IOM Panelists: Balance = Experts + Information – Bias

[Nielk]

Jennie Spotila of OccupyCFS - http://www.occupycfs.com/2013/12/16/iom-panelists-balance-experts-information-bias/

excerpt:

The overall panel balance is 53% known and 47% unknown to the ME/CFS community. None of us think this is sufficient, but we do not agree on what the right split would be. Some of us think the panel should be 100% ME/CFS experts; others think the addition of at least one or two more experts would be appropriate.

Mary Dimmock has raised a very important point: in order to judge whether this panel is adequate, we have to think about the task. If this panel is going to create a case definition for the broader set of conditions that meet the various CFS criteria, then some might make the argument that this panel is appropriate. But if the panel is focused on the disease we described to the FDA in April, then Mary concludes that the panel needs more, and a broader cross-section, of ME/CFS experts and fewer psychologists. As Mary has reported, HHS and IOM have been vague in detailing which disease group is the focus of the panel.

We’re faced with a chicken-egg dilemma: identifying the disease focus should happen prior to the panel selection, but instead we have a panel with a seemingly vague task focus. This panel composition seems to hold a middle ground: there are not an overwhelming number of ME/CFS experts, but neither are there an overwhelming number of experts in unexplained chronic fatigue, psychogenic models, or “other multi-symptom, complex disorders” as described in the Statement of Work. To our team, the key issue is bias.

 

[alex3619]

The process itself is biased, and the team cannot change that.

The IOM has to include 25% non-experts, but it doesn't have to have 47%. Of those non-experts at least one should be a patient representative or representative of a patient organization, according to IOM standards. At least one is already a patient or former patient, so that part of the standards is covered.

The UK Department of Work and Pensions has just released an "evidence-based" report endorsing the Work Capability Assessments as accurate. Clearly the report is flawed, and I do not think this is from personal bias, I think its from methodological bias.

Such methodological bias ties the hands of researchers. The are not free to explore the topic, but are required to explore only certain things. This limits the available outcomes. We really need to see their contract, not the statement of work.

 

[Nielk]

It is pretty problematic that they are taking so long to reveal the contract even though that information is supposed to be available to us. How can anyone fully endorse this study without seeing what the contract states?

 

[justinreilly]

Allegria says: CFS is a "Neurasthenia Spectrum Disorder" (2012)!!

…And Neurasthenia is a Psychiatric disorder, specifically a Somatoform disorder.

I am posting this to its own thread bc I think it is that important, so I suggest that if you have a comment about this you do it there.

The Neurasthenia paper of Alegria's Jennie cited, below, contains this important quote:
"Likewise, further research is needed to examine the concordance of neurasthenia spectrum disorders (e.g., ICD-10 neurasthenia, CFS, CCMD-2 and CCMD-3 [these last two are the two Chinese Criteria] for neurasthenia) across non-clinical, population-based samples across cultural contexts [cf. 21, 23]." [Emphasis added]

"Prevalence of Neurasthenia, Comorbidity, and Association with Impairment Among a Nationally Representative Sample of US Adults" (2012)

http://forums.phoenixrising.me/inde...impairment-among-a-nationally-represen.27105/

For this proposition, the authors cite the Pune, India study of neurasthenia spectrum disorders. I don't have access to the full article, but the abstract is damning enough:

"Clinically significant fatigue or weakness is a common but understudied clinical problem in India...Alternative criteria sets used in different clinical contexts suggest a range of conditions constituting neurasthenia spectrum disorders (NSDs)...CFS, ICD-10 neurasthenia, DSM-IV draft criteria for neurasthenia, and CCMD-2 [ie Chinese Criteria] neurasthenia."

This study was an attempt to see if the four "neurasthenia categories" mentioned, including CFS, were able to define idiopathic chronic fatigue well!

Paralikar V, Sarmukaddam S, Agashe M, Weiss MG (2007) Diagnostic concordance of neurasthenia spectrum disorders in Pune, India. Soc Psychiatry Psychiatr Epidemiol 42:561–572

http://link.springer.com/article/10.1007/s00127-007-0196-x#page-1


I do not have access to the other study cited:
Starcevic V, Kelin K, Munjiza M (1996) Characteristics of neurasthenia: examination and cross-cultural applicability of ICD-10 diagnostic criteria for research. Eur J Psychiatry 11:289– 297


Alegria repeatedly characterizes Neurasthenia as a Psychiatric disorder. In the final line of her Neurasthenia paper, Alegria calls Neurasthenia a Somatoform disorder:
"Significantly, our study is timely given the attention being paid to the classification of somatoform disorders and comorbidity, as well as on the role of culture and social factors on the epidemiology of such disorders."

