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the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

fresh_eyes

happy to be here
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900
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mountains of north carolina
ETA: Dr Yes has written a very lucid summary of this topic, and why we should care - it's so good, I decided to put it at the top of the thread:
(My original first post is in blue, below.)

It has a lot to do with insurance coverage, but also with medical treatment in general, with legal issues and with others revolving around how ME or CFS is seen by various parties. That's where the issue of standard, official classification is all-important. Our doctors and hospitals and insurance companies all use a standardized coding system called the ICD to classify physical diagnoses, procedures, etc.. It's supposed to be created by the WHO but a couple countries (including the US) have been approved to have their own 'modified' versions.

Anyway, when billing your insurance company / Medicare, your doctor gives them a diagnosis that is ICD-coded and they reimburse (or not) accordingly. So far CFS is not officially included as a disease in any version of the ICD (though the upcoming Canadian version, as ME Agenda reported, will). It depends on the version, but in the current US version it's only listed as a group of symptoms and abnormal but unclear clinical findings; so far the plan is that it will remain there in the next version but will ALSO be specifically excluded from the ME/ post-viral fatigue syndrome category. A specific exclusion like that would be a problem; the only way you could then be diagnosed with something officially recognized as a disease would be if you 'qualify' for their definitions of ME or PVFS (a very unclearly defined term; how will they determine whether something is "post-viral"? Can it be based on the patient's account of symptoms or do we have to have blood tests to prove it? Will IgG titers be considered diagnostic? etcetera...)

That doesn't mean you won't get health coverage for a CFS diagnosis, but it may become more difficult over time (it's hard enough now!). So it would be much better if you could get diagnosed with ME or PVFS, if those are put in the next version as has so far been planned...OR we could push to have CFS included with ME and PVFS (coded G93.3 in the "neurological diseases" category), as in the new Canadian version.

The APA issue is potentially more troubling the way things stand now. The DSM is their coding manual/ system for psychological diseases, and in the US is usually used instead of the ICD coding. In other countries it is often used as an adjunct to the ICD coding. The APA and the WHO have been working together now to try to meld their psychological classifications so that every country is using the same codes (they call this "harmonization").

Trouble is, the APA's current board in charge of developing the DSM is not a good bunch, and among them are those who want to blur the distinction between physical and psychiatric disease such that just about any medical condition can be said to have a psychiatric component if a doctor wants to.

Sounds crazy, and as ME agenda says we don't know if they'll put that in the DSM or not, but they have proposed it. If they succeed (which would create problems in 'harmonizing' with the WHO, I would think), then it would open the door to tons more CBT and antidepressants being prescribed for people with totally physical diseases. It would also make it even HARDER for all of us to fight the "psychosomatic" label, especially if CFS is not firmly recognized as a physical disease in the American ICD version, yet is still used nationwide by doctors as the name for our diagnosis (instead of ME or PVFS).

So, perhaps sometime in January we will see their first draft of the DSM. Two things we don't want in it: (1) the melding of potentially psychosomatic disease with physical ones, as mentioned above, and (2) the inclusion of CFS in the DSM in any way shape or form. (So far not proposed, but this bunch of psychiatrists, and quite a few others, clearly would like that...which of course would be a disaster if it happened outright, but it could also be cleverly insinuated, so we have to watch their definitions of "medically unexplained illnesses" and "functional somatic syndromes").


Hi folks. Disclaimer fist: this thread is aimed primarily at Americans, though of course everyone is welcome, and please forgive my radical simplification of this complex topic.

The American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses, which for our purposes means they may want to have ME/CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders, and/or make it easier to add a functional somatic diagnosis along with any physical disease (OK, OK, you're physically ill - but you're also mentally ill.). Uh-oh.

To my mind, this seems like a step in the direction we've been fearing, that the psych lobby is trying to reinforce their position in the face of the XMRV finding (and other findings that point to biological disease).

