Reply from the NIH

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Quilp

Senior Member
Messages
240
Dear Mr. ********:


We are responding to your email to the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health (NIH), concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

You asked if there is an update on the status of the NIH intramural ME/CFS study and the timing of the release of the results. It is still too soon to know when or where that study will be published, but we will share that information when it is available.

We would like to take this opportunity to discuss some of our research in the field of ME/CFS. In 2015 NIH made a commitment to strengthen its efforts to advance research on ME/CFS. As part of these efforts, NIH tapped the Trans-NIH ME/CFS Working Group to lead a multi-Institute research effort. The Working Group has been very active and is working to increase the number of grant applications on ME/CFS submitted to NIH and to increase the number of investigators in the field. The group is also identifying the barriers to performing research on ME/CFS so that strategies can be put in place to overcome these challenges. To learn more about the Trans-NIH ME/CFS Working Group’s efforts, you may wish to visit their website at https://www.nih.gov/mecfs.

To sign up for the Trans-NIH ME/CFS Working Group listserv, visit the website and click on the “Join our listserv” icon on the right side of the page. A Trans-NIH ME/CFS Working Group Advocacy Call was held on August 26th from 3:00-4:00 p.m. EST. You can view a transcript and recording of the call at https://www.nih.gov/mecfs/events under “Past Events.” The Working Group’s newest newsletter from February 2023 is located at the bottom of the following site: https://www.nih.gov/mecfs/mecfs-resources.

NIH supported three ME/CFS Collaborative Research Centers at Columbia, Cornell, and Jackson Laboratories as well as a Data Management Coordinating Center (DMCC) at RTI International for 5 years and issued RFAs to support Centers and a DMCC for another 5 years. Information and updates about the ongoing ME/CFS Centers can be found here: https://mecfs.rti.org/. Webinars from each of the Centers and the DMCC provide overviews of their research: https://www.youtube.com/playlist?list=PLJY2toEjWadPflbHSNYyozKcOlC4HzIcQ. In addition, the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Network (MECFSnet) has published two newsletters featuring research news and new and ongoing activities at NIH related to ME/CFS. The newsletters are available at https://mecfs.rti.org/newsletter/.

Finally, it may interest you to know that researchers from Columbia University Mailman School of Public Health and Jackson Laboratory discovered differences in the gut microbiomes of people with ME/CFS compared to healthy controls. These findings add to growing evidence that connects disruptions in the gut microbiome to ME/CFS. You can read about this NIH-funded research in the following press release from February 8, 2023: https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs.

We hope this information is helpful.

Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group
 
BrightCandle

BrightCandle

Senior Member
Messages
1,049
No, given the Intermural study ended in 2020 the lack of urgency is a major problem. Having the researchers work on the paper on the weekends on their own time is extremely discourging. None of the labs are doing research likely to lead to anything like a treatment and the microbiome is years out of date since we already know the microbiome is adjusted and have done for what 7 years now? This is the NIH treading on ground already trodden and making no new progress. Its not encouraging its extremely concerning and represents a breach of their agreement with the ME charities to continue to pursue ME/CFS research until a treatment is found.
 
Q

Quilp

Senior Member
Messages
240
Brightcandle, you are absolutely right. The recent microbiome publication has hardly caused a ripple. And why ? Because we have heard it all before.
There is a one minute video dating to December 2019 given by Lipkin. He said the results ( preliminary data relating to the NIH intramural study ) are ''very exciting'' and should ''give you hope''. How can we have hope when almost three years later the results still haven't been published.
It feels like they have switched the light off and left the room only to make their way down the corridor to the Long Covid Department.
I am fed up of watching videos on YouTube of happy, bubbly presenters talking about this meeting, that workshop and more rehashed studies, that lead to nothing.
We are in a tailspin, we are suffering immensely and some of us are dying. After three years the NIH still can't tell us when and where the results will be released. There is not a human alive out there that will ever persuade me that this is anything but shameful.
 
