CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

[SOC]

Here is the full paragraph from the CDC on definitions:

If I were at the CFIDS Association of America, I'd consider this a frontal assault on the organization.

So according to the CDC, you are either CFS or ME but they know nothing of ME.

The CAA and the IACFS/ME have to come forward on this issue.

Agreed. If the CAA and IACFS/ME don't address this, how are we, as patients, supposed to fight it?

It's still not clear to me how the CDC expects me (or my doctor) to distinguish between these two supposedly distinct conditions. To which "neurological and muscular signs" exactly are they referring?

When I reviewed the case definition linked above, I noticed this. which I hadn't noticed before:

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

[my bolding]

So if we have CFS we have a psychiatric disorder, but if we report "numerous symptoms not strictly related to CFS", say oh, perhaps "neurological and muscular signs", then our doctors should investigate the possibility of psychiatric disorders? Sounds like a catch-22 to me.

 

[CBS]

http://www.cdc.gov/cfs/education/wb1032/chapter3-2.html

Chapter 3.2: Prognosis

Average completion time for Chapter 3 is 10 minutes.
Very few studies have attempted to follow the long-term course of CFS in defined populations outside of specialty referral clinics. A relapsing-remitting pattern and changes in symptoms, and their individual severity, is common (Nisenbaum et al., 2003). There is great individual variation in the course of illness, ranging from worsening symptoms to substantial recovery (Reyes et al., 1997) and many people experience improved function over time, allowing them to increase their work or other activities even though they continue to experience symptoms. Most data on prognosis comes from tertiary or specialty care centers, which generally see the sickest patients, and there is some suggestion that CFS patients cared for by primary care professionals have a better prognosis (Joyce, Hotopf and Wessely, 1997). Clinical research suggests that younger age at onset, shorter duration of illness, milder fatigue and absence of comorbid psychiatric illnesses lead to better prognosis (Afari and Buchwald, 2003; Joyce et al., 1997). Clinical experience suggesting that earlier diagnosis leads to better outcomes awaits formal testing (Nisenbaum et al., 2003). However, improvement is possible in any individual patient at any point in the course of the illness. More study is needed to understand predictors for recovery.

Oh really... This is quite a bold statement that clearly "implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature." And what might the CDC suggest? Perhaps a course or two of CBT or GET?

 

[SOC]

Most data on prognosis comes from tertiary or specialty care centers, which generally see the sickest patients, and there is some suggestion that CFS patients cared for by primary care professionals have a better prognosis (Joyce, Hotopf and Wessely, 1997).

I ask forgiveness for my brain fogginess upfront, because the answer to this may be obvious....

"CFS patients cared for by PCPs have a better prognosis" than whom? Those in the care of specialty care centers?

 

[SOC]

http://www.cdc.gov/cfs/education/wb1032/chapter3-2.html

Oh really... This is quite a bold statement that clearly "implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature." And what might the CDC suggest? Perhaps a course or two of CBT or GET?

<< However, improvement is possible in any individual patient at any point in the course of the illness.>>

Yes, quite bold since they couldn't even find a reference (even from Wessely) for this statement.

 

[leelaplay]

This might be directly related enough. Frances, ex DSM -IV chair, therefore a good person to quote against the shadow of Reeves, says that psych are over-diagnosing

from medpage: There's a noteworthy column in Psychiatric Times, "Normality Is an Endangered Species: Psychiatric Fads and Overdiagnosis," by Allen Frances, MD. He was chair of the task force that worked on the Diagnostic & Statistical Manual -- DSM-IV -- one edition of the "bible of psychiatry." He is professor emeritus of psychiatry at Duke University School of Medicine.

from Frances:

Fads punctuate what has become a basic background of overdiagnosis. Normality is an endangered species. The NIMH estimates that, in any given year, 25 percent of the population (thats almost 60 million people) has a diagnosable mental disorder. A prospective study found that, by age thirty-two, 50 percent of the general population had qualified for an anxiety disorder, 40 percent for depression, and 30 percent for alcohol abuse or dependence. Imagine what the rates will be like by the time these people hit fifty, or sixty-five, or eighty. In this brave new world of psychiatric overdiagnosis, will anyone get through life without a mental disorder?

The "epidemics" in psychiatry are caused by changing diagnostic fashions -- the people don't change, the labels do. There are no objective tests in psychiatry -- no X-ray, laboratory, or exam that says definitively that someone does or does not have a mental disorder. What is diagnosed as mental disorder is very sensitive to professional and social contextual forces. Rates of disorder rise easily because mental disorder has such fluid boundaries with normality.

and there are some interesting comments on the medpage blog

 

[taniaaust1]

Am I the only one flabbergasted by the CDC's position here?

I've known the CDCs stance on all this for many years. Its thou been impossible and very frustrating to get those with ME to actually listen about the game the CDC is playing with the ME patient community, they play games and successfully manage to mess with most peoples heads. This bothers me soo much as they take those who are struggling to think.. and do this!!

CDC will never take responsibility for anything bad which happens to the ME patients for after all.. they WILL say it isnt their fault if someone has been incorrectly diagnosed with CFS rather than ME.

(and i think England health system and government or whatever (wessely??) further help confuse the issue by making CFS into ME over in England. By doing that.. it makes those who do have actual ME in America.. think even more that they have CFS as after all those who have ME in England (by the england defination now) do often have CFS. Ive always wondered if it was purposely called ME in England and not CFS there.. to bury ME further.

What is it about ME which makes governments (both America and England) want to bury the illness?????

Ask how can two completely different illnesses by given the same name in different countries??? If those in America can get the CDC to stand up and publically define what ME is and then get their doctors to give them the correct diagnoses. That may force England to have to then separate the CFS ones out from the ME ones as after all Wessely and all that will not want their psychological ME patients to have an illness which is being recognised as being serious and a viral thing in America.

The CFS Association in America should be getting the American government and CDC to define publically what ME is and how it differs from CFS. ME NEEDS to be on the government website and being addressed there properly. People need to be asking "WHY!" .. why isnt it there???

If the CFS Association representing also ME throu they are separate illnesses? If so.. maybe a name change there is needed to aknowledge the two different illnesses.

People need to make it clear that they probably have ME not CFS ... get your good doctors to be contacting the CDC.
It would be even better if the media could get hold of this confusion and what appears to be that the CDC does not wish for ME patients to really know that they have ME and not CFS.

 

[BRCforME.org]

Except that the WPI has already tied XMRV to CFS. It may be CCC CFS, but it's still CFS.

 

[Cloud]

This problem with the CDC separating ME from CFS goes back to the very beginning of their creation of CFS in the late 1980's. These attempts to turn a devastating disease into a non illness have been vehemently criticized by good doctors and patients since the beginning of this charade. Oslers Web is a good resource on some of this history and here are a few links on the subject.


http://www.hfme.org/whobenefitsfromcfs.htm

http://www.supportme.co.uk/mecfsguide/history1.htm

 

[aruschima]

Just thought you might like this info on M. E. and CDC history

you guys might be interested in this

http://www.youtube.com/user/xmrvclockticking#p/a/u/0/rpgYTsCtcYw

Also , i just received this link

http://www.rescindinc.org/

Do not agree with all, nevertheless, a strong advocate for M.E. and it will give you some answers to your questions....