There are activists keeping an eye on this for the UK, but there are important differences between the UK and US situations. Does anybody know if there is already US advocacy being done focused on this topic? Has the CAA, for example, issued any statements on this? I'd appreciate anybody pointing me toward any work already being done on this. Time is short.
 

dipic

Senior Member
Messages
215
We've learned from the tireless MEAgenda that the American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses, which for our purposes means they want to have CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders.

WTF, seriously!?
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
@ dipic - I know, right? While this kind of thing is apparently (and shockingly) par for the course in the UK, I wasn't aware of it until I got on this forum.

Got the info from this post:

http://www.forums.aboutmecfs.org/showpost.php?p=26135&postcount=10

The press release from the APA is here, as a pdf:

http://www.psych.org/MainMenu/Newsroom.aspx

MEAgenda, who specializes in the UK, suggested that we take the US issue to its own thread. If anyone knows any more than I do about all this, please chime in!
 

Michael Dessin

Senior Member
Messages
608
Location
Ohio
Disturbing

I don't know much about this, going to do more research.

If this is the case, it's total bullshit and I'm fed up.

I will write a 100 letters to both organizations, show up at there front door if I have too. If the WHO makes reform to the definition of ME, implying a psychiatric premise of this disease, it will be a absolute disgrace.

Mike
 
S

starcycle

Guest
It's almost amusing. If someone walked into a doctor's office and said they were "hearing voices," the doc would say "psychotic, auditory hallucinations," etc. But walk in and say you are fatigued beyond belief, and you are: somatizing, hysterical, malingering, etc.

So think about it: they take the word of the person who by their own admission is psychotic, but they don't take the word of the person who is not psychotic!

Bizarre.

I asked one of these a-hole doctors once who was giving me a hard time, "oh btw - what's the lab test for schizophrenia again? What's the lab test for depression?"

Oh, right - there isn't one. And yet those disorders are "real." :rolleyes:

I asked him how he knew all the people who the doctors thought had schizophrenia weren't really just malingering to be able to collect disability. He said it was obvious from their symptoms what they had. I just left it there - sometimes you know it's just no use to argue with some of these idiots. :p
 

Michael Dessin

Senior Member
Messages
608
Location
Ohio
Yes

Good points...Also too, do they ever bother to consider the cause of the schizophrenia, many cases are chemical poisoning such as mercury, which can be resolved, they don't give a shit!
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Starcycle - That is exactly the point I was making to my husband last night. Exactly the same thought.

If go in and tell the doctor Moses is talking to me, I will be taken 100% seriously and given the appropriate help. Yet there is absolutely no test for those voices, no test for biblical personages, demons or little green men from Mars. They would simply take us at our word.

And this attitude extends to physical problems. My husband had a colleague with back pain. No tests ever showed anything wrong with him, but he got sympathy, months off work and sick pay, once again based on nothing but his word.
 
S

starcycle

Guest
Starcycle - That is exactly the point I was making to my husband last night. Exactly the same thought.

If go in and tell the doctor Moses is talking to me, I will be taken 100% seriously and given the appropriate help. Yet there is absolutely no test for those voices, no test for biblical personages, demons or little green men from Mars. They would simply take us at our word.

And this attitude extends to physical problems. My husband had a colleague with back pain. No tests ever showed anything wrong with him, but he got sympathy, months off work and sick pay, once again based on nothing but his word.

Lol - right, back pain is another one. And guess what? In a good number of those cases, back pain actually *IS* psychogenic!

rofl, I can't take it. They get everything totally backward. :D (no pun intended :p)
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
@ Mike - Thanks for your interest. Do let us know what you find out.

@ everyone - I know, it's so absurd it seems laughable - until I realize that in the UK people are actually being forcibly committed to psych hospitals on the basis of believing they are physically ill. How can this be??? What is this, the middle ages? Argh.

Here's the very thorough post from MEAgenda:

http://meagenda.wordpress.com/2009/...oom-series-four-dsm-v-what-do-we-know-so-far/

I wish my mushy brain could truly make sense of all this, but so far I've only got the gist. Any and all input most welcome. It looks like the comment period on these proposed revisions begins in January and lasts for 2 months.
 

