CAA article on ME/CFS in Pain Practitioner Apr 2010

[leelaplay]

The Chronic Fatigue Syndrome article from the spring issue of Pain Practitioner, VOLUME 2 0 , NUMBER 1 | 15, read by 6,000 medical professionals treating patients with pain, is now available at

http://www.cfids.org/about-cfids/pain-practitioner-spring2010.pdf.

Suzanne Vernon, PhD and Kim McCleary wrote the article that includes an overview of CFS and a summary of past and current research.

Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), is a debilitating illness with no known cause, diagnostic test, or universally effective treatment, in spite of 25 years of research and more than 5,000 studies in the peer-reviewed literature. This article is an overview of the signs and symptoms of CFS, solid research findings, and new directions being pursued by scientists in the United States and abroad.

[if: See what you think. I'm still not up to reading, but after a quick scan it looked pretty good, but look forward to those who can read these days filling me in + I didn't know about the last 2 research projects mentioned at the end. ]

 

[CBS]

Just read the article. I have two issues: 1) I think we need to get away from the repeated characterization of CFS as a difficult diagnosis. Jason's CAA webinar today gave a clear picture of the sensitivity and specificity of the Canadian Consensus Dx criteria; AND 2) the first point combined with the statement that "CFS is not a form of depression, and many patients with CFS have no diagnosable psychiatric disorder." troubles me.

What is read into the phrase "many patients with CFS have no diagnosable psychiatric disorder"? Maybe only 85% have diagnosable psychiatric disorders? I know it wasn't intended this way but it feels a bit like damning with faint praise.

Why not - psychiatric disorders do not occur in the CFS population at any higher rate than the general public.

Or better yet, why not simply leave it at "CFS is not a form of depression."

No one says that "MS is not a form of depression, and many patients with MS have no diagnosable
psychiatric disorder." AAAAAAAGGGGGGHHHHHH!

I know this was only one sentence in an otherwise decent article but WHY must our own advocacy people go "there?"

I seriously doubt that we could find a single person in this forum that would have let that sentence stand.

Jennie, if you're reading this I am officially volunteering to proof read anything and everything you send my way.

ETA: I realize that this appears to come from a list compiled by Komaroff but it still stands out and I just wonder why it was needed. It was a mistake for Komaroff to go there.

 

[Kati]

I would trust CBS as our official proofreader.

 

[jewel]

Islandfinn-- Thanks for posting. CBS--Agreed!

 

[justinreilly]

Going in the Right Direction

I find myself in the curious position of posting a less critical review than CBS. Maybe there is some hope for me yet, Cort.

This strikes me as a significant improvement over the overview articles that have come out of CAA in the past. In fact, the two major suggestions I have for improvement aren't to do with finding fault with anything Ms. McCleary or Dr. Vernon wrote about ME.

One is Dr. Komoroff's quote as addressed by CBS, with whom I totally agree. (Second is the throwaway remark that if I were a reader of a pain journal, I would have appreciated a specialized discussion of pain treatment in ME, which is basically a stylistic point and not something I care about as a patient at this time.)

I could address a few other points that I believe are problematic, but I think we have already discussed them in reference to other docs on the Time for the Big Talk, How is CAA Doing? thread. Instead, I find it a relief to just end with a congratulations to CAA for what I think is good progress. It almost seems they were listening to us and incorporating suggestions! Am I delusional? :Retro smile:

 

[CBS]

I find myself in the curious position of posting a less critical review than CBS. Maybe there is some hope for me yet, Cort.

This strikes me as a significant improvement over the overview articles that have come out of CAA in the past. In fact, the two major suggestions I have for improvement aren't to do with finding fault with anything Ms. McCleary or Dr. Vernon wrote about ME.

One is Dr. Komoroff's quote as addressed by CBS, with whom I totally agree. (Second is the throwaway remark that if I were a reader of a pain journal, I would have appreciated a specialized discussion of pain treatment in ME, which is basically a stylistic point and not something I care about as a patient at this time.)

I could address a few other points that I believe are problematic, but I think we have already discussed them in reference to other docs on the Time for the Big Talk, How is CAA Doing? thread. Instead, I find it a relief to just end with a congratulations to CAA for what I think is good progress. It almost seems they were listening to us and incorporating suggestions! Am I delusional? :Retro smile:

Justin,

You just made my night.

Thanks,

Shane

 

[txfriend]

I thought this a fairly good article, for a change. I was surprised to see the
CFIDS part mentioned, as they had abandoned that phrase for a long time;
I have repeatedly challenged them on this point. So, all in all, I feel the
article went a ways towards enlightening a group of people who may not
realize how much pain PWCs endure on a daily basis. I'm not going to
be too picky about the psychological wording of Komaroff; I believe the
intention was good, but the sentence should have been worded more
generously towards the definitive statement that PWCs have no more
psychiatric illness than the general public. Maybe they'll change that.

My GI dr., when asked, said he 'never heard of leaky gut', so I was
glad to see that this may be researched further and verified and validated.
The Drs Lights, of course, are doing important work on the muscle
physiology and function, and should bring "light" to that subject at last.

All in all, I find I have less criticism of this article than most I have read
from the CAA. Maybe they are paying attention....HOPE

 

[usedtobeperkytina]

I don't know that this statement is backed by research:

Why not - psychiatric disorders do not occur in the CFS population at any higher rate than the general public.

I think the truth is that CFS patients experience no higher incidence of psychiatric disorders, including depression, than patients suffering with other chronic disabling diseases, such as multiple sclerosis.

We have been saying that CFS patients have higher incidence of suicide. It has been noted that the debilitating losses and frustrations, including poor medical care, can lead to depression in CFs patients.

So these claims need to jive.

Tina

 

[dannybex]

Why not - psychiatric disorders do not occur in the CFS population at any higher rate than the general public.

Or better yet, why not simply leave it at "CFS is not a form of depression."

Spot on CBS and Tina...

 

[Gerwyn]

The “Chronic Fatigue Syndrome” article from the spring issue of Pain Practitioner, VOLUME 2 0 , NUMBER 1 | 15, read by 6,000 medical professionals treating patients with pain, is now available at

http://www.cfids.org/about-cfids/pain-practitioner-spring2010.pdf.

Suzanne Vernon, PhD and Kim McCleary wrote the article that includes an overview of CFS and a summary of past and current research.

They dont mention any characteristic neuroimmune endocrine symptoms at all. I am very dissapointed with that .perhaps they do hold the view that ME and CFS are seperate illnesses as the CME publication suggests?

 

[gracenote]

They dont mention any characteristic neuroimmune endocrine symptoms at all.i think that is disgraceful

Gerwyn,

What do you think of the "Major Research Findings" section written by Komaroff?

Also, does anyone know how to access this article in a form that is not PDF?