Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

You can view the page at http://www.forums.aboutmecfs.org/content.php?263-The-Stars-Begin-to-Align-at-the-NIH-A-CFS-Review-Panel-For-CFS

 

Its like a chicken and egg scenario; its been thought that they believe they can't get funded - so they don't apply. Was that true?

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Cort, I don't know how you can say this. Didn't you just write some things about how bad the problems were with grants being unfairly rejected? I've been hearing it for 20 years and I don't think the researchers are crazy or stupid or liars.

 

Hey thanks for info, a few very good ones on there, really the scary one is James Jones.....from what I hear he is as bad if not worse than Reeves and his history of working against m.e. patients goes back to the 80s when he helped come up with bogus name "cfs" to water down a real neuro-immune illness.....don't know why he has to be part of this group hopefully he won't get in the way.......

 

There was nothing secretive about this panel. You just have to know where to look: http://www.csr.nih.gov/Roster_proto...e=80&srg=CFSM&SRGDISPLAY=CFS-M&agsqnum=232163

 

patient advocate charlotte made a very strong and good case for how absurd the make up of this panel was (dentists?)...my learning from this: we need to establish a diverse patient committee that meets regularly, ongoingly, and face-to-face (or phone conference call) with NIH officials. Now...i see only gains from such ongoing meetings. no down side.

Rivka,

Charlotte was right on to question why a psychologist working in the field of dentistry is heading the ME/CFS grant review panel.

Needed is someone with broad infectious diseases/immunology knowledge who can stimulate and evaluate grant applications from that research community and who has experience with antiviral/immune modulating clinical trials.

Yes, regular on-going patient meetings are great idea. Much more needs to be done.

 

That's very good news, Cort. Even if there are still a few duds on the panel, having several good people is a big step forward over having no good people. It's exciting to think that at long last they'll have some people who are actually familiar with ME/CFS reviewing the grant applications.

I notice that on the NIH's "Welcome to CSR" page it says that

Since 1946, our mission has remained clear and timely: to see that NIH grant applications receive fair, independent, expert, and timely reviews -- free from inappropriate influences -- so NIH can fund the most promising research

I see that under "Challenges and Changes" it says that one of their five goals is to

Increase the transparency, accountability, and uniformity of NIH peer review, so we can effectively and efficiently achieve our goals

I hope they do want to increase the transparency. I think Cort or the CFSAC could probably give them several suggestions about ways to do that.

 

Cort, I don't know how you can say this. Didn't you just write some things about how bad the problems were with grants being unfairly rejected? I've been hearing it for 20 years and I don't think the researchers are crazy or stupid or liars.

I wasn't implying anything negative; it just made sense to me - they knew they only had a small chance of getting their grant funded (ie they were being unfairly rejected) so they didn't apply. Dr. Glazer said as much in his recent CFSAC testimony. I don't think they're crazy or stupid or whatever - I wouldn't apply in those circumstances either - it would make sense to spend months on a application that wasn't going to get funded.

 

Each grant is reviewed by two or three researchers - so while Dr Jones or someone else could do some damage it would be limited. My understanding is that each reviewer only gets a couple of studies (or one?).

 

I may want to revise my earlier opinion about "a few duds" not being so bad, in light of Jim Jones' latest effort in CFS research, "Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study." The only appropriate response to that kind of garbage is to gag. I don't want him in a position to encourage or allow or, especially, fund any more of this pseudo-scientific nonsense.

 

I may want to revise my earlier opinion about "a few duds" not being so bad, in light of Jim Jones' latest effort in CFS research, "Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study." The only appropriate response to that kind of garbage is to gag. I don't want him in a position to encourage or allow or, especially, fund any more of this pseudo-scientific nonsense.

The researcher is
i) actually named "Jim Jones"
and
ii) publishes articles on psych under that name rather than using "James" or a middle name?
Hey, how about the "Jim Jones Guide to Faith and Religion".

Yes it's his name, but even if it were my given name I wouldn't publish books on politics with under the moniker "Joeseph Stalin".

 

Another view

Another view

We can also look at it another way. How do you change the view of individuals who are preset? Shut them out? Or do you include them so they hear the correct viewpoints? Maybe this is an opportunity to have more direct influence.

Tina

 

Another view

We can also look at it another way. How do you change the view of individuals who are preset? Shut them out? Or do you include them so they hear the correct viewpoints? Maybe this is an opportunity to have more direct influence.

Tina

Good One. You are so wise!

Lynn

 

Thanks

Good One. You are so wise!

Lynn

Thanks Lynn.

And while I think maybe it isn't the best to have a dental person heading it up, from what Cort reported, unless my CFS brain misunderstood, this same group reviews TMJ and fibromyalgia requests.

So, it that is the case, I guess you do need to include a dentist.

Also, well, usually, the leader handles more organizing, assigning, and less actually making the decisions on matters committee decides.

I don't know if this works that way or not.

 

I would be happy if former saboteurs of cfs patients turned around and will hope for the best, but please everyone, shout their history from the rooftops as we go thru this process, jim jones past needs to be known by us and all as do some other folks on the panel (see hilary johnsons website for insights about past saboteurs) as this will be one way to try to keep them honest or if they pull funny stuff then we can be watching and call them out, people need to be forewarned so they can be helpful observers of this process

 

Getting a root canal would be three steps up from the CBT

rofl, true that

 

Wow, that has some incredible talent there. How did we get Dr. Mary Ann Fletcher and Dr. Fred Friedberg (president of International Association of ME) and Dr. Nancy Klimas and Dr. Francic Ruscetti? And some other people who look really super good that I didn't know previously. Just wow.

 

This Fillingim character sounds like not the kind of person who would be helpful in our situation. I looked up his research, too (before I got to the part where someone had kindly posted it), and he's after the CDC's "CFS" division's own heart. We should petition to have him removed on the grounds that there's already been overmuch research on this sort of thing at the expense of much more desperately-needed biomedical stuff.

(Side note: and how does shoulder surgery go with a dental school?)

Someday 70 or 80 years hence when the stigma has been erased, they can start looking into the valid psychological aspects of ME/CFS, but there needs to be a long moritorium on that for the time being. Unless it's on how the (bio)psychosocial model has hurt patients and damaged the doctor-patient relationship and the government's credibility--but we still need the biomedical stuff much more desperately than that.

About James Jones, he really is a scoundrel. I would like to think he's rehabilitatable (although he's had plenty of opportunity for this already, working with Dr. Bristol Sorensen and Dr. Suzanne Vernon), but he really ought to be dismissed outright simply because of this:

An extended concept of altered self: chronic fatigue and post-infection syndromes.

Jones JF. Psychoneuroendocrinology. 2008 Feb;33(2):119-29. Epub 2007 Dec 26.

Chronic Viral Diseases Branch, Division of Viral and Rickettsial Diseases, National Center for Zoonotic, Vectorborne, and Enteric Diseases, Centers for Disease Control and Prevention, Atlanta, GA 30333, USA.

Abstract: Sickness behavior in active infectious diseases is defined here as the responses to cytokines and other mediators of inflammation as well as the adaptability of a pre-existing integrated immunological, psychological, neurological, and philosophical self. These complex behaviors are biologically advantageous to the afflicted individual, but they also impact surrounding individuals. If chronic conditions, such as chronic fatigue syndrome or post-infection fatigue, exhibiting these behaviors follow infection in the absence of ongoing changes in immunological self associated with an active infection or subsequent injury, they are currently considered illness states rather than true diseases. Self-referential recognition (interoception) of bodily processes by the brain and subsequent unconscious and conscious adaptive responses arising in the brain, i.e., in the endocrine system and immune systems, which are initiated during the infection and would normally lead to positive maintenance, may become maladaptive and lead to an "extended altered self state." Exploratory measurements of such alterations using a "top-down" approach such as monitoring responses to appropriate challenges can be obtained using functional brain imaging techniques. Once identified, processes remediable to biological/pharmacologic and/or psychological intervention can be targeted in directed trials.

Lots of stringy sentences and psycho-jargon, but try reading just the bold to try to make some sense out of it.

Unless he is prepared to redact such opinions, he ought to be dismissed. Blaming the patient is a sadly unprofessional way to conduct oneself and ought not to be countenanced.

I realize he stuck some other stuff in there (cytokines, the brain unconsciously does stuff, we might need actual medicine), but the conclusion is actually this is not an actual disease; CFS is only a mock disease in the opinion of James Jones. Shocking. No one who says it's a mock disease belongs on this panel. Ever.

Edit: I'd like to change my mind and agree with Tina. Not necessarily that Jones should be on the panel, but that no one, no matter how much he's hardened his mind, is beyond the reach of truth. Everyone is capable of change.

 

Biaggioni was new to me, so I looked him up, and just by his last three studies I am so excited. Just look!

Orthostatic Hypotension and Cardiovascular Risk.
Shibao C, Biaggioni I.
Hypertension. 2010 Nov 8. [Epub ahead of print] No abstract available. PMID: 21059992

Long-term Treatment With Rituximab of Autoimmune Autonomic Ganglionopathy in a Patient With Lymphoma.
Hollenbeck R, Black BK, Peltier AC, Biaggioni I, Robertson D, Winton EF, Raj SR.
Arch Neurol. 2010 Nov 8. [Epub ahead of print]PMID: 21059985

Comparative efficacy of yohimbine against pyridostigmine for the treatment of orthostatic hypotension in autonomic failure.
Shibao C, Okamoto LE, Gamboa A, Yu C, Diedrich A, Raj SR, Robertson D, Biaggioni I.
Hypertension. 2010 Nov;56(5):847-51. Epub 2010 Sep 13.PMID: 20837887
"Orthostatic hypotension affects patients with autonomic failure producing considerable disability because of presyncopal symptoms."
http://www.ncbi.nlm.nih.gov/pubmed/20837887

Wow, isn't that cool? Just the researcher we need.

There's lots more on OI and POTS, the vanilloid receptor (haven't I heard something about that in connection to ME?), inflammation, autonomic study, and cell biology. This is a serious scientist with interests in the actual pathology areas of ME.

And looky here:
Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Biaggioni I, Robertson D, Shelton RC. "Psychiatric profile and attention deficits in postural tachycardia syndrome." J Neurol Neurosurg Psychiatry. 2009 Mar;80(3):339-44. Epub 2008 Oct 31. PMID: 18977825

Department of Psychiatry, Vanderbilt University School of Medicine, 1500 21st Ave, South, Nashville, TN 37212, USA.
Abstract

OBJECTIVES: Patients with postural tachycardia syndrome (POTS) often appear anxious and report inattention. Patients with POTS were formally assessed for psychiatric disorders and inattention and compared with patients with attention deficit hyperactivity disorder (ADHD) and control subjects.

METHODS: Patients with POTS (n = 21), ADHD (n = 18) and normal control subjects (n = 20) were assessed for DSM-IV psychiatric disorders and completed a battery of questionnaires that assessed depression, anxiety and ADHD characteristics.

RESULTS: Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood.

CONCLUSIONS: Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability.

 

I also wasn't familiar with Broderick, although I thought I'd heard his name (I was thinking maybe Canadian Consensus document, but haven't yet checked), but that's my bad. He's on a lot of studies I'm familiar with like the most recent NK as biomarker study and several others with Klimas, Fletcher, and/or Vernon.

New one of interest (not CFS, but related):

Broderick G, Kreitz A, Fuite J, Fletcher MA, Vernon SD, Klimas N. "A pilot study of immune network remodeling under challenge in Gulf War Illness."
Brain Behav Immun. 2010 Oct 16. [Epub ahead of print] PMID: 20955779

Department of Medicine, University of Alberta, Edmonton, Canada.
Abstract

Gulf War Illness (GWI) is a complex disorder affecting nervous, endocrine and immune regulation. Accordingly, we propose that GWI presents with a distinct pattern of immune signaling. To explore this we compared interaction patterns linking immune markers and their evolution during exercise.... This potentially heightened lymphocyte and HPA axis responsiveness to IL-1 stimulation in the context of a mixed Th1:Th2 immune signature supports an autoimmune component in GWI etiology.

 

Hanson is a cell biologist with an interest in mitochondria. Has done a recent paper on MRSA. RNA editing, organelles, microfilaments and microtubules, really interesting stuff.

Older articles on migraines, apoptosis.

I can't find any XMRV stuff. Maybe Cort is referring to as-yet-unpublished work? I should check the XMRV list but it's rather late and I feel a bit lazy.

There is this, however:

Hanson SJ, Gause W, Natelson B. "Detection of immunologically significant factors for chronic fatigue syndrome using neural-network classifiers." Clin Diagn Lab Immunol. 2001 May;8(3):658-62. PMID: 11329477
"A sensitivity analysis of the network found differences between groups that are consistent with the hypothesis that CFS symptoms are a consequence of immune system dysregulation."

 

Szomolanyi-Tsuda is a geneticist and cell biologist. Also with an interest in specific pathologies relevant to ME/CFS.

Tay CH, Szomolanyi-Tsuda E, Welsh RM. "Control of infections by NK cells." Curr Top Microbiol Immunol. 1998;230:193-220. Review. No abstract available. PMID: 9586357

Guay HM, Mishra R, Garcea RL, Welsh RM, Szomolanyi-Tsuda E. "Generation of protective T cell-independent antiviral antibody responses in SCID mice reconstituted with follicular or marginal zone B cells." J Immunol. 2009 Jul 1;183(1):518-23. PMID: 19542462

Mishra R, Chen AT, Welsh RM, Szomolanyi-Tsuda E. "NK cells and gammadelta T cells mediate resistance to polyomavirus-induced tumors." PLoS Pathog. 2010 May 27;6(5):e1000924. PMID: 20523894

Kemball CC, Pack CD, Guay HM, Li ZN, Steinhauer DA, Szomolanyi-Tsuda E, Lukacher AE. "The antiviral CD8+ T cell response is differentially dependent on CD4+ T cell help over the course of persistent infection." J Immunol. 2007 Jul 15;179(2):1113-21. PMID: 17617604