Lisette

Frida For All
Messages
31
Location
Seattle, WA
Let's not join the contemptuous

I know that many people with other chronic issues-- especially chronic pain issues that are not found on x-ray or MRIs-- have had some of the same humiliating and unjust experiences that we have had with CFS. I'm one of those people.:(

We think that if we had a "legitimate" disease that we would be treated more fairly. Perhaps.

But I have seen people treat my friend with MS with just as much suspicion that perhaps he could avoid his symptoms altogether if he were to change his diet and exercise regularly. People don't say it this bluntly, but it does get communicated.

Another friend has asthma, and people get irritated that she can't tolerate rooms full of tobacco smoke, perfumes or cat dander. I have seen people roll their eyes when she says she has to go outside, as if she were exaggerating for attention. She has nearly died twice!

We should be united as fellow human beings, not just as patients of one specific disease. Anyone being treated unfairly causes harm to all of us.

We might envious when we see how wide-spread the awareness of AIDS or breast cancer is-- but we would be grateful if someone we loved contracted these diseases.

I know that what happens to us is horribly wrong, but the blame does not lie with other patients. They didn't ask for their problems, either.

Sorry to sound preachy. I have had my own bouts of envy toward other groups. It always ends up making me feel more alone and helpless, and I don't want any of us to feel any more worse than we already do.

I know about the Wessley school, and I am also horrified by all the ground that they have gained. It is truly an insult and a life-altering detriment to all patients everywhere who need treatment, and not analysis.
 
S

starcycle

Guest
I know that many people with other chronic issues-- especially chronic pain issues that are not found on x-ray or MRIs-- have had some of the same humiliating and unjust experiences that we have had with CFS. I'm one of those people.:(

We think that if we had a "legitimate" disease that we would be treated more fairly. Perhaps.

But I have seen people treat my friend with MS with just as much suspicion that perhaps he could avoid his symptoms altogether if he were to change his diet and exercise regularly. People don't say it this bluntly, but it does get communicated.

Another friend has asthma, and people get irritated that she can't tolerate rooms full of tobacco smoke, perfumes or cat dander. I have seen people roll their eyes when she says she has to go outside, as if she were exaggerating for attention. She has nearly died twice!

We should be united as fellow human beings, not just as patients of one specific disease. Anyone being treated unfairly causes harm to all of us.

We might envious when we see how wide-spread the awareness of AIDS or breast cancer is-- but we would be grateful if someone we loved contracted these diseases.

I know that what happens to us is horribly wrong, but the blame does not lie with other patients. They didn't ask for their problems, either.

Sorry to sound preachy. I have had my own bouts of envy toward other groups. It always ends up making me feel more alone and helpless, and I don't want any of us to feel any more worse than we already do.

I know about the Wessley school, and I am also horrified by all the ground that they have gained. It is truly an insult and a life-altering detriment to all patients everywhere who need treatment, and not analysis.

I think we were talking more about the doctors and the illogical and inconsistent attitudes they have than trying to malign anybody who is sick. Having multiple chemical sensitivities and asthma to smoke, perfume, gas and diesel fuels, new clothes, etc. I can completely empathize with anyone with that condition. As for back pain that's psychogenic, that's just as painful and debilitating as pain from actual physical causes, if not more. But that doesn't mean it's not psychogenic. ;)

Again, the point is the doctors who will accept certain things on the face of it with no diagnostic tests or objective criteria whatsoever, but who won't do the same for people with CFS (even though ironically there are multiple objectively measurable abnormalities that could be found), or MCS, or basically anything they have made up their mind in advance is not "real." It's about their irrationality, bias and brainwashing, not about the people who are ill. ;)
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
how do we know this

As for back pain that's psychogenic, that's just as painful and debilitating as pain from actual physical causes, if not more. But that doesn't mean it's not psychogenic. ;)

I think we need to be careful here. How do we know that just because the cause of this back pain has not been measured by conventional means that it's psychogenic? I think the same thing is happening to some chronic pain issues as to CFS. I would hesitate to make a statement such as this.
 