 

[Nielk]

This is how neurasthenia appears in ICD-10

Other neurotic disorders

F48.0

Neurasthenia
Considerable cultural variations occur in the presentation of this disorder, and two main types occur, with substantial overlap. In one type, the main feature is a complaint of increased fatigue after mental effort, often associated with some decrease in occupational performance or coping efficiency in daily tasks. The mental fatiguability is typically described as an unpleasant intrusion of distracting associations or recollections, difficulty in concentrating, and generally inefficient thinking. In the other type, the emphasis is on feelings of bodily or physical weakness and exhaustion after only minimal effort, accompanied by a feeling of muscular aches and pains and inability to relax. In both types a variety of other unpleasant physical feelings is common, such as dizziness, tension headaches, and feelings of general instability. Worry about decreasing mental and bodily well-being, irritability, anhedonia, and varying minor degrees of both depression and anxiety are all common. Sleep is often disturbed in its initial and middle phases but hypersomnia may also be prominent.

I was surprised to see that it still appears in the ICD coding since I thought this was an old term not used any longer.

 

[alex3619]

Neurasthenia is a popular diagnosis in China. When first proposed it read like a description of ME does today, but this didn't take off ... what became popular was the Freudian variant, in which neurasthenia was a mental disorder for men who did not get enough sex. From there it evolved even further, but was out of favour for most of last century.

 

[Snowdrop]

Allegria says: CFS is a "Neurasthenia Spectrum Disorder" (2012)!!

…And Neurasthenia is a Psychiatric disorder, specifically a Somatoform disorder.

I am posting this to its own thread bc I think it is that important, so I suggest that if you have a comment about this you do it there.

The Neurasthenia paper of Alegria's Jennie cited, below, contains this important quote:
"Likewise, further research is needed to examine the concordance of neurasthenia spectrum disorders (e.g., ICD-10 neurasthenia, CFS, CCMD-2 and CCMD-3 [these last two are the two Chinese Criteria] for neurasthenia) across non-clinical, population-based samples across cultural contexts [cf. 21, 23]." [Emphasis added]

"Prevalence of Neurasthenia, Comorbidity, and Association with Impairment Among a Nationally Representative Sample of US Adults" (2012)

http://forums.phoenixrising.me/inde...impairment-among-a-nationally-represen.27105/

For this proposition, the authors cite the Pune, India study of neurasthenia spectrum disorders. I don't have access to the full article, but the abstract is damning enough:

"Clinically significant fatigue or weakness is a common but understudied clinical problem in India...Alternative criteria sets used in different clinical contexts suggest a range of conditions constituting neurasthenia spectrum disorders (NSDs)...CFS, ICD-10 neurasthenia, DSM-IV draft criteria for neurasthenia, and CCMD-2 [ie Chinese Criteria] neurasthenia."

This study was an attempt to see if the four "neurasthenia categories" mentioned, including CFS, were able to define idiopathic chronic fatigue well!

Paralikar V, Sarmukaddam S, Agashe M, Weiss MG (2007) Diagnostic concordance of neurasthenia spectrum disorders in Pune, India. Soc Psychiatry Psychiatr Epidemiol 42:561–572

http://link.springer.com/article/10.1007/s00127-007-0196-x#page-1


I do not have access to the other study cited:
Starcevic V, Kelin K, Munjiza M (1996) Characteristics of neurasthenia: examination and cross-cultural applicability of ICD-10 diagnostic criteria for research. Eur J Psychiatry 11:289– 297


Alegria repeatedly characterizes Neurasthenia as a Psychiatric disorder. In the final line of her Neurasthenia paper, Alegria calls Neurasthenia a Somatoform disorder:
"Significantly, our study is timely given the attention being paid to the classification of somatoform disorders and comorbidity, as well as on the role of culture and social factors on the epidemiology of such disorders."

Well she's going to look pretty silly when we start getting good biological research results with biomarkers etc.
Things are happening in that regard.
Best she get off the train to lala land that she's on and join the ranks of real science.
I actually have more to say but am having trouble thinking clearly.