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

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.
 
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Recently named cancer institute director may become head of NIH
Cancer researcher Monica Bertagnolli would take position vacated in 2021 by geneticist Francis Collins
After an extended period in which the National Institutes of Health (NIH) was headed by an interim director, President Joe Biden has picked Monica Bertagnolli for the post, elevating her from the head of the National Cancer Institute (NCI), Science has learned. (The Wall Street Journal and The Washington Post reported the decision earlier this evening.) Biden had picked the 64-year-old cancer surgeon for the NCI position only last year.

As a relative NIH newcomer, Bertagnolli should bring a fresh perspective to an agency some critics have called staid. The physician-scientist would be only the second woman to lead the agency; she came to NCI after stints at Brigham and Women’s Hospital, the Dana-Farber Cancer Center, and Harvard Medical School.

“I am thrilled,” says Carol Greider, a biologist at the University of California, Santa Cruz. “Having an accomplished woman leader nominated to this position for the first time in decades is a powerful signal.”

Greider, who in 2019 served on a working group advising the then–NIH director on preventing sexual harassment, added: “I trust [her expected appointment] will help move the bar in combating the gender and race disparities that have been rampant [in the biomedical community] for years.”
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https://www.science.org/content/art...ancer-institute-director-will-become-head-nih

 
Andy said:
A study looking at cancer fatigue. The link given doesn't work but https://grantome.com/grant/NIH/ZIA-NR000020-03 seems to show that this has been an ongoing investigation into cancer fatigue, and this report from 2014, https://www.hhs.gov/sites/default/f...h-revised-cfsac-mariela-shirley-june-2014.pdf, shows that Saligan's work seems to have used funds that should have gone to ME/CFS research for years. His NIH official profile talks exclusively of cancer related fatigue.

NINR 1ZIANR000019-13 - Investigating Correlates and Therapeutics of Fatigue SALIGAN, LEOREY NIH - $3,655,006
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The link does seem to work now, here is the abstract, it doesn't seem to be about cancer:

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.

The pathophysiology of fatigue remains poorly understood. Dysregulation of pro-inflammatory cytokines (TNF alpha, IL-1 beta, IL-6), HPA axis dysfunction, disturbances of astroglia metabolism, and decreased levels of neurotransmitters (norepinephrine, serotonin) have all been proposed as mechanisms. The relationship between symptoms of depression and fatigue may be bidirectional, implying that these conditions have shared mechanisms.

This association is evidenced by the fact that the cytokines associated with neurovegetative symptoms including fatigue are also associated with high rates of depression. Others argue against the shared mechanism hypothesis, as depressive symptoms may improve with pharmacotherapy, while symptoms of fatigue are resistive. Our investigation characterizes the symptoms of fatigue from different clinical populations (healthy volunteers, patients with fibromyalgia, chronic fatigue syndrome, and mood disorders) using standardized questionnaires and determine if physical activity, pain, depression, fatigue catastrophizing, stress, and daytime sleepiness play a role in their fatigue experience.

This study will also examine the potential role of plasma cytokines, gene expression, and hypothalamic-pituitary-adrenal axis (HPA) functioning in symptoms of fatigue in these individuals. Information collected from this investigation will be useful to improve our understanding of the possible etiologic mechanisms of fatigue.
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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."
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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? :grumpy: 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.
 
Wyva said:
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/
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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.
 
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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."
 
Andy said:
Scroll down on the web page linked? It shows for me.
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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.
 
Andy said:
From an NIH MECFS Information List email,

"NIH’s next ME/CFS Advocacy Call will be held on May 1, 2023 from 12:00 – 1:00 pm ET. The webinar will include updates from NIH on ME/CFS-related research activities and a scientific presentation by Avik Roy, PhD, and Gunnar Gottschalk, PhD, investigators at Simmaron Research and the University of Wisconsin-Milwaukee. Please register in advance!

During the webinar, attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. For those on the phone, please dial *9 to raise/lower your hand and *6 to mute/unmute. Additional instructions for joining by phone are on the Zoom support website. We regret that we may not be able to respond to all questions that we receive, but we will try to answer as many as possible in the time allotted.

Regards,

The Trans-NIH ME/CFS Working Group"
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A reminder about this call - it will be interesting to hear what the NIH is saying on 'updates on ME/CFS-related research activities'.

Note the need to register in advance.
 
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