US funding for ME/CFS research moved from MOSS to IFCN (doesn't seem good to me)

[leelaplay]

Jill McLaughlin posted this to co-cure Feb 22 '10

[if: This doesn't look good to me. It seems the focus of researchfunded is changing away from focus on the disease or disease process. I don't remember this being an issue at the CFSAC. Seems it should be! Also, further down it says only 15% of the peer-reviewers have published in the field.]

"Research proposed in applications reviewed by study sections in the IFCN IRG may have relevance to disorders or disease processes, but the emphasis would be on the effect of the process on the structure or function of the system under investigation, rather than on the disease process itself."

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IFCN - Integrative, Functional, and Cognitive Neuroscience Scientific Areas of Integrated Review Groups (IRGs)

It appears that CFS has moved from the MOSS (Musculoskelatal, Oral
and Skin Science) review groups to IFCN - Integrative, Functional,
and Cognitive Neuroscience Scientific Areas of Integrated Review Groups (IRGs).

The description of this review group states: "Research proposed in
applications reviewed by study sections in the IFCN IRG may have
relevance to disorders or disease processes, but the emphasis would
be on the effect of the process on the structure or function of the
system under investigation, rather than on the disease process itself."
Then what about the study of the disease process itself? Seems that
should be the main consideration. If we do not know the disease
process then how can we determine the effect on the process?

The CSR administrator for the Chronic Fatigue Syndrome Special
Emphasis Panel is Dr. Lynn Leuthke, a PhD in audiology specializing
in deafness and communication disorders.

Dr. Cheryl Kitt (Deputy Director, Center for Scientific Review,
NIH) made a presentation to the CFSAC in 2009 and gave a cursory overview
of the review process. The CFSAC should have had ample notice and
input to the changes and there should have been sufficient time for
discussion of the proposed move and placement even during agency reports.
The CFSAC research subcommittee has been working in this area and
looked at the expertise of reviewers on the CFS SEP and found that
approximately 15% had published in the ME/CFS area. It is imperative
to have more people with knowledge of ME/CFS on the review committees
that evaluates the grants in this area. The reason for change is to ensure
better outcomes.

The patient community should be kept better informed of these matters.

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http://cms.csr.nih.gov/PeerReviewMeetings/CSRIRGDescriptionNew/IFCNIRG/

Home > Peer Review Meetings > Review Group Descriptions > IFCN - Integrative, Functional, and Cognitive Neuroscience
Scientific Areas of Integrated Review Groups (IRGs)

For a listing of the Scientific Review Officer and membership roster for each study section, click on the study section roster under the study section name within an IRG listed below or go to the study section index (study sections listed alphabetically) and click on the specified roster next to the name of the study section.

Integrative, Functional, and Cognitive Neuroscience IRG [IFCN]
Last updated on 24th November, 2008

The ten study sections comprising the Integrative, Functional, and Cognitive Neuroscience [IFCN] IRG review applications within a very wide range of neuroscience research aimed at furthering our understanding of how the nervous system is organized and functions at an integrative, systems level. Specific areas reviewed by the IFCN IRG include: studies of the neural basis of emotional and motivational behavior; regulation of function, at the systems level, by neuroendocrine and neuroimmune influences; the analysis of system function under varying behavioral states, such as sleep and hibernation; the basis of biological rhythms; the maintenance of homeostasis; chemosensation, hearing, balance, touch, somatosensation, and visual perception; motor systems and sensorimotor integration; the integration of multisensory information; the neurobiological basis of learning, memory and other cognitive processes; computational and theoretical models of cognitive processes; mechanisms underlying neural coding of complex stimuli (e.g., pattern recognition, spatial transformations, speech perception); and attention and its effects on information processing in the nervous system. Research proposed in applications reviewed by study sections in the IFCN IRG may have relevance to disorders or disease processes, but the emphasis would be on the effect of the process on the structure or function of the system under investigation, rather than on the disease process itself.

In addition to this IRG, the Molecular, Cellular, and Developmental Neuroscience [MDCN] and Brain Disorders and Clinical Neuroscience [BDCN] IRGs within CSR focus on the review of neuroscience-related applications, and the Biobehavioral and Behavioral Processes [BBBP] IRG also has some shared interests with the IFCN IRG. Please see the descriptions and shared interest statements of these IRGs for a complete description of their review venues.

