognize as an endorsement?

Thanks to anyone who can add more info.

 

[Valentijn]

Or does it just mean that they think these guidelines are good enough (they passed whatever criteria they have for for inclusion on their site) to be published on the web site but not necessarily endorsed by the DHHS?

That's the impression I got, though it sounds like the criteria for getting included are fairly rigorous.

But it does mean that a doctor, nurse, med student, etc, looking for info on ME/CFS will find something very good if they go to that site to look for it, and that it is a trustworthy site.

 

[ahimsa]

That's the impression I got, though it sounds like the criteria for getting included are fairly rigorous.

But it does mean that a doctor, nurse, med student, etc, looking for info on ME/CFS will find something very good if they go to that site to look for it, and that it is a trustworthy site.

That's what it looks like to me, too. I'll bring it up with my doctors (primary care physician, cardiologist) at my next appointments. I'm curious to see what they think.