S

starcycle

Guest
I think we need to be careful here. How do we know that just because the cause of this back pain has not been measured by conventional means that it's psychogenic? I think the same thing is happening to some chronic pain issues as to CFS. I would hesitate to make a statement such as this.

No, it's just a fact that some back pain is psychogenic, just like it's a fact that there are disorders like phantom limb pain. That doesn't mean it's not real, and it doesn't minimize the pain or the debility.

But again, it's about the attitudes of the medical establishment in accepting that particular things like back pain or schizophrenia are "real" without any objective measures, and not other things (that they have been indoctrinated against accepting) even with objective measures.
 

Dr. Yes

Shame on You
Messages
868
For those who were as Confused as I was...

Hey all (and getting back to the subject of THIS thread, folks!),

Here's the clearest explanation I've found about the ICD codes in the US vs. UK and the status of CFS and ME in each; it's called "The WHO ICD in relation to M.E. and ‘CFS’ – Short version" from the Hummingbirds' Foundation for ME:
http://www.hfme.org/PDF/WHO_ICD_ME_and_CFS_Short.pdf

It's important to see how the WHO treats ME (and what they call Post-Viral Fatigue Syndrome) differently from CFS. CFS isn't even listed in ICD-10 (the version everyone except the US uses), except in the index, which refers you to ME and PVFS but doesn't make clear what the relationship is.

Unfortunately the US is still using ICD-9-CM, its own version of the older ICD-9; which doesn't clearly recognize ME or PVFS either, and classifies CFS as a vague set of symptoms, NOT as a disease per se.

The proposed version for the US, ICD-10-CM, is supposed to finally recognize ME and PVFS as neurological diseases, but specifically EXCLUDES CFS from that category and still leaves the term "CFS" as a poorly defined symptomology rather than a specific disease. (They're probably right about that... but that means according to the WHO most of us should be diagnosed with ME or PVFS!)

The problem is that the CDC specifically rejects ME as an alternate term for CFS, and states that THEY ARE NOT THE SAME DISEASE. (I don't know how the CDC defines "ME"; does it even have a definition for it? Does anyone know?) Also, as we all know, few if any doctors, and no insurers I know of, will give or accept the diagnosis of ME. All of us get thrown into the CFS bag, which is not defined as a disease by the WHO, and in fact will be explicitly excluded from the grouping of ME and PVFS in the upcoming ICD-10-CM. All this is no doubt the result of the CDC et al "modifying" the WHO definition to match their's.

A quote from the pdf link I gave above:
"Unlike ICD-10, the US versions of the ICD are quite clear about the relationship between ‘CFS’ and M.E.: there is none. Amy Blum, Medical Classification Specialist at the National Center for Health Statistics has stated:

‘ME is not considered a synonymous term for chronic fatigue syndrome in the United States.’

Ms. Blum has also made the following illuminating statement:

‘...it is not clinically valid to classify all cases of CFS to code G93.3. The default will be R53.82 except in
those cases where the cause is determined to be of viral origin.’
([personal] email..9 July 2009)"

And now we have the revelation (to us folks, anyway) that the APA wants the WHO to 'harmonize' its upcoming ICD-11 (the version the UK, etc will be using; we backwards yanks will be using a different version called ICD-10-CM) with the DSM, which could apparently lead to CFS being defined as a somatoform disorder for the first time. I don't know it that will happen to ME too, but even if it didn't, that wouldn't help us in the US since none of our docs or insurance carriers know what ME is!

Just when I was thinking the XMRV finding would make things better for us...

One more thing from the link above:
The WHO and the APA are collaborating on the revision process for ICD-11 and DSM-V to ensure consistency where possible, and in particular to achieve ‘harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.’

There is concern among many people in the M.E. and ‘CFS’ communities that the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11.

