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Those preliminary and as yet unpublished findings reveal that functional status in CFS patients is severely impaired, except for mental and emotion function.
The CDC used standardized questionnaires to measure the major domains or characteristics of the illness, including pain, function, fatigue, type and severity of symptoms, and sleep.
Data on medical history, family history, physical examination results, medications and results of laboratory tests was also collected.
One of the tools the CDC used in their assessment was the SF-36 Health survey which defines mental function as psychological distress and psychological wellbeing.
The study showed that mental and emotional function of patients was close to normal, despite the serious nature and often lengthy term of the illness.
The copy of Dr Unger’s slide from the Grand Rounds event shown below has red markers indicating normal values for healthy people and blue boxes representing the range for study participants. The diamonds indicate the study participants’ average score.
FMD control group dropped from new NIH study
Coincidentally, it has been announced that the NIH will drop the controversial functional (psychogenic) movement disorder (FMD) control group from its upcoming clinical study.
The inclusion of the FMD control group and the addition of FMD and behavioral experts to the study ignited patient concerns about whether the study was contrived to validate a psychological basis to the illness.
You can read more about the problems associated with the FMD group here.
UPDATE: Link to NIH study details has been updated – NIH has updated their information [9/3/16]
In the video of the CDC Grand Rounds event shown below, Dr Elizabeth Unger’s presentation begins at the 17:40 mark.