NIH intramural research program update

[Courtney Miller]

There is no need to credit me, use the slides as you wish for education, advocacy, sharing purposes. However should you profit financially from them I would ask that you share the dividends

Thanks! No $$, just education. Love the rolling laughs!

 

[BurnA]

This is more than would normally be expected from a group of researchers. But our circumstances in this illness vs the medical community are not normal.

Lets not mix PACE up with this study. Remember one of the goals in getting PACE retracted is so that studies like this can happen. If we get the study before PACE is retracted all the better.

PACE is a sideshow and studies like this will consign it to the scrap heap where it belongs.

However, I am curious - did they mention anything about releasing Data ?

 

[Ecoclimber]

Having not heard the presentation but gleaning the comments concerning Dr. Lapp presentation, I puzzled on why he was chozen to present the Clinical Presentation of Chronic Fatigue Syndrome instead of Klimas, Enlander, Natelson? Availability?

Dr. Natelson has already conducted research concerning the cerebral spinal fluid differences between ME/CFS and Lyme patients and a control group and would have a better understanding on the NIH research concerning the groups involved.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287
Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

Perhaps Dr. Nath is unaware of this study.

 

[viggster]

Having not heard the presentation but gleaning the comments concerning Dr. Lapp presentation, I puzzled on why he was chozen to present the Clinical Presentation of Chronic Fatigue Syndrome instead of Klimas, Enlander, Natelson? Availability?

Dr. Natelson has already conducted research concerning the cerebral spinal fluid differences between ME/CFS and Lyme patients and a control group and would have a better understanding on the NIH research concerning the groups involved.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287
Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

Perhaps Dr. Nath is unaware of this study.

Someone at the CDC chose the speakers today. It was a CDC event.

NIH is doing protein analysis of CSF, so I'm guessing they've seen this study.

 

[acer2000]

If they transplant human cells/fluids into mice it would be interesting to see what happens. I'm not sure mice can get human diseases but I know of several reports of people coming down with CFS after blood transfusions and or transplants so in theory whatever pathogen or toxin that causes the illness is transmissible via bodily fluids/organs.

 

[Kati]

Worth trying as long as they are not limiting themselves to superficial observation (we noticed that the mice didn't want to get out of bed )

 

[halcyon]

I'm not sure mice can get human diseases but I know of several reports of people coming down with CFS after blood transfusions and or transplants so in theory whatever pathogen or toxin that causes the illness is transmissible via bodily fluids/organs.

Chia has killed mice by injecting them with CFS patient stomach biopsy lysates.

 

[Kati]

Chia has killed mice by injecting them with CFS patient stomach biopsy lysates.

Did he publish that?

 

[halcyon]

Did he publish that?

I don't believe so.

 

[5150]

If they transplant human cells/fluids into mice it would be interesting to see what happens. I'm not sure mice can get human diseases but I know of several reports of people coming down with CFS after blood transfusions and or transplants so in theory whatever pathogen or toxin that causes the illness is transmissible via bodily fluids/organs.

Saliva aerosolization & just saliva itself , imo (don't know of any studies and don't know "why not" those studies)

 

[Snow Leopard]

A paper by Walitt on Fatigue in Fibromyalgia:
https://www.researchgate.net/profil...m_clusters/links/55770bda08ae753637538a2a.pdf

They divided patients into two sub-clusters (based on Structural equation modelling), one which had predominantly pain symptoms and a second which had more severe fatigue. The first group had catastrophizing as a key variable that led to fatigue.

Walitt's co-authors on the above study wrote an article (fortunately they are not listed in the NIH study):
Lukkahatai N, Saligan LN. Association of catastrophizing and fatigue: a systematic review. J Psychosom Res 2013;74:100-9.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3553502/

 

[searcher]

Hi everyone-
We just put up a transcript of the talk along with @Kati's screenshots at http://www.meaction.net/2016/02/16/transcripts-and-slides-from-dr-naths-talk-on-nih-study/. Please let me know if you see any issues. Thanks to @Kati for the screenshots and @mango for making an audio recording which I did not have the foresight to do!