The following study sections are included in the IFCN IRG:

Auditory System Study Section [AUD]
Biological Rhythms and Sleep Study Section [BRS]
Chronic Fatigue Syndrome/ Fibromyalgia Syndrome Special Emphasis Panel [CFS SEP]
Cognitive Neuroscience Study Section [COG]
Central Visual Processing Study Section [CVP]
Neurobiology of Learning and Memory Study Section [LAM]
Neurotoxicology and Alcohol Study Section [NAL]
Neurobiology of Motivated Behavior Study Section [NMB]
Neuroendocrinology, Neuroimmunology and Behavior Study Section [NNB]
Somatosensory and Chemosensory Systems Study Section [SCS]
Sensorimotor Integration Study Section [SMI]


For the neurosciences, the fellowship [F01, F02A, F02B, F03A, and F03B] and small business (SBIR/STTR) [Clinical Neurophysiology, Devices, Auditory Devices and Neuroprosthesis, Pharmacology and Diagnostics for Neuropsychiatric Disorders and Neural Systems, Visual Systems, and Molecular and Cellular Neuroscience] study sections have been co-localized in the Emerging Technologies and Training in Neurosciences IRG (ETTN) effective April 2008.

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Last updated: March 21, 2009
_______________________________________________________________________________
http://cms.csr.nih.gov/PeerReviewMeetings/CSRIRGDescriptionNew/IFCNIRG/CFSSEP.htm

Home > Peer Review Meetings > Review Group Descriptions > IFCN - Integrative, Functional, and Cognitive Neuroscience
Chronic Fatigue Syndrome/ Fibromyalgia Syndrome Special Emphasis Panel [CFS SEP]

[CFS Roster]

The Chronic Fatigue Syndrome/ Fibromyalgia Syndrome [CFS SEP] continuing Special Emphasis Panel [SEP] reviews applications in the multiple disciplines applied to studies of the causes, manifestations and treatments of the Chronic Fatigue Syndrome, the Fibromyalgia Syndrome and other chronic polysystemic morbidity syndromes.

Specific areas covered by CFS:

Etiopathogenesis and diagnosis

Ameliorative and therapeutic interventions

Health Services

Disciplines involved/evaluated, include aspects of Allergology, Alternative Medicine, Behavioral Sciences, Chiropractic Medicine, Diagnostic Laboratory Sciences, Epidemiology, Homeopathic Medicine, Immunology, Infectious Diseases, Internal Medicine, Medicinal Chemistry, Microbiology, Neurology, Occupational Therapy, Osteopathic Medicine, Pharmacology, Physical Therapy, Psychiatry, Psychology, Psychopharmacology, Rheumatology, and Virology

CFS has the following shared interests outside the IFCN IRG:

Since the etiology of CFS, FMS and the related conditions remains undefined, the applications reviewed by this group range over the wide array of disciplines listed above, and individually are frequently multidisciplinary. Since there is the potential for overlap with many other study sections, the principal determining factor for referral to this panel should be the major emphasis of the application being on the study of one of the chronic polysystemic morbidity syndromes identified in this group.


IFCN - Integrative, Functional, and Cognitive Neuroscience
Auditory System Study Section [AUD]

Biological Rhythms and Sleep Study Section [BRS]

Chronic Fatigue Syndrome/ Fibromyalgia Syndrome Special Emphasis Panel [CFS SEP]

Cognitive Neuroscience Study Section [COG]

Central Visual Processing Study Section [CVP]

Neurobiology of Learning and Memory Study Section [LAM]

Neurotoxicology and Alcohol Study Section [NAL]

Neurobiology of Motivated Behavior Study Section [NMB]

Neuroendocrinology, Neuroimmunology and Behavior Study Section [NNB]

Somatosensory and Chemosensory Systems Study Section [SCS]

Sensorimotor Integration Study Section [SMI]

Integrative, Functional, and Cognitive Neuroscience IRG [IFCN]

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Last updated: March 21, 2009

 

[Hope123]

Island Finn, I do not know the ins and outs of NIH funding -- it is a complex topic but from what I have gathered, it's an issue not just for CFS but for many other conditions. A lot of grant announcements are very general and not aimed at a particular condition as NIH funds a lot of basic science work. They want work that will effect more than the immediate area of the condition. It's frustrating to researchers at times but part of the art of obtaining grants is knowing how to find and fit your work into a specific call for proposal. The problem with CFS is that we are under the Women's Health office which can be concerning because it's such a broad area. Other topics, like how heart disease affects women, are also placed under Women's Health but the difference is that it also fits under the National Heart Lung Blood Institute.

For those interested, this e-book is available free (actual book you need to pay):

http://www.iom.edu/Reports/1998/Sci...Priority-Setting-and-Public-Input-at-NIH.aspx

 

[Dolphin]

Jill McLaughlin posted this to co-cure Feb 22 '10

[if: This doesn't look good to me. It seems the focus of researchfunded is changing away from focus on the disease or disease process. I don't remember this being an issue at the CFSAC. Seems it should be! Also, further down it says only 15% of the peer-reviewers have published in the field.]

