USA: NIH National Institutes of Health news - next ME/CFS webinar 14 Jan 2025

yes, those pieces are really good. I try to repost them on VB as well.

 

why has spending dropped by $4 million from last year? And this funding includes the funding for the centers? Or would it just include the center funding mentioned above? There must be other funding going annually to the centers beyond the above. ADD: The grant for millions for the fatigue study especially seems especially inappropriate, especially given that it's a third of the stated funding.

 

davidtuller
@davidtuller1

Why is the NIH counting a $3.6 million award to a project on cancer-related fatigue as part of the $13 million spent on its category for CFS and ME/CFS?
@jspotila
https://virology.ws/2023/04/14/tri

https://twitter.com/user/status/1646785018507964416


Trial By Error: Why Did the NIH List an Award for Research on Cancer-Related Fatigue in Its List of Spending on ME/CFS?
By David Tuller / 14 April 2023

https://virology.ws/2023/04/14/tria...ed-fatigue-in-its-list-of-spending-on-me-cfs/

 

Recently named cancer institute director may become head of NIH
Cancer researcher Monica Bertagnolli would take position vacated in 2021 by geneticist Francis Collins

https://www.science.org/content/art...ancer-institute-director-will-become-head-nih

 

The link does seem to work now, here is the abstract, it doesn't seem to be about cancer:

Not impressed by the potential bidirectional relationship between depression and fatigue, catastrophizing, questionnaires again. Too many bad experiences with these studies...

Also, the MEpedia page about Saligan is interesting:

In a very small uncontrolled study (n = 9) exploring the relationship between gene expression and pain catastrophizing in fibromyalgia, Saligan and his co-authors used a score of 16 on the Pain Catastrophizing Scale as the threshold for determination of "high catastrophizing".[3] That is in stark contrast with the threshold of 30 recommended by the scale's creators to indicate a "clinically relevant level of catastrophizing," and a mean score for 851 injured workers was 20.90.[4] Even the high catastrophizing subgroup (n = 5) in the study averaged a pain catastrophizing score of only 23.6, well below the recommended threshold. The authors concluded that "specific physiological pathways may possibly delineate pain and catastrophizing mechanisms."
​

The study (paywalled):
Gene expression profiles of fatigued fibromyalgia patients with different categories of pain and catastrophizing: A preliminary report, 2013, Lukkahatai, Walitt, Saligan et al


https://www.nursingoutlook.org/article/S0029-6554(13)00062-6/fulltext/

 

Very annoyed to see Saligan's name pop up yet again. Seriously, why do they keep involving and prioritizing these problematic, psychosomatically oriented people? I remember that we looked into Saligan's work both during the P2P process and then again later when it was announced that he would be part of the intramural study, and it wasn't a nice read at all.

 

The mental gymnastics these people do are impressive. They go from:

"Fatigue is defined as a lack of energy and an overwhelming sense of tiredness that is distinguishable from sadness or weakness. Fatigue in the absence of psychological co-morbidities such as depression, has been associated with many neurological conditions, including multiple sclerosis, Parkinsons disease, motor neuron disease, stroke and post-polio syndromes."

To

"It's definitely psychosomatic. Give them the depression and symptom catastrophizing questionnaires and lower the thresholds by half to make sure they come out positive".

All evidence in their own abstract points to their hypothesis being utterly wrong and they somehow ignore all of it.

They do not know how to think and should be fired from medical research, let alone work at NIH. If medicine worked like other fields, this would be a major scandal for the NIH. But because psychosomatic researchers have a free pass to do anything they want, this is just another day in the office.

 

From an NIH MECFS Information List email.

"Recently, NIH announced the development of an ME/CFS Research Roadmap aimed to identify research priorities to move the field toward translational studies and clinical trials. We are excited to share that the ME/CFS Research Roadmap Working Group of Council has been selected! The full roster and details about the roadmap development process and timeframe can be found here.

Additional opportunities for researchers, clinicians, people with lived experience, and others to participate in roadmap development will be announced via this listserv and posted to the NANDS Council webpage in the coming weeks. For questions about the roadmap, please contact: MECFSResearchRoadmap@ninds.nih.gov."

 

Scroll down on the web page linked? It shows for me.

 

Uh, this is actually a pretty good roster.

Still massively underperforming on the transparency side, however. This business-as-usual of doing everything in secret is really not working out. We only ever hear about small bits after they happen, and barely at that.

There's really just no motivation for patient involvement, the LC program really makes that clear. The HIV initiative was a one-and-done thing never to be repeated again. They'd rather fail in secret than succeed thanks to our involvement, or I guess they just can't imagine doing any better than they've been doing in secret.

But at least what's being said and done in secret behind closed doors has a chance of being somewhat useful.

 

https://twitter.com/user/status/1652047433424338945

 

On now!!

 

Nath says there will be many papers from MECFS study—paper on muscle is also submitted. I think Nath also said clinical trials are possible—if I heard correctly—this is good news.