The revision of ICD-10 is currently advised by ‘Topic Advisory Groups’ (TAGs). The TAG for Mental Health is working on mental disorders, and the TAG for Neurology is ‘in formation.’

Given the amount of psychiatric attention being brought to bear in the revision process from the DSM side, it is crucial that neurological expertise from the ICD side should be focussed on the diseases at G93.3. The Topic Advisory Group for Neurology may have an important role to play.

I think they need a "TAG" for more than just neurology dealing with our disease, otherwise it would be difficult to counter the TAG for Mental Health.

I would guess that, besides focusing on the WHO, we here in the US need to bring pressure to bear on the APA on this issue.. MEAgenda's great posts include links to an article and an interview by Christopher Lane, who reports that there is already a "civil war" going on in the APA over the increasing ludicrousness of the DSM definitions of psychological disease. I also see a potential link here with Levi's proposed legislation (on its own thread) to prevent psychologization of unexplained medical illnesses...
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I beg to differ

No, it's just a fact that some back pain is psychogenic, just like it's a fact that there are disorders like phantom limb pain. That doesn't mean it's not real, and it doesn't minimize the pain or the debility.

I realize we're getting off-topic here and I hate to belabor this point, but I think this is important. I think you are falling into the same trap that the doctor's we criticize fall into — that a physical problem that is not easily supported by conventional tests in psychological.

psychogenic |ˌsīkōˈjenik|: having a psychological origin or cause rather than a physical one.

Phantom limb pain is not psychogenic. It is now believed to be a problem in the brain (rather than the mind). By understanding the underlying mechanism of this pain, appropriate treatment can occur.

From Wikipedia: In the early 1990s, Tim Pons, at the National Institutes of Health (NIH), showed that the brain can reorganize if sensory input is cut off (Pons et al. 1991). Hearing about these results,V. S. Ramachandran realized that phantom limb sensations could be due to "crosswiring" in the somatosensory cortex, which is located in the postcentral gyrus (Ramachandran & Blakeslee 1998; Ramachandran & Hirstein 1998), and which receives input from the limbs and body. Input from the left side of the body goes to the right hemisphere and vice versa. The input from extremities comes into the somatosensory cortex in an ordered way, the representation of which is referred to as the somatosensory homonculus. Input from the hand is located next to the input from the arm, input from the foot is located next to input from the hand, and so on. One oddity is input from the face is located next to input from the hand.

Ramachandran reasoned that if someone were to lose their right hand in an accident, they may then have the feelings of a phantom limb because the input that normally would go from their hand to the left somatosensory cortex would be stopped. The areas in the somatosensory cortex that are near to the ones of the hand (the arm and face) will take over (or "remap") this cortical region that no longer has input. Ramachandran and colleagues first demonstrated this remapping by showing that stroking different parts of the face led to perceptions of being touched on different parts of the missing limb (Ramachandran, Rogers-Ramachandran & Stewart 1992). Through magnetoencephalography (MEG), which permits visualization of activity in the human brain (Yang et al. 1994), Ramachandran verified the reorganization in the somatosensory cortex.

One particularly novel treatment for phantom limb pain is the mirror box developed by Vilayanur Ramachandran and colleagues (Ramachandran, Rogers-Ramachandran & Cobb 1995). Through the use of artificial visual feedback it becomes possible for the patient to "move" the phantom limb, and to unclench it from potentially painful positions. Repeated training in some subjects has led to long-term improvement, and in one exceptional case, even to the complete elimination of the phantom limb between the hand and the shoulder (so that the phantom hand was dangling from the shoulder).

---------------
ETA:
From Dr. Yes: Hey all (and getting back to the subject of THIS thread, folks!)

My apologies, Dr. Yes (and everybody else). I was writing this when you added your post.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
ME is not CFS

From Dr. Yes: The problem is that the CDC specifically rejects ME as an alternate term for CFS, and states that THEY ARE NOT THE SAME DISEASE. (I don't know how the CDC defines "ME"; does it even have a definition for it? Does anyone know?)