"Research proposed in applications reviewed by study sections in the IFCN IRG may have relevance to disorders or disease processes, but the emphasis would be on the effect of the process on the structure or function of the system under investigation, rather than on the disease process itself."

This is what I sent Jill at the time for what it's worth (too tired, etc to re-phrase)

Hi Jill,

This is interesting.

In the UK, the MRC came up with a research strategy in 2003 which said studying the aetiology and pathophysiology wasn't necessary.
This was based on the idea that rehabilitation therapies of one sort or another could be the answer without knowing the cause of the problem.

This is what the CBT School of Thought (aka Wessely/Sharpe/White/Chalder School of Thought) like.

Bye,

Tom

 

[justinreilly]

The specific sub-group it's in, CFS SEP (special emphasis panel) seems fine. It says they are going to look at it from a multi-organ systems viewpoint, which is good. There are a range of specialties involved which is nice, but they include psychiatry, psychology and psychopharmachology but not endocrinology.
It does say they will look at the "etiopathogenesis and diagnosis" as well as treatments and health services so this seems fine. I hope it's just an oversight that it said they won't accept grant proposals regarding actual diseases or disease processes. The word 'functional' in the group title makes me uneasy since 'CFS' gets thrown into 'functional somatic syndromes' by many doctors which is the 'general medicine' analog to psychiatry's 'somatization.' I couldn't find a definition of functional neuroscience. Wikipedia referred a link from "functional neuroscience' to 'neurophysiology' so that seems like basically a systems approach to neurology which is good.

 

[justinreilly]

I sent an email to grantsinfo@nih.gov:

"I have ME/CFIDS. I noticed that recently the CFS SEP (special emphasis panel) got put in the Integrative, Functional, and Cognitive Neuroscience IRG [IFCN].

Your website says:

"Research proposed in applications reviewed by study sections in the IFCN IRG may have relevance to disorders or disease processes, but the emphasis would be on the effect of the process on the structure or function of the system under investigation, rather than on the disease process itself."

http://cms.csr.nih.gov/PeerReviewMeetings/CSRIRGDescriptionNew/IFCNIRG/

I hope this is not true for the "CFS SEP" as this would be unacceptable. Research into the disease and disease process is desperately needed.

Please confirm that this is not the case and change the website. Or put me in contact with an admistrator with whom I can discuss this matter. Thanks for your time.

Sincerely,
Justin Reilly, esq."

 

[Dolphin]

Functional is a word similar to "Medically Unexplained"

(Sample reference)

Conversely, although doctors may think the term “functional” is pejorative,6 patients did not perceive it as such.

from:
Free full text: http://www.bmj.com/cgi/reprint/325/7378/1449
What should we say to patients with symptoms unexplained by disease? The "number needed to offend".

Stone J, Wojcik W, Durrance D, Carson A, Lewis S, MacKenzie L, Warlow CP, Sharpe M.

BMJ. 2002 Dec 21;325(7378):1449-50.

University Department of Clinical Neurosciences, Western General Hospital, Edinburgh EH4 2XU. jstone@skull.dcn.ed.ac.uk

---------------
Some of these authors are very "hardline" psychobabblers. For example, they like the concept hysteria. And when somebody (Slater?) criticised an example of hysteria (person turned out to have vCJD - human "mad cow disease" - they said the person could have vCJD and hysteria!

Anyway just warning people.
In the UK anyway, there are a lot of neurologists who are quite "intolerant" of some patients who attend their clinics and like to engage in psychobabble regarding such patients.

 

[Dolphin]

The specific sub-group it's in, CFS SEP (special emphasis panel) seems fine.

There has been a CFS SEP for many years.

 

[leelaplay]

I sent an email to grantsinfo@nih.gov:

"I have ME/CFIDS. I noticed that recently the CFS SEP (special emphasis panel) got put in the Integrative, Functional, and Cognitive Neuroscience IRG [IFCN].

Your website says:

"Research proposed in applications reviewed by study sections in the IFCN IRG may have relevance to disorders or disease processes, but the emphasis would be on the effect of the process on the structure or function of the system under investigation, rather than on the disease process itself."

http://cms.csr.nih.gov/PeerReviewMeetings/CSRIRGDescriptionNew/IFCNIRG/

I hope this is not true for the "CFS SEP" as this would be unacceptable. Research into the disease and disease process is desperately needed.

Please confirm that this is not the case and change the website. Or put me in contact with an admistrator with whom I can discuss this matter. Thanks for your time.

Sincerely,
Justin Reilly, esq."

yay Justin! Very well done.