USA: NIH National Institutes of Health news

Dec of 2023?

Jeez! Will all of the research findings be released to the public during that time?

 

The NIH has now posted a copy of the newsletter on the resources page of their website:

https://www.nih.gov/mecfs/mecfs-resources

(it's at the bottom of the page)

 

I think I will apply for their research roadmap working group.

Hope my name doesn't throw up any red flags. It might. I've some history there.

 

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/

 

Adding cross-reference links for the threads that discuss the two papers mentioned in the recent NIH Director's Blog:

1. https://www.s4me.info/threads/multi...c-fatigue-syndrome-patients-2023-xiong.23022/

2. https://www.s4me.info/threads/defic...nces-and-fatigue-2023-guo-lipkin-et-al.23117/

 

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?

 

Dedra Buchwald can be a bit biopsychosocial. I think she co-signed one or more of the letters Peter White and co organised.

 

She is currently listed as a Steering Committee Representative for COFFI, https://www.coffi-collaborative.com/steering-committee, so I would say that she can, and is, more than a bit biopsychosocial.

 

She is also listed as an author on this Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

 

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

 

Information, education and support for health and social care professionals
Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management
Evidence review B
NICE Guideline, No. 206

London: National Institute for Health and Care Excellence (NICE); 2021 Oct.
ISBN-13: 978-1-4731-4221-3

https://www.ncbi.nlm.nih.gov/books/NBK589852/

 

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"

 

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.”

 

Funding for the ME/CFS Collaborative Research Centers.

 

Show me your budget, and I will know your priorities

 

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

https://twitter.com/user/status/1645591435159420928


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

 

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.

 

Here are a couple blogs by Jennie Spotila about what the NIH claims to have spent and what they actually spent in previous years.

The 2020 NIH Funding Fact Check
https://occupyme.net/2021/08/09/the-2020-nih-funding-fact-check/

The 2019 NIH Funding Fact Check
https://occupyme.net/2020/10/28/the-2019-nih-funding-fact-check/