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

The NIH Director's Blog talks about the two recent papers on microbiome disruption in ME/CFS:

More Clues into ME/CFS Discovered in Gut Microbiome

https://directorsblog.nih.gov/2023/02/14/more-clues-into-me-cfs-discovered-in-gut-microbiome/
NIH Director's Blog said:
As many as 2.5 million Americans live with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short. It’s a serious disease that can often arise after an infection, leaving people profoundly ill for decades with pain, cognitive difficulties, severe fatigue, and other debilitating symptoms.

Because ME/CFS has many possible causes, it doesn’t affect everybody in the same way. That’s made studying the disease especially challenging. But NIH is now supporting specialized research centers on ME/CFS in the hope that greater collaboration among scientists will cut through the biological complexity and reveal answers for people with ME/CFS and their families.

So, I’m pleased to share some progress on this research front from two NIH-funded ME/CFS Collaborative Research Centers. The findings, published in two papers from the latest issue of the journal Cell Host & Microbe, add further evidence connecting ME/CFS to distinctive disruptions in the trillions of microbes that naturally live in our gastrointestinal tracts, called the gut microbiome [1,2].

Right now, the evidence establishes an association, not direct causation, meaning more work is needed to nail down this lead. But it’s a solid lead, suggesting that imbalances in certain bacterial species inhabiting the gut could be used as measurable biomarkers to aid in the accurate and timely diagnosis of ME/CFS. It also points to a possible therapeutic target to explore.
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Email from the NIH ME/CFS Information List.

"The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will sponsor a Scientific Workshop on Post Dialysis Fatigue on May 22-23, 2023. Please visit this URL for more information about the workshop and to register: https://www.niddk.nih.gov/news/meetings-workshops/2023/scientific-workshop-on-post-dialysis-fatigue

The program will have components of the viewpoint from individuals with lived experience, lessons learned from other fields such as ME/CFS, measuring fatigue, biological discovery, adoption science, and social determinants of health.

NIDDK would value your voices at the workshop."

The agenda can be seen here, https://www.niddk.nih.gov/news/meet...ific-workshop-on-post-dialysis-fatigue?agenda which includes

Session III: Lessons Learned
1:45 p.m. – 2:05 p.m.
Lessons Learned from Chronic Fatigue Syndrome (CFS)
Dedra Buchwald, M.D., Director and Professor, Institute for Research and Education to Advance Community Health, Washington State University; Past President, American Association of Chronic Fatigue Syndrome (now International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)

Topics for Discussion:
  • What challenges did the field face in medically advancing CFS, a disease without hard diagnostic markers?
  • What strategies were most successful at overcoming these barriers? What challenges does the field continue to face?
  • What strategies will move the field forward? Please share your lessons learned.
2:05 p.m. – 2:25 p.m.
The Last Battle of the Gulf War: How Did We Scientifically Conquer Gulf War Illness (GWI)?
Robert Haley, M.D., Professor of Medicine and Chief of Epidemiology, U.S. Armed Forces Veterans; Distinguished Chair for Medical Research, The University of Texas Southwestern Medical Center

Topics for Discussion:
  • Describe the process for uncovering and validating an epidemiologic case definition and exposure agent for GWI. How can we apply this approach for PDF when we have no accepted case definition and are unclear of what causes PDF?
  • Briefly touch on how adjunctive neuroimaging pathology and the discovery of PON1 affected the science and practice of GFI. How did this affect the patient?
 
Long Covid FY24 budget request:
NIH: $0
AHRQ: $19M for research on LC care delivery
CDC: $25M to continue studying LC
HRSA: $130M to support integrated specialty care & training for PCPs

Supporting documents:
NIH: https://officeofbudget.od.nih.gov/br.html
AHRQ: https://ahrq.gov/cpi/about/mission/budget/2024/index.html
CDC: https://cdc.gov/budget/documents/fy2024/FY-2024-CDC-congressional-justification.pdf
HRSA: https://hrsa.gov/sites/default/files/hrsa/about/budget/budget-justification-fy2024.pdf





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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"
 
From an NIH MECFS Information List email,

"NIH has issued three funding opportunity announcements of interest to the ME/CFS research community:

RFA-NS-24-022

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54 Clinical Trial Optional)


RFA-NS-23-021

Understanding Neurological Effects of COVID-19 and Post-Acute Sequelae of SARS-CoV-2 Infection (R01 Clinical Trial Optional)

https://grants.nih.gov/grants/guide/rfa-files/RFA-NS-23-021.html



RFA-NS-23-022

Understanding Neurological Effects of COVID-19 and Post-Acute Sequelae of SARS-CoV-2 Infection (R21 Clinical Trial Optional)

https://grants.nih.gov/grants/guide/rfa-files/RFA-NS-23-022.html


Researchers who are considering applying for these funding announcements are encouraged to contact the Scientific/Research Contact(s) listed in the RFAs.