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lenora

Senior Member
Messages
4,594
Hi @Quilp.....at least you had a reply. At the risk of eggs being tossed at me, this is more than most people are able to receive.

In reality we can only draw attention to our problem(s). A lot of researchers today are underpaid and overworked.....how can we make a difference?

This has been the standard for the 35+ years that I've been involved. It's not something that will be easily answered. Leaning on already overworked people is not going to help. I wish I had a better answer....so I'll leave it to you. It's not any different here, although we do have some doctors who are trying to make a difference. Yours, Lenora
 
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joshualevy

Senior Member
Messages
153
My standard (not from ME/CFS studies), is that if data collection is finished, and the result have not been published within two years, then the study was unsuccessful. In fact, I've found successful results are published within one year, but I wait two years just to be extra safe. However, Waiting for results longer is a waste of time, because they will be unsuccessful. Good results are published quickly, bad results are not published at all, or slowly.
 
Dakota15

Dakota15

Senior Member
Messages
272
Location
Midwest, USA
FYI @Quilp @lenora @BrightCandle @joshualevy, just sharing this message today from Dr. Vicky Whittemore with NIH on the ME/CFS Intramural Study

"I just checked and they plan to submit the paper for review within the next month. There have been many people who needed to review the paper at multiple levels at NIH which is what has taken time. They told me they would let me know when it gets submitted for review. It is hard to know how long that review will take – some journals are taking months to review submitted manuscripts, so we can’t predict how long that process will take.Thanks, and hope you are well. Best wishes, Vicky'
 
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lenora

Senior Member
Messages
4,594
Hello @Dakota 15, please thank Dr. Whittemore for her input. Too many times we forget that there are actual people who believe us and are working for us. I've seen this firsthand and know it to be true.
 
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Q

Quilp

Senior Member
Messages
240
So, the transcript was ''almost completed in August' ( 2022 ) and they ( NIH ) had to look at it, what, for at least eight months ? What did they do, pass the manual from one member to another.
I have a novel idea. Why not give the transcript to each member at the same time. Looks like it will be towards the end of the year before the results are published in a journal. Truly pathetic.
People are taking their own lives. Compare this to Long Covid and the speed they are moving. I don't trust Avi Nath, i don't trust Wallitt and i don't trust the NIH.
 
Q

Quilp

Senior Member
Messages
240
Sorry, Dakota15, i forgot to say thank you for bringing this to our attention. Let's hope the news is important enough for the journals to publish this as quick as possible.

Kind regards
 
Q

Quilp

Senior Member
Messages
240
"I just checked and they plan to submit the paper for review within the next month'' My bolding

That right there sums up the NIH. For those of you that don't know, members of the NIH themselves said that the transcript was pretty much done and ready for submission, back in August 2022.
They have ( and when I say they, i suspect just a handful of researchers ) been staring at these results for well over three years,
Shameful.
I just hope Prusty and others really are onto something, Imagine that, A researcher with a limited budget finds the cause of this illness, whilst the NIH embark on another five year study.
 
C

cheeseater

Messages
184
Who funds the NIH? You should all get in touch with your elected representatives and ask for a review of how your taxes are being spent. Why would any agency withold a study, any study, unless the study demonstrated a ridiculous waste of time, energy and resources? If the study tried to find answers and came up blank, then their methodology should be known so that the same methodology is not repeated.
 
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cheeseater

Messages
184
As per the letter wording, it could be said they are saying the study will only be released IF it is first published somehwere. As already noted the paper was submitted years ago. No guarantee the paper will be published anywhere, or released by NIH to be published anywhere. If it is not released to be published, or if it is released to be published, but nobody wants to publish it, then it will not be shared.

To quote the letter "It is still too soon to know when or where that study will be published, but we will share that information when it is available."
 
C

Consul

Messages
600
I think they likely have strong findings because afterwards they decided to run the exact same protocol for GWI.

IIRC that is.
 
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