Here's a quote I found.

From the CDC: Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

When I searched the CDC site using "what is myalgic encephalomyelitis" (in quotes) it took me directly to their study "Surveillance for Chronic Fatigue Syndrome—Four U.S. Cities." I could find no mention of "myalgic encephalomyelitis" in that study.
 

Dr. Yes

Shame on You
Messages
868
Hi gracenote :),

Yeah I saw that on the CDC site too. Thanks for posting the quote; that's what I was actually referring to. As you can see, they don't recognize CFIDS as a valid name (so what do they think of the CFIDS Association of America's name?) and refer to a separate "case definition" for ME, but I couldn't find one on their site. I have a feeling they don't have one, based on their previous (80's) commentaries favoring the name change to CFS. But at that time, if you read Holmes' own reasoning, they weren't saying that the two diseases were distinct, they just wanted to give "ME" a "more accurate" name, since they didn't see evidence of "encephalomyelitis" in their evaluation of the outbreak victims. (Of course, we all know how thorough that 'evaluation' was...)

Over the years they've further separated the two and marginalized the history of ME so that they can now (unscientifically) claim the two are different diseases. The business about ME requiring "neurological" and "muscular" signs --- we all know CFS has neurological signs (what the hell do they think orthostatic intolerance/ NMH are?)... and since when did "sign" become a proper medical term? Did they mean symptom? ME has the same muscular "signs" or "symptoms" that have been described over and over in "CFS".

Given all the issues we're facing, including this WHO thing, the DSM nonsense, psychologizing of a physical disease... I'm really starting to think that we should advocate for the reinstatement of ME as the correct term for CFS. The rest of the world uses it, and the WHO has listed it as a neurological disease for decades, which gives us leverage (and which is why the UK psych lobby has been trying so hard to get the WHO to drop ME altogether). The CDC opened the door for all of these problems with the invention of "CFS", and maybe the only way to fix things is to get rid of CFS entirely (not even settling for "ME/CFS").
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
gracenote quoted the CDC: "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

Great. So if you happen to live in the U.S. and you have CFIDS then you will be labeled with CFS which no doctor or nurse or any other medical professional should ever consider being the same as Myalgic Encephalomyelitis but instead should encourage you to exercise and get mind treatments. Clearly, we're all just a bunch of malingering idiots who have nothing really wrong with us. We're just tired.

Does this make you angry? :mad:

Where is the CAA???!! They're supposed to be our patient organization!
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
here's the article

On Being Sane in Insane Places

Science, Vol. 179 (Jan. 1973), 250-258.

It is clear that we cannot distinguish the sane from the insane in psychiatric hospitals. The hospital itself imposes a special environment in which the meaning of behavior can easily be misunderstood. The consequences to patients hospitalized in such an environment – the powerlessness, depersonalization, segregation, mortification, and self-labeling – seem undoubtedly counter-therapeutic.
 

Stuart

Senior Member
Messages
154
The Effect of CMEs, Toolkit, and Literature heavily citing CBT/GET

Dang gracenote, you're just too quick! I was opening my copy of the CMEs and Toolkit to find just the paragraph you quoted.

But you are missing something important - all three CMEs and the Toolkit had CAA members involved, each with Kim McCleary.

All include CBT and GET or Exercise Therapy as a major feature of each CME or Toolkit so you wonder why doctors think the way they do? You can find many examples in the CAA literature as well were you will find the smiling faces of Peter White and William Reeves in a prominent sidebar column:

http://www.cfids.org/sparkcfs/2008/toolkit4.pdf
http://www.cfids.org/sparkcfs/clinical.pdf
http://www.cfids.org/resources/CBTFactSheet.asp