Regards,
The Trans-NIH ME/CFS Working Group"
 
Andy said:
From an NIH MECFS Information List email,

"NIH has issued three funding opportunity announcements of interest to the ME/CFS research community:

RFA-NS-24-022

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54 Clinical Trial Optional)
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Of note:

“For studies proposed under this RFA, it is recommended that the investigators utilize the Canadian Consensus Criteria for ME/CFS as proposed by Carruther and colleagues in 2003 and revised by Jason and colleagues in 2010, and the case definition from the Institute of Medicine Report on ME/CFS.”
 
Andy said:
From an NIH MECFS Information List email,

"NIH has issued three funding opportunity announcements of interest to the ME/CFS research community:

RFA-NS-24-022

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54 Clinical Trial Optional)
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Funding for the ME/CFS Collaborative Research Centers. :mad: :banghead: :cry:
Funds Available and Anticipated Number of Awards
The following NIH components intend to commit the following amounts in FY {2024 - FY2029}:

NINDS will commit $3,220,123 total costs per year over 5 years to support components that align with the mission of the Institute.

NIAID will commit $750,000 total costs per year over 5 years to support components that align with the mission of the Institute.

NCCIH will commit $250,000 total costs in year 1, and $350,000 total costs per year in years 2-5 years to support the components that align with complementary and integration health interests

Award Budget
Application budgets are limited to $1,200,000 direct costs per year, and need to reflect the actual needs of the proposed project.

Award Project Period
The maximum project period is 5 years.
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M. and S. Shaw
@twoShaws
People living w/ #MyalgicEncephalomyelitis #LongCOVID #pwME #pwLC, did you see that on https://report.nih.gov/funding/categorical-spending#/
, @NIH reported to Congress that it spent only $12.6 million ($12,617,492) on MEcfs research in FY 2022? This is dangerous. @NINDSdirector is failing ppl w/ #MEcfs
8:55 PM · Apr 10, 2023



Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
Table Published: March 31, 2023
https://report.nih.gov/funding/categorical-spending#/

(There is no direct link for this page. You have to use the link above to get to it.)

Chronic Fatigue Syndrome (ME/CFS)
Data for Fiscal Year: 2022

NINDS 5R01NS111105-03 - Maintenance and Incidence of ME/CFS following Mono JASON, LEONARD DE PAUL UNIVERSITY IL $560,204

NINDS 5R21NS120087-02 - Imaging inflammation in the whole body and brain of ME/CFS patients JAMES, MICHELLE STANFORD UNIVERSITY CA $235,253

NIAID 5R21AI159710-03 - Endogenous retrovirus analyses in myalgic encephalomyelitis LI, DAWEI FLORIDA ATLANTIC UNIVERSITY FL $191,541

NIAID 5R01AI159314-02 - Altered T Cell Responses in Myalgic Enchephalomeylitis/Chronic Fatigue Syndrome (ME/CFS) SELIN, LIISA UNIV OF MASSACHUSETTS MED SCH WORCESTER MA $488,934

NINDS 5R01NS109529-04 - Measuring neuroinflammation in chronic fatigue syndrome with whole-brain magnetic resonance spectroscopy YOUNGER, JARRED UNIVERSITY OF ALABAMA AT BIRMINGHAM AL $400,564

NINDS 5R01NS116887-03 - Mechanistic Assessment of N-Acetylcysteine as an Antioxidant Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Through Dose Response and Treatment Target Engagement SHUNGU, DIKOMA WEILL MEDICAL COLL OF CORNELL UNIV NY $583,100

NINDS 5R01NS117638-02 - A Cardiovascular Analysis of Post-exertional Malaise. NATELSON, BENJAMIN ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI NY $667,322

NIAID 5R01AI139550-05 - Molecular and single-cell immunology of myalgic encephalomyelitis/chronic fatigue syndrome DAVIS, RONALD STANFORD UNIVERSITY CA $695,556

NINDS 1R21NS129120-01 - Structural and metabolic neuroimaging of ME/CFS occurring with and without COVID-19 infection XU, XIANG ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI NY $253,500

NIAID 5R01AI084898-13 - Stress effects on virus protein induced inflammation and sickness behavior WILLIAMS, MARSHALL OHIO STATE UNIVERSITY OH $512,362

NINDS 5R21NS121852-02 - Proteomic identification of Myalgic encephalomyelitis/chronic fatigue syndrome NATELSON, BENJAMIN ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI NY $127,245

NIAID 1R01AI170850-01 - Long COVID as a putative subtype of chronic fatigue syndrome SAXENA, RICHA MASSACHUSETTS GENERAL HOSPITAL MA $370,568

NIAID 1R01AI170839-01 - Human Herpesvirus 6B in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome pathogenesis: temporal analysis of viral reactivation and immunity to elucidate cause vs effect LACERDA, ELIANA LONDON SCH/HYGIENE & TROPICAL MEDICINE UK $531,652

NIAID 1K23AI171263-01 - Evaluating the Epidemiology and Determinants of Neurologic Post-acute Sequelae of SARS-CoV-2 PURPURA, LAWRENCE COLUMBIA UNIVERSITY HEALTH SCIENCES NY $192,102

NINDS 3R21NS121852-01A1S1 - Proteomic identification of Myalgic encephalomyelitis/chronic fatigue syndrome NATELSON, BENJAMIN ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI NY $102,156

NINDS 3R01NS111105-03S1 - Maintenance and Incidence of ME/CFS following Mono JASON, LEONARD DE PAUL UNIVERSITY IL $200,734

NINDS 3U24NS105535-05S1 - Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) BROWN, LINDA RESEARCH TRIANGLE INSTITUTE NC $99,999

NIAID 4U54AI138370-06 - Center for Solutions for ME/CFS LIPKIN, W. IAN COLUMBIA UNIVERSITY HEALTH SCIENCES NY $600,000

NINDS 3U54NS105539-05S1 5814 Topological Mapping of Immune, Microbiota, Metabolomic and Clinical Phenotypes to Reveal ME/CFS Disease Mechanisms - Admin Core UNUTMAZ, DERYA JACKSON LABORATORY ME $45,400

NINDS 3U54NS105539-05S1 5815 Clinical Core VERNON, SUZANNE THE BATEMAN HORNE CENTER OF EXCELLENCE UT $45,400

NINDS 1ZIANS003157-07 - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NATH, AVINDRA NIH - $1,095,092

NINR 1ZIANR000019-13 - Investigating Correlates and Therapeutics of Fatigue SALIGAN, LEOREY NIH - $3,655,006

NIEHS 1ZICES103362-02 - NMR Research Core Facility MUELLER, GEOFFREY NIH - $963,802
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From the list above with my observations.

A Long Covid study with no obvious links to studying ME/CFS.

NIAID 1K23AI171263-01 - Evaluating the Epidemiology and Determinants of Neurologic Post-acute Sequelae of SARS-CoV-2 PURPURA, LAWRENCE COLUMBIA UNIVERSITY HEALTH SCIENCES NY $192,102


Funding for the Collaborative Research Centres, so presumably already allocated.

NINDS 3U24NS105535-05S1 - Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) BROWN, LINDA RESEARCH TRIANGLE INSTITUTE NC $99,999

NIAID 4U54AI138370-06 - Center for Solutions for ME/CFS LIPKIN, W. IAN COLUMBIA UNIVERSITY HEALTH SCIENCES NY $600,000

NINDS 3U54NS105539-05S1 5814 Topological Mapping of Immune, Microbiota, Metabolomic and Clinical Phenotypes to Reveal ME/CFS Disease Mechanisms - Admin Core UNUTMAZ, DERYA JACKSON LABORATORY ME $45,400

NINDS 3U54NS105539-05S1 5815 Clinical Core VERNON, SUZANNE THE BATEMAN HORNE CENTER OF EXCELLENCE UT $45,400


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


NMR = Nuclear Magnetic Resonance. Again, the link to the project doesn't work, but finding Mueller and the Nuclear Magnetic Resonance (NMR) Group, https://www.niehs.nih.gov/research/atniehs/labs/gisbl/pi/nmr/index.cfm, there doesn't seem to be any obvious justification for why supporting his facility shold count as ME/CFS research funding.

1ZICES103362-02 - NMR Research Core Facility MUELLER, GEOFFREY NIH - $963,802


So if the quoted $12.6 million comes from simply adding up the listed projects, then taking out the clearly non-ME/CFS research actually puts the figure at around $7.8 million.
 
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