Edit: If anyone is up for sharing transcriptions of any of the other talks and/or the Q&A session please let me know. Thanks!

 

[Forbin]

However, I am curious - did they mention anything about releasing Data ?

I don't think it came up.

How hilarious it would have been, though, if someone had asked them if they would be willing to release their anonymized data for professional review after publishing their results, and they had said, "Sure. Why not?"

 

[searcher]

Edit: found it at the end of the Q&A and will add it in

Does anyone remember where the 1500 lysates/analytes came up? I remember it but I don't think it was during the main talk. Was it during q&a? Do you remember @Forbin?

 

[Roy S]

I hope researchers like Ron Davis make extensive public comments about this study after all the details are known. Also it would be good if the patient advisory group would include people like him.

Thanks to everybody doing the necessary critical analyses.

 

[Valentijn]

Maybe they could double up and cover 80 patients (40 from less than 3-5 years, 40 from more), and differentiate between the two stages.

Probably too little $'s would be the objection. But the economies in terms of logic and time and effort, and yes, dollars, would be hard to dispute.

If they dropped the ridiculous control groups (cured Lyme and psychosomatic disorders), they'd have more funding to go toward patients and healthy controls.

 

[olliec]

There is now an MEpedia page about the study to collate what we know so far:
http://me-pedia.org/wiki/NIH_Post-Infectious_ME/CFS_Study

 

[Valentijn]

I'm getting a weird error message for Dr Brian Walitt's Fibromyalgia-Neurasthenia abstract, "Culture, science and the changing nature of fibromyalgia" (2013), but the full paper is still available at http://www.nature.com.sci-hub.cc/nrrheum/journal/v9/n12/abs/nrrheum.2013.96.html

This is looking eerily similar to a Wessely's Neurasthenia and Chronic Fatigue Syndrome: Theory and Practice from 20 years prior:

Abstract | Fibromyalgia is a common but contested illness. Its definition and content have changed repeatedly in the 110 years of its existence. The most important change was the requirement for multiple tender points and extensive pain that arose in the 1980s, features that were not required previously. By 2010, a second shift occurred that excluded tender points, allowed less extensive pain, and placed reliance on patient-reported somatic symptoms and cognitive difficulties (‘fibro fog’) that had never been part of past definitions or content. Fibromyalgia is closely allied with and often indistinguishable from neurasthenia, a disorder of the late 19th and early 20th centuries that lost favour when it was perceived as being a psychological illness. Fibromyalgia’s status as a ‘real disease’, rather than a psychocultural illness, is buttressed by social forces that include support from official criteria, patient and professional organizations, pharmaceutical companies, disability access, and the legal and academic communities.

This sounds like a pretty typical BPS (biopsychosocial) interpretation:

Fibromyalgia is comorbid with a series of other somatic symptom disorders, is associated with psychological illness, and is strongly influenced by social forces.

They seem to be suggesting that imaging and other neurological abnormalities can be reflective of a psychosocial illness:

We believe that the evidence for a psychocultural disorder is strong. The neurobiological aetiology is supported primarily by imaging and neurophysiologic associations.9 However, there is as yet no compelling evidence that an underlying central nervous system disturbance contributes in a substantial or clinically meaningful way to the development of fibromyalgia.

The rest is similar psychobabble, combined with the history of fibromyalgia and neurasthenia. Simon Wessely is indeed quoted extensively, from his article Old wine in new bottles: neurasthenia and “M. E.”. Psychol. Med. 20, 35–53 (1990).

 

[Sidereal]

Extremely worrying.

 

[bullybeef]

If they transplant human cells/fluids into mice it would be interesting to see what happens. I'm not sure mice can get human diseases but I know of several reports of people coming down with CFS after blood transfusions and or transplants so in theory whatever pathogen or toxin that causes the illness is transmissible via bodily fluids/organs.

This was the knowledge base back in 1978. Notice the reference to an 1940s study in which the 'putative agent can be transferred to monkeys.' But the study itself adds that suckling mice inoculated by material from one patient but no abnormalities were found at post mortem.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
http://www.cabdirect.org/abstracts/...2;jsessionid=2CD5A82E3857875B517E1C627E39C1CD