http://www.cdc.gov/cfs/toolkit.htm

CFS: A Primer for Allied Health Professionals, Course WB3151 http://origin.cdc.gov/cfs/cme/wb3151/
The following individuals are considered content experts for this activity:
James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
Kimbery McCleary, BA, CEO, CFIDS Association of America
William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)
The CME supports the Reeves Empirical Definition
The International Working Group Case Definition of CFS (Fukuda et al., 1994) and clarifications published in 2003 (Reeves et al.) provide the current international standard for diagnosis of CFS in research studies and provide appropriate guidelines for clinical diagnosis. CDC has developed an empirical case definition that addresses diagnostic and assessment needs in both the research and clinical arenas (Reeves et al., 2005).
The Assessment Tools use the Reeves Empirical Definition
Use of this battery of tests follows the recommendations of the CDCs empirical approach to CFS definition (Reeves et al., 2005). Appendix A (PDF 149 KB) includes additional information on these assessment tools.
Remember there are no tests or physical signs!
CFS has no characteristic physical signs or diagnostic laboratory abnormalities.:confused:
Anything that IS physical is definitely NOT CFS!
CFS patients may report many other symptoms that are not part of the syndrome, such as allergies or sinus problems; numbness or tingling; feeling in a fog; dizziness and balance problems; sensitivity to substances and stimuli; and night sweats (Nisenbaum et al., 2004). Health care professionals should investigate the possibility of underlying medical and psychiatric disorders in those patients who report numerous symptoms not strictly associated with CFS and should remain alert to the development of new symptoms that require further evaluation.
(If you look at the Katrina Berne Symptom Checklist you will see these other symptoms ARE part of CFS/ME http://www.wpinstitute.org/patient/docs/c1-berne.pdf and if I recall correctly may be in the Canadian Definition http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf).

The following is not implying a psychiatric basis for CFS?
Depressive disorders frequently complicate care of patients with CFS. Twenty-five percent of CFS patients suffer a major depressive disorder, and 50% to 75% have experienced a depressive episode during their lifetime (Afari and Buchwald, 2003). In comparison, 10% of American adults have a major depressive episode each year, and 17% have had at least one lifetime episode (Kessler et al., 1994).
Course Two, WB1032, CFS: Diagnosis and Management http://www.cdc.gov/cfs/cme/wb1032/introduction.html
This course was authored, reviewed and/or edited by the following individuals:
James Jones, MD, CDC/NCID
Teresa Lupton, RN, BSS, CFIDS Association of America
K. Kimberly McCleary, BA, CEO, CFIDS Association of America
William Reeves, MD, CDC/NCID
Vicki Walker, BA, Graduate Certificate in Public Health Issues, formerly of the CFIDS Association of America
As well as the Medscape CME - Chronic Fatigue Syndrome: From Diagnosis to Management http://cme.medscape.com/viewprogram/17442
Marcia Harmon; Lucinda Bateman, MD; Charles Lapp, MD; K. Kimberly McCleary
As late as 2008 CAA was citing CBT research from Wessely: http://www.cfids.org/cfidslink/2008/110702.asp
One theory about the cause of this hypocortisolism is that it occurs well into the course of CFS due to factors such as inactivity, sleep disturbance, chronic stress and deconditioning. In this study, published in the Journal of Affective Disorders, researchers set out to determine if (CBT) therapy aimed at reversing those factors would result in increased cortisol output in CFS patients.
Roberts A, Papadopoulos A, Wessely S, Chaldera T, Cleare A. Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome. Journal of Affective Disorders 2008
The studies cited in these CMEs and Toolkit come from the mainstream CDC friendly crowd, they do not include the many research papers which discredit them or show clear physiological findings which would fly in the face of CFS has no characteristic physical signs or diagnostic laboratory abnormalities.

I am tired of the where oh where did the CAA support the Reeves Empirical Definition, or that they didnt give much credence to CBT, it just is not true.

That said, there was a turn in the CAA since 2008, the problem the past is still present and these materials were renewed this August and dont expire until August 8, 2012. No more straddling the fence!:mad: I would really like to see new CMEs, Toolkit, and glossy slicks (or PDF), that is citing the other research that the CDC likes to avoid; you know the physiological kind, with tests and physical symptoms. :cool: