NIH Request For Information: Soliciting Input on How Best to Advance ME/CFS research

(forwarded message)

Source: National Institutes of Health

Date: April 3, 2019

URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION

News from NIH: DEADLINE EXTENDED: Request for Information: Soliciting Input on How Best to Advance ME/CFS Research
----------------------------------------------------------
The deadline for responses to the Request for Information has been extended to May 1, 2019

The National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS Research

(https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council/ME-CFS-Working-Group)

is soliciting input on approaches and strategies to address the charge of the Working Group and will use the responses to this Request for Information (RFI) to help inform discussions of how to advance research on ME/CFS.

NIH is seeking input from all interested stakeholders, including researchers, health care providers, individuals with ME/CFS, patient advocates and health advocacy organizations, scientific or professional organizations, federal agencies, as well as other interested members of the public. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership as a whole.

(You are receiving this message because CDC is participating in the NANDS Council Working Group. In an effort to reach the broadest audience possible, NINDS requested that an announcement be sent to the CDC listserv.)

To view the RFI and submit comments, please visit:

https://www.ninds.nih.gov/RFI-NANDS-ME-CFS.

--------
(c) 2019 NIH

 

I only managed to fill in 2 boxes, but it still accepted my meagre contribution.

 

Thanks for posting the direct link for submissions.
I will be making one but didn't have the cognitive fortitude to figure out how to send it (funny how that works, i can write opinions but i cant find or figure out stuff).

 

@JaimeS
In that vein i could use some help, does anyone have a link to the text from the rejection to OMF from a couple years back, the one where they called Stanford an illegitimate medical institution?
It would really help me out

 

Here's Davis reaction to the rejection: http://www.meaction.net/wp-content/uploads/2015/08/ResponseToNIHRejectionsRonDavis.pdf
But it doesn't say anything about Stanford. Perhaps Davis only mentioned this only in video's and talks?

 

I've seen that one but it was one that i recall was posted to PR but i could not find it with the search (i'm having trouble thinking straight)

 

Direct link to the web-based form for submitting suggestions, https://www.ninds.nih.gov/RFI-NANDS-ME-CFS

Each of the bullet points below is an area that you can make a suggestion on. The submission form has a free-text box for each point that allows you to write in your own words your opinion (there is no indication on a limit to the amount of text but I would anticipate it to be generous).

• The most compelling ME/CFS research needs.
• Strategies for overcoming scientific challenges or barriers to progress in ME/CFS research.
• Potential research resources, tools, and/or materials that could help advance ME/CFS research or enable early career investigators and senior investigators new to the ME/CFS field to more easily conduct research.
• Relevant considerations and strategies for clinical ME/CFS research, including the development and validation of data standards and outcome measures.
• Overcoming challenges or barriers to establishing a career in ME/CFS research for early career investigators and those new to the field.
• Approaches to strengthen research and career training for ME/CFS investigators.
• Identifying related scientific areas that may be relevant to ME/CFS and strategies for establishing collaborations with experts in those areas to help advance ME/CFS research.
• Approaches to reduce barriers that prevent individuals with ME/CFS from participating in research. For example, these might be logistical challenges, such as difficulty traveling to a study site, or might be because of an unwillingness to undergo certain types of research protocols.
• Strategies for increasing ME/CFS research collaboration and communication between relevant stakeholders.
• Other approaches that may improve the overall field of ME/CFS research.

There is no requirement for any login, simply type your text into the relevant box(es), prove that you aren't a robot (by clicking in the box next to "I'm not a robot"), and then click submit.

So the process is as easy, if not easier, than posting comments here on the forum. The more responses the NIH receives, the more engaged they can see the patient population is, and the more suggestions they receive that encourage researchers to engage with us here, the more influence us patients will gain over research decisions.

If you only want to support the forum, I'd suggest using the second to last category, "Strategies for increasing ME/CFS research collaboration and communication between relevant stakeholders", as the one to show your support for researcher/patient communication here.

ETA: Added "for each point".

 

Gosh for me that's too complicated and way too much involved. Since there is now an extension until May 1st could we get behind @Michiel Tack and submit his proposal from the forum. If people want to submit individually they can. I would like to be involved in some way so a submission from the forum would be ideal for me. Is that a runner at this point?

 

I've just visited the web form page, but at the moment my brain can only produce the answers 'Money' and 'Diagnostic Test' to the questions. Accurate, but not helpful! I'll keep thinking.

 

My personal opinion is that if you can add a little bit of explanation then that would be ideal but if that is all you can get your brain to provide then submit that - far better to submit one or two word answers than not to submit anything at all. Even the briefest of answers means you are engaging in the process.

 

https://twitter.com/user/status/1115175570294366209

 

Reminder (including to myself) that there's still time to finish

 

Fund everything, everything that doesn't have a ridiculous protocol.

If protocol or outcomes are changed, or there is a failure to publish, take the money back, or pay in installments (assuming this isn't done already which I think it is). Non adherence should result in fraud charges at the very least.

We need as much breadth, as many ideas, as possible. We need the negative trials on record. We need people to research what they say they will, properly.

If that means that a few less aircraft carriers get built, or if funding for already well understood and researched conditions is halted for a week or 2, to pay for years worth of ME research, then so be it.

Yes it will be wasteful, nearly 100% of the money will tell us nothing useful, but they've done sod all for over 3 decades, it's our turn to get funding.

Over half my life is gone.

 

Bump - a week to go until the deadline for submissions.

 

More at https://www.meaction.net/2019/04/24/meaction-drafts-response-to-nihs-request-for-information/

 

Many thanks to ME Action for working out a detailed submission. Just two remarks:

Only the response to the first question is written in full sentences and paragraphs. The other responses are mostly short highlights, many which repeat points that were made in the response to the first question. Maybe it's best to work out a text about what the NIH should do to further ME/CFS research without worrying too much about the subdivision into the particular questions the NIH asks.

I found this to be very optimistic, to say the least. Even if (and I believe this is not currently the case) we had a good research idea or lead that might result in a biomarker in a short time and there was sufficient money to fund that research now, then it will still take months for that study to be completed with a large enough sample. Then many months will go by before it gets published. And then it has to be replicated by another group... To me, it doesn't seem realistic to have clinically viable ME biomarkers within 3 years.

 

I'm working on my entry but need some references if anyone can help
Does anyone have a link to a source where Dr Klimas said she is getting money from a Parkinsons charity to do a trial on ME?

Also any reference to where she has gotten NIH money for GWI? (this one is less critical)

 

Also references for researchers being warned away from ME research would be amazing

 

https://forums.phoenixrising.me/thr...tempt-to-reset-me-cfs-very-interesting.61811/

I think she gets GWI funding from DoD and VA?
https://cdmrp.army.mil/gwirp/research_highlights/18klimas_highlight
https://forums.phoenixrising.me/thr...-and-me-cfs-decries-low-me-cfs-funding.56100/

CFS can appear in a GWI study as controls:
https://www.s4me.info/threads/explo...arker-co-expression-in-gulf-war-illness.3893/ (multiple funders, which means none gave much, but does include NIAID and VA, also NIAAA--alcoholism?)

 

Thank you, i have added a reference to the Health Rising article in your first link