CDC study reveals CFS patients are severely physically impaired, but have normal mental health

[Countrygirl]

http://www.shoutoutaboutme.com/symptoms/cdc-study-finds-cfs-is-physical-not-mental/

Despite decades of suggesting otherwise, the CDC has just determined that CFS patients have normal mental health function and severe physical impairments.

The findings coincide with the NIH’s decision to drop a key component of its clinical study of post-infectious ME/CFS, amid patient concerns about serious and potentially crippling methodological problems with the study, highlighted in a review by MEAdvocacy.org.

The CDC Multi-site Clinical Assessment of CFS, which began in 2012, collected data from 450 patients at seven clinical centers in the US.

According to the CDC, the aim of the study was “to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME.”

Dr Elizabeth Unger, head of the CDC’s Chronic Viral Diseases Branch, announced the early findings of the multi-site study at a CDC Grand Rounds event on ME/CFS in February.

Those preliminary and as yet unpublished findings reveal that functional status in CFS patients is severely impaired, except for mental and emotion function.

 

[Large Donner]

I would be wary of this shift......

findings reveal that functional status in CFS patients is severely impaired

Functional is the new buzz word.

 

[geraldt52]

After spending 30 years and untold millions of dollars studying, the CDC is now prepared to say that the sun comes up in the east and sets in the west. Thanks, CDC...your competence is unequalled.

 

[BurnA]

After spending 30 years and untold millions of dollars studying, the CDC is now prepared to say that the sun comes up in the east and sets in the west. Thanks, CDC...your competence is unequalled.

I haven't read it but apart from stating the obvious ( to patients at least) is this a nail in the coffin for CBT / GET ?
And definitely a useful study to throw back at people who claim we are against a label of being mentally ill due to stigma.
No, its because we aren't.

 

[anciendaze]

CBT is still advocated for MS patients, where organic disease is unquestioned. That's the catch in the designation biopsychosocial.

 

[duncan]

I suppose there is both good and bad in this.

One of the bad is that as far as I am aware, cognitive declines fall under the mental health domain. I appreciate that cognitive testing is a blunt instrument, but I challenge that our cognitive deficits truly fall within normal limits.

 

[jimells]

I think he buried the lead.

The NIH has also dropped the FMD component of its [Clinical Center Study]

Update (Sunday March 6, 1630 GMT): NIH drops FMD control group

I’d asked Dr Vicky Whittemore is she had any corrections to the content and got this reply:

The only correction I have at this time is that it has been decided that they will not include individuals with functional movement disorders in this study

Thank you, NIH

http://www.meaction.net/2016/03/03/...-may-be-most-comprehensive-and-in-depth-ever/

 

[Simon]

https://twitter.com/i/web/status/701852235211350020

 

[panckage]

I find this interesting:

Mental health is a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully and is able to make a contribution to his or her community.

According to this definition doesn't brain fog qualify as a mental health issue? My brain fog makes it difficult to do with normal things such as cooking or taking out the garbage. Normal stresses of life make me crash and thus I've had to limit my 'normal experiences'

functional status in CFS patients is severely impaired, except for mental and emotion function.

Brain fog severely impairs my mental function. What am I missing here??

 

[Large Donner]

I haven't read it but apart from stating the obvious ( to patients at least) is this a nail in the coffin for CBT / GET ?

CDC latest...

....findings reveal that functional status in CFS patients is severely impaired

"Functional disorders" are treated with CBT.

Functional disorders are diagnosed when there is no physical organic explanation for the symptoms.

Functional disorders rely on a correct diagnosis of "no organic cause" for the disorder and also on the current limits of medical and scientific knowledge as well as the limits that a health care provider is prepared to test an individual.

Functional disorders also rely on arbitrary measures of false and positive in organic tests to determine an organic disease to disqualify the notion of functional disorder in an individual.

Functional disorders are also subject to the limits of research and funding and the politics in medicine and science to progress the understanding of symptomatic mechanisms in disease.

 

[A.B.]

@Large Donner, the term functional status refers to ability to carry out the tasks of everyday life. Take a shower, clean the house, work or study, buy groceries, have a social life, and so on. It has nothing to do with functional disorders.

 

[Large Donner]

@Large Donner, the term functional status refers to ability to carry out the tasks of everyday life. Take a shower, clean the house, work or study, buy groceries, have a social life, and so on. It has nothing to do with functional disorders.

Yes but if you don't have a mental health diagnosis or an organic proven disease, as according to the CDC, and the very definition of ME/CFS pretty much all around the world exactly who has a functional disorder according those very alphabet organisations?

When a doc tells you you have a functional issues or talks about your functional status in the absence of organic disease it means one thing only.

"Functional" is the third way but has all its routes in neurasthenia, psychosomatic, hysteria, conversion disorder etc etc.

Speak to a neurologist and talk about your functional status being as impaired as someone with MS and that you dont have "objective proof of disease" you will most likely be told to try CBT.

 

[BurnA]

Look at the image in Simon's post - it states physical functioning on the left hand side and physical, emotional and social role functioning on the right hand side.

These are not referring to a functional disorder imo, they are comparing how people function in different aspects of life.

 

[jimells]

@Simon I would print your chart and hand it to my primary care provider who insists my illness is "primarily psychological" but I doubt she would pay it any attention. Maybe if it were to be published, she might look at it. Maybe.

Has anyone seen any indication anywhere that CDC actually intends to publish something from the multi-site study before the decade is over? We've already been waiting four years...

What is the difference between "Physical Functioning" and "Physical Role Functioning"?

 

[L'engle]

I find it strange that cognitive functioning and stamina is not a separate category at all on this chart. It's too easy for mental stamina and emotional well-being to being conflated. This could be read as 'ME patients are emotionally sound' or 'ME patients do not have deficits in mental status so should not be viewed as having legitimate cognitive debilitation'.

Kind of dangerous?

 

[Asa]

Because I wanted to better understand:

Functional status is an individual's ability to perform normal daily activities required to meet basic needs, fulfill usual roles, and maintain health and well-being 5, 6.

Functional status subsumes related concepts of interest: functional capacity and functional performance. While functional capacity represents an individual's maximum capacity to perform daily activities in the physical, psychological, social, and spiritual domains of life, functional performance refers to the activities people actually do during the course of their daily lives.5 A maximal exercise test measures physical functional capacity, while a self-report of activities of daily living measures functional performance.

Functional status can be influenced by biological or physiological impairment, symptoms, mood, and other factors.6 It is also likely to be influenced by health perceptions. For example, a person whom most would judge to be well but who views himself as ill may have a low level of functional performance in relation to his capacity.5

http://qol.thoracic.org/sections/key-concepts/functional-status.html

 

[Comet]

http://www.shoutoutaboutme.com/symptoms/cdc-study-finds-cfs-is-physical-not-mental/

Jaw Drop

 

[Antares in NYC]

After spending 30 years and untold millions of dollars studying, the CDC is now prepared to say that the sun comes up in the east and sets in the west. Thanks, CDC...your competence is unequalled.

I'm so glad that the CDC decided to get consulting services from Captain Obvious.
Way overdue!

Maybe this is a step in the right direction?

 

[snowathlete]

looks like progress.

 

[lauluce]

After spending 30 years and untold millions of dollars studying, the CDC is now prepared to say that the sun comes up in the east and sets in the west. Thanks, CDC...your competence is unequalled.

I couldn´t have said it better... finally they discovered the elephant in the room!